Legalized Assisted Dying in America

Home , Accidental death, Justifiable homicide, Philip Nitschke, Suicide in Switzerland

LEGALIZED ASSISTED DYING IN AMERICA:

IMPROVING THE OREGON MODEL WITH LESSONS FROM OTHER COUNTRIES

JOHN WILLIAM FRYE, III

Submitted in partial fulfillment of the requirements for the degree of

Doctor of Philosophy

Department of Bioethics

CASE WESTERN RESERVE UNIVERSITY

January, 2018

CASE WESTERN RESERVE UNIVERSITY SCHOOL OF GRADUATE STUDIES

We hereby approve the thesis/dissertation of John William Frye, III

candidate for the degree of Doctor of Philosophy*.

Committee Chair Stuart Youngner, MD

Research Advisor Mark Aulisio, PhD

Committee Member John Huss, PhD

Committee Member Barbara Daly, PhD

Committee Member Robert Arnold, MD

Date of Defense August 8th, 2017

*We also certify that written approval has been obtained for any proprietary material contained therein.

Table of Contents

Preface……………………………………………………………………………………..i

Acknowledgements……………………………………………………………………….iv

Abstract……………………………………………………………………………………v

Chapter 1: Background, Literature Review, and Terminology…………………………....1

Chapter 2: The Philosophy and Practical Reality of the Oregon Model…………………20

Chapter 3: Problems with the Oregon Model……………………………………………45

Chapter 4: Overview of the Practices and Solutions from Elsewhere…………………...74

Chapter 5: Plugging the Holes in the Oregon Model…………………………………….98

Chapter 6: The Future of the Oregon Model—California and Beyond………………...126

References………………………………………………………………………………131

Preface

With the 2016 November elections, Colorado became the 6th state to legalize assisted dying, and the 5th to follow the model Oregon pioneered in 1994. The District of

Columbia’s council and mayor approved a similar law that came into effect on February

28, 2017. Over 20% of Americans now live in states that have some form of assisted dying available. While the debate over its morality continues both professionally and publicly, the practical issues of the current implementation need to be addressed.

This dissertation is not an attempt to argue the morality of assisted dying or whether it should be legalized. Rather than asking “Can suicide be ethically permissible?”, “Is active termination of life morally equivalent (or even preferable) to letting die?”, or “Does a doctor’s duty to treat suffering extend to assisting a patient’s death?”, the questions concerning this dissertation are “How should patients who ask for a legal form of assisted death be treated?”, “What protections (legal and otherwise) should be in place to minimize potential harms and abuses?”, and “Can the implementation of the current law be improved?” Inasmuch as assisted dying is happening in our nation under Oregon-type laws that legalize physician-assisted suicide, the pragmatic questions of how assisted dying should best be practiced must be addressed.

The Oregon law has permitted assisted dying for roughly two decades. Thanks to the annual reports of the Oregon Health Authority’s Public Health Division, as well as various studies by scholars conducting interviews, surveys, and document analysis, we have a clearer picture of how physician-assisted suicide functions in Oregon, and can

ii move on from theoretical concerns and arguments to ones based more definitively on evidence, or sometimes its absence. The large scale abuses and negative societal effects predicted by opponents of the law have failed to materialize. Yet a handful of troubling individual cases and the paucity of individual case review still give reason enough for concern.

The issues facing the Oregon approach to assisted dying are not unique. Other countries that have legalized their own versions of assisted dying have had to grapple with them as well. The Netherlands, for example, has a long and visible history of public debate, data collection, professionalization, and regulation of euthanasia. Additionally,

Belgium, Luxembourg, Switzerland, Canada, the Northern Territories of Australia,

Uruguay, Colombia, and Japan, all have faced the question of legalized or permitted assisted dying, and each has found their own responses to the challenges of allowing such a practice.

The response of each country has been based on its culture and approach to health care, but this does not prevent certain general aspects from being relevant to other cultures. That is the goal of my dissertation: to expose key gaps in the protections of the

Oregon Model and to propose solutions based on international practices.

Chapter 1 summarizes the history of legal assisted dying in the world in general, and in Oregon in particular; it also includes a list of commonly used terms and their definitions. Chapter 2 focuses on certain key aspects of the Oregon model, and the reasoning that underlies those sections of the law. Chapter 3 argues that the Oregon model is incomplete, that occasional and serious abuses and errors can still happen, and that the oversight provided by the current implementation would likely miss such errors.

iii

Chapter 4 looks at how the question of legal assisted dying has been handled in other countries, and how they have responded to the same challenges. Chapter 5 focuses on ways to integrate those solutions into the Oregon model, both as it is currently practiced and as it may be legalized in other states. Chapter 6 is a brief conclusion focusing on the future of assisted dying, especially in California.

Acknowledgements

This dissertation was written with the help and support of many. The Department of Bioethics funded important trips to the Netherlands and Canada to discuss the realities of assisted dying with actual practitioners and researchers. The Ethics Table provided additional travel funds for related research in Belgium. The faculty and other doctoral students in the Arts & Sciences Dissertation Fellowship contributed helpful feedback on early chapter drafts. Gerrit Kimsma and many others with direct experience in assisted dying shared their stories and views. Stuart Youngner, Mark Aulisio, and my committee gave continual support and constructive criticism. Barb and Marie helped with the logistics of trips, reimbursements, tuition, events, and much more. Dan, Sam, Taks,

Nick, Rajat, Liz, Corbin, Bree, Ivana, and Emily contributed immensely to my work/life balance. My dad and mom helped with coaching, morning calls, and unfailing encouragement; thank you especially. And I am grateful to my grandfather, my family, and everyone else, who reminded me to study hard.

Legalized Assisted Dying in America:

Improving on the Oregon Mode with Lessons from Other Countries

Abstract

JOHN WILLIAM FRYE, III

The Oregon model of assisted dying has nearly two decades of practice and evaluation. The large scale abuses and negative societal effects predicted by opponents of the law have failed to materialize, and several other states have passed similar laws in recent years. Yet a handful of troubling individual cases and the paucity of individual case review still give reason for concern. By focusing on certain key aspects of the

Oregon model, seven important theoretical and practical concerns come to light, such as the lack of assessment at self-administration, the distortion of the physician-patient relationship, and the lack of continuing professional guidance. Other countries that have legalized their own versions of assisted dying have had to grapple with such issues as well. While the response of each country is shaped by its culture and health care system, certain generally applicable principles can be inferred. These include the importance of training, physician presence, palliative/hospice care, and comprehensive research into the evolving practice. With these in mind, I propose several important modifications to the

Oregon model. These modifications are possible within the framework of the states that

vi currently allow assisted dying, but would best be implemented by adding legal requirements to these laws, and to similar laws that are under consideration in other states.

Chapter 1: Background, Literature Review, and Terminology

History of Physician Aid-in-Dying

Physician aid-in-dying has been a matter of ethical reflection in western societies since the early history of the profession. The Hippocratic Oath explicitly rejects the idea of euthanasia and assisted suicide, stating “I will neither give a deadly drug to anybody if asked for it, nor will I make a suggestion to this effect” (Markel, 2004). In contrast, the

Stoics were open to the idea that at times choosing death might be preferable to continuing to live, particularly if it is very difficult to continue to endure one’s life. The

Cynics and Epicureans similarly found suicide acceptable in certain circumstances

(Retterstøl, 1998). However, as Christianity spread, the idea of acting to end one’s life was seen as immoral, both on the basis of the Judeo-Christian commandment “thou shalt not kill”, which Augustine noted as including oneself, and with Aquinas’ agreeing with

Aristotle that life naturally seeks to preserve itself, so it would be contrary to the natural law to end one’s life (Barry, 2012). It was not until the Enlightenment and the search for a firm secular basis of morality was renewed by various scholars that the question was again examined from new perspectives. Some, like Kant and Hegel, found new justifications for the position against assisted dying, while others, such as Hume and later

Bentham, upheld the right of individuals to make their own choice regarding the time and manner of their deaths (McConnell, 1968).

The philosophical revolution of the Enlightenment was one spur for reexamining the question; the medical revolution of modernity has been another. With increasing knowledge regarding the causes and progression of diseases, as well as the probability of

2 successful intervention and potential side effects, doctors and patients have become more interested in the quality of life in patients who face suffering or are near death. Even as technology has provided more and more marvelous cures and palliation to a variety of conditions, some individuals still languish in pain, fear, uncertainty, and suffering of many forms. With the isolation of morphine in the 1880s, the possibility of providing a quick, easy, and painless death ushered in the modern euthanasia debate. The first debate on whether this should be legal in the United States took place in Ohio in 1905, when a bill to legalize voluntary euthanasia in certain circumstances was soundly defeated by the state legislature (Lopes, 2015). Euthanasia organizations formed and spread in the decades following, though the Nazi murder programs that were euphemistically termed

“euthanasia” set the public against such measures for several decades (Lopes, 2015). The march of technology, resulting in increased duration and medicalization of the prolonged dying processes, resulted in more consideration of the potential of an easy death to provide relief to patients in otherwise unbearable circumstances.

Thus it was that the Dutch Supreme Court case of 1973, known as the Postma case, first provided legal protection for doctors who sought to provide patients the only relief of their suffering that medical technology could afford: a quick, painless death.

Euthanasia was seen not as a right of the patients, but as the only possible way for a doctor to satisfy her duty to relieve suffering, which might trump the duty to preserve life in certain circumstances. The original court decision, and subsequent ones modifying it, still classified euthanasia as a crime but provided immunity from punishment if it were reported voluntarily, the patient qualified under a set of criteria, and proper procedures were followed. Underreporting was an issue (van Delden, 1999), and following decades

3 of studies and the creation of support organizations, including a group of physicians specially trained in the practice, the Netherlands legalized euthanasia in 2002

(“Termination of Life on Request and Assisted Suicide ( Review Procedures ) Act,”

2002). Since then, Belgium (2002) and Luxembourg (2009) have followed with largely similar legislation, focusing on the need to respond to otherwise unbearable, unrelievable suffering. The laws provide for an overseeing body to retrospectively review the cases for legality, and provide for the study and proposed modification of the practice as deemed appropriate by experts in the field.

Since its inception in the Netherlands, legally permissible euthanasia has been made available not just to those who are terminally ill or suffer from an untreatable debilitating condition, but also to some persons whose unbearable, unrelievable suffering is rooted in mental illness (Groenewoud et al., 1996), grief (Gevers, 1995), or diminishment of capabilities (Bendavid, 2013). In addition, the law allows for active euthanasia to be performed on a severely demented patient who executed a living will requesting such an action when they were still competent (M. L. Rurup, Onwuteaka-

Philipsen, Van Der Heide, Van Der Wal, & Van Der Maas, 2005). These and other controversial cases continue to cause public debate. Also, a recent court case has recognized the permissibility of infants in intractable pain receiving euthanasia upon parental request and following extensive investigation (Lindemann & Verkerk, 2008).

Despite this applications of the law that some argue indicate a slippery slope to immoral practice, the vast majority of euthanasia cases involve doctors with a long relationship with their patients responding to a persistent and well-reasoned request, following a second opinion of an expert.

In contrast to the euthanasia of the Netherlands, since 1942 Switzerland’s law on assisted suicide has only punished those acting from selfish motives; thus those assisting a suicide for compassionate motives commit no crime. Since the 1980s, organizations such as Exit and Dignitas have established their own internal standards for when to assist in a person’s suicide, and what processes and protections should be in place following a request. In many ways the system they have created is similar to the Dutch model, prioritizing the suffering patient and attempting to rule out other treatments before making lethal medication available, though there are no legal requirements for these measures. Assisted suicide is possible outside of these organizations and anyone is free to request the help of another, and there is no requirement that the requestor be a Swiss national, leading to cases of “suicide tourism” by some individuals in nearby nations, notably Germany. Since the government has not attempted to control or study the practice beyond establishing that cases of suicide conform to the standards of law, the majority of information available from Switzerland comes from Exit and Dignitas themselves (Lewy Guenter, 2011).

Other nations outside the US have at one point or another recognized some level of legal legitimacy regarding active euthanasia or suicide. Since 1933 the penal code in

Uruguay (Book I, Title II, Article 37) has allowed judges to waive sentences in cases of an honorable person committing compassionate homicide in response to repeated pleas from the victim (“Uruguay Penal Code,” n.d.). From 1962-1995, several regional court cases in Japan have set down or applied previous standards of active euthanasia (Hayashi

& Kitamura, 2002), though there has been no national or legislative agreement on the practice, so the current extent of such practice as well as its legal status are unclear. In

1995, the first modern law legalizing euthanasia was passed in the Northern Territories of

Australia, although it was overturned two years later by Australia’s parliament

(“Northern Territory of Australia Rights of the Terminally Ill Act 1995,” 1995). That same year, 1997, the Colombia Supreme Court legalized active euthanasia (Carlos

Gaviria Díaz, 1997); though the court opinion suggested several protections and limitations, and asked for legislative control of the practice, no official response was forthcoming from other branches of government until the Department of Health released guidelines in 2015 (Ministerio de Salud y Proteccion Social, 2015). Quebec legalized active euthanasia in 2014 (An Act respecting end-of-life care, 2014), and similar cases in other provinces led to the Supreme Court of Canada issuing a ruling in 2015 that legalized euthanasia for the whole country, though implementation was held back for a year to allow for legislation to clarify the details (Carter et al., 2015). In accordance with the ruling, the Canadian Parliament passed a new national law the following year to regulate the practice (Parliament of Canada, 2016).

History and Summary of the Oregon Law

A series of prior developments led to a favorable climate for the passage of

Oregon’s death with dignity law. In 1988, the Journal of the American Medical

Association published a short essay titled “It’s Over Debbie”, about a young oncology resident euthanizing a patient in response to a plea to relieve her intractable pain (“It’s

Over, Debbie,” 1988). This served to launch the debate at the professional level regarding whether death can be the least worst option in some cases. The debate captured

6 the public’s attention largely in response to the actions of Dr. Jack Kevorkian in assisting several individuals’ suicides, starting in 1990. In 1991, Initiative 119 in Washington would have legalized euthanasia for qualifying patients, and Prop 162 in California the next year would have legalized both euthanasia and PAS, but both measures failed at the polls. The California State Bar came out in support of assisted dying in 1987, and there was professional deliberation on the medical and legal considerations of assisted dying

(Baron, Bergstresser, Brock, Cole, Dorfman, Johnson, Schnipper, Vorenberg, Wanzer, et al., 1996; T. Quill, Cassel, & Meier, 1992). These included the restriction to competent, willing, informed patients, terminally ill or severely suffering, combined with safeguards

(such as a second medical opinion and a psychiatric evaluation) to confirm the patient’s actual condition.

In 1994, the citizens of Oregon voted by a slim margin to enact the proposed

Death With Dignity Act, which had many of the protections in the proposed laws and was similar to the California and Washington proposals, but notably only allowed the patient herself to be the one to initiate her death. Only 51% of the voters were in favor of the law, so the opposition quickly initiated a new referendum designed to repeal the practice before any assisted dying could be legally undertaken. Enactment of the law was delayed as a result of opponents claiming that the law violated the 14th Amendment’s equal protection clause, putting incompetent terminal patients at risk of suicide without sufficient safeguards. A preliminary injunction was lifted by the Court of Appeals in

1997, the same year in which Oregon voters rejected the repeal of the law in a second referendum, 60%-40%. So assisted dying became legal in Oregon, and the first qualifying patients were given lethal medication in the months following. This vote

7 occurred in the same year as the Supreme Court decisions Washington v. Glucksberg and

Vacco v. Quill, which upheld the legality of statewide bans on assisted suicide and their applicability to terminally ill patients, as well as the legitimacy of a state legalizing some form of assisted dying. Most states have laws criminalizing the practice, and physician- assisted suicide (PAS) remained a practice peculiar to Oregon in the coming years.

This was not the end of the legal challenges, however. In 2001 the Attorney

General John Ashcroft held that prescribing lethal medication violated the Controlled

Substance Act, which gave the DEA power to limit controlled substances to legitimate medical uses. The state of Oregon and others challenged the ruling, and the district court, appeals court, and Supreme Court all found in favor of Oregon, finally settling the issue in 2006. In the intervening years, the practice of PAS continued in Oregon. The law has not been seriously challenged in the courts or with attempts to repeal its provisions since.

Oregon’s Death with Dignity Act has several requirements before a physician can fulfill a patient’s request for lethal medication to end her life. The patient (a) must have a terminal illness (meaning six months or less to live) and (b) be currently competent, as judged by both the attending physician and an independent consulting physician. If the patient’s request could be resulting from impaired judgment, a psychiatrist or psychologist should be called to evaluate the patient. During the conversation, (c) each physician should discuss alternatives such as palliative care and hospice care with the patient. The prescribing physician must also confirm that (d) the patient is a resident of

Oregon. Following the initial request, (e) a two week waiting period is necessary. Then a second request can be made, (f) it must be in writing and (g) witnessed by two persons.

Following this, (h) the attending physician should contact a local pharmacist and inform

8 him of the prescription and the reason behind it to confirm that the pharmacist will be able to fill it, or the physician can deliver the medication to the patient herself.

Several forms must be sent to the Oregon Health Authority in accordance with the act. These include the written request, both physicians’ reports, any psychiatrist/psychologist’s evaluation, a pharmacy dispensing record, and a physician follow-up that confirms the death of the patient, notes details of his ingestion and whether a health care provider was present, and includes such information as the patient’s reasons, insurance coverage, and whether she was enrolled in hospice. The Oregon Health

Authority also has access to the patient’s chart to review other information as necessary to establish professional conduct and compliance with the act’s stipulations.

Beyond these legal requirements, a task force with members from several Oregon health organizations have added various non-binding ethical guidelines for proper action in all phases following a patient’s request (Haley & Lee, 2008). They advise doctors and others how to explore the patient’s request, provide for hospice or palliative care, insure continuity of care, and otherwise encourage responsible and conscientious practice. They also include recommendations for personnel not referred to in the law, such as nurses and emergency responders. Unlike the law or professional conduct requirements, however, no person is legally or professionally required to follow these recommendations.

According to the law, health care facilities can prevent their employees and subsidiaries from participating in a patient’s request for physician-assisted death by acting as the patient’s attending physician, or a consultant giving a second opinion or mental health evaluation. Participation of each physician, any psychiatrist or

9 psychologist asked to consult, and the pharmacist dispensing the lethal medication is voluntary and cannot be required on any legal, institutional, or contractual basis. For all contractual and legal purposes (such as settling life insurance claims), the patient will not be held to have committed suicide, but rather to have died a natural death as a result of the terminal illness. From the doctors’ reports, the Oregon Department of Public Health compiles and releases annual statistics regarding the practice: how many persons are receiving and taking lethal medication, whether any complications happened, the duration of the physician-patient relationship, various types of demographic information such as sex, race, insurance coverage (if any), hospice enrollment, underlying illness, etc. These reports enable evaluation of concerns on two fronts: whether disadvantaged individuals such as the poor, uninsured, uneducated, disabled, and other populations make disproportionate use of the law, and whether over time there is any sign of a slippery slope toward an overly expansive practice that undercuts the spirit of the original law.

For example, if after a decade the number of individuals enrolled in hospice dropped from 90% to 5%, that might be a sign that assisted dying is taking the place of other care rather than being used as one option of many.

Developments since Legalization

The requirement of gathering and publishing statistics results in annual reports regarding the number of prescriptions for and deaths resulting from lethal medication in

Oregon. These reports, along with studies released by the Oregon Health Department in

10 health journals,1 do not give evidence to support various fears of opponents of the practice, such as the uneducated, uninsured, disabled, or other disadvantaged groups making disproportionate use of the law; nor do they show a large increase in such deaths, or that such deaths make up more than a small fraction of the total deaths in Oregon

(under 1%).

Other scholarly studies have been undertaken to elucidate various aspects of the practice that the official statistics do not capture. Survey and interview studies on participating physicians’ views revealed that participating physicians have a variety of experiences with the law—e.g., some felt positive about helping familiar patients have a choice, while others felt conflicted over writing a prescription for patients they did not know well—but they are adjusting to the reality of the new practice (Dobscha, Heintz,

Press, & Ganzini, 2004; L Ganzini et al., 2000b). The quality of death experienced by such patients was significantly better in several ways than the deaths of nonparticipants

(Smith, Goy, Harvath, & Ganzini, 2011). Family members of the participants are largely supportive of the current practice (Linda Ganzini, Goy, & Dobscha, 2008), and more general surveys of groups such as psychiatrists, medical students, nurses, and others in the health professions tend to indicate support or at least only minor concerns that any new medical option might face.

In spite of the apparent normalization of the new practice, criticism of Oregon’s assisted dying law continues, and can be broadly categorized into two types. The first type is drawn from critics of the practice in general, who believe the practice of assisted

1 for a list of such studies, see https://public.health.oregon.gov/ProviderPartnerResources/EvaluationResearch/DeathwithDignityAct/Docu ments/publishedstudies.pdf

11 dying is dangerous and inappropriate if not morally wrong per se; such arguments tend to focus either on deconstructing and arguing against the analysis of studies that support the practice (Finlay & George, 2011), are based on theoretical or non-empirical arguments

(Callahan & White, 1996; Kass, 1989), or analyze individual cases that have questionable ethical aspects to them (Herbert Hendin & Foley, 2008). While these critiques largely conclude that Oregon’s approach to assisted dying is unsafe and generally undesirable, a few critical articles have taken a more constructive approach. These have come from opponents of the law (K. Foley & Hendin, 1999), or parties that are neutral or in favor of the law, who do not call for a cessation of the practice, but argue for certain additions or modifications to the law and practice of assisted dying in Oregon. Constructive criticism may be directed at any level of the practice: physician-patient interactions and how they could be more effective (Back, Starks, & Hsu, 2002), institutional policies and what they fail to address (Campbell & Cox, 2012), third party oversight and the need for more independent in-depth case review (K. Foley & Hendin, 1999), or modifications to the law itself to address these and other concerns (Cohen-Almagor & Hartman, 2001). The

Oregon law has had only very minor changes since it was enacted (such as requiring pharmacists be notified of the intended use of the prescription, and the data collection mechanism of the public health department (Altmann & Collins, 2007), none of which can be said to address the more substantial concerns pointed out by the law’s critics.

Since the Oregon law was enacted, many other states have taken it as a model for bills debated in their legislatures, and thus far Washington (2008), Vermont (2013), and

California (2015) have passed laws similar to Oregon’s. Washington’s is virtually identical, with the same requirements, safeguards, reporting, and annual release of

12 information in place. California’s law slightly expands upon Oregon’s language and protections: it specifies several aspects that were unstated or unclear (such as there being no requirement to refer and no ability for a facility to forbid a doctor from making voluntary referrals), makes knowingly coercing or unduly influencing a person to physician-assisted dying into a felony, adds a final attestation form to be signed by the patient within 48 hours of planned self-administration acknowledging their actions as intentional and voluntary, and places a 10 year time limit on the practice unless further legislation extends its legal standing (California & Material, 2015). Vermont’s law lacks several features of the Oregon model: while there are similar requirements for the patient, there is no annual release of information regarding the patients, reporting forms are available but their use is voluntary, and only the attending physician is required to make the report, not the consulting physician or pharmacist (Vermont Legislature, 2013).

Originally, starting July 1st, 2016 there was to be no need to report any action to the health department or even ensure that the patient gets a second opinion confirming the diagnosis, prognosis, or whether the patient is fully informed or capable of giving voluntary consent; however the legislature modified the law to preserve the original safeguards (Vermont Legislature, 2015).

Montana also recognized the legality of physician-assisted dying in 2009 through a state Supreme Court case. This case did not set down a list of protections or procedures for physicians to follow, nor forms to submit to other authorities, but merely noted that a close reading of several state laws involving consent, suicide, and the rights of the terminally ill revealed no indication that physician aid-in-dying is against the law, so if a

13 physician was charged with the crime of assisting in a patient’s suicide, that physician can claim the consent of the patient as adequate defense (Baxter v Montana, 2009).

Thus as of 2017 there will be two main versions of physician aid-in-dying legally available in the United States: the Oregon Model (followed by Oregon, Washington,

Vermont, California, Colorado, and the District of Columbia with minor variations), and the Montana Model (currently only in Montana, no special law but an acknowledgment that the practice is not illegal). The Oregon Model is the most familiar in popular conversation and debate due to its longer history, applying to a larger populace, greater body of scholarly research, and extensive media coverage of high profile cases such as that of Brittany Maynard. Because of this, it is also the basis for most other state proposals for assisted dying.

As such, this dissertation intends to critically examine the Oregon Model of assisted dying—both its underlying framework and its different realizations in Oregon,

Washington, Vermont, and California—toward the end of improving it and subsequent laws modelled after it.

Terminology

Throughout this dissertation, I shall use the word “suicide” in a descriptive, denotative sense to mean simply “self-initiated intentional death”. This term applies whether the act is irrational or rational, and regardless if it is done by a healthy 18 year old or a terminally ill 98 year old. I am aware that for some the term has connotative meanings regarding irrationality and the pointless loss of a long and potentially fruitful life, and that many persons, have had friends or family members end their lives in ways or at times that are troubling and defy understanding. Nevertheless, in scholarly debates

14 the term has been used in a more inclusive and value-neutral way, and so I intend to use it as well. As such we must consider how the term fits with several related terms, namely death with dignity, homicide, and euthanasia

Suicide and Death with Dignity: The Oregon law enabled a very specific form of self-initiated death: when a person is terminally ill (less than 6 months to live), and is confirmed to have such a prognosis and to be competent, a doctor can provide that person with medication to end his life at a moment of his choosing. This is referred to in the law and elsewhere under the label “death with dignity”. The law itself notes that for all legal purposes, “death with dignity” shall not constitute suicide. This is meant to avoid certain legal loopholes that would arise if such a term were allowed to apply (such as denying someone’s estate a life insurance claim based on a suicide clause, when he would die within a short time anyway and should not have to avoid death with dignity simply to collect on the insurance). It is not a moral pronouncement nor is there a need to be bound by such terminology in this discussion.

Suicide and Homicide: Inasmuch as suicide is a cognate of homicide, the definition of one should inform the other. Homicide is a descriptive legal term for when one person’s action (or inaction/negligence) causes the death of another. It is often subdivided thence to murder, manslaughter, accidental homicide, negligent homicide, vehicular homicide, etc., depending on the jurisdiction. Notably, there is the concept of justifiable homicide, which is not a criminal matter, and may include war, self-defense, and capital punishment, among others.

Suicide would then, by analogy, be when one person’s action (or inaction/negligence) causes her own death. However, both the legal tradition and common language exclude certain analogous acts. If a pharmacist fills someone else’s prescription incorrectly, it may be negligent homicide or involuntary manslaughter, but a homicide nevertheless. But if that prescription is for the pharmacist herself, and no one else was responsible for mis-filling it, then it would viewed not as a suicide but as an accidental death. There is no “accidental suicide” in modern terminology, since suicide by convention includes at least a certain degree of intentionality, so instead a term like

“unintentional self-inflicted death” is used (Silverman, Berman, Sanddal, O’carroll, &

Joiner, 2007). In this sense, wild reckless behavior with or disregard for one’s own life should not necessarily be termed “suicidal” since the person does not show an intention to bring about death. This reliance on intention, an internal and subjective criterion, can make properly categorizing some self-inflicted deaths unclear, which is less troublesome than when suicide or accident cannot be distinguished from homicide.

Suicide and Euthanasia: The distinction between suicide and euthanasia as overlapping or non-overlapping categories is quite important in discussing any form of intentional dying. In common parlance, the actions undertaken in the Netherlands,

Belgium, and Luxembourg are usually termed euthanasia, even when they might also be described as an assisted suicide, while in the USA only the term suicide is applied to legal assisted dying (and then primarily by opponents of the laws), and euthanasia is primarily understood as an action that requires the initiation of the active dying process by another (usually or exclusively a physician depending on context).

This distinction is not universally held, however. In the USA, a person must have a terminal illness resulting in a prognosis of less than six months to live in order to qualify for physician-assisted suicide, but in the Benelux region a person must instead have unbearable, unrelievable suffering to the point where death is preferred to life, though natural death may be years or decades away and no terminal illness present. Now consider the following definitions offered by one philosopher:

“In an act of euthanasia, steps are taken to allow a person who is dying to

die a death that he wishes to die, in preference to a death that he wishes to

avoid.

In an act of suicide a person arranges his death to avoid a life that he does

not wish to live, or in order to die a death that he wishes to die.”

(Fairbairn, 1995)

According to this distinction, the USA has euthanasia (since the person must be dying soon), while the Benelux countries have suicide (since the person wants to avoid living their life as it is), and the two may overlap.

As clear as such scholarly definitions may be, for this paper I shall use the terms suicide and euthanasia as they are commonly used in the public and scholarly debate surrounding the Oregon model and related practices. Hence except where expressly indicated, I will generally follow the American linguistic conventions that, with reference to the death-causing action, suicide is self-initiated, and euthanasia is other-initiated.

Summary of terms:

Active vs Passive: Active euthanasia refers to the intentional undertaking of actions that disrupt the body’s natural ability to sustain life; it is the use of (medical) technology and knowledge to achieve death more quickly. Passive euthanasia refers to the forgoing or withdrawing of life-saving or life-sustaining measures in a patient who would otherwise be near death; it is the refusal of medical technology and knowledge to avoid prolonging the dying process. Passive euthanasia has become generally acceptable in most countries, though in some places only recently: India accepted it in 2011 with strict oversight

(Magnier, 2011), and in Japan there has been a presumption against its use that is slowly changing (Hayashi & Kitamura, 2002). In many places, including the United States, this acceptability has coincided with the practice no longer being referred to as euthanasia, but rather simply forgoing treatment and dying a natural death. Unlike active euthanasia, passive euthanasia may not be easy or painless for the patient, but palliative care can help ease any suffering during the dying process.2 It should also be noted that while this division is viewed as a bright line by the law and organized medicine, philosophers and bioethicists have been critical of its moral importance regarding assisted dying or indeed the very notion itself (Brock, 1992)

2 While the active vs passive distinction is usually made with regard to euthanasia, as most suicides are considered active by their means, it is possible to conceive of a scenario that might constitute a passive suicide: for example, a patient who wants to die sooner rather than later so that his family can collect on a soon-to-expire life insurance policy, and thus allows a disease to kill him rather than accepting life- prolonging care (such as antibiotics) that would likely mean he would live too long for the policy to be in effect. What makes this act a suicide is that the patient’s death is intentionally sought, a means to an end rather than merely an accepted consequence of refusing treatment; furthermore, no one but the patient is the active agent in bringing the about, and the patient is fully capable of preventing or at least delaying the actual means of his death, so the death is arguably self-inflicted. This is distinct from a patient who intentionally turns off her ventilator because of the burdens associated with needing it to breath, but would not have her intentions frustrated should she fail to die as a result of being off the that ventilator; such an act is mere refusal/withdrawal of treatment. Passive suicide would seem to be just as legally acceptable as passive euthanasia, though it would probably not be labelled as a suicide for legal purposes. Such cases may be of theoretical interest but will not have much bearing on this dissertation.

Assisted Dying (AD): general term for all cases where death is sought knowingly and another performs an important role in either preparing or performing the death-causing act.

Assisted Suicide (AS): an act of suicide in which another person knowingly plays an active role in enabling the person dying, by procuring necessary items, or preparing other details

Death-causing action: the action which directly leads to death. Examples would include ingesting lethal medication, injecting a person (including oneself) with lethal drugs, initiating a lethal IV drip, turning on the helium flow into an air-tight bag in which one has placed one’s head, etc. It does not include actions that merely assist or enable the ultimate act, like giving someone the lethal medication for them to take later, or procuring and setting up necessary equipment. It also does not include such “actions” that are the mere undoing of other actions, such as turning off a mechanical ventilator or removing a feeding tube.

Euthanasia: the provision of a relatively painless and easy death to another person; this is usually taken to mean a doctor injecting lethal drugs into a patient at their request, but can occasionally encompass other means and perhaps persons.3

Medical aid-in-dying (MAiD): a term for the form of euthanasia legal in Canada in which either a physician or a nurse practitioner can assist. Since both physicians and nurse practitioners are highly trained health care professionals whose role in such cases is

3 In the Japan court cases, the rulings allow occasional justification of the family performing euthanasia if there is a strong reason why a doctor cannot help, with a note that the means must be “ethically acceptable” (Hayashi & Kitamura, 2002). In Canada nurse practitioners also have the same authority under the law that doctors do (Parliament of Canada, 2016).

19 identical, the distinction between the two shall for the most part be ignored and unless explicitly noted, MAiD shall be considered a subset of PAD defined below.

Physician-assisted death (physician aid-in-dying, PAD): A physician, acting as such in the legal or professional sense, intentionally provides the means of death to a patient, either by procuring the medication for them, or by introducing the medication into their body directly. This does not include the removal or withdrawal of treatment or any medical intervention, nor cases where a non-physician enables or performs the death- causing action.

Physician-assisted suicide (PAS): an action that is both physician-assisted dying and assisted suicide, such that a doctor assists a patient in preparing for death and the patient is the one who performs the ultimate death-causing action. In the Oregon model this is limited to ingesting medication, but elsewhere it may also include setting up a patient- initiated IV drip or some other method of taking in drugs

Suicide: self-initiated intentional death

Voluntary vs Non-voluntary vs Involuntary Distinction: Voluntary euthanasia occurs at the patient’s explicit (and informed) request. Non-voluntary euthanasia occurs without an explicit request when the patient’s wishes cannot be known (if they exist at all, for example a newborn or a person in a PVS state). Involuntary euthanasia occurs when a patient is capable of giving consent to euthanasia but has not, and excepting cases of capital punishment would constitute a criminal act in every legal jurisdiction. Note that suicide is assumed to be at voluntary, as non-voluntary self-initiated death would constitute an accident, while involuntary self-initiated death would likely lead to homicide charges against the source of the coercive impulse.

Chapter 2: The Philosophy and Practical Reality of the Oregon Model

In this chapter I shall examine certain key concepts of the Oregon Model of assisted death, as adopted in Oregon, Washington, Vermont, California, and now

Colorado and the District of Columbia. Much of the history discussed in the previous chapter antedates the original Oregon law, which was shaped in part by the practices in the Netherlands and Switzerland as well as the concerns that resulted.

The Oregon Model fits rather well within the notion of a classical liberal society, what I shall refer to as a permissive society, in which individuals are free to pursue their own concept of the good life (and in this case, the good death) so long as it does not interfere with the liberty of others to do the same.4 Some of the reasons for the Oregon

Model’s occasional departures from a permissive liberal approach to assisted dying include political expediency, prudence, and the realities of modern health care in the US.

These shall be discussed as relevant in the points below.

Each fundamental concept is drawn directly from the text of the state law. Except as otherwise noted, quotations beginning each section come from the Oregon law.

Patient Autonomy and Informed Consent:

ORS 127.800 s.1.01 7

4 This notion of society goes back at least to the works of John Stuart Mill, who "The only purpose for which power can be rightfully exercised over any member of a civilized community, against his will, is to prevent harm to others." (Mill, 1859) Such thought traces its way back to France’s Declarations of the Rights of Man and the Citizen: "Liberty consists in the freedom to do everything which injures no one else; hence the exercise of the natural rights of each man has no limits except those which assure to the other members of the society the enjoyment of the same rights. These limits can only be determined by law." (“France: Declaration of the Right of Man and the Citizen,” 1789)

"Informed decision" means a decision by a qualified patient, to request and obtain a prescription to end his or her life in a humane and dignified manner, that is based on an appreciation of the relevant facts and after being fully informed by the attending physician of:

(a) His or her medical diagnosis;

(b) His or her prognosis;

(d) The probable result of taking the medication to be prescribed; and

(e) The feasible alternatives, including, but not limited to, comfort care, hospice care and pain control.

ORS 127.830 s.3.04. Informed decision.

No person shall receive a prescription for medication to end his or her life in a humane and dignified manner unless he or she has made an informed decision as defined in ORS

127.800 (7). Immediately prior to writing a prescription for medication under ORS

127.800 to 127.897, the attending physician shall verify that the patient is making an informed decision.

The idea of making an informed choice is the bedrock of patient-centric medicine in America, as well as a foundational idea in a permissive society. A person needs to have relevant information regarding whether a given option will allow them to pursue their own version of the good. This includes risks and side effects, resulting in a duty to warn someone regarding an unsafe bridge, and provide appropriate labelling for poisons

(Mill, 1859). The year after the original Oregon law was passed, a SUPPORT study found that unwanted or medically futile life-prolonging measures were alarmingly

22 frequent (Connors, 1995). In response to this culture of aggressively prioritizing life prolonging irrespective of patient wishes and likelihood of success, the notions of stopping treatment and securing patient autonomy gained popular momentum, fueled in part by the awareness that sometimes death is the least bad alternative. During this shift, the idea of a means to achieve a swift and more desirable end through lethal medication struck a chord with the voters. The Oregon law requires the patient to be explicitly told about the medication’s intended purpose, its effects and potential side effects. But also, the doctor must inform her about alternatives that might be relevant to achieve the final goals she has for her life and death: comfort care, hospice, pain control, and anything else relevant to her particular situation. Thus, there is the idea that while assisted death is one of several options, it is not one to be taken without adequately considering alternatives, such as the other medical options.

The “choice” part of informed choice also is taken into account in the law.

Autonomy requires that one have “full use of [one’s] reflecting faculty”, and so readily be able to make decisions in one’s rational self-interest (Mill, 1859). Various concerns have been raised regarding whether patients receiving a terminal diagnosis are in a mental state that would allow for proper deliberation regarding their options, as well as whether a doctor could recognize mental conditions such as depression that should be addressed and might influence such a decision (L Ganzini, Fenn, & Lee, 1996). Should such a mental condition be suspected, a psychiatrist or psychologist would be called in to evaluate the patient before proceeding further.

Unlike many other criteria such as state residency, the making of an informed choice does not have immediate objective proof. Instead, evidence such as written

23 requests, and supporting documents like witness signatures, are taken to be sufficient proof that the patient is making an informed choice. Such witnesses must “attest that to the best of their knowledge and belief the patient is capable, acting voluntarily, and is not being coerced to sign the request.” (ORS 127.810 s.2.02-1, italics added). Coercion can be understood as “the deliberate interference of other human beings within the area in which one could otherwise act” (Berlin, 1969), and as such works against the personal liberty underlying a permissive society. In medical ethics, questions of coercion are debated when they concern preventing a person from bringing about self-harm, and indeed, it would be wrong to coerce someone out of assisted dying if that were their autonomous wish (Barilan, 2011), though such acts would at least have the result of a person continuing his life for a time and perhaps being able to act on his desire at a later date. Coercing a person to end his life is unacceptable in practically all situations, for health care professionals, family members, or anyone else. To make this abundantly clear and avoid the need to invoke any other laws, ORS 127. .890 s 4.02-2 makes it a

Class A felony if one “coerces or exerts undue influence on a patient to request medication for the purpose of ending the patient’s life, or to destroy a rescission of such a request”. Oddly enough, this refers to coercion regarding the request for medication, not the actual ingesting of the medication itself. We shall explore this distinction between access to medication and its administration more in chapter 3.

Medical Criterion: Six Months to Live

ORS 127.800 s.1.01 12:

"Terminal disease" means an incurable and irreversible disease that has been medically confirmed and will, within reasonable medical judgment, produce death within six months.

The Oregon Model stipulates that a patient qualifies for assisted dying upon having a terminal illness with less than six months to live. This is problematic in several ways: first, it is at best in tension with the permissive society model of assisted dying, which should be available to every rational person (such as it is in Switzerland, at least theoretically; in practice private assisted dying organizations have their own criteria for accessing whom they assist, but this is in keeping with a permissive society model since their criteria are not legal requirements). The six month distinction excludes some patients who would otherwise choose to make use of assisted dying, which caused at least one patient to subsequently commit suicide without outside help. (Herbert Hendin &

Foley, 2008) Additionally, some progressive diseases, such as Parkinson’s and amyotrophic lateral sclerosis, cause some patients to suffering increasingly and unrelievably long before it is likely to kill a patient, resulting in an unavoidably long period of excruciating waiting (T. Quill et al., 1992). These patients want an easy death for the same substantive rationale as patients who qualify, but are prohibited from accessing assisted dying by an arbitrary cut-off point.

Furthermore, it can be difficult to determine if a patient has less than six months to live; one doctor might think four months, another might think ten, based upon patient history, support factors, available treatments, optimistic or pessimistic outlooks, etc.

Death can be reasonably predicted when it is very close, but half a year of distance significantly increases the uncertainty. Exceptional patients have survived for nearly 18

25 months (Oregon Health Authority, 2011). But the opposite situation is much more likely: physicians commonly overestimate how long a patient is likely to live when it is more than two or three months (Selby, Chakraborty, Lilien, & Stacey, 2011). The vast majority of patients who doctors predicted would last between 6-12 months died in less than six months (Glare et al., 2003; Selby et al., 2011). While such estimates are likely revised several times as death approaches, this does mean that a significant number of patients who would qualify for hospice care and PAS under the six month rule have to wait longer than they should to obtain access to it. If such patients are suffering, then they have that much longer of a period before hospice care can attempt to address the causes, or physicians can consider assisted dying as an option. An optimistic physician may in fact be condemning her patients to several months or more of unnecessary suffering.

Yet there are several practical reasons to restrict the law to patients for whom death is predictably soon, and they stem from the reasons why we consider suicide or killing to be prima facie wrong. The general idea of suicide is often a source of emotion for many, because of its association with irrational actions and those who could have been saved by interventions and counseling; these individuals need and should receive such help. Yet some persons at the end of life can approach suicide as rationally as any other decision, and in such cases suicide qua suicide is not necessarily irrational

(Wittwer, 2013). Another reason to reject suicide is the resulting loss of the rest of one’s life, all missed opportunities, unknown possibilities, and the time that could be spent with others. Any such utilitarian calculation of benefits versus burdens or hedonic evaluation will inevitably have cases in which death is the least bad option (Henson, 1971). These

26 losses are often not as great near the end of life, and the predicted time lost (after the person chooses to end their life) is very likely to be filled with pain, suffering, and a general inability to enjoy life. Similarly, the wrongness of depriving another of her life- purposes is not present, provided the patient gives rational, informed consent, as the option or fulfillment of that death has a place among her other life-purposes (Young,

1979). Patients want to know that there is an easier end available, even if they do not choose to take it, as they do not have to be as anxious about future suffering during the disease progression and dying process (Linda Ganzini, Goy, & Dobscha, 2009). Family interviews after a patient’s death have demonstrated that its use corresponds with a significantly better quality of dying, including better symptom control and energy, as well as preparedness for death (Smith et al., 2011) Compared with anyone else who might want assisted dying, a patient with a terminal condition has the least to lose and, in a sense, the most to gain.

Western society has also largely accepted the idea of withholding or withdrawing treatment in order to allow a “natural death” if the patient prefers, a practice occasionally known as “passive euthanasia”. From a consequentialist point of view, allowing patients who are not dependent on medical technology to hasten their own death by active means is arguably similar to the right of severely ill patients to forgo life-sustaining treatment.

The relation between the two was examined in several court cases regarding assisted dying in the 1990s, culminating in the US Supreme Court rejecting the legal necessity of legalizing assisted dying given a right to refuse treatment at the end of life: though some individuals at the end of life could opt for passive euthanasia if they were dependent on life support, refusing active euthanasia for those at the end of life but not dependent on

27 life support did not constitute unequal treatment of persons in similar situations (U.S.,

1997). For those who nevertheless find merit in this argument regarding what should be morally licit, allowing assisted dying for terminal patients is as desirable and necessary as allowing other patients to forgo medical assistance and die as they prefer, but this would not extend to allowing assisted dying to any healthy person.

In this way, the practice would truly be “assisted dying”—in that the dying is occurring or will soon occur—rather than merely assisted suicide, which could take place at any point in life. The Oregon model gives a terminal patient the option for a self- managed death; this makes it distinct from Switzerland but also the Netherlands and

Belgium where a patient has to have unbearable, unrelievable suffering, but a terminal illness is not a requirement, so the patient may have years or even decades of (very difficult) life ahead of them. Canada’s law requires that a patient’s death be reasonably foreseeable but imposes no time constraint, and Luxembourg and Colombia similarly require a terminal condition be present without referring to a time period.

It is understandable why other countries have eschewed any exact temporal window for assisted dying. A time period is a troublesome standard to defend philosophically (and clinically, as noted above), as it is rather arbitrary, just like any standard that relies on age. Surely some 14-year olds are capable of driving responsibly, but they still have to wait two years. Many 16-year olds understand and can take charge of their own medical care, but it is still their parents who get the final say. In the latter case, if there is a conflict, the health care team and ethics consultants can advocate for the child, and if necessary legal measures can be taken to emancipate the child and put them

28 in charge of their own body. Thus the 18-year old standard is not a harsh limit, but there is no such wiggle room available in the six month rule.

There are also significant issues with putting the six month rule into practice

(Lynn et al., 1996). Unlike age, there is no objective measure for time remaining to a patient. Relying on the subjective judgment of the physicians will create significant individual variation in admissions depending upon their experience, regional culture, and tendency to be optimistic or pessimistic regarding their patients. A statistical approach, where a patient in a certain category (based on disease, gender, etc.) has an x% chance of surviving until 6 months, gives no insight into whether x should be 10, 20, 50, or some other number; each will result in variations among those categories as well as a variable number of patients who survive for years. Having a threshold of severity for different diseases, the approach used by the SUPPORT study of the 1990s, avoids some ambiguity but includes a great number of persons not commonly thought of as terminally ill—their study had many individuals survive for three years or more.

Despite these apparent problems, the six month threshold of death’s imminence is not a novel, untried concept in the medico-legal sphere; quite the opposite. Its history at least goes back to the early 1970s: for example a 1973 survey of Christian clergymen in the Cleveland on attitudes toward euthanasia equated “terminal illness” with an illness resulting in six months or less to live despite treatment (Nagi, Pugh, & Lazerine, 1977).

Also in 1973, a paper on the terminally ill’s right to refuse medical care noted six months to live as a significant time for the patients legal rights to be considered, and by 1977 this distinction was noted as having “potentially broad appeal” to legislatures considering living will statutes (Akers, 1977).

When Congress first authorized Medicare payment for hospice care in 1982, it kept the six month definition of “terminal” for determining who would qualify, leading to additional study of its use and accuracy (Forster & Lynn, 1988). States responded by amending their advance directive statutes to refer to the same period, although some, such as Oklahoma, did not do so until the early 1990s (Advance directive - Execution -

Specific nutrition/hydration provision - Form - Inclusion in declarant’s medical records -

Authority of proxy - Designation based on religious beliefs or tenets, 1992). At the time there was not significant opposition to this standard as unworkable or arbitrary. When critics of the six-month rule for PAS rarely if ever extend their argument to the same rule for hospice admission or living wills, nor do they offer an alternative criterion that could be preferable. Nor do they articulate substantive or procedural differences between the three to clearly show why the criterion is acceptable for the latter two but not PAS.

When the first modern vote on whether to allow assisted dying occurred on

Washington’s initiative 119 in 1991, part of the proposal was to go along with other states in modifying Washington’s previous living will law to define “terminal” as a life expectancy less than six months; an additional and separate part would grant access to both euthanasia and physician assisted suicide to such patients (Carson, 1992). In this way it was similar to a 1989 proposal for assisted dying in California that never came to a vote (Parachini, 1989). Limiting assisted dying to the six month threshold, and tying a new controversial practice to the updating of an accepted one, was arguably a matter of political expediency: attempting to benefit from a standard that had come into larger acceptance rather than proposing a new, more general or nebulous criterion. A similar matter of political expediency dropped euthanasia from the 1994 Oregon initiative, unlike

30 the earlier proposals in Washington and California, responding to concerns raised over

Dutch euthanasia practices at the time (Rae, 1992), and so the Oregon version became the first to be approved by a majority of voters.

The fact that such a rule was already in place and sufficiently effective for years makes it a defensible point for the option of assisted dying to be possible as well. It also implicitly ties considerations of assisted dying with other discussions regarding end-of- life care rather than create multiple standards that a physician would have to evaluate independently. Having the same standard ensures that patients who qualify for assisted dying necessarily have access to hospice care as well, rather than creating a gap period in which they would have access to lethal medication but not to end-of-life services, or vice versa.

Importance of Physicians

ORS 127.815 §3.01. Attending physician responsibilities. (1) The attending physician shall:

(a) Make the initial determination of whether a patient has a terminal disease, is capable, and has made the request voluntarily;

(b) Request that the patient demonstrate Oregon residency pursuant to ORS 127.860;

His or her medical diagnosis; (B) His or her prognosis; (C) The potential risks associated with taking the medication to be prescribed; (D) The probable result of taking

31 the medication to be prescribed; and (E) The feasible alternatives, including, but not limited to, comfort care, hospice care and pain control;

(d) Refer the patient to a consulting physician for medical confirmation of the diagnosis, and for a determination that the patient is capable and acting voluntarily;

(e) Refer the patient for counseling if appropriate pursuant to ORS 127.825;

(f) Recommend that the patient notify next of kin;

(g) Counsel the patient about the importance of having another person present when the patient takes the medication prescribed pursuant to ORS 127.800 to 127.897 and of not taking the medication in a public place;

(h) Inform the patient that he or she has an opportunity to rescind the request at any time and in any manner, and offer the patient an opportunity to rescind at the end of the 15 day waiting period pursuant to ORS 127.840;

(i) Verify, immediately prior to writing the prescription for medication under ORS

127.800 to 127.897, that the patient is making an informed decision;

(j) Fulfill the medical record documentation requirements of ORS 127.855;

(k) Ensure that all appropriate steps are carried out in accordance with ORS 127.800 to

127.897 prior to writing a prescription for medication to enable a qualified patient to end his or her life in a humane and dignified manner; and

(l)(A) Dispense medications directly, including ancillary medications intended to facilitate the desired effect to minimize the patient’s discomfort, provided the attending physician is registered as a dispensing physician with the Board of Medical Examiners, has a current Drug Enforcement Administration certificate and complies with any applicable administrative rule; or

(B) With the patient’s written consent: (i) Contact a pharmacist and inform the pharmacist of the prescription; and (ii) Deliver the written prescription personally or by mail to the pharmacist, who will dispense the medications to either the patient, the attending physician or an expressly identified agent of the patient.

(2) Notwithstanding any other provision of law, the attending physician may sign the patient’s death certificate.

Like all other countries to legalize assisted dying except Switzerland, the Oregon model requires a licensed health care professional to handle the patient’s request. The attending physician is responsible for verifying that the patient qualifies under the various provisions of the law. Unlike several other countries that require physicians to make subjective judgments regarding whether their patients are suffering unbearably and unrelievably, the Oregon model only requires physicians to discern if the patients’ prognosis is less than 6 months, and if the patient has the mental capacity to make the decision. Both disease prognostication and capacity assessment are required of physicians in their roles already, the first for hospice qualification and the second for any important decision the patient makes, so no additional training is required to fulfill the terms of the law. Similarly, physicians should be well-versed in the process of informed consent generally as it is necessary in any discussion of medically viable options with a patient.

The physician is also responsible for ensuring the patient has access to the lethal medication if he does qualify. The American Society of Health-System Pharmacists has maintained the pharmacist’s right of conscience to choose whether to dispense medication for physician-assisted dying (American Society of Health-System

Pharmacists, 1999). To prevent that being an issue for a patient, the physician must either find a willing pharmacist or dispense the medication herself.

One of the predicted consequences of legal physician-assisted death is resulting distrust in physicians, who as a professional will have broken their own commitment to always heal and do no harm (Kass, 1989). In order to place complete trust in my physician, to allow her to take care of me when I am most vulnerable and guide my care in ways that I may not fully understand, it does help to have confidence in her expressed attempt to do right by me, and “do not kill” is an example of that. This can be seen a specific case of a more general reason why killing is argued to be wrong: that the wrongness of killing is a necessary condition for individuals to come together and form a society (Ewin, 1972). However, the fact that a veterinarian will offer to euthanize a terminally ill dog does not stop pet owners from trusting her on matters of health at other times, nor does it hurt their relationship.

To be sure, a breach of duty or general decline of trust in doctors would have more serious personal and societal consequences than their equivalents for veterinarians; yet, we now have several states and countries in which the legal practice takes place without a perceptible shift in social perceptions of physicians. Indeed, in requiring the physician to make certain non-binding recommendations to the patient, such as talking with one’s family about the medication and having someone present during ingestion, as well as discussing hospice and palliative care, the doctor is clearly being asked to act as more than a mere verifier of disease and dispenser of medication. However, once the patient has access to the medication, the only mention of any continuing relationship or responsibility is that the doctor can sign the patient’s death certificate.

Assisted dying involves striking a balance between the patient’s autonomy in deciding the time and manner of his death, as noted above, and the health professional’s duty in caring for her patient’s well-being. In the Oregon Model, autonomy is the clear winner. The rhetoric behind and justification for the practice has focused on the patient's choice and action rather than the physician’s. Indeed, the actions required by the physician by the law make no reference of any duty toward the patient’s condition, addressing or attempting to relieve any suffering, or otherwise practicing the healing arts.

Palliative care and hospice care are included as “alternatives” to assisted dying, options for the patient to consider rather than for the physician to recommend or attempt. Such professional duties are perhaps assumed rather than stated, but their presence and importance is not integrated within the underlying framework of the Oregon Model.

Time to Think Things Over

ORS 127.850 s.3.08. Waiting periods.

No less than fifteen (15) days shall elapse between the patient's initial oral request and the writing of a prescription under ORS 127.800 to 127.897. No less than 48 hours shall elapse between the patient's written request and the writing of a prescription under ORS

127.800 to 127.897.

Two different but potentially overlapping waiting periods are mentioned in the

Oregon law. The written request can come at the same time as the oral request, or any time thereafter. The juxtaposition of the waiting period with the right of the patient to rescind, as well as the requirement that at its end the physician remind the patient that he can rescind the request, indicates that one of its purposes is to ensure that this is not a

35 mere momentary request of the patient, but a well-thought out intention that has persisted through reflection and remained strong enough to reiterate, in keeping with the reflective rational ideal of a permissive society. Patients with terminal cancer, for instance, are often depressed or hopeless; these emotions were found to be strong predictors of a desire to hasten death (Breitbart et al., 2000). Yet depression itself is neither necessary nor sufficient in determining that a patient cannot make life-and-death decisions (M. D.

Sullivan & Youngner, 1994).

The two week period allows the health care team to complete their assessment of the patient, and attempt to address any issues that might have bearing on the decision. If there is treatable depression or anxiety, the doctor can attempt to alleviate it as best as possible in the time the patient has left, as well as evaluate if it is impairing rational voluntary action regarding assisted dying. The doctor has to mention the alternatives that are available to the patient, and in those two weeks any interventions that can be undertaken to address or ameliorate the discomforts that cause the patient’s desire for an assisted death have time to be explained and in some cases implemented. While this should not mean that such interventions are not considered, nor the patient’s needs met until he makes the initial request, it does at least allow for one more chance to make such interventions work if they have not already. The practice privileges the state’s interest in preserving life over the idea of value-neutral permissive society in which persons prioritize their deaths however they wish according to their own ideas of the good life.

Double-checking the Important Details:

ORS 127.820 s.3.02. Consulting physician confirmation.

Before a patient is qualified under ORS 127.800 to 127.897, a consulting physician shall examine the patient and his or her relevant medical records and confirm, in writing, the attending physician's diagnosis that the patient is suffering from a terminal disease, and verify that the patient is capable, is acting voluntarily and has made an informed decision.

Built into the Oregon Model is the need for a second opinion regarding both the medical diagnosis/prognosis as well as the informed consent of the patient. The consulting physician will be submitting a form indicating their agreement with the primary physician on those two points, so the primary physician is bound to find a consultant who agrees with her before continuing. While not strictly required in a permissive society, this precaution serves to protect the physician’s role in two important ways. First, it provides a check against medical errors that might lead to a patient having other treatment or care options available that would alter the prognosis and could influence the patient’s request, or perhaps render him ineligible should his disease be more manageable than the first physician thought.

Secondly, it provides a second evaluation of the patient’s decision. It prevents

(perhaps well-intentioned) doctors of having sole authority whether lethal medication ends up in the hands of a patient who may be coerced by others or may lack the capacity to make such an important decision. True, the attending physician is likely to be in a much better position to assess the patient’s mental state and decision-making process, as she almost always has a more extensive relationship with the patient and the discussion of assisted dying can take place over several visits. And since the consulting physician does not have any special training regarding such consultations or requests, it can be much

37 harder to do more than superficially engage the reasoning of the patient, his mental condition, and consideration of alternatives. Nevertheless, the additional conversation with another professional provides an extra check against such a doctor making an honest mistake or seeing what she wants to see in a patient whose request may be less than clear in its motives or reasoning.

Mental Health Considerations:

ORS 127.825 s.3.03. Counseling referral.

If in the opinion of the attending physician or the consulting physician a patient may be suffering from a psychiatric or psychological disorder or depression causing impaired judgment, either physician shall refer the patient for counseling. No medication to end a patient's life in a humane and dignified manner shall be prescribed until the person performing the counseling determines that the patient is not suffering from a psychiatric or psychological disorder or depression causing impaired judgment

Unlike the law that was passed in the Northern Territories of Australia in 1994, the Oregon law does not include mandatory review by a psychiatrist or psychologist.

Rather, should a doctor—either the prescribing physician or the consultant—suspect that a mental condition may be affecting the patient’s judgment, only then will a referral for a mental health consultation be made. This optional, as-needed measure attempts both to ensure that patients with any mental impairments or other contraindications that may result in a non-rational suicide get the help they need, while nevertheless preventing psychiatrists from being the “gatekeepers” to assisted dying (M. Sullivan, Ganzini, &

Youngner, 1998).

The “as-needed” aspect of the Oregon Model fits well within a permissive society’s approach to assisted dying, in that other citizens should necessarily allow one to actualize rational, reflective decisions (given the lack of harm to others); acts of those not in their right minds, or being unduly influenced by outside factors, can and often should be hindered (May, 2002). Doctors are already responsible for assessing each patient’s capacity to make a given decision whenever it is posed. Having this enshrined in the law does not add an additional burden to the process, but rather recognizes this particular decision is grave, irreversible, and outside the normal aims of medical practice.

Depression and other mental illnesses can lead to desire to die that falls outside the reasoned, voluntary decision the practice is meant to allow. A request for death can indicate complex psychological motivations that only reveal themselves with extended conversation (Muskin, 1998). Mental health professionals themselves may be uncertain regarding their ability to diagnose patients in only one session (L Ganzini et al., 1996), and so a single interview with a patient may not accomplish much, though the use of professional screening tools and conversations with family members may provide some assistance (Werth, Benjamin, & Farrenkopf, 2000). The perception of such possible confounding conditions is cause for evaluation, and the law provides for such evaluation and the filling out of recommended forms as pre-appointed evidence to support the decision to fulfill or deny the request of the patient.

Self-administration:

RCW 70.245.010-12: ‘Self-administer’ means a qualified patient's act of ingesting medication to end his or her life in a humane and dignified manner.

There is no express part of the Oregon law singling out the notion or method of self-administration, but it is implicit in the wording: the law only grants doctors the power to prescribe and dispense the medication to the patient, and ORS 127.875 s.3.13. makes reference to the patient ingesting the lethal medication. When a similar law passed in Washington, it included the above definition. Vermont (VSA 18.113.5282 and throughout), California (HSC 1.85.443.1-p), and Colorado (CRS 25.48.102-15) have followed Washington in making self-administration an explicit part of the law. The

District of Columbia law has no such explicit definition but simply uses the term “ingest” throughout.

The need of the patient to administer the lethal medication to themselves brings the Oregon Model in line with the Swiss approach of assisted suicide, but is at odds with the practice of other areas such as the Benelux countries, Canada, Japan, Colombia, and

Uruguay that allow for the doctor to inject the lethal dose. It is noteworthy that earlier attempts in the United States to allow for such acts of euthanasia failed to pass in several states, and only self-administered assisted dying is allowed in any state thus far.

It is possible that euthanasia—killing another person (at their request) provided they qualify under the relevant criteria—would be not be consistent with a permissive society. Such a society may allow one person to do whatever they want to themselves in isolation, but can place limits on actions requiring two or more parties. On the one hand, individuals are free to pursue contracts and associations however they wish provided no one comes to harm, based on the harm principle (Mill, 1859). Yet while incidental injuries from sports or combat, and perhaps even intentional injuries such as willful submission to corporal punishment or sadism, may skirt this definition given the

40 voluntariness of the participation, this does not necessarily entail that all consented harms are allowable. Some have argued that voluntary amputation or cannibalism cannot fall under a permissive society’s allowable actions (Baker, 2009), though a person who is truly alone would not be violating any tenet of a permissive society by amputating their own arm without assistance. In such views there could be a small but distinct subset of actions that one could do to oneself but never legally ask another to do to oneself, and conceivably the consented “harm” of reducing the time of one’s remaining life to zero might be one such action. An opposing view is that such controversial actions, and euthanasia in particular, are allowable so long as the consent is somehow assured to be authentic (Feinberg, 1986).

Having a patient administer the medication to himself, in full knowledge of what he is doing and what will result, is one way in which the consent of the patient to the assisted death can be rendered more evident. It eliminates any legal ambiguity in cases that would result from a doctor euthanizing a patient who has not consented to that action at that particular moment, and makes it at least somewhat less likely that the patient is submitting to the will of another rather than acting on his own. Thus it acts as a partial brake against the possibility of a slippery slope from voluntary euthanasia to non- voluntary euthanasia, as a patient taking the pills in a non-voluntary way would not be a suicide but an accidental death (or a homicide, if the pills were intentionally fed to the patient without his knowledge).

In some cultures and individual outlooks, there is great deference to the role and person of a doctor, perhaps even to the extent that a person may be willing to submit to what a doctor thinks is appropriate, but would not of their uninfluenced volition accede to

41 killing themselves alone. This is why some argue that doctors must not kill nor help the patient acquire lethal medication: the doctor’s mere assistance justifies, permits, or validates an action that the patient might not otherwise undertake (Kass, 1989). In a small interview study, most physicians in the Netherlands and Belgium preferred that the patient be the person to broach the subject, sensitive to the fact that a patient might see them as promoting euthanasia otherwise (Borgsteede et al., 2007). However, this may not always be possible, since in Vermont, a doctor is required to inform a patient of all medically available options, which for a terminal patient would include assisted dying.

(There may also be occasional clinical situations where physicians have good reasons to start the conversation themselves (Buchbinder, 2017).)

Having the patient commit the final act is the most important realization of this notion that the patient should take charge. The physician does not have the role of executioner, but instead is sidelined to being a mere observer. In states practicing the

Oregon model, the majority of prescribing physicians are not even present when the patient self-administers the medication. This absence does clearly separate the physician from the patient’s choice to end their own life, but it also can have some negative consequences as the next chapter will discuss.

Collection and Publication of Statistics

ORS 127.865 s.3.11. Reporting requirements.

(2) The Health Services shall make rules to facilitate the collection of information regarding compliance with ORS 127.800 to 127.897. Except as otherwise required by

42 law, the information collected shall not be a public record and may not be made available for inspection by the public.

(3) The division shall generate and make available to the public an annual statistical report of information collected under subsection (2) of this section.

One practical argument against the legalization of assisted dying is that it would be disproportionately used by certain vulnerable populations—cultural minorities, the poor, the disabled, the uneducated, the uninsured, etc.—who might not be in a position to ensure as high a standard of quality of life as others with the same disease would be able to (New York State Task Force on Life and the Law, 1994; Snyder & Sulmasy, 2001).

Such individuals might feel societal or familial pressures to remove themselves early rather than live life as long as they would wish. Alternatively, they could view their lives as inherently less valuable than that of others in better circumstance, and so feel that ending their lives was somehow the appropriate response rather than continuing a lesser existence. Also, early studies in the Netherlands indicated that even a permissive approach would face (at least initial) problems regarding reporting of cases, adherence to guidelines, standardization of medical practice, etc. (van der Maas, van Delden,

Pijnenborg, & Looman, 1991).

To address these concerns, the Oregon Model requires that data are collected on each patient and submitted to a central authority, to be statistically analyzed and presented to the public as a check against any systemic problems or abuses. Information is presented so that it cannot be associated with any individual, but reports on who makes use of the practice, the underlying disease, the reasons for choosing assisted death, whether they die of the medication or not, whether any complications from the

43 medication result, and various demographic information regarding age, race, sex, religion, insurance status, hospice enrollment, etc. To date, no analysis has indicated that any of the original concerns has been realized in Oregon (Battin, van der Heide, Ganzini, van der Wal, & Onwuteaka-Philipsen, 2007; Hedberg, Hopkins, Leman, & Kohn, 2009).

The goal of releasing these studies is merely to inform; unlike their Dutch counterparts, they are not accompanied by illustrative cases, nor recommendations for how to practice assisted dying in various circumstances. Such cases can only be found in the media, professional literature, and perhaps the private training of health care workers.

Recommendations of practice must come from professional societies and health care organizations. They might not be publicized and would be non-binding in a legal sense with regard to the law itself, though professionalism could help them be self-enforcing.

Patients choosing assisted dying are in effect participants in a social experiment, a literal example of the idea of the “laboratory of the states” at work. The annual reports are the findings of this experiment, designed to answer particular questions raised when the practice was first considered. Washington’s law followed Oregon’s in providing for such data release, but in light of the findings in each of those states, Vermont’s law has no such requirement for data analysis and publication. California, Colorado, and the

District of Columbia all provide for the release of annual statistics similar to Oregon and

Washington.

Conclusion

This chapter has not been an exhaustive look at the law’s details, but it has covered the main points of the Oregon model. Along the way we have seen a few of the

44 issues that have been predicted to arise in assisted dying, and how the Oregon model has attempted to answer them. The next chapter goes into further depth regarding several such issues, and the inadequacy of the current law to address them.

Chapter 3: Problems with the Oregon Model

Introduction

This chapter discusses in detail various problems with the Oregon model. Most have to do with the design of the practice of assisted dying, and whether it truly instantiates the philosophical position that justifies it. Some are questions of process, and whether the system is as robust, humane, and compassionate as it could reasonably be expected to be. Others are theoretical concerns that are hard to either prove or disprove empirically. A few have their basis in problems raised by individual cases that, while not likely to be the norm, nevertheless should be considered.

Some problems are adequately addressed by the Oregon Model or relatively straightforward extensions of it: medication recipients who live longer than six months, troubles with self-administration, and complications following ingestion. I will briefly discuss these problems and their solutions, before examining at greater length seven issues that concern the fundamental and practical aspects of the Oregon Model. These latter concerns are: (A) lack of assessment during administration, (B) lack of medical presence at ingestion, (C) distortion of the physician-patient relationship, (D) the perceived moral equivalency of assisted dying to other options, (E) suffering patients with too long to live, (F) limited quality control, and (G) lack of continually updated professional guidance.

Problems that are Adequately or Easily Addressed by Extension

Living Too Long:

Consider the following situation: a physician estimates a patient’s lifespan to fall within the six month window, and gives her a prescription. The patient then proceeds to live for another 14 months with her condition, before finally dying a natural death.

Critics will say that the patient should not have qualified under the law, and point out that many others who did kill themselves under the law may have lived longer than six months as well, and there is no way to know how many months were forfeited thanks to pessimistic physician prognostication.

As noted in the previous chapter, physicians are far more likely to overestimate how many months a patient has to live than to underestimate it. (Glare et al., 2003; Selby et al., 2011) Furthermore, this criticism can be directed just as cuttingly against admission to hospice. If a patient deemed to have less than six months to live is enrolled in hospice, and lives for over a year, her initial qualification might be suspect, but another patient with the same symptoms and disease progression might have died earlier, given the different conditions in his life (family, support, diet, will to live, important events to look forward to, incidental health concerns that arise later, etc.). Inasmuch as it would be wrong to deprive the second patient of hospice care, it would be wrong to deprive the first of it as well, since medically they have the same prognosis.

Unlike actuarial science, prediction of death on the individual level is not sufficiently exact to make such distinctions, so the hospice system allows for unlimited renewals of the six month period so long as each time, the medical judgment is that the patient will die within six months. Such recertification might be seen as also necessary with regard to qualifying for assisted dying; in a practical sense, however, if a patient has

47 lived through those six months without making use of the pills, there is reason to believe that she will not take the medication until her life has taken a notable downturn, making the risk of a suicide outside of the window of the law less likely. Unlike hospice, extensive services and care are not involved in the patient’s continued access to such medication, so there is less financial pressure to ascertain the patient’s qualification.

Such a patient is likely to be enrolled in hospice, and to undergo such reassessment for that reason, so in most cases the point is moot.

Too Much to Swallow:

Another potential issue is the trouble with self-administration. Given the weakened condition of the likely patient population, it is likely that at least some will need to be spoon-fed the medication. If it were any other medication, massaging the throat might aid the act of swallowing, but for lethal medication is that too much assistance? At what point does such help undermine the very idea of self-administration?

I would say the solution is relatively easy. There is nothing special about the oral ingesting of medication. When it comes to self-administration, the law itself seems to presume swallowing pills, but this would not seem to rule out use of an NG or PEG tube if the patient is still the administrating agent. What matters is that there is no other moral agent acting in between the patient’s initiation of the drug and its actual administration.5

However, placing a nasogastric tube or percutaneous endoscopic gastrostomy tube is a painful and unnecessary procedure. Though it might not fall strictly within the bounds of the current laws, this can be easily provided for by a device that allows the

5 Provided one is concerned in maintaining the distinction legally enshrined in the Oregon Model, preventing physicians from having any direct role in causing the patient’s death

48 patient to administer the drugs via an IV that has previously been set up. Such devices have existed for decades, notably Dr Kevorkian’s Thanatron and Dr Nitschke’s

Deliverance Machine from the 1990s. Today, Canadian patients have the option of initiated IV infusions by hand thanks to an elastomeric pump. (Buna & Trouton, 2017) A doctor or other health care professional would have to assist in the setup, and likely be present to ensure everything functions as designed following the patient’s actions. This option might be preferable even in cases where a patient can swallow but only with difficulty: their use would avoid resulting discomfort, the risk of taking too little too slowly, and the need for assistance that reduces the patient’s own actualization of their intentions. The oral route should still be preferred for reasons of ease and convenience, but in exceptional circumstances this method of intentional patient- initiated death is clearly in line with the spirit of the law. If a patient could not ingest the medication orally but could make use of such a machine or IV setup, it would seem to be a case of disability rights for him to have legal access to it.6

Medication Complications:

A third concern is that the taking of the medication would result in various complications; the forms submitted to the Oregon Health Department includes a section on whether any occur following ingestion, noting seizures and regurgitation as two

6 Not all euthanasia devices would be suitable under the current law: Kevorkian’s Mercitron and Nitchske’s Exit International euthanasia device use a gas mask or plastic bag to deprive the patient of oxygen, substituting carbon monoxide and nitrogen respectively. Assistance is again required during setup, but while the patient initiates the flow of gas (and thus the act is intentionally self-initiated death), it does not make use of lethal medication and so would not be covered under the letter of the law even if it is extended to include other methods of medication administration; the patient might forfeit any protections (like life- insurance policies and cause of death identification) that would be maintained if they had made use of the law.

49 possibilities but with space to write in others; these complications are very rare, with less than 0.1% (1/1419) of patients have been reported as seizing, and 2.4% (34/1419) experienced regurgitation (Oregon Public Health Division, 2016; Washington State

Department of Health, 2016). Six patients have subsequently woke up after taking the medication (Oregon Public Health Division, 2016); the first such individual was confused why he was not dead, and later died a natural death. (Herbert Hendin & Foley, 2008)

These possibilities are listed as reasons why assisted death can be dangerous and does not always provide the peaceful death a patient wants.

These concerns do not negate the patient’s right to make an informed choice, however. Part of prescribing any medication is to note both the likely effects and potential side effects that may occur, and this is acknowledged in the Oregon law (ORS

127.815 §3.01c) and the others as well. Thus, the patient should already know about the risks before taking the medication, and do so in full knowledge that a peaceful death is only the most likely outcome, but not assured without any complications. In discussing the situation with their patients, doctors should perhaps note that the efficacy of the medication in bringing about death could possibly be affected by the current constitution of the patient, and that making sure they take the full dose is the best way to ensure the intended result is achieved. Having a health care professional present at the administration of the medication could also help allay concerns of the patient and others present by providing a trained eye to assess the situation should a complication arise.

Though these concerns are not ideal, they indicate attempts to hold aspects of assisted dying to a higher standard of practice than the same actions in different contexts: accurate prognostication for hospice, administration of non-lethal medication, and

50 elimination of side-effects. Assisted dying may not be normal medical practice, but it does involve normal medical acts that already have a high standard.

However, other aspects of physician-assisted suicide in the United States are not held to a sufficiently high standard. We turn now to the unanswered problems of the

Oregon Model.

Lack of Assessment at the Time of Self-Administration

“ ‘How about having some more of this stuff?’ I hold out my hand with another pair of pills.

She opens her eyes, leans forward, and looks at the pills. Then she looks up at me and back down at them and back up at me.

[She asks,] ‘What are those for?’

‘These are the pills you wanted. Can you take any more?’

‘I don’t know… what were we talking about?’ ” (West, 2009)

The Oregon model provides for extensive assessment of the patient’s physical and mental condition, and protections against a patient in mental distress, delirium, or in momentary loss of their rational faculties, from gaining access to the medication without first having been evaluated. However, once the medication is in the patient’s possession, all protections regarding the patient making an informed decision disappear. Weeks or months may pass before the patient finally ingests the medication. In the ideal case, the patient is acting on a long-held rational desire, having forewarned family and friends of the date and time, and perhaps had them present to bid them farewell.

That is the ideal case, but the law does not require anyone to know of the patient’s intentions, and no announcement needs to be made.7 Indeed, the Oregon Model does not require anyone to be present at the final moment. The need to take dozens of pills makes it unlikely that a patient would absent-mindedly or accidentally ingest enough to kill themselves, but there are other possibilities. The patient may take the medication intentionally but when they are in a particularly depressive mood, or otherwise unable to fully reflect on their decision. Though getting closer to death is not associated with an increased likelihood of a mental illness diagnosis in cancer patients (Lichtenthal et al.,

2009) and advanced cancer is associated with initial but not recurrent major depressive episodes (Gurung, Lukens, & Kanneganti, 2016), this does not rule out the possibility that a patient taking the medication may not be acting in a voluntary, intentional manner with appropriate mental capacity.

More problematic would be the involvement of others, because different persons will take the pills for different reasons, as illustrated by the story of Robert Good.

(Honea, 2011) He described himself as having them because he was a “big coward”, but also not wanting to live a lingering life completely dependent on his wife, the way his mother-in-law was. In a very supportive situation, on a particularly bad day near the end,

Good looked up at his wife and said ‘Do you want me to [take the pills]? I will if you want me to.’ His wife said it was not her choice, and Good went on to die a natural death.

Good’s wife did not let her compassion for her husband, nor her desire for his suffering to end, to allow her to substitute her wishes for his choice, but this is no guarantee that

7 Except in California, where the law requires that the patient sign a final attestation that they intend to take the pills within 48 hours. This form is not required to be witnessed, nor is any individual named as responsible for adding it to the patient’s medical record or submitting it to any authority for review.

52 others would not respond to such a question differently. Family and loved ones, especially those personal caregivers who put their lives on hold to take care of others, can sway a patient’s actions one way or another. Family might be taken by patients to be in support of suicide sooner, rather than later, because of the burden the patients believe they are imposing on family, rather than because of the suffering the patients themselves are enduring.8

It is also possible, though hopefully very unlikely, that a family member or other close individual would feed the pills to the patient without their knowledge or consent. In the book The Last Goodnights the author details the true story, quoted above, of his spoon-feeding a cocktail of pills to his mentally impaired mother to help her die, as she had requested earlier in her more lucid moments.9 (West, 2009)

The Last Goodnights case, which occurred in California but predated that state’s assisted dying law, is an intentional death that was undertaken without safeguards, in complete secrecy and against the law. It highlights the reasons why the practice was legalized in the first place: to ensure those questionable measures would not have to be resorted to without transparency and oversight. True, the mother might not have qualified depending upon her mental fitness and whether she was terminal. However, as mentioned in the previous chapter, the intended purpose of Oregon model is not merely to end the patient’s suffering, but to give the patient a choice at the end of life to end their

8 It is similarly possible that family could coercively tell a patient “We want you around a few more days”, making the patient a prisoner of their unwillingness to let go. While this can be equally coercive and should also be guarded against, at least the effect is less final and the patient can at a later time decide differently. 9 Assisted dying of this sort borders on non-voluntary, and has been recognized as legal in the Netherlands provided there is sufficient attestation and continued corroboration of the patient’s desire to die should a certain point of impairment be reached; however, such advanced directives do not bind physicians to act on them, and are rarely adhered to (de Boer, Dröes, Jonker, Eefsting, & Hertogh, 2011).

53 own suffering. If that choice is not made by the patient, actively, intentionally, and reflectively, then the law has not been followed. The safeguards currently in place do not adequately protect against others helping a patient ingest the medication without confirming at that moment that they possess sufficient mental awareness and that taking the medication and dying as a result is what they want.

While there is also the possibility of a family member or close associate feeding the medication to the patient secretly and against their will (as in, they have capacity and have chosen to not take the medication for now), which would constitute murder, hopefully that would never happen in actual practice. Nevertheless, given the current state of the law it would be neither easily detectible nor easily prevented.

Lack of Medical Presence at the End of Life

“[T]hirty-one of fifty-five [hospices programs surveyed in Oregon]… have stated prohibitions against staff presence. Eleven permit it, and twelve have no statement.”

(Campbell & Cox, 2010)

“By law, my aunt’s doctor couldn’t be present…”10 (Van Zandt, 2016)

The above situations could easily be prevented by having the prescribing physician or another health care provider present when the patient chooses to ingest the medication; however, this rarely happens. For example, in those cases reported in

Oregon in 2016, the prescribing physician was only present in 11% of the time, and another health care provider (such as a hospice nurse) was known to be present only an

10 This is an op-ed by a patient’s niece reporting a case from California. The California law does not forbid physician presence, nor does any state law; however, it does allow health care organizations to forbid their staff from being present.

54 additional 11% of the time. (Oregon Public Health Division, 2016) That leaves 78% of cases in which the physician did not know whether any health care provider was present.

There are three reasons that someone should be present at the end of life. The first was covered earlier, the need to assess the rationality and voluntariness of the patient’s final actions. Second, the physician or other health-care provider can give support at a difficult time. While the families of those who chose assisted dying in

Oregon have statistically had an easier time with the death than those who die naturally,

(Smith et al., 2011) a known face, one who has become familiar to the patient and family during the course of the illness and recent days, can still be a source of additional comfort. Also, while many patients died within thirty minutes of ingesting the medication, others took several hours, occasionally much longer. (Oregon Public Health

Division, 2016) During this time the family may sit vigil, and having a source of comfort there could be appreciated. Though some families may choose to sit vigil alone, the option to have the health care provider present or at least nearby and available should still be presented.

Now these two roles, assessing rationality/voluntariness and offering comfort to the family, do fall under the purview of care-giving, but that does not mean that only a health-care provider can offer them. Counselors and volunteers from organizations such as Compassion and Choices may become close with the patient and family, and fulfill the important aspects of these roles. The documentary “How to Die in Oregon” shows such a counselor being the one to confirm the patient’s capacity and intention in taking the medication immediately prior to ingestion. (Richardson, 2011) Before 2010, the post- death surveys the physicians submitted to the Oregon Health Department would allow

55 inclusion of information from third parties regarding the death of the individuals, and so some of the information from 1997-2009 numbers reported derives from second-hand reports from such volunteers. (Oregon Public Health Division, 2016) It would be helpful to know in how many cases the prescribing physician knew of such non-family/friend third parties being present at the deaths of patients, but the forms only note whether the physician or another health care provider was present.

However, the third reason a health care provider should be present at the ingestion of lethal medication is that occasionally, complications have arisen. In roughly 3% of

Oregon cases, the patient has regurgitated some of the medication, reducing the possibility that a lethal dose was ingested. (Oregon Public Health Division, 2016)

Seizures and one other unspecified complication have occurred in Washington,

(Washington State Department of Health, 2015) and in six other cases, the patient subsequently woke up. (Oregon Public Health Division, 2016) A health care professional on hand can respond appropriately to any complications that arise and reassure the family regarding whether a sufficient dose was ingested.11

When the original Oregon law was passed, it allowed health care providers such as hospitals and hospice organizations to prevent their employees from participating in the process as part of their duties (though they could theoretically contract with the patient outside of that organization). Participating was defined as taking one of the official roles of the act, namely being the prescribing physician, or performing a consultation as a second physician, psychiatrist, or psychologist (ORS 127.885 §4.01-5d).

11 However, if the patient has not ingested a sufficient amount, the physician is not allowed to help them receive the medication by injecting it or other means, and so would play a purely supportive role. This differs from the Netherlands, where a physician and patient can agree to that option after the patient ingests the medication.

The Washington law held the same protection (RCW 70.245.190 - 2d), and other states have followed suit. However, institutional policies in both states showed that 56%

(Oregon) and 78% (Washington) of hospice program employees were not allowed to even be present when the patient chose to ingest the medication (in many cases, but not all, the institution had also forbidden the employees’ participation per the law).

(Campbell & Black, 2014; Campbell & Cox, 2012) Reflecting this move away from presence at death, the new California law explicitly included merely being present at the time of ingestion as “participating” in the law and thus able to be restricted by health care employers (HSC 1.85.443.15-f).

Yet the initial proposal for the practice argued strongly against any requirement, at the law or policy level, that requires persons to not be present at the patient’s administration and death, lest the opportunity for “a rich and meaningful goodbye between family members, health care providers, and the patient” be lost. (T. Quill et al.,

1992)

Abandonment is a central issue for both sides of the debate over assisted dying.

Opponents say that we should not “abandon” patients to an easy death, but instead should aggressively palliate their symptoms and compassionately respond to their suffering.

Emanuel details seven steps of increasing attention and intervention to initiate following a request for assisted dying, and further states it would be a “rare patient” who still maintained their request after all seven; even then, the physician should still decline because it is “not justified by the principle of nonintrusion or by the obligation to relieve suffering”. (L. L. Emanuel, 1998) In this concept physicians must walk the journey with

57 the patient and always be there for them, rather than just giving lethal pills and considering the matter settled.

Proponents of assisted dying such as Quill and Cassel have also held nonabandonment to be a central value of modern physicians (T. E. Quill & Cassel, 2004), and the Dutch argument for allowing assisted dying hinges on the doctor’s duty to not abandon patients to continued suffering when there is an available medical response that would end that suffering, with the idea that merely omitting treatment would be tantamount to “abandoning a patient to his fate” (Sleeboom, 2003), a position echoed by many physicians from Oregon interviewed regarding their experiences with responding to such requests. (Dobscha et al., 2004) The idea of being present with the patient throughout the journey to death is still there, but abandonment takes on a new meaning as a justification for seeking death as a means to end the suffering.

This applies to others besides doctors: nurses, social workers, spiritual counselors or other health care professionals who do not have an official responsibility under the law and often get close to the patient and families, are among those who can be caught in the middle. (Miller et al., 2004) Upon a request for her to be present near the end of the patient’s life, one Oregon social worker had to make sure the family knew she would not be able to be present during ingestion; another social worker noted that sometimes his actions in supporting the patient and family before and during the assisted suicide (such as being present at the time of ingestion) might be not be in strict accordance with his institution’s policies, but he proceeded anyway because it was good social work. (Norton

& Miller, 2012) The 1992 proposal of clinical criteria for assisted suicide had this to say on the issue:

“If the patient and the physician agree that there are no acceptable

alternatives and that all the required conditions have been met, the lethal

medication should ideally be taken in the physician’s presence. Unless the

patient specifically requests it, he or she should not be left alone at the

time of death. In addition to the personal physician, other health care

providers and family members should be encouraged to be present, as the

patient wishes. It is of the utmost importance not to abandon the patient at

this critical moment.” (T. Quill et al., 1992)

Unfortunately, this approach has not achieved legal recognition or force within the

Oregon Model. While professional guidelines for prescribing physicians do recommend their presence, or at least that of another health professional (Haley & Lee, 2008), in 2016 in Oregon prescribing physicians were not present and did not know of another health care provider’s presence in over 75% of cases. (Oregon Public Health Division, 2016)

This is not to say that patients who have a desire for privacy should not have that desire respected; some patients may prefer only family present, or even to be alone, and such wishes should be respected (as much as possible, provided a third party can assess the patient’s capacity and voluntariness close to the intended time of administration).

However, in the absence of such a request, allowing patients to have assisted dying and not allowing health care workers to be present seems to leave patients abandoned both in the sense of providing death rather than continuing to work with the patient in favor of palliation, and in the sense of letting the physician-patient relationship dwindle to one of professional absence.

Distortion of the Physician-Patient Relationship

“If I get rebuffed by one doctor, I can go to another…” (Claiborne, 1998)

A patient with a grave illness might reasonably believe that they have less than six months to live and prefer access to assisted dying in the near future. If they are told by a physician that they do not qualify for assisted dying, or otherwise refused a lethal prescription, they may attempt to find another doctor who is more willing to work with them to gain access to the medication. A patient whose life expectancy is longer than six months might “shop around” looking for a physician who is willing to take a more pessimistic view of their illness’s progression and writes the prescription. On the other hand, a physician may well refuse because they are motivated by a subconscious bias against the option of assisted dying and prefer the patient to make the most of their remaining life rather than end it earlier, even if the patient qualifies—and as we saw in the last chapter, physicians are often overly optimistic when predicting how long a patient has left.

Every patient who receives any medical information, recommendations, or options from a physician has the right to a second opinion from a different physician.

This right is especially important when it comes to medical options that retain some controversy, which might cause a doctor to deem a patient unqualified based upon (often subconscious) bias against the possibility that the patient chooses the option the doctor deems inappropriate. And in any case, some physicians will diagnose a patient as qualifying for assisted dying but will conscientiously object to writing such a prescription themselves. That was the context of the quotation above, that qualified patients should

60 not be denied access merely because their physician happens to object to the practice.

Such patients need to be seen by another doctor to receive a prescription.

Seeing a patient for the first time as the potential prescribing physician puts different stressors on the doctor. Individual physicians have noted that not knowing the patient, her values, history, motives, family life, disease progression, etc., makes it harder to evaluate her thinking and decision-making, as well as more difficult emotionally to consider fulfilling the request. (Dobscha et al., 2004) On the other hand, knowing that one or more doctors had turned down the request can make a physician feel a need not to disappoint or abandon the patient by refusing the request. (Dobscha et al., 2004)

A physician who has a certain rapport and relationship with a patient may have the insight and comfort after weeks/months/years of assessment to suggest various interventions such as pain control or a trial of anti-depressants, or a palliative or social work consultation, as a significant minority of physicians did in the first years of legal assisted death in Oregon (L Ganzini et al., 2000a). Conversely, not having that history and relationship and dealing with a patient who is focused on getting the prescription limits the insight a physician has to their medical and general situation, and thus reduces the options a physician would consider. Some physicians may respond by being overly cautious, wanting additional information or more stringent assessments before making a decision, but others may feel the need to accede to a request without subjecting the patient to any more hoop-jumping. Patient care becomes less about assessing and improving the patient’s overall well-being and more about ensuring they qualify for the lethal medication, and the doctor is at risk of becoming a mere rubber-stamper to a contentious practice. Nothing should stop a qualified patient from receiving a

61 prescription from a willing physician, but the level of concern and quality of care involved in the physician-patient interaction should not diminish because of the nature of the patient’s illness, request, and lack of a preexisting relationship.

If patients are interacting with physicians for the sole purpose of obtaining lethal medication, the notion of a physician-patient relationship built around the cooperative seeking of health is reduced to its bare bones. Patients know what they want; they just need a physician’s authorization to get it. Of all the models of physician-patient interaction, this is known as the “informative” (E. J. Emanuel & Emanuel, 1992) or

“supplier-and-consumer” (Arney & Lewin, 2013) model. In part driven by greater information transparency and availability (Johnson & Ramaprasad, 2000), as well as direct-to-consumer advertising (Arney & Lewin, 2013), such an approach leaves any moral connection between the physician and the patient at the door.The Oregon Model ascribes only a small set of responsibilities to a physician, without regard for other actions the physician should be taking based on their professional duty to help secure the patient’s welfare. As mentioned in the last chapter, the patient’s autonomy is foundational to the law while the physician’s duties as caregivers are scarcely referred to.

No treatment relationship needs to be present, nor indeed any potential for such a relationship, when considering assisted dying. The physician is no longer seen as working cooperatively and engagingly with the patient for the latter’s health and well- being, but merely offering various services the patient/consumer may choose from. This brings us to the next problem with the Oregon Model: that self-chosen death is offered on equal footing with other options.

One Option of Many

“Where medically significant alternatives for care or treatment exist, or when the patient requests information concerning medical alternatives, the patient has the right to such information.” (VSA 18.42 § 1852.a-4)

Unlike most other laws allowing assisted dying, the Oregon Model was designed, publicized, and popularized as a patient’s rights issue. In the Netherlands, Belgium, and

Luxembourg, in Japan, Colombia, Uruguay, Quebec, and now all of Canada, the idea has always been empowering a physician to relieve suffering. In Switzerland, the original law was not framed with patients in mind, but rather other potential suicides that might be thought rational or appropriate, such as matters of honor or romance. (Hurst & Mauron,

2003) Thus, unlike all countries with legalized assisted dying except Switzerland,

Oregon puts the patients in charge of everything: they keep the medication where they will, and once they have it they can decide every day if they want to die, and not have to ask for anyone else’s permission or assistance (unless their condition has deteriorated to the point of needing help fetching or preparing the medication, of course). This has led to a lawsuit in Vermont, where a separate law noted above requires all options to be presented to a patient; thus physicians in the state argue that the combination of laws forces them “to counsel their patients for physician-assisted suicide” (“Vermont Alliance for Ethical Health Care v Hoser,” 2016). In principle, a patient with a terminal illness can die as soon as they get the prescription, even if they are still able to walk, talk, laugh, entertain family and friends, and in other important ways enjoy what makes their life worth living to them. (In practice, this seems to be understandably rare if it has ever occurred.)

In this way, the Oregon and Swiss practices stand apart, in that they allow death to be, under certain circumstances, just as valid and acceptable a choice as life, as opposed to a last resort when life only contains unbearable suffering. This is in keeping with the idea of a permissive society, insofar as neither the patient’s death itself nor the legal mechanism allowing it cause harm to other parties. But from the view of health care, this also puts the moral standing of a doctor enabling death on equal footing with a doctor enabling health, or palliating symptoms. This contrasts markedly with forms of assisted dying designed solely to address extant suffering, in which all other attempts to help the patient’s health and life goals have been deemed futile or overly burdensome, and so physicians are forced to undertake the one remaining option to provide relief. As noted earlier, many physicians may have such a “last resort” view, and in current practice it may make little difference as the six month window diminishes the quality and quantity of life the patient may forfeit.

Too Long to Live

“[A] woman in her mid-fifties with severe heart disease ... requested assisted suicide from her cardiologist, despite having little discomfort and good mobility. She was referred to another doctor, who in turn referred her to a physician willing to provide assisted suicide. That doctor determined that the woman had more than six months to live, according to his best estimate. Therefore, she was eventually dismissed as ineligible.

Rather than inquire further into possible causes of [her] suicidal despair, the physician apparently considered ... his responsibility ended .... [H]e told her to go back and make

64 yet another appointment with her original physician and dismissed her. She killed herself the next day.” (Hamilton, 2004)

The Oregon Model is unique among approaches to assisted dying in that it requires the patient be terminal in the specific sense of having only so much estimated time left. Other laws speak of “unbearable and unrelievable suffering” (Netherlands) and

“advanced state of irreversible decline of capability” (Canada). The flexibility of definitions allows individual doctors to apply the standards with a certain amount of contextual discretion, which can give a beneficial flexibility but can also bring up issues of abuse. (H Hendin, Rutenfrans, & Zylicz, 1997) Whether physicians can accurately predict a patient’s expected time left is a problematic question as well, but as noted above and in chapter 2, the same criterion applies to hospice and has been used without significant disagreement in that regard for decades, it shall be acceptable as sufficiently practicable to have as a legal standard.

However, the lack of flexibility necessarily results in some patients who would like to make use of assisted dying not qualifying for it. Patients with debilitating illnesses like multiple sclerosis may wish for assisted death significantly before their disease would kill them, and other illnesses like Parkinson’s can cause immense suffering without being terminal. Initial proposed clinical criteria for assisted dying in the US did not require the disease be “imminently terminal”, but rather that it was incurable and causing “severe, unrelenting suffering”. (T. Quill et al., 1992) Such patients would potentially have access to assisted dying in every other jurisdiction, but not in the US.

Denying a suffering patient access to assisted dying can have unfortunate results, as demonstrated by the story above and who knows how many others.12 While some hold that such a person should always be referred for psychiatric evaluation for their suicidal ideations (Herbert Hendin & Foley, 2008), the argument could equally be made that the

Oregon model is too narrowly applied when compared with others, in that persons falling outside it are seeking the same comfort and assistance and being turned down. These two arguments are not incompatible—that is, one could hold that psychiatric evaluation for such individuals farther from death should occur, but they should not be denied access to assisted dying if such evaluation does not reveal a mental illness at the root of the request.

Furthermore, those patients who are turned down and do take matters into their own hands lose certain protections in the law, such as their deaths not counting as suicides for legal purposes, which could result in forfeiture of life insurance pay outs and other problems. However, in at least some cases these protections are justified from an actuarial perspective specifically because the patient is already viewed as dying soon, so it would be cruel to ask them to endure unnecessary days or weeks of suffering merely to secure various benefits of a “natural” death: a person forfeiting an estimated 10 days of life has a much better claim to being entitled to a life insurance pay out than a person who might live 10 years or more. As noted earlier, attempting to include such patients outside of the six month window under the umbrella of the practice is problematic.

12 Patients living in states that do not allow assisted dying and are too frail to relocate to another may also choose suicide by other means, one reason supporters of the practice argue such laws should be passed. (Greene, 2016)

Limited Quality Control

“At what will typically be an emotionally difficult time for the patient and family, unfamiliar third- party consultants, evaluators, and witnesses must intrude into the physician-patient relationship. Patients and their families will often quite reasonably view the procedures as a profound invasion of their privacy at a point when time is short and privacy is especially important. We feel, nevertheless, that such procedures are necessary in order to ensure that in less-than-ideal relationships and conditions, misuse or abuse of the practice of physician-assisted suicide does not occur.” (Baron,

Bergstresser, Brock, Cole, Dorfman, Johnson, Schnipper, Vorenberg, & Wanzer, 1996)

There are several protections built into the Oregon model. A second physician is needed to examine the patient and confirm their diagnosis and capacity. A mental evaluation is recommended if either physician has doubts of capacity. Written forms are required as are witnesses legally attesting to the wishes of the patient. The prescribing doctor has to cover certain key parts of informing the patient, such as alternatives and advising the patient to inform their next of kin of their plans. All these help to ensure and document that the patient is making an informed choice.

Yet while the signatures of witnesses can provide evidence that such a request was made by the patient, they cannot speak to the patient’s process of deliberation, nor the conversations they had with the physician, nor any influence family input or other influences had on their decision. They may only have an untested presumption of a patient’s mental capacity. A witness can be an intimate of a patient, or she can be a stranger who is in the patient’s presence for only a few moments, to see whether the patient assents to certain statements made by others. In a proposed model for state acts

67 allowing assisted suicide, those individuals who signed forms as witnesses had the right to question both the physician and patient regarding the patient’s understanding of his medical situation, a discussion that would be recorded or summarized and kept with the patient’s medical records (Baron, Bergstresser, Brock, Cole, Dorfman, Johnson,

Schnipper, Vorenberg, & Wanzer, 1996); this provision has not made it into any state law. Furthermore, physicians are not empowered to check the estate planning documents to insure that at least one witness does not stand to receive an inheritance, as the law stipulates. (Beltramo, 2017) Requiring witness signatures is an important protection against potential abuse, but it is not a guarantee of the patient making an informed, uncoerced choice.

In the same way, having an optional mental evaluation is a positive attempt at ensuring the patient’s true will is behind the decision, but it is rarely used; only 5% of cases from Oregon and 4% of cases from Washington included such a consultation.

(Oregon Public Health Division, 2016; Washington State Department of Health, 2016)

There are good arguments for not requiring psychiatrists and psychologists to be the

“gatekeepers” of assisted dying (M. Sullivan et al., 1998), and a terminal diagnosis and approaching death are not usually associated with any mental health issues other than an understandable temporary depression following the initial news. (Gurung et al., 2016;

Lichtenthal et al., 2009) Nevertheless at least one study indicates that depression and requests for assisted dying are associated, and that patients with clinical depression have gained access to lethal medication under the law; the authors of the study expressed concern regarding whether current protections were adequate regarding patients’ mental status (L. Ganzini, Goy, & Dobscha, 2008). A doctor may not be able to recognize

68 depression if they do not know the patient well; even psychiatrists themselves are not confident that a single meeting would be enough to properly evaluate a patient for depression or other mental conditions that might influence such a decision (Linda

Ganzini, Fenn, Lee, Heintz, & Bloom, 1996). Depression is notoriously difficult to diagnose in people with serious illness, but it should be noted that a diagnosis of depression does not automatically equate with mental incapacity.

There are several ways this could be addressed: institutions could require non- binding psych evaluations even though the law does not, or doctors should ensure patients undergo the most appropriate standard mental test, such as the PHQ-9, rather than rely solely on their own subjective assessment in considering whether a consultation is necessary (Haley & Lee, 2008). Vermont’s law has the flexibility of allowing clinical social workers to also evaluate the patient’s capacity and impairment (VSA 18.113 §

5283-a 8), which highlights the interplay between living conditions, relationships, and mental health. While it is true that most patients who ask for assisted death are enrolled in hospice, and as such will receive upon entry a complete psychosocial workup (Code of

Federal Regulations, n.d.), the non-negligible minority who do not choose to enroll in hospice have no such protection working for them.

Finally, there is no retroactive assessment of the appropriateness of the doctor’s actions by any peers. This might seem redundant, as another doctor has already signed off on the patient’s being medically and mentally qualified for the practice, but that merely indicates that there is no barrier to the patient receiving the lethal medication; it does not allow evaluation of the physician’s response to the particulars of a patient’s case. Retroactive assessment would be able to consider or ensure answers to issues I

69 have discussed earlier: Did the physician have reason for not being present at the patient’s time of ingestion (patient request for privacy, pressing engagements, etc.)? Did the patient know of a third party who would be present and ensure that the patient was acting voluntarily in ingesting the medication? If the physician was not the one the patient made the initial request of, did the prescribing physician reach out to the former doctor to discuss the patient’s situation and the reason for that doctor’s refusal of the request? What palliative measures were in place to ensure that the patient could enjoy and engage life as much as possible, so that death would not be the most attractive option? Why did the physician not think a psych consultation was necessary, and were any objective tests of the patient’s mental status administered to corroborate the physician’s view? All these are questions that could be asked by a review committee with access to the patient’s files and write-ups; knowing that such an examination would happen could make for a higher standard of evaluation and care of patients requesting assisted dying.

Having such retrospective oversight would also significantly increase the number of persons who are familiar with each case. This would encourage more of a dialogue about appropriate professional responses to individual cases in ways that could help shape the practice for the better. The individual physician whose cases are reviewed would benefit from scrutiny of their own practices, improving the quality of the care they render to their patients, but this quality improvement could spread statewide, with physicians learning important lessons from the experiences of others in their state, provided such analysis and recommendations are appropriately publicized. This brings us to the last problem with the Oregon Model as currently implemented.

Little Continuing Guidance

“Since the government-sanctioned [studies and reports] are primarily numerical and categorical, they do not examine the interactions between physicians, patients, and families that determines [sic] the decision for euthanasia. We need to look elsewhere for a fuller picture.” (H Hendin et al., 1997) [Comment originally made regarding the Dutch studies of the 1990s]

One of the important reasons for legalizing assisted dying in some form has been that the practice will also happen illegally, and there is significant evidence to support that euthanasia and assisted suicide in the medical context do occur despite being illegal—before any state legalized assisted dying of any form, a nationwide survey found

4.7% of physicians had given a patient a lethal injection. (Meier et al., 1998) At least with a legal practice in place, with agreed upon standards, active research, and continued public conversation, physicians can draw guidance and support from the required and recommend procedures in the law and public guidelines. The law’s requirements have been helpful in insuring a greater degree of scrutiny and protection compared to the practice undertaken illegally (E. J. Emanuel, Daniels, Fairclough, & Clarridge, 1998), and the legal requirements have been supplemented by a task force’s more comprehensive recommendations for doctors and other parties (Haley & Lee, 2008).

However, support from professional organizations has been less than helpful in guiding the practice. Nationally, there are several organizations that support assisted dying, including the American Medical Student Association, the American Public Health

Association, the American Medical Women’s Association, and the American College of

Legal Medicine (Compassion and Choices, n.d.). Others, such as the American

Academy of Hospice and Palliative Medicine (Compassion and Choices, n.d.) and the

American Psychological Association (American Psychological Association, n.d.), are neutral or take no position. However, with the exception of the American Psychological

Association, these positions appear to be primarily a political statement: they support the passage of laws or the legal action undertaken in accordance with such laws, but do not encourage proactive engagement with the practical issues in legal assisted dying, such as the need for research, professional training, multidisciplinary evaluation, etc. (American

Psychological Association, n.d.) The American Medical Association (American Medical

Association, 1993) and American College of Physicians (Snyder & Sulmasy, 2001) remain opposed.

What about the professional organizations in the states that allow the practice?

The Oregon Medical Association adopted a stance of neutrality to the proposed law in

1994, but subsequently supported that law’s repeal in 1997 (Haley & Lee, 2008). Rather than work within the framework of the law to train physicians regarding the issues they may face in following up on a patient’s request for assisted dying, or even taking a stance of studied neutrality that has been recommended by proponents of the practice (T. E.

Quill & Cassel, 2003), all physician organizations in the US have taken stances against the practice. The Oregon and Washington state medical associations, and the District of

Columbia Medical Society, do not take a clear public position on the issue on their websites. 13 (Nor does the website of the Montana Medical Association, which allows assisted dying but does not follow the Oregon Model.) The Vermont Medical Society is

13 Though in a 2016 press release, the OMA did call for more study and indicated it would maintain a neutral stance. (Fore, 2016)

72 against it (Vermont Medical Society, 2003), the Colorado Medical Society is in favor of the law (Colorado Medical Society, 2016), and the California Medical Association is officially neutral. (“California Medical Association removes opposition to physician aid in dying bill,” 2015)

This neutral standpoint merely allows physicians to follow their conscience regarding requests. It does not attempt to teach them how to handle them, provides no resources for consultation and referral, nor training for consultation and taking over difficult cases at the request of another physician. It is unclear what educational resources are made available to physicians who want to prepare themselves for patient requests. The lack of an integrated and transparent approach to helping physicians learn from each other’s cases hinders any collective professional learning and improvement regarding the provision of care in response to and concurrent with a patient’s request for assisted death. If law is the lowest standard for morality, than studied neutrality is the lowest standard of guidance.

Physicians do have other resources available to them besides professional organizations; Compassion and Choices is such an organization that provides resources to patients considering their end-of-life options, and with regard to assisted dying in particular can function in some ways similar to Dignitas, a Swiss organization of doctors that responds to individuals requested assisted dying (Ziegler & Bosshard, 2007). The resources and assistance Compassion and Choices provide can be invaluable to some patients, families, and doctors. Yet by operating outside of the professional organizations, reliance only on such lay organizations eliminates the input of professionals who are not members of such organizations, because of conscience,

73 convenience, or other reasons. The critical eye and skeptical stance of opponents of the law is removed from evaluating the practice of assisted dying.

In addition to such information, resources, and training not being available to doctors, the public at large is not privy to various details regarding the practice. In

Oregon and Washington especially, where voters were the force behind the laws’ creation, the public is limited to statistical details from the annual reports and the occasional media splash made by cases that are held to be particularly controversial or exemplary. While such cases do catch the public’s attention and enliven the debate (and, in the case of Brittany Maynard, can be a significant impetus regarding the passage of new laws), they rely upon voluntary public disclosure from various sources for their information. How that information is framed can change public perception of it; indeed, the same case was presented as a success story by the law’s supporters and an indictment of the practice by its critics. (Herbert Hendin & Foley, 2008)

The vast majority of cases will remain undisclosed in any fashion, so the bulk of the actual practice is hidden from public scrutiny of any form beyond the annual reports’ statistical findings. Numbers can give insights into large-scale trends over time, and the behaviors of larger cohorts of individuals categorized by gender, race, or socioeconomic class. Yet they cannot give an accurate picture to the profession or the public about what a typical case is, nor how professionals do and should respond to borderline cases or ethical dilemmas that may arise. Continuing guidance is needed for physicians to improve the care of their patients, and it needs to be concrete, based on real cases, and specific to how physicians should shape their responses to their patients’ potential requests.

Chapter 4: Overview of the Practices and Solutions from Elsewhere

Introduction:

This chapter reviews various practices of physician-assisted death in other countries, with particular emphasis on how these practices differ from PAD in the US.

The legal distinctiveness of each country’s law or court decision can give insight into the justification for allowing assisted death, but more weight will be given to how the practice itself is realized. The countries of the Benelux region have led the charge here, with the Netherlands having some legal support for the practice for over 40 years. Some areas passed laws specifically to allow the practice in the past 20 years (the Netherlands,

Belgium, Luxembourg, Quebec, Northern Territories of Australia). Others had national or regional court cases that gave recognition to them (Colombia, Japan, Canada), or had laws on the books from decades earlier that addressed the practice directly or indirectly

(Switzerland, Uruguay).

This chapter is not intended to completely overview the system of each nation; rather it focuses on certain features of each practice that are potentially relevant to the problems in the Oregon model revealed in the last chapter. How these features can be applied to the Oregon model directly to address those problems will be covered in

Chapter 5.

The Netherlands:

The doctor-patient relationship in the Dutch health care system remains rather old-fashioned in the 21st century. Many persons in the Netherlands form a decades-long relationship with their primary doctor, which may even encompass the house calls that

75 have all but disappeared from American medicine, at least at the level of physicians.

Within such a relationship, the doctor felt all the more keenly not just the duty to provide for the health of the patient, but also the duty to ensure that he did not suffer. It was this special bond between doctors and patients that encouraged the doctors to plead with the legal system on behalf of their patients for permission to allow for the relief of suffering to trump the duty to not kill when a patient is in extremis. (Clark & Kimsma, 2004)

Suffering is perhaps the most noteworthy and morally significant aspect of the

Dutch approach to assisted dying. For a patient to qualify for euthanasia or physician- assisted suicide, the physician must be convinced that the patient is suffering to such an extent as to be unbearable, and in such a way as to be unrelievable by any reasonable treatment. (Parliament, 2001) Such patients are likely to be at the end of life, but need not be; if not, so much the worse, as they would have to endure that much more suffering for each additional day they live. It is only this extreme and enduring suffering that causes the Dutch to allow an exception to the general rule of the physician not intentionally killing a patient, when death seems to be the least bad alternative.

Since it is true that suffering does not itself have to be based on any physical symptoms, the law has allowed the assisted dying of those whose suffering is not

(directly) connected with a terminal or physically debilitating illness such as cancer or

ALS. Before the 2002 law was passed, the 1994 Chabot case revolved around a woman’s overwhelming and untreatable grief. (Cohen-Almagori, 2002) As understood in the

Netherlands, the concept of informed consent allows for advanced directives to be used in the case of individuals who go on to develop progressive dementia or other mentally debilitating conditions, though physicians are not required to honor them and a majority

76 do not (M. L. Rurup et al., 2005). More recently in nearby Belgium the same criteria for assisted dying have led to cases where the underlying cause and nature of the suffering

(physical or emotional) justifying euthanasia are quite controversial. These include deaf twins who are going blind (and so losing all autonomy and communication) but no somatic pain was present (Waterfield, 2013), a transgender man whose botched surgeries caused him immense suffering (Tom Mendelsohn, 2013), and a prisoner sentenced to life for whom prison life caused unbearable suffering—though the unnamed doctor pulled out of the last case before euthanizing him, several medical professionals agreed that he still qualified according to the law. (Blenkinsop, 2015)

While such cases are often controversial and opponents cite them as extensions of the law beyond its original scope, and evidence of a slippery slope, in fact all do fit the criteria of the letter of the law. Before 2001, court cases had only recognized the acceptability of euthanasia for adults, but the law allowed patients as young as 12 to legally request it, provided they had the consent of a parent if they were under 17.

(Pereira, 2011) The only extension of euthanasia in the Netherlands since the law came into effect has been a court case that allowed euthanasia infants suffering from horrible conditions without any significant chance of palliation or cure (Lindemann & Verkerk,

2008), a practice that remains extremely rare. A movement to allow those “weary of life”, or who believe their lives to be “completed”, to receive euthanasia has some support but does not fit within the current law based on suffering and has not been endorsed by the Royal Dutch Medical Association (M. Rurup, 2012), although new legislation may allow access in the near future. (Glanfield, 2016)

To ensure individual cases meet the professional and legal requirements, the patient requesting death must first be evaluated by an impartial consultant. In the first years of permitted euthanasia, physicians would “couple” with colleagues to be consultants on each other’s cases, a practice that was not uncommon in the 1990s. Such individuals might be members of the same practice, personal friends, arranged in a buddy system to consult for each other’s cases, consulting merely over the phone, or inadequately prepared/trained for assessing the patient’s condition and circumstances.

In response, the Royal Dutch Medical Academy initiated its own independent consultant group. SCEN physicians (“Support and Consultation on Euthanasia in the

Netherlands”) are trained particularly in the recognition and evaluation of suffering in such cases (Kimsma, 2012a). A physician must have practiced for at least five years before being considered. Three days of initial training are spread out over eight weeks, followed by meetings every three months to discuss cases and confer with colleagues.

Particular training areas include analysis of suffering, consideration of palliative care options and alternatives, assessment of depression and patient competency, and how to write a report that comprehensively describes the patient’s condition and the consultant’s reasoning for their decision.

Though no law or professional requirement mandates their involvement, SCEN physicians are used in over 80% of requests since the law came into effect. (Kimsma,

2012b) The evaluation of suffering (rather than pain or any individual symptom) is an existential task that does not have clear objective criteria, but necessarily involves a subjective quality to which these physicians are particularly sensitized. (Kimsma, 2012)

They are available in all regions of the Netherlands, and help ensure that the patient’s

78 request, the nature of the suffering, and the impossibility of alternatives are all considered by a professional sufficiently removed from the situation to consider them objectively but adequately trained to respond to the subjective elements underlying them.

Patients do not have the right to demand euthanasia from a doctor, and some doctors will not perform it on principle; in such cases a patient may turn to the End-of-

Life Clinic (Levenseindekliniek) for assistance, a group of professionals available throughout the country and dedicated to helping such patients with no one else to turn to.

This possibility negates the enduring physician-patient relationship from the interaction; to make up for that the End-of-Life Clinic employs teams consisting of a doctor and nurse to evaluate the patient. The doctor and nurse are each chosen following a patient’s request, to respond both to the geographical location and to the particular medical conditions causing the patient’s suffering (Snijdewind, Willems, Deliens, Onwuteaka-

Philipsen, & Chambaere, 2015). They will often see the patient multiple times, especially in complex and non-immediate cases such as those in which the underlying cause of suffering is psychiatric or dementia-related. They handle a large proportion of such cases as other physicians are often uncomfortable or unwilling to respond to requests from such patients.

Every doctor and nurse working at the clinic is trained for these situations, for like the SCEN physicians they are evaluating a patient’s medical condition and the nature and extent of suffering without a preexisting relationship. The End-of-Life Clinic will also contact the original doctor to ask for the reasons why the patient request was turned down, and if any relevant details about the patient or his condition come to light they will incorporate them into their evaluation. Unlike the perhaps more American approach of

79 securing a right to die for the patient, the clinic would prefer to help the patient’s original doctor perform the euthanasia if the patient qualifies for it, and its physicians only performs euthanasia when circumstances or rights of conscience prevent that.

This demonstrates an important distinction between American and Dutch assisted dying: the Dutch practice recognizes assisted dying specifically within a treatment relationship. The various court cases and public debates have almost exclusively been about physicians and the extent of their professional duty to relieve suffering, rather than patients and their autonomy to die on their own terms. The balance between duty and autonomy swings opposite the American practice, explaining why physicians in the

1980s and 1990s would sometimes initiate “life-ending acts without explicit request”, because their patients were suffering and physicians viewed informed consent as either impossible, difficult, or unnecessary. (van der Maas et al., 1991)

When the Dutch law passed in 2002, it made explicit that informed consent was required, and also made clear that all other treatment options to secure the patient’s well- being must be considered and rejected. Thus there is a treatment relationship present in the discussion, or at least the considered potential for one; physicians who ignore this and pursue assisted dying despite other options break the law and risk professional sanction.

There must be cooperation and alignment between the physician’s duty to relieve suffering and the patient’s autonomous informed choice, and the balance has shifted more toward the center than in decades past. The recent establishment and expansion of the

End-of-Life Clinic is perhaps a symptom the balance is continuing to shift more toward patient autonomy, but the language of the law ensures that such autonomy can only be

80 actualized within the context of a physician’s duty to relieve suffering, and only when all other acceptable options fail.

Since physicians were at the forefront of permitting assisted dying in the

Netherlands, it is no surprise that euthanasia as well as physician-assisted suicide is legal.

Assisted dying’s moral origins do not lie with the rights of individuals, but rather the responsibility of physicians to relieve suffering in extreme cases. Euthanasia is a medical act performed by a trained professional, with a particular kit available from a pharmacy containing very specific drugs chosen by the professional association chosen for their efficacy and humaneness, and accounts for over 90% of the assisted dying cases in the

Netherlands. (Regional Euthanasia Review Committees, 2015) This is possible not just because of the close relationships doctors and patients often have, but also because many patients generally prefer their physician to ensure their own peaceful death, rather than taking oral medication themselves; many if not most patients who choose euthanasia are physically capable of ingesting the medication without assistance, but prefer to trust the doctors instead. This is true despite a preference of many doctors for PAS over euthanasia, and proposals to only allow euthanasia when PAS is not feasible. (Griffiths,

2008)

When a patient and physician do agree on assisted suicide rather than euthanasia, the details are substantially similar: the doctor still makes an appointment with the patient for the date of the intended death, delivers the medication on that particular day, and ensures it is properly administered by watching the patient ingest it. If the patient chooses not to die that particular day, then the physician must take the medication away from the patient until another agreed upon date, rather than leaving it in the patient’s care

81 to use whenever he sees fit as is the case under Oregon-type laws; since the year the law came into effect the Dutch Royal Medical Association has viewed such actions as a failure of care and a danger to the patient and others. (Regional Euthanasia Review

Committees, 2002) And if a patient ingests the medication and becomes unconscious but does not die within a few hours, many doctors will then administer additional drugs themselves to hasten death, so that the patient’s death will be quickly assured; such cases are recorded separately.

Following the death of the patient, the attending and consulting physicians both submit reports to a regional review committee, composed of a physician, a lawyer, and an ethicist. These reports contain all relevant details regarding the case: the patient’s cause of suffering, what efforts were made to relieve it, why it could not be treated, what about that type of suffering was unbearable to the particular patient, the details of the request for euthanasia, any familial or social considerations, how the consultation went, and how the euthanasia was achieved. (Evaluating the performance of the euthanasia itself is why the review must be retrospective.) These specialists examine each case at length, have access to the medical records of the patient and can call upon either physician for additional information if needed. They are looking for adherence to the law, specifically that the patient was suffering unbearably and there was no other reasonable action for the doctor to take to provide relief. The actions of both physicians are considered in light of professional standards, with the possibility of being reported either to the medical board for professional misconduct or the public prosecutor if the misconduct borders on criminal. (Kimsma & Leeuwen, 2012)

To better ensure that these professional standards are widely known and cover the difficult cases of uncertain action, each year the review committees publish a report containing information gleaned from the past year’s cases. These include both aggregate statistical data as well as around twenty different individual cases that illustrated aspects of good or inadequate care on behalf of the physician, and if the care was inadequate, what steps should have been taken. This publication is available to all physicians in the

Netherlands but also to the public online, in Dutch and in English, free of charge. Thus a clear professional standard can be referenced, with guidance for individual cases that other physicians can use to inform their own actions.

Beyond the annual reports, every five years there is a national study on dying in the Netherlands, which includes not just euthanasia, but also other actions such as terminal sedation, withdrawal of life support, and high doses of morphine that hasten death. These provide a greater context for understanding what alternatives to euthanasia are present, and generally how Dutch individuals (choose to) die.

What we should learn:

o An enduring relationship between physician and patient is critical to the

practice. The vast majority of assisted dying cases are handled personally

by family doctors, and the enduring relationships ensure continuity and

quality of care until the end.

o In the absence of such a relationship, and in other complex cases,

physicians with training in the issues surrounding assisted dying should be

available and strongly recommended.

o Trained, independent consultants with experience and training in end-of-

life care should be available and the norm.

o Physicians should always be present when medication is administered.

o Detailed case write-ups should be submitted to a review committee.

o Professional guidelines and educational cases should be made public in

addition to statistics.

What we should avoid:

o Euthanasia – the Dutch have both universal health care and personal

family physicians. We do not have the health care system or doctor-patient

relationships to support such an empowerment of physicians.

o Extending the 6 month rule – this rule works well within the American

system and ties the option of assisted dying with the availability of hospice

services to palliate suffering. Assisted dying in America must always be

in the context of access to excellent palliative care; such palliative care

other than hospice is less available and not necessarily covered by

insurance.

o Subjective criteria that allow for continual “redefinition” – tying access to

assisted dying to the existential evaluation of suffering by physicians

without strong relationships with patients has led to court cases and public

outrage in the Netherlands, and would be that much more inflammatory in

America.

o Advanced directives – impossible without going beyond assisted suicide,

as the patient either would not initiate the death-causing action themselves

or would be mentally unfit to give consent.

o Groningen protocol that allows PAD for newborns – it undermines the

foundational importance of consent in American assisted dying.

o Weary of life (new bill being debated) – Being tired of life and having a

foreseeable death are separate conditions, and allowing assisted dying in

the latter case is a separate issue from the former, which has much greater

potential for coercion, abuse, and resultant mistrust.

Belgium:

The Belgian law is substantially similar to the Dutch law (Griffiths, 2008): it was passed around the same time, focuses on the unbearable and unrelievable suffering of the patient, and while it does not explicitly include PAS, both professional and legal consensuses have concluded that practice is covered by the law as well. (Lewy Guenter,

2011) There are some minor differences regarding outlying cases and implementation guidelines (advance directives needing to be updated every 5 years, existential suffering not qualifying, biennial rather than annual reports, etc.), but generally speaking the text of the two laws shows the parallel thinking of the lawmakers with regards to what qualifies as an understandable reason to allow for the exceptionalism of euthanasia.

One point of difference deserves mention: a one-month waiting period if the patient is not dying soon. On the one hand this can be seen simply as analogous to the 15

85 day waiting period in the Oregon model, subject to waiver only if it unduly burdens the patient. However, it implicitly recognizes that with patients who are not currently near death, there is time to move slowly, to consider the question at length, and to allow not only for greater reflection, but also more time for alternatives and interventions to ameliorate the reason for the request. To this end, in such cases a second consultation by either a psychiatrist or a specialist in the patient’s particular disorder is required.

(Griffiths, 2008)

In terms of the practical reality of euthanasia in Belgium, there are some important differences from the Dutch system. The Belgian law was not formed following decades of legal and professional deliberation, but after a public debate that was sparked by a 1997 recommendation of the Belgian Advisory Committee on Bioethics, and could take place given a transition from the anti-assisted dying Christian Democrats to a more permissive government of Liberals, Socialists, and Greens. (Lewy Guenter, 2011)

Nevertheless the issue was a polarizing one, publicly and professionally, and the passage of the law did not result in the widespread support euthanasia enjoys in the Netherlands; opposition along political and religious lines remains, but there are exceptions. Caritas

Flanders, a Catholic agency with over a thousand affiliated health care institutions, lobbied for the inclusion of a palliative care filter in the law, attempting to maximize the quality of patient care and minimize the number of patients choosing euthanasia; when the amendment was not passed, they recommended the guidelines to their own institutions, practically all of which have adopted them. (Lewy Guenter, 2011)

The integration of palliative care into the euthanasia process is a key aspect of the

Belgian practice. The law does not require any particular interventions or consultations,

86 but it does state that “all patients are entitled to benefit from palliative care at the end of their life.” (“The Belgian Act on Euthanasia of May, 28th 2002 (unofficial translation),”

2002) In that vein, the two consultation physician groups in Belgium that play a role similar to the Dutch SCEN organization are the Forum for End-of-Life Information

(LEIF) and Médecins EOL; these groups integrate special end-of-life training with an emphasis on palliative care to focus not merely on a request for euthanasia, but more explicitly on symptom management and care of the whole patient following a request.

These trained individuals assist with the majority of euthanasia cases in Belgium. (Van

Wesemael et al., 2009) There is also a similar program set up to train nurses in depth regarding end-of-life options, though nurses are not allowed to perform euthanasia or prescribe medication for PAS in Belgium. (Lewy Guenter, 2011) As in the Netherlands, studies in Belgium have shown that having a particular group of trained consultants available had several potential benefits for the physicians, and by extension patients.

(Cohen et al., 2014)

What we should learn:

o Assisted dying for those closer to death is distinct from those who are

farther away. As mentioned earlier, if the US ever wants to go beyond the

6 month rule, it should apply different standards to better safeguard

patients who have more time. (For example, since such patients could not

be enrolled in hospice, palliative care should be heavily involved, though

how to ensure this in a fair manner in light of private insurance variations

is difficult and unclear.)

o Organizations should feel free to apply their own higher standards to

safeguard their patients.14

o Palliative care is highly relevant when responding to requests for assisted

dying, as such individuals may not be making well-formed requests or

their desire to die may be ameliorated by other interventions.

o Trained consultants should have a strong background in palliative care.

What we should avoid:

o Directly integrating PAD with palliative care providers would not work in

America. Palliative care needs to be available and strongly encouraged for

patients considering assisted dying, but as noted in chapter 3, the Oregon

model already has an issue with PAD being an option of equal footing,

and hospice organizations are keeping it at arm’s length.

Canada:

Canada legalized assisted dying thanks to a Supreme Court decision in 2015, but unlike other court rulings, the justices ruled that the legalization would be suspended for a year (later extended to 16 months) so that the legislature would have time to craft a proper law to oversee and regulate the practice. Thus, unlike similar court decisions in the Netherlands, Colombia, Japan, and Montana, there was a clock ticking away until unregulated assisted dying was available, and a year of reflection and debate followed.

14 While unreasonable standards could arguably block access altogether at a given institution, unlike the Dutch and Belgian systems American health care organizations are already empowered by the Oregon Model to forbid access to assisted dying for their patients by denying their employees the ability to participate, as noted in chapter 3.

The Canadian Medical Association (CMA) had supported the idea of medical aid-in- dying since 2014 (Canadian Medical Association, 2014), and following the court decision it surveyed both its members and the public for their opinions (Canadian Medical

Association, 2015), so that the newly legal practice would have a realistic and pragmatic response based on the views of affected individuals. It also made recommendations to

Canada’s parliament on the shape of the law and the criteria of those who should qualify for assisted dying. (Canadian Medical Association, n.d., 2015)

The law that the legislature passed in 2016 followed many of these recommendations. It is similar to the Benelux approach in allowing both euthanasia and assisted suicide,15 as well as recognizing intolerable suffering as a necessary criterion. It also incorporated the Oregon idea that the person’s death should be reasonably foreseeable--though without an explicit timeline, giving more flexibility to the clinician in making a judgment.16

The CMA has taken a proactive response to the availability of medical aid-in- dying (MAiD). Soon after the law was passed it released educational modules and classes on its website to ensure that practitioners would be able to understand both the workings of the law, and the standards of practice their own profession expects them to adhere to. Furthermore, doctors and nurse practitioners with experience in assessing patient requests or providing MAiD to patients have formed their own organization, the

Canadian Association of MAiD Assessors and Providers (CAMAP), to provide professional support and guidance in real time to each other. They have a listserv,

15 And just like the Netherlands, euthanasia is significantly preferred, comprising over 90% of cases. 16 The foreseeable death criterion is actually contrary to the Supreme Court’s ruling, which only required the patient to be suffering due to a medical condition that caused them extreme pain/difficulty or serious decline in capacity. A new court case, Lamb v Canada, is challenging its inclusion.

89 newsletter, and annual meetings to discuss different questions about particulars of the process, such as organizational support, regional and governmental oversight, troublesome cases, and billing procedures.

One of the troubles facing members of CAMAP is that the law has not yet been completely implemented. The 2016 law empowered the Ministry of Health to set forth reporting and related oversight mechanisms it deems appropriate. As of May 2017, no such requirements are in place, and while certain questions will be debated as drafts are released to the public in the Canadian Gazette, no system is likely to be implemented until 2018 at the earliest (Tomkins, 2017). But this absence at the federal level does not reflect the situation at the provincial level.

Quebec anticipated the Canadian Supreme Court’s Carter decision by legalizing assisted dying in 2014. (An Act respecting end-of-life care, 2014) The Quebec law has some differences from current Canadian law, requiring the patient be at the “end of life” rather than having a reasonably foreseeable death, and not explicitly allowing assisted suicide as an option, but in many other ways it served as a model for the resulting

Canadian legislation. Concerning issues of practice and protection, the Quebec law took the novel step of requiring local health organizations to set up committees to review case reports yearly. This law is arguably still in effect, as the provinces of Canada have the right to regulate legalized assisted dying as they see fit within the bounds set by the federal law. For example, in British Colombia, provincial law requires that the patient assessment be witnessed by a regulatory individual, and that the prescriber of the medication must be present during self-administration and stay until death is determined.

(“Medical Assistance in Dying,” n.d.)

With a year of practice to draw from, the provinces have each come up with different approaches that comply with the federal legislation, exploring the options that are possible in their respective conditions. For example, in Manitoba a team of a doctor, nurse, and social worker performs each assessment. (Wiebe, 2017) Vancouver Island in

British Columbia requires its providers of MAiD to first be certified, originally requiring them to visit the Netherlands before developing its own training program. (Jesse A

Pewarchuk, 2017) Alberta releases data on its requests and responses on its website, with weekly updates. (Walsh, 2017) Whether a coroner must investigate the death varies from province to province, as does the official cause of death: Nova Scotia lists “lethal injection”, Saskatchewan “suicide”, and Ontario formerly “suicide” but now the underlying condition, while others may list some combination of them. (Chantal Perrot,

2017; Yoshida, 2017) There is a growing effort by CAMAP to standardize the practice across province lines, with regional practitioners working to create clinical practice guidelines as well as similar approaches to assessment, patient care, and reporting forms.

What we should learn:

o Professional organizations should reformulate their positions in response

to the views of their members and the public when laws are changed. If

membership is significantly divided on the issue, it is appropriate to

embrace that diversity and focus on the practical issues that may arise in

the new practice.

o New laws create the need for new professional standards.

o Both suffering and foreseeable death are important in the reasoning behind

allowing and providing assisted dying.

o Different states have different resources/circumstances/situations that will

result in the same model law taking on multiple forms and facing a variety

of distinct challenges.

o Local health organizations such as hospitals and hospice centers can

provide a level of retrospective oversight.

o State governments should be more involved in practitioner support.

What we should avoid:

o Euthanasia should remain forbidden, as above noted above.

o Expanding the practice to allow nurse practitioners is unnecessary –

prescribing authority of NPs differs state by state, and there seems to be no

need for such expansion in the US to a different medical profession.

o Lack of reporting – statistical and case-based findings are important in

assessing any practice of assisted dying.

Switzerland:

The Swiss law differs from others in that it generally allows assisted suicide by any party as long as the motive is not a selfish one. (“Swiss Criminal Code, Art. 115,”

2014) There are no special legal provisions that provide guidance or oversight to doctors in particular, and no requirements of being near death or suffering or having any mental

92 or physical malady that might justify a decision to choose death over life. There is also no legally required collection of statistics or patient information.

In this extremely permissive society, several right-to-die organizations have filled in the vacuum by bringing together physicians and potential patients, setting internal standards of qualification and review, and providing a voice and degree of transparency to the inner proceedings of the practice itself. The three largest are Exit-German

Switzerland (Exit), Exit-Association pour le Droit de mourir dans la Dignité/Suisse

Romande (Exit-ADMD), and Dignitas. (Lewy Guenter, 2011)

Exit provides advance directives to all its members, and offers assisted dying for competent members who are either suffering unbearably or terminally ill and have a persistent desire to die. (Baezner-Sailer, 2008) It requires psychiatric patients to be seen by two psychiatrists and the oversight of its Ethics Commission (professionals charged with examining difficult cases before approving them), supports palliative care, and governmental regulation of assisted dying. (Lewy Guenter, 2011) Once the patient has made a witnessed and signed “suicide declaration” the patient is given the lethal medication, which is then ingested in front of a trained suicide attendant and an additional witness who can be the patient’s doctor or family member. (Baezner-Sailer,

2008)

Several studies of patient files and organizational structure have made most of its inner workings transparent, which has occasionally generated controversy regarding salaries and insufficient evaluation or adherence to safeguards by individual physicians, especially in psychiatric cases. In response, Canton Zurich and Exit entered into an agreement that gave legal weight to financial transparency and ethical guidelines through

93 various enforceable standards (ban on profit, length of relationship with patient, specialists for certain diseases, etc.). (Lewy Guenter, 2011) These regulations apply only to Exit operations within Canton Zurich, and not assisted dying generally, but represent a serious engagement of the government with the issues assisted dying raises.

Exit and Exit-ADMD serve two different regions of Switzerland and operate independently of each other. While Exit-ADMD policies and procedures are similar to

Exit, much less information is available on its workings and patient population. A unique aspect of its history is its agreement with two cantonal hospitals to minister to their patients, provided the patient is terminal, competent, and unable to be transferred to another institution. One hospital required evaluations of patients by psychiatric and palliative care service, and the final decision to be made by a committee composed of a physician, nurse representative, and two ethics committee members. The other hospital allowed Exit-ADMD to operate without any such restrictions but also prohibited its staff members from participating in assisted dying. (Lewy Guenter, 2011)

Dignitas separated from Exit in 1998. It has been controversial because of its substantial fees and provision of assisted suicide to foreigners, and thus criticized for enabling and profiting from suicide tourism. Furthermore, these foreigners often die within days or hours of arriving in Switzerland, undermining the ability of doctors to understand their patient’s suffering, its cause, and other potential palliative efforts that might reduce or extinguish the desire to die. In one case, a British conductor requested and received assistance in suicide without a terminal condition or clear cause of suffering, specifically so that he might commit suicide together with his wife who was suffering from terminal cancer (Burns, 2009). Dignitas has also been criticized for enabling

94 suicides in residential areas, or in one case a van in a parking lot. (Lewy Guenter, 2011)

Of course, since Switzerland does not recognize suffering or other considerations as part of the law allowing the practice, these are not legal issues, only professional ones.

There are several smaller organizations that operate with more limited scopes, and the debate about legal regulation continues. Professionally, after opposing assisted dying for 24 years, the Swiss Academy of Medical Science 2004 guidelines recognized the permissibility of a physician assisting in the suicide of a competent, informed, terminally ill patient. (Baezner-Sailer, 2008) Two years later, the National Advisory

Commission on Biomedical Ethics detailed the due care criteria involved in a physician assisting in a patient’s suicide, notably allowing for assisted dying in the case of both terminal and non-terminal patients provided severe suffering exists, along with other requirements (competency, lack of coercion, consideration of alternatives, second opinion, etc.). The organizational and governmental realities of assisted dying in

Switzerland continue to evolve in a much more multifarious and dynamic way than

Belgium and the Netherlands, with their extensive legal frameworks and nation-wide organizations that already oversee the vast majority of cases.

What we should learn:

o Advocacy organizations can help set standards and work with health care

institutions.

o They can also work with the government to better serve individuals with

some degree of transparency and public oversight.

o Professional organizations can proactively shape the practice, for example

by setting more restrictive guidelines than the law requires.

o Trained professionals are present and assure capacity and voluntariness

immediately prior to self-administration (from EXIT).

What we should avoid:

o Advocacy groups can be sources of controversy if they operate without

governmental or professional oversight.

o Non-physician assisted suicide would not work in America, especially

without regulation or oversight, as borderline cases will contravene the

state’s duty to protect the lives of its citizens.

Other Areas:

While assisted dying is legal or at least recognized in several other jurisdictions, for the purposes of this dissertation they have little of substance to contribute.

Luxembourg, for example, has a law similar to those of Belgium and the Netherlands, and a much smaller population that has limited the need for any sizeable research or organizational response to assisted dying. A Uruguayan law from 1932 excuses voluntary euthanasia by a doctor if he or she has an honorable reputation (Maguire,

1974), but I have found no scholarly publications examining the practice there. Similarly, several regional court decisions in Japan have laid down guidelines for legally acceptable assisted death (Hayashi & Kitamura, 2002), but this does not appear to have led to a significant public engagement or legally acknowledged practice.

In considering what they can contribute to the current argument, special mention should be made of the practice of assisted dying in two further jurisdictions: the Northern

Territories of Australia and Colombia.

The first law to specifically recognize the legality of physician-assisted dying was the Northern Territories of Australia, in 1995. It was only in force for a couple years before the federal government struck it down in 1997, and a mere handful of patients received aid-in-dying in that time. Nevertheless, it is notable for requiring both a psychiatric consultation, and a palliative care consultation. (“Northern Territory of

Australia Rights of the Terminally Ill Act 1995,” 1995) The law also allowed the development and use of Dr Philip Nitschke’s Deliverance Machine, a device that allows a patient to start an IV infusion of lethal medication by simply answering several questions on a computer regarding their intent to die.

Colombia legalized assisted dying via judicial decision in 1997 (Carlos Gaviria

Díaz, 1997), but though the court opinion called for a law to regulate the practice, no law has come forth in the years since. In 2015, however, the Health Ministry put forth recommendations for how to proceed following a request for assisted dying. (Colombian

Ministry of Health and Social Protection, 2015) In light of the issues assisted dying faces in America, these recommendations have two points of note. First, each request for assisted dying should result in the formation of an ad hoc committee to review it, consisting of a doctor specializing in the disease, a lawyer to review the application, and a psychologist or psychiatrist to confirm the patient’s capacity. Second, there is to be an official group charged with finding a new physician if the patient’s initial physician refuses.

What we should learn:

o The importance of palliative care consultation when responding to assisted

dying requests

o The possibility of devices that would obviate the need for voluntary

euthanasia in patients that could still give clear expression to their wishes

but have difficulty swallowing or initiating an IV.

o Having official mechanisms in place to prevent both doctor shopping and

patient abandonment.

What we should avoid:

o Lack of transparency, oversight, guidelines, and studies – meaningful

evaluation and adjustment of a practice can only take place if it is properly

and thoroughly examined by professionals and the public.

Conclusion:

The legal and practical aspects of assisted dying vary from jurisdiction to jurisdiction. This overview demonstrates that the same types of problems have resulted in many different solutions, some similar, others rather different. The question now becomes whether the issues implicitly present in the Oregon model of assisted dying can be addressed by incorporating practices from elsewhere. In the next chapter, I will argue for concrete ways in which the Oregon model can be improved thanks to the lessons from other countries’ versions of assisted dying.

Chapter 5: Plugging the Holes in the Oregon Model

Introduction

In previous chapters, we have seen that the Oregon Model of physician-assisted dying can lead to suboptimal and ethically questionable outcomes for patients who request aid-in-dying. Other nations have attempted various other solutions to these and other practical issues with assisted death. While certain practices such as euthanasia or non-physician-assisted suicide are not in line with the basic attributes of the Oregon

Model, other practices can be borrowed from these other countries and integrated within an Oregon-type approach to assisted dying to better address our concerns.

At the end of each section is a short list of recommendations, ranked roughly from most to least important in addressing the issues. Recommendations with a * are important direct responses to flaws in the Oregon Model, while those with a † may be more difficult to realize due to a variety of factors. Practice recommendations should be voluntarily implemented by the respective individuals or organizations within the framework of the current law. Legal recommendations are made to propose certain additions to the Oregon Model that future legalization attempts could include in their versions of the law, and states that already have legalized assisted dying could amend their current laws.

Integrating Health Care Team

Doctors who fulfill the requests for physician-assisted dying in America rarely have any long-lasting relationship with the patient. For example, the median length of

99 the physician-patient relationship in Oregon is only 13 weeks. (Oregon Public Health

Division, 2016) The Dutch-style family doctor who makes house calls and has a relationship with a patient over decades is largely non-existent in modern American medicine, where the primary physician is only one of an entire team of health care professionals working with the patient, including other specialists, nurses, physician assistants, hospice attendants, and more. So the driving force of “medical friendship”

(Clark & Kimsma, 2004) is not possible for most American physician-patient relationships.

Roughly 90% of those patients who use physician-assisted dying in Oregon were enrolled in some form of hospice care (Oregon Public Health Division, 2016), and it is not unusual for such patients to bring up their desire for assisted dying with their hospice care givers, nurses, or others with whom they have formed a meaningful bond. A hospice employee who spends an 8 hour shift in a patient’s home, or even visits a few times a week, is much more likely to form a bond than a doctor that sees the patient every couple of months at most. Even at a long-term care facility, nurses and other care givers are more likely to have regular extended interaction with the patients than a doctor, just by the nature of their professional roles.

Medical friendship may not be possible for most doctors in America, but an approximation of it is possible by taking a team approach. With the patient’s awareness and permission, doctors who are approached about assisted dying ought to use the insights of the other health care professionals available in evaluating the request as part of an overall care plan guided by the patient’s values and goals. Caregivers who know the patient well are in the best position to understand how such a request fits into the

100 patient’s overall view of their situation and goals for their remaining time. If assisted dying were just one more medical option among many at the end of life, as acceptable as any other, then all this would seem unnecessary. It is precisely because assisted dying is not normal medicine, but rather a last resort when other medicine fails, that having that additional insight into the patient’s psychosocial condition, values and history, is so important.17

However, though these health care workers can be a valuable resource to physicians in understanding the context of the patient’s request, the final decision regarding that option and its viability should be kept between the physician and the patient. Precisely because of the greater involvement and intimacy these persons may have with the patient, their professional role should remain normal hospice and palliative care, so that the patient continues to live in a supportive and caring environment. This includes the time after the patient has received the lethal medication and may consider using it. The doctor may choose to empower the patient in assisted dying, but legally and culturally that option is restricted to the medical profession. Other health professionals ought to maintain an unceasing and unquestioned commitment to the patient’s well- being, with minimal suffering.

PRACTICE RECOMMENDATIONS:

1. *Patients considering assisted dying should be enrolled in hospice, unless

their circumstances make it unreasonable or unacceptable.

17 That being said, such broad insight would be valuable in many other areas of care, especially end-of-life care independent of PAS; for example, it can be seen in the way hospice care takes a more in-depth holistic approach.

101

2. Physicians should actively discuss requests for assisted dying with hospice

providers and other caregivers, unless the patient expressly forbids it.

3. All informed care-givers should continue the discussion regarding the

appropriateness and realization of assisted dying, in light of other options

and the patient’s circumstances, before and after the medication is made

available. This should not be done in a way to encourage or coerce the

patient to stay alive, but rather to ensure that the reasons underlying a

decision to take the medication cannot be ameliorated.

LEGAL RECOMMENDATIONS:

1. *Require hospice as a prerequisite for assisted dying, unless a physician

documents the patient’s reason for its refusal.

2. Add physician responsibility to talk about the request with hospice and

other caregivers who see the patient regularly, unless forbidden to do so

by the patient.

Medical Presence at Administration

Following the passage of the first assisted dying law in Oregon, a guide book for health care professionals was prepared by a special task force. Here is what they had in mind regarding a physician’s presence during and after the patient’s self-administration of the lethal drug:

“The timing of the patient’s self-administration is best planned in advance to allow the attending physician and/or other support persons to be present. The physician’s presence assures continuity of care with other members of the health care team, and avoids involving covering

102

colleagues18 who conscientiously are opposed to the Oregon Act or are less informed about the patient’s plan for taking the medication to end life in accordance with the Oregon Act. If present, the attending physician can offer counsel and support to the patient and family during and after the patient’s self-administration of the medication. If not present, being available by phone at the pre-arranged time will provide some support to patient, family, and other health care professionals. If the attending physician cannot be continuously available from the patient’s self- administration until death, he/she should inform covering colleagues of the patient’s plan.” (Haley & Lee, 2008)

With words such as “care”, “counsel”, and “support”, it is clear that physician presence is meant to be the antithesis of the patient-abandonment opponents of legalization prophesied. Yet even though the guidebook authors later note that patients often form deep bonds with nurses, aides, and other caregivers, and are likely to talk at length with them about end of life options and the possible choice of assisted dying in particular, the authors do not assume or encourage these professionals’ presence. Why might that be so?

The doctor is the one who provided the medication for this special option outside of normal medical practice; by doing so the doctor has taken on a symbolic role of embodying the entire health care system. Though the proponents of assisted dying in

America have argued for it largely as a patient right, this choice was always viewed as taking place under the broader understanding of patient care, within the context of hospice, palliative care, possible mental health referral, and the physician caring for the patient’s health and well-being right until the end.

18 Language like “covering colleagues” may imply an inpatient setting, a hospice center or other care facility. Since roughly 90% of self-administration in Oregon and Washington occurs at home (Oregon Public Health Division, 2016; Washington State Department of Health, 2016), issues specific to at-home administration such as time and reimbursement will be considered at length later in this section.

103

Consider the furor caused by Jack Kevorkian’s methods of assisting suicide. True, he as an individual might have been present with the patient at the end. Yet the lack of an evident physician-patient relationship in the setting and interactions, the isolation of those discussions from attempts by the health care community at serving the patient’s well- being, his use of widely available and difficult to administer carbon monoxide as opposed to easily administered prescription medication, and his maverick approach rather than building a professional standard, all are problems that the law attempted to fix.

By writing the prescription, the physician takes on an additional role beyond providing for the patient’s health through normal medicine. They have now enabled the patient to take their own life when they so choose, and that assistance comes with a duty to see that final choice is executed appropriately. That is why it is best that the prescribing physician be the one to be present with the patient and family at the end, and the sentiments underlying the guidebook’s particular encouragement of the prescribing physician’s presence.

Yet the complexities and demands of modern health care may not make such presence easy or even possible. And at times the patient may feel closer to other caregivers with whom they have had more frequent, enduring, or meaningful interaction in recent weeks or months. The patient does have the right to privacy regarding the circumstances of their self-administration, and this should be respected as much as possible. If necessary, being available by phone or having another care-giver present are two ways of accommodating patient preferences and physician schedules, perhaps suboptimal but far better than no presence at all.

104

Without physician or care-giver presence at the actual moments before and after self-administration, the patient’s decision is removed from the medical context and health care relationships in which it properly belongs, and shades of Kevorkian-type assisted suicide can creep back in. After all, the patient is engaging in a medical act, the taking of medication. The guidebook rightly points out that a physician or other health care professional may not lend untoward assistance to the patient in ingesting the lethal medication, but does not preclude reasonable attempts that would be made for any other medication the patient chose to take, such as anti-emetics.

In the absence of a physician or health care professional, it may come down to family members or helpers to prepare the medication and see to any other concerns in the patient’s final moments. Dozens of pills need to be opened and their contents mixed into an appropriate liquid for easy administration. The patient needs to take anti-emetic and anti-seizure pills to prevent complications, and they must be ingested a certain amount of time before the lethal medication. For someone with training or experience, this can be an easy task, but one family in California found the entire experience hectic, stressful, and far from the peaceful farewell they envisioned. (Van Zandt, 2016) The writer of the story bemoaned the fact that the law forbade her aunt’s doctor from being present, when the law has no such requirement. However, it is possible the health care institution to which the physician belonged forbade them from being present, as some hospice organizations do in Oregon and Washington. (Campbell & Black, 2014; Campbell &

Cox, 2010) A physician cannot give “counsel” or “support” or assistance of any kind if they are not allowed be present, or choose not to for whatever reason.

105

Additionally, no reference in the guidebook recommendations is made of a physician who can ensure that the patient’s actual self-administration is both voluntary and intentional. These are lethal drugs to be ingested, so there should be concern that they might be ingested hastily, unreflectively, or even unknowingly if an impatient family member attempts to circumvent the patient’s right by mixing the medication with another meal. The last is admittedly rather unlikely, yet the concern about patient’s not taking the medication in a planned, reflective way was great enough that the California iteration of the Oregon law included an additional form to be signed by the patient indicating intent to ingest the medication within the next 48 hours. (HSC 1.85.443.11c) A professional standard requiring a health care provider’s presence would act as an additional deterrent to such unreflective administration. If the patient is regularly seen by a caregiver then the medication might be taken quickly but not before an extensive conversation about the reasons and alternatives. If the patient is not regularly seen, an appointment would have to be scheduled for the administration and the conversation would happen either while making the appointment or at its beginning.

The language of the guidebook seems most appropriate to the scenario in which the patient is going to self-administer the medication in a health care facility of some sort.

The consideration of “covering colleagues” and the notion that other health care professionals being present or otherwise readily available in rotating shifts so that at any time a physician who opposed assisted dying might be present, calls to mind a hospice center or other institution. Yet the data from Oregon indicate that 93.4% of patients chose to die in their own homes. (Oregon Public Health Division, 2016) This is entirely understandable; most persons would prefer to die in familiar surroundings rather than

106 have their final moments medicalized, surrounded by beeping machines and concerned well-meaning strangers.

However, rather than obviate the importance of physician presence, I would argue that these at-home deaths are in greater need of it. For without a medical environment, there is a lack of emphasis on the relationship of the patient to a larger health care community that is committed not just to the provision of an optional death but also, and primarily, the minimization of suffering and continuation of life. Without that presence of a health care professional, the goal of continuing care for the patient right until the end is lost, as well as the possibility of providing support for the family. Also, the scenario of the patient taking the medication ineptly or without full voluntariness or intention is more likely to take place in the absence of health care facilities and professionals.

Regardless of the patient’s location or choice of time for their self-administration, and barring the patient’s outright request for privacy, the prescribing physician has a duty to be present if possible, or ensure that another health care professional most acceptable to the patient and family takes their place. Even if the patient and family request that no one is around during the final moments, reasonable steps should be taken in the hours leading up to the planned self-administration to see to the patient’s comfort and well- being, to ensure the patient acting according to their own will, and to remind both the patient and the family that all health care professionals are willing to continue their care to whatever end the patient may choose. This might include a caregiver meeting with the patient briefly several hours before the set time, or even streaming the patient’s final moments to a remote caregiver, if that is preferable. If a patient is unwilling to take such

107 reasonable steps, a doctor has every right to choose not to prescribe the medication to the patient.

Another question must also be addressed: must the doctor or other professional volunteer their time, at the cost of their leisure or other professional responsibilities?

After all, unlike the Netherlands, the United States does not have a health care system that includes any significant presence of house calls—though they can be cost effective for Medicare and may become more common in the coming years. (Karlamangla, 2017;

Rosenberg, 2017) If a patient is at a hospice center or hospital, the institution could readily provide for an appropriate professional’s presence, especially if the prescribing physician is on staff or affiliated, and they ought to do exactly that, rather than forbidding their presence as some in Oregon and Washington have. (Campbell & Black, 2014;

Campbell & Cox, 2010)

This would not work for the majority of patients, since they prefer to take the medication at home, so one should find a way to compensate doctors for a one-time visit to the patient’s house to oversee the ingestion of medication. Unfortunately, such a change to health care reimbursement would probably need to be through Medicare, which is at the federal level rather than the state level, and so beyond any state’s assisted dying law. Furthermore, since even a seemingly innocuous reimbursement of physicians for having conversations about end-of-life options was initially removed from a draft of the

Affordable Care Act after detractors said it was equivalent to a “death panel” (Rutenberg

& Calmes, 2009), one can imagine the field day opponents would have with paying doctors to sit by and watch patients kill themselves. Barring an unforeseeable shift in either national assisted dying legislation or health care financing, it seems that the

108 physicians of patients taking the medication at home would likely have to donate their time to be present.

However, almost all such patients are receiving some form of at-home hospice that should involve regular visits from care-givers and nurses. If that hospice has a provision to allow for a house call by a physician, then it should include within its policy on assisted dying that such a house call should occur when the patient intends to self- administer the medication. If not, the preparation and ingestion of the medication should be timed to coincide with a hospice nurse’s visit, and the prescribing physician should be strongly encouraged to be present—even if inconvenient and unreimbursed—or otherwise available by phone.

All this will not stop a determined patient from willfully ingesting the medication without a health care professional present even without getting an exception.

Nevertheless, having a culture of presence will help ensure that in almost all cases, not only is a patient’s final act voluntary and well-considered, but the health care community stands ready to support and comfort the patient and family at this difficult time.

PRACTICE RECOMMENDATIONS:

1. †Prescribing physicians should be present at patient’s ingestion. This

should be normal practice and the standard of care when it comes to

assisted dying.19

19 Physicians in the Oregon Model have not so far embraced this responsibility, and while some guidelines recommend it, many do not or downplay it. Problems include the need for scheduling, the not wanting to hold a patient to a timeline or cause them to feel that they will disappoint others if they do not do so, and the length of time between ingestion of the anti-emetics, to the lethal medication, to unconscious and then death taking several hours. Many physicians who do not have strong relationships with their patients may feel it inappropriate to be there, finding it a distraction or not a worthwhile investment. Hence the recommendation that another health care provider be present if the physician is not is more practicable and so important.

109

2. *If this is not possible, a health care professional known to the patient and

family should be present and in communication with the prescribing

physician.

3. Only a patient’s clear and enduring request for privacy should result in no

health care professional being present.

4. *†In such a case, the exact timing and manner of the patient’s planned

ingestion should be discussed with the physician or health care team in the

days and hours leading up it.20

5. †Hospitals and hospice centers should require any assisted dying on their

facilities to include the presence of an appropriate health care

professional.21

6. *At-home hospice providers should work with patients and families to

ensure a physician or a nurse is present during the ingestion.

LEGAL RECOMMENDATIONS:

1. *†State laws should require a physician or other health care professional

be present. A patient can make a documented request for an exception

that shall be granted after a discussion about the underlying reasons

behind their desire for privacy. 22

20 A patient who does not want a health care professional present should not lose the support and safeguards with come from discussing the circumstances and timing beforehand. 21 Since many institutions forbid staff presence, this represents a strong shift away from current practice, one that many hospice providers may feel is against hospice’s core values. 22 This goes against the current law which explicitly allows institutions to forbid staff presence if the act takes place on their property. But without such a legal requirement, the professional recommendations have little force behind them. In any case the patient is not bound by them and can still take the medication any time, but nevertheless the health care professionals should do what they can to be supportive and present.

110

Trained Consultants for Difficult Cases

The paradigmatic case for assisted suicide laws involves a long-standing physician-patient relationship in which the patient is clearly dying in a matter of months, and wishes to avoid current or foreseeable (and otherwise unmanageable) suffering in the final days/weeks of life. The patient clearly has capacity, the doctor understands that this request is in line with the patient’s values, and writes a prescription while nevertheless continuing other supportive care measures such as hospice care. Family and loved ones value the life of the patient yet respect the choice they are making. Yet cases are not always that simple and clear cut.

The following are situations that deviate from the norm significantly enough to warrant additional examination by someone with proper training in this particular practice:

 The doctor is attempting to answer the request of a patient with whom

she is unfamiliar, for example due to a facility transfer.

 A previous doctor refused the patient’s initial request.

 The family is more supportive of the idea than the patient.

 The family is conflicted or opposed in a way that wears on the patient.

 The patient refuses to tell the family.

 The patient is refusing hospice, palliative care, or other supportive

interventions that might help make life worth living for a while longer.

 The patient has a history of mental illness.

None of these are reasons to deny a patient’s request, and many doctors would probably be prepared to handle any one of them rather well. And in many cases other

111 caregivers might be able to provide help if they spend additional time with the patient/family and can be a source of information for the doctor about the underlying reasons for the complex situation.

However, since the law does require that the patient’s medical condition and capacity to make this choice be verified by a second independent physician, this seems to be an excellent opportunity to have a small group of trained consultants available for just these cases. Such training could start with just a few individuals for a given area, as they would initially be called in only for difficult cases that would occur maybe a handful of times a year. If both prescribing and consulting doctors find the training helpful in anticipating and meeting the needs of their patients, then it could be expanded. If the number of cases per year remains less than 1% of annual deaths, then very easily the vast majority of consultations could take place with a physician who has additional training specifically for the issues that may arise in requests for assisted dying.

This is what we have seen in the Netherlands and Belgium: the SCEN and LEIF physicians are on call and available to their community to provide the benefits of their more extensive training and experience. The Dutch End-of-Life Clinic is available to anyone whose physician turns down their initial request, and they work with the initial physician rather than starting fresh to better serve the ideals of medical friendship.

Colombia has an official mechanism to provide patients with a new physician if their first one refuses to consider the request for professional or personal reasons. In Canada, there is the Canadian Association of Medical Aid-in-dying Providers (CAMAP) that is looking to clearly articulate and address the more difficult issues that arise occasionally and generally in the provision of their newly-legalized assisted dying. In the United States,

112 there is a need for a similar body to be on call for their fellow professionals. However, given the apparent lack of a spontaneous response in the various states that have passed

Oregon-type laws, there should be an explicit requirement added to the law. For instance, the law could empower the authority in charge of overseeing the practice, usually the department of health, to work with local health care authorities such as professional associations, advocacy groups, and networks of health care institutions, to train a small set of physicians across the state to serve in this role and appropriately advertise their availability.

The question necessarily arises though: who provides this training? It must be a group of physicians, one with a significant presence and authority in the areas in which assisted dying is legalized. Patient advocacy groups such as Compassion and Choices could have a role to play in this training, but the best approach would be for the professional physician organizations to take on the task of training their own to best perform these tasks. Professional organizations should also provide or lobby for appropriate compensation for the education and training of the specialists.

PRACTICE RECOMMENDATIONS:

1. *†Physicians should seek personalized and trained help for patients who

have one (or several) cautionary indications.23

2. Such individuals should ideally be part of an organization that meets

regularly, is well-known, and widely available.

23 This is perhaps the most difficult recommendation to implement, because who trains them, what does the training consist of, and what responsibilities should they have? I have tried to provide some answers based on the practices in the Netherlands, Belgium, Canada, and Switzerland, but in America whether these are workable options remains to be seen.

113

3. They can be from an advocacy organization such as Compassion and

Choices, or a state-wide professional organization.

LEGAL RECOMMENDATIONS:

1. †Require the overseeing authority (e.g., department of health) to work

with local organizations such as professional associations, advocacy

groups, and health care institution networks to ensure that a well-trained

group of individuals is available and publicized.24

Professional Organizational Support

In other countries, in which the doctors have been at the forefront of the argument for assisted dying, physician organizations have taken a proactive role in both the political recognition of and the professional preparation for the new practice.

The Royal Dutch Medical Society (KNMG) took an active role in shaping euthanasia following the early court cases that legitimized it, studying the practice extensively, looking for ways to improve its safeguards, and lobbying for political changes to affect its findings. They also provide support and training for individuals who are directly involved in various roles, including consultants and case reviewers. One can look at Belgium, Luxembourg, Switzerland, and now Canada for similar examples of professional organizations taking the lead in establishing standards, facilitating inquiry and transparency, and above all providing support for their members embarking on this new, controversial, and ethically hazardous practice.

24 This is an additional duty for the Department of Health beyond mere oversight and reporting, and may be met with some backlash.

114

There are two overlapping ways organized medicine in the US needs to respond to assisted dying: supporting its members for individual cases and helping to evaluate the practice as a whole. Let us look at each in turn.

Following the legalization in Oregon, interviews regarding the physicians’ first impressions expressed a variety of positive and negative experiences with the process.

While few physicians had any regrets, there were several aspects they wished were otherwise. For example, a few did not feel able to talk about the experience with their peers without fear of arguments or judgments, given the contentious nature of the practice, in the abstract and potentially with regard to a given patient. (Dobscha et al.,

2004) There was no one to get guidance or support from, no mentors or colleagues to look to. Because the entire practice was framed as a patient right, physicians became mere gatekeepers. As noted in chapter 3, there was little response from organized medicine in the respective states except to take a hands-off position of studied neutrality

(at best), to let individual physicians act as they would without assistance or censure.

Some national organizations, such as the American Medical Women’s

Association, the American Medical Student’s Association, and the American Public

Health Association, have politically supported access to assisted dying. However, as expressed in their respective statements on the issue, their advocacy regards access, not process. It is true that the majority of Americans do not have access to assisted dying currently, so unlike the state-level organizations they are not forced to consider the clinical realities that exist following legalization.

Neither studied neutrality nor political advocacy is enough to address practical issues with assisted dying as they arise; as long as the professional members remain

115 divided on the issue, what is needed is neutral engagement with a new and evolving practice. (Frye & Youngner, 2016) Physician organizations need to be proactive in their response, answering and anticipating the questions and concerns of their members who decide to consider participating. Groups such as the AMA and the ACP have the potential to act intentionally as moral agents to advocate on behalf of patients and the public at large. (Fleming, 2015) They should fulfill this responsibility by providing continuing medical education materials for their members on the procedures, problems, and best practices regarding assisted dying. These could take the form of online presentations or videos, conferences or other meetings to discuss and publicize how best to respond to the general request and patient particulars than might affect the decision on whether to move forward with it. There is some material available in this vein,25 but it tends to focus only on explaining the language of the law and its implementation, rather than the developing practice and experiences of other physicians.

In addition to these education efforts, the needs of collegial support can similarly be provided for by encouraging local groups that regularly meet to discuss these matters and any related end-of-life issues. If trained or otherwise qualified consultants are known to the organization, that fact should be made public to members such that any physician facing a difficult or unusual situation can request access to these physicians, either for advice or for their actual assistance as the legally required consulting physician. Having such a list of individuals available would also provide a potential resource for physicians as they follow through with the request (or choose to not do so), for then they would have

25 For examples, see http://www.cmanet.org/about/patient-resources/end-of-life-issues/ and http://www.familydocs.org/eol/end-of-life-option-act.

116 respected colleagues with whom to discuss the case and their own feelings about it without fear of being judged or condemned for their actions.

Looking beyond the individual cases, physician organizations can be instrumental in determining standards of practice. Recall from last chapter that in Switzerland, professional groups and advocacy organizations filled the vacuum of a completely permissive law by publishing recommendations regarding patient qualifications and physician process. The Oregon model already incorporates a certain baseline for the physician to follow: confirming the diagnosis, prognosis, and capacity of the patient, discussing other efforts that can be made, etc., but this does not prevent the profession itself from setting higher standards for their members. For example, currently psychiatric evaluation is very rarely requested, but there is some evidence that a significant number of persons who gain access to the lethal medication are clinically depressed. (L. Ganzini et al., 2008) This alone does not disqualify their eligibility under the law, and depression is understandable when facing loss of abilities, pain and suffering, and impending death.

Still, it is possible that when considering such general cases or how the practice is evolving, a physician group might hold that psychiatric evaluation should be the norm rather than the exception. While care would need to be taken that psychiatrists and psychologists do not become gatekeepers to the practice (M. Sullivan et al., 1998), a professional recommendation supported by evidence and not legally binding is different from a legal requirement. Or perhaps a palliative care consultation during the two week waiting period would be found helpful, especially to patients not enrolled in hospice.

To best study and improve the practice, however, physician organizations need access to case data that is currently only reviewable by the state health departments. The

117 law should be changed so that these organizations work more closely with the health departments to come up with case-based recommendations. Alternatively, a more robust system of case review needs to be in place for the organizations to draw their recommendations from, as argued in the next section.

PRACTICE RECOMMENDATIONS:

1. *†Professional organizations should espouse a position of engaged

neutrality, to include the following:26

a. Training a small set of individuals for more difficult cases

b. Providing additional educational material and a safe place for

conversation about experiences with assisted dying

c. Defining and evaluating professional standards beyond the law

LEGAL RECOMMENDATIONS:

1. †Official process by which professional organizations can evaluate the

current practice of assisted dying27

Prospective and Retrospective Review

An additional recommendation that should be supported by physician organizations is far more in-depth case review. There are at least two reasons to review each case: to protect the patient in a given case, and to help ensure that physicians are

26 Most professional organizations currently have divided membership, but issues with assisted dying have so far only solidified stances of opposition or studied neutrality rather than promote engagement. 27 Releasing patient records to a third party for review is already part of the law, but that third party is currently an agency of the government rather than a professional association. Releasing such private information to a non-governmental organization may be seen as an unnecessary violation of the patient’s right to privacy.

118 adhering to the standards of both the law and their profession. These twin goals are not independent, as a physician who fails to meet the standards of the law may put a given patient at risk through their negligence by, for example giving a patient with a non- terminal prognosis an inaccurately negative prediction of their future and a lethal option on top of it. Additionally, case review can provide valuable insights into the practice, which the reviewers can then use for education of physicians and the public, helping to ensure continual quality improvement.

Physician consultants are a form of minimal prospective review required by the law. They review the details of the patient’s diagnosis, prognosis, and capacity to make the decision to choose assisted dying, as a check against any single physician either making an error in evaluating the patient, or intentionally subverting the system by ignoring or falsifying a particular prerequisite. With regard to the requirements of the law, namely a terminal illness and the capacity to make an important decision in light of one’s medical situation, only another physician is qualified to confirm the patient’s current and future condition.

Yet there are other options for review with regard to the particulars of an individual patient’s circumstances and options. The defunct law in the Northern

Territory of Australia, for example, required a palliative care consultation to help ensure that the patient’s symptoms were managed as best as possible, to help ensure that avoidable suffering is not the root of the patient’s request. (“Northern Territory of

Australia Rights of the Terminally Ill Act 1995,” 1995) While palliative care is not required for patients under laws in the US, doctors are required to mention medically appropriate options such as palliative care and hospice care to the patient, and over 90%

119 of patients who have died from the prescribed medication in Oregon are enrolled in some form of hospice. (Oregon Public Health Division, 2016) Similarly, nurses, home care givers, social workers, patient advocates, ethics consultants, all can and should be called in if their respective areas of expertise might be helpful. An example is found in the How to Die in Oregon documentary, featuring a volunteer from Compassion and Choices who had worked with the patient and family for several weeks and helped ensure that everything was proceeding as it should, even being present and confirming capacity at the time of the patient’s self-administration. (Richardson, 2011)

In addition to prospective review, almost every jurisdiction has some form of retrospective review: the regional review committees of the Netherlands, the institutional review committees found in Quebec, the police investigation of every “unnatural death” in Switzerland, and the state department of health in the Oregon model. Currently, nothing would stop a health care institution in the United States from performing its own case review beyond any statutory requirement. If an institution has a dedicated ethics committee that meets regularly its members may take it upon themselves to do just that, both in the goal of reviewing the case in particular and to better design or refine any institutional policies regarding such cases.28 But this level of review is only possible because the case details are readily at hand: the chart is directly accessible, the clinicians can be called upon for their views and recollections, and if necessary the patient or their family may be contacted to address any questions that arise. A rich case narrative would thus be built and a robust ethics review can take place in light of it.

28 Granting that ethics committees and consultants are not themselves physicians, and would have to be educated or trained in the issues specific to PAS case review.

120

The documents that are submitted to the health department in the Oregon model lack this narrative component. They are forms with boxes and signatures, and while access to the medical record is available to those reviewing it, there is no requirement to examine anything beyond the bare bones of the case: a confirmed terminal diagnosis, capacity, and a witnessed request with a waiting period. No documentation regarding the adequacy of palliative care and hospice in managing symptoms, or the reason for the patient refusing them if they are absent. No notes detailing any discussion about the circumstances under which the patient would prefer to use the lethal medication, and why those circumstances justify such a response in line with their world view and life goals.

Let us take the hospice example. By law a physician is required to mention hospice as a care alternative to physician-assisted suicide. But they are not required to discuss at length what hospice is or what particular services would be appropriate and helpful in light of the patient’s condition, or to ask for a consultation to better present the option if they are less familiar with it. One focus group study of different physician groups found that perceptions of palliative care varied with specialty, and that many were ignorant regarding the specifics of what local palliative care consultants offered to patients. (Hanratty et al., 2006) Physician inexperience with and lack of knowledge regarding hospice is a major barrier to hospice referrals. (Mcgorty & Bornstein, 2003)

This is unfortunate, because doctors may need to do some explaining and convincing if patients or families are themselves ignorant of what hospice can offer them.

Outside of assisted dying, some patients and families hear the terms “hospice” or

“comfort care” and may equate them with giving up, halting beneficial or particular life- prolonging treatments, accepting death rather than encouraging life and health in the time

121 that remains to the patient. To prevent premature refusal of hospice by patients or family who have misconceptions regarding how such care would help their particular situations, the care plan needs to be discussed at length rather than merely mentioned. In the same way, patients who seek assisted dying might equate hospice with accepting a medicalized version of dying rather than the self-sufficient one they pursue, or view the measures as unnecessary because they will “take care of things” before they get to the point where all that care would make a difference. Even characterizing hospice care as an “alternative” to assisted dying is not just problematic, but in fact misleading, as almost all persons who choose legal assisted dying in the states are enrolled in some form of hospice.

This is not to say hospice care is for everyone, nor that it an essential prerequisite for someone considering assisted dying. Of course patients reserve the right to refuse any medical care they do not want, but what matters here is that they have a very clear idea of the care they might be refusing. This example certainly brings to light various echoes of past recommendations: professional organizations educating physicians in having these conversations or promoting a standard of care involving hospice unless it is not reasonable for a given patient, trained consultants to better assess patient needs and how to meet them, integrating other health care professionals who can also talk at length about hospice care, etc.

But consider the following: a physician may be more motivated to have a more in depth talk about hospice care with a patient if she knows that she will later have to write- up a detailed narrative of the patient’s history and choice, or could have discussions about the patient with other hospital staff reviewing the patient’s case later, rather than merely check a box and sign a form indicating that hospice care had come up in the discussion of

122 the patient’s request. The knowledge that one will need to explain oneself and one’s actions to another person is a greater motivator than the need to fulfill a requirement and check a box.

So I propose the following: that in addition to the forms that the department of health collects, the physicians also should write-up a 1-2 page narrative detailing the patient’s prognosis, deliberation, the care they received during and after the request, and how they lived and died following the receipt of the medication. Any details that made the case more difficult or unusual should be noted, along with how the physician responded. It should certainly be placed in the patient’s medical record and be accessible to the department of health if they request it. To protect the patient’s privacy, some might suggest that it should not be required to be sent to the department of health or reviewed by anyone outside of those directly responsible for the care of the patient, but there is an additional advantage that comes from those cases being made available to others: only then can difficult cases become teaching tools to help physicians who face similar issues in ways that better serve the patient.

PRACTICE RECOMMENDATIONS:

1. Health care institutions implement some form of retrospective review to

consider the patient’s request and death in light of the particulars of that

case. This could be done with maximum protection of patient anonymity.

LEGAL RECOMMENDATIONS:

123

1. *†The law should require an additional write-up of the case by the

prescribing physician, for placement in the patient’s chart with a copy

available to the overseeing authority for retrospective review.29

Publication of case narratives

Rather than merely publish statistical and categorical data from years past, the department of health can and should take a proactive role in working with professional organizations to shape the standards of care regarding the emerging practice. If the department has access to case narratives from all the patients that receive legal assisted dying, then it can identify various cases that exhibited certain moral or professional difficulties for the physicians involved. It can then pass on a de-identified version of the narrative to professional organizations for consideration, ideally resulting in a recommendation for how to handle such cases. Such discussion can take place among a small committee with the results published alongside the case, as is the case in the Dutch yearly publications (Regional Euthanasia Review Committees, 2015), or a tough case may be circulated among the whole membership to encourage discussion and debate as the Canadian Association of MAiD (Medical Aid-in-dying) Assessors and Providers has done in its first newsletter. (Green, 2017) The case presentation must be careful to prevent any personal details from being recognizable, of course.

Individual cases have served as education tools on both sides of the assisted dying debate. After the law was legalized, Compassion and Choices put forth a collection of cases on how the law works well. (Lee, 2003) Meanwhile, critics of the law collected

29 Physicians may object to unnecessary paperwork, but to better understand the practice and enable many other recommendations given here, accurate write-ups of all cases is essential.

124 their own set of cases to reveal “the other side” of the practice, what happens when it does not work as envisioned. (Herbert Hendin & Foley, 2008) Interestingly, these two collections both included a version of Kate Cheney’s story, presented rather differently and illustrating that without some official responsibility to present cases in a neutral, educational fashion, a case’s presentation can be influenced by the agenda of the person writing it up. Similarly, we cannot rely on cases that are volunteered to organizations or researchers, because the reasons for a patient/family/physician refusing to volunteer their case may be because the greater scrutiny it would invite would not fit with their own agendas, or might reveal details that call into question the adequacy of the law or their adherence to it. It is precisely those cases that need to be reviewed for inclusion and thus their submission to the publishing authority must be a requirement rather than merely an option.

So an officially empowered, theoretically neutral party such as the department of public health or an organization they appoint is needed to review case narratives and patient charts, and if necessary interview caregivers, so that they may present cases in as factual and apolitical a manner possible. This approach would best help its audience understand the practice and how its particulars should be handled. They are also as a means of standardizing the practice among doctors and across state lines. Incidentally, this would help address the criticism of “doctor shopping” that is occasionally raised, for a standardized practice means potentially less variability in individual responses to borderline cases, in addition to having greater guidance to draw from.

Such cases would ideally be publicly available as well, because it is not just physicians who benefit from seeing that these challenging cases are real and how they

125 should be answered. Granted, putting difficult cases in the public eye can have an inflammatory response among certain members of the public, and can result in the decrying of the practice as a whole by its detractors. (Herbert Hendin & Foley, 2008) But if the cases are presented by an official body rather by the popular press, and complete with appropriate professional recommendations for how it should have been handled, then the profession and the patient at least will be better served even if the public debate remains heated.

It must be a legal requirement for all cases to include this narrative in their submission to the department of health. The Dutch experience before their official law came into effect helps show that it is the difficult or contentious cases that are the most underreported, and the physician who gives the minimum of care to a patient will be likely to give a minimum of forms to the department. Nevertheless, if it were to become a professional standard that such case narratives be entered into the patient’s medical chart, and if that standard gained traction throughout the community to the point that the narrative’s absence is a reason to investigate the case more thoroughly, then I think we will see positive effects both in patient care and in professional preparedness.

PRACTICE RECOMMENDATIONS:

1. *Authorities such as health care institutions and professional organizations

should collect and disseminate cases to their employees/members to illustrate

different circumstances arising in assisted dying requests and how they should

be handled.

2. Such cases should include ideal examples as well as problematic cases and

how the latter should best be handled.

126

3. The privacy of the patient and confidentiality of the caregivers should be

assured in any case publication.

LEGAL RECOMMENDATIONS:

1. *Doctors should be required to send narrative write-ups of their cases to a

central authority in each state (such as the department of health)

2. The central authority should edit these cases, or use them as the basis for

substantially similar fictional cases, and then release them to the public

3. *Problematic cases should be accompanied by an official recommendation by

a professional organization for how they should be handled.

127

Chapter 6: The Future of the Oregon Model—California and Beyond

In the past year, Colorado and the District of Columbia have legalized their version of the Oregon Model, and doubtless more states will follow in the years to come.

We are at the tipping point when assisted dying will become more and more widespread, as two factors come together: aging baby boomers confronting the increasingly medicalized dying process, and the increasing familiarity with and confidence in assisted dying thanks to the years it has been present in the Pacific Northwest without any public outcry or nationally publicized incident.

This year also marked the first data release from California, covering the latter half of 2016, including such important details as the patient’s underlying illness, insurance coverage, and hospice/palliative care enrollment. (California Department of

Public Health, 2017) However, unlike the data reports from Oregon and Washington

(Oregon Public Health Division, 2016; Washington State Department of Health, 2016),

California does not collect or report a host of important information: the area of the state the patient lives in, the patient concerns driving the decision, whether there was a psychiatric evaluation, where the patient was at the time of ingestion (home, hospital, care facility, etc.), whether any health care professional was present, what medication was used, the time from ingestion to unconsciousness to death, and whether there were any complications. Also, California is unique in requiring a “final attestation” form the patient must sign less than 48 hours before the time of ingestion, but no data on this form are reported so the degree of compliance with this novel requirement remains unknown.

128

This information is even more critical to know from California, because its large population and greater cultural and racial diversity make it very different from Oregon and Washington. The palliative care programs available through California health care facilities also cover significantly less of the population in both inpatient and outpatient settings compared with other states that have legalized assisted dying. (Petrillo, Dzeng, &

Smith, 2016) California is the most significant test for assisted dying since the original

Oregon law. As long-time Oregon Model researcher Dr. Linda Ganzini said, “Whether

California with its more diverse population and its less inclusive palliative care program will be able to replicate Oregon’s reassuring experience with physician-assisted suicide remains to be seen. It might very well be that it is not so much the legal safeguards, but

[Oregon’s] social safety net that prevents abuses in end-of-life care from happening.”(Linda Ganzini & Edgar Dahl, 2008) By denying the public such information that other states deemed important, California not only makes it more difficult to understand the practice, but also prevents appropriate measures from being undertaken in response to perceived inadequacies. For example, the collected data will not reveal whether California prescribing physicians are as unlikely to be present at their patient’s self-administration as their peers in other states, but nevertheless there is just as much reason for them to be there.

How California implements the Oregon model will influence other states when their versions of the law are passed. Physicians might become mere gatekeepers and rubberstamps, institutions and professional organizations might succumb to complacency and disengagement masquerading as studied neutrality, and the state may continue its

129 inadequate collection of only a few data points. Of the various concerns detailed in

Chapter 3, several are of greater concern in California.

Consider the potential distortion of the physician-patient relationship in light of the lower access to palliative care noted above. If patients are not getting care to address the daily suffering that comes from a terminal illness because such care is not available in their area, what alternatives can the patient consider? Such a patient may have a discussion with a physician about assisted dying and completely dismiss the part about hospice care because of its apparent irrelevance to their situation. Rather than having a collaborative moment to consider how best to address patient concerns at the end of life, the doctor becomes a mere rubber stamp on the way to the lethal medication.

There is further risk of a perceived moral equivalency of assisted dying to other options, given that the California government will pay for the lethal medication with state funds. (Leonard, 2016) This does allow the poor or underinsured to have better access to lethal medication and so not be forced to stay alive, but it also contrasts unfavorably with decisions not to cover treatments with a low but non-zero probability of lengthening the patient’s life. If a patient wants a chance to live and threatens to involve the media when insurance companies or state insurance offer to pay for death but not life, the alternative treatment might be reimbursed for that patient, as in the case of Randy Stroup in Oregon

(Richardson, 2011), but this forces patients at the end of their lives to fight media battles to get the treatment choice they want. Already one patient in California has become the face of a “Right to Live” movement to counter the idea that death should or must be accepted. (Peyser, 2016)

130

The experience of Colorado will be different, as will that of DC, and other states that pass the law in the future, but each one will find that the practical issues of assisted dying must be addressed to best serve their patient population. All states should look to the decades-long history of assisted dying in the Netherlands, Belgium, and Switzerland, and especially the continued public and professional engagement of the issue in the

Netherlands. They should also work with our northern neighbors in Canada as they attempt to implement their own models of assisted dying with greater transparency and organizational support. We have valuable lessons to learn from the practice of others, as much as from the original law in Oregon itself.

I believe the onus of continued engagement with these issues lies primarily with the professional organizations and health care institutions. Individual physicians will only face a few cases a year at most, while the public will only encounter the issue in the media or when it affects a loved one. Institutions must make and enforce policy, while organizations can set up task forces and subcommittees devoted to the issues that arise. It is my hope that a group of California physicians, in cooperation with such groups as

Compassion and Choices and with the blessing of the California Medical Association, will work with health care institutions to study the issue thoroughly, while advocating for greater transparency, training, and case review. This professional engagement would provide political pressure to make some of the legal changes proposed in the previous chapter, as well as help ensure the practical changes receive the publicity and support necessary to achieve widespread adoption.

The Oregon Model is not a one-size fits all, tried and true approach to assisted dying. It is an underlying framework that each state not only must adapt to its

131 circumstances, but continue to evaluate and debate. The shortcomings detailed in this dissertation are manageable. It is my hope that engaging these issues proactively will help ensure a high standard of care for those considering assisted dying, in those states that have legalized assisted dying and those that may in the future.

132

References

Chapter 1

Altmann, T. K., & Collins, S. E. (2007). Oregon’s Death With Dignity Act (ORS 127.800-897): a health policy analysis. Journal of Nursing Law, 11(1), 43–52.

An Act respecting end-of-life care, Pub. L. No. RSQ c S 32.0001 (2014). Canada.

Back, A., Starks, H., & Hsu, C. (2002). Clinician-patient interactions about requests for physician-assisted suicide: a patient and family view. Archives of Internal Medicine, 162, 1257–1265.

Baron, C. H., Bergstresser, C., Brock, D. W., Cole, G. F., Dorfman, N. S., Johnson, J. A., (1996). A Model State Act to Authorize and Regulate Physician-Assisted Suicide. Harvard Journal on Legislation, 33(1), 1–34.

Barry, R. (2012). The Development of the Roman Catholic Teachings on Suicide. Notre Dame Journal of Law, Ethics & Public Policy, 9(2), 449–501.

Baxter v. State, 224 P.3d 1211, 2009 MT 449, 354 Mont. 234, 2009 Mont. LEXIS 695 (Mont. Dec. 31, 2009).

Bendavid, N. (2013). For Belgium’s tormented souls, euthanasia-made-easy beckons. The Wall Street Journal.

Brock, D. W. (1992). Voluntary Active Euthanasia. The Hastings Center Report, 22(2), 10–22.

California, S. O. F., & Material, E. L. (2015). Assembly Bill No. 15, (15), 1–26.

Callahan, D., & White, M. (1996). Legalization of Physician-Assisted Suicide: Creating a Regulatory Potemkin Village, The. U. Rich. L. Rev., 30(1), 1–84.

Campbell, C. S., & Cox, J. C. (2012). Hospice-assisted death? A study of Oregon hospices on death with dignity. The American Journal of Hospice & Palliative Care, 29(3), 227–35. http://doi.org/10.1177/1049909111418637

Carlos Gaviria Díaz. Constitutional Claim Decision C-239/97 (1997).

Carter, L., Johnson, H., Shoichet, W., Carter, L., Johnson, H., & Shoichet, W. Carter v Canada (2015).

Cohen-Almagor, R., & Hartman, M. G. (2001). The Oregon Death With Dignity Act: Review and Proposals for Improvement. J. Legis., 27(2), 269–298.

133

Dobscha, S. K., Heintz, R. T., Press, N., & Ganzini, L. (2004). Oregon physicians’ responses to requests for assisted suicide: a qualitative study. Journal of Palliative Medicine, 7(3), 451–461. http://doi.org/10.1089/1096621041349374

Fairbairn, G. (1995). Contemplating Suicide: The Language and Ethics of Self-harm. Routledge.

Finlay, I. G., & George, R. (2011). Legal physician-assisted suicide in Oregon and The Netherlands: evidence concerning the impact on patients in vulnerable groups--another perspective on Oregon’s data. Journal of Medical Ethics, 37(3), 171–4. http://doi.org/10.1136/jme.2010.037044

Foley, K., & Hendin, H. (1999). The Oregon Report: Don’t Ask, Don’t Tell. Hastings Center Report, 29(3), 37–42.

Ganzini, L., Goy, E. R., & Dobscha, S. K. (2008). Why Oregon patients request assisted death: family members’ views. Journal of General Internal Medicine, 23(2), 154–7. http://doi.org/10.1007/s11606-007-0476-x

Ganzini, L., Nelson, H., Schmidt, T., Kraemer, D., Delorit, M., & Lee, M. (2000). Physicians’ experiences with the Oregon death with dignity act. New England Journal of Medicine, 342(8), 557–563.

Gevers, S. (1995). Physician Assisted Suicide: New Developments in the Netherlands. Bioethics, 9(3), 309–312.

Groenewoud, J. H., Maas, P. J. van der, Wal, G. van der, Hengeveld, M. W., Tholen, A. J., Schudel, W. J., & Heide, A. van der. (1996). Physician-Assisted Death in Psychiatric Practice in the Netherlands. New, 336(25), 1795–1802.

Haley, K., & Lee, M. (2008). The Oregon Death with Dignity Act: A guidebook for health care providers.

Hayashi, M., & Kitamura, T. (2002). Euthanasia trials in Japan: implications for legal and medical practice. International Journal of Law and Psychiatry, 25(6), 557–71.

Hendin, H., & Foley, K. (2008). Physician-assisted suicide in Oregon: a medical perspective. Issues in Law & Medicine, 24(2), 121–45.

It’s Over, Debbie. (1988). JAMA : The Journal of the American Medical Association, 259(2), 272.

Kass, L. (1989). Neither for love nor money: why doctors must not kill. Public Interest, 94, 25–36.

134

Lewy Guenter. (2011). Assisted death in Europe and America : four regimes and their lessons / Guenter Lewy. Oxford University Press Oxford ; New York.

Lindemann, H., & Verkerk, M. (2008). Ending the Life of a Newborn: The Groningen Protocol. The Hastings Center Report, 38(1), 42–51.

Lopes, G. (2015). Dying with Dignity. Denver, CO: Praeger.

Magnier, M. (2011, March 8). India’s Supreme Court lays out euthanasia guidelines. Los Angeles Times.

Markel, H. (2004). “ I Swear by Apollo ” — On Taking the Hippocratic Oath. New England Journal of Medicine, 350(20), 2026–2029.

McConnell, T. A. (1968). Suicide Ethics in Cross-disciplinary Perspective. Journal of Religion and Health, 7(1), 7–25.

Ministerio de Salud y Proteccion Social. Resolucion 1216, Pub. L. No. Diario Oficial No. 49.489 (2015). Colombia.

Northern Territory of Australia Rights of the Terminally Ill Act 1995. (1995), 1–9.

Parliament of Canada. An Act to amend the Criminal Code and to make related amendments to other Acts (medical assistance in dying) (2016).

Quill, T., Cassel, C., & Meier, D. (1992). Proposed clinical criteria for physician-assisted suicide. New, 327(19), 1380–1384.

Retterstøl, N. (1998). Suicide in a cultural history perspective, part 1. Suicidologi, (2).

Rurup, M. L., Onwuteaka-Philipsen, B. D., Van Der Heide, A., Van Der Wal, G., & Van Der Maas, P. J. (2005). Physicians’ experiences with demented patients with advance euthanasia directives in the Netherlands. Journal of the American Geriatrics Society, 53(7), 1138–1144.

Silverman, M. M., Berman, A. L., Sanddal, N. D., O’carroll, P. W., & Joiner, T. E. (2007). Rebuilding the tower of Babel: a revised nomenclature for the study of suicide and suicidal behaviors. Part 2: Suicide-related ideations, communications, and behaviors. Suicide & Life-Threatening Behavior, 37(3), 264–277. http://doi.org/10.1521/suli.2007.37.3.264

Smith, K. a, Goy, E. R., Harvath, T. a, & Ganzini, L. (2011). Quality of death and dying in patients who request physician-assisted death. Journal of Palliative Medicine, 14(4), 445–50. http://doi.org/10.1089/jpm.2010.0425

135

Termination of Life on Request and Assisted Suicide ( Review Procedures ) Act. (2002). Ethical Perspectives, 9(2–3), 176–181.

Uruguay Penal Code. (n.d.). Retrieved August 29, 2016, from http://www.wipo.int/wipolex/en/text.jsp?file_id=196342 van Delden, J. J. M. (1999). Slippery slopes in flat countries - a response. British Medical Journal, 25, 22–24.

Vermont Legislature. S.77, Pub. L. No. VT LEG #292042 (2013).

Vermont Legislature. VT LEG #290966 v.1 (2015).

Chapter 2

Advance directive - Execution - Specific nutrition/hydration provision - Form - Inclusion in declarant’s medical records - Authority of proxy - Designation based on religious beliefs or tenets (1992).

Akers, S. R. (1977). The Living Will: Already A Practical Alternative. Texas Law Review, 55, 667–718.

American Society of Health-System Pharmacists. (1999). ASHP statement on pharmacist decision-making on assisted suicide. American Journal of Health-System Pharmacy, 56(16), 1661–1664.

Baker, D. J. (2009). The Moral Limits of Consent as a Defense in the Criminal Law. New Criminal Law Review: An International and Interdisciplinary Journal, 12(1), 93–121.

Barilan, Y. M. (2011). Respect for personal autonomy, human dignity, and the problems of self-directedness and botched autonomy. The Journal of Medicine and Philosophy, 36(5), 496–515. http://doi.org/10.1093/jmp/jhr035

Battin, M. P., van der Heide, A., Ganzini, L., van der Wal, G., & Onwuteaka-Philipsen, B. D. (2007). Legal physician-assisted dying in Oregon and the Netherlands: evidence concerning the impact on patients in “vulnerable” groups. Journal of Medical Ethics, 33(10), 591–7. http://doi.org/10.1136/jme.2007.022335

Berlin, I. (1969). Two Concepts of Liberty. In Four Essays on Liberty (pp. 118–172). New York: Oxford University Press.

Borgsteede, S. D., Deliens, L., Graafland-Riedstra, C., Francke, A. L., van der Wal, G., & Willems, D. L. (2007). Communication about euthanasia in general practice: Opinions

136 and experiences of patients and their general practitioners. Patient Education and Counseling, 66(2), 156–161. http://doi.org/10.1016/j.pec.2006.10.006

Breitbart, W., Rosenfeld, B., Pessin, H., Kaim, M., Funesti-esch, J., Galietta, M., … Brescia, R. (2000). Depression, Hopelessness, and Desire for Hastened Death in Terminally Ill Patients With Cancer. JAMA - Journal of the American Medical Association, 284(22), 2907–2911.

Buchbinder, M. (2017). Aid-in-dying laws and the physician’s duty to inform. Journal of Medical Ethics, medethics-2016-103936. http://doi.org/10.1136/medethics-2016-103936

Carson, R. (1992). Washington â€TM s I-119. The Hastings Center Report, 22(2), 7–9.

Connors, A. F. (1995). A Controlled Trial to Improve Care for Seriously Ill Hospitalized Patients. Jama, 274(20), 1591–1599. http://doi.org/10.1001/jama.1995.03530200027032

Ewin, R. E. (1972). What is Wrong With Killing People? The Philosophical Quarterly, 22(87), 126–139.

Feinberg, J. (1986). Harm to Self. Oxford University Press, USA.

Forster, L. E., & Lynn, J. (1988). Predicting Life Span for Applicants to Inpatient Hospice. Archives of Internal Medicine, 148(December), 2540–2543.

France: Declaration of the Right of Man and the Citizen. (1789).

Ganzini, L., Fenn, D., & Lee, M. (1996). Attitudes of Oregon psychiatrists toward physician-assisted suicide. American Journal of Psychiatry, 153(11), 1469–1475.

Ganzini, L., Goy, E. R., & Dobscha, S. K. (2009). Oregonians’ reasons for requesting physician aid in dying. Archives of Internal Medicine, 169(5), 489–92. http://doi.org/10.1001/archinternmed.2008.579

Glare, P., Virik, K., Jones, M., Hudson, M., Eychmuller, S., & Simes, J. (2003). A systematic review of physicians’ survival predictions in terminally ill cancer patients. British Medical Journal, 327(July), 1–6.

Hedberg, K., Hopkins, D., Leman, R., & Kohn, M. (2009). The 10-year experience of Oregon’s Death with Dignity Act: 1998-2007. Journal of Clinical Ethics, 20(2), 124–32.

Hendin, H., & Foley, K. (2008). Physician-assisted suicide in Oregon: a medical perspective. Issues in Law & Medicine, 24(2), 121–45.

Henson, R. (1971). Utilitarianism and the Wrongness of Killing. The Philosophical Review, 80(3), 320–337.

137

Kass, L. (1989). Neither for love nor money: why doctors must not kill. Public Interest, 94, 25–36.

Lynn, J., Harrell, F. E., Cohn, F., Hamel, M., Dawson, N., & Wu, A. W. (1996). Defining the “terminally ill”: insights from SUPPORT. Duquesne Law Review, 35(1), 311–336.

May, T. (2002). Bioethics in a liberal society. Baltimore: Johns Hopkins University Press.

Mill, J. S. (1859). On Liberty. London: Longman, Roberts & Green.

Muskin, P. R. (1998). The Patient-Physician Relationship The Request to Die Role for a Psychodynamic Perspective on Physician-Assisted Suicide. JAMA : The Journal of the American Medical Association, 279(4), 323–328.

Nagi, M. H., Pugh, M. D., & Lazerine, N. G. (1977). Attitudes of Catholic and Protestant Clergy toward Euthanasia. Omega, 8(2). http://doi.org/10.2190/KWRX-87MV-3MEM- BPX9

New York State Task Force on Life and the Law. (1994). Chapter 6 - Crafting Public Policy on Assisted Suicide and Euthanasia. In When Death is Sought: Assisted Suicide and Euthanasia in the Medical Context.

Oregon Health Authority. (2011). Oregon’s Death with Dignity Act: Thirteen Years. CD Summary, 60(6).

Parachini, A. (1989). The California Humane and Dignified Death Initiative. The Hastings Center Report, 19(1), 10–12.

Quill, T., Cassel, C., & Meier, D. (1992). Proposed clinical criteria for physician-assisted suicide. New, 327(19), 1380–1384.

Rae, S. B. (1992). The California Euthanasia Initiative. Linacre Quarterly, 59(4), 5–14. http://doi.org/10.1080/00243639.1992.11878175

Selby, D., Chakraborty, A., Lilien, T., & Stacey, E. (2011). Clinician Accuracy When Estimating Survival Duration : The Role of the Patient ’ s Performance Status and Time- Based Prognostic Categories. Journal of Pain and Symptom Management, 42(4), 578– 588. http://doi.org/10.1016/j.jpainsymman.2011.01.012

138

Snyder, L., & Sulmasy, D. P. (2001). Physician-Assisted Suicide. Annals of Internal Medicine, 135, 209–216. http://doi.org/10.1055/s-0031-1277607

Sullivan, M. D., & Youngner, S. J. (1994). Depression, competence, and the right to refuse lifesaving medical treatment. American Journal of Psychiatry, 151(7), 971–978. http://doi.org/10.1176/ajp.151.7.971

Sullivan, M., Ganzini, L., & Youngner, S. (1998). Should psychiatrists serve as gatekeepers for physician-assisted suicide? The Hastings Center Report, 28(4), 24–31.

U.S. Washington v. Glucksberg (1997). van der Maas, P. J., van Delden, J. J. M., Pijnenborg, L., & Looman, C. W. N. (1991). Euthanasia and other medical decisions concerning the end of life. The Lancet, 338(8768), 669–674. http://doi.org/10.1016/0140-6736(91)91241-L

Werth, J. L., Benjamin, G. A. H., & Farrenkopf, T. (2000). Requests for physician- assisted death: guidelines for assessing mental capacity and impaired judgment. Psychology, Public Policy, and Law : An Official Law Review of the University of Arizona College of Law and the University of Miami School of Law, 6(2), 348–372. http://doi.org/10.1037//1076-8971.6.2.348

Wittwer, H. (2013). The problem of the possible rationality of suicide and the ethics of physician-assisted suicide. International Journal of Law and Psychiatry, 36(5–6), 419–26. http://doi.org/10.1016/j.ijlp.2013.06.009

Young, R. (1979). What is so wrong with killing people? Philosophy, 54(210), 515–528.

Chapter 3

American Medical Association. (1993). Opinion 2 . 211 ‐ Physician ‐ Assisted Suicide.

American Psychological Association. (n.d.). APA Resolution on Assisted Suicide. Retrieved March 29, 2016, from http://www.apa.org/about/policy/assisted-suicide.aspx

Arney, J., & Lewin, B. (2013). Models of Physician–Patient Relationships in Pharmaceutical Direct-to-Consumer Advertising and Consumer Interviews. Qualitative Health Research, 23(7), 937–950. http://doi.org/10.1177/1049732313487801

Baron, C. H., Bergstresser, C., Brock, D. W., Cole, G. F., Dorfman, N. S., Johnson, J. A., … Wanzer, S. H. (1996). A Model State Act to Authorize and Regulate Physician- Assisted Suicide. Harvard Journal on Legislation, 33(1), 1–34.

139

Beltramo, S. (2017). Review of the Current “Right to Die” Statute: Are the Protections Against Undue Influence Sufficient? Contra Costa Lawyer, 30(3), 8–10.

Buna, D. K., & Trouton, K. (2017). Drug Protocols in Medical Assistance in Dying. In Canadian Association of MAiD Assesors and Providers.

California Medical Association removes opposition to physician aid in dying bill. (2015). Retrieved March 29, 2016, from http://www.cmanet.org/news/press- detail/?article=california-medical-association-removes

Campbell, C. S., & Black, M. a. (2014). Dignity, death, and dilemmas: a study of Washington hospices and physician-assisted death. Journal of Pain and Symptom Management, 47(1), 137–53. http://doi.org/10.1016/j.jpainsymman.2013.02.024

Campbell, C. S., & Cox, J. C. (2010). Hospice and physician-assisted death: collaboration, compliance, and complicity. Hastings Center Report, 40(5), 26–35.

Claiborne, W. (1998, April 29). In Oregon, suicide option brings a kinder care. The Washington Post, pp. A1, A12.

Code of Federal Regulations. (n.d.). 42 IV B 418.205.

Colorado Medical Society. (2016). Euthanasia and Physician • Assisted Death. Retrieved June 11, 2017, from http://www.cms.org/about/policies/170.994-euthanasia-and- physician-assisted-suicide

Compassion and Choices. (n.d.). Healthcare Professional Associations Recognize Medical Aid in Dying. Retrieved June 11, 2017, from https://www.compassionandchoices.org/wp-content/uploads/2016/02/FS-Medical-Aid-in- Dying-Healthcare-Professional-Orgs-FINAL-4.6.16-Approved-for-Public- Distribution.pdf de Boer, M. E., Dröes, R.-M., Jonker, C., Eefsting, J. A., & Hertogh, C. M. P. M. (2011). Advance Directives for Euthanasia in Dementia: How Do They Affect Resident Care in Dutch Nursing Homes? Experiences of Physicians and Relatives. Journal of the American Geriatrics Society, 59(6), 989–996. http://doi.org/10.1111/j.1532- 5415.2011.03414.x

140

Emanuel, E. J., Daniels, E. R., Fairclough, D. L., & Clarridge, B. R. (1998). The practice of euthanasia and physician-assisted suicide in the United States: adherence to proposed safeguards and effects on physicians. JAMA : The Journal of the American Medical Association, 280(6), 507–13.

Emanuel, E. J., & Emanuel, L. L. (1992). Four models of the physician-patient relationship. JAMA : The Journal of the American Medical Association, 267(16), 2221– 6.

Emanuel, L. L. (1998). Facing requests for physician-assisted suicide: toward a practical and principled clinical skill set. JAMA : The Journal of the American Medical Association, 280(7), 643–7.

Fore, A. R. (2016). OMA Board Votes on Opioids, Drones, Aid in Dying. Retrieved June 11, 2017, from http://www.theoma.org/print/5552

Ganzini, L., Fenn, D. S., Lee, M. A., Heintz, R. T., & Bloom, J. D. (1996). Attitudes of Oregon Psychiatrists Toward Physician-Assisted Suicide. American Journal of Psychiatry, 153(11), 1469–1475.

Ganzini, L., Goy, E. R., & Dobscha, S. K. (2008). Prevalence of depression and anxiety in patients requesting physicians’ aid in dying: cross sectional survey. British Medical Journal, 337. http://doi.org/10.1136/bmj.a1682

Ganzini, L., Nelson, H. D., Schmidt, T. A., Kraemer, D. F., Delorit, M. A., & Lee, M. A. (2000). Physicians’ experiences with the Oregon Death with Dignity Act. The New England Journal of Medicine, 342(8), 557–63. http://doi.org/10.1056/NEJM200002243420806

Greene, S. (2016, February). Without medical aid-in-dying, some patients choose to die violently. Sheryl Randall was one of them. Colorado Indepedent.

Gurung, P., Lukens, J. R., & Kanneganti, T. (2016). Advanced cancer as a risk for major depressive episodes. Psychooncology, 21(3), 193–201. http://doi.org/10.1016/j.molmed.2014.11.008.Mitochondria

Haley, K., & Lee, M. (2008). The Oregon Death with Dignity Act: A guidebook for health care providers.

141

Hamilton, N. G. (2004). Oregon’s Culture of Silence. In K. M. Foley & H. Hendin (Eds.), The Case Against Assisted Suicide: For the Right to End-of-Life Care (pp. 175–191). Johns Hopkins University Press.

Hendin, H., & Foley, K. (2008). Physician-assisted suicide in Oregon: a medical perspective. Issues in Law & Medicine, 24(2), 121–45.

Hendin, H., Rutenfrans, C., & Zylicz, Z. (1997). Physician-assisted suicide and euthanasia in the Netherlands. Lessons from the Dutch. JAMA : The Journal of the American Medical Association, 277(21), 1720–1722.

Honea, T. (2011, April 17). His final choice: Reflections on life, death, and a lethal dose of Seconal. Skagit Valley Herald.

Hurst, S. a, & Mauron, A. (2003). Assisted suicide and euthanasia in Switzerland: allowing a role for non-physicians. BMJ (Clinical Research Ed.), 326(7383), 271–3. http://doi.org/10.1136/bmj.326.7383.271

Johnson, G. L., & Ramaprasad, A. (2000). Patient-Physician Relationships in the Information Age. Marketing Health Services, 20(1), 20–27.

Lichtenthal, W. G., Nilsson, M., Zhang, B., Trice, E. D., Kissane, D. W., Breitbart, W., & Prigerson, H. G. (2009). Do rates of mental disorders and existential distress among advanced stage cancer patients increase as death approaches? Psycho-Oncology, 18(1), 50–61. http://doi.org/10.1002/pon.1371

Meier, D. E., Emmons, C. a, Wallenstein, S., Quill, T., Morrison, R. S., & Cassel, C. K. (1998). A national survey of physician-assisted suicide and euthanasia in the United States. The New England Journal of Medicine, 338(17), 1193–201. http://doi.org/10.1056/NEJM199804233381706

Miller, L. L., Harvath, T. a, Ganzini, L., Goy, E. R., Delorit, M. a, & Jackson, A. (2004). Attitudes and experiences of Oregon hospice nurses and social workers regarding assisted suicide. Palliative Medicine, 18(8), 685–691. http://doi.org/10.1191/0269216304pm961oa

Norton, E. M., & Miller, P. J. (2012). What Their Terms of Living and Dying Might Be: Hospice Social Workers Discuss Oregon’s Death with Dignity Act. Journal of Social Work in End-Of-Life & Palliative Care, 8(January 2015), 249–264. http://doi.org/10.1080/15524256.2012.708295

Oregon Public Health Division. (2016). Oregon Death with Dignity Act Data summary 2016.

142

Quill, T., Cassel, C., & Meier, D. (1992). Proposed clinical criteria for physician-assisted suicide. New, 327(19), 1380–1384.

Quill, T. E., & Cassel, C. K. (2003). Professional organizations’ position statements on physician-assisted suicide: A case for studied neutrality. Annals of Internal Medicine, 138(3), 208–211.

Quill, T. E., & Cassel, C. K. (2004). Nonabandonment: A central obligation for physicians. Physician-Assisted Dying: The Case for Palliative Care and Patient Choice, 122(5), 368–374.

Richardson, P. (2011). How to Die in Oregon. Clearcut Productions.

Sleeboom, M. (2003). The Limitations of the Dutch Concept of Euthanasia. Eubios Journal of Asian and International Bioethics, 13, 20–25.

Snyder, L., & Sulmasy, D. P. (2001). Physician-Assisted Suicide. Annals of Internal Medicine, 135, 209–216. http://doi.org/10.1055/s-0031-1277607

Sullivan, M., Ganzini, L., & Youngner, S. (1998). Should psychiatrists serve as gatekeepers for physician-assisted suicide? The Hastings Center Report, 28(4), 24–31.

Van Zandt, L. (2016). Op-Ed: My aunt’s struggle with assisted suicide: There was death, but not enough dignity. LA Times, 2015–2018.

Vermont Alliance for Ethical Health Care v Hoser. (2016).

Vermont Medical Society. (2003). VMS Policy: Physician-Assisted Suicide. Retrieved March 29, 2016, from http://www.vtmd.org/sites/all/themes/vms/documents/policies/2003/PASpolicy.pdf

Washington State Department of Health. (2015). Washington State Department of Health 2014 Death with Dignity Act Report.

Washington State Department of Health. (2016). Washington State Department of Health 2015 Death with Dignity Act Report, 1–12.

143

West, J. S. (2009). The Last Goodnights: Assisting My Parents with Their Suicides : a Memoir. Counterpoint.

Ziegler, S. J., & Bosshard, G. (2007). Role of non-governmental organisations in physician assisted suicide. BMJ (Clinical Research Ed.), 334(7588), 295–8. http://doi.org/10.1136/bmj.39100.417072.BE

Chapter 4

An Act respecting end-of-life care, Pub. L. No. RSQ c S 32.0001 (2014). Canada.

Baezner-Sailer, E. M. (2008). Physician Assisted Suicide in Switzerland: A Personal Report. In D. Birnbacher & E. Dahl (Eds.), Giving Death a Helping Hand (pp. 141–149).

Blenkinsop, P. (2015, January 6). Doctors block Belgian murderer’s euthanasia. Reuters.

Burns, J. F. (2009, July 14). With Help , Conductor and Wife Ended Lives. New York Review of Books.

Canadian Medical Association. (n.d.). Principles-based Recommendations for a Canadian Approach to Assisted Dying.

Canadian Medical Association. (2014). Euthanasia and Assisted Death (Update 2014). Retrieved March 29, 2016, from https://www.cma.ca/Assets/assets- library/document/en/advocacy/EOL/cma-policy-euthanasia-assisted-death-updated-2014- e.pdf

Canadian Medical Association. (2015). A Canadian Approach to Assisted Dying: A CMA Member Dialogue Summary Report. Retrieved August 11, 2016, from https://www.cma.ca/Assets/assets-library/document/en/advocacy/Canadian-Approach- Assisted-Dying-e.pdf

Carlos Gaviria Díaz. Constitutional Claim Decision C-239/97 (1997).

Chantal Perrot. (2017). Cross Country Check-up Toronto and the GTA MAiD in the GTA. In CAMAP Conference.

Clark, C. C., & Kimsma, G. K. (2004). “Medical friendships” in assisted dying. Cambridge Quarterly of Healthcare Ethics : CQ : The International Journal of Healthcare Ethics Committees, 13(1), 61–7.

Cohen-Almagori, R. (2002). The Chabot Case: Analysis and Account of Dutch Perspectives. Medical Law International, 5(3), 141–159. http://doi.org/10.1177/096853320200500301

144

Cohen, J., Van Wesemael, Y., Smets, T., Bilsen, J., Onwuteaka-Philipsen, B., Distelmans, W., & Deliens, L. (2014). Nationwide survey to evaluate the decision- making process in euthanasia requests in Belgium: do specifically trained 2nd physicians improve quality of consultation? BMC Health Services Research, 14, 307. http://doi.org/10.1186/1472-6963-14-307

Colombian Ministry of Health and Social Protection. Resolution 1216 of 2015 (2015).

Glanfield, E. (2016, October 12). Dutch government plans to legalise assisted suicide for those who feel they have “completed life” but are not necessarily terminally ill in controversial move. Daily Mail.

Griffiths, J. (2008). Physician-Assisted Suicide in the Netherlands and Belgium. In D. Birnbacher & E. Dahl (Eds.), Giving Death a Helping Hand: Physician-Assisted Suicide and Public Policy. An International Perspective (pp. 77–86).

Hayashi, M., & Kitamura, T. (2002). Euthanasia trials in Japan: implications for legal and medical practice. International Journal of Law and Psychiatry, 25(6), 557–71.

Jesse A Pewarchuk. (2017). Vancouver Island. In CAMAP Conference.

Kimsma, G. K. (2012). Assessment of Unbearable and Hopeless Suffering in Evaluating a Request to End Life. In S. J. Youngner & G. K. Kimsma (Eds.), Physician-Assisted Death in Perspective: Assessing the Dutch Experience. New York: Cambridge University Press.

Kimsma, G. K. (2012). Euthanasia Consultants. In S. J. Youngner & G. K. Kimsma (Eds.), Physician-Assisted Death in Perspective: Assessing the Dutch Experience (pp. 181–191). New York, NY: Cambridge University Press.

Kimsma, G. K. (2012). Euthanasia Consultants Professional Assessment Before Euthanasia and Physician-Assisted Suicide in the Netherlands. In S. J. Youngner & G. K. Kimsma (Eds.), Physician-Assisted Death in Perspective: Assessing the Dutch Experience. New York: Cambridge University Press.

Kimsma, G. K., & Leeuwen, E. van. (2012). Reviews after the Act: The Role and Work of Regional Euthanasia Review Committees. In S. Youngner & G. K. Kimsma (Eds.), Physician-Assisted Death in Perspective: Assessing the Dutch Experience (pp. 192–201). New York, NY: Cambridge University Press.

Lewy Guenter. (2011). Assisted death in Europe and America : four regimes and their lessons / Guenter Lewy. Oxford University Press Oxford ; New York.

Lindemann, H., & Verkerk, M. (2008). Ending the Life of a Newborn: The Groningen Protocol. The Hastings Center Report, 38(1), 42–51.

145

Maguire, D. C. (1974). Death, legal and illegal. Atlantic Monthly, 233(2), 72–85.

Medical Assistance in Dying. (n.d.). Retrieved from http://www2.gov.bc.ca/gov/content/health/accessing-health-care/home-community- care/care-options-and-cost/end-of-life-care/medical-assistance-in-dying

Northern Territory of Australia Rights of the Terminally Ill Act 1995. (1995), 1–9.

Parliament, D. Termination of Life on Request and Assisted Suicide (Review Procedures) Act, Pub. L. No. 26 691, no 137 (2001). The Netherlands.

Pereira, J. (2011). Legalizing euthanasia or assisted suicide: the illusion of safeguards and controls. Current Oncology (Toronto, Ont.), 18(2), e38-45.

Regional Euthanasia Review Committees. (2002). Annual Report 2002.

Regional Euthanasia Review Committees. (2015). Annual Report 2015. http://doi.org/10.1017/CBO9781107415324.004

Rurup, M. (2012). Being “Weary of Life” as Cause for Seeking Euthanasia or Physician- Assisted Suicide. In Physician-Assisted Death in Perspective: Assessing the Dutch Experience (pp. 247–262). http://doi.org/10.1017/CBO9780511843976.023

Snijdewind, M. C., Willems, D. L., Deliens, L., Onwuteaka-Philipsen, B. D., & Chambaere, K. (2015). A Study of the First Year of the End-of-Life Clinic for Physician- Assisted Dying in the Netherlands. JAMA Internal Medicine, 175(10), 1633. http://doi.org/10.1001/jamainternmed.2015.3978

Swiss Criminal Code, Art. 115. (2014), 1937(I).

The Belgian Act on Euthanasia of May, 28th 2002 (unofficial translation). (2002). Ethical Perspectives / Catholic University of Leuven ; European Centre for Christian Ethics, 9, 182–188. http://doi.org/10.2143/EP.9.2.503856

Tom Mendelsohn. (2013, October 1). Belgian man dies by euthanasia after failed sex change operation. Independent.

Tomkins, S. (2017). Federal Monitoring of Medical Assistance in Dying. In CAMAP Conference.

146 van der Maas, P. J., van Delden, J. J. M., Pijnenborg, L., & Looman, C. W. N. (1991). Euthanasia and other medical decisions concerning the end of life. The Lancet, 338(8768), 669–674. http://doi.org/10.1016/0140-6736(91)91241-L

Van Wesemael, Y., Cohen, J., Onwuteaka-Philipsen, B. D., Bilsen, J., Deliens, L., & Wesemael, Y. Van. (2009). Establishing specialized health services for professional consultation in euthanasia: experiences in the Netherlands and Belgium. BMC Health Services Research, 9, 220. http://doi.org/10.1186/1472-6963-9-220

Walsh, D. (2017). Alberta Approach - Medical Assistance in Dying. In CAMAP Conference.

Waterfield, B. (2013, January 13). Belgian identical twins in unique mercy killing. Telegraph.

Wiebe, K. (2017). MAID in Manitoba. In CAMAP Conference.

Yoshida, L. (2017). Nova Scotia. In CAMAP Conference.

Chapter 5

Campbell, C. S., & Cox, J. C. (2010). Hospice and physician-assisted death: collaboration, compliance, and complicity. Hastings Center Report, 40(5), 26–35.

Fleming, D. A. (2015). The Moral Agency of Physician Organizations: Meeting obligations to advocate for patients and the public. Annals of Internal Medicine, 163(12), 918–921. http://doi.org/10.7326/M15-2527

Frye, J., & Youngner, S. J. (2016). A Call for a Patient-Centered Response to Legalized Assisted Dying. Annals of Internal Medicine, (September), 1–3. http://doi.org/10.7326/M16-1319

147

Green, S. (2017). Case Study: What’s Your Opinion? CAMAP Newsletter, 1(January), 7–8.

Haley, K., & Lee, M. (2008). The Oregon Death with Dignity Act: A guidebook for health care providers.

Hanratty, B., Hibbert, D., Mair, F., May, C., Ward, C., Corcoran, G., … Litva, A. (2006). Doctors’ understanding of palliative care. Palliative Medicine, 20, 493–497.

Hendin, H., & Foley, K. (2008). Physician-assisted suicide in Oregon: a medical perspective. Issues in Law & Medicine, 24(2), 121–45.

Karlamangla, S. (2017, March 19). The return of doctor house calls: Convenient, but at what cost? Los Angeles Times.

Lee, B. C. (2003). Compassion in Dying: Stories of Dignity and Choice. NewSage Press.

Mcgorty, E. K., & Bornstein, B. H. (2003). Barriers to physicians’ decisions to discuss hospice: insights gained from the United States hospice model. Journal of Evaluation in Clinical Practice, 9(3), 363–372.

Northern Territory of Australia Rights of the Terminally Ill Act 1995. (1995), 1–9.

Oregon Public Health Division. (2016). Oregon Death with Dignity Act Data summary 2016.

Regional Euthanasia Review Committees. (2015). Annual Report 2015. http://doi.org/10.1017/CBO9781107415324.004

Richardson, P. (2011). How to Die in Oregon. Clearcut Productions.

Rosenberg, T. (2017, September 27). Reviving House Calls by Doctors. The New York Times.

Rutenberg, B. J. I. M., & Calmes, J. (2009, August 13). False “ Death Panel ” Rumor Has Some Familiar Roots. The New York Times.

Sullivan, M., Ganzini, L., & Youngner, S. (1998). Should psychiatrists serve as gatekeepers for physician-assisted suicide? The Hastings Center Report, 28(4), 24–31.

Van Zandt, L. (2016). Op-Ed: My aunt’s struggle with assisted suicide: There was death, but not enough dignity. LA Times, 2015–2018.

148

Washington State Department of Health. (2016). Washington State Department of Health 2015 Death with Dignity Act Report, 1–12.

Chapter 6

California Department of Public Health. (2017). 2016 DATA REPORT.

Ganzini, L., & Edgar Dahl. (2008). Physician-Assisted Suicide in Oregon. In D. Birnbacher & E. Dahl (Eds.), Giving Death a Helping Hand: Physician-Assested Suicide and Public Policy. An International Perspective (pp. 67–75).

Leonard, K. (2016, March 21). Californians Can Choose to Die – With the Help of Taxpayers. US News & World Report.

Oregon Public Health Division. (2016). Oregon Death with Dignity Act Data summary 2016.

Petrillo, L. A., Dzeng, E., & Smith, A. K. (2016). California’s End of Life Option Act: Opportunities and Challenges Ahead. Journal of General Internal Medicine, 31(8), 828– 829. http://doi.org/10.1007/s11606-016-3713-3

Peyser, A. (2016, October 24). Terminally ill mom denied treatment coverage — but gets suicide drug approved. New York Post.

Richardson, P. (2011). How to Die in Oregon. Clearcut Productions.

Washington State Department of Health. (2016). Washington State Department of Health 2015 Death with Dignity Act Report, 1–12.