Implications of the National Legalization of Physician-Assisted Death

ABSTRACT

Physician-assisted death (PAD) remains a highly controversial practice within the United States, which has so far forgone national legislation on the issue. This paper aims to provide a brief and selective overview of the ethical considerations associated with PAD, and to explore the validity and practical implications of arguments both in favor of and against PAD through a study of current scholarship on the issue. Specific ethical principles analyzed below include topics of autonomy, justice, coercion, and discrimination. Additionally, the potential for the establishment of a national PAD law is explored within the context of the ethical and practical challenges and benefits that such a law might entail. Broad criteria for the formulation of PAD legislation are described, and the implications of national legalization for practice within the field of palliative medicine are analyzed.

BACKGROUND

The term “physician-assisted suicide” often invites doubt and repugnance.1 Perhaps it conjures up visions of the infamous Dr. Jack Kevorkian, who illegally helped over one hundred individuals diagnosed with bodily diseases to take their own lives.2 Perhaps it calls to mind individuals such as Barbara Wagner, who was denied state financial coverage for chemotherapy treatment but was offered funds for an assisted death procedure, or Kate Cheney, an elderly

1 Helene Starks et al., "Physician Aid-In-Dying," University of Washington, last modified 2013, accessed March 12, 2015, https://depts.washington.edu/bioethx/topics/pad.html.; Timothy E. Quill and Jane Greenlaw, "Physician- Assisted Death," in From Birth to Death and Bench to Clinic: The Hastings Center Bioethics Briefing Book for Journalists, Policymakers, and Campaigns, ed. Mary Crowley (Garrison, NY: Hastings Center, 2008), accessed March 12, 2015, http://www.thehastingscenter.org/Publications/BriefingBook/Detail.aspx?id=2202. 2 "Jack Kevorkian: How He Made Controversial History," BBC News, June 3, 2011, World, accessed March 12, 2015, http://www.bbc.co.uk/news/world-us-canada-13649381.; "Who Was Dr. Jack Kevorkian?," ProCon.org, accessed March 12, 2015, http://euthanasia.procon.org/view.answers.php?questionID=000161.; Starks et al., "Physician Aid-In-Dying," University of Washington.; Quill and Greenlaw, "Physician-Assisted Death," in From Birth to Death. woman whose daughter seems to have pressured her to choose the option of assisted death.3

Perhaps it leads some to doubt the effectiveness of end-of-life care in the United States, or to infer manipulation of vulnerable groups.

Each of these examples demonstrates the ethical issues and challenges associated with a practice that is often and perhaps more appropriately termed “physician aid-in-dying” or “physician- assisted death” (PAD) in the United States today. To begin with, PAD must be distinguished from other last-resort options and practices, both legal and illegal. In the United States, PAD refers to “a practice in which a physician provides a competent, terminally-ill patient with a prescription for a lethal dosage of medication, upon the patient’s request, which the patient intends to use to end his or her own life.”4 PAD differs, in essence, from euthanasia, in which the physician directly administers the lethal medication or injection.5 Euthanasia, whether voluntary or involuntary (i.e. whether requested by the patient or conducted without the patient’s express approval) is currently illegal under state and federal law.6 PAD also differs from the legal and generally ethically permissible practices of the withdrawal of life-sustaining treatments and the prescription of medication dosages that may bring a patient nearer to death.7 Both depend on the

3 Marilyn Golden and Tyler Zoanni, "Killing Us Softly: The Dangers of Legalizing Assisted Suicide," Disability and Health Journal 3, no. 1 (2010): 19, 21-22, PDF.; "Personal Stories (Assisted Suicide)," Wisconsin Right to Life, accessed March 12, 2015, http://wrtl.org/assisted-suicide/personal-stories-assisted-suicide/. 4 Starks et al., "Physician Aid-In-Dying," University of Washington. 5 Starks et al., "Physician Aid-In-Dying," University of Washington.; Quill and Greenlaw, "Physician-Assisted Death," in From Birth to Death 6 Quill and Greenlaw, "Physician-Assisted Death," in From Birth to Death.; Starks et al., "Physician Aid-In- Dying," University of Washington.; "State-by-State Guide to Physician-Assisted Suicide," ProCon.org, last modified April 17, 2014, accessed March 12, 2015, http://euthanasia.procon.org/view.resource.php?resourceID=000132. 7 D. Harris, B. Richard, and P. Khanna, "Assisted Dying: The Ongoing Debate," Postgraduate Medical Journal 82, no. 970 (2006), accessed March 12, 2015, doi:10.1136/pgmj.2006.047530.; Golden and Zoanni, "Killing Us Softly: The Dangers," 17.; Starks et al., "Physician Aid-In-Dying," University of Washington.; Timothy E. Quill, "Physician-Assisted Death in the United States: Are the Existing 'Last Resorts' Enough?," The Hastings Center Report 38, no. 5 (2008), http://www.thehastingscenter.org/publications/hcr/detail.aspx?id=2232. informed consent of a competent adult patient, as does the rarer and perhaps more debatable practice of VSED (voluntarily stopping eating and drinking).8 Finally, PAD can be distinguished from the contentious but still less controversial practice of palliative sedation, in which a terminally ill patient is medicated to the point of unconsciousness in order to relieve severe pain and suffering.9 Unlike the other last-resort options listed above, PAD has not garnered professional and ethical acceptance within the medical field.10

Currently, there are no national laws concerning PAD; rather, the decision to declare this practice legal or illegal has been left entirely up to states. Only Oregon, Washington, and Vermont (in order of enactment) have passed legislation to make PAD legal.11 In the states of Montana and

New Mexico, court decisions have legalized the practice.12 All other states have either expressly declared it to be illegal or have not addressed the issue.13 Moreover, state autonomy has been protected by the Supreme Court.14 In its 2006 ruling on Gonzales v. Oregon, for example, the

Court declared that the Attorney General of the United States does not have the power to prohibit the practice of PAD in individual states. It also upheld state-specific bans on PAD in the

Washington v. Glucksburg and Vacco v. Quill rulings of 1997.15

8 Starks et al., "Physician Aid-In-Dying," University of Washington.; Quill, "Physician-Assisted Death in the United." 9 Golden and Zoanni, "Killing Us Softly: The Dangers," 17.; Starks et al., "Physician Aid-In-Dying," University of Washington.; Quill, "Physician-Assisted Death in the United." 10 Quill and Greenlaw, "Physician-Assisted Death," in From Birth to Death; Quill, "Physician-Assisted Death in the United.” 11 "State-by-State Guide to Physician-Assisted," ProCon.org. 12 "Euthanasia and Assisted Suicide Laws around the World," The Guardian, July 17, 2014, accessed March 30, 2015, http://www.theguardian.com/society/2014/jul/17/euthanasia-assisted-suicide-laws-world. 13 "State-by-State Guide to Physician-Assisted," ProCon.org. 14 Starks et al., "Physician Aid-In-Dying," University of Washington.; "State-by-State Guide to Physician- Assisted," ProCon.org. 15 Ibid.

ETHICAL ARGUMENTS

There exist convincing and thoughtful arguments both for and against the practice and its legalization. One of the most universally cited arguments in favor of PAD centers on the concept of patient autonomy.16 Autonomy within this particular context refers to the idea that only the patient (and perhaps his or her relatives) has the inherent right to decide the method and timing of his or her death.17 A rejection of government intervention (in this case, in the form of a ban on assisted death) is sometimes associated with this belief.18 Autonomy essentially implies the existence of a “right to die,” originally meant to apply to voluntary withdrawal of life-sustaining procedures.19 Proponents of PAD might argue that the reasoning given by patients who contemplate PAD demonstrates the paramount importance of preserving patient autonomy.

Certain studies have shown that the decision to engage in PAD often stems from a patient’s considerations of current and expected quality of life.20 In considerations of quality of life, it is

16 Golden and Zoanni, "Killing Us Softly: The Dangers," 20.; Harris, Richard, and Khanna, "Assisted Dying: The Ongoing.”; Hendry et al., "Why Do We Want," 19-20.; Starks et al., "Physician Aid-In-Dying," University of Washington.; "Top Ten Pros and Cons: Should Euthanasia or Physician-Assisted Suicide Be Legal?," ProCon.org, last modified December 13, 2013, accessed March 12, 2015, http://euthanasia.procon.org/view.resource.php? resourceID=000126.; Quill and Greenlaw, "Physician-Assisted Death," in From Birth to Death. 17 Hendry et al., "Why Do We Want," 19-20.; Starks et al., "Physician Aid-In-Dying," University of Washington.; "Top Ten Pros and Cons," ProCon.org.; Quill and Greenlaw, "Physician-Assisted Death," in From Birth to Death. 18 "Top Ten Pros and Cons," ProCon.org. 19 "Top Ten Pros and Cons," ProCon.org.; Robert M. Walker, "Physician-Assisted Suicide: The Legal Slippery Slope," Cancer Control: Journal of the Moffitt Cancer Center 8, no. 1 (2001): 29, PDF. 20 Maggie Hendry et al., "Why Do We Want the Right to Die? A Systematic Review of the International Literature on the Views of Patients, Carers and the Public on Assisted Dying," Palliative Medicine 27, no. 1 (2012): 19, PDF.; Quill, "Physician-Assisted Death in the United," important to distinguish between physical pain and the broader concept of suffering, which can include psychological and other components.21

Participants in an international array of studies and surveys were consistently found to cite loss of independence and erosion of a personal sense of identity due to illness as a reason to opt for assisted death.22 The inability to perform routine and necessary functions was seen as particularly devastating to quality of life.23 Such evidence might support the argument that considerations of quality of life are subjective and can be decided only by the patient. Reasoning derived from autonomy is further reinforced by the principle of justice, under which similar cases are to be treated alike.24 Proponents of PAD have argued that just as competent, terminally ill individuals should (and do) have the right to refuse or withdraw life-sustaining procedures, such individuals should also have the right to elect to end their own lives. 25 However, The Supreme Court, in its

Vacco v. Quill ruling, legally differentiated between the above two practices.26

Critics of PAD in general and of the principle of autonomy in particular sometimes state that patient choice of PAD indicates or results from a lack of knowledge of other, more accepted last- resort options and/or a dearth of high-quality health services or palliative care.27 Thus, PAD does not really represent an active, independent “choice;” rather, it testifies to unfavorable or coercive

21 Starks et al., "Physician Aid-In-Dying," University of Washington. 22 Hendry et al., "Why Do We Want," 19. 23 Ibid 24 Starks et al., "Physician Aid-In-Dying," University of Washington. 25 "Legal Precedents: Landmark Euthanasia," ProCon.org.; Starks et al., "Physician Aid-In-Dying," University of Washington. 26 Kelly Green, "Physician-Assisted Suicide and Euthanasia: Safeguarding against the 'Slippery Slope' - The Netherlands versus the United States," Indiana International and Comparative Law Review 13, no. 2 (2003): 655, PDF; Starks et al., "Physician Aid-In-Dying," University of Washington. 27 Quill and Greenlaw, "Physician-Assisted Death," in From Birth to Death; Quill, "Physician-Assisted Death in the United”; Hendry et al., "Why Do We Want," 19, 21; Golden and Zoanni, "Killing Us Softly: The Dangers," 18- 20; Marcia Grant et al., "Current Status of Palliative Care, Education, and Research," CA: A Cancer Journal for Clinicians 59, no. 5 (2009): 329-330, accessed March 12, 2015, doi:10.3322/caac.20032. circumstances. Such arguments seem to be supported by several studies. Palliative care refers to holistic efforts to improve a patient’s quality of life through an emphasis on patient autonomy and the alleviation of suffering at the “physical, emotional, social, and spiritual” levels.28 It focuses on the management of pain and other aspects of suffering rather than active treatment for an illness.29 The current status of palliative care indicates its limitations: according to one study that focuses on the accessibility of such care to cancer patients, palliative treatment must be offered and implemented earlier in the course of the disease than is currently the case in order to improve patient and family communication and knowledge regarding end-of-life goals.30 It is lack of appropriate communication, caused by an unwillingness or inability to discuss death and stop active treatment for the disease, that delays the transition to palliative and hospice care and restricts the scope of such care.31 For example, the abovementioned study reported that “the median length of stay on hospice in 2005 was [only] 26 days”; meanwhile, “53% of all patients die in the hospital,” though “90%...say they would like to die at home.”32 An additional report by Dr. Timothy E. Quill corroborates these findings: it claims that hospice enrollment is deterred by the fact that it represents a deliberate transition away from active treatment of an illness.33

Furthermore, high expenses inhibit a majority of hospice programs from solving this problem through the pursuit of active treatment alongside pain management policies.34 Quill’s report also indicates other obstacles to effective palliative care: lack of appropriate compensation for palliative caregivers, a shortage of such caregivers, and lack of effective training for ordinary

28 Constance Dahlin, ed., Clinical Practice Guidelines for Quality Palliative Care, publication no. 3rd edition (Pittsburgh, PA: National Consensus Project for Quality Palliative Care, 2013), 9, PDF. 29 Dahlin, Clinical Practice Guidelines for Quality, 9; Grant et al., "Current Status of Palliative," 327-328, 329. 30 Grant et al., "Current Status of Palliative," 329-330. 31 Grant et al., "Current Status of Palliative," 329. 32 Ibid. 33 Quill, "Physician-Assisted Death in the United.” 34 Ibid clinicians who treat terminally ill patients.35

The clear limitations of palliative care as it is currently implemented reinforce the concern that lack of effective end-of-life care may drive PAD and reduce patient choice by replacing such care with voluntary death as an effective and viable option. Certain studies indicate a more specific link between lack of access to high-quality palliative and general health care and the desire for or prevalence of PAD.36 The same study that attests to considerations of the quality of life as a driving motivation for the election of PAD (see above) also validates the experiences of patients who had initially opted for PAD, but had later changed their minds after receiving appropriate pain-management care.37 Moreover, a journal article authored by Golden and Zoanni on the dangers of PAD found that in Oregon, the state with the longest history of legalized PAD, the process of legalization and enactment was (at least in the initial years after legalization) associated with cuts in funding for Medicaid programs pertaining specifically to terminally ill individuals and individuals with disabilities.38 Such a correlation might suggest that PAD has, to some extent, become a “substitute” for expensive, high-quality care options. Furthermore, both of the above studies discuss the gaps in patient knowledge regarding appropriate alternatives to

PAD: the first alludes to the tendency of physicians to “[avoid] discussing the likely progress of disease and care options in the last days of life, or [to give] incorrect advice,” while the second refers to the lack of a “requirement that… alternatives actually be made available to patients.”39

Could PAD be considered an ethical end-of-life option given its apparent connection to a lack of

35 Ibid 36 Golden and Zoanni, "Killing Us Softly: The Dangers," 18-19, 22; Hendry et al., "Why Do We Want," 19, 21 37 Hendry et al., "Why Do We Want," 19. 38 Golden and Zoanni, "Killing Us Softly: The Dangers," 18-19 39 Hendry et al., "Why Do We Want," 21; Golden and Zoanni, "Killing Us Softly: The Dangers," 22. quality and accessibility in palliative care? The answer is affirmative. In fact, contrary evidence suggests that PAD is neither the cause nor the effect of poor-quality or limited palliative care services.40 In an above-mentioned report, Quill states that in Oregon, the first state to pass its

Death with Dignity Act, the years following the passage of PAD legislation have been associated with steadily expanding palliative care access and quality: “Oregon appears to be among the leaders in comparison to other states in virtually all aspects of palliative and end-of-life care.”41

Evidence for such a claim is significant: the same report indicates that palliative and end-of-life training programs for physicians in Oregon are strong in attendance, and 2006 study found that around 90% of the Oregon patients who had chosen and enacted PAD had been enrolled in hospice.42 Furthermore, the state of Oregon has developed a systematic approach towards discovering and recording individual patients’ end-of-life wishes. The above data would seem to suggest that the availability and use of PAD is not necessarily correlated with a lack of access to effective palliative care, a conclusion reinforced by the fact that the rate of PAD in Oregon remained quite constant at one out of every thousand deaths for the first ten years after the 1997 enactment of the Death with Dignity Law.43

In addition to correlating lack of palliative care with PAD, certain opponents of the practice argue that the danger for coercion—whether perpetrated by circumstance, relatives, or physicians

— is “especially strong for socially and economically disadvantaged people who have less access to medical resources and who already find themselves discriminated against by the health care system.”44 Elderly individuals and individuals who are disabled are frequently cited as two

40 Quill, "Physician-Assisted Death in the United.” 41 Ibid 42 Quill, "Physician-Assisted Death in the United.”; 43 Quill, "Physician-Assisted Death in the United.” 44 Golden and Zoanni, "Killing Us Softly: The Dangers," 18. of the most vulnerable populations within the context of PAD.45 Such individuals already face prejudice in a society that actively values physical ability and youth, and tend to have less financial flexibility than other groups.46 A existing sense of stigma, along with a desire not to

“trouble” or “burden” relatives, may lead elderly or disabled individuals to choose PAD over end-of-life care, particularly if such individuals are actively pressured by family members.47 In fact, Golden and Zoanni found that the percentage of PAD cases driven by the desire not to serve as a “burden” rose, in Oregon, from 12% in 1998 to 47% in 2007.48

The above argument represents a valid and legitimate concern, given the history of abuse and discrimination associated with medical treatment and experimentation as it pertains to historically marginalized groups, including individuals of color and individuals with physical and mentally disability. However, while the argument for abuse within the context of PAD is compelling, it seems to lack clear evidence. For example, a study assessing the effect of PAD on potentially vulnerable groups—including disabled individuals, terminally ill individuals, and the elderly— in both Oregon and the Netherlands found that the rates of PAD in both places do not support the conclusion that such groups are more susceptible to PAD than other groups.49

Furthermore, it is possible that the national standardization of PAD law and the implementation of national monitoring mechanisms of PAD practice across states might, if appropriately formulated, reduce the risk of abuse and coercion of potentially vulnerable populations.

45 Golden and Zoanni, "Killing Us Softly: The Dangers," 17, 18, 20; Green, "Physician-Assisted Suicide and Euthanasia," 647-649. 46 Golden and Zoanni, "Killing Us Softly: The Dangers," 17, 18, 20; Green, "Physician-Assisted Suicide and Euthanasia," 648. 47 Golden and Zoanni, "Killing Us Softly: The Dangers," 17, 18, 20, 21-22; Green, "Physician-Assisted Suicide and Euthanasia," 647-649. 48 Golden and Zoanni, "Killing Us Softly: The Dangers," 20. 49 Margaret P. Battin et al., "Legal Physician-Assisted Dying in Oregon and the Netherlands: Evidence concerning the Impact on Patients in 'Vulnerable' Groups," abstract, Journal of Medical Ethics 33, no. 10 (2007): [Page #], accessed March 12, 2015, doi:10.1136/jme.2007.022335. IMPLICATIONS FOR NATIONAL LEGALIZATION

As stated briefly above, national standardization of PAD law could solve a number of challenges, advanced by both critics and proponents of PAD, associated with the practice. Golden and

Zoanni point to several flaws in the structure and implementation of Oregon’s Death With

Dignity Act.50 They claim, for example, that the Oregon Public Health Division (OPHD), does not adequately monitor legal noncompliance, whether in the form of a failure on the part of physicians to report prescriptions associated with PAD or, more alarmingly, in the form of PAD cases that occur outside of the law.51 The authors also state that several gaps exist in the information-gathering procedures employed by the OPHD.52 Information on PAD is obtained exclusively from physicians who prescribe the medication associated with PAD and not from other relevant parties, including relatives, physicians who refuse to provide the prescription, and the patients themselves.53 Such a limitation, coupled with a failure to investigate cases of abuse under PAD law and an annual destruction of collected data by the OPHD itself, does not allow for an accurate evaluation of the effectiveness of the law itself.54

Each of the above concerns could potentially be addressed by the enactment of a national PAD law that would establish strong mechanisms for the monitoring of PAD cases and records within states, as well as impose and enforce appropriate penalties for lack of compliance (whether on the part of physicians, monitoring officials, or other relevant stakeholders) with such

50 Golden and Zoanni, "Killing Us Softly: The Dangers," 24. 51 Ibid. 52 Golden and Zoanni, "Killing Us Softly: The Dangers," 24-25. 53 Ibid. 54 Ibid. mechanisms and the general law. National legalization and enforcement of PAD might also diminish and perhaps eventually eliminate the illegal or secret practice of PAD. Though current statistics for such a practice are not available, it has been estimated to have caused 1 to 2% of deaths in the state of Oregon in the 1990s (presumably before the official enactment of the Death

With Dignity Act).55

In spite of the potential benefits that it may bring, PAD still poses a number of ethical and practical dilemmas, only a few of which are explored above. Thus, its legalization at the national level is not to be advocated for or taken lightly. It is essential that any form of legalization be accompanied by strict, enforceable, and regularly monitored safeguards that eliminate the possibility of abuse or coercion of patients by systemic or familial pressures.56 Furthermore, national legislation related to PAD must emphasize the importance, availability, and precedence of high-quality palliative care.57 It is crucial that patients be informed of and encouraged to pursue appropriate treatment and care options before and above alternatives (including PAD and other last-resort options) that hasten death. In other words, PAD must be legalized only as a last resort; it must never be deemed or implemented as a substitute for holistic and appropriate end- of-life care.58

The above will require a continued commitment to the development of palliative care. The expansion of this field has so far been evidenced by its recognition as a medical subspecialty by the Accreditation Council for Graduate Medical Education; the establishment of its services in

55 Golden and Zoanni, "Killing Us Softly: The Dangers," 18-19, 20; Quill, "Physician-Assisted Death in the United.” 56 Golden and Zoanni, "Killing Us Softly: The Dangers." 57 Quill, "Physician-Assisted Death in the United.” 58 Golden and Zoanni, "Killing Us Softly: The Dangers," 18-19, 20, 22; Quill, "Physician-Assisted Death in the United”; such settings as hospitals, medical centers, and homes; and its inclusion in assessments and education programs for physicians, nurses, social workers, and hospitals.59 Access to palliative care must continue to expand alongside the legalization and implementation of PAD practice, as the universal provision of high quality care and its tendency to reduce healthcare (ex. Medicare) costs have the potential to reduce coercion associated with both limited health options for patients and health service restrictions due to state medical expenses within the context of

PAD.60 According to Dr. Quill, the expansion of palliative access to “all seriously ill patients” will require an integration of hospice care with what he terms “disease directed therapy,” or active treatment of disease. 61 Thus, there is still much work to done in the field of palliative medicine in order to allow for the safe and appropriate implementation of PAD.62

Provisions to ensure that both physicians and patients are well informed of all existing last-resort options—all options that hasten the time of death—must be included in any future PAD law.63

Such options, as explained above, might include withdrawal of life-sustaining treatments, the prescription of medication dosages that may hasten death, palliative sedation, and VESD. It is only when these options are fully, clearly, and accurately explained that a patient may choose from such alternatives if—and only if—he or she deems high-quality palliative care to be insufficient to address his or her suffering. Again, it might be argued that such an insufficiency will never arise if end-of-life care is truly of effective and appropriate quality. However, as Quill

59 Dahlin, Clinical Practice Guidelines for Quality, 6-7; Quill, "Physician-Assisted Death in the United.” 60 Dahlin, Clinical Practice Guidelines for Quality, 6; Quill, "Physician-Assisted Death in the United”; Golden and Zoanni, "Killing Us Softly: The Dangers," 18-19, 20, 22. 61 Quill, "Physician-Assisted Death in the United”; Golden and Zoanni, "Killing Us Softly: The Dangers," 18-19, 20, 22; 62 Dahlin, Clinical Practice Guidelines for Quality; Quill and Greenlaw, "Physician-Assisted Death," in From Birth to Death ; Quill, "Physician-Assisted Death in the United.” 63 Quill and Greenlaw, "Physician-Assisted Death," in From Birth to Death; Quill, "Physician-Assisted Death in the United.” states, “there will always be a small percentage of cases where symptoms become intractable despite skillful efforts to help.”64 He also claims that “when there is no life support to stop, the medical profession tends to be judgmental of both the physician and the patient about not trying hard enough with standard palliative measures.”65 Again, the argument advanced is that in which only the patient can ultimately determine the level of suffering or pain that is acceptable to him or her, even within the context of excellent palliative care.66

It is also important to note that the existence of other last-resort options does not render PAD unnecessary; according to Quill, PAD may be deemed preferable to other options under certain circumstances. A patient may not, for example, be dependent on life-sustaining treatments; in such a case, the withdrawal of treatment is inapplicable.67 Moreover, PAD is not as strenuous as

VSED, and preserves the autonomy of the patient to a greater extent than palliative sedation.68 In general, then, PAD can be considered an additional last resort option with significant potential advantages and benefits.

64 Quill and Greenlaw, "Physician-Assisted Death," in From Birth to Death 65 Ibid. 66 Quill, "Physician-Assisted Death in the United.” 67 Ibid. 68 Ibid. Bibliography

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