Clinical Issues

All seriously ill persons should complete advance directives specifying indications for limiting future provision of food and fluids. AD’s for SED specify When oral intake is to be limited and What limitations are to be imposed. Two categories include: (1) withholding all assisted oral intake from a person who has lost decision-making capacity, and previously indicated her wish to not receive any assisted feeding, and (2) Comfort Feeding Only (CFO) which involves providing as much or as little food and fluid as the patient seems to desire. CFO has three subcategories: (a) “Self-feeding only”—limiting oral intake to what the patient is able to self-administer. (b) Both “self-feeding” and “caregiver assisted-feeding” in whatever amount the patient enjoys. (c) “Minimum Comfort Feeding Only” is a modification for those who had expressed a desire to SED but lost decisional capacity before implementation, but now seem to desire food or fluid.

Best Practices, Enduring Challenges, and Opportunities for VSED

VSED begins with excellent symptom management supported by experienced clinicians. VSED is largely patient controlled, but involvement of experienced palliative care providers and family is strongly recommended. Decision making capacity is frequently lost late in the process as death nears, so written advance directives to continue withholding food and fluids should be completed prior to initiating VSED to forestall any misunderstandings of the patient’s wishes. Challenges associated with VSED include its two week duration before death, the personal determination required, and the possibility of delirium in the latter stages that potentially compromises the commitment to forgo fluids. These challenges should be anticipated and planned for. The primary advantages of VSED include: 1) predictable two week duration from initiation to death; 2) alertness for the early phase, 3) no terminal illness requirement, 4) largely under the patient’s control, and 5) awareness of the possibility of VSED can provide comfort to those worried about unacceptable future suffering.

Clinical Issues

VSED requires a decisionally capable, seriously ill patient who makes an informed choice to intentionally hasten death because of unacceptable current suffering or fear of imminent future suffering. In addition to being well informed and determined, patients must have access to ongoing caregiving support and a committed clinician partner. The treating clinician must carefully evaluate the reasons for the patient’s request and her decision-making capacity. Most patients who forgo all oral intake, food and liquids, die peacefully from dehydration within ten to fourteen days. Difficult symptoms of thirst and dry mouth can be adequately relieved with good oral care and access to medications to relieve additional distress. Many patients will be reassured by awareness of the option of VSED even if they never actually exercise it. Completion of advance directives (both health care proxy and instructional) as well as MOLST forms are recommended for anyone initiating VSED, as many patients lose decision-making capacity late in the process.

Introduction

Voluntary stopping eating and drinking (VSED), though relatively unknown and poorly understood, is a widely available option for hastening death. VSED is legally permitted in places where medical assistance in dying (MAID) is not, and unlike U.S. jurisdictions where MAID is legally permitted, VSED is not limited to terminal illness or to those with current decision-making capacity. With adequate clinician and caregiver support, VSED is a compassionate option that respects patient choice. Moreover, the practice is not limited to avoiding unbearable suffering, but may also be used by those who are determined not to live long with unacceptable deterioration such as severe dementia. Despite the misleading image of “starvation,” death by VSED can typically be peaceful and meaningful when accompanied by adequate clinician/caregiver support. VSED is, however, “not for everyone,” and this volume provides a realistic, appropriately critical as well as supportive assessment of the practice. Eight illustrative, previously unpublished real cases are included, receiving pragmatic analysis in each chapter. The volume’s integrated, multi-professional, multidisciplinary character makes it useful for a wide range of readers: patients considering end-of-life options and their families, clinicians of all kinds, ethicists, lawyers, and institutional administrators. Appendices include recommended elements of an advance directive for stopping eating and drinking and what to record as cause of death on the death certificates for those who hasten death by VSED.

Illustrative Cases

Four stories of real patients considering VSED who would prefer to continue living until decision-making capacity is lost, and then have others start the stopping eating and drinking (SED) process on their behalf are described. Waiting until this stage potentially protects patients from having to initiate VSED before they really want to, but it also places considerable burdens on surrogate decision-makers who must activate the SED process based on the patient’s prior statements and formal advance directives (ADs). ADs for SED can help guide the timing, but a now-incapacitated patient who is very hungry and thirsty may not comprehend why he is not being provided food and drink. Patients and surrogates should consider in advance how to weigh statements of the “then-self” versus the “now-self” in subsequent decision-making. Four cases of SED by AD are explored, including some of the challenges and opportunities raised by allowing this possibility.

Ethical Issues

Voluntary stopping eating and drinking (VSED) has strong similarities to refusing treatment, with a person’s right to use VSED nearly as firm as the widely accepted right to refuse lifesaving treatment. VSED is less similar to medical assistance in dying (MAID), and the moral justification of allowing MAID is more problematic than the justification of VSED, in part because of the more direct involvement of clinicians. MAID and VSED share some of the same challenges, however, including criticism that they both involve suicide and assisting suicide. VSED survives those challenges well without depending on specific statutory exemption for caregivers from constituting assistance in a suicide as MAID does. Whether to inform potentially interested but unaware patients of VSED as a permissible option requires sensitivity to variations among individual patients and often difficult discretionary judgment.

Legal Issues

This chapter clarifies the legality of VSED for patients, families, and clinicians. Both clinicians and medical societies widely perceive VSED to be legal. While there continues to be variability, particularly in long-term care settings, legal uncertainty is generally not a significant barrier when the patient has decision-making capacity. Courts have repeatedly authorized VSED, and VSED falls squarely within broader, well-settled rights to refuse treatment and care. After establishing a patient’s right to VSED and a clinician’s correlative duty to honor that choice, the chapter explains why VSED probably does not constitute (1) the crime of assisted suicide, (2) the neglect of a vulnerable adult, or (3) a basis to invalidate life insurance policies. The chapter concludes by noting that while clinicians may have affirmative duties to discuss VSED, they also have rights to conscientiously object to participating.

Illustrative Cases

Four stories of real patients who considered and then activated plans to voluntarily stop eating and drinking (VSED) are presented. Each had unique personal and clinical circumstances, but all wanted to know what “escape options” might be possible if their anticipated or actual suffering or deterioration became unacceptable to them. Most were initially unaware of VSED as a life-ending option until informed by the treating clinicians, and some were disappointed that they could not receive medical aid in dying, which they clearly would have preferred. The process of becoming aware and then ultimately choosing and completing VSED are explored. The prospect of losing decision-making capacity late in VSED and expressing a basic desire for food and drink should be anticipated and planned for. VSED was ultimately effective in helping these patients achieve a wished-for death, but the process was not without challenges.

Ethical Issues

The implementation of advance directives to withhold food and water by mouth faces significantly more challenges than VSED by persons with decision-making capacity, though with sufficient care and attention, many of these can be resolved. Reduced awareness may leave the person with little understanding of her directive or no awareness at all. In severe dementia, is behavioral expression of a simple desire for food or drink a relevant change of mind about the directive, or by then does the person no longer have the capacity to make such a change? How relevant is the moral distress that caregivers and health care agents will often experience when implementing the person’s directive, or when they are unable to get it implemented? Patients in severe dementia also may be relatively content, with little pain and suffering—is the deterioration itself, without pain and suffering, a legitimate reason for implementing a VSED directive?

Best Practices, Enduring Challenges, and Opportunities for SED by AD

SED by AD begins with an advance directive specifying what eating and drinking limitations the person desires if decision-making capacity is lost and when to begin them. Both written and video instructions are recommended. SED by AD potentially prevents a preemptive choice to VSED by those still enjoying life but wanting to avoid a prolonged dementia death. Challenges to implementation include uncertainty about legality, and concerns about a patient’s possible ‘change of mind’ once capacity is lost. Family members and caregivers may become distressed about how to respond to subsequent requests for food or fluid. Should caregivers respond to the ‘then’ capacitated person who previously completed the directive or the ‘now’ incapacitated person who seems to want oral feedings? Ideally an AD for SED also articulates how caregivers should respond to apparent desires for fluids. Comfort feeding only (CFO) should be the ‘back up’ plan if SED by AD proves to be too difficult for the patient or caregivers.