Model Act
MODEL AID-IN-DYING ACT
(Drafted by Students at the Iowa Law School
75 Iowa Law Review 125 (1989)
Reporters:
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
Consultants:
Phillip J. Leonard
Jackie Shane
Copyright 1990 by the University of Iowa (Iowa Law Review)
FOREWORD
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
Preamble
ARTICLE 1 GENERAL PROVISIONS
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1-101 Short Title'
1-102 DefinitionsComment
ARTICLE 2 REQUIREMENTS FOR A VALID DIRECTIVE
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2-101 Who May Sign a DirectiveComment
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2-102 Formal Executive RequirementsComment
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2-103 Effectiveness of Designation of a SurrogateComment
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2-104 Duration of a Valid DirectiveComment
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2-105 Effect of Directive Executed Outside of the [State]Comment
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2-106 Delivery of Directive to Primary Physician or Health Care FacilityComment
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2-107 Delivery to and Copy of Directive in [State] RegistryComment
ARTICLE 3 REVOCATION OF DIRECTIVE
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3-101 Manner of RevocationComment
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3-102 Communication of RevocationComment
ARTICLE 4 DEATH WITH DIGNITY
Model Directive 156
Comment
ARTICLE 5 AID-IN-DYING FOR A TERMINALLY ILL PATIENT
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5-101 Demand for Aid-in-Dying for Terminally Ill PatientComment
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5-102 Request for Aid-in-Dying for Terminally Ill PatientComment
ARTICLE 6 AID-IN-DYING FOR TECHNOLOGICALLY DEPENDENT PATIENT
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6-101 Demand for Aid-in-Dying for Technologically Dependent PatientComment
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6-102 Request for Aid-in-Dying For Technologically Dependent PatientComment
[ARTICLE 7 AID-IN-DYING FOR PATIENT WITH AN INTOLERABLE DEPENDENCE
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7-101 Request for Aid-in-Dying for Patient with an Intolerable DependenceComment
ARTICLE 8 GENERAL LIMITATIONS AND RESTRICTIONS
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8-101 Refusal to Receive Aid-in-DyingComment
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8-102 Voluntariness and Informed Manner RequirementComment
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8-103 Restoration to CompetenceComment
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8-104 Prohibition on Participation by Government or Health Care Provider or InsurerComment
ARTICLE 9 AID-IN-DYING BOARDS
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9-101 Jurisdiction and Duties of Aid-in-Dying BoardsComment
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9-102 Operation and Procedures of Aid-in-Dying BoardsComment
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9-103 When Patient's Intent Can Be DeterminedComment
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9-104 When Patient's Intent Cannot Be DeterminedComment
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9-105 Closed MeetingsComment
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9-106 Claim Preclusion and Jurisdictional StatementComment
ARTICLE 10 PROVISION OF AID-IN-DYING
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10-101 Who May Provide Aid-in-DyingComment
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10-102 When Aid-in-Dying May Be ProvidedComment
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10-103 How Aid-in-Dying May Be ProvidedComment
ARTICLE 11 CONSCIENTIOUS OBJECTION AND CONFLICT OF INTEREST
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11-101 Individuals Who Have A Conscientious Objection or Conflict of Interest with Respect to a Particular PatientComment
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11-102 Health Care FacilityComment
ARTICLE 12 DUTY TO TRANSFER
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12-101 Transfer or Referral of PatientComment
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12-102 Transfer of RecordsComment
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12-103 Reliance on Transferred RecordsComment
ARTICLE 13 IMMUNITIES
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13-101 ImmunitiesComment
ARTICLE 14 PENALTIES
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14-101 When Inheritance Rights ForfeitedComment
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14-102 Liability of Health Care providerComment
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14-103 Liability for Failure to TransferComment
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14-104 Destruction or Concealment of a Directive or RevocationComment
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14-105 Falsification of Directive or Revocation 201Comment
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14-106 Physician LiabilityComment
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14-107 Further LiabilitiesComment
ARTICLE 15 RESPONSIBILITIES OF THE [DEPARTMENT OF HEALTH]
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15-101 Powers and DutiesComment
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15-102 Regulations for Aid-in-DyingComment
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15-103 LicensureComment
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15-104 RegistriesComment
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15-105 Record-KeepingComment
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15-106 Reporting RequirementsComment
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15-107 Creation of Aid-in-Dying BoardsComment
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15-108 Training of CounselorsComment
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15-109 Evaluation ResearchComment
ARTICLE 16 MISCELLANEOUS PROVISIONS
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16-101 Prior DirectivesComment
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16-102 Effect of Aid-in-Dying on Construction of Wills, Contracts, and StatutesComment
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16-103 Insurance or Annuity PoliciesComment
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16-104 CoercionComment
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16-105 Duties of [Department of Transportation]Comment
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16-106 Notification of Aid-in-Dying PolicyComment
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16-107 Waiver of FeesComment
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16-108 SeverabilityComment
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6-109 Uniformity in Application to PatientsComment
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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
RECEIVE AID-IN-DYING%
PREAMBLE
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.
ARTICLE 1
GENERAL PROVISIONS
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1-101 SHORT TITLEThis [Act] may be cited as the Aid-in-Dying Act.
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1-102 DEFINITIONSThe 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 [18] 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 [18] 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.
ARTICLE 2
REQUIREMENTS FOR A VALID DIRECTIVE
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2-101 WHO MAY SIGN A DIRECTIVEA 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.
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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.
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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.
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2-104 DURATION OF A VALID DIRECTIVEA directive is valid for [10] 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 [10] 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.
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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.
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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.
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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].
ARTICLE 3
REVOCATION OF DIRECTIVE
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3-101 MANNER OF REVOCATIONA 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.
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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.
ARTICLE 4
DEATH WITH DIGNITY MODEL DIRECTIVE
MODEL DIRECTIVE
Read Carefully
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
NOT BOTH
(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)
Signed: ____________________________________________________________________
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.
_______________________________________________________________________ witness
_______________________________________________________________________ address
_______________________________________________________________________ address
_______________________________________________________________________ witness
_______________________________________________________________________ address
_______________________________________________________________________ address
SURROGATE STATEMENT
I (we) have read this directive, understand its terms, and accept the responsibilities of surrogate(s).
Dated: ______ (month) ______ (day) ______ (year)
Signed by ___________________________________________________________________
Address _____________________________________________________________________
_______________________________________________________________________________
_______________________________________________________________________________
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.
ARTICLE 5
AID-IN-DYING FOR A TERMINALLY ILL PATIENT
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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.
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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.
ARTICLE 6
AID-IN-DYING FOR TECHNOLOGICALLY DEPENDENT PATIENT
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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.
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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-i