MODEL AID-IN-DYING ACT
(Drafted by Students at the Iowa Law School
75 Iowa Law Review 125 (1989)
Craig A. Brandt, Patricia J. Cone, Angele L. Fontana, Rachelle M. Hayes, Jody
M. Hehr, Janet L. Hoffman, Rebecca Johnson, Janet M. Lyness, Linda J. Messer,
Jane E. Robinette, Joyce Shireman, Michael Shubatt, Cheryl K. Smith, Stanley B.
Steines, Natalie Spencer and Laura Wilbert
Phillip J. Leonard
Copyright 1990 by the University of Iowa (Iowa Law Review)
This Model Aid-in-Dying Act is the product of an intense year-long seminar addressing the substantive topic of aid-in-dying and the process of researching, debating, negotiating, and drafting legislation. The topic was selected from among a number of possibilities under the more general heading of law and technology. The larger theme is that technological advances accelerate social change. They present society and the law with new and often unanticipated dilemmas. The courts generally are the first to deal with the dilemmas technology creates; however, in this age of statutes, legislatures eventually will, and must, confront the problems technology engenders. Legislatures will have the opportunity to provide a more comprehensive solution to the problems technology has caused than courts are able to provide because courts by their nature are capable of dealing with difficult issues only on a case-by-case basis.
Modern medical technology provides a compelling example of this sort of social and legal challenge. Without providing a cure or any reasonable hope of a cure, and sometimes without providing a tolerable death, technology can sustain biological life, sometimes for many years. Almost everyone knows of someone who has died or is dying a slow or excruciating death or who is kept alive only by artificial means. Current conservative estimates indicate that about 10,000 Americans are in persistent vegetative states. They are condemned to live in comas perhaps for decades with no realistic possibility of recovery.
Although euthanasia [FN1] has been a subject of intense interest for centuries, it did not become a prominent focus of professional and scholarly discussion until the 1950s. The first court opinions and the beginnings of legislation related to aid-in-dying occurred only in the mid-1970s. The magnitude of societal and legal concerns regarding euthanasia parallels the advances in medical technology that compel those concerns. Although one might wish that the law, or at least legal scholars, would anticipate such events just over the horizon, it appears that the technology always arrives before legal policy makers start thinking seriously about how to control it or respond to the problems it creates.
The ability to sustain life has made the process of dying a focus of increasing concern. It has brought the advent of hospices, books and courses on death and dying, the growth of organizations to support and encourage reform movements, living wills and durable powers of attorney, and various other efforts to regain control of dying from the medical profession and its new technology. It also has brought innumerable cases before the courts of this county, often requiring judges to act as Solomon to determine whether and how a patient should live or die.
All technologically advanced societies, and only technologically advanced societies, have seen this growth of concern surrounding the dying process. Advanced technology has created the dilemma of when to extend life and when to end it. These choices were absent in earlier and less advanced societies when even a pinprick could be life-threatening and pneumonia was likely to be fatal.
This Model Act represents the efforts of seventeen committed law and graduate students who enrolled in a University of Iowa Law School seminar to wrestle with issues integrating technology and its effect on the extension of life and upon death. The seminar's goals were to grapple with the issues as broadly as possible, debate and vote upon alternative social policies and legislative solutions, and draft a detailed and comprehensive statutory scheme governing aid-in-dying.
In a sense, this Model Act really began when students registered for the seminar in the spring of 1988. Students with wide-ranging undergraduate majors, life experiences, backgrounds, and attitudes toward the topic of euthanasia enrolled in the seminar. [FN2] Students were assigned summer readings, and presumably summer thinking: a book on "the right to die," a book on writing style, and a style manual for drafting model legislation. To our surprise, most (but not all) of the anti-aid-in-dying attitudes had faded by an early stage in the autumn debates.
At the start of the fall semester, the class defined a range of topics and issues relating to euthanasia. Students were assigned to research and become experts on various topics and to provide research memoranda to the class. [FN3] Once the research memoranda were completed, the class debated a series of policy issues and by majority vote adopted policy positions to be reflected in their Model Act. [FN4] Thereafter, the basic outline of the Model Act was drawn, and drafting assignments were made. Individuals or small groups of students drafted their respective sections with preliminary comments, and then the class, acting as a drafting committee of the whole, edited and often wholly rewrote the drafts of statutory language. For editing purposes, the statutory language was projected from a computer onto a large screen, permitting group participation in the editing process. The actual drafting, of course, made evident further policy issues and refinements that the class needed to debate and decide.
After the text of the Model Act largely was completed, the class reviewed and debated the concepts, justifications, and explanations to be developed in the comments, and completed the drafting of the comments. Then, class members were assigned to edit comments originally drafted by other class members.
Once a fairly complete draft was in hand, the class sent copies to a wide range of people and groups we thought might be interested and scheduled public hearings. Individuals and representatives of groups from many sides of the euthanasia debate and from around the United States and Canada attended these hearings. Their thoughtful comments, as well as the many other written comments received in the mail, contributed immeasurably to the final product.
Many states, including Iowa, have passed statutes permitting terminally ill patients, their families, and health care professionals to withdraw life support systems with the intended effect of producing death. This feature of present law is incorporated in the Model Act, and this Act greatly expands upon that law in four fundamental ways.
First, the Model Act permits, under certain circumstances, both the administration of a life-terminating drug and the withholding or withdrawal of life support as legitimate means to provide aid-in-dying. In other words, the Model Act eliminates any distinction between active and passive euthanasia. The Preamble sets forth the justification for the expansion of the law in this direction. Second, the Model Act frees from the definition of terminally ill the notions of imminency and pain and suffering that are characteristic of prevailing laws. Rather, the Model Act provides a more expansive definition of terminal illness. Third, the Model Act permits technologically dependent persons to receive aid-in-dying. Thus, persons who can live relatively long periods of time, but only with the assistance of mechanical devices, could elect to receive aid-in-dying. Fourth, any competent adult who is terminally ill or technologically dependent can demand aid-in-dying by words or acts, or, if the person is incapable of demanding aid-in-dying, by a surrogate named by the competent adult in a previously executed directive.
Aid-in-dying can be requested on behalf of any terminally ill or technologically dependent patient for whom no surrogate is acting if the patient is incapable of acting on her own behalf. Requests must be referred to an independent review board (an Aid-in-Dying Board) to determine if the administration of aid-in-dying would be consistent with the patient's intent. Because the principal justification of the Model Act is that aid in-dying should be available only if the patient wants aid-in-dying, the Aid-in-Dying Board can order aid-in-dying only if it finds by clear and convincing evidence that the patient intends to be provided aid-in-dying under the circumstances.
Lastly, the Model Act incorporates an optional provision that would permit a competent adult who concludes she has an intolerable dependence to receive aid- in-dying. Aid-in-dying would be available, however, only if an independent review body unanimously were to agree that the dependence is intolerable, and only after the adult unsuccessfully had undergone rehabilitation and psychological evaluation. An intolerable dependence is an acquired or congenital condition that is permanent, irreversible, and considered intolerable by the afflicted patient by reason of the patient's pain or suffering. For purposes of the Model Act, a patient does not have an intolerable dependence unless the patient is dependent on others for substantially all activities of daily living.
No person, whether competent or incompetent, can receive aid-in-dying if that person expresses orally or in writing at any time that he does not want to receive aid-in-dying. Furthermore, under no circumstances can any governmental authority request aid-in-dying for any person.
As evidenced by this very brief description of the substantive provisions of the Model Act, the students have proposed controversial legislation. That characterization, however, in no way denigrates the significance of what they have accomplished, the care with which they have proceeded, or the educational experiences they have had working as a group considering important and contentious issues of public policy and reducing their considered judgment to a comprehensive and integrated statute.
Few experiences in legal education, or any other education, for students or for teachers, involve this much time spent together--time spent in exploration and discussion, deeply felt argument, dissection of logic, and the creation of a product that is the result of group effort and that has the potential to be law and not merely to be about law. Because very few of the votes on any given provision were unanimous, students also learned how law grows out of conflict and compromise. Because of the sheer time spent together, and the way the time was spent, and perhaps because every session was unavoidably about our thoughts and feelings about life and death, we believe we got to know these students (and they probably got to know us and each other) in a way that is rare in education. We are different teachers and human beings for the time we invested with these students and they with us.
FN1. Euthanasia is defined as "a gentle and easy death"; "the means of bringing about a gentle and easy death"; and "in recent use: The action of inducing a gentle and easy death." The Oxford English Dictionary 444(2d ed. 1989).
FN2. Because the seminar was oversubscribed, we were able to elicit prospective students' attitudes on euthanasia by way of a short questionnaire that also included information regarding each student's background. Students also were given the opportunity to specify any special background or interest that might give them and other students a unique insight into euthanasia.
FN3. These include ethical positions supporting and opposing legalization of assisted death, selected organizational positions, relevant health care institution policies and rules, relevant existing and proposed law, current practices (notwithstanding law and policy), public opinion, and economic aspects.
FN4. The class addressed concerns such as the following: Should we have assisted death at all? If so, what categories of conditions should be eligible? Passive? How should those conditions be defined? Age limitations? Active or passive? Any third party oversight? If so, who and by what process?
Sheldon F. Kurtz
Michael J. Saks
TABLE OF CONTENTS
ARTICLE 1 GENERAL PROVISIONS
'1-101 Short Title
ARTICLE 2 REQUIREMENTS FOR A VALID DIRECTIVE
'2-101 Who May Sign a Directive
'2-102 Formal Executive Requirements
'2-103 Effectiveness of Designation of a Surrogate
'2-104 Duration of a Valid Directive
'2-105 Effect of Directive Executed Outside of the [State]
'2-106 Delivery of Directive to Primary Physician or Health Care Facility
'2-107 Delivery to and Copy of Directive in [State] Registry
ARTICLE 3 REVOCATION OF DIRECTIVE
'3-101 Manner of Revocation
'3-102 Communication of Revocation
ARTICLE 4 DEATH WITH DIGNITY
Model Directive 156
ARTICLE 5 AID-IN-DYING FOR A TERMINALLY ILL PATIENT
'5-101 Demand for Aid-in-Dying for Terminally Ill Patient
'5-102 Request for Aid-in-Dying for Terminally Ill Patient
ARTICLE 6 AID-IN-DYING FOR TECHNOLOGICALLY DEPENDENT PATIENT
'6-101 Demand for Aid-in-Dying for Technologically Dependent Patient
'6-102 Request for Aid-in-Dying For Technologically Dependent Patient
[ARTICLE 7 AID-IN-DYING FOR PATIENT WITH AN INTOLERABLE DEPENDENCE
'7-101 Request for Aid-in-Dying for Patient with an Intolerable Dependence
ARTICLE 8 GENERAL LIMITATIONS AND RESTRICTIONS
'8-101 Refusal to Receive Aid-in-Dying
'8-102 Voluntariness and Informed Manner Requirement
'8-103 Restoration to Competence
'8-104 Prohibition on Participation by Government or Health Care Provider or Insurer
ARTICLE 9 AID-IN-DYING BOARDS
'9-101 Jurisdiction and Duties of Aid-in-Dying Boards
'9-102 Operation and Procedures of Aid-in-Dying Boards
'9-103 When Patient's Intent Can Be Determined
'9-104 When Patient's Intent Cannot Be Determined
'9-105 Closed Meetings
'9-106 Claim Preclusion and Jurisdictional Statement
ARTICLE 10 PROVISION OF AID-IN-DYING
'10-101 Who May Provide Aid-in-Dying
'10-102 When Aid-in-Dying May Be Provided
'10-103 How Aid-in-Dying May Be Provided
ARTICLE 11 CONSCIENTIOUS OBJECTION AND CONFLICT OF INTEREST
'11-101 Individuals Who Have A Conscientious Objection or Conflict of Interest with Respect to a Particular Patient
'11-102 Health Care Facility
ARTICLE 12 DUTY TO TRANSFER
'12-101 Transfer or Referral of Patient
'12-102 Transfer of Records
'12-103 Reliance on Transferred Records
ARTICLE 13 IMMUNITIES
ARTICLE 14 PENALTIES
'14-101 When Inheritance Rights Forfeited
'14-102 Liability of Health Care provider
'14-103 Liability for Failure to Transfer
'14-104 Destruction or Concealment of a Directive or Revocation
'14-105 Falsification of Directive or Revocation 201
'14-106 Physician Liability
'14-107 Further Liabilities
ARTICLE 15 RESPONSIBILITIES OF THE [DEPARTMENT OF HEALTH]
'15-101 Powers and Duties
'15-102 Regulations for Aid-in-Dying
'15-106 Reporting Requirements
'15-107 Creation of Aid-in-Dying Boards
'15-108 Training of Counselors
'15-109 Evaluation Research
ARTICLE 16 MISCELLANEOUS PROVISIONS
'16-101 Prior Directives
'16-102 Effect of Aid-in-Dying on Construction of Wills, Contracts, and Statutes
'16-103 Insurance or Annuity Policies
'16-105 Duties of [Department of Transportation]
'16-106 Notification of Aid-in-Dying Policy
'16-107 Waiver of Fees
'6-109 Uniformity in Application to Patients
'16-110 Effective Date of [Act]
AN ACT GOVERNING THE RIGHT OF PATIENTS WHO ARE TERMINALLY ILL, OR WHO
ARE TECHNOLOGY DEPENDENT[, OR WHO HAVE AN INTOLERABLE CONDITION] [FNA] TO
This [Act] is grounded in the ethic of beneficient aid-in-dying--an ethic that values personal integrity and human dignity more than mere biological existence. In certain situations, when a patient expresses the wish to die, morality and even kindness call upon society to allow the termination of the patient's life consistent with the patient's intent. Fundamentally, this ethic is most defensible because it provides for individual choice about a matter of vital importance: the timing, manner, and circumstances of one's death. The [Act] embodies the principles of freedom, autonomy, and individual liberty.
The advances of medical technology have been, at times, both a blessing and a curse. Modern treatments that forestall death often condemn people to a prolonged and unwanted existence. This extended life may be painful, humiliating, or undignified. This [Act] recognizes that some individuals may not choose merely to prolong life.
At the same time, this [Act] protects persons who wish to have their lives prolonged by providing them with a means to direct that they shall not receive aid-in-dying. The [Act] prohibits and penalizes aid-in-dying provided in a manner contrary to a patient's intent or inconsistent with this [Act].
Virtually everyone in American society agrees that the suffering of some patients must end through acceleration of the patient's death. The issues center on what kinds of patients should receive aid-in-dying, and how death is to be brought about. The [Act] resolves these issues with reference to the values of autonomy and dignity.
This [Act] authorizes the termination of life both through the administration of a life-terminating drug (sometimes called "active" aid-in-dying) as well as the withholding, withdrawal, or abatement of life-sustaining treatment (sometimes called "passive" aid-in-dying). In common usage, aid-in- dying often includes the withholding of nutrition and hydration from a dying patient. Although the withholding of nutrition and hydration has been more controversial than the withholding of other forms of treatment, most forms of passive aid-in-dying are a common part of current medical practice. Medical associations and many religious and nonreligious organizations that strongly oppose active aid-in-dying have approved passive aid-in-dying.
Virtually all courts and many commentators take the view that passive aid-in-dying is legal and ethical, but that active aid-in-dying is not and ought not to be. In reflecting upon this question, courts face a set of issues that differ in important ways from those faced by ethicists and physicians. The principal difference is that courts must build new case law on a foundation of existing law.
Courts face several obstacles in deciding cases in favor of aid-in-dying. First, in the absence of legislation authorizing aid-in-dying, courts have had to create exceptions that accommodate the existing statutory law of homicide to modern medical practice. All American jurisdictions treat as homicide any conduct that produces death and that either was intended to produce death or, absent intent, was known to be likely to cause death. In addition to punishing acts, the existing law treats omissions as culpable provided the actor owed a duty to the person who died. The duty of a physician or nurse to provide care to a patient is settled duty and the omission of care, if intentional (in order to produce death) or knowing (death would be a likely result), would constitute homicide, assuming the patient dies. Yet virtually everyone agrees that treatment ought to stop at some point even though there exists almost certain knowledge that death will result from the cessation of treatment.
Many courts accommodate the existing law of homicide to the societal preference for permitting a patient to die by declaring that the duty to treat patients ceases when treatment no longer benefits them. No culpable omission occurs when nonbeneficial treatment is withdrawn. The patients allowed to die are those whose families and doctors believe the patients would no longer benefit in a meaningful way from medical care.
Limiting doctor's and nurses' duties to patients has been a parsimonious solution, given the legal system's desire to accommodate the law to medical practice and societal preference. Numerous commentators point out that it is a solution that is disingenuous, unprincipled, circular, and begs the question. Put simply, it provides no principled basis for knowing when the duty of providing treatment ends. When physicians and families say the duty ends, it ends.
This judicial solution conceals the essential problem more than it solves it. Indeed, many commentators argue that in the context of euthanasia the distinction between act and omission has no real significance. A deliberate and knowing omission has the character of an act and, therefore, the distinction is illusory. If a patient is in the hands of caregivers and incapable of acting or communicating, the caregivers' choice controls that patient's fate. In this context, a knowing or intentional abatement of treatment really is an act rather an omission.
Those who approve the distinctions made by the courts for passive aid-in- dying but do not want to endorse active aid-in-dying have advanced the following further distinctions, that they argue constitute meaningful differences between active and passive aid-in-dying, or, as they prefer to term it, between killing and letting die.
One suggested difference between active and passive aid-in-dying is the intent of the actor or omitter. Surely there is a distinction between "intending" that one's patient or family member's life come to an end and merely "knowing" that turning off the respirator will produce death. But it is a distinction that has never made a difference to the law, which has always treated both intent to kill and knowledge that death would result from one's act as the "specific intent" crime of homicide. Even if the law treated the difference as meaningful, the distinction would require drawing a fine line in this context. The decision to turn off a respirator or to deprive a patient of hydration comes so close to the line that separates merely "knowing" the patient is going to die from "intending" that the patient die that it seems to have crossed into the zone of willful, intentional, and deliberate behavior. When the patient dies, no one is surprised. However, because the law treats the line separating knowledge from intention as irrelevant to the law of homicide, there is no need to struggle over where exactly that line should be drawn.
A second distinction that has been suggested is causation. The administration of a lethal drug is a different kind of cause of the patient's death than the withholding of oxygen or water. This also reflects the difference between acts of omission and commission. Many do not regard the difference as meaningful, and certainly not in the context of a patient completely in the care of others. This [Act] reflects the argument that the difference is more illusory than real, at least in this context.
A third proposed difference is the subjective feeling of the actor. Those who inject a lethal drug may feel more clearly that they are "killing" the patient than those who merely turn off a respirator and wait to see what course nature takes. The issue the [Act] addresses is whether this psychological difference for the caregiver should have legal significance. Although this psychological difference affects the caregiver, it does not affect the patient and, therefore, should not affect society's policies regarding euthanasia. The discomfort the psychological difference causes the caregiver should not be ignored, but it must be weighed against the comfort and intent of the patient. In this [Act], the patients' interests are treated as more important than those of their caregivers.
A fourth argument has been that active aid-in-dying is different because it is more open to abuse. This appears true at one level, but at another level the opposite may be true. Two forms of abuse are feared. The first is that patients who only are moderately ill could be given a lethal drug and die. Were these patients deprived only of a ventilator, they might breathe on their own and remain alive. The fear is that the law would make it easy for medical personnel to commit homicide undetected. This risk, however, must be weighed not only against the interest of patients who desire to have their lives ended with minimal suffering, but also against the second risk of abuse that cuts in precisely the opposite direction.
The second risk some commentators have argued is that a regime limited to passive aid-in-dying encourages abuse for all the reasons offered to distinguish active aid-in-dying. Enabling caregivers to end someone's life while pretending they are not really causal agents in the patient's death promotes more, not less, abuse. To avoid abuse, society needs to face the issue of aid-in-dying squarely and specify the kinds of patients for whom, and the conditions under which, society will or will not permit aid-in-dying. Active aid-in-dying forces people to face these questions and find answers. As long as caregivers can pretend they are not really killing people who want to die, society leaves the rulemaking in the hands of individuals who believe the question is merely ethical, professional, or personal, rather than a matter for society speaking through its law.
If the abatement of treatment is to be an exception to the law of homicide, as it plainly has become, then why not permit active aid-in-dying as well, such as the administration of a swift and painless drug? Those favoring an exception for active aid-in-dying point out that the interests of the patient and the minimization of the patient's suffering are paramount. For those patients choosing to have their lives ended, lethal injection is more humane than requiring the patient to struggle for air or die slowly of starvation or dehydration. As one older witness stated at the public hearings on this [Act] held in Iowa City on April 4, 1989, "it is not death that I fear, but dying."
This [Act] recognizes that society and the law already have taken the large step; certain acts and intents that at one time constituted homicide now fall within an exception. The next step--from abatement of life-sustaining treatment to active aid-in-dying--is a far smaller one. The reasons that favor maintaining a distinction between passive and active aid-in-dying, the former as a common medical practice and the latter as a crime, on balance are less persuasive than the arguments for authorizing both forms of aid-in-dying. This [Act] reflects that judgment.
Current laws recognize the value of individual autonomy and the belief that persons should be able to decide for themselves when and if they wish to have their lives extended. This [Act] advances the notion that the same values of ending pain and suffering and allowing for individual autonomy support active aid-in-dying as well as passive aid-in-dying.
The [Act] makes individual autonomy paramount. The purpose of the [Act] is to effectuate the patient's intent. This is evident in the sections of the [Act] allowing patients to direct their care by demanding aid-in-dying, by issuing written directives for future eventualities, or by appointing surrogates to assure that their wishes are met. This purpose also is evident in the provision that a person can execute a directive against receiving aid- in-dying or at any time refuse to receive aid-in-dying verbally or by conduct. In addition, the entire role of an Aid-in-Dying Board is to ascertain the patient's intent and to issue orders to ensure that the intent is carried out.
The [Act] diverges from existing law and most proposed statutes in several ways. Most current laws restrict aid-in-dying to terminally ill patients who are dependent on life-sustaining treatment and for whom death is imminent. The [Act] divorces the concept of imminent death from the definition of terminal illness. It also expands the methods available for aid-in-dying. It broadens the conditions under which a patient can demand or request aid-in- dying. It allows nonterminally ill individuals who are dependent on life- sustaining technology to request aid-in-dying. Furthermore, persons who suffer from an intolerable dependency may request aid-in-dying. The [Act] includes these latter two groups because persons who are technologically dependent or who have an intolerable dependence are often the persons with fewest options under current law; yet, they are the ones who may experience more severe pain and suffering than persons with terminal illnesses.
Although no law in the United States currently condones active aid-in-dying, many physicians already engage in this practice by prescribing medication for pain in a quantity sufficient to cause death. Administering a drug to relieve pain with the intent or knowledge that it also will accelerate dying has been approved by prominent medical, religious and legal establishments: Pope Pius XII (1957); the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research (1982); and the American Medical Association (1986). This practice is referred to as treatment having a "double-effect"--one part of which helps to relieve the patient's pain, the other which kills the patient. Although the law normally recognizes no defense that an act that was expected to cause death is justifiable because it produced desirable effects as well, an exception is made in this context. This [Act] allows regulation and review of double-effect treatment and other practices designed to end life in order to prevent abuses that may be happening currently.
The fear of abuse has contributed to the defeat of aid-in-dying legislation in the past. Consequently, this [Act] contains several provisions specifically designed to prevent or limit abuse. Most importantly, the [Act] gives individual patients the power to decide if and when they will receive aid-in-dying. This is accomplished by direct patient instructions or through the use of a written directive. By allowing patients to specify in a directive either their desire for aid-in-dying or their opposition to any aid-in-dying, patients who issue directives have the greatest control over their future treatment. Under this [Act], the right to say "no" to aid-in-dying exists for all persons without regard to age or competency. These rights ensure that individuals have the greatest possible control over their own lives.
The [Act] creates Aid-in-Dying Boards, supervised by the [State] [Department of Health], which review requests and issue orders to provide or deny aid-in- dying. Currently, in some states, family members can decide to have life- sustaining devices removed without any review by an impartial third party. No proof is required to show that the patient desired aid-in-dying. Aid-in-Dying Boards supervised by the [State] [Department of Health], created to review requests for aid-in-dying should eliminate the chance of individuals receiving aid-in-dying against their wishes. The [Act] defines the persons who may request aid-in-dying from an Aid-in-Dying Board. One function of Aid-in-Dying Boards is to decide all requests for aid-in-dying for incompetent patients who have not named surrogates. A Board is required to conduct a investigation to determine what the intent of the patient would be with respect to aid-in-dying if the patient were able to express a desire.
Under this [Act], state agents, insurance companies, and health care providers cannot request aid-in-dying on behalf of any patient. The [Act] includes these limitations to prevent those who may have a primarily economic motive for requesting aid-in-dying for another from doing so. Only the immediate family, significant others, or legal guardians of the patient, in addition to the surrogate (the person designated in a directive to act for the patient if the patient is unable to act) may request aid-in-dying for another.
The [Act] requires that Aid-in-Dying Board members have different occupations or professional licenses. The purpose of this requirement is to encourage a diversity of opinion and approaches among Board members and to provide for careful scrutiny of each request for aid-in-dying.
The [Act] recognizes that not all persons believe that aid-in-dying is morally correct, and allows individuals and certain institutions to declare themselves "conscientious objectors." The [Act] requires conscientious objectors only to refer the patient to a complying institution or caregiver. This provision recognizes that the personal beliefs and autonomy of individuals who may be asked to assist in the aid-in-dying process must be respected equally with the autonomy of the patient requesting aid-in-dying.
The [Act] intentionally is limited in scope. It is not intended to suggest who, if anyone, should receive aid-in-dying. It is hoped that, consistent with current practice, aid-in-dying will be sought only in extreme circumstances. It is not anticipated that receiving aid-in-dying will become the norm or expectation for any particular group in society. The [Act] in no way seeks to discourage any persons from obtaining any medical treatment that they wish to undergo in order to live as long a life as possible. It does not intend to suggest that a person's life is less worthwhile or desirable because of a physical condition or because a person is in the final stages of life. Rather, the [Act] provides a principled mechanism that, in appropriate circumstances, may be used to aid the patient who wishes assistance in the process of dying.
'1-101 SHORT TITLE
This [Act] may be cited as the Aid-in-Dying Act.
The following words and phrases, whenever used in this [Act], shall have the following meanings, unless the context otherwise requires:
(1) "Activities of daily living" means bathing, dressing, feeding, oral care, skin care, other personal hygiene, toileting, and transfer.
(2) "Adult" is either an emancipated minor or a person  years of age or older.
(3) "Aid-in-dying" means the withdrawal or withholding or other abatement of life-sustaining treatment or the administration of a qualified drug for the purpose of inducing death.
(4) "Competence" or "competent" means the ability of a person to make informed health care decisions.
(5) "Conscientious objector" means a person who is opposed to aid-in-dying for any reason.
(6) "Counseling" means a discussion between a counselor and a person demanding or requesting aid-in-dying conducted pursuant to the regulations adopted by the [Department of Health] for the purpose of:
(i) explaining the patient's prognosis;
(ii) assisting the person's understanding of the patient's prognosis;
(iii) ensuring that the person understands that the probable or assured result of providing aid-in-dying to the patient will be the patient's death; and
(iv) exploring with the person the motivations underlying a decision to demand or request aid-in-dying.
(7) "Counselor" is a person who has been trained pursuant to regulations adopted by the [Department of Health] for the purpose of counseling a person demanding aid-in-dying, or demanding or requesting aid-in-dying on behalf of another.
(8) "Custodial parent" or "custodial parents" includes a person or persons legally entitled to make decisions, including health care decisions, on behalf of a minor child. For purposes of this [Act], a custodial parent may be a biological parent, an adopting parent, or a legal guardian.
(9) "Declarant" is a person who expresses that person's wishes with respect to aid-in-dying in a directive executed in accordance with the provisions of Article 2 of this [Act].
(10) "Directive" means a writing that is executed pursuant to the requirements of Article 2 of this [Act] and in a form similar to the model directive in Article 4 of this [Act].
(11) "Emancipated minor" is a minor who has been released from parental custody and control by the custodial parent or by operation of law.
(12) "Health care facility" means an establishment that is licensed, certified, or otherwise authorized by the laws of this [State] to administer health care in the ordinary course of business.
(13) "Health care provider" is a person who is licensed, certified, or otherwise authorized by the laws of this [State] to administer health care in the ordinary course of business or in the practice of profession.
(14) "Incompetence" or "incompetent" means the inability of a person to make informed health care decisions.
(15) "Informed manner" occurs when a patient or other person who demands aid-in-dying or requests an Aid-in-Dying Board to decide whether aid-in-dying shall be provided to a patient has an appreciation of the relevant facts, has received adequate counseling and has been fully informed of:
(i) the patient's medical diagnosis;
(ii) the patient's prognosis if aid-in-dying is not provided
(iii) the nature of the aid-in-dying procedure and the risks associated with the procedure;
(iv) the probable or assured result of providing aid-in-dying which is that the patient will die; and
(v) the feasible alternatives to the proposed procedure.
[(16) "Intolerable dependence" means an acquired or congenital condition that is permanent, irreversible, and is considered intolerable by the afflicted patient by reason of the patient's pain or suffering. For purposes of this [Act], a patient does not have an intolerable dependence unless the patient is dependent on others for substantially all activities of daily living.]
(17) "Life-sustaining treatment" means a medical procedure or intervention, including nutrition and hydration, which uses mechanical or other artificial means to sustain, restore, or supplant a vital body function and which, when administered to a terminally ill or technologically dependent patient, serves only to prolong the dying process. For purposes of this [Act], neither the administration of medication nor the performance of a procedure to alleviate pain is considered life-sustaining treatment.
(18) "Minor" is a person under the age of  years who is not an emancipated minor.
(19) "Patient" is the person who is terminally ill, or is technologically dependent[, or has an intolerable dependence] without regard to whether the person is admitted to a health care facility.
(20) "Patient advocate" is a person who has been designated by the [Department of Health] to speak on behalf of a patient to ensure that the patient's wishes, concerns, and desires are made known to, and addressed by, a health care provider who provides care to the patient.
(21) "Person" means an individual, corporation, business trust, estate, trust, partnership, association, joint venture, government, governmental subdivision or agency, or any other legal or commercial entity.
(22) "Physician" is a person who is licensed to practice medicine in this [State].
(23) "Primary physician" is the physician who is primarily responsible for the care and treatment of a particular patient and, depending upon the time and circumstances, could include an attending physician in a health care facility, a specialist, or a patient's personal physician.
(24) "Qualified drug" means a drug approved by the [Department of Health] that will induce death in a swift, painless, and humane manner.
(25) "Significant other" is a person who currently is involved in a close personal relationship with another and who plays an important role in that other person's life.
(26) "State" means a state, territory, or possession of the United States, the District of Columbia, or the Commonwealth of Puerto Rico.
(27) "Surrogate" is a person who is authorized pursuant to a directive to make decisions concerning the provision of aid-in-dying if the declarant becomes unable to make decisions respecting aid-in-dying.
(28) "Technological dependence" or "technologically dependent" means reliance on the continued administration of life-sustaining treatment without any reasonably foreseeable expectation of living without that treatment.
(29) "Telostrician" is a person who is licensed by the [Department of Health] to provide aid-in-dying in this [State].
(30) "Terminal condition" or "terminally ill" or "terminal illness" means an abnormal condition, other than one that can be controlled by the administration of medication, which is incurable, irreversible, and will, in the opinion of two physicians, probably result in death.
Comment to Section 1-102
Section 1-102 sets forth definitions for the terms commonly used in this [Act]. Most of the definitions are straightforward. A few, however, require further explanation.
Section 1-102(2) defines adult as an emancipated minor or a person who is 18 years of age or older. Emancipated minors, as defined in Section 1-102(11), were included in this definition because age-based classifications tend to be arbitrary, and the failure to reach the age of 18 does not necessarily reflect a lack of capacity to make informed medical judgments. Furthermore, emancipated minors no longer have a parent legally empowered to speak on their behalf.
Aid-in-dying is defined in Section 1-102(3) as the withdrawal or withholding or other abatement of life-sustaining treatment or the administration of a qualified drug for the purpose of inducing death. Although many people believe that passively allowing a patient to die is morally and ethically distinguishable from actively assisting in a patient's death, this [Act] does not distinguish between these two methods of allowing death to occur for three reasons. First, combining them acknowledges that persons who provide aid-in- dying frequently know and intend that their actions will result in the patient's death--regardless of the manner in which aid-in-dying is provided. Furthermore, while caregivers may believe there is a psychological difference between the two, there is no moral difference between them that should be respected by law. Second, combining the methods permits more patients to receive aid-in-dying by permitting [both intolerably dependent and] terminally ill patients who are suffering but not yet dependent on life-sustaining treatment to receive aid-in-dying. Finally, combining the methods enhances patient autonomy by permitting the patient to choose to receive aid-in-dying in the manner that is the least painful.
Section 1-102(4) defines competence as the ability of a person to make informed health care decisions. To be competent under this [Act], a person must be capable of acting in an "informed manner" as that term is defined in Section 1-102(15). This definition is more finely tuned than the definition of competence generally. According to Barron's Law Dictionary, competence is the ability of a person to understand and to act reasonably. Barron's Law Dictionary 82 (2d ed. 1984). Thus, the definition of competence in Section 1- 102(4) differs from the more general definition of competence in that it is limited to health care decisions.
Section 1-102(6) defines counseling, and Section 1-102(15) makes the receipt of adequate counseling an absolute prerequisite for acting in an informed manner. But why require counseling, and why include it in the definition of informed manner?
As defined by Section 1-102(15), the concept of informed manner parallels the concept of informed consent. At common law, the concept of informed consent was premised on the notion that "[e]very human being of adult years and sound mind has a right to determine what shall be done with his own body; and a surgeon who performs an operation without his patient's consent commits an assault, for which he is liable in damages." Schloendorff v. The Society of the N.Y. Hosp., 211 N.Y. 125, 129-30, 105 N.E. 92, 93 (1914). At common law, therefore, a patient had to understand and consent to treatment before a medical procedure could be performed.
A person giving informed consent (which can include an authorized alternative decisionmaker's consent to a proposed procedure on behalf of an incompetent patient) must knowledgeably evaluate all of the available options and then act in an informed manner. To evaluate knowledgeably all of the available options, the person demanding or requesting aid-in-dying must be provided with a considerable amount of information. Merely providing the information, however, is not enough; the information must be provided in an intelligible manner. Therefore, whenever possible, the information should be provided in what generally is characterized as "layperson's terms."
The information that must be provided before a person demanding or requesting aid-in-dying can make a decision includes: the patient's medical diagnosis; the patient's prognosis if aid-in-dying is not provided; the nature of the proposed aid-in-dying procedure and the risks associated with the procedure; the fact that the probable result of providing aid-in-dying to the patient will be the patient's death and the feasible alternatives to the proposed aid-in- dying procedure. Under no circumstances, however, should the person providing the information feel constrained by the above requirements. These requirements are only the minimum information to be conveyed. The person providing the information should always communicate anything that might help the person demanding or requesting aid-in-dying to make an informed decision.
It also is essential that the person demanding or requesting aid-in- dying understand the information that is received. Consequently, whenever a person demands or requests aid-in-dying, adequate counseling is an absolute necessity. The degree of counseling required may vary depending on the circumstances of the case. For example, the degree of counseling may vary depending on whether a demand or request is being made, who is making the demand or request, and into which category the patient falls. See also Comment to Section 8-101.
According to Section 1-102(6), the purpose of providing counseling is fourfold. First, the counselor can explain the patient's prognosis to the person demanding or requesting aid-in-dying. Second, the counselor can help the person to understand the patient's prognosis. Third, the counselor can ensure the person understand that the probable result of providing aid-in-dying to the patient will be the patient's death. Finally, the counselor can explore the motivations underlying the decision to demand or request aid-in-dying. See Schoonheim, The Right to Die: The Euthanasia Discussion in the Netherlands, 4 J. Cancer Educ. 109, 112 (1989).
The counselor's role, however, is not to veto the decision to demand or request aid-in-dying. Even when the counselor believes that the decision to demand or request aid-in-dying is motivated improperly, the counselor can act only if the case involves a request for aid-in-dying, and then only by communicating her belief to the Aid-in-Dying Board.
An "emancipated minor," as defined in Section 1-102(11), includes any minor who has been released from parental custody and control by the custodial parent or by operation of law. Because statutes vary from state to state, the person providing aid-in-dying must verify independently that a minor who claims to be emancipated actually has been released from parental custody and control. In making this determination, the person providing aid-in-dying should consider the following factors: (1) the minor's age; (2) the minor's marital status; (3) whether the minor lives apart from the custodial parent; (4) whether the minor has graduated from high school; and (5) whether the minor is financially independent.
Section 1-102(12) defines health care facility, and Section 1-102(13) defines health care provider. The definitions of these terms are virtually identical. The only real difference between the two terms is that the term "health care facility" is limited to establishments, such as hospitals and nursing homes, while the term "health care provider" includes both natural persons and establishments.
The term "patient advocate" is defined in Section 1-102(20). A patient advocate, although designated by the [Department of Health], may be a representative of another State agency (for example, the Department of Human Services or the Department of Aging). It is a patient advocate's job to help patients ensure that their health care needs are met. Consequently, a patient advocate should act as a mediator between a patient and others to ensure that a clear understanding of the patient's opinions, feelings, and wishes are the basis for decisionmaking. In addition, for purposes of this [Act], a patient advocate should seek to ensure that a patient in a health care facility who executes a directive is acting in accordance with the patient's own wishes.
Section 1-102(25) defines a significant other as a person who currently is involved in a close personal relationship with a patient an who plays an important role in the patient's life. Although this term could be interpreted more broadly, it is meant to include only those people who share a demonstrable close relationship with the patient. For example, a significant other may be a person who lives with and shares a quasi-marital relationship with the patient, or, alternatively, a person with whom the patient has shared a longstanding and clearly demonstrable friendship.
Section 1-102(29) introduces the term "telostrician." This term was first coined by Roger Crisp and is derived from the Greek "telos," which means end. As envisioned by Mr. Crisp, the profession of telostrician involves the provision of patient care in the later stages of life. Crisp, A Good Death: Who Best to Bring It?, 1 Bioethics 74, 78-79 (1987). Ideally, a telostrician should be well versed in communication skills and medical ethics and should provide palliative care and pain relief until a patient decides that life is no longer worth living. At that point--if the patient has met all of the requirements of this [Act]--the telostrician should provide the patient with aid-in-dying. This [Act] has more limited vision of the telostrician's status: to administer a life-terminating drug, to supervise someone else in doing so, or otherwise to provide aid-in-dying.
Sections [1-102(16),] 1-102(28), and 1-102(30) define ["intolerable dependence,"] "technological dependence," and "terminal condition" respectively. To qualify for consideration under this [Act], a patient must fall within at least one of these categories.
[As defined in Section 1-102(16), intolerable dependence is highly subjective. Even so, the mere fact that the afflicted patient considers a dependency intolerable is not enough to make the patient intolerably dependent. The dependency must be permanent and irreversible, and the patient must require the assistance of others for substantially all "activities of daily living" as that term is defined in Section 1-102(1). These restrictions were placed on the "intolerably dependent" category because the drafters intended it to be a very narrow category. For example, whereas the drafters intended to include quadriplegia in the "intolerably dependent" category if accompanied by pain or suffering, the drafters did not intend to include migraine headaches.]
"Technological dependence" [unlike "intolerable dependence",] is defined in a more objective manner. A patient must meet two objective requirements to qualify as a technologically dependent patient under Section 1-102(28). First, the patient must be dependent on the continued application of life-sustaining treatment. Second, the patient must be unlikely to be freed from this dependence in the foreseeable future. According to Section 1-102(17), life- sustaining treatment means any medical procedure or intervention that utilizes mechanical or other artificial means to sustain, restore, or supplant a vital body function. Included within this definition are procedures meant to provide nutrition and hydration. However, although the use of a feeding tube would qualify as life-sustaining treatment under Section 1-102(17), the use of a fork or a spoon would not. Procedures meant to provide nutrition and hydration have been included in the definition of life-sustaining treatment because these procedures tend to be invasive. Moreover, these procedures--like mechanical respirators--can be used artificially to extend the life of a patient who has little or no hope of recovery.
In contrast, the administration of medication and the application of procedures meant to alleviate pain have been excluded from the definition of life-sustaining treatment. These procedures have been excluded for two reasons. First, these procedures normally are less invasive than procedures meant to provide nutrition and hydration. Second, the use of medication to treat life-threatening illness is pervasive, easily managed, and usually allows patient to live relatively normal lives. Thus, an insulin- dependent diabetic is not technologically dependent within the meaning of Section 1-102(28).
The final term defined in Section 1-102 is "terminal condition." According to Section 1-102(30), a terminal condition is an abnormal condition, other than one that can be controlled by the administration of medication, that is incurable, uncontrollable, and will, in the opinion of two physicians, probably result in death. Given this definition, the drafters recognize that the medical profession largely will control whether a patient who has an abnormal condition that is incurable and irreversible qualifies for aid-in-dying. It should be remembered, however, that the definition of terminal condition does not require death to be an absolute certainty. Rather, the definition merely requires that death be a reasonable probability given the patient's condition and the prevailing knowledge within the medical community.
The definition of terminal condition in Section 1-102(30) differs from the definition of terminal condition in most current statutes primarily because the definition makes no reference to time. Unlike the definition of terminal condition in Section 1-102(30), most statutory definition require death to be imminent, or to occur within a relatively short period of time. The drafters omitted this time requirement intentionally. Because a terminally ill patient probably will die--whether death is expected to occur within six months, one year, or ten years--the patient should be allowed to die with dignity as soon as all of the requirements of this [Act] have been met. Thus, the definition of terminally ill intentionally places the determination of when death is to occur into the hands of the patient who can, if the patient chooses, elect to forego burdensome and uncomfortable medical treatment. Placing the determination of when death is to occur into the hands of the patient will not result in a large number of terminally ill patients choosing death in lieu of medical treatment. Indeed, it is anticipated that most terminally ill patients will pursue medical treatment as vigorously as ever. The decision, however, is for patient, rather than the medical community, to make.
REQUIREMENTS FOR A VALID DIRECTIVE
'2-101 WHO MAY SIGN A DIRECTIVE
A competent adult may execute a directive.
Comment to Section 2-101
A competent adult, as defined in Section 1-102(2), who wishes to communicate an intent with respect to aid-in-dying may execute a directive. This person is called a declarant. The directive is operative whenever the declarant is unable to communicate her wishes respecting aid-in-dying.
Under this [Act], a directive permits a declarant to express his wish to receive or not to receive aid-in-dying if the declarant is or later becomes terminally ill or technologically dependent. [A directive cannot be made to provide for aid-in-dying for a person with an intolerable dependence.]
Written directives allow others, including surrogates and Aid-in-Dying Boards, to ascertain a declarant's wishes concerning aid-in-dying. Health care professionals and attorneys should inform patients or clients of their right to execute a directive. They also may assist patients and clients in the preparation of directives and, if desired, the recording of directives.
'2-102 FORMAL EXECUTION REQUIREMENTS
(a) A directive must be signed by the declarant, or in the declarant's name by some other person acting in the declarant's presence and at the declarant's express direction, and it shall be signed by at least two witnesses each of whom witnessed either the signing of the directive or the declarant's acknowledgement of the directive or the signature, and each of whom shall attest, to the best of their knowledge and belief, that the declarant is competent and under no duress to sign the directive.
(b) If the declarant is an inpatient in a health care facility, one of the witnesses to the directive must be a patient advocate or ombudsperson designated by the [Department of Health] and not employed by the health care facility.
(c) A person can be a witness to a directive in which that person is designated as a surrogate.
Comment to Section 2-102
This [Act] creates minimum formalities for the execution of a valid directive. Section 2-102(a) sets forth the execution formalities for a directive and is modeled after Section 2-502 of the Uniform Probate Code. See Unif. Probate Code ' 2-502 (1988). The directive must be executed by the declarant and by two witnesses. Although both witnesses must sign in the presence of the declarant, they need not sign in the presence of each other. If a declarant has signed the directive prior to the witnesses' appearing before the declarant, the declarant may acknowledge to the witnesses his or her previously affixed signature on the directive in lieu of signing in each witness' presence. The absence of more elaborate witness requirements relieves physicians and telostricians of the inappropriate and perhaps impossible burden of determining whether more formal legal witness requirements have been met.
The [Act] eliminates the disqualification of interested persons as witnesses. The purpose is not to foster the use of interested witnesses, but to prevent the penalization of innocent family members who witness a directive or the invalidation of home-drawn directives witnessed only by family members. Comment to Section 2-505 of the Uniform Probate Code notes that the disqualification of interested witnesses has not succeeded in preventing fraud and undue influence; in most cases of undue influence, the influencer is careful not to sign as a witness but to use disinterested witnesses. See Unif. Probate Code ' 2-505 comment (1987). A surrogate may serve also as one of the witnesses to a directive.
If the declarant is a patient in a health care facility, one of the witnesses to the directive must be a patient advocate or ombudsperson who is not employed by the facility. This requirement recognizes that some patients in skilled nursing facilities may be so insulated from a voluntary decisionmaking role by virtue of the custodial nature of their care as to require special assurance that they are capable of willfully and voluntarily executing a directive. A patient advocate is a person, independent from the health care facility where the patient is receiving care, who has the duty to speak on behalf of a patient to ensure that the patient's wishes, concerns, and desires are articulated to and addressed by the health care facility. A patient advocate acts as a mediator between the patient and others to assure that a clear understanding of the patient's opinions and feelings forms the basis for decisionmaking.
'2-103 EFFECTIVENESS OF DESIGNATION OF A SURROGATE
(a) The designation of one or more surrogates or a series of surrogates in a directive is effective only if the directive subsequently is signed by the surrogate or surrogates who state that they have read the directive, understand its terms, and accept the responsibilities of a surrogate.
(b) If more than one surrogate is designated to act concurrently, the decision of the first person named in the directive as a surrogate controls in the event of any disagreement among the surrogates, unless the directive otherwise provides.
(c) Dissolution of marriage terminates the designation of the declarant's former spouse as a surrogate. In the event the declarant wishes the former spouse to continue to act as a surrogate, both the declarant and the former spouse must sign a statement to that effect. In the absence of this statement, the directive shall have the same effect as if the spouse had not been named as surrogate.
Comment to Section 2-103
A declarant may designate a trusted person as a surrogate. The surrogate determines whether the declarant will be provided aid-in-dying if the declarant becomes incompetent to express his own wishes.
It is the surrogate's duty to make the medical treatment personnel and the health care facility aware of the directive and its contents, assure the directive is followed, demand or refuse aid-in-dying, and, if demanded, indicate when and where aid-in-dying will be provided. The surrogate must act in accordance with any of the declarant's expressed wishes.
The declarant may name several persons to act jointly as surrogates. The drafters hope all the surrogates will discuss the situation completely and all will agree on the action to be taken. If no agreement can be reached, however, the first-named surrogate will retain the ultimate responsibility for carrying forth the information and decisions unless the directive specifies otherwise.
Alternatively, several surrogates may be named to act sequentially. If the first-named surrogate is unable to fulfill the duty, the second surrogate becomes responsible, and so on. In the event all named surrogates are unable to fulfill their responsibilities, the Aid-in-Dying Board may use the directive as evidence of the declarant's intent.
A surrogate may resign at any time and should resign if the surrogate does not feel capable of carrying out the declarant's wishes. If the surrogate does resign for any reason, the Aid-in-Dying Board may use the directive as evidence of the declarant's intent.
Because of the awesome responsibilities a directive imposes upon a surrogate, Section 2-103(a) provides that the designation of a surrogate is effective only if the surrogate, or series of surrogates, consents. This consent must be evidenced by the surrogate's signature on the directive attached to a statement that the surrogate has read the directive, understands its terms, and accepts the responsibilities of surrogate.
In the event of dissolution of marriage, it is reasonable to assume that the declarant no longer wishes any former spouse who had been designated to act as surrogate to continue in that capacity. Therefore, Section 2-103(3) provides that in the event the declarant fails to change the directive, a presumption is created that the designation of the former spouse as surrogate is revoked. The presumption may be rebutted expressly by a written declaration stating the intent to retain the former spouse as the surrogate. The written statement to retain the former spouse as surrogate should state effectively that "I wish to retain [my former spouse] to act as my surrogate under this directive." Ordinarily, this writing will postdate the decree of dissolution. Without a statement retaining the former spouse as the surrogate, the directive will be treated as though no surrogate had been named.
'2-104 DURATION OF A VALID DIRECTIVE
A directive is valid for  years following the date of its execution, unless the declarant states in the directive that it shall be valid for the declarant's life or for some other fixed period of time.
Comment to Section 2-104
This [Act] recommends a directive be valid for a period of  years. A [ten-year] period is a compromise between a shorter time period, which requires frequent re-executions of a directive, and a longer period, which does not require re-executions, but during which the directive may become stale or cease to express accurately the declarant's wishes. Feelings and attitudes concerning aid-in-dying change. Re-executions encourage declarants to review and update directives to reflect their current wishes and attitudes.
The possibility of executing a directive for life or for some other fixed period is permitted. This other period may be for more or less than ten years or determined by the occurrence of a stated event or contingency.
'2-105 EFFECT OF DIRECTIVE EXECUTED OUTSIDE OF THE [STATE]
A directive validly executed outside of this [State] in compliance with the law of the place where it was executed or of this [State] or of the place where the declarant resided at the time the directive was executed is valid in this [State] and is of the same force and effect as if it were executed in this [State] unless the directive otherwise provides. The directive will be followed as closely as possible, but will be governed by the substantive law of the enacting state.
Comment to Section 2-105
Because of the fairly long duration period of directives and the mobility of the population, many declarants will execute a directive in one state but have need for it in another state. Section 2-105 provides that out- of-state directives will be honored in this[, the enacting,] [State] to the extent consistent with the substantive law of this[, the enacting,] [State].
This [State's] substantive law governs such things as surrogates, methods of aid-in-dying, and duration of the directive. Should this [State] allow only withdrawal of life-supporting treatment, a directive executed in a state allowing the provision of a qualified drug to aid the dying process would not be honored in this [State] because no health care provider could supply the drug to the declarant. This rule parallels the law of wills.
'2-106 DELIVERY OF DIRECTIVE TO PRIMARY PHYSICIAN OR HEALTH CARE FACILITY
(a) If a directive is communicated to the declarant's primary physician or to a health care facility:
(1) it must be made a prominent part of the declarant's medical records; and
(2) the primary physician and the health care facility may presume, absent contrary evidence, that the directive was executed validly and has not been revoked.
(b) A copy of any directive that has been communicated to a primary physician shall be delivered by the primary physician to any health care facility in which the primary physician knows the declarant is an inpatient.
(c) If a health care provider has reason to believe from the driver's license of an incompetent patient, or for any other reason, that the patient filed a directive with the [Department of Health], the health care provider shall request, as soon as may be practicable, a copy of any directive and its revocation, if any, from the [Department of Health] if the health care provider has a reasonable belief that the patient would qualify for aid-in-dying.
Comment to Section 2-106
Knowledge of the directive is critical to its effectuation. Although this [Act] does not require that a directive be delivered to any person or filed as a matter of public record, it is advisable for a declarant to communicate information concerning the execution of a directive to all interested persons. Those persons who may demand or request aid-in-dying on behalf of a declarant under Sections 5-102 or 6-102 may wish to review the declarant's directive to decide if the declarant would wish aid-in-dying if the declarant's current wishes could be presently communicated. It is the moral responsibility of the declarant to provide the attending physician, the surrogate or surrogates, and the [Department of Health] with copies of the directive.
If a copy of a directive is communicated to the declarant's primary physician or to a health care facility, the directive must be made a prominent part of the declarant's medical record. If a copy of a directive is delivered to the declarant's primary physician, that physician must forward copies of the directive to health care facilities in which the physician knows the declarant is a patient. These facilities shall make the directive a prominent part of the declarant's medical record. Later executed directives shall be treated in the same manner.
A directive may be presumed valid unless contrary evidence is known. This presumption ensures that physicians and health care facilities will not be forced to act as investigators or judges. See Comment to Section 2-102 concerning formal execution requirements.
Many states allow declarations of intent to donate organs to be noted on an individual's driver's license. Similarly, under Section 2-106(c), the existence of a directive may be indicated on a declarant's driver's license. Section 16-105 requires the [Department of Transportation] to issue driver's licenses that allow a declarant to indicate that a directive has been filed with the [Department of Health]. If a health care provider has reason to believe a patient has filed a directive with the [Department of Health], the health care provider should request a copy of the directive and its revocation, if any, from the [Department of Health]. The provider's knowledge may come from the patient's driver's license or from any other source.
'2-107 DELIVERY TO AND COPY OF DIRECTIVE IN [STATE] REGISTRY
(a) A copy of a directive may be registered with the [Department of Health] by the declarant or by another acting under the declarant's express direction.
(b) Upon written request and after payment of such reasonable fee as determined by the [Department of Health], copies of a directive and revocation shall be delivered to the declarant, the surrogate named in the directive, the declarant's spouse, significant other, child, parent, sibling, grandparent, grandchild, or legal guardian, and the primary physician or appropriate official of any health care facility in which the declarant is a patient.
(c) If a copy of a directive is filed with the [Department of Health], it shall provide the declarant with a receipt evidencing that the directive has been filed with the [Department of Health].
Comment to Section 2-107
Section 15-105(c) requires the [Department of Health] to create a state registry of directives to allow health care providers to determine if a patient has a directive and to ascertain the contents of a directive. A state registry creates easy access to the information contained in a directive. Those professionals working with individuals who execute directives should inform them about filing directives in the state registry to assure that information contained in the directive is available when needed.
Once a directive is registered with the [Department of Health], parties named in Section 2-107(b) may obtain copies of the declarant's directive to allow the making of informed decisions or requests to the Aid-in- Dying Board. Section 16-107 permits the [Department of Health] to waive fees under certain circumstances.
If a directive is filed with the [Department of Health], the [Department] shall issue the declarant a receipt evidencing the filing. The declarant can then present this receipt to the [Department of Transportation] for the purpose of having that Department affix a sticker to the declarant's driver's license indicating that a directive has been filed with the [Department of Health].
REVOCATION OF DIRECTIVE
'3-101 MANNER OF REVOCATION
A directive may be revoked at any time by the declarant, without regard to the declarant's mental state, by the execution of a subsequent directive, by physical destruction of the directive by the declarant or someone acting under the declarant's express direction accompanied by an intent to revoke, by written notice of revocation, or by verbal expression of revocation.
Comment to Section 3-101
Section 3-101 sets forth the manner in which and by whom a directive may be revoked. A declarant should be able to revoke a directive freely and easily without procedural complications. A revocation may be effected in writing, orally, by physical defacement or destruction of the directive, or by physical conduct indicating an intention to revoke. Only the declarant or someone acting under the express direction of the declarant may revoke a directive by its physical destruction.
Amendments to a directive may be incorporated into a newly executed directive. To do so would decrease confusion about which provisions of the directive are in effect at any given time.
'3-102 COMMUNICATION OF REVOCATION
(a) A person other than a declarant who knows of the revocation of a directive and has reason to believe that fact has not been communicated to the declarant's primary physician or to a health care facility in which the declarant is a patient must communicate this knowledge to the primary physician or health care facility.
(b) If knowledge of the revocation of a directive is communicated to the declarant's primary physician or to any health care facility:
(1) A statement of this fact must be made a prominent part of the declarant's medical records and attached to the directive if the directive is part of the declarant's medical records; and
(2) The primary physician and the health care facility may presume, absent contrary evidence, that the revocation was effective and the directive has been revoked.
(c) If knowledge of the revocation of a directive is communicated to the declarant's primary physician or to any health care facility, the primary physician or health care facility shall notify the [Department of Health] of the revocation.
Comment to Section 3-102
Section 3-102(a) imposes a duty on a person other than a declarant who knows a declarant's directive has been revoked to communicate that fact to the declarant's primary physician or health care facility in which the declarant is a patient if the person has reason to believe the fact of revocation has not been communicated to them. Few persons should be expected to be forced to comply with this duty since it may reasonably be expected that the declarant will notify his or her primary physician of the revocation. Furthermore, the primary physician will be involved in most cases in which the possibility of aid-in-dying arises.
If possible, a declarant should notify the [Department of Health] about the revocation if the declarant previously submitted the declarant's directive to the [Department]. Placing the burden on the declarant to notify the [Department] often is the most expedient way to assure the revocation will be discovered and its existence communicated to future health care personnel.
A primary physician or health care facility having knowledge of the execution of a directive, but no knowledge that the directive has been revoked, can assume that the directive is in effect and, therefore, is not liable for actions taken consistent with that assumption. On the other hand, a primary physician or health care facility with knowledge that a directive has been revoked is liable for acting in a manner inconsistent with that knowledge.
If a primary physician or health care facility knows that a directive has been revoked, this fact must be made a prominent part of the declarant's medical records and attached to the directive if it is part of the medical records. This is intended to assure that if the directive is found in the medical records, the statement indicating a revocation also will be found. Thus, there should be no doubt as to the revocation, and the fact of revocation is readily available to all persons treating the declarant.
The primary physician or health care facility also is required to notify the [Department of Health] of the revocation, and the revocation shall be recorded in the registry so that future health care providers can learn of the revocation.
In order to protect the declarant, penalties for destruction or concealment of a revocation are provided in Section 14-104.
DEATH WITH DIGNITY MODEL DIRECTIVE
This Directive permits you to specify whether you would wish to receive aid- in-dying in the event you are or become terminally ill or technologically dependent. Aid-in-dying includes both the withholding or withdrawal of life- sustaining treatment as well as the provision of a life-terminating drug.
In this directive you can express your wish that under no circumstances will you receive aid-in-dying. If that is your wish you need complete only Section 1 and sign the directive at the end in the space provided.
Alternatively, you can express your wishes to receive aid-in-dying in the event you are or become terminally ill, or technologically dependent, or both. Also, you can name another person, called a surrogate, to act for you in the event you are unable to express your wishes.
Space is provided on the form to permit you to write any specific wishes you have.
This form is not valid, however, unless you sign it at the end and have it witnessed. If you are now a patient in a health care facility, one of the two witnesses must be a patient advocate or ombudsperson.
You may file a copy of this directive with the [Department of Health] for the State of ______________________ by mailing a copy of the directive to ________________, ________________. If you register your directive, other people, including your family and physicians, can obtain a copy of it to make sure they are following your instructions. You also should give a copy of this directive to your primary physician and any person named in this directive as a surrogate or as a person who is authorized to request aid-in-dying for you.
If you change your mind about anything in the directive, you may amend it by filling out, signing, and having witnessed a new directive. You also may revoke this directive at any time by destroying it, by writing on it that you no longer want it to be in effect, by completing the revocation section, by telling someone else you no longer want the directive to be effective, or by telling someone else to destroy or revoke the directive for you. You should attempt to tell someone you are revoking your directive if you are able to. If you have registered your directive with the [State] [Department of Health] registry, you should notify the registry of your revocation if you are able. You should also notify anyone who knows you signed a directive that you have revoked it.
I, __________ (insert your name), residing at _________________________, _______________________________________ declare that:
SECTION 1 GENERAL DIRECTIONS RESPECTING AID-IN-DYING INITIAL A OR B BUT
(If you initial (a) do not complete Sections 2 through 4)
a. ________ I do not want aid-in-dying.
b. ________ I want aid-in-dying as described below.
"Aid-in-dying" includes the withdrawing or withholding of life-sustaining treatment. "Life-sustaining treatment" means a medical procedure or intervention, including nutrition and hydration, which uses mechanical or other artificial means to sustain, restore, or supplant a vital body function and which, when administered to a terminally ill or technologically dependent patient, serves only to prolong the dying process. However, neither the administration of medication nor the application of a procedure to alleviate pain is considered life sustaining treatment. The withdrawal or withholding of life sustaining treatment will not necessarily result in immediate death.
"Aid-in-dying" also includes the administration of a drug that is prescribed by the [Department of Health] for the purpose of inducing death in a swift, painless, and humane manner. The administration of this drug will result in immediate death.
SECTION 2 TERMINAL CONDITION
Initial and complete 1 or 2 or 3.
You have a "terminal condition" if you have an abnormal condition, other than one that can be controlled by the administration of medication, which is incurable and irreversible and will, in the opinion of two physicians, probably result in your death.
You may wish to appoint a surrogate to act for you. A "surrogate" is a person whom you authorize to make decisions for you concerning the administration of aid-in-dying if you become incompetent. Your surrogate has the right to demand that you receive aid-in-dying if that demand is consistent with your intent as expressed in this directive. You may wish to name multiple surrogates or successor surrogates. If you name multiple surrogates to act together and they are unable to agree, the decision of the first surrogate you name controls unless this directive provides otherwise. If you wish to name a surrogate, you should complete Section 4 of this directive.
If you do not name a surrogate and become incompetent, aid-in-dying may be requested on your behalf by your spouse or significant other, your child, your parent, your sibling, your grandparent, your grandchild, or your legal guardian. Aid-in-dying also may be requested by any of the persons you designate below. Requests are made to a local board that decides whether aid- in-dying should be provided. This directive provides you an opportunity to express your intent to receive or not to receive aid-in-dying. The board must see that your intent is carried out.
1. ________ If I am diagnosed with a terminal condition by two physicians but am no longer capable of expressing my wishes (INITIAL (a), (b), or (c)):
(a) ________ I request that no life-sustaining treatment be used to prolong the dying process.
(b) ________ I request that a qualified drug be given to end my life humanely.
(c) ________ I direct my primary physician or ___________________________ (name or title) to request aid-in-dying on my behalf before an Aid-in-Dying Board.
[Insert any special instruction to the surrogate.]
2. ________ I am now terminally ill and I direct aid-in-dying under the following circumstances: [Insert special instructions.]
3. ________ I do not want aid-in-dying if I have a terminal condition.
SECTION 3 TECHNOLOGICALLY DEPENDENT
Initial and complete 1 or 2 or 3.
You are "Technologically Dependent" if you can remain alive only by the continued administration of life sustaining treatment, without any reasonably foreseeable hope of future freedom from these treatments. "Life sustaining treatment" means a medical procedure or intervention, including nutrition and hydration, that utilizes mechanical or other artificial means to sustain, restore, or supplant a vital body function and that, when administered to a terminally ill or technologically dependent patient, serves only to prolong the dying process. However, neither the administration of medication, nor the application of a procedure to alleviate pain, is considered life-sustaining treatment.
You may wish to appoint a surrogate to act for you. A "surrogate" is a person who you authorize to make decisions for you concerning the administration of aid-in-dying if you become incompetent. Your surrogate has the right to demand that you receive aid-in-dying if that demand is consistent with your intent as expressed in this directive. You may wish to name multiple surrogates or successor surrogates. If you name multiple surrogates to act together and they are unable to agree, the decision of the first surrogate you name controls unless this directive provides otherwise. If you wish to name a surrogate, you should complete Section 4 of this directive.
If you do not name a surrogate and become incompetent, aid-in-dying may be requested on your behalf by your spouse or significant other, your child, your parent, your sibling, your grandparent, your grandchild, or your legal guardian. Aid-in-dying also may be requested by any of the persons you designate below. Requests are made to a local board that decides whether aid- in-dying should be provided. This directive provides you an opportunity to express your intent to receive or not to receive aid-in-dying. The board must see that your intent is carried out.
1. ________ If at any time after I sign this directive I become or would have to become technologically dependent and thereafter I am no longer capable of expressing my wishes (INITIAL (a), (b), or (c)):
(a) ________ I request that life sustaining treatment be withdrawn or withheld.
(b) ________ I request that a qualified drug be given to end my life humanely.
(c) ________ I direct my primary physician or__________ (name or title) to request aid-in-dying on my behalf before an Aid-in-Dying Board.
[Insert any special instruction to the surrogate.]
2. ________ I am now technologically dependent and I direct aid-in-dying under the following circumstances: [Insert special instructions.]
3. ________ I do not want aid-in-dying if I am technologically dependent.
SECTION 4 NAMING A SURROGATE
You may wish to appoint a surrogate to act for you. A "surrogate" is a person whom you authorize to make decisions for you concerning the administration of aid-in-dying if you become incompetent. You may wish to name multiple surrogates or successor surrogates. If you name multiple surrogates to act together and they are unable to agree, the decision of the first surrogate you name controls unless this directive provides otherwise.
A. My surrogate shall act if I am unable to express my wishes whether to receive aid-in-dying if:
(a) ____________ I have a terminal condition (See Section 2, above).
(b) ____________ I am technologically dependent (See Section 3, above).
(c) ____________ I am either terminally ill or technologically dependent.
B. I appoint ____________________ (insert name) and ____________________ (insert another name if multiple surrogates are named) as my surrogate(s), to determine, except as otherwise stated below, when, how, and under what circumstances I shall receive aid-in-dying. If ____________________ or ____________ fail(s) to act as surrogate, I appoint ____________ (insert name) or ____________________ (insert another name), in that order, as a successor surrogate(s).
[Insert any special instruction to the surrogate.]
These instructions might include the names of persons with whom the surrogate should consult and special circumstances the declarant wishes the surrogate to take into account in making a decision respecting aid-in-dying.
SECTION 5 OTHER PROVISIONS
Initial those provisions that are applicable.
1. If I am pregnant:
(a) ______ My pregnancy shall have no effect on this directive.
(b) ______ I shall not receive aid-in-dying.
(c) ______ The following special instructions shall apply:
[Insert special instructions.]
2. This directive is effective for:
(a) ______ Ten years
(b) ______ My life
(c) [Insert ______ years or special circumstances.]
3. If I can express my own health care decisions, this directive is ineffective.
SECTION 6 OTHER INSTRUCTIONS
Insert any special provisions you would like.
In this space you can provide other special instructions you want. For example, you may want to state that certain persons cannot initiate the aid-in- dying process or should not be consulted by the Aid-in-Dying Board when a request for aid-in-dying has been made. Also, you may want to include names of family members or other persons that are to be notified when the aid-in-dying process is instituted.
Date: ______ (day) ______ (month) ______ (year)
Declarant My address is: ____________________________________________________ _______________________________________________________________________________ ______________________________________________________________________________
We, the undersigned witnesses, one of whom, as indicated by his or her signature, is an ombudsperson or patient advocate if declarant is in a health care facility when this directive is executed, attest that to the best of our knowledge and belief the declarant is competent and under no duress to sign the foregoing directive and that the declarant signed this directive or acknowledge this directive or his or her foregoing signature to us.
I (we) have read this directive, understand its terms, and accept the responsibilities of surrogate(s).
Dated: ______ (month) ______ (day) ______ (year)
Signed by ___________________________________________________________________
REVOCATION OF DIRECTIVE
On this ___ day of ________, ___, I ____________, revoke this directive. ___ Signature of Declarant ________________________________________________________
Comment to Article 4
Article 4 codifies a model directive. Although the form may be followed, its use is not mandatory. Thus, a more detailed and elaborate form may be constructed and is valid so long as it complies with the execution requirements of Article 2. The "home grown" directive should include information on how the directive can be revoked. The directive also should inform the declarant of his or her right to register the directive with the State Registry. The State Registry's address should be included so that a declarant may send a copy there if she so desires.
The language of the Model Directive is simple and straightforward to facilitate understanding by the general population. After reading the instructions included with each section of the Model Directive, the declarant should initial each statement that expresses the declarant's wishes. Definitions are provided to clarify the scope of the separate provisions. Spaces are provided so that the declarant may include specific instructions as part of the directive. This encourages the declarant thoughtfully to consider circumstances under which aid-in-dying is or is not desired. Space is provided in the Model Directive for a surrogate to signify acceptance of the designation as required by Section 2-103(a).
In Section 1 of the Model Directive, the declarant clearly states his intention to receive or not to receive aid-in-dying. A declarant who does not want aid-in-dying need not complete the remaining sections of the directive, but must sign the directive and have it witnessed.
This directive should be recorded with the declarant's medical records. The validity of the directive, however, does not depend upon such recording. If a case were to go to an Aid-in-Dying Board, a valid directive would be presented to the Board as evidence of the declarant's intent. This [Act] recognizes a declarant's autonomy with regard to health care decisions, including a declarant's decision never to have aid-in-dying administered.
In Section 4 of the Model Directive under the special instructions to the surrogate, the declarant may want to include specific detailed guidelines that the surrogate must follow in deciding when to initiate the aid-in- dying process. Alternatively, the declarant may want to give the surrogate very broad discretion. By providing a space for special instructions, this [Act] enables the declarant more fully to express her intent with regard to what role the surrogate should play in the aid-in-dying process.
Although a declarant can include anything he wishes in the directive, no instruction is enforceable that conflicts with any applicable provision in the [Act]. [For example, a declarant could include an instruction requesting aid- in-dying should he become incompetent while suffering an intolerable dependence. This instruction would not be enforceable, however, because Section 7-101(a) states that only a competent adult can make a request for aid- in-dying while suffering from an intolerable dependence.]
Section 5 of the Directive recognizes pregnancy as a highly individual experience. The directive gives a woman an opportunity to indicate her specific instructions should the directive become operative while she is pregnant. Absence of instruction in this area may indicate that the declarant desires that the relevancy of her pregnancy to the aid-in-dying process be determined by the surrogate or the Aid-in-Dying Board. A woman may indicate that if she becomes terminally ill and incompetent, she desires aid-in-dying, and the fact that she is pregnant should be disregarded. Alternatively, a woman may indicate that her directive will not be operative in the event that she is pregnant. This [Act] recognizes a woman's autonomy with regard to her health care decisions, notwithstanding pregnancy. This should not be considered inconsistent with the Supreme Court's decision in Roe v. Wade, 410 U.S. 113 (1973), or any subsequent decisions applicable to abortion. The drafters do not want courts to mistake aid-in-dying for abortion of the fetus. This comment urges courts to see these as separate issues.
A surrogate need not sign the Surrogate Statement at the time the directive is executed, but must sign and date the directive as an indication of accepting the responsibility of surrogacy. Of course, it would make sense for the declarant to discuss these matters at length with the surrogate(s) before executing the directive. In the absence of the surrogate's signature, the directive is communicated to the Aid-in-Dying Board as evidence to determine the declarant's intent as though no surrogate had been appointed.
In Section 6 of the Model Directive, a space is provided for the declarant to indicate other special instructions that should be taken into account with regard to the declarant's intent concerning the aid-in-dying process. For example, a declarant may want to state that certain persons cannot initiate the aid-in-dying process or should not be consulted by the Aid- in-Dying Board when a request for aid-in-dying has been made. The declarant may want to include the names of family members or other persons who are to be notified when the aid-in-dying process is initiated.
AID-IN-DYING FOR A TERMINALLY ILL PATIENT
'5-101 DEMAND FOR AID-IN-DYING FOR TERMINALLY ILL PATIENT
(a) Aid-in-dying for a terminally ill patient may be demanded under this section:
(1) By that patient if the patient is a competent adult;
(2) On behalf of an incompetent, terminally ill patient by a surrogate named by that patient in a directive;
(3) On behalf of a terminally ill patient under the age of 6 by the patient's custodial parents or, if only one parent has custody, by the custodial parent after the custodial parent has made reasonable efforts to consult with the noncustodial parent; or
(4) Jointly by a patient who is a minor 6 years or older and the patient's custodial parents or, if only one parent has custody, jointly by the patient and the custodial parent after the custodial parent has made reasonable efforts to consult with the noncustodial parent.
(b) Subject to the provisions of Article 8 (specifying general limitations and conditions), a demand for aid-in-dying for a terminally ill patient complying with the provisions of subsection (a) of this section shall be administered in accordance with the provisions of Article 10 of this [Act].
Comment to Section 5-101
Section 5-101(a) lists the classes of terminally ill patients who can demand aid-in-dying. Before a patient can demand aid-in-dying a diagnosis of a terminal illness must be made. A terminal illness is defined in Section 1- 102(30). After diagnosis, a patient who demands aid-in-dying must act voluntarily and in an informed manner as required by Section 8-102. This includes receiving counseling. See Section 1-102(6). After satisfying these requirements, a competent adult patient can demand aid-in-dying under Section 5-101(a)(1), subject to the general restrictions and limitations of Article 8.
The word demand has been used thoughtfully in this section (and in other sections of the [Act]) to signify that terminally ill patients have the right to receive aid-in-dying. This right cannot be denigrated by others who disagree with the patient. The right to demand aid-in-dying flows from legal theories of personal autonomy and the inherent right to privacy. See, e.g., Griswold v. Connecticut, 381 U.S. 479, 484-85 (1965) (right of privacy invalidates statute prohibiting contraceptive use); In re Quinlan, 70 N.J. 10, 40-41, 355 A.2d 647, 663-64 (1976) (discussing right to terminate medical treatment). Because a terminally ill patient's rights to autonomy and privacy outweigh the state's interest in maintaining the patient's life, the patient's wishes should be carried out with minimal difficulty. Therefore, a terminally ill patient's valid demand for aid-in-dying cannot be reviewed by the Aid-in-Dying Board.
Section 5-101(a)(2) allows a surrogate to demand aid-in-dying for a once-competent terminally ill patient who is no longer competent. The surrogate acts in the place of the terminally ill patient provided the surrogate fulfills the requirements of Section 2-103. The surrogate may make any decision the patient could have made if the patient were competent. Because the terminally ill patient must acquire the surrogate's acceptance to serve as surrogate, it is presumed that the surrogate also has acquire the necessary information from the patient to know the patient's wishes regarding medical care. Under Section 13-101 the surrogate is immune from liability for the decision.
Section 5-101(a)(3) addresses the situation of very young terminally ill children. Studies have shown that children below the age of six usually do not understand the nature and implications of their illness. See Comment to Section 5-102(a)(3). Because of the young child's presumed inability to understand her condition, parents alone can demand aid-in-dying on the child's behalf. This provision presumes that parents act in the best interests of their children. If the parents disagree, however, aid-in-dying can be requested and then ordered only by an Aid-in-Dying Board. To order aid-in- dying for a child, the Board must determine that providing aid-in-dying to the terminally ill minor would be consistent with the minor's intent. As noted in the Comment to Section 9-103, ascertaining the intent of very young children usually will be impossible. Thus, if parents disagree, aid-in-dying is not available under this [Act]. Furthermore, even if the minor were able to express an intent, the younger the minor, the less likely the minor's request can be found to be voluntary and given in an informed manner as required by Section 8-102.
When only one parent legally is responsible for the health care decisions of a terminally ill child, the custodial parent must attempt to notify the noncustodial parent before demanding aid-in-dying. This requirement allows a noncustodial parent to have an opportunity to respond to, but not to overrule, the demand. Ideally, both parents should be involved in the decision to demand aid-in-dying on behalf of the terminally ill child. However, the notification process must not be so burdensome that a disinterested or missing parent could unduly delay a demand for aid-in-dying, resulting in extended suffering for the child. Often only the custodial parent knows what is reasonable regarding notification of the other parent in light of the particular family situation. Thus, in particular case the custodial parent should judge whether reasonable efforts to contact the other parent have occurred. Minimally, however, these efforts would include an attempt to reach the noncustodial parent by way of certified mail or telegram if the whereabouts of the other parent are known. Before aid-in-dying can be demanded when the noncustodial parent cannot be notified, the custodial parent should verify, in writing, that reasonable efforts have been made to notify the noncustodial parent.
When the terminally ill child is six years of age or older, Section 5- 101(a)(4) requires that the child and both parents (or the custodial parent) jointly demand aid-in-dying. A child six years of age or older has a greater understanding of his medical condition than a younger child and should participate in the decision to demand aid-in-dying. Ideally the child and parents should act together in choosing the best course of action. Should, however, either or both parents disagree with the child's wishes, the child may still request aid-in-dying under Section 5-102(a)(3). If the child request aid-in-dying, the case will be submitted to the Aid-in-Dying Board for a decision. In no situation can a child receive aid-in-dying against her wishes.
Again, as in Section 5-101(a)(3), sometimes only one parent has legal custody of a terminally ill child and is responsible for the child's health care decisions. In this situation, reasonable efforts (as defined above) to contact the noncustodial parent must be made. This requirement allows the noncustodial parent an opportunity only to respond to the demand made by the child and the custodial parent, not to veto it. The custodial parent has the ultimate parental voice regardless of the noncustodial parent's wishes.
Section 5-101(b) conditions all demands on the restrictions and limitations of Article 8. This is to assure that those patients, surrogates, or parents of terminally ill children demanding aid-in-dying understand the implications of their decisions and that no one receives aid-in-dying against his wishes.
'5-102 REQUEST FOR AID-IN-DYING FOR TERMINALLY ILL PATIENT
(a) Aid-in-dying may be requested for a terminally ill patient who is:
(1) An incompetent patient without a directive;
(2) An incompetent patient with a directive under which there is no surrogate empowered to act at the time the request is made;
(3) A minor 6 years or older who requests aid-in-dying pursuant to subsection (b)(1) of this section when
(i) any custodial parent disagrees with the minor or the other custodial parent,
(ii) both parents are minors,
(iii) both parents are incompetent, or
(iv) both parents are dead; or
(4) A minor under the age of 6 when
(i) any custodial parent disagrees with the other custodial parent,
(ii) both parents are minors,
(iii) both parents are incompetent, or
(iv) both parents are dead.
(b) Unless the patient's directive otherwise provides, aid-in-dying for a terminally ill patient may be requested under this section by:
(1) A minor designated in subsection (a)(3) of this section;
(2) The spouse, significant other, child, parent, sibling, grandparent, grandchild, or legal guardian of the patient on whose behalf aid-in-dying is sought; or
(3) Any other person designated in a directive of the patient.
(c) A request for aid-in-dying made by an individual designated in subsection (b) of this section shall be referred to the Aid-in-Dying Board established under Article 9.
(d) Subject to the provision of Article 8 (specifying general limitations and conditions), an order of the Aid-in-Dying Board entered pursuant to the provision of Article 9 of this [Act] granting a request for aid-in-dying shall be administered in accordance with the provision of Article 10 of this [Act].
Comment to Section 5-102
Section 5-102(a) lists the four classes of terminally ill patients for whom aid-in-dying may be requested. Request for aid-in-dying can be made to the Aid-in-Dying Board by those persons listed in Section 5-102(b).
Under Section 5-102(a)(1) an incompetent patient who has not executed a directive qualifies as a patient for whom aid-in-dying can be requested. As required by Article 9, however, any request to an Aid-in-Dying Board for the patient to receive aid-in-dying can be granted only if the Board determines that the patient intended to receive aid-in-dying. If the Board determines that the patient did not intend to receive aid-in-dying the Board must deny the request. Thus, this provision, in conjunction with Article 9, recognizes that many individuals will never execute a directive expressing their wishes concerning aid-in-dying despite having indicated their thoughts and opinions in some other manner to those close to them. A patient in this situation who is no longer competent still has the opportunity for the Aid-in-Dying Board to consider the evidence of her intent if a person listed in Section 5-102(b) request aid-in-dying on behalf of the patient.
Section 5-102(a)(2) addresses the situation of the incompetent patient who has executed a directive that either fails to name a surrogate or names a surrogate who no longer can or is willing to fulfill that role. This section allows the Aid-in-Dying Board to give effect to that patient's wishes as expressed in the directive. Any evidence indicating contrary wishes by the patient subsequent to the directive will be accorded due weight because the Aid-in-Dying Board is required by Article 9 to issue only those orders that are consistent with the patient's intent. Under Section 8-101, uncontroverted evidence that the patient would not want to receive aid-in-dying would require the Board to refuse aid-in-dying.
Section 5-102(a)(3) allows an unemancipated minor six years of age or older to petition the Aid-in-Dying Board for an aid-in-dying order whenever either parent is unwilling to agree that aid-in-dying should be provided the terminally ill minor patient. Thus, when one of the custodial parents disagrees with the child's wish to receive aid-in-dying, that parent does not have an absolute veto over the child. Rather, the decision goes to the Board which in turn considers all of the competing interests involved. Similarly, a Board determination is needed when both parents are unemancipated minors, both parents are incompetent, or both parents are dead.
The patient's wishes to receive aid-in-dying should be given strong weight, even though the patient is young. Speece and Brent, in their review of forty research studies related to children's understanding of death, concluded that healthy children acquire a mature (adult) understanding of death between the ages of five and seven. Speece & Brent, Children's Understanding of Death: A Review of Three Components of a Death Concept, in The Child and Family Facing Life-Threatening Illness 74-93 (T. Krulik, B. Holaday & I. Martinson eds. 1987). Children ages six to ten with a terminal illness also have been found to be aware of the seriousness of their disease. Spinetta, Rigler & Karon, Anxiety in the Dying Child, in The Child and Family Facing Life-Threatening Illness 120-25 (T. Krulik, B. Holaday & I. Martinson eds. 1987).
The Aid-in-Dying Board, when confronted with a request from a minor, should determine whether the minor has a mature understanding of the concept of death in terms of its irreversibility, nonfunctionality, and universality, before granting an aid-in-dying order. In common with all other patients, no aid-in- dying may be provided to an unwilling minor.
The above concerns also require Board involvement in cases when the minor is under age six (Section 5-102(a)(4)). Although it is more unlikely that minors under the age of six have a mature understanding of the concept of death, the Aid-in-Dying Board should evaluate these children for their understanding of death when a request to provide them with aid-in-dying is made. Again, if a minor under age six is unwilling to receive aid-in-dying, the Board can not order aid-in-dying. The Board is prevented by the protective rule of Section 8-101, and the requirement that aid-in-dying can be ordered only if the Board finds by clear and convincing evidence that aid-in-dying is consistent with the patient's intent. As noted in the Comments to sections 9-103 and 5-101, ascertaining intent with respect to very young children in all likelihood will be impossible. Thus, if parents disagree, aid-in-dying is not available under this [Act]. Furthermore, even if the minor could express an intent, the younger the minor the less likely that intent can be found to be voluntary and given in an informed manner as required by Section 8-102.
Section 5-102(b) lists those individuals who may request aid-in-dying on behalf of a terminally ill patient. A directive may provide specifically that a person listed in Section 5-102(b) can not make a request on behalf of the declarant. When the patient is a minor or is incompetent, someone must decide to refer the case to the Aid-in-Dying Board. The request of a minor age six or older for aid-in-dying can initiate the proceedings when parental consent is lacking. For other patients, those people listed in Section 5- 102(b)(2), who generally have the most knowledge of a patient's situation and intent, may initiate review before the Board. If a patient designated a certain person in a directive to initiate the process, that person also may do so under Section 5-102(b)(3). Although conceivably many other people exist who might have some knowledge of a patient's situation, the drafters believe it a wise safeguard to limit the class of potential requestors. This scheme is aimed at ensuring that the person who initiates the process has the patient's best interest at heart. It allows only those persons the patient designates, the patient's close family members, or the patient's legal guardian to request aid- in-dying on the patient's behalf.
The request for aid-in-dying may be written or oral. Once an appropriate person listed in Section 5-102(b) makes a request, Section 5-102(c) provides that the case be referred to an Aid-in-Dying Board for a determination either granting an order for aid-in-dying or denying the request.
Section 5-102(d) ensures that when the Aid-in-Dying Board enters an order granting a request, the order is treated the same as a patient's demand, and that aid-in-dying will be provided according to the particular requirements set out in Article 10. Additionally, every request for aid-in-dying is subject to the general restrictions and limitations of Article 8.
AID-IN-DYING FOR TECHNOLOGICALLY DEPENDENT PATIENT
'6-101 DEMAND FOR AID-IN-DYING FOR TECHNOLOGICALLY DEPENDENT PATIENT
(a) Aid-in-dying for a technologically dependent patient may be demanded under this section:
(1) By that patient if the patient is a competent adult; or
(2) On behalf of an incompetent technologically dependent patient by a surrogate named by that patient in a directive.
(b) Subject to the provisions of Article 8 (specifying general limitations and conditions), a demand for aid-in-dying for a technologically dependent patient complying with the provisions of subsection (a) of this section shall be administered in accordance with the provisions of Article 10 of this [Act].
Comment to Section 6-101
Section 6-101 recognizes the right of a patient who is technologically dependent to request, and in some cases demand aid-in-dying. As defined in Section 1-102(28), technological dependence means reliance on the continued administration of life sustaining treatment without any reasonably foreseeable expectation of living without that treatment.
The Comment to Section 5-101 applies to Section 6-101 with respect to patients who are technologically dependent. It should be noted, however, that under Section 6-101(a), the parents of a technologically dependent minor cannot demand aid-in-dying on that child's behalf. This is a safeguard against possible abuses of the category. Technologically dependent children have a potential for life that exceeds that of children who are terminally ill. This potential for life, coupled with the possibility of scientific or technological developments that would free technologically dependent patients, weigh against providing aid-in-dying to a technologically dependent minor patient. Thus, the parents of a technologically dependent minor who wish to have aid-in-dying provided for the child must make their request to an Aid-in-Dying Board, which will in turn review the merits of the case.
'6-102 REQUEST FOR AID-IN-DYING FOR TECHNOLOGICALLY DEPENDENT PATIENT
(a) Aid-in-dying may be requested for a technologically dependent patient who is:
(1) An incompetent patient without a directive;
(2) An incompetent patient with a directive under which there is no surrogate empowered to act at the time the request is made; or
(3) A minor.
(b) Unless the patient's directive otherwise provides, aid-in-dying for a technologically dependent patient may be requested under this section by:
(1) A minor designated in subsection (a)(3) of this section;
(2) The spouse, significant other, child, parent, sibling, grandparent, grandchild, or legal guardian of the patient on whose behalf aid-in-dying is sought; or
(3) Any other person designated in a directive of the patient.
(c) A request for aid-in-dying made by an individual designated in subsection (b) of this section shall be referred to the Aid-in-Dying Board established under Article 9.
(d) Subject to the provisions of Article 8 (specifying general limitations and conditions), an order of the Aid-in-Dying Board entered pursuant to the provisions of Article 9 of this [Act] granting a request for aid-in-dying shall be administered in accordance with the provisions of Article 10 of this [Act].
Comment to Section 6-102
The Comment to Section 5-102 applies to Section 6-102 with respect to patients who are technologically dependent.
Aid-in-dying for a technologically dependent minor is available only if a request for aid-in-dying is approved by an Aid-in-Dying Board. This section recognizes that minor have the right to request aid-in-dying whether or not their parents agree. Although the Aid-in-Dying Board will consider input from both the parents and the child, the child's intent will not necessarily be overruled by the parent's wishes if these conflict. This facet of Article 6 differs decidedly from Article 5 in that aid-in-dying may not be demanded by or on behalf of a minor who is technologically dependent.
AID-IN-DYING FOR PATIENT WITH AN INTOLERABLE DEPENDENCE
'7-101 REQUEST FOR AID-IN-DYING FOR PATIENT WITH AN INTOLERABLE DEPENDENCE
(a) Aid-in-dying for a patient with an intolerable dependence may be requested only by that patient provided the patient is a competent adult and has participated in a suitable program of rehabilitation prior to making the request for aid-in-dying.
(b) A request complying with the provisions of subsection (a) of this section shall be referred to the Aid-in-Dying Board established under Article 9.
(c) Subject to the provisions of Article 8 (specifying general limitations and conditions), an order of the Aid-in-Dying Board entered pursuant to the provisions of Article 9 of this [Act] granting a request for aid-in-dying shall be administered in accordance with the provisions of Article 10 of this [Act].
Comment to Article 7
The application of this [Act] to patients who are not terminally ill or technologically dependent undoubtedly is highly controversial. All sections of the [Act] relating to patients with an intolerable dependence therefore are bracketed and thus easily are severable from the remainder of the [Act]. It is hoped that the severable feature of the provisions related to intolerable dependence patients will allow the [Act] to be accepted by legislative bodies that otherwise would be reluctant to enact this [Act] into law.
The overall goals of Article 7 are: (1) to afford the opportunity to request aid-in-dying to competent adults who suffer from an intolerable dependence, but who do not otherwise qualify for aid-in-dying because they are not terminally ill or technologically dependent; (2) to ensure that Aid-in- Dying Boards have adequate current information about the patient; and (3) to ensure that an attempt has been made to rehabilitate the patient with an intolerable dependence who requests aid-in-dying.
Article 7 recognizes the right of competent adult patients to request aid-in- dying when an intolerable dependence causes pain and suffering resulting in a preference to die. This right is recognized because many patients who are not terminally ill or technologically dependent currently are forced to endure painful and harrowing deaths. These patients can benefit as much from this [Act] as can similarly situated terminally ill or technologically dependent patients. Those patients should not be denied the right to a humane and dignified death simply because they are not members of an easily defined and recognizable category of patients, such as terminally ill or technologically dependent patients.
It should be noted that patients with an intolerable dependence only may request, and may not demand, aid-in-dying. Furthermore, no other person may request or demand aid-in-dying for a patient with an intolerable dependence. This provision requires that, pursuant to Section 9-102(b), every intolerable dependence patient must have his case reviewed by an Aid-in-Dying Board before he may receive aid-in-dying. Aid-in-Dying Boards may order aid-in-dying only after thorough and careful review of each individual's case. Because only the patient with an intolerable dependence can request aid-in-dying, incompetent intolerable dependence patients cannot qualify for aid-in-dying under this section.
Patients with an intolerable dependence who wish to request aid-in-dying must undergo a rehabilitation program prior to making a request for aid-in-dying. This rehabilitation program should aim at improving the quality of the patient's life. Participation in a rehabilitation program may lead some patients to decide not to request aid-in-dying. The rehabilitation program thus provides preliminary screening of patients. It also lessens the case load of intolerable dependence patients referred to Aid-in-Dying boards. Of course, some patients may decide, with knowledgeable and compassionate help from health care providers associated with the rehabilitation program, that the program was unsuccessful at improving their life state. At this point, a patient properly may request aid-in-dying.
The goal of rehabilitation programs should be to improve the life state of the patient. Improvement of life state includes improvement of self care, home care, travel independence, communications, finances, psychological resources, and self-perception. Because lack of improvement can be related directly to the appropriateness of the program, the Aid-in-Dying Board should evaluate any rehabilitation program as it relates to the specific patient.
When presented with a request for aid-in-dying by a patient with an intolerable dependence, the Aid-in-Dying Board should consider the following factors in evaluating the appropriateness of the rehabilitation program: the completeness of the program; the psychological state of the patient at the time of the program; the length of time between the disability and rehabilitation; and the patient's cooperation with the process of rehabilitation. Each factor has a major impact on the patient's ability to benefit from rehabilitation and should be evaluated individually as well as in respect to the whole rehabilitation process.
A good rehabilitation program must be comprehensive. It must examine the rehabilitation process in the context of social, economic, and psychological variables. The workup must include an extensive evaluation of the disability or disabilities and a complete physical examination. In addition, the program must review socioeconomic status, ethnic and language affiliations, work history, living situation, and social support systems of the patient as well as those of the patient's spouse or significant other. This is important because the social setting of a disabled person has an effect on the outcome of rehabilitation. The rehabilitation program also should offer vocational rehabilitation. Failure to assess the patient comprehensively and to design a rehabilitation program based on a comprehensive assessment may deprive the patient of a full opportunity to profit from rehabilitation. An Aid-in-Dying Board may order modification of the rehabilitation program and evaluate the patient's response to the alternate program before considering the request for aid-in-dying.
Psychological states like depression, anxiety, and negative attitudes are known to decrease a patient's ability to benefit from rehabilitation. Patients should be allowed ample time to go through normal grieving over the loss of function. Rehabilitation should aim to decrease depression and anxiety while inculcating realistic and healthy attitudes about the patient's abilities and disabilities.
The intolerable dependence patient who requests aid-in-dying must undergo psychological evaluation prior to the Aid-in-Dying Board's decision. This evaluation serves to protect the interests of patients who may be unable, due to underlying psychopathology, realistically to assess and appreciate their condition, its prognosis, and resultant implications. See Comment to Article 9-103.
The time between disability and rehabilitation affects a patient's life state improvement. During this time the patient experiences disability in various life situations. The longer the interval between disability and rehabilitation, the greater the sense of disability will be, along with a concomitant increase in depression, anxiety, and negative attitudes. It may take up to two years of inpatient therapy, plus a period of adjustment to the "real world," before the appropriateness of a rehabilitation program can be measured. If there has been a prolonged lapse of time between disability and rehabilitation, the Aid-in-Dying Board may require an even longer period of time for adjustment before concluding that rehabilitation failed. Furthermore, if the rehabilitation occurred more than [ten] years prior to the request, the Board may suggest further rehabilitation.
The patient's level of cooperation with the process of rehabilitation also must be considered. The patient must attend and complete the rehabilitation to the best of his or her ability. The patient who is self- directed, accepts help, and refuses to accept the limitations dictated by the disability is one who has cooperated with the rehabilitation process. Reports from the rehabilitation program should address the patient's response to therapy and should be given careful consideration by Aid-in-Dying Boards.
Article 7 purposely omits children from eligibility to receive aid-in-dying for an intolerable dependence. Although children may possess the ability to understand death, see Comments to Articles 5 and 6, they are unable to assess completely and appreciate long term implications of conditions they might find temporarily intolerable due to lack of maturity and development. As growth, development, life experience, and rehabilitation occur, children are likely to adapt to their condition. Children may be more likely than adults to benefit from early rehabilitation. Additionally, because minor children face a considerably longer period with their condition than adults, they are more likely to benefit from subsequent scientific or technological developments.
Article 7 omits intolerably dependent, incompetent adults, either with or without written directives. This omission stems from the requirements of this Article, of Section 8-102, requiring a request to be voluntary and made in an informed manner, and of Section 9-103(b), allowing only the patient to request aid-in-dying for an intolerable dependence after participation in a rehabilitation program and psychological evaluation. These requirements serve to ensure that requests for aid-in-dying for an intolerable dependence patient will not be made in haste, considered lightly, or result form psychopathology. It is the express intent of the [Act] to prevent casual, maliciously motivated, and unfounded requests for aid-in-dying.]
GENERAL LIMITATIONS AND RESTRICTIONS
'8-101 REFUSAL TO RECEIVE AID-IN-DYING
No patient shall receive aid-in-dying if that patient objects to aid-in-dying at any time, unless the patient subsequently withdraws the objection.
Comment to Section 8-101
Section 8-101 applies to any person without regard to age, condition, or mental capacity. A patient may object verbally, in writing, or by conduct to the receipt of aid-in-dying. An objection is treated as an absolute veto over a prior request or demand for aid-in-dying by that patient or a third party acting on the patient's behalf. Similarly, such an objection overrides a valid directive.
Section 8-101 expresses a policy decision that when a patient's current objections are in conflict with prior expressions in favor of aid-in-dying, aid-in-dying shall not be provided. Section 8-101 is intended to promote the [Act's] underlying policies, which grant an individual wide autonomy in making personal health care decisions. In order to effectuate the autonomy of a given individual, Section 8-101 seeks to prevent the arbitrary exercise of power by persons acting on behalf of the patient.
An objection under Section 8-101 is not necessarily permanent; the individual may withdraw the objection at a later time. A subsequent withdrawal of an objection under Section 8-101 would be expected to be expressed in a manner at least as probative as the manner of the objection whenever possible. For example, if the objection is in writing, the withdrawal of that objection also should be in writing, provided the patient is capable of writing. If the patient is unable to withdraw an objection evidenced by a writing, the written objection is not conclusive evidence and will not preclude the patient from receiving aid-in-dying provided evidence exists that the patient has withdrawn the objection and now wishes to receive aid-in-dying.
The execution of a new directive subsequent to making an objection should be treated as a withdrawal of the objection if the directive expressed an intent to receive aid-in-dying.
An objection to aid-in-dying within the meaning of Section 8-101 is not the same as a conditional statement of an intent to receive aid-in-dying. For example, an expression of a refusal to receive aid-in-dying until an illness progresses to some specified point of incapacity is not the expression of an objection to receive aid-in-dying even though until the condition occurs the patient does not want to receive aid-in-dying. Rather, once the condition occurs, aid-in-dying should be granted consistent with the declarant's intent. See Section 10-102(b).
'8-102 VOLUNTARINESS AND INFORMED MANNER REQUIREMENT
(a) Any person demanding or requesting aid-in-dying must act voluntarily and in an informed manner.
(b) Whether a person demanding or requesting aid-in-dying acts voluntarily and in an informed manner shall be evidenced by one or more writings. Each writing must be:
(1) Signed by the person demanding or requesting aid-in-dying, or in that person's name by some other person acting in that person's presence and at that person's express direction;
(2) Signed by at least two witnesses each of whom witnessed either the signing of the writing or acknowledgement of the writing or the signature of the person signing the writing and who attest to the best of their knowledge and belief that the person signing the writing is acting voluntarily and in an informed manner.
(c) If the declarant is an inpatient in a health care facility, a patient advocate or ombudsperson designated by the [Department of Health] and not employed by the health care facility must be one of the witnesses to the writing.
Comment to Section 8-102
Section 8-102(a) expresses the policy that a demand or a request for aid-in- dying under this [Act] must be made voluntarily and in an informed manner as detailed in Section 1-102(15). One commentator explains this policy as follows:
The request for . . . [aid-in-dying] must be based on the free will of the person concerned and is not attributable to any pressure from others. Involuntary . . . [aid-in-dying] is odious. It is the duty . . . [of the person who seeks to determine if the patient or other person making the request is acting voluntarily and in an informed manner] to become convinced of this by conversations with the patient [or other person making the request], his or her family, and . . . [others]. During those talks . . . [the person who seeks to determine if the patient or other person making the request is acting voluntarily and in an informed manner] has to keep an eye open on the interrelationship and patterns of communication . . . . [The person who seeks to determine if the patient or other person making the request is acting voluntarily and in an informed manner] must be aware of who does the talking and takes the initiative. In separate talks with the patient attention must be given to other motivations like depression, the desire not to be a burden to nurses and family, or fear of desertion . . . . [The person who seeks to determine if the patient or other person making the request is acting voluntarily and in an informed manner] must take to get to know the patient and his or her surroundings very well.
Schoonheim, The Right To Die: The Euthanasia Discussion in the Netherlands, 4 J. Cancer Educ. 109, 111 (1989).
Section 8-102(a) is intended to ensure that a request or demand for aid-in- dying is made with full awareness of all the relevant factors of the patient's condition, the proposed method of aid-in-dying, and all of its ramifications. Without a full awareness of all relevant factors, the person making the demand or request could not possibly serve the autonomy of the patient. Because autonomy is one of the major justifications for this [Act], it should be carefully protected. This section presumes that without the information as provided for in Section 1-102(15), a fully considered choice is lacking.
Section 8-102(b) directs that the provisions regarding informed manner have been complied with only when the evidence of acting in an informed manner is in writing. This writing acts as a safeguard against fraud and helps assure the voluntary nature of the declarant's actions. The formalities of the writing parallel the formalities required for the execution of a directive.
'8-103 RESTORATION TO COMPETENCE
If two physicians determine there is a reasonable possibility that an incompetent patient may be restored to competence after aid-in-dying is demanded or requested, appropriate measures must be taken to restore the patient to competence to determine whether that patient wants aid-in-dying.
Comment to Section 8-103
Section 8-103 is designed to ensure that an incompetent person who may have the ability to initiate or veto the process of aid-in-dying if restored to competency is given that opportunity. This section is consistent with the underlying policy of this [Act] that individual autonomy is paramount in aid- in-dying decisions and that, whenever possible, such decisions should be made by the patient. In effectuating this provision, however, two physicians' determinations of the reasonableness of the attempt to restore the patient to competency shall be significant factor to be taken into account. In considering whether it is reasonable to restore the patient to competence the board should consider whether (1) the procedure to restore competence is in itself life-threatening; (2) the amount of pain the patient likely would suffer; (3) prior evidence of the patient's intent, such as the existence of a directive and the date the directive was executed; (4) the relationship of the demanders or requesters to the patient; and (5) the progress of the condition afflicting the patient.
'8-104 PROHIBITION ON PARTICIPATION BY GOVERNMENT OR HEALTH CARE PROVIDER OR INSURER
No local, state, or federal government, or agency or division or entity thereof, nor any health care provider, other than a health care provider named in a directive, or insurance company may directly or indirectly make a request to any Aid-in-Dying Board or court for an order authorizing or denying aid-in- dying to any person or be a party to any proceeding for the appointment of a person for the purpose of requesting aid-in-dying on the patient's behalf.
Comment to Section 8-104
This section reflects one of the fundamental policies underlying this [Act]. Aid-in-dying is not to be used to dispose of persons the state or others find burdensome. That would be odious. Rather, the underlying purpose of the [Act] is to give paramount respect to the wishes of a patient regarding when to die. To this end, Section 8-104 seeks to prevent the arbitrary exercise of power by government entities, health care providers, and insurance companies.
Section 8-104 is consistent with the general policy that request for aid-in- dying for a patient, if not made by the patient, are more apt to reflect the patient's probable intent when made by a person who has a personalized interest in the patient's welfare. Section 8-104 is designed to prevent the conflicts of interest that may arise when, for example, a patient's medical care is funded in any way by the government or paid for by a particular insurance company.
Under this section it is not improper for a governmental agency or health care provider to suggest to a patient's family that they request the provision of aid-in-dying or to advise a person demanding or requesting aid-in-dying. This is not an arbitrary exercise of power by a government entity or health care provider. Information supplied by a health care provider is necessary in the provision of aid-in-dying to informed consent. In order for a person to be prohibited from making a request to any Aid-in-Dying Board, the person must be acting in an official, state, or business capacity and not in a purely personal capacity. For example, an insurance agent who makes the request on behalf of a spouse acts in a purely personal capacity and not as an agent for the company by which the agent is employed. Similarly, this section does not prohibit the [Department of Health] or the [Department of Transportation] from complying with other provisions of this [Act].
'9-101 JURISDICTION AND DUTIES OF AID-IN-DYING BOARDS
(a) Aid-in-Dying Boards shall determine whether aid-in-dying may be provided to any patient whose case is referred to the Board.
(b) A request for aid-in-dying may be brought:
(1) By or on behalf of any patient residing or receiving health care in this [State]; and
(2) Before any Aid-in-Dying Board in the [State].
(c) Unless otherwise expressly provided, all findings of the Aid-in-Dying Board under this Article must be:
(1) Made by [a majority] of the Board; and
(2) Supported by clear and convincing evidence.
Comment to Section 9-101
Section 9-101(a) sets forth the basic duty of Aid-in-Dying Boards: to decide whether Aid-in-Dying ought to be provided to those patients whose cases are submitted for the Board's consideration. The case referred must be within the Board's jurisdiction. Jurisdiction is provided for in Section 9-106. It may consider only those cases brought to it through a request from persons with standing to bring the request under Articles 5, 6[, and 7].
Section 9-101(b) further clarifies on whose behalf a request to an Aid-in-Dying Board may be made. This section provides that request may be brought not only on behalf of residents of the [State], but also on behalf of nonresidents who are receiving medical treatment in the [State].
Section 9-101(c) states the degree of consensus and standard of proof that govern the Board's decisionmaking. Findings of the Board must be agreed to by a [majority], unless otherwise provided. A state that wishes to make review standards more stringent may opt to increase the proportion of concurring Board members needed to attain the Board's approval. The one exception to [majority] rule contained in this Article occurs in bracketed Section 9-103(b), which provides that the Board must approve the request of a person with an intolerable dependence to receive aid-in-dying by unanimous agreement. In making its factual findings, the Board must be satisfied that the evidence supporting the findings is clear and convincing.
'9-102 OPERATION AND PROCEDURES OF AID-IN-DYING BOARDS
(a) When a request is made for aid-in-dying, the Board shall meet within  business days following the request and shall render its decision within  days of the conclusion of its investigation but in no event more than  days following the request.
(b) Prior to rendering its decision the Board shall:
(1) Determine whether it has jurisdiction within the meaning of Sections 9-101(b) and 9-106;
(2) Determine whether to hold any hearings;
(3) Set a time, date, and place for any hearings to be held by the Board;
(4) Identify those persons who should be notified of any hearings and apprise them of the time, date, and place of the hearing; and
(5) Obtain information in addition to the patient's medical records that it deems relevant and probative to assist it in making a decision.
(c) The Board shall have subpoena power.
(d) The Board shall determine whether the relevant provisions of Articles 5, 6, [7,] and 8 have been satisfied. If the Board determines that the relevant provisions of Articles 5, 6 [7,] and 8 have not been satisfied in any case, it may dismiss the case without prejudice.
(e) Copies of all orders of the Aid-in-Dying Board with respect to aid-in- dying shall be filed with the [Department of Health].
Comment to Section 9-102
The purpose of Section 9-102(a) is to protect against undue delays in the process of deciding cases brought before Aid-in-Dying Boards. Because complexities in cases that are referred to the Board will vary, the time constraints are flexible enough to avoid making decisions in haste. In addition to providing time periods within which the Board must hold its first meeting and decide a case following completion of its investigation, the [Act] also provides a time limit of  days in which the proceedings must be completed.
In most cases aid-in-dying will be requested on behalf of an incompetent adult patient. Aid-in-Dying also may be requested for a patient who is a minor under the age of six or by a minor over age six whose custodial parents disagree with the minor's wish to receive aid-in-dying.
When the patient requests aid-in-dying, the Board's duty will be to determine the extent of the patient's understanding of the request. It is expected that in most cases an examination of the patient's record and a conversation with the patient will be all that is required for the Board to reach its determination. These proceedings ordinarily should be resolved quickly after the request is made. Similarly, a request made on behalf of an incompetent patient who has a valid directive but has named no surrogate to make the demand should not require protracted information gathering and deliberation.
Other cases, however, are likely to require more extensive and complicated factfinding and more difficult decisionmaking. The most difficult cases likely will be requests made on behalf of a terminally ill or technologically dependent patient who has made no directive and who has given few or contradictory indications of intent--and whose case, therefore, will require the Board to make a judgment pursuant to Section 9-103.
The purpose of the [Act] is to give effect to a patient's intent and not to order aid-in-dying when the Board is unable to determine a patient's intent; it would be unusual for a Board to order aid-in-dying for a minor under the age of six, and impossible for a Board to order aid-in-dying for any minor who is incapable of expressing his or her intention voluntarily and in an informed manner. For example, aid-in-dying could not be ordered for a newborn who is either terminally ill or technologically dependent, and might not be available at all until such time as the minor was capable of giving consent to aid-in- dying in an informed manner. See Section 9-104.
[If the patient who requests aid-in-dying claims to have an intolerable dependence, the proceedings could be protracted because of the need to determine not only that the patient has acted in an informed manner but also has undertaken the required rehabilitation and psychological evaluation.]
Section 9-102(b) facilitates the operation of Aid-in-Dying Boards by establishing preliminary steps the Board must follow to acquire the information it needs to render a decision. In determining whether the Board has jurisdiction as required by Section 9-102(b)(1), the Board may rely on the jurisdictional statement of the person making the request that is required under Section 9-106(b). The imposition of penalties for any misrepresentation to the Board helps to assure that this statement will be accurate. Moreover, the accuracy of a jurisdictional statement may be determine readily because orders of Aid-in-Dying Boards, according to Section 9-102(e), must be filed with the [Department of Health] and must be maintained in a registry established by Section 15-104(c).
Aid-in-Dying Boards shall us investigative and inquisitorial techniques to obtain evidence necessary to render a factually correct and legally proper decision. In cases in which factfinding is difficult or impractical for a Board to complete, the Board may employ a private investigator to assist in the fact-finding process. Section 9-102(c) gives Aid-in-Dying Boards subpoena power so that the Board can obtain all of the relevant evidence.
Aid-in-Dying Boards should consider any evidence they deem relevant and probative. The testimony of the patient always will be relevant. In light of the "veto rule" in Section 8-101, this includes the testimony of a patient who is incompetent. Other probative testimony may include the testimony of the patient's immediate family members and of others who have knowledge of the patient's intent or circumstances. Health care professionals familiar with the patient's case also may provide useful testimony, including information regarding whether a requester has acted voluntarily and in an informed manner.
Before reaching the merits of each case, Aid-in-Dying Boards shall determine whether the applicable provisions of Articles 5, 6, [7,] and 8 have been satisfied. If a Board determine that the provisions have not been satisfied it may dismiss the case without prejudice in order to allow the person making the request to satisfy these provisions and to make the request again. A Board may dismiss the case with prejudice if it feels that the process is being abused and it determines that barring the request for one year under Section 9- 106(a) is appropriate.
Section 9-102(e) requires copies of all orders of Aid-in-Dying Boards to be filed with the [Department of Health]. An order should consist of a statement of the decision, and an opinion explaining the reasons for the decision. The filing of these orders will help facilitate the determination of whether a request has been reviewed and denied previously by another Board in the [State] and, therefore, not properly before another Board pursuant to Section 9-106. Filing also will ensure consistency among Board decisions throughout the [State] and facilitate the [Department of Health's] audits of Boards.
'9-103 WHEN PATIENT'S INTENT CAN BE DETERMINED
(a) In cases in which the patient has a terminal condition, is technologically dependent, or both, the Aid-in-Dying Board shall determine whether the patient has an intent to receive aid-in-dying or not to receive aid-in-dying in circumstances substantially similar to those existing at the time of the Board's review.
(1) If the Board finds that the patient had an intent to receive aid-in- dying in substantially similar circumstances, whether evidenced by an unrevoked directive or otherwise, and finds that the applicable provisions of Articles 5, 6, and 8 have been satisfied, then the Board shall order in writing that aid-in-dying be provided pursuant to Article 10 of this [Act] including the manner in which aid-in-dying shall be provided to the patient.
(2) If the Board finds that the patient has an intent not to receive aid-in-dying in substantially similar circumstances, whether evidenced by an unrevoked directive or otherwise, then the Board shall order in writing that aid-in-dying not be provided.
[(b) Aid-in-Dying, when requested under Article 7, shall not be ordered unless the Board unanimously finds that the applicable provisions of Articles 7 and 8 have been satisfied and that the patient:
(1) Has participated in a suitable program of rehabilitation prior to making a request for aid-in-dying;
(2) Has undergone appropriate psychological evaluation after the request for aid-in-dying; and
(3) Has an intolerable dependence.]
Comment to Section 9-103
Aid-in-Dying Boards have the duty to determine the intent of the patient with respect to aid-in-dying so that autonomy of the patient is respected. The best evidence of intent is either the testimony of the patient or an expression of the patient's intent contained in a directive. This evidence, however, may no be available to an Aid-in-Dying Board. If the patient is competent and able to act voluntarily and in an informed manner, the patient can demand aid-in-dying without any need for an Aid-in-Dying Board.
Few people will have expressed an intention to receive aid-in-dying under circumstances identical to those existing at the time a Board hears their case. The phrase "substantially similar circumstances" was adopted to address this problem. An intent to receive aid-in-dying in a particular situation most likely will remain valid when the circumstances are only marginally different. In determining whether substantially similar circumstances exist, a Board should first refer to any circumstances that are set forth in the directive. A Board also may consider other evidence of situations in which a patient had an intent to receive aid-in-dying. Many patients may have contemplated circumstances in which they would want to receive aid-in-dying without formally describing them in a directive.
A directive that has lapsed may be considered as evidence of intent. For example, a directive might lapse because of a patient's forgetfulness or because of a patient's decision not to renew a directive. A Board should attempt to determine the circumstances of the lapse and to ascertain whether any inference may be drawn from them. If the patient intended the directive to lapse, this may be considered conclusive evidence that the intent of the patient was not to receive aid-in-dying. It the patient was unaware of the lapse, the invalid directive may be considered evidence that the patient continues to have an intent to receive aid-in-dying.
The revocation of a directive expressing an intent to receive aid-in-dying is strong evidence that the patient has an intent to not receive aid-in-dying. The revocation of a directive expressing an intent not to receive aid-in-dying does not provide strong evidence that the patient has an intent to receive aid- in-dying. This asymmetry reflects the underlying policy that aid-in-dying is to be administered only upon positive evidence of a patient's desire to receive it. The revocation in either case should be established by clear and convincing evidence.
Because Aid-in-Dying Boards are to give effect to the patient's intent, a Board that determines a patient has an intent to receive aid-in-dying shall order that the patient receive aid-in-dying. Conversely, when a Board determines a patient has an intent not to receive aid-in-dying, the Board shall order that aid-in-dying not be administered.
An Aid-in-Dying Board should consider a request for aid-in-dying made on behalf of a pregnant woman in light of the same and similar circumstances requirement. The Board must determine whether the woman's decision to receive aid-in-dying took into account the fact of pregnancy. After obtaining the information bearing on this issue, a Board that finds the woman intended to receive aid-in-dying notwithstanding her pregnancy shall order aid- in-dying. A Board that finds the woman did not intend to receive aid-in-dying while pregnant shall not order aid-in-dying. If the woman's intent on the question is inconclusive or cannot be determined, the Board shall not order aid-in-dying because it cannot find by clear and convincing evidence that the woman would want aid-in-dying while pregnant. If the woman completed the pregnancy portion of a directive or named a surrogate, this matter need not come before an Aid-in-Dying Board.
[Section 9-103(b) concerns a person referred to an Aid-in-Dying Board pursuant to Article 7 of the [Act]. Although this person clearly has an intent to receive aid-in-dying, assuming the request is voluntary and made in an informed manner, cases of intolerable dependence are not governed by Section 9- 103(a) because Article 7 and related provisions of this [Act] are not intended to allow everyone with an asserted intolerable dependence to demand aid-in- dying. People with an intolerable dependence must demonstrate affirmatively to a Board, after undergoing rehabilitation and psychological evaluation, that their condition truly is intolerable. The overall goal of Section 9-103(b) is to minimize the likelihood that individuals who could benefit from rehabilitation will receive aid-in-dying.
Given the unprecedented and undoubtedly controversial nature of Article 7 and related provisions, Aid-in-Dying Boards must find unanimously that a patient with an intolerable dependence satisfies the requirements of this [Act] before ordering aid-in-dying.
Whether the patient has participated in a suitable program of rehabilitation is determined by reviewing the standards for an adequate rehabilitation program as described in the Comment to Article 7.
The purpose of psychological evaluation in Section 9-103(b)(2) is to protect the interests of patients who may be unable to achieve maximum benefit from a program of rehabilitation or realistically to assess and appreciate their prognosis or potential due to underlying difficulties of adjustment. Specific evaluation methods purposely have been omitted from the [Act]. Each jurisdiction must determine the breadth and depth of psychological evaluation it will require.
In all cases, evaluation should include assessment of the patient's and family's circumstances and ability to provide needed support for the patient. Evaluation also may include reality testing, and testing of cognitive and intellectual functioning, anxiety level, or interpersonal behavior. Measures of specific mood states or pathologies believed to influence decisionmaking, such as depression, also could be used in the evaluation.
A licensed psychiatrist or clinical psychologist should conduct psychological evaluations in accordance with [State] regulations. The licensed evaluator should present the findings personally to the appropriate Aid-in-Dying Board.
The results of the evaluation should be shared with the patient. These findings and the evaluation process itself may dissuade some patients in their requests for aid-in-dying. The process of evaluation, therefore, is to provide an additional tier or check-point in the level of certainty required for a patient to request aid-in-dying.
An Aid-in-Dying Board shall consider fully all evidence to determine whether the patient's condition is intolerable. Evidence should include rehabilitation records, results of the psychological evaluation, and any other evidence the Board deems relevant. The Board must make this determination in accordance with Articles 7 and 8 of this [Act]. In questionable or suspect cases, the clear and convincing evidence standard requires Boards to err on the side of not allowing aid-in-dying.]
'9-104 WHEN PATIENT'S INTENT CANNOT BE DETERMINED
When aid-in-dying is requested under either Articles 5 or 6 and the patient's intent cannot be determined as required by Section 9-103, the Aid-in-Dying Board shall order in writing that the patient not receive aid-in-dying.
Comment to Section 9-104
Section 9-104 expressly provides that Aid-in-Dying Boards shall not order aid-in-dying for any patient whose intent cannot be determined. This provision is consistent with the principle of individual autonomy upon which this [Act] is based. If the intent of the patient is inconclusive after thorough review of the patient's case, an order by a Board providing that aid-in-dying be administered to the patient would not necessarily be consistent with, and thus would not clearly effectuate, the patient's intent. This [Act] is meant to provide aid-in-dying only to patients who clearly wish to receive it.
'9-105 CLOSED MEETINGS
Hearings and other meetings of Aid in-Dying Boards shall not be subject to any open meeting laws or similar laws of this [State].
Comment to Section 9-105
The purpose of this section is to exempt the proceedings of Aid-in-Dying Boards from open meeting laws that otherwise may operate in the [State] and thereby to provide a private forum for aid-in-dying decisions. The benefit of closed proceeding is to provide greater privacy and dignity to the families and patients whose cases are before Aid-in-Dying Boards. The risk of secrecy, of course, is abuse. This risk is minimized by the audits and oversight of the [Department of Health] and by the ever present possibility of judicial review.
'9-106 CLAIM PRECLUSION AND JURISDICTION STATEMENT
(a) If an Aid-in-Dying Board has denied a request for aid-in-dying with respect to a patient, the same or a different Board is not required to consider another request for aid-in-dying made by or on behalf of that patient unless more than one year has passed since the denial of the request, or there has been a substantial change in evidence or circumstances.
(b) Notwithstanding the foregoing provisions of this section, an Aid-in- Dying Board has discretion to reconsider a previous decision of its own with respect to any patient for any reason the Board determines.
(c) A request for aid-in-dying shall be accompanied by a statement to the Aid-in-Dying Board stating that the jurisdictional requirements of Section 9- 101(b) and of subsection (a) of this section are satisfied.
Comment to Section 9-106
Under Section 9-106(a) a request for aid-in-dying may be made to any Aid-in- Dying Board operating in the [State]. This permits forum shopping. If, however, the reviewing Board denies a request for aid-in-dying, no Board in the [State] need consider another request for aid-in-dying for the same patient unless one year passes or new evidence or circumstances arise.
The restriction on reconsideration applies only to denials. An order authorizing aid-in-dying is unlikely, as a practical matter, to be brought back to a Board. A denial of a request more often will recur. For example, an unsuccessful requester who seeks aid-in-dying for an asserted intolerable dependence may want to return to a Board numerous times seeking aid-in-dying. Thus, Section 9-106(a) reflects a balance between the practical need for a Board to make a decision that it will not be obligated to reconsider repeatedly and the patient's potential interest in having his or her case reconsidered. This section gives a patient a right to reconsideration after a year passes or if new evidence or circumstances arise. For example, following a denial of a request for aid-in-dying on the ground that no evidence of the patient's intent to receive aid-in-dying has been presented, new evidence may be uncovered establishing the intent.
Section 9-106(b) provides that any Board has discretion to reconsider any patient's case that the same Board has previously decided. This allows a Board to re-open a patient's case when it determines that a decision it has made is wrong or inequitable for some reason. This section does not allow different Boards within the [State] to reconsider the decisions of other Boards.
The jurisdictional statement requirement in Section 9-106(c) is included to simplify the determination of whether a particular Aid-in-Dying Board has jurisdiction to hear a certain patient's case. If the patient's request for aid-in-dying is accompanied by a jurisdictional statement, the Board reviewing the case may presume it has jurisdiction to conduct a valid review. Thus, the jurisdictional statement satisfies the requirement in Section 9- 102(b)(1) that a Board must determine that it has jurisdiction within the meaning of Section 9-106 before it begins review of a case. See Comment to Section 9-102.
PROVISION OF AID-IN-DYING
'10-101 WHO MAY PROVIDE AID-IN-DYING
Aid-in-dying may be performed by:
(a) A licensed physician licensed registered nurse, [licensed] physician's assistant, or telostrician;
(b) The patient, if the patient desires to perform aid-in-dying, provided the patient is supervised by a person identified in subsection (a); or
(c) Any other adult designated by the patient, provided the adult is supervised by a person identified in subsection (a).
Comment to Section 10-101
The purpose of Section 10-101 is to list those persons who may perform aid- in-dying. This list in no way creates a priority as to who may or must perform aid-in-dying.
Section 10-101(a) lists a licensed physician as a person who may perform aid- in-dying. Under this section, a licensed physician means any person who has obtained a medical degree from an allopathic or osteopathic medical school and is licensed within this [State].
Section 10-101(b) also recognizes that a patient may wish to terminate her own life. It recognizes the right of the patient to do so in accordance with the provisions of this section and enables that patient to realize a humane and dignified death. In order for a patient to qualify to perform aid-in-dying, the patient must be capable of carrying out the procedure and in all instances must be supervised by a person listed in subsection (a) to assure that the procedure is carried out in a manner calculated to bring about the intended result. If the patient cannot perform the required procedure, but does not want one of the persons listed in subsection (a) to provide aid-in-dying, the patient may designate an adult to provide aid-in-dying provided the adult is supervised by a person listed in subsection (a).
The patient's health care provider falls within subsection (a) and is primarily responsible for providing aid-in-dying. This person shall provide aid-in-dying unless the person is a conscientious objector within the meaning of Article 11. In the event that the health care provider is a conscientious objector, the provider must refer the patient to another health care provider willing to provide aid-in-dying or to a licensed telostrician.
The creation of a new profession, the telostrician, was a deliberate attempt to simplify the process of aid-in-dying. With the creation of this new profession, a patient qualifying for aid-in-dying under this [Act] can avoid being shuffled from physician to physician in order to find one who is not a conscientious objector and will provide aid-in-dying. A telostrician by definition is an individual who does not have a conscientious objection to aid- in-dying. It is recognized, however, that a telostrician may have a conflict of interest in providing aid-in-dying to a particular patient. The patient may be a close friend or relative of the telostrician, in which case it is recognized that the telostrician should not have to be the one to provide aid- in-dying. In such a case, it that telostrician's duty to inform the patient of the conflict and to refer the patient to another telostrician.
'10-102 WHEN AID-IN-DYING MAY BE PROVIDED
(a) A patient may receive aid-in-dying only when:
(1) Aid-in-dying has been ordered by the Aid-in-Dying Board, or in the absence of an order, the person who provides or supervises aid-in-dying under Section 10-101(a) determines that the applicable provisions of Articles 5, 6, and 8 have been satisfied; and
(2) The patient has made no objection to aid-in-dying as provided in Section 8-101.
(b) Aid-in-dying must be provided at or as close as possible to the time, event, or condition specified by the patient, the surrogate, or the Aid-in- Dying Board, but aid-in-dying must not be delayed more than [48 hours] from that time, event, or condition.
Comment to Section 10-102
Section 10-102 recognizes that when a patient has qualified for aid-in-dying as set forth in Articles 5 through 9, and the patient has not made an objection as provided in Section 8-101, there is no need for delay. Once the requirements of Article 8 have been met, aid-in-dying should be performed immediately upon the patient's request, but in no event should the procedure be performed more than [48 hours] after the date and time of the patient's request or the request of the surrogate.
The person named in Section 10-101(a) is responsible for determining whether or not the provisions of Article 8 requiring a person to act voluntarily and in an informed manner have been met. If the provider of aid-in-dying finds that any requirements of this [Act] which are a precondition to receiving aid-in- dying have not been met, the provider must inform the relevant persons and must not provide aid-in-dying until all requirements have been met.
The patient or the surrogate shall have wide latitude in choosing the time when aid-in-dying shall be provided. For example, the request for providing aid-in-dying may be for a certain day and time, or may be contingent upon some event or condition.
'10-103 HOW AID-IN-DYING MAY BE PROVIDED
The withdrawal or withholding of life-sustaining treatment or the administration of qualified drugs to provide aid-in-dying must be done in a manner consistent with the demand or order of the Aid-in-Dying Board and in accordance with regulations of the [Department of Health], or absent such regulations, the policies or procedures of the health care provider treating the patient.
Comment to Section 10-103
The administration of aid-in-dying must be done in accordance with the regulations promulgated by the [Department of Health]. In the absence of regulations, health care providers may act in accordance with their own policies and procedures provided they do not conflict with the letter and spirit of this [Act] to provide a humane and dignified death.
CONSCIENTIOUS OBJECTION AND CONFLICT OF INTEREST
'11-101 INDIVIDUALS WHO HAVE A CONSCIENTIOUS OBJECTION OR CONFLICT OF INTEREST WITH RESPECT TO A PARTICULAR PATIENT
Except as provided in Section 12-101 (requiring the transfer of referral of a patient), an individual who has a conscientious objection to aid-in-dying or a conflict of interest with respect to a particular patient may refuse to participate in any aspect of the aid-in-dying process for that patient.
Comment to Section 11-101
Section 11-101 is designed to ensure that a person or facility qualifying as a conscientious objector is not forced to act contrary to personal convictions to comply with this [Act].
A conscientious objection may arise for any person who objects in principle to aid-in-dying. A conscientious objector may refuse to participate in any aspect of the aid-in-dying process except for the duty to transfer the patient to another health care provider as stated in Article 12.
If a health care provider is a conscientious objector and is the first to be confronted with the request for aid-in-dying, the objector should inform the patient of the objection and give the patient an opportunity to contact another health care provider for assistance. Ideally, patient and provider will have discussed their respective positions on aid-in-dying at the earliest possible stage in order to avoid surprises later on, when discussion is already difficult.
A conflict of interest may arise with respect to a particular patient. This section permits a person selectively to refuse to administer aid-in-dying to that patient. A conflict of interest exists when a person who normally would administer aid-in-dying is related to the patient, or may inherit from the patient by intestate succession or under the patient's will, or has had a prior relationship with the patient which, in the person's judgment, would result in a conflict of interest.
'11-102 HEALTH CARE FACILITY
(a) A health care facility, other than a health care facility described in subsection (c), may qualify as a conscientious objector by annually filing a written statement signed by the appropriate officer of the facility substantially in the following form:
FORM 11-102 CONSCIENTIOUS OBJECTION STATEMENT (Check appropriate lines.)
__________________________________ (insert name of health care facility) objects to participating in aid-in-dying for:
1. ________ Terminally ill patients.
2. ________ Technologically dependent patients.
3. ________ Patients with an intolerable dependence.
4. ________ All of the above.
__________________________________ (insert name of health care facility) objects to providing aid-in-dying by:
1. ________ The withdrawal or withholding of life-sustaining treatment.
2. ________ The administration of a qualified drug for the purpose of inducing death.
3. ________ Both of the above.
(b) A health care facility may alter or amend the written statement filed with the [Department of Health] pursuant to subsection (a) of this section at any time by filing an amended written statement with the [Department of Health].
(c) No health care facility may qualify as a conscientious objector if the [Department of Health] determines that the provider is either government owned or substantially government funded.
Comment to Section 11-102
A health care facility that holds itself out as a conscientious objector must have adopted this position prior to the patient's admission so that the patient can make an informed decision regarding treatment at that institution. Furthermore, a facility cannot be a conscientious objector for a particular individual. It can be a conscientious objector for a class of individuals or for a type of aid-in-dying. For example, the facility may be a conscientious objector for persons with an intolerable dependence, but not for terminally ill persons. Likewise, a facility may be a conscientious objector with respect to the administration of life-terminating drugs, but be willing to withdraw or withhold life-sustaining treatment.
A health care facility's objection to aid-in-dying must be evidenced by a written statement filed annually with the [Department of Health] substantially in the form provided in Section 11-102(a). This form may be amended at any time. The intent of the facility with respect to aid-in-dying must be printed in a conspicuous manner on the admission forms as required by Section 16-106. The facility shall inform a patient of its conscientious objector status prior to admission or as soon thereafter as practicable. Thus, a patient admitted on an emergency basis who is unconscious should be advised of the facility's policy only after the patient has regained consciousness and the patient's condition has satisfactorily stabilized.
DUTY TO TRANSFER
'12-101 TRANSFER OR REFERRAL OF PATIENT
Following a demand or request for, or an order of an Aid-in-Dying Board that a patient should receive, aid-in-dying, a health care provider that is a conscientious objector or has a conflict of interest as provided in Article 11 shall refer the patient as soon as possible to another health care provider or telostrician to enable the patient to receive aid-in-dying.
Comment to Section 12-101
The goal of Section 12-101 is to prevent conscientious objections from impending demands or requests for aid-in-dying by or on behalf of patients eligible to receive aid-in-dying under the [Act].
If a conscientious objection or conflict of interest prevents a health care provider or facility from providing aid-in-dying, the objector shall refer the person requesting aid-in-dying either to another health care provider or facility willing to provide aid-in-dying or to a telostrician.
Failure to transfer or refer the patient to a facility or health care provider willing to provide aid-in-dying, or to a telostrician licensed by the [Department of Health] will result in liability as specified in Section 14-103 of this [Act].
'12-102 TRANSFER OF RECORDS
If a patient whose eligibility to receive aid-in-dying has been established is transferred to another health care provider, a copy of the patient's relevant medical records must be transferred with the patient.
Comment to Section 12-102
Section 12-102 further facilitates referral and transfer of patients seeking aid-in-dying when a health care provider or facility is a conscientious objector. This section is designed to ensure that patients seeking aid-in- dying are not impeded by a provider's willful or negligent delay or failure to transfer relevant medical records. Pursuant to rules promulgated by the [Department of Health], each [State] will determine what components of patients' medical records should be transferred. A state may require records to be transferred in the form of a patient summary including the patient's diagnosis and the evidence on which it is based; the patient's prognosis; the patient's disease history, treatments undergone, length of treatment for the condition, and response to treatment including complications suffered; and the patient's knowledge of the condition. In addition to a patient summary, a copy of any directive or revocation should be sent.
Section 12-102 differs from Section 12-101 in that patients may be transferred or referred to other health care providers by conscientious objectors under Section 12-101 before their eligibility to receive aid-in-dying finally is established. Medical records, however, will be transferred under Section 12-102 after the patient's eligibility to receive aid-in-dying is established. Transferring records that are sufficient to establish eligibility provides for more likely compliance with Section 12-103.
'12-103 RELIANCE ON TRANSFERRED RECORDS
If a patient is transferred to another health care facility to receive aid- in-dying, the facility shall rely on the statements in the medical records to establish that the patient is entitled to receive aid-in-dying.
Comment to Section 12-103
Section 12-103 allows the health care provider who receives a referred or transferred patient to rely on statements and medical records already in existence to establish the patient's eligibility to receive aid-in-dying. This ensures that a patient will not be subjected to repetitive, painful, or unnecessary tests or procedures providers might require as a tactic to delay aid-in-dying or as a precaution against possible liability.
Except as provided in Article 14 (with respect to penalties),
(a) Except for damages arising from negligence, a person shall not be subject to civil or criminal liability for participating in any aspect of aid-in-dying in good faith compliance with this [Act].
(b) A person is not subject to censure, discipline, suspension, loss of license, loss of privileges, loss of membership in any professional organization or association, or other penalty for participating or refusing to participate in any aspect of aid-in-dying in good faith compliance with this [Act].
(c) No demand or request for, or provision of, aid-in-dying in good faith compliance with the provisions of this [Act] shall constitute neglect for any purpose of law or provide the sole basis for the appointment of a guardian, committee, or conservator.
Comment to 13-101
The purpose of Article 13 is to grant broad immunity to persons who participate in good faith in any aspect of the aid-in-dying process. A grant of broad immunity will effectuate the intent of persons entitled to receive aid-in-dying under this [Act] by encouraging others to participate in the aid- in-dying process free from fear of legal sanction.
Section 13-101(a) grants immunity from civil and criminal liability to persons who participate in good faith in any aspect of the aid-in-dying process. Under no circumstances, however, should Section 13-101(a) be construed to immunize persons from the damages that result from their own deliberate, reckless, or negligent conduct. Thus, although persons authorized by Section 10-101 to provide aid-in-dying are normally immune from civil and criminal liability, they are not immune from the damages that result from their negligent failure to provide aid-in-dying in a manner prescribed by the [Department of Health].
The qualified immunity provided by this section also applies to the following types of persons: (1) surrogates acting pursuant to a valid directive; (2) third persons requesting aid-in-dying on behalf of a terminally ill or technologically dependent patient; (3) counselors acting pursuant to regulations adopted by the [Department of Health]; (4) members of the Aid-in- Dying Board acting pursuant to Article 9; and (5) conscientious objectors who abide by the requirements of Article 12. This is not an exhaustive list of the types of persons who may be granted qualified immunity under Section 13-101(a). There may be others who also should receive qualified immunity for their good faith participation in the aid-in-dying process.
Although Section 13-101(a) immunizes surrogates from civil and criminal liability unless they act in a negligent or more culpable manner, a surrogate's decision still may be challenged under this [Act]. For example, a surrogate's decision may be challenged under Section 8-102 if the surrogate fails to act in an informed manner.
In order to benefit from the qualified grant of immunity in Section 13- 101(a), a conscientious objector must abide by the requirements of Article 12. This means that the conscientious objector must do two things once a patient has met all of the requirements of this [Act]. First, the conscientious objector must prepare a copy of the patient's relevant medical records. Second, the conscientious objector must refer the patient along with a copy of her relevant medical records to a person who is willing and able to provide aid-in-dying (i.e., a person listed in Section 10-101). If the conscientious objector abides by these requirements, immunity from civil and criminal liability is granted under Section 13-101(a), unless the conscientious objector acts in a negligent or more culpable manner.
The purpose of Section 13-101(b) is to protect fully persons who participate in good faith in any aspect of the aid-in-dying process. Consequently, Section 13-101(b) protects persons who participate in the aid-in-dying process pursuant to this [Act] from censure, discipline, suspension, loss of license, loss of privileges, and loss of membership in any professional organization or association. In addition, Section 13-101(b) protects these persons from all other penalties that could be imposed solely on the basis of their participation in the aid-in-dying process. Examples of invalid penalties are penalties respecting wages paid or promotions. This means that a person who has participated in the aid-in-dying process in a health care facility that is not a conscientious objector cannot be penalized by a health care facility that is a conscientious objector. Likewise, a person affiliated with a health care facility that is not a conscientious objector cannot be penalized if he or she is a conscientious objector.
According to Section 13-101(c), no good faith action that complies with the requirements of this [Act] can constitute neglect, or provide the sole basis for the appointment of a guardian, committee, or conservator. Thus, a parent who makes a good faith demand for aid-in-dying on behalf of a terminally ill child cannot be charged with child abuse or neglect.
'14-101 WHEN INHERITANCE RIGHTS FORFEITED
Any person who intentionally fails to disclose knowledge in any form of the patient's intention not to receive aid-in-dying to a surrogate or to an Aid-in-Dying Board shall be deemed to have predeceased the patient for purposes of intestate succession, for purposes of construing the patient's will, and for all other purposes if the patient receives aid-in-dying.
Comment to Section 14-101
If a person with knowledge of a directive stating the declarant's intention not to receive aid-in-dying intentionally conceals the contents of that directive, Section 14-101 prevents that person from inheriting from the declarant's estate if the declarant receives aid-in-dying. For example, if T devises $10,000 to A, and A intentionally conceals the contents of T's directive expressing an intent not to receive aid-in-dying, then upon T's death A forfeits the bequest under T's will. The $10,000 would be distributed in whatever manner state law provides on the assumption that A predeceased T. A similar result occurs if a person with knowledge that a patient does not want to receive aid-in-dying intentionally fails to disclose that fact to a surrogate named in a directive or to an Aid-in-Dying Board. Similarly, if T died intestate, A could not claim to be an heir of T. This section reinforces the policy evidenced by Section 8-101 that no person shall receive aid-in-dying over his or her objection.
A similar rule applies if a person intentionally fails to disclose a revocation of a directive and, as a result of such failure, a patient receives aid-in-dying.
Section 14-101 is based on the common law notion that no one should be permitted "to profit by his own fraud, or to take advantage of his own wrong, or to found any claim upon his own iniquity, or to acquire property by his own crime." Riggs v. Palmer, 115 N.Y. 506, 511, 22 N.E. 188, 190 (1889) (legatee who murdered testator to prevent revocation of testator's will deprived of interest in testator's estate).
The "for all other purposes" phrase is intended to apply a similar rule to nonprobate transfers. For example, suppose T created a bank account registered in the name of T "in trust for A" and under state law this account would pass to A upon T's death. If A violated the provisions of this section A would be deemed to have predeceased T and the bank account would be distributed in whatever manner state law provided in the event A died before T.
This penalty does not preclude other civil or criminal action such as homicide prosecution or wrongful death action. These are contemplated by Section 14-107.
'14-102 LIABILITY OF HEALTH CARE PROVIDER
(a) A health care provider who in bad faith fails to comply with a directive or acts in any manner inconsistent with a demand or request for aid-in-dying or an order of an Aid-in-Dying Board shall be liable for damages [and is guilty of a [serious misdemeanor]].
(b) A health care facility that fails to abide by its conscientious objection statement filed pursuant to Section 11-102(a) shall be liable for damages.
Comment to Section 14-102
Section 14-102 provides for civil [and criminal] penalties if a health care provider deliberately fails to comply with an Article 2 directive, fails to abide by its conscientious objection statement, or acts in a manner that is inconsistent with Articles 5, 6, [7,] 8, or 9 of this [Act]. For example, if a health care provider deliberately fails to comply with an Article 2 directive to receive aid-in-dying, the health care provider is liable for damages. The health care provider must reimburse the declarant's estate for any expenses incurred by the declarant or the declarant's estate from the time the directive would have become operational until the time the declarant actually died. Additionally, the health care provider must pay damages for any pain and suffering that the declarant endured because of the health care provider's failure to comply with the directive. Finally, the health care provider may be required to pay appropriate punitive damages.
[Unfortunately, simply making a health care provider liable for damages may not be enough to ensure compliance with the provisions of this [Act]. The drafters decided, therefore, that a health care provider also is guilty of a [serious misdemeanor] if the health care provider deliberately fails to comply with an Article 2 directive or acts in a manner that is inconsistent with Articles 5, 6, [7,] 8, or 9 of this [Act]. The purpose of this penalty-- similar to the criminal penalties provided in subsequent sections of Article 14--is to stigmatize a health care provider that acts in a manner inconsistent with the provisions of this [Act]. Consequently, the criminal penalty provided by Section 14-102 is relatively slight. A state may impose more severe penalties.]
'14-103 LIABILITY FOR FAILURE TO TRANSFER
Any health care provider who willfully fails to transfer a patient pursuant to the provisions of Article 12 shall be liable for damages [and is guilty of a [serious misdemeanor]].
Comment to Section 14-103
The purpose of Section 14-103 is to prevent a health care provider from using its status as a conscientious objector to circumvent the right of a patient to receive aid-in-dying. Section 14-103 effectuates this purpose by providing civil [and criminal] penalties when a health care provider willfully fails to transfer a patient pursuant to Article 12.
Articles 11 and 12 contain balancing provisions. They balance the right of a patient to receive aid-in-dying against the right of a health care provider to be a conscientious objector. Under Article 11, a conscientious objector may refuse to participate in the aid-in-dying process if the provider complies with the requirements of Article 12. Under Article 12, a health care provider that qualifies as a conscientious objector under Article 11 may refuse to participate in the aid-in-dying process provided the objector transfers a patient who has met all of the requirements of this [Act] to a person who is able and willing to provide aid-in-dying (i.e., a person listed in Section 10- 101).
Sections 13-101(a) and 14-103 attempt to ensure compliance with Article 12. Section 13-101(a) attempts to ensure compliance by granting qualified immunity to a health care provider that transfers a patient pursuant to Article 12. Section 14-103 attempts to ensure compliance by providing for civil [and criminal] penalties if a health care provider willfully fails to transfer an eligible patient to a person who is able and willing to provide aid-in-dying. Together, these two sections give a health care provider a tremendous incentive to comply voluntarily with Article 12.
Few facilities are likely to be liable for failure to transfer a patient because a patient who seeks a transfer to another facility can be discharged at his direction or at the direction of a member of the patient's family.
'14-104 DESTRUCTION OR CONCEALMENT OF A DIRECTIVE OR REVOCATION
(a) A person who willfully conceals, alters, defaces, or materially damages a directive or the revocation of a directive without the declarant's consent shall be liable in damages [and is guilty of a [serious misdemeanor]].
(b) In addition to any damages for which a person is liable under Section 14-104(a), the person is also guilty of a [felony] if the patient dies as a result of any action specified in that section.
Comment to Section 14-104
Section 14-104 addresses the situation in which a person willfully conceals, alters, defaces, or materially damages a directive or the revocation of a directive without the declarant's consent. The purpose of Section 14-104 is to prevent a person from deliberately defeating the true intent of a declarant. Section 14-104 effectuates this purpose by providing for civil and criminal penalties when a person willfully conceals, alters, defaces, or materially damages a directive or the revocation of a directive without the declarant's consent.
Section 14-104 provides for both civil and criminal penalties because willfully concealing, altering, defacing, or materially damaging a directive or the revocation of a directive may result in the death of a declarant who had no intention of receiving aid-in-dying. See also Comment to Section 14-105. Section 14-104 also is intended to discourage unauthorized treatment that prolongs the life of a declarant who wants to receive aid-in-dying. Thus, Section 14-104 provides civil and criminal penalties for a person's intentional action(s) or intentional inaction(s) that might circumvent the true intent of a declarant. The possibility that the declarant's intentions concerning aid-in- dying will be thwarted is enough to subject a person to liability.
'14-105 FALSIFICATION OF DIRECTIVE OR REVOCATION
(a) A person who knowingly falsifies a directive or revocation of a directive or unduly influences any person to demand or request aid-in-dying shall be liable in damages [and is guilty of a [serious misdemeanor]].
(b) In addition to any damages for which a person is liable under subsection (a) of this section, the person is also guilty of a [felony] if the patient dies as a result of any action specified in that section.
Comment to Section 14-105
Section 14-105(a) addresses situations when a person knowingly falsifies a directive or the revocation of a directive, or unduly influences another person's decision to demand or request aid-in-dying. Section 14-105(b) provides a stricter penalty if conduct proscribed in Section 14-105(a) causes the declarant's death. For example, if O forges D's name to a directive, O is guilty of a [serious misdemeanor] and is liable for any resulting damages. If a physician, in good faith, relies upon a forged directive in providing aid-in- dying, then O is liable to D's estate for damages for wrongful death as well as being criminally liable.
'14-106 PHYSICIAN LIABILITY
(a) A primary physician who willfully fails to record in a patient's record the determination of a terminal condition with the intent to frustrate the ability of a patient to receive aid-in-dying shall be liable in damages [and is guilty of a [serious misdemeanor]].
(b) A primary physician who willfully fails to take reasonable measures to restore a patient to competence as required by Section 8-103 shall be liable in damages [and is guilty of a [serious misdemeanor]].
Comment to Section 14-106
Section 14-106 articulates situations when willful inaction subjects a primary physician to civil and criminal penalties. For example, Section 14- 106(a) subjects a primary physician to civil [and criminal] penalties for willful failure to record the determination of a terminal condition in a patient's medical record. The purpose of Section 14-106(a) is to prevent a primary physician from intentionally manipulating a patient's diagnosis in order to frustrate the patient's ability to receive aid-in-dying. Section 14- 106(a) effectuates this purpose by providing for penalties that are severe enough to deter a primary physician who might be tempted to frustrate a patient's ability to receive aid-in-dying by failing to record the determination of a terminal condition in the patient's medical record.
Section 14-106(b) also subjects a primary physician to civil [and criminal] penalties for willful inaction. Specifically, Section 14-106(b) subjects a primary physician to civil [and criminal] penalties if the physician fails to take reasonable measures to restore a patient to competence as required by Section 8-103. The drafters chose to subject a primary physician to these penalties for willful failure to comply with Section 8-103 because the drafters believe that it is very important to try determine whether a patient wants aid- in-dying before it is provided. To that end, Section 14-106(b) encourages a primary physician to take measures reasonably expected to restore a patient to competence by providing civil [and criminal] penalties when the physician willfully fails to take these reasonable measures.
'14-107 FURTHER LIABILITIES
(a) Nothing in this Article precludes further liability for civil damages resulting from other negligent conduct or intentional misconduct by a health care provider.
(b) The penalties in this article do not preclude criminal penalties applicable under other law for conduct which is inconsistent with the provisions of this [Act].
Comment to Section 14-107
The purpose of Article 14 is to supplement existing civil and criminal law. The drafters added Section 14-107 to emphasize that even when a health care provider technically complies with the provisions of this [Act], the health care provider may still be held liable if the health care provider acts in a negligent manner or engages in intentional misconduct. For example, when a person listed in Section 10-101(a) attempts to provide aid-in-dying for a patient who has met all of the requirements of this [Act], a malpractice suit arises against that person if the patient does not die because the person provided aid-in-dying in a negligent manner. Similarly, if a health care provider intentionally falsifies a directive or the revocation of a directive, the health care provider may be prosecuted for fraud or forgery under existing criminal law.
RESPONSIBILITIES OF THE [DEPARTMENT OF HEALTH]
'15-101 POWERS AND DUTIES
In addition to other powers and duties provided for in other provisions of this [Act], the [Department of Health] shall have the power to issue regulations governing aid-in-dying.
Comment to Section 15-101
Section 15-101 provides the [Department of Health] with broad authority to issue regulations governing aid-in-dying. This authority is granted to the [Department of Health] because of the complexity of the [Act] and the difficulty in enumerating all of the powers and duties necessary to make this legislation effective. The [Department of Health] has been delegated this power because it already has the expertise and resources necessary to issue regulations.
The [Department of Health] may make rules and regulations consistent with this [Act] as may be necessary for the governing of its own proceedings, the performance of its duties, the regulation of the practice of aid-in-dying, and the enforcement of this [Act].
'15-102 REGULATIONS FOR AID-IN-DYING
The [Department of Health] shall establish regulations to govern the administration of qualified drugs and the withholding or withdrawal of life- sustaining treatment, including regulations authorizing health care providers and telostricians to acquire and administer a qualified drug for the purpose of providing aid-in-dying to a patient.
Comment to Section 15-102
Section 15-102 gives the [Department of Health] authority to establish regulations regarding the method of aid-in-dying to be used. Current medical practice may alleviate the need for any specific regulations concerning the withdrawal or withholding of life-sustaining treatment.
In the case of administration of a qualified drug, the [Department of Health] shall establish regulations that identify the specific drug(s) and the appropriate doses that may be used to provide aid-in-dying. In addition to specifying what constitutes a "qualified drug," these regulations should conform to other provisions that may exist currently under the [State] Narcotic Drug Act or Controlled Substances Act. The regulations should include a requirement limiting who may purchase or order the drug, a requirement that orders be in writing, a procedure for return of unused drugs, and a requirement of record keeping.
Because health care providers and telostricians who are authorized to administer aid-in-dying may not be authorized to prescribe and administer drugs under present law, this Section empowers and directs the [Department of Health] to issue appropriate regulations that permit such persons to acquire qualified drugs and to administer them for the purpose of providing aid-in-dying.
(a) All licensed physicians, licensed registered nurses, and [licensed] physician's assistants shall be deemed to be licensed to provide aid-in-dying.
(b) The [Department of Health] shall issue regulations concerning the training, qualifications, and licensing of telostricians.
Comment to Section 15-103
Section 15-103 requires the [Department of Health] to control the licensing of persons who provide aid-in-dying in this [State]. Licensed physicians, licensed registered nurses, and [licensed] physician's assistants already possess the requisite medical expertise or can acquire it readily, and thus, are deemed to be licensed to provide aid-in-dying. Telostricians, on the other hand, are a new type of health care professional created by this [Act]; the [Department of Health] must issue regulations to control their licensing.
The licensing scheme developed by the [Department of Health] should include, but is not limited to, the following characteristics: the completion of a written application for a license on forms furnished by the [Department of Health]; remittance of a fee set by the [Department of Health] to cover administrative costs; achievement of a passing score on an examination prepared and administered by the [Department of Health]; satisfactory proof that the applicant is not less than the appropriate minimum age as determined by the [Department of Health]; and rules concerning reciprocity among states.
Licensing regulations issued by the [Department of Health] also should address the training and qualifications required of telostricians. The [Department of Health] shall approve only those training programs that satisfy its minimum guidelines. Appropriate subjects for the training include basic medical skills necessary to administer drugs or withdraw life-sustaining treatment, communication skills, and skills that would permit the telostrician to meet the statutory requirements with which the telostrician must comply before providing aid-in-dying.
(a) The [Department of Health] shall establish and maintain a registry of all telostrician licensed to practice in this [State].
(b) The [Department of Health] shall establish and maintain a registry of health care facilities that are conscientious objectors and have filed a written statement pursuant to Section 11-101(a).
(c) The [Department of Health] shall establish and maintain a registry of all aid-in-dying orders.
Comment to Section 15-104
Section 15-104(a) requires the [Department of Health] to develop and maintain a registry to provide information on telostricians within the [State]. This information will be available to individuals who wish to invoke their right to aid-in-dying as authorized under this [Act], to health care providers required to refer their patients who wish aid-in-dying, and to any other interested party. [State] and local agencies concerned with monitoring aid-in-dying also will have access to this information.
Under Section 15-104(b), the [Department of Health] shall establish and maintain a registry of those health care facilities that are conscientious objectors. This information will be available to health care consumers, to [State] and local agencies concerned with monitoring aid-in-dying, and to any other interested party. The [Department of Health] will use the data to evaluate compliance with Section 11-102 of this [Act] relating to the filing of conscientious objector status. The [Department of Health] must ensure that these facilities are qualified to claim exemption as conscientious objectors and that they are adequately informing patients in the facility of their conscientious objector status as required by Section 11-102.
Section 15-104(c) requires the [Department of Health] to establish and maintain a registry of all orders granting or denying aid-in-dying issued by the Aid-in-Dying Boards. This information will be available to Aid-in-Dying Boards to verify the requesting party's compliance with Section 9-106(a) concerning the time period within which another request for aid-in-dying may be initiated. [State] and local agencies monitoring aid-in-dying, and any other interested party also will have access to the information.
(a) The [Department of Health] shall require those persons performing aid- in-dying pursuant to Section 10-101(a) to document in the patient's medical records that aid-in-dying was provided in accordance with the provisions of this [Act].
(b) The [Department of Health] shall review annually the medical records maintained pursuant to subsection (a).
(c) The [Department of Health] shall maintain one or more registries for the filing of copies of directives and written revocations of directives and shall issue appropriate regulations to provide copies of the directive or revocation to the persons named in Section 2-107(b).
Comment to Section 15-105
Section 15-105(a) refers to the individual record-keeping requirements for those persons providing aid-in-dying. This expands current Natural Death Acts, which usually require only that the fact of a terminal condition and a known directive be recorded in the medical record. This section would require documentation of the following: counseling, determination of a terminal condition, informed consent or informed manner, date of request or demand for aid-in-dying, review board determination (if any), individual providing aid-in- dying, method used, and date and time of aid-in-dying. The purpose of such record-keeping requirements is to assure compliance with all provisions of this [Act].
Section 15-105(b) requires the [Department of Health] to perform an annual review of these records to verify compliance with the record-keeping requirements of subsection(a), and to ensure aid-in-dying is being provided in accordance with this [Act].
Under Section 15-105(c), the [Department of Health] must set up a central file of all directives and revocations submitted to it by individuals. The purpose of this file is to furnish health care providers, individuals eligible to request aid-in-dying for a patient under Section 5-102 or 6-102, and Aid-in- Dying Boards with the information necessary to initiate the aid-in-dying process when the patient is incompetent.
The [Department of Health] may coordinate record-keeping guidelines with other states to develop uniform guidelines which would facilitate information sharing when necessary.
The [Department of Health] also may set reasonable filing fees to help cover the administrative cost of the registry.
'15-106 REPORTING REQUIREMENTS
(a) The [Department of Health] may issue appropriate regulations to facilitate the collection of information regarding compliance with this [Act].
(b) The [Department of Health] shall generate an [annual] report of aid-in- dying statistics for the [State].
Comment to Section 15-106
This section allows the [Department of Health] to issue regulations for the collection of information on patients receiving aid-in-dying. Section 15-106(a) delegates to the [Department of Health] the responsibility for determining specific data elements to be reported. At a minimum, it should require the age of the patient, the diagnosis, and the date of aid-in-dying. Additional information the [Department of Health] may require includes the name of the person providing aid-in-dying, the method used, and the setting in which aid- in-dying occurred. The [Department of Health] may wish to create a registry of this information, which would be available to interested parties subject to the confidentiality policy in the next paragraph. The [Department of Health] should collect data in a manner compatible with other states collecting the same information, to the extent feasible.
The identity of specific patients who have received aid-in-dying should be kept confidential and not released to the public. This information is medical in nature and entitled to the same protection as other medical information.
Section 15-106(b) requires that the [State] report on the data acquired throughout the year. The purpose of this annual report is to provide the [State] and health care providers with information that will be useful in planning, budgeting, and future auditing.
'15-107 CREATION OF AID-IN-DYING BOARDS
(a) The [Department of Health] shall establish one or more Aid-in-Dying Boards to consist of [five] members who shall be appointed to staggered terms, the length of which shall be determined by the [Department of Health].
(b) The [Department of Health] shall appoint board members and alternates, organize and supervise their training, set their compensation and provide for the reimbursement of their expenses, issue regulations governing conflicts of interest and the removal of board members and alternates, and monitor their performance to assure compliance with this [Act] and the regulations of the [Department of Health].
(c) Board members must be residents of this [State] who are at least eighteen years of age.
(d) No two members of the same board may have the same professional license or occupation.
Comment to Section 15-107
This section vests significant discretion in the [Department of Health] to allow for the creation of particular programs that best meet the [State's] needs. The specific form of each enacting state's program may differ greatly depending on a number of factors, including population and population density, availability of citizens to serve as board members, and the financial resources available to the [State].
Because some board members will be chosen from the general public, the [Department of Health] must implement a training program. This training program should inform the prospective board members about Board procedures as well as their powers and duties as board members. The training program also should develop inquisitorial and investigative skills and explain presumptions and standards of proof. Because the consequences of the decisions made by Aid-in-Dying Boards can be irreversible, the training should emphasize that board members must perform their duties in a solemn and conscientious manner.
Any interested person may bring information about conflicts of interest or malfeasance of board members to the attention of the [Department of Health]. The [Department of Health] should not hesitate to disqualify a board member due to a conflict of interest or to remove a board member for malfeasance. The [Department] should not allow a board member to consider a patient's case if the board member's integrity concerning that patient is in doubt.
The purpose of the requirement in Section 15-107(d) that no two members of any one board have the same professional license or occupation is to promote diversity within the group, and to prevent occupational or professional biases from coloring the decisions of any one board. The different professional license requirement was included to allow those with similar occupations but with different licensing requirements, such as a doctor and a nurse, to sit on the same board.
'15-108 TRAINING OF COUNSELORS
The [Department of Health] shall issue regulations regarding the training of counselors and the nature and amount of counseling required to give informed consent or act in an informed manner.
Comment to Section 15-108
The [Department of Health] is required to regulate the training of counselors to ensure they are prepared for the various situations of patients who may be eligible for aid-in-dying. Eligible patients may fall into any of the three different categories; each category consists of many different individual cases. Thus, the nature of the counseling will vary in each case. Counselors must trained to respond to complex cases and to determine how much counseling is required for each case. The [Department of Health] should develop appropriate policies that will guide the counselor in various situations.
Regulations also are needed to ensure that counselors are able to recognize when a person demanding or requesting aid-in-dying is acting with informed consent or in an informed manner. For counseling to be an effective protection against abuse, counselors must be given adequate training as determined by the [Department of Health].
'15-109 EVALUATION RESEARCH
The [Department of Health] shall undertake in its own capacity or by contract a program of research studies that will enable the Legislature to review the functioning and effects of this [Act], so as to be able to retain or revise its provisions on the basis of useful empirical knowledge.
Comment to Section 15-109
Virtually all legislations is an attempt to solve perceived problems in society, often prompted, as this [Act] has been, by unprecedented changes in the society. The problems addressed by this [Act] are faced only by highly developed technological societies because the problems addressed are a by- product of modern medical technology. But the drafters are not omniscient. The contours of the problem are perceived imperfectly and the notions of what would effect workable solutions cannot claim to be more than informed best guesses made by the drafters and the legislatures that adopt the [Act].
Medical technology itself provides a parallel illustration. All innovations in medical and surgical treatment are expected and hoped to be improvements over prior ways of dealing with patients' medical problems. Yet, when these techniques are tried and tested empirically, only about one third of these innovations are found to be effective. Another third, approximately, are found to be no improvement, and another third are found to be counter-productive. J. Bunker, B. Barnes, & F. Mosteller, Cost, Risks, and Benefits of Surgery 107-70 (1977). Legal innovations, similarly, may prove to be helpful, harmful, or indifferent.
The Uniform Commercial Code provided an early example of the law's recognition that legislation is a human tool to solve human problems. It was spawned by a series of studies that determined that the existing law of sales was not serving contemporary American business, and its drafters proposed solutions that underwent a long period of testing and revision into more and more effective legislation.
A legislature's need for feedback concerning the extent to which a new law is achieving its intended goals, or is producing unintended, undesirable side effects, may be all the more important when the issues addressed are new and controversial, such as those addressed by this [Act]. The drafter expect and hope that the [Model Act] will relieve the difficult plight of patients wanting to escape unwanted medical technology that keeps them alive in a time and under circumstance they do not choose. Quite apart from philosophical differences, there are debates about the practical workings and effects of the [Act] among those who agree that assisted death is necessary in some form.
Some people question whether the [Act] will achieve its goals; whether it will be circumvented; whether persons not intended to be included within the [Act's] ambit will be swept down a slippery slope; whether its procedures function workably; whether it will affect the medical profession adversely; and whether the [Act] will exacerbate rather than relieve the fears of the public, especially the terminally ill, technologically dependent, or intolerably dependent--the people the [Act] most seeks to help.
This provision authorizes the [Department of Health] to:
(a) Identify issues that are important and amenable to study. The literature on this topic is replete with such issues, as will be the debates that accompany the passage of this [Act];
(b) Carry out evaluation research on selected issues, either in- house or by contract. "Evaluation research" or "program evaluation" are synonymous terms of art widely recognized among those who conduct and use empirical studies on the effects of innovations, ranging from surgical techniques to legislation; and,
(c) Report its findings to the appropriate legislative committee.
This provision enhances the ability of the legislature to monitor the functioning and effects of the [Act]. Information gathered from monitoring will enable the legislature to assess whether adverse predictions materialize, and to take corrective action if necessary, including repeal of certain provisions. Additionally, this provision gives the legislature a chance to fine tune minor provisions of the [Act] to enable it to achieve its purposes. If the [Act] achieves the intended results, these studies will confirm that fact. In any event, the legislature will be better informed.
'16-101 PRIOR DIRECTIVES
A directive executed prior to the effective date of this [Act] that has not been revoked in any manner provided under prior law or under this [Act] shall be given the same force and effect as if it had been executed after the effective date of this [Act], provided it was signed by the declarant and by two or more witnesses.
Comment to Section 16-101
Section 16-101 provides that a directive that has been executed prior to the effective date of this [Act] has the same force and effect as if it had been executed after the effective date of this [Act] if the directive was signed by the declarant, and two or more witnesses acknowledge that the directive is that of the declarant. Under this section, the directive need not comply with the formal execution requirements of Section 2-102, nor with the formal execution requirements of the enacting state provided the requisite signatures are present. In no event shall the directive be given effect without re-execution in accordance with Section 2-102 if any of the requisite signatures were obtained after the effective date of this [Act].
'16-102 EFFECT OF AID-IN-DYING ON CONSTRUCTION OF WILLS, CONTRACTS, AND STATUTES
(a) No provision in a contract, other agreement, or will, whether written or oral, shall be valid to the extent the provision would affect whether a person can execute or revoke a directive or designate a surrogate or other person to initiate aid-in-dying before an Aid-in-Dying Board.
(b) No obligation owing under any currently existing contract shall be conditioned or affected by the execution or revocation of a directive or any provision thereof.
(c) Aid-in-dying when provided in accordance with this [Act] shall not constitute homicide or suicide for the purpose of construing or interpreting any contract or will or any statute, regulation or law, notwithstanding any language to the contrary.
Comment to Section 16-102
Section 16-102 recognizes that, as a matter of public policy, an individual should be free to make future health care decisions through the execution or revocation of a directive without undue influence from others. To implement this policy decision, subsection (a) invalidates any provision in a contract, agreement, or will to the extent that it is conditioned on the execution or revocation of a directive or the designation of a surrogate or person to initiate aid-in-dying before the Board. Subsection (a) is intended to prevent coercion by employers, insurance companies, or other interested parties. For example, an employer may not deny or condition employment on the basis of an otherwise qualified applicant's directive.
Subsection (b) provides that no obligation under currently existing contracts is altered by the execution or revocation of a directive.
Subsection (c) provides that aid-in-dying shall not constitute homicide or suicide for the purpose of construing or interpreting any contract or will, or any statute, regulation, or law.
'16-103 INSURANCE OR ANNUITY POLICIES
The sale, procurement, or issuance of any life, health, or accident insurance or annuity policy, or the rate charged for any policy, shall not be conditioned upon or affected by the execution or revocation of a directive or any provision thereof.
Comment to Section 16-103
Section 16-103 recognizes that insurance and annuity contracts influence individuals in our society. The purpose of this section is to ensure that an individual may choose freely to execute or revoke a directive without undue pressure from outside economic factors. To promote this purpose, Section 16- 103 prohibits the sale, procurement, or issuance of any insurance or annuity policy, or the rate charged for any policy to be conditioned upon or affected by the execution or revocation of a directive. To ensure that an individual is free of such economic pressure, no insurance or annuity company or any agent thereof may make inquiries into the existence of a directive or revocation of a directive, nor are such persons authorized to make a request to the [Department of Health] for a copy of a directive or revocation of a directive.
No person shall require, induce, or prohibit an individual to execute or revoke a directive as a condition for a contract or the performance of any service or benefit or for any other purpose.
Comment to Section 16-104
The purpose of Section 16-104 is to prevent coercion by prohibiting any person from requiring, inducing, or prohibiting the execution or revocation of a directive as a condition for a contract or the performance of any service or benefit or for any other purpose. Section 16-104 is to be construed broadly to effectuate the autonomy of an individual in choosing a future course of medical treatment. For example, a hospital, nursing facility, or other health care provider may not require the execution or revocation of a directive as a condition for medical services.
'16-105 DUTIES OF [DEPARTMENT OF TRANSPORTATION]
Within [one] year following the effective date of this [Act], the [Department of Transportation] shall issue driver's licenses that provide a means for the declarant to indicate that a directive has been registered with the [Department of Health].
Comment to Section 16-105
Section 16-105 is intended to provide notice on a declarant's driver's license that a directive has been filed with the [Department of Health]. This notice would be similar to the notice currently provided by organ donor stickers on driver's licenses. Because the notice will not detail the contents of the directive, it is essential for a health care provider to contact the [Department of Health] to obtain any copy of the directive or revocation on file with that [Department].
The [Department of Transportation] cannot laminate such stickers to the license unless the holder of the license presents a receipt from the [Department of Health] evidencing that a directive has been filed with the [Department of Health].
'16-106 NOTIFICATION OF AID-IN-DYING POLICY
A health care facility shall print its policies respecting the provision of aid-in-dying in a conspicuous manner on its admission forms and shall inform a patient of this policy prior to admission or as soon thereafter as practicable.
Comment to Section 16-106
The purpose of Section 16-106 is to provide patients with information regarding a health care facility's policies on aid-in-dying at the earliest possible time. Knowledge of the health care facility's policies prior to medical treatment, or shortly thereafter in an emergency situation, will allow a patient autonomy in choosing a health care facility that will effectuate the patient's intent regarding future health care decisions. The pretreatment provision of information on policies also should lessen the number of transfers pursuant to Article 12, and therefore, save patients and health care providers the burden and expense of transfer.
'16-107 WAIVER OF FEES
The [Department of Health] shall waive any or all fees required under this [Act], or in connection with any service provided under this [Act], in the event that a person is unable to pay.
Comment to Section 16-107
This provision reinforces the policy of individual autonomy that underlies this [Act] by ensuring that no individual shall denied the rights granted under this [Act] because of financial hardship. To ensure that financial considerations are not a barrier to rights under this [Act], the [Department of Health] is empowered to waive any or all fees required under the [Act] or in connection with any service provided under this [Act].
The invalidation of any article or section of this [Act] as to any person or circumstance shall not affect the application of any other article or section of this [Act] that can be given full effect without the invalid article, section, or application.
Comment to Section 16-108
The purpose of this section is to sever the various provisions of the [Act]. In the event that an article, section or application of the [Act] is found to be invalid as to any person or circumstance, the application of any other article or section shall not be affected.
'16-109 UNIFORMITY IN APPLICATION TO PATIENTS
Aid-in-dying shall not be provided or refused on the basis of the patient's age, gender, race, national origin, affectional preference, religion, or creed or solely because a patient has become a burden, the patient's usefulness to society has diminished, the patient is mentally incompetent or physically disabled, or the patient is indigent.
Comment to Section 16-109
Aid-in-dying shall not be provided or refused to any individual because of age, gender, race, national origin, affectional preference, religion, or creed. Similarly, aid-in-dying shall not be provided or refused because an individual has become a burden, the individual's usefulness to society has diminished, the individual is mentally or physically incompetent, or is indigent unless the patient expressly states that such factors are to be considered. The purpose of this provision is to follow the overriding concern of the [Act] in allowing any individual to exercise autonomy in making health care decisions. The above list is not intended to be exhaustive. It is included only to illustrate that the decision to receive or administer aid-in- dying is not to be based on such factors in the absence of express direction by the patient. In no event is this [Act] intended to reflect any decision concerning the value of human life nor does it attempt to indicate who should exercise the rights established under this [Act]. The sole purpose of this [Act] is to allow a patient, surrogate, or Board to make a decision in the best interests of the patient based on a multitude of considerations. No single factor assumes precedence. This section is not intended to preclude a patient from expressly specifying that any of the above-mentioned factors be taken into consideration.
'16-110 EFFECTIVE DATE OF [ACT]
This [Act] shall become effective immediately upon the date of its enactment.
FNa Brackets indicate language that must be replaced with the appropriate names of the legislation, the enacting state, and appropriate state agencies. Elsewhere, brackets indicate provisions that may be controversial, see infra Comment to Article 7, and that are easily severable from the [Act] or may be altered for policy reasons.