Thaddeus Mason Pope, JD, PhD
Terminally ill patients with cancer will sometimes ask their clinicians for help with assisted or hastened death.1 Although palliative care and hospice care can usually address the concerns of most patients, some have physical or existential suffering that is refractory to comfort and supportive care. Consequently, these patients sometimes persist in their requests for help with a hastened death. Because many clinicians are unsure how to respond to such requests, here we clarify the status of medical aid in dying laws and one important, yet still obscure, option for terminally ill patients looking to end their lives: voluntarily stopping eating and drinking.
Medical Aid in Dying Laws
DUE TO FREQUENT and widely publicized state legislative committee hearings and voter ballot initiatives across the country, the most conspicuous legal option for terminally ill patients to gain physician assistance in dying is in Death With Dignity, or medical aid in dying, laws, which allow physicians to prescribe life-ending drugs to terminally ill patients. Eight jurisdictions in the United States now permit physicians to write a life-ending prescription for terminally ill patients with decision-making capacity and allow patients to self-ingest the drug to end their lives. Most recently, in April 2018, Hawaii joined California, Colorado, Montana, Oregon, Vermont, Washington state, and Washington, DC, to affirmatively legalize medical aid in dying.
The rapid expansion of authorized medical aid in dying over the past 3 years (doubling from four to eight jurisdictions) is especially relevant to oncologists. Nearly 80% of patients using medical aid in dying qualify for the assistance because of malignant neoplasms, especially of the breast, colon, pancreas, and prostate. Decades of robust data show that many terminally ill patients with cancer in the United States have welcomed this choice. Since 1998, thousands have hastened their deaths through medical aid in dying. Thousands more never ingested the medication yet still benefited from knowing that it was available to them.2 In short, medical aid in dying has proven to be a valuable end-of-life option for some patients.
Nevertheless, there are several reasons medical aid in dying is often not an available alternative for terminally ill cancer patients when their dying process becomes unbearable. First, medical aid in dying remains illegal in 49 jurisdictions. Although more states are likely to legalize the process over the next few years, medical aid in dying will not be an option in most of the country for more than a decade. Second, even where it is already legal, medical aid in dying laws impose strict eligibility conditions and process requirements, including mandatory waiting periods, which many patients cannot satisfy. Third, even without legal hurdles, the process for obtaining the life-ending medication is complicated and burdensome. For example, it is difficult for patients to find a physician willing to prescribe the drug. And, fourth, because medical aid in dying is morally unacceptable to some patients, they are unlikely to take advantage of the law even if they have access to it.
As a result, some physicians and patients are examining other options for hastening death, such as refusing all food and liquids with the understanding that doing so will quicken death.
Voluntarily Stopping Eating and Drinking
IN CONTRAST to medical aid in dying laws, there is no need to affirmatively legalize voluntarily stopping eating and drinking, because patients already have well-established rights to refuse unwanted medical interventions. Therefore, voluntarily stopping eating and drinking is available in 56 jurisdictions instead of just 8. Also, since there is no authorizing statute for voluntarily stopping eating and drinking, there are no overly restrictive safeguards against its use. In short, at least from a legal perspective, patients have far greater access to voluntary stopping eating and drinking than to medical aid in dying services.
“Voluntarily stopping eating and drinking has long remained an underutilized and almost underground end-of-life option for terminally ill patients, but that feeling is changing.”— Thaddeus Mason Pope, JD, PhD
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Although voluntarily stopping eating and drinking entails ceasing oral intake of all food and fluids, except for small amounts necessary for mouth comfort or taking medication, patients have decision-making capacity and are physically capable of resuming nourishment by mouth if they change their minds. Once patients make an explicit and deliberate decision to stop food and fluid intake with the goal of hastening their death, dehydration typically leads to death within 10 to 14 days.3,4 Unlike some other types of medically assisted death, both data-driven studies and voluminous anecdotal evidence show that voluntarily stopping eating and drinking is peaceful, painless, and dignified.5,6 When properly supported, voluntarily stopping eating and drinking enables a comfortable, “good quality” death, as witnessed in the documentary Dying Wish, which follows the life of Dr. Michael Miller, a retired surgeon with end-stage cancer who decided to stop eating and drinking, so his life would not be prolonged, and to show others that the process was “gentle and natural.”7,8
Legitimate Treatment Option for Suffering
DESPITE STUDIES showing it is safe and effective, voluntarily stopping eating and drinking is just now gaining wider understanding and acceptance among physicians and patients as a legitimate treatment option for addressing end-of-life suffering. Because patients can theoretically perform voluntarily stopping eating and drinking independently from clinician assistance, voluntarily stopping eating and drinking has struggled to gain recognition as a treatment option.9 It is only in the past 4 years that voluntarily stopping eating and drinking has moved under the umbrella of standard medical care. For example, although patients can accomplish voluntarily stopping eating and drinking without clinician input, it is now strongly discouraged. Clinician involvement is important for “pre-intervention assessment, anticipatory guidance, medical treatment of symptoms, and emotional support.”3,4
Today, clinicians can turn to practice pointers in leading medical journals to learn about the care management and ethical and legal aspects of voluntarily stopping eating and drinking4; they can reference clinical practice guidelines published by international professional associations.10 And still more model voluntarily stopping eating and drinking care policies and procedures are on the way.
Ethically and Legally Appropriate End-of-Life Option
ALTHOUGH THERE are now more evidence-based recommendations to help clinicians evaluate, counsel, and manage symptoms related to voluntary stopping eating and drinking, the absence of available protocols has not been the only obstacle to its use. Clinicians have also been uncertain of the ethical and legal status of voluntarily stopping eating and drinking.
However, lawmakers and health-care societies have been clarifying the legitimacy of voluntarily stopping eating and drinking. Both national and international professional associations have published policy position statements supporting the use of voluntarily stopping eating and drinking.11-13 For example, a 2017 position paper from the American Nurses Association (ANA) on end-of-life care stated: “The acceptance or refusal of clinically appropriate food and fluids, whether delivered by oral or artificial means, must be respected, provided the decision is based on accurate information and represents patient preferences.... This is consistent with ANA’s values and goals of respect for autonomy, relief of suffering, and expert care at the end of life.”13 (Editor’s Note: Although ASCO has not specifically addressed the use of voluntarily stopping eating and drinking as a means for patients to hasten their death and has not taken an official position on physician-assisted suicide, in a 1998 position statement on high-quality end-of-life care, which neither supported nor condemned the practice, the Society recommended that physicians engage their patients in discussions about their concerns regarding how they might die, explain what comfort care will be provided, and assure patients they will not be abandoned.14)
In addition to ethical concerns, clinicians have had legal apprehensions about facilitating voluntarily stopping eating and drinking, because there have been few court cases and little legislative guidance on the matter. But this has been changing. In February 2018, the College of Physicians and Surgeons of British Columbia, the provincial board of medicine, confirmed the legality of using voluntarily stopping eating and drinking to hasten death in terminally ill patients.15 In a separate case, the Supreme Court of British Columbia held that “adults have a common law right to consent or refuse consent to personal care services [including] oral nutrition and hydration.”16 Because of shared common law principles and history, these Canadian decisions have persuasive force in the United States. Indeed, the Hawaii legislature expressly recognized the legality of voluntarily stopping eating and drinking in April 2018.17
“Oncologists should be prepared to discuss voluntarily stopping eating and drinking as a means to hasten death with their terminally ill patients who ask about it.”— Thaddeus Mason Pope, JD, PhD
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Moreover, even without explicit approval, well-established principles of health-care decision-making support the individual’s decision to voluntarily cease oral intake.5 People have the right to refuse life-sustaining treatments, and clinicians must honor these requests. Attempts to forcibly feed or nonconsensually perform invasive procedures, such as placing a feeding tube in a patient, would be considered battery.
Distinction Between Active and Passive Paths to Death
SOME CLINICIANS are concerned that participating in voluntarily stopping eating and drinking constitutes assisted suicide, but this apprehension is misplaced. The law clearly distinguishes between active processes causing death (like medical aid in dying) and passive acts of allowing natural death (like voluntarily stopping eating and drinking). Although the definitions of assisted suicide vary from state to state, clinicians whose role is limited to symptom management are probably exempt from state prohibitions.4,5,18
In short, there is now a broad consensus that voluntarily stopping eating and drinking is a clinically, ethically, and legally legitimate end-of-life option for terminally ill patients with decision-making capacity. The remaining unanswered questions do not concern the use of contemporaneous voluntarily stopping eating and drinking but rather the implementation of “advance voluntarily stopping eating and drinking” for patients who are now incapacitated, usually by dementia. Policymakers and members of advocacy organizations are wrestling with the special challenges of whether clinicians may or should follow the wishes of incapacitated patients who left instructions for voluntarily stopping eating and drinking or whose surrogates request voluntarily stopping eating and drinking on their behalf.19,20
Conclusion
DUE TO A dearth of clinical and legal guidance, voluntarily stopping eating and drinking has long remained an underutilized and almost underground end-of-life option for terminally ill patients, but that feeling is changing. Today, with more medical literature and judicial clarification, the clinical, ethical, and legal status of voluntarily stopping eating and drinking is better established. Oncologists should be prepared to discuss voluntarily stopping eating and drinking as a means to hasten death with their terminally ill patients who ask about it. ■
DISCLOSURE: Dr. Pope reported no conflicts of interest.
Dr. Pope is Director of the Health Law Institute and Professor of Law at the Mitchell Hamline School of Law in Saint Paul, Minnesota (www.thaddeuspope.com).
Editor’s Note: The Law and Ethics in Oncology column is meant to provide general information about legal topics, not legal advice. The law is complex, varying from state to state, and each factual situation is different. Readers are advised to seek advice from their own attorney.
Disclaimer: This commentary represents the views of the author and may not necessarily reflect the views of ASCO or The ASCO Post.
REFERENCES
1. Ivanović N, Büche D, Fringer A: Voluntary stopping of eating and drinking at the end of life: A ‘systematic search and review’ giving insight into an option of hastening death in capacitated adults at the end of life. BMC Palliat Care 13:1, 2014.
2. Oregon Health Authority: Death with Dignity Act. Available at www. oregon.gov/oha/PH/ProviderPartnerResources/EvaluationResearch/ DeathwithDignityAct/Pages/index.aspx. Accessed June 6, 2018.
3. Wax JW, An AW, Kosier N, et al: Voluntary stopping eating and drinking. J Am Geriatr Soc 66:441-445, 2018.
4. Quill TE, Ganzini L, Truog RD, et al: Voluntarily stopping eating and drinking among patients with serious advanced illness—Clinical, ethical, and legal aspects. JAMA Intern Med 178:123-127, 2018.
5. Pope TM, Anderson L: Voluntarily stopping eating and drinking: A legal treatment option at the end of life. Widener Law Review 17:363-428, 2011.
6. Pope TM: Narrative symposium: Patient, family, and clinician experiences with voluntarily stopping eating and drinking (VSED). Narrative Inquiry in Bioethics 6:75-126, 2016.
7. Vetter P: “Dying wish” documents: Death of Dr. Michael Miller with conscious choice to stop eating and drinking. Am Chronicle, July 28, 2008.
8. Dying Wish Media. Available at www.dyingwishmedia.com. Accessed June 6, 2018.
9. Rodríguez-Prat A, Monforte-Royo C, Balaguer A: Ethical challenges for an understanding of suffering: Voluntary stopping of eating and drinking and the wish to hasten death in advanced patients. Front Pharmacol 9:294, 2018.
10. KNMG Royal Dutch Medical Association, V&VN Dutch Nurses Association: Caring for people who consciously choose not to eat and drink so as to hasten the end of life. Available at KNMG-Caring-for-people-who-consciously-choose-not-to-eat-and-drink-so-as-to-hasten-the-end-of-life-january-2015-v1.pdf. Accessed June 6, 2018.
11. Tucker KL: Aid in dying: an end of life option in Hawaii. American Medical Women’s Association, September 9, 2007.
12. Radbruch L, De Lima L: International Association for Hospice and Palliative Care response regarding voluntary cessation of food and water. J Palliat Med 20:578-579, 2017.
13. American Nurses Association: Position statement: Nutrition and hydration at the end of life. 2017. Available at https://www.nursingworld.org/~4af0ed/globalassets/ docs/ana/ethics/ps_nutrition-and-hydration-at-the-end-of-life_2017june7.pdf. Accessed June 6, 2018.
14. [No authors listed]: Cancer care during the last phase of life. J Clin Oncol 16:1986-1996, 1998.
15. College of Physicians and Surgeons of British Columbia: Final Disposition Report of the Inquiry Committee, CPS File No. IC 2017-0836. Available at http://eol.law.dal.ca/ wp-content/uploads/2017/11/College-letter-.pdf. Accessed June 6, 2018.
16. Bentley v Maplewood Seniors Care Society, 2014 BCSC 165, para. 84, Feb. 3, 2013.
17. Hawaii Our Care, Our Choice Act, H.B. 2739, signed April 5, 2018. Available at https://governor.hawaii.gov/wp-content/uploads/2018/04/DOC009.pdf. Accessed June 6, 2018.
18. Pope TM: Voluntarily stopping eating and drinking (VSED) to hasten death: May clinicians legally support patients to VSED? BMC Med 15:187, 2017.
19. End of Life Choices New York: New advance health care directive developed for those who fear dementia, April 4, 2018. Available at http://endoflifechoicesny.org/wp-content/uploads/2018/05/Dementia_adv_dir_release_final.pdf. Accessed June 6, 2018.
20. Brody JE: Alzheimer’s? Your paperwork may not be in order. The New York Times, April 30, 2018.
