The late brilliant and irreverent physicist Richard Feynman, who ingeniously demonstrated the O-ring as the cause of the 1986 Challenger Space Shuttle tragedy by chilling it in a glass of ice water during a presidential committee hearing, was known to counsel his students on their first day of class: “I would rather have questions that can’t be answered than answers that can’t be questioned.” So, what do shutting your mouth and losing your mind have in common with a faulty O-ring and a disintegrating Space Shuttle?
Both share tragic consequences.
When Dr. Feynman dropped the chilled O-ring on the table, it shattered, providing the presidential commission with an answer that could not be questioned. However, when a living will indicating that a person does not want to be fed if they become incapacitated or afflicted with dementia is placed on a table before judges, it is being questioned. The questions are not about the technologies of feeding, such as NGTs (nasogastric tubes), PEG tubes (percutaneous endoscopic gastrostomy), or J-tubes (jejunostomy tubes), which no one disputes your present, competent self can deny to your future, incapacitated self. The challenge is not about what comes from the tangle of modern technology; it is about what comes from the law of human nature – the opening of the mouth when offered a spoonful of food.
The legal challenge is specifically this: Can your present, competent self prohibit your future, incapacitated self from being fed by mouth if your brain opens your mouth, chews, and swallows? In other words, can you insist that your caregivers let you starve to death when are no longer yourself? This question has gone to court, and the courts have had a simple answer: No, you cannot.
How did we get to this question, which can be answered with something that right now cannot be questioned? We got to this point via VSED – voluntarily stopping of eating and drinking.
VSED may be as old as mouths and food, but with the rise of the concept of a right to die, it has become more than an acronym – it has become a solution to suffering that palliative care cannot not provide thoroughly enough or quickly enough for patients. The number of patients refusing to eat or drink to hasten their death is increasing. VSED has been written about in major medical journals such as the New England Journal of Medicine (NEJM) and Journal of the American Medical Association (JAMA), commented about in major newspapers such as the New York Times (NYT), been the subject of its own conference, and more.
So, what happens when you VSED yourself? Physiologically, a normal, healthy adult will die in about seven days without food and without water, but it will take about seven weeks without food but with water. Death from VSED is not death from starvation; it is death from dehydration. VSED is not a hunger strike. Even veteran and venerable hunger strikers such as Mahatma Gandhi drank water. VSED is a water strike.
The more debilitated the person and the more diseased their organs, the quicker death occurs. But the problem with death is not being dead, but getting dead. Getting dead is the difficult part. VSED can lead to quiet coma or to disquieting distress. VSED is also not a solitary undertaking. It takes a resolute patient and loved ones equally resolved to see it through. While some VSED deaths are peaceful, while others are not. Finally, medications may be necessary to insure that a VSED death is a comfortable death.
There is no law that prohibits a competent patient from VSED. Just like medical treatment, an informed, competent individual can refuse food and water. So unlike physician-assisted death (PAD), which is legal in five states, VSED is legal in all 50 states. VSED only requires a firm resolve. But while PAD leads to death in minutes to hours, VSED takes days to weeks, which allows patients to say their goodbyes, and perhaps most crucially, change their minds. Some patients attempt VSED several times before successfully seeing it through to the end. Others abandon VSED altogether.
In the July 24, 2003 issue of the NEJM, the pros and cons of VSED in Oregon (where again, PAD is legal) were detailed, including “good deaths” and “bad deaths.” In an accompanying NEJM “Perspective,” the discomfort in feeling “complicit” in giving permission to go on a hunger strike for death was raised by caregivers. Despite this discomfort, all caregivers agreed that they had to help allay the suffering of their loved ones. Three years later, in her Oct. 21, 2016 NYT column “The New Old Age,” Paula Span reported finding from the Netherlands statistics on 99 cases of VSED. Eighty percent died as they wished after an average fast of seven days.
Dr. Timothy Quill, who has written extensively about PAD, has also written a clear-eyed assessment of VSED and provided thoughtful guidelines in the July 27, 2015 issue of the Annals of Family Practice. If you are intrigued by VSED, start your reading here. The article’s bibliography can answer any questions the article does not.
So, what if an incapacitated patient with a VSED advance directive is admitted to your hospital? What if this patient remains under your care? What if this patient is a loved one? Is your hospital prepared, is the doctor prepared, is the family prepared, and are you prepared? Do you offer food to the patients who cannot feed themselves if their advance directive countermands this? Is the patient even the same person who wrote the advance directive? What does dementia take away and what does it leave behind?
After years of end-of-life discussions, caregivers involved in palliative care have learned that most families who may readily give permission to stop curative therapy and offer comforting medication will still struggle with stopping food and water, even to their unconscious loved ones. Hunger and thirst seem to have a special place in the pantheon of human suffering. It seems so basic for life – which it is – but as palliative care providers everywhere, every day attempt to gently explain, it is not necessary for death.
For many, at the end of a cherished life and in the midst of terrible suffering, the questions are not whether VSED is ethical or unethical, whether it is suicide or life-affirming, or whether is it a good death or a bad death. The question is far starker than any of these: Is it the least bad death? The answer for some to this last question increasingly is to shut their mouth to end their life. The answer for some is VSED which for them is the least bad death.