Hostname: page-component-76fb5796d-zzh7m Total loading time: 0 Render date: 2024-04-26T07:32:08.879Z Has data issue: false hasContentIssue false

Voluntarily Stopping Eating and Drinking: A Normative Comparison with Refusing Lifesaving Treatment and Advance Directives

Published online by Cambridge University Press:  01 January 2021

Abstract

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.

Type
Independent Articles
Copyright
Copyright © American Society of Law, Medicine and Ethics 2017

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

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 Bolt, E. E., Hagens, M. H., Willems, D., and Onwuteaka-Philipsen, B. D., “Primary Care Patients Hastening Death by Voluntarily Stopping Eating and Drinking,” Annals of Family Medicine 13, no. 5 (2015): 421-428, at 427.CrossRefGoogle Scholar
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.Google Scholar
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.Google Scholar
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 Lewis, P., “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).+(last+visited+November+17,+2017).>Google Scholar
VSED has sometimes gone by other labels, including “voluntary palliated starvation,” “terminal dehydration,” and “self-induced dehydration.” See White, B., Willmott, L., and Savulescu, J., “Voluntary Palliated Starvation: A Lawful and Ethical Way to Die?” Journal of Law & Medicine 22 (2014): 375-386; Miller, F. G. and Meier, D. E., “Voluntary Death: A Comparison of Terminal Dehydration and Physician-assisted Suicide,” Annals of Internal Medicine 128 (1998): 559-562.Google Scholar
Byock, I., “Patient Refusal of Nutrition and Hydration: Walking the Ever-Finer Line,” American Journal of Hospice and Palliative Care 8 (1995): 8-13; Ganzini, L., et al., “Nurses’ Experience with Hospice Patients Who Refuse Food and Fluids to Hasten Death,” New England Journal of Medicine 349, no. 4 (2003): 359–365; Jacobs, S., “Death by Voluntary Dehydration — What the Caregivers Say,” New England Journal of Medicine 349, no. 4 (2003): 325–326; Span, P., “To Hasten Death, Some Patients Don’t Eat or Drink,” New York Times, October 25, 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.Google Scholar
The framework articulated in this sub-section is developed in greater detail in Menzel, P., “Respect for Personal Autonomy in the Justification of Death Hastening Choices,” in Cholbi, M. (ed), Euthanasia and Assisted Suicide: Global Views on Choosing to End Life (Santa Barbara, CA: Praeger, 2017): 231-254.Google Scholar
O’Neill, O., Autonomy and Trust in Bioethics (Cambridge, England: Cambridge University Press, 2002): at 21-23.CrossRefGoogle Scholar
Steinbock, B., London, A. J., and Arras, J. D., eds., Ethical Issues in Modern Medicine, 8th ed. (New York: McGraw Hill, 2013): at 36 and 45.Google Scholar
O’Neill, supra note 8, at 47-48.Google Scholar
Whose Life Is It Anyway? (motion picture), Badham, J., director (Beverly Hills, CA: Metro-Goldwyn-Mayer, 1981).Google Scholar
Cantor, N. L., “On Hastening Death Without Violating Legal and Moral Prohibitions,” Loyola University Chicago Law Journal 37 (2006): 101-125, at 106.Google Scholar
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.”Google Scholar
Pope, T. M., “Clinicians May Not Administer Life-Sustaining Treatment Without Consent: Civil, Criminal, and Disciplinary Sanctions,” Journal of Health and Biomedical Law 9 (2013): 213-196; Meisel, A., Cerminara, K., and Pope, T. M., 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.Google Scholar
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.”Google Scholar
This was the contention of several physicians who cared for Dax Cowart, a well-known burn victim patient: Burton, K., “A Chronicle: Dax’s Case as It Happened,” in Kliever, L., 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; Cowart, D. and Burt, R., “Confronting Death: Who Chooses, Who Controls?” Hastings Center Report 28, no. 1(1998): 14-24, reprinted in Steinbock, London, and Arras, supra note 9, at 348-353.Google Scholar
Pope, T. M. and Anderson, L. E., “Voluntarily Stopping Eating and Drinking: A Legal Treatment Option at the End of Life,” Widener Law Review 17, no. 2 (2011): 363-427; Cantor (2006), supra note 12, at 109-112; and Cantor, N. C., “Honing the Emerging Right to Stop Eating and Drinking,” posted November 18, 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).Google Scholar
Cantor (2006), supra note 12, at 112.Google Scholar
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.Google Scholar
Boyle, J., “Intention, Permissibility, and the Consistency of Traditional End-of-Life Care,” in Cholbi, M. J., 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.Google Scholar
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.Google Scholar
Id., at 393 (emphasis added).Google Scholar
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 O’Rourke, K. D., “The Catholic Tradition on For-going Life Support,” The National Catholic Bioethics Quarterly 5, 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.CrossRefGoogle Scholar
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 Jansen, L. A. and Sulmasy, D. P., “Sedation, Alimentation, Hydration, and Equivocation: Careful Conversation about Care at the End of Life,” Annals of Internal Medicine 136, no. 11 (June 2002): 845-849, at 846 and 848.CrossRefGoogle Scholar
These are phrases used by Birnbacher, D., “Ist Sterbefasten eine Form von Suizid?” Ethik in der Medizin 27, no. 4 (2015), DOI 10.1007/s00481-015-0337-9 (unpublished English version, “Is Voluntarily Stopping Eating and Drinking a Form of Suicide?”), and Jox, R. J., Thurn, T., Black, I., Anneser, J., and Bordasio, G. D., “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.CrossRefGoogle Scholar
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.Google Scholar
See supra note 4.Google Scholar
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.Google Scholar
Cantor (2006), supra note 12, at 112.CrossRefGoogle Scholar
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.Google Scholar
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, October 14-15, 2016.Google Scholar
Shacter, P. R., “Not Here by Choice: My Husband’s Choice About How and When to Die,” Narrative Inquiry in Bioethics 6, no. 2 (2016): 94-96, at 95. For a fuller account of Shacter’s husband’s death by VSED, see Shacter, P. R., Choosing to Die, A Personal Story: Elective Death by VSED in the Face of Degenerative Disease (self-published, 2017, information at info@PhyllisShacter.com).CrossRefGoogle Scholar
Kohlhase, W., “Voluntary Stopping of Eating and Drinking: A Patient’s Right to Choose or an Act of Suicide?” Narrative Inquiry in Bioethics 6, no. 2 (2016): 88-90, at 89 (emphasis added).Google Scholar
Menzel, P. T., “Advance Directives, Dementia, and Eligibility for Physician-Assisted Death,” New York Law School Law Review 58, no. 2 (2013): 321-345, at 342-343.Google Scholar
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 Schwarz, J., “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 Medicine 10, no. 6 (2007): 1288-1297; Schwarz, J. K., “Death by Voluntary Dehydration: Suicide or the Right to Refuse a Life-Prolonging Measure?” Widener Law Review 17, no. 2 (2011): 351-361.Google Scholar
Cantor, N. L., “Changing the Paradigm of Advance Directives to Avoid Prolonged Dementia,” posted April 20, 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.+(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.>Google Scholar
Articulated in many cases, including Brophy v. N. Eng. Sinai Hospital, 497 N.E.2d 626 (Mass. 1986), at 634.Google Scholar
Dresser, R. and Robertson, J. S., “Quality of Life and Non-Treatment Decisions for Incompetent Patients,” Law, Medicine and Health Care 17, no. 3 (1989): 234244.CrossRefGoogle Scholar
Rhoden, N., “The Limits of Legal Objectivity,” North Carolina Law Review 68 (1990): 845-865, at 860.Google Scholar
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.Google Scholar
Cantor, N. L., “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 DeGrazia, D., Human Identity and Bioethics (New York: Cambridge University Press, 2005): chapter 3, 77-114; and Schechtman, M., The Constitution of Selves (Ithaca: Cornell University Press, 1996): chapters 5-6, 93-162.Google Scholar
Dworkin, R., Life’s Dominion: An Argument about Abortion, Euthanasia and Individual Freedom (New York: Alfred A. Knopf, 1993): at 201.Google Scholar
Menzel, P. T. and Steinbock, B., “Advance Directives, Dementia, and Physician-Assisted Death,” Journal of Law, Medicine & Ethics 41, no. 2 (2013): 484-500, at 495.CrossRefGoogle Scholar
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 Menzel, P., “Change of Mind: An Issue for Advance Directives,” in Davis, J. K. (ed.), Ethics at the End of Life: New Issues and Arguments (New York: Routledge, 2017), 126-137.Google Scholar
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.Google Scholar
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 Pope, T. M., “Legal Briefing: New Penalties for Disregarding Advance Directives and Do-Not-Resuscitate Orders,” Journal of Clinical Ethics 28, no. 1 (2017): 74-78.Google Scholar