Refusal of lifesaving treatment, and such refusal by advance directive, are widely recognized as ethically and legally permissible. Voluntarily stopping eating and drinking (VSED) is not. Ethically and legally, how does VSED compare with these two more established ways for patients to control the end of life? Is it more questionable because with VSED the patient intends to cause her death, or because those who assist it with palliative care could be assisting a suicide?
In fact the ethical and legal basis for VSED is virtually as strong as for refusing lifesaving treatment and less problematic than the basis for refusing treatment by advance directive. VSED should take its proper place among the accepted, permissible ways by which people can control the time and manner of death.
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References
1.
Not that it is entirely unrecognized or not accepted. The American Nurses Association, for example, includes both VSED and comfort feeding only as appropriate means by which dying may be hastened in situations of terminal illness, pursuant to proper patient and proxy consent. “Nutrition and Hydration at the End of Life,” revised position statement of the ANA (Silver Spring, MD: 2017), available at <http://www.nursingworld.org/MainMenuCategories/EthicsStandards/Resources/Ethics-Position-Statements/Nutrition-and-Hydration-at-End-of-Life.pdf> (last visited November 17, 2017). In The Netherlands, an initial study of primary care providers concludes that “VSED is not uncommon in Dutch primary care.” See E.E.Bolt, M.H.Hagens, D.Willems, and B.D.Onwuteaka-Philipsen, “Primary Care Patients Hastening Death by Voluntarily Stopping Eating and Drinking,”Annals of Family Medicine13, no. 5 (2015): 421-428, at 427.
2.
Alternately known as physician-assisted suicide. By either term the act referred to is the same: a physician authorizes a lethal agent that the patient self-administers.
3.
In this paper I do not address another question that will be important to some in considering VSED: withholding food and water by mouth in accordance with a patient’s advance directive to do so. Though legally and ethically problematic, this combination of VSED and advance directive has been explored and cautiously defended by some. For sources and further discussion, see note 49.
4.
Physician assistance in a suicide is legal in Oregon, Washington, Vermont, Montana, California, and Colorado, as well as the District of Columbia. Outside the U.S. it is legal in Switzerland, Belgium, and The Netherlands. In those jurisdictions it is typically allowed only in restricted circumstances such as terminal illness (the U.S. states) or unbearable suffering (Belgium and the Netherlands). The exception is Switzerland, where neither terminal illness nor a minimum level of suffering are required, though the person assisting must be acting unselfishly. See P.Lewis, “Assisted Dying: What Does the Law in Different Countries Say?”BBC World report (2015), available at <http://www.bbc.com/news/world-34445715?SThisFB> (last visited November 17, 2017).
5.
VSED has sometimes gone by other labels, including “voluntary palliated starvation,” “terminal dehydration,” and “self-induced dehydration.” See B.White, L.Willmott, and J.Savulescu, “Voluntary Palliated Starvation: A Lawful and Ethical Way to Die?”Journal of Law & Medicine22 (2014): 375-386; F.G.Miller and D.E.Meier, “Voluntary Death: A Comparison of Terminal Dehydration and Physician-assisted Suicide,”Annals of Internal Medicine128 (1998): 559-562.
6.
I.Byock, “Patient Refusal of Nutrition and Hydration: Walking the Ever-Finer Line,”American Journal of Hospice and Palliative Care8 (1995): 8-13; L.Ganzini, et al., “Nurses’ Experience with Hospice Patients Who Refuse Food and Fluids to Hasten Death,”New England Journal of Medicine349, no. 4 (2003): 359-365; S.Jacobs, “Death by Voluntary Dehydration — What the Caregivers Say,”New England Journal of Medicine349, no. 4 (2003): 325-326; P.Span, “To Hasten Death, Some Patients Don’t Eat or Drink,”New York Times, October25, 2016: D5. As noted in most of these sources, the major challenge to comfort in dying by VSED is not hunger, but thirst. If the person has even small sips of water or ice chips, dying can be prolonged considerably. For oral comfort most caregivers use a very fine mist of water sprayed on lips and mouth.
7.
The framework articulated in this sub-section is developed in greater detail in P.Menzel, “Respect for Personal Autonomy in the Justification of Death Hastening Choices,” in M.Cholbi (ed), Euthanasia and Assisted Suicide: Global Views on Choosing to End Life (Santa Barbara, CA: Praeger, 2017): 231-254.
8.
O.O’Neill, Autonomy and Trust in Bioethics (Cambridge, England: Cambridge University Press, 2002): at 21-23.
9.
B.Steinbock, A.J.London, and J.D.Arras, eds., Ethical Issues in Modern Medicine, 8th ed. (New York: McGraw Hill, 2013): at 36 and 45.
10.
O’Neill, supra note 8, at 47-48.
11.
Whose Life Is It Anyway? (motion picture), J.Badham, director (Beverly Hills, CA: Metro-Goldwyn-Mayer, 1981).
12.
N.L.Cantor, “On Hastening Death Without Violating Legal and Moral Prohibitions,”Loyola University Chicago Law Journal37 (2006): 101-125, at 106.
13.
Expressed by Justice Cardozo in Schloendorff v. New York Hospital 211 NY 125 (1914) at 129: “Every human being of adult years and sound mind has a right to determine what shall be done with his own body.”
14.
T.M.Pope, “Clinicians May Not Administer Life-Sustaining Treatment Without Consent: Civil, Criminal, and Disciplinary Sanctions,”Journal of Health and Biomedical Law9 (2013): 213-196; A.Meisel, K.Cerminara, and T.M.Pope, The Right to Die: The Law of End-of-Life Decisionmaking, 3rd ed. (New York: Wolters Kluwer Law & Business, 2017): loose-leaf publication from 2004, with annual supplements). From Meisel et al., a short historical sketch running up to the inclusion by 1990 of lifesaving treatment in even nonterminal situations can be constructed. Initial steps were to define “life-sustaining treatment” as treatment that “will serve only to prolong the process of dying” (para. 7.06[A-3]) and to dispense with the usefulness of “the purported distinction between ordinary and extraordinary treatments…. Antibiotics [for example] may be forgone on the same basis and pursuant to the same standards of decisionmaking as any other therapy” (para. 6.03[F]). In 1978, Satz v. Permutter 362 So. 2d 160 (Fla. Ct. App. 1978), affirmed 379 So. 2d 359 (Fla. 1980), ruled that an exercise of the right to refuse lifesaving treatment that leads to death is not attempted suicide if the patient’s affliction is not self-induced (para. 12.02[C-4]). Beginning in 1985, “courts in a … growing number of cases have not only recognized, but also have ceased trying to circumvent, the right of competent patients to refuse treatment when refusal would almost certainly result in their deaths but treatment was almost certain to restore their health to the status quo ante” (para. 5.01[A]). By 1990, in In re Browning 568 So. 2d 4.10 (Fla. 1990), the right of a competent patient to refuse treatment had expanded further to be virtually absolute, encompassing the right to refuse “regardless of his or her medical condition” (para. 5.01[A]), including not being limited to terminal illness.
15.
As reflected in one of the most expansive statements of the scope of the right, In re Browning 568 So. 2d 4.10 (Fla. 1990), supra note 14: the patient’s right to refuse treatment holds “regardless of his or her medical condition.”
16.
This was the contention of several physicians who cared for Dax Cowart, a well-known burn victim patient: K.Burton, “A Chronicle: Dax’s Case as It Happened,” in L.Kliever, ed., Dax’s Case: Essays in Medical Ethics and Human Meaning (Dallas: Southern Methodist University Press, 1989), reprinted in Steinbock, London, and Arras, supra note 9, 343-347; D.Cowart and R.Burt, “Confronting Death: Who Chooses, Who Controls?”Hastings Center Report28, no. 1(1998): 14-24, reprinted in Steinbock, London, and Arras, supra note 9, at 348-353.
17.
T.M.Pope and L.E.Anderson, “Voluntarily Stopping Eating and Drinking: A Legal Treatment Option at the End of Life,”Widener Law Review17, no. 2 (2011): 363-427; Cantor (2006), supra note 12, at 109-112; and N.C.Cantor, “Honing the Emerging Right to Stop Eating and Drinking,” posted November18, 2016, at Bill of Health (a blog at the Petrie-Flom Center of Harvard Law School), available at <http://blogs.harvard.edu/billofhealth/2016/11/18/patients-right-to-stop-eating-and-drinking/> (last visited August 17, 2017).
18.
Cantor (2006), supra note 12, at 112.
19.
In oral argument in Vacco v. Quill, 521 U.S. 793 (1997) (No. 95-1858) at 13:39 to 13:46, available at <http://www.oyez.org/cases/1990-1999/1996/1996_95_1858/argument> (last visited November 17, 2017). As oral argument, Rehnquist’s view here is only dictum, not case law precedent. See Pope and Anderson, supra note 17, at 414. According to a ruling of the Supreme Court of South Australia supporting VSED, bodily integrity protects the refusal to eat and drink in the same way it protects the refusal of medical treatment: H Ltd v J (2010) 107 SASR 352, at 64-65. The court wrote that though “there is a difference between food and medicine…, those differences do not…sustain a distinction between suicide and the exercise of a right to self-determination…. Refusal of sustenance and medication is not suicide within the common law meaning of that term.” See White, Willmott, and Savulescu (2014), supra note 5, at 379-380.
20.
This close connection of VSED with the right to refuse life-saving treatment may not similarly obtain between the right to refuse treatment and physician-assisted death (euthanasia and aid-in-dying). If it does not, fewer pressures of consistency push toward legalizing aid-in-dying or euthanasia when the society accepts VSED.
21.
J.Boyle, “Intention, Permissibility, and the Consistency of Traditional End-of-Life Care,” in M.J.Cholbi, ed., Euthanasia and Assisted Suicide: Global Views on Choosing to End Life (Santa Barbara, CA: Praeger/ABC-CLIO, 2017): 255-275, at 256 and 260.
22.
U.S. Bishops’ Pro-Life Committee, “Nutrition and Hydration: Moral and Pastoral Reflections” (Washington, DC: U.S. Catholic Conference, Inc., 1992). Reprinted in Steinbock, London, and Arras, eds., supra note 9: 391-397, at 393.
23.
Id., at 393 (emphasis added).
24.
Some may argue that the doctrinal Roman Catholic position should not reach this conclusion. The elements in Catholic moral theology that may provide grounds for regarding VSED as permissible include a fuller understanding of the “extraordinary” care that may be refused as involving “disproportionate” or “excessive burden,” a strong emphasis on “hope of benefit” and “friendship with God” as the ultimate goods that extended life can often bring but sometimes threatens, and wariness about a too exclusive focus on the slippery notion of intention. On these important nuances in Catholic moral tradition, see K.D.O’Rourke, “The Catholic Tradition on For-going Life Support,”The National Catholic Bioethics Quarterly5, no. 3 (2005): 537-553. I only call attention to these elements; O’Rourke himself does not attempt to draw from them any conclusion about the permissibility of VSED.
25.
Boyle, supra note 21, at 262. Boyle clarifies the relationship further at 272: “…The justification of the prohibition against intentional killing is not achieved by the Rule of Double Effect; that is a distinct and prior matter.” See also the discussion of the role of double effect and suicide in the assessment of VSED in L.A.Jansen and D.P.Sulmasy, “Sedation, Alimentation, Hydration, and Equivocation: Careful Conversation about Care at the End of Life,”Annals of Internal Medicine136, no. 11 (June2002): 845-849, at 846 and 848.
26.
One might try to rescue VSED, using the framework of the Rule of Double Effect, by claiming that stopping eating and drinking does not directly cause death — the dehydration that flows from VSED does, not VSED itself. This reasoning will not work. The Rule of Double Effect does put the focus not on the causation per se but on whether one directly and intentionally causes the death. “Directly,” however, is sufficiently problematic that it likely has little substantive role in the formulation except to accentuate the importance of not intentionally causing death. It cannot mean that there are no intermediate processes between the action and the final result, for that would mean that a fatal stabbing directly caused only the bleeding, and the bleeding, not the stabbing, is what caused death. Since we do not accept that sophistry, we have to allow intermediate elements into a causal chain to death without canceling the initial act’s status as causing death. Some meaning other than “without intermediate effects” will have to be found for what the prohibited “directly causing” means. One plausible candidate is that it calls attention to the certainty with which the causation will proceed. Refusal of lifesaving treatment, for example, could then qualify as an act that did not directly and intentionally cause death, for the person might live nonetheless. Another plausible candidate is that “not directly” just means, or emphasizes, “not intentionally.” Note that under neither interpretation will VSED be excused. In many cases the patient employs VSED precisely with the intention to die, and in all cases in which the patient follows through with it, it is with certainty that ceasing the intake of food and fluids will cause death. VSED does cause dehydration, and dehydration is the immediate cause of death, but VSED, too, still causes death, intentionally and with certainty.
27.
These are phrases used by D.Birnbacher, “Ist Sterbefasten eine Form von Suizid?”Ethik in der Medizin27, no. 4 (2015), DOI 10.1007/s00481-015-0337-9 (unpublished English version, “Is Voluntarily Stopping Eating and Drinking a Form of Suicide?”), and R.J.Jox, T.Thurn, I.Black, J.Anneser, and G.D.Bordasio, “Palliative Care for Patients Dying by Voluntarily Stopping Eating and Drinking: An Ethical Analysis,” poster presentation, World Research Congress, European Association of Palliative Care, Dublin, Ireland, 9-11 June 2016, and publication #01ED1402B, Klinikum Rechts der Isar, Technische Universitat Munchen, Federal Ministry of Education and Research, 2016. In Roman Catholic moral theology, suicide and euthanasia (killing, generally) can be accomplished by omission, not just by commission. See O’Rourke, supra note 24, at 540.
28.
A slightly different analysis of how VSED qualifies as suicide is given by Jox et al., supra note 27. Jox et al. focus on action rather than causation: suicide involves an explicit element of deliberate action, and actions are sometimes performed by omissions.
29.
See supra note 4.
30.
Jox et al., supra note 27, argue that different circumstances should determine whether the palliative care used with the VSED that is suicide constitutes assistance with a suicide or only comfort enhancing care. If patients would choose VSED only when assured that they will receive palliative care as needed throughout the process, or if the patient has already begun VSED but would resume eating and drinking were palliative care not provided, then providing such care is assisting in a suicide. On the other hand, if VSED has been begun and the patient will continue its course even if palliative care is not provided, then providing it is not assisting the suicide. These distinctions may or may not be coherent and relevant. I do not pursue them because in my analysis, the more important question is whether the suicide and suicide assistance that VSED may involve make it wrong. That is not an option for Jox et al., who are concerned with whether palliative care organizations and legal scholars can defend the provision of medical support for VSED when they are already professionally committed to opposing suicide and its assistance.
31.
Cantor (2006), supra note 12, at 112.
32.
The Supreme Court of South Australia in H Ltd v J, supra note 19, made a slightly different move to avoid the conclusion that assisting with VSED is the criminal offence of assisting a suicide. The judge had previously concluded that VSED was not suicide, but stated that even if he was wrong and it was suicide, “merely respecting a competent refusal falls short of the required encouragement to constitute aiding and abetting.” See White, Willmott, and Savulescu, supra note 5, at 382-384. (The quotation is White, Willmott, and Savulescu’s description of the judge’s position, not the judge’s own words.) This point will not hold if providing the palliative care is significantly more by way of assistance than merely respecting the patient’s choice to use VSED.
33.
Span, supra note 6, conveying the remarks of Dr. Timothy Quill and other caregivers at the conference, “Hastening Death by Voluntarily Stopping Eating and Drinking,”Seattle University School of Law, October14-15, 2016.
34.
P.R.Shacter, “Not Here by Choice: My Husband’s Choice About How and When to Die,”Narrative Inquiry in Bioethics6, no. 2 (2016): 94-96, at 95. For a fuller account of Shacter’s husband’s death by VSED, see P.R.Shacter, Choosing to Die, A Personal Story: Elective Death by VSED in the Face of Degenerative Disease (self-published, 2017, information at info@PhyllisShacter.com).
35.
W.Kohlhase, “Voluntary Stopping of Eating and Drinking: A Patient’s Right to Choose or an Act of Suicide?”Narrative Inquiry in Bioethics6, no. 2 (2016): 88-90, at 89 (emphasis added).
36.
P.T.Menzel, “Advance Directives, Dementia, and Eligibility for Physician-Assisted Death,”New York Law School Law Review58, no. 2 (2013): 321-345, at 342-343.
37.
Some authors approach the question of whether VSED is suicide from a somewhat different pragmatic perspective: since VSED and its assistance are legally permissible, they do not warrant the label “suicide,” especially not when they are pursued in the context of suffering at the end of life. Two substantial discussions by Judith Schwarz of the relationship of VSED to suicide might be interpreted to take such an approach. See J.Schwarz, “Exploring the Option of Voluntarily Stopping Eating and Drinking within the Context of a Suffering Patient’s Request for a Hastened Death,”Journal of Palliative Medicine10, no. 6 (2007): 1288-1297; J.K.Schwarz, “Death by Voluntary Dehydration: Suicide or the Right to Refuse a Life-Prolonging Measure?”Widener Law Review17, no. 2 (2011): 351-361.
38.
N.L.Cantor, “Changing the Paradigm of Advance Directives to Avoid Prolonged Dementia,” posted April20, 2017, at Bill of Health (a blog at the Petrie-Flom Center of Harvard Law School), available at <http://blogs.harvard.edu/billofhealth/2017/04/20/changing-the-paradigm-of-advance-directives/> (last visited November 17, 2017). The interior quotation is from Brophy v. N. Eng. Sinai Hospital, 497 N.E.2d 626 (Mass. 1986), at 634.
39.
Articulated in many cases, including Brophy v. N. Eng. Sinai Hospital, 497 N.E.2d 626 (Mass. 1986), at 634.
40.
R.Dresser and J.S.Robertson, “Quality of Life and Non-Treatment Decisions for Incompetent Patients,”Law, Medicine and Health Care17, no. 3 (1989): 234–244.
41.
N.Rhoden, “The Limits of Legal Objectivity,”North Carolina Law Review68 (1990): 845-865, at 860.
42.
In speaking of the “authority” of ADs I do not claim for them anything like final control. The term only means that they have normative force and should be respected as having a substantial role.
43.
N.L.Cantor, “Is It Immoral for Me to Dictate an Accelerated Death for My Future Demented Self?” Bill of Health (blog-site of the Petrie-Flom Center of Harvard Law School): at 5, posted Dec 2, 2015, available at <http://blogs.harvard.edu/billofhealthj/2015/12/02/is-it-immoral-for-me-to-dictate-an-accelerated-death-for-my-future-demented-self/> (last visited November 17, 2016). Among the authors who develop the notion of narrative self as being at the core of individual identity are D.DeGrazia, Human Identity and Bioethics (New York: Cambridge University Press, 2005): chapter 3, 77-114; and M.Schechtman, The Constitution of Selves (Ithaca: Cornell University Press, 1996): chapters 5-6, 93-162.
44.
R.Dworkin, Life’s Dominion: An Argument about Abortion, Euthanasia and Individual Freedom (New York: Alfred A. Knopf, 1993): at 201.
45.
P.T.Menzel and B.Steinbock, “Advance Directives, Dementia, and Physician-Assisted Death,”Journal of Law, Medicine & Ethics41, no. 2 (2013): 484-500, at 495.
46.
Sometimes the new situation that poses the dilemma about whether to follow the previous directive is more accurately described as a “change of mind” situation than a conflict between the patient’s directive and her current best interest. A legitimate change of mind about one’s directive changes the directive itself and may thus remove the conflict. What changes in mental attitude constitute a real change of mind about one’s directive is itself a complex matter. I have attempted to sort out this issue in P.Menzel, “Change of Mind: An Issue for Advance Directives,” in J.K.Davis (ed.), Ethics at the End of Life: New Issues and Arguments (New York: Routledge, 2017), 126-137.
47.
We must be careful here. Admitting into the moral equation James’ experiential interest in surviving does not dictate the conclusion that we should administer the lifesaving treatment. It only means that the AD does not have exclusive authority. Were James to slide further into dementia, for example, to a point where he could not anticipate tomorrow or appreciate having survived from yesterday, for example, a decision to follow his directive could be justified on the basis of what would appear to be a compelling judgment about his current overall best interest. The subjective value to him of survival will have diminished to a point that it can readily be outweighed by his strong critical interest in not being treated. If we did not at some point allow the critical interests conveyed in James’ AD to tip the balance as his experiential interest in survival declines, we would be treating him the same as a never-competent person. That would expose us to Rhoden’s compelling objection that previously competent persons never be treated simply as if they had never been competent. With co-authors I have referred to this way of handling the tension between then-self and now-self — weighing up together a person’s experiential and critical interests — as a “balancing” or “sliding scale” model. See Menzel and Steinbock, supra note 45, at 495-496, and Menzel and Chandler-Cramer, note 49, at 28-29.
48.
Cantor (2017), supra note 38, at the last (unnumbered) page before Cantor presents his own advance directive (emphasis added). One can also observe more generally about ADs that clinicians’ actual incentives to follow them may be weak. Even if ADs are seen by clinical caregivers to have significant ethical and legal authority, their perceptions of legal vulnerability can easily lead them not to follow an AD. They may, not unreasonably, have greater fear of legal vulnerability if they follow a directive and the patient dies than they do if they fail to follow the directive. This situation in the world of practice may be changing, however, as more judicial decisions come forth that hold providers accountable for not following a valid, applicable directive. See T.M.Pope, “Legal Briefing: New Penalties for Disregarding Advance Directives and Do-Not-Resuscitate Orders,”Journal of Clinical Ethics28, no. 1 (2017): 74-78.
49.
The last two issues are at the core of the individual situations and legal cases of Margot Bentley in British Columbia in 2014-2016 and Nora Harris in Medford, Oregon, in 2016-2017. On Bentley, see Bentley v. Maplewood Seniors Care Society, 2014 BCSC 165 (Feb. 3, 2014); Bentley v. Maple-wood Seniors Care Society 2015 BCCA 91 (Mar. 5, 2015); K.Hammond, “Kept Alive — The Enduring Tragedy of Margot Bentley,”Narrative Inquiry in Bioethics6 (2016): 80-82; and P.Fayerman, “Margot Bentley Dies, A Finality that Couldn’t Come Too Soon for Anguished Family,”Vancouver Sun (Nov. 11, 2016), available at <http://vancouversun.com/health/seniors/margot-bentley-dies-a-finality-that-couldnt-come-too-soon-for-anguished-family> (last visited November 17, 2017). On Harris, see J.Aleccia, “Despite Advance Directive, Dementia Patient Denied Her Last Wish, Says Spouse,”Kaiser Health News, August20, 2017, available at <http://khn.org/news/despite-advance-directive-dementia-patient-denied-last-wish-says-spouse/> (last visited November 17, 2017); the court appointed patient representative’s statement to the court on behalf of Harris, available at <https://www.documentcloud.org/documents/3921693-Foster-Statement-Hearing-07162016.html> (last visited November 17, 2017); and the brief court order pursuant to that, available at <https://www.documentcloud.org/documents/3921692-Harris-Order-Denied.html> (last visited November 17, 2017). These same two issues are almost certain to arise in future cases even if the patient’s advance directive is clear about refusing oral feeding, which Bentley’s and Harris’ directives were not.
