Hastening Death by Voluntarily Stopping Eating & Drinking
Why Do Some Consider This Option? Why Should They? What Should They Know Before Proceeding?
By Judith Schwarz, PhD, RN
Ruth* was 93 when she made her decision to stop everything that was keeping her alive. She was DONE! She called her son and daughter and asked them to be with her when she initiated her plan to end her life by voluntarily stopping eating and drinking (VSED). She knew she could no longer stay safely alone at home. COVID had eliminated visits with neighbors, she could no longer care for her garden or herself, yet she remained fiercely independent and determined to never go to a nursing home.
She knew about VSED because, five years earlier, her husband, who was receiving hospice care, also made that decision. Ruth spoke with me during her husband’s experience. I am a nurse, and for two decades have been the Clinical Director of an end-of-life advocacy and support organization in New York State and provide consultations about end-of-life options and choices.
Ruth knew she had to be enrolled in hospice to obtain the palliative medications she might need to treat any VSED-related symptoms and her underlying medical conditions. She needed her physician’s support to obtain a hospice referral. Once that was done and her children arrived, she began to fast. I spoke to her each day during the first week; she remained resolute, calm, and comfortable. When she became too weak to speak by phone I spoke regularly with her children, and answered questions and offered emotional support. She died peacefully after 11 days.
Ruth would have preferred to receive a drug from her physician that she could take and not wake up. She chose VSED because it was her only legal option to hasten her death.
She was not the only person who said, “I’m done. What can I do to escape this life?” These are often elderly individuals who endure multiple chronic, incurable and progressive illnesses that make them miserable and diminish their quality of life. They often had to give up previous lives of independence and accept ‘strangers’ into their homes to help them safely manage activities of daily living, often at the insistence of distant family members.
Even for those in the terminal stage of an illness, New York State does not permit a person to legally obtain a physician’s assistance in dying by providing a prescription for life-ending medication. In states where medical aid in dying (MAID) is not a legal option, the only legal option for a patient-controlled, hastened death is to VSED. At the time of this article, (February 2021), only nine states and the District of Columbia have MAID laws, though more states are expected to legalize this option in the future.
Most people living with incurable or terminal illnesses will not choose to hasten their death, particularly if they receive good hospice or palliative care. Palliative care is understood as the provision of psycho-social, spiritual, and physical symptom relief provided by a team of expert clinicians. Hospice care provides the same array of symptom relief to those who are likely to die of their disease within six months. Although most suffering individuals do not choose to hasten death, many will think about doing so, and may be comforted by knowing they have options. VSED is one of those options.
My goal is to help those who contact me to make informed decisions about their own end of life — and doing so requires understanding the expected benefits and likely burdens associated with proposed interventions. Each person must clarify their personal values and end of life wishes as their disease progresses. For some it may be to live as long as possible with aggressive use of life-prolonging measures. Others may prefer to stop life-prolonging treatment and focus their care on improving their quality of life rather than prolonging life. A smaller proportion of individuals may seek to hasten their deaths. VSED is an option that permits personal control over the timing of death and is the focus of this article.
What is VSED?
VSED is an intentional act to hasten death by stopping the intake of further food and fluids, along with forgoing all other life-prolonging measures. Persons who hasten death by VSED do so when their suffering from an incurable or terminal illness becomes unbearable despite receiving good symptom management, and they realize no other option exists that permits control of the timing of their death. It is a very difficult decision, as is any decision to hasten death.
Who Decides to Hasten Death by VSED?
Why would anyone choose to die of starvation you may wonder. Starvation is usually considered an awful death and typically is, however, the cause of death in VSED is not starvation, but dehydration. When a person who chooses to VSED receives appropriate hospice or palliative support, their deaths are often quite peaceful and pain-free. In my experience, persons who choose to VSED fall into one of several clinical groups:
The first category consists of the persons, like Ruth, who conclude, “I’m done.” In the second category are those diagnosed with an incurable and progressive, or terminal disease. Judith had lived with Parkinson’s disease for most of her adult life and yet was able to enjoy a successful professional life and a long and happy marriage. But eventually, her symptoms escalated and the drugs no longer worked to control her tremors and muscle pain. Judith could no longer work, needed a wheelchair, and was confined to her apartment. Her pain became an increasing problem to manage.
She fell and broke a hip which required surgical repair and a hospital stay. She experienced increasing amounts of pain post-operatively; she kept telling her husband she wanted to die because her quality of life was unacceptable to her. Judith knew about VSED and understood that it was her only option to control the timing of her death, but it was a hard decision to make. She loved her husband and didn’t want to leave him. She was ambivalent about taking definitive steps to intentionally hasten her own death.
Eventually her physician referred her to hospice for pain management, although there was no certainty she was in the ‘terminal’ stage of Parkinson’s disease. She became bed-bound, but now had access to hospice to help with pain management and hired aides for her physical care. Judith repeatedly stated how much she wanted to die. She began to VSED only after she concluded it was the only way to escape her unbearable condition. She too would have much preferred her physician provide her with a prescription for a lethal amount of medication. The goal of her care became keeping her as sleepy as possible so she neither experienced pain nor the desire to eat or drink. She died two weeks after this approach began.
The third broad category of patients who consider VSED are those who have been diagnosed with an early stage of Alzheimer’s disease (ALZ), some other form of dementia, or another condition that in time will lead to a permanent loss of decision-making capacity. Most of the people in this category were recently diagnosed with an early stage of ALZ. Many had painful memories of the ALZ-related death of a loved one, who may have died in a nursing home, after years of deterioration until no longer able to recognize loved ones, communicate, or provide any self-care. In this ‘terminal’ stage, the patient must be hand fed in order to continue to live.
These individuals with early dementia were desperate to know what they could do now to avoid the terminal stages of ALZ. We would discuss all of their options, including their ‘right’ to make a preemptive decision to VSED before they lost capacity (if they were very determined to do so). I counseled them and their family members about the challenges of implementing such a plan.
None of the patients with early dementia I have counseled have followed through with their intended plan to preemptively VSED while they still retained the cognitive ability to do so. There are likely several reasons for that, but in addition to the loss of short-term memory that occurs in the early stages of dementia, there is also a diminishment in ‘executive function’ — the ability to make plans and successfully carry them out. In these counseling sessions we also discussed the potential benefits of having a ‘back-up plan’ by completing an advance directive that stipulates when and how to limit future assisted oral feeding once their dementia becomes advanced.
Chris’ story illustrates the challenges faced by persons with an early-stage of dementia. He was only 45 when he was diagnosed with ‘early onset’ ALZ. He had been a successful investigative journalist before he and his wife consulted me. We thoroughly discussed VSED and as a ‘back up plan,’ he also completed a written advance directive to stop eating and drinking, to be implemented if and when he could no longer self-feed and was in an advanced stage of dementia.
Chris and his wife together developed a plan that would involve his wife and his neurologist, who would alert him when his impending loss of decision-making capacity was looming. He agreed that when informed that his ‘decision-making window’ was soon to close he would begin to VSED. But he never was able to do that. His wife kept warning him that he was losing capacity and was going to soon run out of time to carry out his plan. He claimed to understand that reality but was unable to act upon it. His wife found this very difficult to understand and accept. She subsequently told me she had made arrangements for them to travel to Switzerland where he received direct medical assistance in ending his life.
Reasons for Considering VSED
- Each person in these cases experienced suffering or pain that was difficult to relieve with palliative medication.
- These individuals had no good alternative means to hasten death. They were not receiving life-prolonging interventions or treatments, such as an implanted cardiac defibrillator or kidney dialysis that could be discontinued in order to cause death.
- There was no state-sanctioned access to medical aid in dying where they lived.
- VSED is almost completely under the patient’s control, and no one’s permission is necessary to implement the choice. Although a person could proceed to VSED without clinician support, all practitioners familiar with VSED strongly recommend palliative or hospice medical oversight.
- VSED is legal in all U.S. states, provided the patient is decisionally-capable and voluntarily makes the decision.
What Needs to be in Place for a Peaceful VSED Death to Occur?
- At the heart of a VSED decision there must be a determined, well-informed, and decisionally-capable person who makes a thoughtful and deliberate decision to hasten death because of intolerable suffering. All caregivers must be aware of the likely challenges ahead and have a plan to address those challenges — in particular, the probability that the patient will lose decisional capacity as death nears.
- If there is any question about the patient’s capacity to make decisions, a clinician-provided assessment should occur to insure informed and voluntary consent to VSED. The patient should also complete or update several advance directives, including the appointment of a health agent, with whom end of life wishes are discussed. The appointed agent can be a family member or close friend who agrees to advocate for the treatment decisions chosen if, in the future, the individual is unable to participate in treatment decision making. Other important directives include “Do Not Resuscitate Order” completed by the physician or a ‘Medical Order for Life Sustaining Treatment’ (MOLST). It is recommended that the patient also complete a written advance directive that stipulates the continuation of the decision to forgo oral intake if capacity is lost.
- Family members or close friends who remain present throughout the process provide important support. They function as companions who will journey along with the patient and provide understanding and compassion during the VSED process. ‘Round the clock’ caregivers may become necessary as the patient weakens and becomes bed bound.
- The final necessary item is an experienced clinician ‘partner’ who provides palliative or hospice oversight throughout the dying process, and medications to manage unwanted symptoms.
What Patients and Care-Givers Should Know About the VSED Dying Process
There is a beginning, middle, and end to a VSED dying process. Patients and their caregivers must know what to expect in each stage and understand how the process will likely unfold. At the beginning, a determined individual initiates VSED with the goal of forgoing all oral intake and dying of dehydration. The decision about whether or when to begin to VSED is entirely up to the person, as is the decision each day about whether to continue.
During the first week of the fast, feelings of hunger usually disappear within two to three days. However, feelings of thirst or a dry mouth are more challenging for many patients. Frequently swishing and spitting cool water is an effective way to relieve feelings of thirst or dry mucus membranes. A fine mist sprayed at the back of the mouth along with excellent oral care can relieve feelings of dryness. Good oral care is very important part of providing comfort. The patient and caregivers must remember that even small amounts of water or ice chips may prolong the dying process. Small doses of sedating and anti-anxiety medications should be provided if the patient is uncomfortable.
The Middle Stage begins towards the end of the first week. Patients will become bedbound and begin to sleep for longer periods of time. This can be an appropriate time for family members and close friends to gather, share memories, engage in life review, and begin to say goodbyes.
For patients who were terminally ill when they begin to fast, the average length of time from beginning to VSED until death is usually 7 to 10 days, depending upon their underlying physical condition and extent of disease. As death nears and major organs begin to fail, it is not uncommon for patients to experience delirium, agitation, and loss of decisional capacity. Family members should be prepared for this possibility and be aware that these symptoms can be effectively managed by palliative medication. Patients often slip into a coma in the days or hours before death.
For patients who are not terminally ill, this middle stage of the VSED process can be challenging as family members and the patient become weary. Everyone wants to know “How much longer?” but it’s hard to predict when death will occur. Depending upon pre-VSED physical conditions and how diligently fluids are avoided, it may take two to three weeks of fasting before death by dehydration occurs.
During the ‘final stage’ of the VSED process — in the last days or possibly week before death, patients will usually lose decision-making capacity and along with that, their resolve to forgo fluids. They will no longer remember the VSED plan or why they are not being given what they may seem to want to drink. This should be discussed ahead of time with the patient, family, and caregivers who agree about how caregivers ought to respond. Because of this future loss of capacity, an advance directive that documents the intention to continue to forgo oral intake should be written.
What Else Do Patients and Families Want to Know?
Two frequently asked questions include whether VSED is legal and whether it is suicide. The question about suicide often includes concern about whether family members (or clinicians) who support a patient’s decision to VSED might be legally or morally culpable for doing so.
Is VSED Legal?
While there are currently no state statutes or judicial rulings that specifically address the legality of VSED when chosen by a competent adult, most legal scholars, ethicists, and clinicians who treat dying patients agree on its presumed legality. They base that judgment upon the well-established legal right of a competent person to refuse unwanted medical interventions and their right to bodily integrity and to be free from unwanted bodily intrusions. Competent persons do not lose their right to autonomy once capacity is lost; their self-determined treatment choices can be carried forward by a properly appointed health care agent armed with a carefully written advance directive.
Is VSED an Act of Suicide?
Suicide is legal in all U.S. states, although assisting in a suicide is not. When a person with decision-making capacity chooses to forgo further life-sustaining treatments there is a legal and ethical consensus that the cause of death is the underlying disease or condition, not suicide, and not the removal of life-support. Discontinuing unwanted treatments removes a technological barrier, thus permitting the patient to die ‘naturally’ of their underlying disease. Such decisions are routinely made by patients or their families with clinician support.
Unlike the discontinuation of life-prolonging measures that ‘allows’ death to occur, when a patient chooses to forgo food and fluid, doing so seems closer to suicide in that the patient has voluntarily initiated the cause of death, specifically, dehydration. The ‘traditional’ understanding of suicide is generally associated with impulsive acts, occurring in secret, without awareness or support by loved ones. There may also be underlying psychiatric conditions and a history of substance abuse. None of these aspects are present in VSED which requires thoughtful planning and collaboration with care-givers, clinicians and loved ones.
Is intentionally hastening or causing one’s own death morally wrong? For persons who have determined that death is preferable to the existence they must endure as a result of an advanced and/or painful disease, death is not an evil to be avoided but a welcome blessing. Of course, persons with strong religious values and some others may disagree.
Family members or other care givers may be concerned about whether it may seem that they are assisting in a suicide if they remain present and provide emotional or caregiving support to someone who chooses to VSED. When others provide a caring presence throughout a person’s intentional fast, no ethical or legal harm is done.
In the End
Most individuals who inquire about legal ways to hasten death will not take steps to do so. Yet, even when they do not choose to implement VSED, many are comforted by knowing they have ‘an escape’ if their suffering becomes unbearable. VSED is not for everyone, to intentionally hasten one’s death requires great resolve and determination. Yet, it remains a widely available option for use by suffering patients without an alternative to escape further suffering.
*All names have been changed.
Judith Schwarz, PhD, RN. Is the Clinical Director of End of Life Choices New York and provides consultations to those seeking information about options and choices as the end of life nears. She can be contacted at Judith@endoflifechoicesny.org