Assisted Suicide & Euthanasia | White Paper ..., Study notes of Law

Download Assisted Suicide & Euthanasia | White Paper ... and more Study notes Law in PDF only on Docsity! Assisted Suicide & Euthanasia | White Paper WorldYouthAlliance By Nadja Wolfe World Youth Alliance Director of Advocacy and Hrvoje Vargić World Youth Alliance Director of Partnerships Reviewed By Nikolas T. Nikas, J.D. and Timothy Devos, M.D., Ph.D. Professor of Medicine, Catholic University Leuven Hematologist, University Hospitals Leuven, Belgium September 2019 World Youth Alliance | 2 I. Introduction Increased life expectancy and ageing populations have made end-of-life care a pressing need, particularly in developed countries, where these trends are strongest. Medical advancements now cure once untreatable diseases, and can prolong life much longer than before for those with illnesses that remain incurable. Yet these advances cannot prevent ageing itelf, or the limitations it causes, such as decreased mobility, loss of sight and hearing, dementia, or pain. The best way to support patients approaching the end of their lives is now a matter of intense debate. The “right to die” movement claims that the answer is to allow medical professionals to hasten death, directly through euthanasia, or indirectly, through physician assisted suicide (PAS). It asserts that there is a right to choose the manner of one’s death, even as part of the right to life, and as a human right. This, proponents insist, is necessary for “death with dignity.” Although many countries still ban the practices, there has been a significant increase in the number of jurisdictions allowing the practices in recent years. This white paper will critically examine the “right to die” and what is required to respect the dignity of each person in end-of-life care in light of law, policy, and practice, with a special concern for the protection of the vulnerable. First, it will discuss assisted suicide and euthanasia within international human rights law, and then provide an overview of existing national and subnational laws permitting the practice. Next it will discuss the primary arguments for assisted suicide, namely autonomy and suffering, and how those arguments fall short, before moving on to concerns about disability prejudice, the risk of coercion, and the effects of the practice on the medical profession. Finally, the paper will discuss how best to care for those approaching the end of their lives in a way that respects their dignity: improved physician-patient relationships in the end-of-life care context, palliative care, and psychosocial support. Definitions For the purposes of this paper, euthanasia is the “intentional killing by act or omission of a dependent human being for his or her alleged benefit.”1 Physician assisted suicide (PAS) means “physician participation in advising or providing, but not directly administering, the means or information enabling a person to intentionally end his or her life (e.g., ingesting a lethal dose of medication prescribed for that purpose).”2 PAS differs from euthanasia in that the patient is the one administering the drug to him or herself, while in euthanasia a different person (usually a doctor) is the one who administers the lethal drug. Euthanasia, by act or omission, as well as PAS, share the common intent “to cause or hasten the patient’s death.”3 The intent also distinguishes euthanasia and PAS from stopping what is sometimes characterized as “overly aggressive therapy[, which is the] exaggeratedly stubborn struggle against inevitable death.” 4 Sometimes prolonging treatment is disproportionately burdensome on the patient, with no prospect of improvement. Such futile treatment can be withdrawn at the request of a patient. There is a long-standing medical and legal tradition supporting the rights of patients to refuse unwanted treatment, even though this 1 EUR. PARL. ASS. RES. 1859, ¶ 5, Council of Europe (Jan. 25, 2012). 2 Lois Snyder Sulmasy & Paul S. Mueller, Ethics and the Legalization of Physician-Assisted Suicide: An American College of Physicians Position Paper, 167 ANNALS INTERNAL MED. 576, 578 (2017). 3 GIACOMO PERICO, PROBLEMI DI ETICA SANITARIA 138 (1992). 4 ETIENNE MONTERO, EUROPEAN INSTITUTE OF BIOETHICS, ETHICAL POINTS OF REFERENCE IN CARING FOR PEOPLE NEARING THE END OF LIFE 2 (2010) available at https://www.ieb-eib.org/fr/document/ethical-points-in- caring-for-people-nearing-end-of-life-260.html. World Youth Alliance | 5 it is influential as a statement of the committee’s interpretation of the right to life. As the committee has now accepted that a right to die may be part of the right to life, it is unlikely to examine whether assisted suicide poses unique risks or problems, regardless of the concerns raised by various international and national bodies. These concerns include the state’s interest in protecting life, preventing abuse and coercion, particularly of the vulnerable, and maintaining the integrity of the medical profession. These interests were cited in several of the court cases discussed below, and are also addressed in subsequent sections. The issues of assisted suicide and euthanasia have come before the European Court of Human Rights several times. The court has generally refused to overrule practices in Member States related to the end of life, leaving matters, including bans on assisted suicide and withdrawal of sustenance, to national legislatures and procedures. The case of Pretty v. United Kingdom involves the fullest examination to date of whether a right to die exists under European human rights law. In that case, a British woman with motor neuron disease challenged the United Kingdom’s prohibition on assisted suicide, arguing that it violated her rights under the European Convention of Human Rights (ECHR). 21 If her disease had not physically prevented her, she could have ended her life herself, but because of her inability to do so, she challenged the criminal provisions which prevented her husband from ending her life for her.22 Pretty argued that the ECHR article 2 right to life included “a right to choose whether or not to go on living… not life itself.”23 The court flatly rejected the idea that there is a negative right (to die) implied in article 2.24 The court also rejected the assertion that failure to allow her aid in ending her life constituted torture, inhuman, or degrading treatment under ECHR article 3, which has been understood to ban direct ill-treatment by authorities.25 While acknowledging that quality of life and end of life concerns, including choosing the manner of one’s death, could fall within the right to private and family life under ECHR article 8,26 the court ultimately held that the UK government was within its authority to ban assisted suicide based on its interest in protecting the vulnerable and that therefore the interference was justified. 27 The court also rejected the idea that a belief in assisted suicide for herself constituted a belief within the scope of the ECHR article 9 protections for freedom of religion or belief.28 Finally, the court was not persuaded that Pretty’s inability to end her own life meant that a difference in legal treatment of suicide (not a crime under UK law) and assisted suicide (a crime) constituted unlawful or even avoidable discrimination, or that the aim of the ban (protecting the vulnerable) could be preserved while carving out an exception for cases like hers.29 21 Pretty v. United Kingdom, No. 2346/02 §§ 7, 32, Eur. Ct. H.R., Apr. 29, 2000. 22 Id. §§ 8-10. 23 Id. § 35. 24 Id. §§ 39-40. 25 Id. §§ 52-53. 26 Id. §§ 65, 67. 27 Id. §§ 74, 78. 28 Id. §§ 82-83. 29 Id. § 88. The court ultimately held that the UK government was within its authority to ban assisted suicide based on its interest in protecting the vulnerable and that therefore [prohibiting the practice] was justified. World Youth Alliance | 6 The European Court of Human Rights has had several rulings since then. Despite its previous caution, in Haas v. Switzerland, the court suggested that its Pretty decision had found that the right to respect for private life does include the choice to avoid an undignified death, as long as the person ending their life was of sound mind.30 Even so, the court upheld a law requiring a prescription for a lethal dose of medication, recognizing the state’s interest in protecting life and preventing abuse.31 In a subsequent case, Koch v. Germany, a man brought a case because his wife was denied access to a lethal dose of narcotics to end her life where they lived in Germany.32 His wife, who was paralyzed, eventually endured a challenging transport to Switzerland, where she ended her life with the assistance of the pro-assisted suicide organization Dignitas.33 Despite its earlier statement in Haas, in Koch the court recognized a wide “margin of appreciation” in the application of Article 8 rights with respect to assisted suicide, noting that only four member states allowed the practice and it did not enjoy consensus among states parties to the treaty.34 It required Germany to thoroughly examine the claim domestically,35 but not necessarily to permit the requested action. Gross v. Switzerland, in which a plaintiff sued the state for not being prescribed a lethal medication, led to a further development of this principle, when the court held that a lack of clear guidelines regarding the provision of lethal prescriptions for those without terminal diseases did violate her Article 8 right to respect for private and family life.36 However, the judgment was rendered by a divided court (four judges in favor, three against), and included a strong dissent from the interpretation of Article 8.37 The decision was voided when it emerged that the plaintiff had committed suicide by lethal prescription a year and a half before the original decision was handed down and concealed her death with the help of a spiritual advisor in order for her case to continue.38 These cases do not produce a firm rule so much as the application of principles of law to particular legal frameworks. While the European Court of Human Rights has not expressly held that allowing assisted suicide violates rights under the European Convention on Human Rights, it has found state interests in the protection of life and prevention of abuse to be compelling reasons justifying bans on the practice. In the Swiss cases, given the legality of assisted suicide, it has both upheld restrictions on lethal medications and, in the voided decision, suggested that legal requirements have to be clear so that those seeking assistance to end their lives understand the requirements to do so. This disparate treatment suggests that the court is applying the provisions and principles of the Convention in line with the nature and purposes of the laws of each country, rather than assessing whether European human rights law 30 Haas v. Switzerland, No. 31322/07, §§ 50-51, Eur. Ct. H.R., Jan. 6, 2011. 31 Id. §§ 56-58. 32 Koch v. Germany, No. 497/09 §§ 9, 11, Eur. Ct. H.R., Dec. 12, 2012. 33 Id. § 12. 34 Id. §§ 69-70. 35 Id. § 71. 36 Gross v. Switzerland, No. 67810/10 §§ 67-69, Eur. Ct. H.R., May 14, 2013 (2d Section), voided by Gross v. Switzerland, No. 67810/10, Eur. Ct. H.R., Sept. 30, 2014 (Grand Chamber). 37 See Gross v. Switzerland, No. 67810/10 Dissent §§ 6-9, Eur. Ct. H.R., May 14, 2013 (2d Section) (JJ. Raimondi, Jočiene, and Karakaş, dissenting), voided by Gross v. Switzerland, No. 67810/10, Eur. Ct. H.R., Sept. 30, 2014 (Grand Chamber). 38 Gross v. Switzerland, No. 67810/10 §§ 29-34, 37, Eur. Ct. H.R., Sept. 30, 2014 (Grand Chamber). The European Court of Human Rights has … found state interests in the protection of life and prevention of abuse compelling reasons justifying bans on the practice. World Youth Alliance | 7 requires or bans assisted suicide, limiting itself in recognition of the margin of appreciation on areas of law lacking consensus. Just as international law does not require assisted suicide, there is also no customary law giving the right to die or end one’s life as one likes. Customary international law arises from the practices of states acting out of a sense of legal obligation (opinio juris).39 There are two key elements of customary law. The first involves questions such as whether the rule has been followed, and how consistent and how long the practice has been in place.40 The second element requires an assessment of whether a practice has been accepted as law—indicating that states believe it is an obligation, rather than simply a beneficial option.41 It is the harder element to establish of the two. As the vast majority of countries do not allow the practice, general practice does not exist. This also implies that states do not believe that they have an obligation to permit it. Moreover, in the Pretty case discussed above, the European Court of Human Rights rejected the argument that its acceptance of assisted suicide in one country meant that laws banning the practice in another country had to be overturned.42 B. National and subnational laws permitting euthanasia and/or assisted suicide Switzerland decriminalized the practice of assisted suicide when done without “selfish motives” in 1918,43 although it failed to create a clear legislative framework around the practice.44 In 2001, the Netherlands became the first country to adopt national legislation legalizing assisted suicide and euthanasia, after tolerating the practice for some years.45 In 1997, Colombia decriminalized both PAS and euthanasia by Constitutional Court decision, although the government failed to provide regulations for some time.46 The U.S. state of Oregon began allowing PAS for adults in 1997,47 following a U.S. Supreme Court decision 39 BEDERMAN, supra note 9, at 33. 40 Id. 41 Id. at 33, 36. 42 Pretty, No. 2346/02 § 41. 43 Saima A. Hurst & Alex Mauron, Assisted suicide and euthanasia in Switzerland: allowing a role for non- physicians, 326 BMJ 271, 271 (2003). As the title suggests, although doctors may participate, such as through lethal medications, people without medical training can also help others’ suicide, and organizations exist for this purpose. See, e.g., Exit at a Glance, EXIT, available at https://exit.ch/en/who-is-exit/. 44 See Gross, No. 67810/10 §§ 67-69, Eur. Ct. H.R., May 14, 2013 (2d Section), voided by Gross v. Switzerland, No. 67810/10, Eur. Ct. H.R., Sept. 30, 2014 (Grand Chamber). 45 Jacqui Wise, Netherlands, first country to legalise euthanasia, 79 BULL. WORLD HEALTH ORG. 580, 580 (2001). 46 Corte Constitucional [C.C.], mayo 20, 1997, Sentencia C-239/97, §§ II(C)(3), III available at http://www.corteconstitucional.gov.co/relatoria/1997/c%2D239%2D97.htm. 47 William Claiborne, ‘Death With Dignity’ Measure May Make Oregon National Battlefield, Washington Post, June 27, 1997, at A19. Oregon’s legislature passed a bill in 2019 amending its act to facilitate assisted suicide through means besides swallowing, which some argue blurs the line between assisted suicide and euthanasia as it could require more active involvement from a second person to administer the lethal medication. Markian Hawryluk, Bill reopens debate over assisted suicide in Oregon, BEND BULLETIN (Apr. 27, 2019), https://www.bendbulletin.com/localstate/7117862-151/bill-reopens-debate-over-assisted-suicide-in-oregon. As of writing, the Oregon legislature has considered expanding the means of assisted suicide to include injections for patients unable to swallow, which some consider a gradual inching towards euthanasia as it requires greater participation from medical professionals to set up the lethal dose. Kristian Foden-Vencil, Oregon Considers Expanding Its Death With Dignity Law, OR. PUB. BROADCASTING (May 10, 2019), https://www.opb.org/news/article/oregon-assisted-suicide-death-with-dignity-expansion-bill/. World Youth Alliance | 10 Within human rights law, “dignity” has a precise meaning: the value an individual human being has simply by virtue of being human.65 This value is intrinsic, inherent, and universal; 66 it does not decrease or increase in proportion to any personal characteristic, experience, or action. That includes manners of dying: no one loses his dignity because he has become reliant on others for care, or experiences suffering. To suggest otherwise suggests that human life does not have objective value, which would undermine not only laws banning assisted suicide, but the foundation of human rights itself. “Death with dignity” and its variations are popular slogans among PAS advocates, even though the terms are inherently vague.67 This phrase pits autonomy against an unknown hour and manner of death, and suggest that the suffering and pain experienced by many at the end of life is undignified and therefore should be avoided. Numerous PAS advocacy organizations have framed this as a “right to die with dignity,” suggesting a legal obligation despite most courts finding that no right to die, in any manner, exists.68 This concept is inherently problematic, regardless of whether euthanasia is included in the concept of “dying with dignity” or not. It suggests that there could equally be a situation in which a person could die “without dignity”. One scholar summarizes it thus: “Death with dignity, either alone or with others, is certainly preferable to death without dignity, whether it be lingering or rather sudden.”69 This view is radically mistaken, because a human person is never “without” his or her dignity. This confusion in semantics suggests that the elderly, suffering, disabled or terminally ill may be deprived of their dignity, which undermines the fundamental equality of all persons. No matter how difficult the end of life may be, no manner of death can be without dignity because no person is ever without dignity. That dignity must be respected throughout life, including in the provision of care for the dying. Equally wrong are the terms of “dignified death” and “dignity of death.” Death is the moment in which human life ends. Death itself, considered biologically, is “the degradation of the biological dimension of the human being, nothing dignified.”70 In all the other aspects (psychological, emotional, social and mental) death also indicates the disintegration of the human being. Since life is a fundamental value for a person (there can be no non-living person; a dead body is a corpse and not a dead person) and death signifies the moment in which this fundamental value ceases to exist, there is nothing of dignity in the death per se. Thus, concepts of “dignified death” and the “dignity of death” should be abandoned. Rather, the focus should be on respect for dignity in end-of-life care. The process of dying can be more or less in accordance with human dignity, and thus can be more or less respectful of human dignity. Society should aim for end-of-life care which respects human 65 See Universal Declaration of Human Rights, G.A. Res. 217A, Preamble, art. 1, U.N. GAOR, 3d Sess., 1st plen. Mtg., U.N. Doc. A/810 (Dec. 12, 1948). 66 Id. at Preamble (“Whereas recognition of the inherent dignity and of the equal and inalienable rights of all members of the human family...”). 67 KEVIN YUILL, ASSISTED SUICIDE: THE LIBERAL, HUMANIST CASE AGAINST LEGALIZATION 13-15 (2015). 68 GORSUCH, supra note 8, at 45 (2006). 69 Jordan J. Paust, The Human Right to Die With Dignity: A Policy-Oriented Essay, 17 HUM. RTS. Q. 463 (1995). 70 Valentin Pozaić, Palliative care and the human dignity of patients, 5 GLAS. PUL. BOLN. 153, 154 (2009). No one loses his dignity because he has become reliant on others for care, or experiences suffering. To suggest otherwise suggests that human life does not have objective value, which would undermine not only laws banning assisted suicide, but the foundation of human rights itself. World Youth Alliance | 11 dignity for those who are dying, so that this care is understood as a process of dying in accordance with human dignity—a process of dying worthy of the human person. “Death with dignity” arguments typically present as arguments related to choosing the manner of one’s own death (autonomy) and avoiding suffering. Deeper examinations of each aspect of arguments for “death with dignity” follow. A. Autonomy One of the most common arguments in favor of legalizing euthanasia and assisted suicide is the argument from autonomy and self-determination. According to this argument, the mentally competent and terminally ill adults should have the right to decide how and when to end their lives. This argument suggests that the State should protect that right by not interfering with and prohibiting others from interfering with one’s autonomous decision. However, what the argument essentially misses is that legalizing euthanasia and assisted suicide is not a solitary action, but one that requires a doctor’s participation in the suicide and social acceptance of the act. “Euthanasia is not a private matter of self- determination. It is an act that requires two people to make it possible, and a complicit society to make it acceptable.”71 Self-determination in the case of euthanasia can only be achieved “by the moral and physical assistance of another. Euthanasia is thus no longer a matter only of self-determination, but of a mutual, social decision between two people.”72 The autonomy argument is clearly expressed in the decision of the United States Supreme Court in Planned Parenthood v. Casey: “At the heart of liberty is the right to define one's own concept of existence, of meaning, of the universe, and of the mystery of human life.”73 Applying this principle in Compassion in Dying v. Washington, the federal district court for the state of Washington reasoned that “the decision of a terminally ill person to end his or her life involves the most intimate and personal choices a person may make in a lifetime and constitutes a choice central to personal dignity and autonomy.”74 Individual autonomy, however important it may be, is always limited by the protection of the fundamental goods of society. One such good is the life of a human being, which should be always protected; therefore, the intentional taking of the life of another should be always prohibited. The principle of the inviolability of life is a fundamental principle of common law,75 and this principle has been enshrined in numerous human rights conventions.76 It is grounded in an “understanding of each human being as having an intrinsic and inviolable dignity. The essence of the principle is the prohibition on the intentional taking of human life, intention used in its ordinary sense of aim or purpose.”77 The Canadian House of Lords Select Committee on Medical Ethics described the prohibition on intentional killing as “the cornerstone of law and of social relationships” which “protects each one of us 71 Daniel Callahan, When Self-Determination Runs Amok, 22 THE HASTINGS CENTER REP. 52, 53 (1992). 72 Id. at 52. 73 Planned Parenthood v. Casey, 505 U.S. 833, 851 (1992) 74 Compassion in Dying v. Washington, 850 F. Supp. 1454, 1459-60 (Wash. 1994). 75 John Keown, A Right to Voluntary Euthanasia? Confusion in Canada in Carter, 28 NOTRE DAME J.L. ETHICS & PUB. POL'Y 1, 5 (2014) [hereinafter Keown, Voluntary Euthanasia] 76 See ICCPR, supra note 11, art. 6; European Convention on Human Rights art. 2, opened for signature Nov. 4, 1950, E.T.S. No. 5, 213 U.N.T.S. 221; American Convention on Human Rights art. 4, Nov. 21, 1969, 1144 U.N.T.S. 143; African Charter on Human and Peoples’ Rights art. 4, opened for signature June 27, 1981, 1520 U.N.T.S. 217. 77 Keown, Voluntary Euthanasia, supra note 75, at 5. World Youth Alliance | 12 impartially, embodying the belief that all are equal.”78 As numerous court decisions indicate, the State has a legitimate interest in preserving life.79 England’s Court of Appeal has observed that some cases present an apparent conflict between the patient’s interest in “self-determination” and society’s interest in “upholding the concept that all human life is sacred.”80 While acknowledging that the right of self- determination is of “paramount” importance, the court held that in cases where doubt exists about whether the individual is actually exercising that right, “that doubt fails to be resolved in favour of the preservation of life for if the individual is to override the public interest, [she] must do so in clear terms.”81 Similarly, the European Court of Human Rights stressed that “the concept that ‘everyone’s life shall be protected by law’ enjoins the state not only to refrain from taking life ‘intentionally’ but, further, to take appropriate steps to safeguard life.”82 In the Case Pretty v. United Kingdom, the court underlined that it has always placed “consistent emphasis . . . [on] the obligation of the State to protect life.”83 Moreover, the patient’s autonomy, which proponents of the legalization of euthanasia and PAS claim these practices protect, is in fact illusory, because the final decision rests in the hands of the doctor, not the patient. “The physician decides when the patient is suffering intolerably enough to use the last resort. The physician controls the availability of the medication and its dose. The physician makes a judgment about the quality of the patient’s life and suffering and what is good for the patient.”84 Thus, as some authors have argued, making physicians the arbiters of assisted suicide and euthanasia is a return to one of the most severe forms of paternalism, not a victory for patient autonomy.85 Therefore, the justification of voluntary euthanasia rests fundamentally not on the patient's autonomous request but on the doctor's judgment that the request is justified because the patient no longer has a life “worth” living. If a doctor can make this judgment in relation to an autonomous patient, he can, logically, make it in relation to an incompetent patient. Moreover, if death is a ‘benefit’ for competent patients suffering certain conditions, why should it be denied incompetent patients suffering from the same conditions?86 Numerous cases of non-voluntary and involuntary euthanasia worldwide testify to this. In the Netherlands by 1990, there were 1,000 cases (0.8% of all deaths) where physicians administered a drug hastening the end of life “without an explicit request of the 78 Id. at 6. 79 GORSUCH, supra note 8, at 10. 80 Id. at 187. 81 Id. 82 L.C.B. v. United Kingdom, App. No. 23413/94 § 36, Eur. Ct. H.R., June 9, 1998; see generally Ass’n of Parents v. United Kingdom, No. 7154/75, Eur. Ct. H.R., July 12, 1978. 83 Pretty, No. 2346/02 § 39. 84 Edmund D. Pellegrino, Compassion Is Not Enough, in THE CASE AGAINST ASSISTED SUICIDE 48 (Kathleen Foley & Herbert Hendin, eds., 2002). 85 Id. 86 John Keown, Euthanasia in the Netherlands: Sliding down the Slippery Slope, 9 NOTRE DAME J. L., ETHICS & PUB. POL'Y 407, 408 (2002) (emphasis in original). Making physicians the arbiters of assisted suicide and euthanasia is a return to one of the most severe forms of paternalism, not a victory for patient autonomy. World Youth Alliance | 15 request to “ensure that the listener understood the depth of their suffering.”110 When these conversations took place, healthcare providers were able to address key concerns and ensure better patient care, with the result that none of the patients in that report ended their lives.111 Reports from Oregon and the Netherlands suggest that effective palliative care interventions can lead to a significant number of patients changing their minds about assisted suicide.112 Addressing these gaps through physician education, improved pain management, and holistic palliative care should take priority over acts that deliberately end lives. Physical suffering can also cause or contribute to mental and emotional distress. Patients’ desires to live can fluctuate over time, impacted by factors like depression, anxiety, and physical symptoms.113 Patients requesting PAS often cite loss of autonomy and fear of being a burden, not only physical pain,114 which be reflect or intensify their psycho-social concerns. Depression, rather than pain, is related to patients stockpiling medications to end their lives.115 Older patients and patients with serious illnesses experience depression and anxiety, which can affect their medical decision-making.116 And clinical depression and psychological distress in patients correlates with their support for PAS.117 Although symptoms of serious illness and serious depression can overlap, research has shown that there are ways to evaluate patient depression, including simply asking if they often felt depressed.118 These conditions can sometimes be organic in nature (caused by injury or disease), but even those that are purely psychiatric suggest that the issue of competent decision-making deserves additional scrutiny.119 Researchers also found a stronger correlation between hopelessness and a desire for suicide than even depression and suicide.120 Proponents of assisted suicide often portray it as compassionate towards those experiencing suffering.121 This reflects an emotivist ethic: that emotions and sympathy are the key factor in determining whether an action is moral.122 Suffering can provoke feelings of empathy—and a desire to end that suffering, even if it means helping to end the life of the sufferer.123 Yet emotions can provoke both good and bad responses, and varied responses among different people; they do not prove themselves morally correct simply by virtue of being a natural response, but must be examined with reason.124 110 Id. at 300. 111 Id. at 300-01. 112 Linda Ganzini et al., Physicians’ Experiences with the Death with Dignity Act, 342 NEW ENG. J. MED. 557, 560, 562 (2000). In Oregon, nearly half of patients who received substantive interventions changed their minds. Id. at 560. 113 Harvey M. Chochinov & Leonard Schwartz, Depression and the Will to Life in the Psychological Landscape of Terminally Ill Patients, in THE CASE AGAINST ASSISTED SUICIDE at 267 (Kathleen Foley & Herbert Hendin, eds. 2002). 114 OREGON 2018 DATA SUMMARY, supra note 105, at 10; DISEASE CONTROL & HEALTH STATISTICS DIVISION, WASH. STATE DEPT. HEALTH 2017 DEATH WITH DIGNITY ACT REPORT 8 (2018) [hereinafter WASH. 2017 REPORT], available at https://www.doh.wa.gov/portals/1/Documents/Pubs/422-109- DeathWithDignityAct2017.pdf; GUENTER LEWY, ASSISTED DEATH IN EUROPE AND AMERICA: FOUR REGIMES AND THEIR LESSONS 33-34 (2017). 115 Chochinov & Schwartz, supra note 113, at 269. 116 Foley, Compassionate Care, supra note 106, at 299. 117 Chochinov & Schwartz, supra note 113, at 263. 118 Id. at 265-66. 119 Id. at 266. 120 Id. at 268. 121 YUILL, supra note 67, at 41. 122 Pellegrino, supra note 84, at 43. 123 Id. at 43-44. 124 Id. at 44-45. Assisted suicide requires little of society, least of all sharing in the suffering of our most vulnerable at the final moments, when they end their lives by themselves. World Youth Alliance | 16 The compassion offered by PAS collapses under deeper examination. The word “compassion” comes from the Latin verb meaning “to suffer with.”125 Yet assisted suicide requires little of society, least of all sharing in the suffering of our most vulnerable at the final moments, when they end their lives by themselves.126 This in turn points to a more fundamental problem with using this supposed compassion for suffering as a guide: its resistance to limits.127 If feeling compassion for suffering is a reasonable basis to permit assisted suicide, why should it only apply to physical pain among mentally competent, terminally ill adults?128 If ending suffering is inherently a moral good, should euthanasia be allowed? Does it even need to be requested? At least one assisted suicide critic has characterized the argument for PAS from compassion as essentially a projection of supporters’ future fears onto those suffering now, and one that lacks courage, because if it were true it would tend to support euthanasia, even without request, not assisted suicide.129 As he writes, “What kind of compassionate person refuses to take action herself and instead simply says to the suffering person: ‘It’s your choice’? An act of compassion is an action waiting around to see what a suffering person wants.”130 Though advocates deride the “slippery slope,” or simply refuse to engage it,131 there is cause for concern. The Netherlands now euthanizes disabled and severely ill infants on the grounds that ending their lives is more compassionate than the speculated suffering they will endure.132 Middle-aged deaf twin brothers in Belgium requested and received assisted suicide upon learning that they were going blind, rather than be unable to see each other or placed in institutional care.133 Colombia issued rules for euthanasia for adults, and, within two years, for children, even as young as six.134 In a case that made headlines, a rape victim suffering mental health effects from her trauma ended her life with a lethal prescription in the Netherlands.135 If ending suffering is a moral imperative, it becomes difficult to limit it, or draw a bright line between which forms of suffering are bad enough to warrant helping someone end his life and which are not. 125 Id. at 42. 126 YUILL, supra note 67, at 41. Yuill calls this “a compassion of the most cowardly variety that prefers to hand the gun to the suffering individual rather than take responsibility for the action itself.” Id. 127 YUILL, supra note 67, at 46; Pellegrino, supra note 84, at 46. 128 YUILL, supra note 67, at 46; Pellegrino, supra note 84, at 46. 129 YUILL, supra note 67, at 46. 130 Id. 131 Benjamin T. Jones, Singer and Fisher preach to their flocks in euthanasia debate, THE CONVERSATION (Boston), Aug. 13, 2015, available at https://theconversation.com/singer-and-fisher-preach-to-their-flocks-in- euthanasia-debate-45880 (“For much of the debate, the two did not address the other’s arguments. Singer kept a small target, advocating voluntary euthanasia only for competent adults with a terminal illness.”). Singer’s decision not to engage the argument that assisted suicide laws tend to loosen over time could be considered, as the article puts it, remaining focused on what he supports, or as a failure to engage a central claim of assisted suicide opponents: that the narrow circumstances he expressed his support for assisted suicide are where the laws begin, but not where they end. The entire debate may be viewed online on the YouTube channel of the Sydney University Catholic Society, which co-sponsored the event (https://www.youtube.com/watch?v=kZLs5L_Iknc). 132 Netherlands grapples with euthanasia of babies, NBC NEWS, Nov. 20, 2004, available at http://www.nbcnews.com/id/6621588/ns/health-childrens_health/t/netherlands-grapples-euthanasia- babies/#.W_I_yi3MywA. 133 Michelle Castillo, Report: Twin deaf brothers going blind undergo euthanasia, CBS NEWS, Jan. 14, 2013, available at https://www.cbsnews.com/news/report-twin-deaf-brothers-going-blind-undergo-euthanasia/. 134 Ministerio de Salud y Protección Social, Res. No. 0825 de 2018, art. 3 paragrafo. 135 Matt Payton, Sex abuse victim in her 20s allowed by doctors to choose euthanasia due to 'incurable' PTSD, INDEPENDENT (London), May 11, 2016, available at https://www.independent.co.uk/news/world/europe/sex- abuse-victim-in-her-20s-allowed-by-dutch-doctors-to-undergo-euthanasia-due-to-severe-ptsd-a7023666.html. World Youth Alliance | 17 Compassion alone cannot justify an action; it must be evaluated by reason with the good of the person in mind.136 It also demands something, both of individuals and society: actions to alleviate suffering where it can be alleviated, and to accompany the suffering. Legalizing assisted suicide will not meet the deepest needs, medical or psycho-social, of those suffering. Despite its emotional appeal, PAS represents at its most basic level the abandonment of the vulnerable to their suffering, not compassion for it, and must therefore be rejected. IV. Assisted Suicide and Euthanasia: Concerns and Risks A. Assisted suicide and disability discrimination Disability rights groups have actively opposed assisted suicide.137 Some, such as Not Dead Yet and local affiliates, focus specifically on opposing assisted suicide from a disability rights perspective.138 For these activists, assisted suicide is a clear threat to their health and lives. They raise compelling concerns about the influence of disability prejudice on medical care, how quality of life is assessed, and the problem in resisting “help” dying when help living is hard to get. Advocates for PAS argue that laws contain sufficient safeguards and that disability concerns should not limit what options are available to those who do want to end their lives.139 Yet, as disability advocates point out, legalization of assisted suicide creates a system where “some people who say they want to die will receive suicide intervention, and others will receive suicide assistance.”140 A powerful cartoon by Amy Hasbrouck, Director of Toujours Vivant/Not Dead Yet Canada, illustrates this: it features a wheelchair user between two doors, one requiring stairs to enter and labeled “Suicide Prevention Program” and one at the top of a ramp, labeled “Assisted Suicide.”141 A doctor’s perceptions of quality of life, suffering, and likely prognosis can funnel patients to one door or the other, without necessarily engaging conscious bias. The use of euthanasia under the Groningen Protocol and several cases where parents and doctors opted to starve infants with disabilities, including non-life-threatening conditions, underline the very real danger these attitudes pose to the life and well-being of persons with disabilities.142 There is reason to believe that medical providers and patients with disabilities perceive problems related to care differently. People with disabilities tend to rate their quality of life much higher than their healthcare providers do, and similar to how people without disabilities assess their own quality of life.143 In one survey, medical providers tended to identify barriers to care for people with disabilities in terms of finances, booking and attending appointments, and difficulty explaining to and understanding staff.144 On the other hand, patients with disabilities in focus groups identified other concerns: “lack of 136 Pellegrino, supra note 84, at 45. 137 Coleman, Not Dead Yet, in THE CASE AGAINST ASSISTED SUICIDE 213 (Kathleen Foley & Herbert Hendin, eds., 2002). 138 See Who We Are, NOT DEAD YET, http://notdeadyet.org/about (last visited Nov. 18, 2018). 139 Coleman, supra note 137, at 222; Alicia Ouellette, Barriers to Physician Aid in Dying for People with Disabilities, 6 LAWS no. 23, at 3 (2017) (articles are individually paginated in this journal). 140 Coleman, supra note 137, at 221. 141 TOUJOURS VIVANT/NOT DEAD YET CANADA, https://tvndy.ca/en/ (last visited Nov. 18, 2018). (Scroll down on main page to view cartoon.) 142 See Verhagen & Sauer, supra note 50, at 959; GORSUCH, supra note 8, at 191-94. 143 Nancy Sharby et al., Decreasing Health Disparities for People with Disabilities through Improved Communication Strategies and Awareness, 12 INT’L J. ENVTL. RES. & PUB. HEALTH 3301, 3313 (2015). 144 Id. at 3310-11. World Youth Alliance | 20 [might have been] somewhat coercive," but felt Kate had the ability to make her own decision. A hospital administrator then saw Kate and decided that she was competent and was making the decision on her own. Kate received the lethal drugs, which were put under Erika's care. As time passed, Erika and her husband sent Kate to a nursing home for a week. When Erika visited, Kate always asked “when she would be going home.” On the day she returned from the nursing home, she told Erika and her husband that “she had considered going permanently into a nursing home but had decided to use the pills instead and asked for their help.”161 Within a short time, Kate took the pills and died. Several cases suggest that family expectations can exert pressure, not only on the patients, but also on physicians to assist in suicide even where it may not be warranted. Helen was a patient who performed aerobic exercises up until two weeks before she contacted the physician to request PAS.162 She told the physician she could not do them anymore, and she was also unable to continue to garden, which had been one of her favorite activities. Apart from that she was not bedridden, was not in great pain, and was still able to look after her own house. Helen's own physician had refused to assist in her suicide, and a second physician refused too on the grounds that Helen was depressed. Helen's husband then called the advocacy group Compassion in Dying and was referred to a physician who would assist her. The third doctor finally approved the request. He later regretted his decision and the fact that he didn't personally discuss the case with her regular physician and had only cursory contact with Helen. He also explained the reasons behind his decisions: “The thought of Helen dying so soon was almost too much to bear.... On the other hand, I found even worse the thought of disappointing this family. If I backed out, they'd feel about me the way they had about their previous doctor, that I had strung them along, and in a way, insulted them."163 Some studies have shown that in the Netherlands “families request euthanasia more often than patients themselves” and “the family, the doctors, and the nurses often pressured the patient to request euthanasia.”164 “The relatives’ inability to cope” was also cited by physicians as a major reason (32% of cases) for terminating life without patients consent.165 In 2001, Dutch doctor Wilfrid van Oijen ended the life of an 84-year-old woman at her daughters’ request, and not her own.166 The woman had heart problems and was increasingly bedridden, but was not in pain and had even said that she did not want to die, but could not care for herself. She expressed the desire to be with her daughters who cared for her at home, but the care became burdensome to the daughters, so van Oijen gave her medication to hasten the process of dying.167 The legalization of PAS can also foster economic coercion, both due to financial burdens on families and in savings to society as a whole. Recently, a study was published in Canada which tried to argue that legalizing “medical assistance in dying could reduce annual health care spending across Canada by between $34.7 million and $138.8 million.”168 Legalizing euthanasia sends a message that some groups are a burden for a 161 Id. at 1625. 162 Id. at 1616. 163 Peter Reagan, Helen, 353 LANCET 1265, 1266 (1999), quoted in Hendin & Foley, Oregon, supra note 158, at 1619. 164 Cohen-Almagor, supra note 90, at 249. 165 GORSUCH, supra note 8, at 110. 166 Herbert Hendin, The Dutch Experience, supra note 100, at 115. 167 Id. 168 Aaron J. Trachtenberg & Braden Manns, Cost analysis of medical assistance in dying in Canada, 189 CAN. MED. ASS’N J. E101, E101 (2017). Legalizing euthanasia sends a message that some groups are a burden for a society and that society would be better off without them. World Youth Alliance | 21 society and that society would be better off without them. This inevitably leads to a utilitarian view of human persons, which allows the “sacrifice” of certain groups for the benefit of other groups who aren’t too costly to care for. As the New York State Task Force on Life and the Law, established in the early 1990s to consider the possibility of legalizing PAS, observed: “Limits on hospital reimbursement based on length of stay and diagnostic group, falling hospital revenues, and the social need to allocate health dollars may all influence physicians' decisions at the bedside... Under any new system of health care delivery, as at present, it will be far less costly to give a lethal injection than to care for a patient throughout the dying process.”169 In 2008, Randy Stroup was diagnosed with prostaste cancer and he turned to the Oregon state-run health plan for coverage of his chemotherapy treatments. 170 Since chemotherapy is expensive, Stroup received a letter that stated his request was denied, but the State would pay for physician-assisted suicide.171 Stroup had such a low chance of recovery that the state of Oregon decided he was no longer worth treating.172 In another case in Oregon, a dying patient was euthanized to free a hospital bed.173 As euthanasia advocate Derek Humphry predicted, “one must look at the realities of the increasing cost of health care in an aging society, because in the final analysis, economics, not the quest for broadened individual liberties or increased autonomy, will drive assisted suicide to the plateau of acceptable practice.”174 This is not a fringe position; in fact, a number of officials around the world have endorsed it more or less openly. A former governor of Colorado has openly and repeatedly defended the view that the elderly have a duty to die to make room (and save resources for) the young.175 In 2014 a Lithuanian Health Minister suggested euthanasia could be a solution for poor people,176 and a Japanese finance minister said that the elderly should be allowed to “hurry up and die” to relieve pressure on the state to pay for their medical care.177 Baroness Warnock, a leading ethicist in the U.K., similarly suggested that dementia sufferers may have a “duty to die.”178 It shouldn’t surprise us then, as one poll in Ohio found that “those most likely to oppose the practice [of PAS] were black, people 65 and older, and those with low levels of income and education.”179 It is for this reason that numerous bodies have rejected the legalization of assisted suicide. The British House of Lord concluded in 2001 that a prohibition against the practice was justified precisely because of the possibility that “vulnerable people—the elderly, lonely, 169 NEW YORK STATE TASK FORCE ON LIFE AND THE LAW, WHEN DEATH IS SOUGHT: ASSISTED SUICIDE AND EUTHANASIA IN THE MEDICAL CONTEXT 123 (1994) [hereinafter NYS TASK FORCE ON LIFE AND THE LAW], available at https://www.health.ny.gov/regulations/task_force/reports_publications/when_death_is_sought. 170 Zachary D. Smoll, Physician-Assisted Suicide Tells People Like Me That Our Lives Are No Longer Worth Living, THE PUB. DISCOURSE (May 8, 2017), available at http://www.thepublicdiscourse.com/2017/05/19163/. 171 Id. 172 Id. 173 R.J.D. George, et al., Legalised euthanasia will violate the rights of vulnerable patients, 331 BRIT. MED. J. 684, 685 (2005). 174 DEREK HUMPHRY & MARY CLEMENT, FREEDOM TO DIE: PEOPLE, POLITICS, AND THE RIGHT-TO-DIE MOVEMENT 313 (1998). 175 GORSUCH, supra note 8, at 131. 176 Euthanasia could be option for poor, says Lithuanian health minister, BIOEDGE (Jul 26, 2014), available at https://www.bioedge.org/bioethics/euthanasia_could_be_option_for_poor_says_lithuanian_health_minister/110 71. 177 Let elderly people 'hurry up and die', says Japanese minister, GUARDIAN (Jan 22, 2013), available at https://www.theguardian.com/world/2013/jan/22/elderly-hurry-up-die-japanese. 178 Baroness Warnock: Dementia sufferers may have a 'duty to die', TELEGRAPH (Sept 18, 2008), available at https://www.telegraph.co.uk/news/uknews/2983652/Baroness-Warnock-Dementia-sufferers-may-have-a-duty- to-die.html. 179 GORSUCH, supra note 8, at 126. World Youth Alliance | 22 sick or distressed—would feel pressure, real or imagined, to request early death . . . [and] the message which society sends to vulnerable and disadvantaged people should not, however obliquely, encourage them to seek death, but should assure them of our care and support in life.” 180 The New York State Task Force similarly explained in 1992 that they had “unanimously concluded that legalizing assisted suicide and euthanasia… will pose the greatest risks to those who are poor, elderly, members of a minority group, or without access to good medical care.”181 Similarly, an Australian euthanasia bill from 1996 was repealed by the Commonwealth Parliament in 1997, with the consideration that it “had an unacceptable impact on the attitudes of the Aboriginal community towards health services,”182 and that “evidence was received that hospitals had become feared as places in which Aborigines could be killed without their consent.”183 The poor, elderly, sick, members of minority groups, and people with disabilities already face barriers to healthcare without further undermining their trust that medical providers will provide the same quality of care to them as to everyone else. C. Assisted suicide changes the role of the doctor Legalizing euthanasia and assisted suicide creates a new set of problems for the medical profession, by distorting the doctor-patient relationship and undermining the integrity of medicine. Medicine always operated under the ethical framework expressed in the Hippocratic Oath. In its original form, the Hippocratic Oath stated: “I will give no deadly medicine to any one if asked, nor suggest any such counsel.”184 Today’s version of the oath, called the Declaration of Geneva, also says: “I will maintain the utmost respect for human life… I will not use my medical knowledge to violate human rights and civil liberties, even under threat.”185 Medicine has always operated under the basic principles that life should be preserved and that promoting and restoring health is a natural goal of medicine.186 Whenever possible, the disease should be cured and pain relieved: “Healing is thus the central core of medicine: to heal, to make whole, is the doctor’s primary business.”187 Any society that legalizes euthanasia or assisted suicide undermines these basic principles and necessarily endangers the integrity of the medical profession. As the American Geriatric Society states, Legalization of physician-assisted suicide would create a moral dilemma for geriatricians. Most elderly persons experience serious and progressive illness for extended periods before death and need significant social, financial and medical supports. These resources too often are not available, are of inadequate quality, are not covered by insurance, and are not provided by public entitlement programs. By collaborating in causing early deaths, when continuing to live has been made so difficult, geriatricians would become complicit in a 180 Regina v. Director of Public Prosecutors & Sec’y of State for the Home Dept., [2001] 1 A.C. 800 (H.L.) § 29 (U.K.), quoted in GORSUCH, supra note 8, at 46. 181 NYS TASK FORCE ON LIFE AND THE LAW, supra note 169, at 120. 182 David W. Kissane, Deadly Days in Darwin, in THE CASE AGAINST ASSISTED SUICIDE 206 (Kathleen Foley & Herbert Hendin, eds., 2002). 183 Id. at 205. 184 Hippocratic Oath, ENCYCLOPAEDIA BRITANNICA, available at https://www.britannica.com/topic/Hippocratic-oath. 185 World Medical Association Declaration of Geneva, adopted Sept. 1948, available at https://www.wma.net/policies-post/wma-declaration-of-geneva/. 186 Leon R. Kass, Neither for Love nor Money: Why Doctors Must Not Kill, 95 PUB. INT. 25, 29 (1989). 187 Id. at 39. World Youth Alliance | 25 To offer technical guidance on specific treatments is beyond the scope of this paper, particularly as medicine continues to advance. Different interventions may be considered more or less invasive based on the advancement of medical technology, the nature and progression of the condition, how the intervention works, and other factors. 199 This approach recognizes life as a basic good, while also understanding that other considerations should be taken into account.200 Life need not be prolonged under all circumstances or for as long as possible, but it should not be intentionally ended.201 This is particularly important where the patient cannot make her own decisions, and in the care and options presented to members of other vulnerable groups. Care grounded in the dignity of the person requires a commitment to meet the physical, psychosocial, and palliative needs of all terminally ill patients. A. The physician-patient relationship and goals for end-of-life care Unlike previous eras which lacked the ability to treat illnesses ranging from infection to cancer, most people today will live longer than those a century before. Healthcare providers can solve many problems, but not the last one: while death may be delayed, it cannot be avoided forever. Each patient will have to decide what matters to him or her about his or her own death, whether to prolong life, or accept its progression. Yet the patient is in a vulnerable position due to illness, factors associated with old age, and potentially, disability. Ensuring that patients receive care in line with their goals requires a doctor-patient relationship of trust and good communication. Patients who know they are terminally ill are more likely to discuss end-of-life care with doctors than those who do not know that their condition is terminal.202 Terminal patients are also more likely to direct their care towards symptom management than prolongation of life.203 A patient’s desires can shift due to changes in their healthcare, and non-medical factors, such as relative youth or having young children, can also affect how a patient wants to direct his or her care.204 Evidence suggests that patients who discuss their wishes with their doctors are more likely to receive care in line with what they want.205 There is also reason to believe that many patients who receive life-extending care prefer symptom-directed care.206 One study found that patients tended to choose default 199 For example, seriously ill people may wish to avoid or prolong use of a ventilator based on their perceptions of their likelihood of recovery, Kwon Ivo et al., A survey of the perspectives of patients who are seriously ill regarding end-of-life decisions in some medical institutions of Korea, China, and Japan, 38 J. Med. Ethics 310, 312 (2012), indicating that some see it as an intensive, extraordinary means of life support, where in fact increasing numbers of people with chronic respiratory failure use respirators at home, Sarah Masefield et al., Attitudes and preferences of home mechanical ventilation users from four European countries: an ERS/ELF survey, 3 EUR. RESPIRATORY J. OPEN ACCESS No. 2 at 2 (2017). 200 GORSUCH, supra note 8, at 157-58. 201 See generally GORSUCH, supra note 8, 157-180 (Chapter 9). 202 Jennifer W. Mack et al., End-of-Life Discussions, Goal Attainment, and Distress at the End of Life: Predictors and Outcomes of Receipt of Care Consistent with Preferences, 28 J. CLINICAL ONCOLOGY 1203, 1205 (2010). 203 Id. at 1205, 1208. 204 Id. at 1207, 1203. 205 Id. at 1205. 206 Id. at 1208. Care grounded in the dignity of the person requires a commitment to meet the physical, psychosocial, and palliative needs of all terminally ill patients. World Youth Alliance | 26 options when presented with different versions of advance directives,207 highlighting the risk of inadvertent influence. That same study notes that a common end-of-life care questionnaire in the U.S. has life-extending options as a default,208 potentially influencing patient decisions towards unwanted medical interventions. Communication should be ongoing and personal to avoid losing sight of patients’ wishes. Yet goals of care discussions may not happen when patients do not understand that their health is declining, or because both sides find such conversations difficult,209 or expect each other to bring up various elements, such as pain, depression, or other symptoms.210 A survey of American hematologic oncologists found that many believed the timing of their end-of-life care conversations with patients was often “too late,” and the discussions themselves were held at less than ideal times.211 Some interventions and innovations to promote goals of care conversations have been tested with promising results.212 Holding these conversations early can increase quality of life, including through referrals to other services, such as palliative care for those whose conditions often cause great suffering. 213 Palliative care can be started early, even concurrently with life-prolonging treatments, to ensure quality of life.214 Doctors who elicit patients’ goals may be surprised to learn that what matters to them is not necessarily directly related to death at all. American doctor Mitch Kaminski recalled his surprise when a patient’s goal was simply to walk without falling, and to stay at home rather than receive inpatient care.215 By taking the time to find out what the patient wanted, he was able improve his patient’s quality of life in a meaningful way. This care made such an impression on the family that the man’s widow, herself approaching the end of life, later sought Kaminski out for her own care.216 In both cases, a proper understanding of patient autonomy led to patient-centered care that led to better quality of life and a better experience of dying for the patient and his family. It is worth noting that some patients may express a desire for hastened death. Within jurisdictions that allow PAS and/or euthanasia, that desire may be taken as normal. However, there are varying reasons why someone might want to hasten their death. These have been categorized as reflecting an exit plan (and therefore control over one’s fate), an expression of despair (a state of psychosocial distress), or letting go (not so much a desire to hasten one’s death as an acceptance of approaching death).217 207 Scott D. Halpern et al., Default Options In Advance Directives Influence How Patients Set Goals for End-Of- Life Care, 32 HEALTH AFFAIRS 408, 412-13 (2013). 208 Id. at 408. 209 Ardith Z. Doorenbos et al., An Intervention to Enhance Goals-of-Care Communication Between Heart Failure Patients and Heart Failure Providers, 52 J. PAIN & SYMPTOM MGMT. 353, 354 (2016); Foley, Compassionate Care, supra note 106, at 300. 210 Kurt Kroenke et al., The Association of Depression and Pain with Health-Related Quality of Life, Disability, and Health Care Use in Cancer Patients, 40 J. PAIN & SYMPTOM MGMT. 327, 335 (2010). 211 Oreofe O. Odejide et al., Timeliness of End-of-Life Discussions for Blood Cancers: A National Survey of Hematologic Oncologists, 176 JAMA 263, 263 (2016). 212 See, e.g., Doorenbos, supra note 209, at 357. 213 Id. at 358. The study also notes that “[m]any patients for whom palliative care could significantly improve quality of life do not have access to such care services. Instead of palliative care, patients at end-of-life often receive intensive and costly care even when it may not contribute significantly to prolonging life.” Id. at 354 (citations omitted). 214 See, e.g., Thomas W. LeBlanc, Addressing End-of-Life Quality Gaps in Hematologic Cancers: The Importance of Early Concurrent Palliative Care, 176 JAMA INTERNAL MED. 265, 265-66 (2016). 215 Mitch Kaminski, What one patient taught a physician, WASH. POST, Mar. 10, 2015, at E1. 216 Id. 217 Rinat Nissim et al., The desire for hastened death in individuals with advanced cancer: A longitudinal qualitative study, 69 SOC. SCIENCE & MED. 165, 168-69 (2009). World Youth Alliance | 27 For patients whose desire to hasten their death reflects despair, this despair may not be a constant state, but may vary related to pain and adaptation to the circumstances of illness.218 Those wanting to exercise control over their death may do so out of a desire to avoid experiences they expect will be painful and undignified,219 potentially reflecting and reinforcing stigma about disability. This underlines the need for society to promote an understanding of dignity as distinct from a feeling of being dignified, as discussed above. More practically, however, in addition to discussions about care, there are options available which can help address these concerns, and what is driving them, without the irrevocable step of ending the patient’s life. B. Palliative care Palliative care seeks to alleviate pain and suffering in a way that is respectful of human dignity. Dame Cicely Saunders created the palliative care approach in 1967 in the United Kingdom.220 She argued for the approach of “total care“ which aims to address all aspects of the pain a patient is experiencing. The term palliative care refers to the “medical skill of an optimized expert use of drugs intended to remove or diminish pain, or to put it simple [sic] to improve the life quality. The combination of medical palliative care and human hospice care produces a complete human care and love for the sick and the dying.”221 It is generally understood that while curative medicine seeks to cure disease, palliative medicine seeks to alleviate pain and suffering.222 Palliative care has an essential role to play in end-of-life care; cancer, a leading cause of death worldwide,223 often causes pain for patients, but that pain is largely treatable.224 The World Health Organization defines palliative care as an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. Palliative care: • provides relief from pain and other distressing symptoms; • affirms life and regards dying as a normal process; • intends neither to hasten or postpone death; • integrates the psychological and spiritual aspects of patient care; • offers a support system to help patients live as actively as possible until death; • offers a support system to help the family cope during the patient’s illness and in their own bereavement; • uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated; 218 Id. 219 Id. at 168. 220 Anica Jušić, Eutanazija, 9 REV. SOC. POLIT. 301, 307 (2002). 221 Pozaić, supra note 70, at 153. 222 See generally Morana Brkljačić, Bioetika i bioetički aspekti palijativne medicine, 44 MEDICINA 149 (2008). 223 Cancer, WORLD HEATH ORGANIZATION, https://www.who.int/news-room/fact-sheets/detail/cancer (Sept. 12, 2018). 224 Kroenke et al., supra note 210, at 328. World Youth Alliance | 30 rates of demoralization ranging from 13-33% of patients experiencing cancer or another progressive illness.245 As with depression, demoralization is linked with physical symptoms and quality of life concerns.246 Meaning and purpose are key factors in seriously ill patients’ ability to cope with their illness and approaching death. “[H]opelessness, worthlessness, meaninglessness, and shame are the potential mediators of suicidal thinking.”247 Conversely, a sense of meaning and purpose helps patients to deal with their illness.248 One study observed that a lack of meaning and purpose was more strongly correlated with a desire for hastened death than physical symptoms, loss of function, or even other psychological factors.249 Therefore, interventions designed to foster a sense of meaning and purpose can lead to reducing patients’ desire for hastened death.250 One such intervention which has been being developed is meaning-centered psychotherapy based on the work of psychiatrist (and Holocaust survivor) Viktor Frankl, who wrote Man’s Search for Meaning.251 Studies have targeted spiritual wellbeing252 through both group and individual therapy.253 Although these interventions are still in development, they have shown promise as a treatment avenue. A pilot study comparing meaning-centered group psychotherapy (MCGP) with supportive group psychotherapy found higher rates of attendance and a greater impact on spiritual wellbeing among those undergoing MGCP than those receiving supportive group therapy.254 A more recent study focused on individuals divided into groups receiving enhanced usual care (EUC), supportive psychotherapy (SP), and individual meaning-centered psychotherapy (IMCP).255 Although overall ICMP’s efficacy compared to SP was not significantly greater, the impact was higher when comparing those who had attended more sessions, suggesting overall that ICMP is an effective invention. 256 These and other interventions testify to the treatability of despair and hopelessness which many experience at the end of life. 245 Id. at 606. Studies focused on measuring dimensions of “clinically significant” demoralization found smaller proportions, in the range of 13-18% of patients. Id. 246 Id. 247 Id. 248 Mariona Guerrero-Torrelles et al., Meaning in Life as a Mediator Between Physical Impairment and the Wish to Hasten Death in Patients With Advanced Cancer, 56 J. PAIN & SYMPTOM MGMT. 826, 827 (2017). 249 Id. at 830. 250 Id. at 830-31. 251 William Breitbart et al., Individual Meaning-Centered Psychotherapy for the Treatment of Psychological and Existential Distress: A Randomized Controlled Trial in Patients with Advanced Cancer, 124 CANCER 3231, 3232 (2018) [hereinafter Breitbart et al., IMCP]. 252 “Spiritual wellbeing” in this context reflects existential elements of wellbeing, such as meaning and purpose. William Breitbart, et al., Meaning-centered group psychotherapy for patients with advanced cancer: a pilot randomized controlled trial, 19 PSYCHO-ONCOLOGY 21, 21-22 (2010) [hereinafter Breitbart et al., Meaning- centered group psychotherapy]. 253 See generally Breitbart et al., IMCP, supra note 251; Breitbart et al., Meaning-centered group psychotherapy, supra note 252. 254 Breitbart et al., Meaning-centered group psychotherapy, supra note 252, at 24-25. 255 See generally Breitbart et al., IMCP, supra note 251. 256 Id. at 3236-37. Therefore, interventions designed to foster a sense of meaning and purpose can lead to reducing patients’ desire for hastened death. World Youth Alliance | 31 VI. Conclusion Physician-assisted suicide and euthanasia may seem like an answer to the possibility of a painful or difficult death, loss of function, or poor quality of life. There is no right under international law to assistance in ending one’s life, and most countries and jurisdictions ban the practice. Such bans have been upheld in most national and international courts. Places which allow the practices have adopted expansive interpretations of rules that go far beyond the common refrain that assistance in ending their lives should be allowed for terminally ill, mentally competent adults. Permitting these practices also corrupts the practice of medicine, fundamentally changing the doctor-patient relationship. They offer less social and legal protection to those with disabilities or experiencing serious illness, which is particularly troubling in light of patient vulnerability and the risk of coercion. Society must resist these practices, which may well exacerbate existing gaps in care and place the already vulnerable at greater risk. The ultimate answer to pain, suffering, and dependency at the end of life is to accompany the dying person. This requires adequate treatments, such as those discussed above, to be available to all, but it also requires that caregivers, healthcare providers, and society as a whole affirm the value of every person. No one goes through life entirely autonomous or without difficulties. A culture that cherishes human dignity eases that suffering through affirming that we care about people for who they are, not for what they can or cannot do. That care and concern must then direct our efforts towards ensuring medical and psychosocial care that upholds the fundamental dignity of each person at the end of life without exception.