Aid-In-Dying Loophole: Advocates Want You To Know You Can Stop Eating And Drinking

Lee J. Haywood/flickr

Lee J. Haywood/flickr

By Nell Lake
Guest contributor

One sunny day in the spring of 2012, Kathleen Klein sat in a car by the California coastline with her 84-year-old mother, Jackie Wilton. The two women had been quietly gazing at the view, watching seagulls along the shore. “I’m ready to go,” Klein recalls her mother saying. “Not go home…Go.”

Klein didn’t need the clarification. Her mother had been speaking of wanting to die for years, ever since Wilton was diagnosed with an unspecified dementia a few years before. Wilton’s memory had become significantly impaired. But even before her diagnosis, Wilton was clear: She wanted to die before she became severely incapacitated.

Not long after the conversation by the water, Wilton asked Klein explicitly for help in ending her life. In interviews and a recent blog post, Klein remembers wanting to help her mother, but of being unwilling act illegally.

Even if Wilton had lived in one of the five states with an aid-in-dying law, she would not have qualified for such aid from a physician. That would have required a doctor’s determining that she would likely die within six months. Given the usual course of chronic, progressive dementia, Wilton would likely have lived much longer.

So Wilton needed another option for ending her life. Soon Klein heard a radio interview about “the possibility of helping someone die by letting them stop eating and drinking,” she wrote. “The way I understood it, it was the only legal form of assisted suicide.”

Klein mentioned the scenario to her mother. Wilton said she would think about it. A few days later, Wilton again mentioned wanting to die. “I asked her if she remembered the idea I had run by her. She didn’t, so I told her again. I suggested we give it a try (a ‘dry run,’ we called it) for a day and see if she wanted to continue.”

Wilton began the “dry run” on April 28, 2012.

No Food, No Drink

Most often referred to as VSED — voluntary stopping of eating and drinking — the practice of giving up food and drink in order to hasten one’s death is being increasingly publicized by aid-in-dying advocates as a legal alternative to physician-assisted suicide.

VSED is legal everywhere, even in states without aid-in-dying laws, and in cases in which a person, like Wilton, would not qualify for assistance with dying even in those states.  Compassion and Choices, a leading “death with dignity” organization, is beginning to more actively promote VSED as an option because “it’s something that patients can openly pursue, in open dialogue with their physicians, with the support of hospice,” says Barbara Coombs Lee, the group’s director. “We do want to make it more public. We want to make it more visible because it upholds the truth that ultimately patients should be and are in charge. That’s kind of a consciousness-raising task.

Coombs Lee likens VSED to a patient’s decision to end a medical intervention such as kidney dialysis. A person with kidney failure may decide that she does not want to be kept alive by dialysis any longer. This patient may decide to discontinue dialysis treatments, in which case she would die of kidney failure. Similarly, Coombs Lee says, a very old or frail person could decide he doesn’t want food and drink to keep him alive any longer. By foregoing food and liquids, this patient would die of organ failure from dehydration.

A Moral Thicket

Obviously there are ethical questions at play here.

Dr. Daniel Sulmasy, a professor of medicine and ethics at the University of Chicago, disagrees that VSED is equivalent to stopping dialysis. Sulmasy does support patients’ foregoing medical treatments in cases in which they no longer want such interventions to keep them alive. Ceasing life-saving interventions allows a disease to take its natural course, Sulmasy says. He also believes doctors should be more open to allowing patients to stop such treatments, with the support of palliative and hospice care.

But Sulmasy says that VSED is different — not morally the same as stopping medical interventions. Society needs, he believes, to “maintain the distinction between killing and allowing to die.” By allowing to die, he says, “we are desisting in an intervention that interferes with the natural history of a disease. [But] the person who has voluntarily stopped eating and drinking–they can [still] eat and drink. There’s no underlying physiological reason that the person can’t.”

VSED therefore amounts to suicide, Sulmasy believes, and to him that makes it unethical. “I don’t think that it can be morally distinguished from suicide if it’s done in a purely rational way. It’s a lethal, pathological state of wanting to make oneself dead.” Were VSED to become widely and publicly practiced, Sulmasy believes, it would shift our collective view of who deserves to live, eat, drink, receive treatments — it could degrade our view of human worth and medical care.

“Once this option is on the table publicly, the default switch changes. The question becomes: ‘Why haven’t you killed yourself yet?’”

In terms of practice, VSED is not new. There’s plenty of anecdotal evidence that ill people sometimes deliberately stop eating and drinking in order to hasten their deaths. In her book, “A Bittersweet Season,” Jane Gross writes of her mother’s dying through VSED. In 2011 an elderly couple, Armond and Dorothy Rudolph received much media attention after their assisted living facility evicted them for trying to end their lives by stopping eating and drinking.

What is new is the effort by right-to-die advocates to make VSED a widely accepted, publicly acknowledged option in end-of-life decision-making.

While the ethics of VSED may be debatable, its legality is well-established.

Suicide is generally not a crime in the U.S., and a mentally competent person has the right to refuse nutrition and hydration. VSED also qualifies a person for hospice support under Medicare rules. While the rules say that patients can receive hospice care only after a doctor has found that they’ll likely die within six months, even people who don’t meet this requirement are eligible for hospice once they’ve stopped eating and drinking.

This is because of a sort of logical tautology: VSED can engender hospice care because once a person has shown a commitment to dying through VSED, she is expected to die soon. Therefore she qualifies for hospice.

Paging Hospice

Doctors and aid-in-dying advocates emphasize that hospice care — the pain relief and comfort that hospice provides — is essential during VSED. Dehydration causes organ failure, which can be painful. A natural process called ketosis during VSED, a result of an impaired metabolism, may help prevent pain and even cause euphoria. With sufficient pain relief, hospice doctors say, the most troublesome symptom of VSED is dry mouth, which can be relieved through mouth swabs and other oral care. Hospice workers may also sedate a patient if he or she requests this.

Few statistics are available on the practice’s prevalence. It’s difficult to track, in part, because death certificates tend to attribute death to underlying, terminal illnesses rather than to VSED.

A 2003 study in the New England Journal of Medicine sought to shed light on VSED by surveying 307 Oregon nurses who had worked with patients enrolled in hospice. The study found that a third of the nurses had experience in the previous four years with patients who died of VSED. This finding seemed to show that even in a state with an aid-in-dying law, VSED deaths were nearly twice as common as deaths from physicians’ prescribing lethal medication.The report gave a rough sense of the frequency of deaths from VSED among those already in hospice.

The study also asked the nurses to evaluate the quality of the VSED deaths. The nurses’ average score was 8 on a scale of 0 (a “very bad death”) to 10 (a “very good death”). Eighty-five percent of the patients described by the nurses died within 15 days of stopping food and drink.

In her blog post, Klein describes the days during which her mother gradually reduced the amount she ate and drank. Wilton became weaker and spent more time in bed. Eventually she stopped eating and drinking altogether. A hospice service stepped in and helped with pain relief. On day nine, Wilton “went to sleep for the last time,” Klein wrote. Her mother became unconscious. “We gave [my mother] morphine around the clock, according to hospice guidelines. We told her how much we loved her and that we would miss her terribly but we were letting her go.”

A ‘Good’ Death But ‘Surreal’

On the 13th day after beginning the “plan,” Wilton died.

Klein says feels good about the manner of her mother’s death. Klein is proud of the help that she gave. She does wish she’d received more support herself during the process. She has written publicly about her mother’s death, she says, in part to offer such support to others and to demonstrate that VSED is a workable option. “It was an experience I had never had before, and never could have imagined,” she says.

The experience of supporting her mother through VSED felt “surreal.” She says she repressed her own emotional reactions in order to go through with a difficult plan. Had she known others who’d followed the same process, had she received helpful advice, she believes she would have worried less. But “I didn’t know how to find anyone who had been in a similar situation,” she says.

Compassion and Choices hopes to change that. The organization offers resources on its website and a help line (800-247-7421) for those seeking more information about and support for voluntary stopping of eating and drinking.

Nell Lake, a journalist and magazine writer, wrote the new book, “The Caregivers: A Support Group’s Stories of Slow Loss, Courage And Love” in which she chronicles the lives of family caregivers over two years. She lives in Western Mass.

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  • Sunna Dottir

    It is called The Five Wishes, and is valid in over 40 states.
    It is available at http://www.agingwithdignity.org/five-wishes.php.

    Five Wishes lets your family and doctors know:

    Who you want to make health care decisions for you when you can’t make them.

    The kind of medical treatment you want or don’t want.

    How comfortable you want to be.

    How you want people to treat you.

    What you want your loved ones to know.

    That said, having sat with a loved one who had a DNR directive and the Five Wishes Document and a lawyer going to bat for him, it is tough.

    The Hospital / Hospice staff were awesome and the accommodations were better than most. It was an honor to have been a part of something so powerful and so intimate and so lovingly dignified.

    It was also the most difficult thing I have ever done.

    Letting someone go with love in my heart, while the tears ran freely down my face until I didn’t think I could shed another tear, and watching him heave breath after breath, while the minutes turn to hours and the hours turn to days was to me like labor in reverse.

    He finally passed after six days and seven nights in the dead of night with two lovely young men sleeping near by. And I cried some more.

    We have to honor our loved ones and fight for their right to die when and how they choose in a place that honors them and honors their journey. When it is our time, we would want someone to do the same for us.

  • Thaddeus Pope

    VSED is indeed legal. I reviewed both the relevant primary and secondary authorities in 2 recent articles.

    http://papers.ssrn.com/sol3/papers.cfm?abstract_id=1689049
    http://clinicalethics.com/ 25(1): 68-80 (2014)

  • James Leonard Park

    VDD—Voluntary Death by Dehydration is what I call this life-ending option.
    Here is a comprehensive Internet portal about VDD:
    http://www.tc.umn.edu/~parkx032/VDD-Q&A.html.
    If you know of additional resources, please suggest them.
    Also, because this is a Question-and-Answer format,
    are there additional Questions and Answers that should be included?

  • jade laby

    My Uncle Gabriel got a stunning blue Dodge
    Charger SRT8 from only workin part time on a home pc… hop over to here F­i­s­c­a­l­P­o­s­t­.­ℂ­o­m

  • Tyro

    I’m 26 years old, almost 27. I have a severely painful, progressive disease called Ehlers-Danlos Hypermobility. It won’t kill me, not directly, but I won’t last another five years unless medicine steps up and gives me adequate care. On a good day I’m sore like I have the flu. On a bad day like today, it feels like the aftermath of a car wreck.

    Inadequately managed chronic pain is horrible beyond most people’s ability to contemplate.

  • Kitty

    Death by starvation/dehydration can be horribly painful and takes quite a long time. It’d be much more humane to simply offer a lethal dose of morphine, for example, and let the patient die peacefully within about an hour.

  • nurseTTG

    Sulmasy seems to impose his views on others. The ethics and morality of suicide are by no means universally understood. And VSED, as mentioned, seems to be a comfortable way to die.

  • Anita Garrick

    My mother had made it very clear that she wanted no medical intervention. She had dementia and when she lost the ability to feed herself, she gradually stopped eating and drinking. We offered her food and drink and coaxed but didn’t force her when she refused. She was able to stay in her assisted living facility under hospice care and died with minimal meds to keep her as comfortable as possible. Dying, like giving birth, is painful and you can only mitigate it so much but if you stay away from trying to prolong biological life beyond what is productive through artificial means such as feeding tubes, you reduce the time the patient spends in agony. The hospice nurse explained that it is natural for a dying person’s body to refuse food. My faith teaches that you are morally obligated to force nutrition and hydration on a dying person even if there’s no chance of them regaining a decent life. My mother’s faith didn’t, for which I’m thankful.

  • Terry Cooper

    Someone very dear to me was terminally ill, and he was frantic when he found out he was terminal. His father had also died f cancer and in a great deal of excruciating pain. My friend did not want to have to experience that or even risk it. I stayed with him for the three weeks he lived after being deemed terminal, and once he felt as though he had some say so about how and when he died, and was not going to have to suffer unbearable pain, and indignity, he actually seemed to find peace of mind and acceptance of death. He did however, begin to refuse food, and for the last few days only took very small amounts of water, and only then at my insistence. He was also under hospice care, on morphine patches, and liquid morphine for any break-through pain. His last day, he was in an out of consciousness, mostly out, but only minutes before he passed he rallied for a few seconds before he began the last death rattle breathing that occurs. I was with him practically every minute of every day and night for those three weeks, and I appeared to me that he died peacefully. I am sure that with the help of hospice that he did not have to endure any pain. The informational packet that hospice provides once a person signs on for their assistance, plainly states that the use of Morphine can speed the dying process. I believe that to be because morphine as many other pain killers also kill the appetite, and change the senses or taste and smell. I know this from having had open heart surgery and being on morphine and later other drugs for pain, and I could not eat anything for 11 days. A person can actually go for quite awhile with no food, but only about four tops with no fluids.

  • Laura

    There is an important distinction to be made here between the body’s natural processes at end of life and VSED. The natural process of many illnesses is loss of appetite followed by loss of ability to swallow. It is the same reason why feeding tubes aren’t always recommended when an incurable disease is present. The body is shutting down and cannot process nutrition to the point that any food, especially artificial, would harm the person. A person may be refusing food simply because their body does not want it or cannot digest it. In hospice we aim to follow the patient’s wishes for comfort during the last stages of life. I’ve only had one patient to choose true VSED, and there were many discussions with that patient and family regarding the physical, spiritual and emotional factors that went into that decision. This was a choice this patient made and the hospice team was supportive of that choice throughout the journey. In many cases, refusing all food may add to discomfort and not significantly hasten death. Small bites of calorie-rich, easy-to-digest food like ice cream, may be more comforting than refusing food alltogether. It’s important to talk about why decisions are being made, to consider the emotional and spiritual roles of end-of-life decisions, and for the patient and family to be fully informed of all their options so they can make the choice that’s right for them according to those own personal goals.

  • Dawn Ostreicher

    My 88 year old grandmother, who had beaten cancer started having a lot of pain. She had the beginning stages of dementia and was just tired of the pain that she was living with. We went and saw her doctor, who said he could order tests to find the cause and see if the cancer was returning. My grandmother said no, she was done being poked and tested and taking medicines that were not helping. She explained that this was not living, it was managing and that she was not happy any more. The doctor referred us to hospice, stating the cancer may have returned and that she was refusing any further medical treatment. We kept my grandmother comfortable with pain medicine, and offered her food and water. Most days she didn’t want anything, other days she wanted crazy things like a banana milkshake or an ice cream sundae. Within 20 days of going on in home hospice, my grandmother passed away. She was a highly religious woman, who never would have taken her own live through suicide. She talked about taking pills and going to sleep, but was afraid of eternal damnation.

    I do not feel like taking the hospice route, and refusing food was my grandmother committing suicide. It was a humane way to take control of the remainder of her life. I feel like every state should allow the aid-in-dying law. Allow and respect people enough to allow them to make these important decisions for themselves. Allow our elderly and sick to make the choice not to be a burden, or to live with severe pain. Allow them to have a quality life vs quantity.

    • Laura

      This brought me to tears. Thank you for sharing your personal story.

    • jeanie12

      Dawn, My condolences to you for your grandmother. I also believe Hospice is so important and allows you to go most comfortably. It is the best alternative to euthanasia. My mom died from metastatic breast cancer to the bone which was very painful. They kept her very comfortable with pain control. Naturally her appetite and water consumption decreased. A few days before she slipped into a coma and eventually passed she did not need any more pain medication. That was of great comfort to me as she had suffered so.

  • James Leonard Park

    For anyone concerned about the wisdom of choosing death by dehydration, here are 26 safeguards, which will help the patient and the family examine the pros and cons of choosing this pathway towards death: http://www.tc.umn.edu/~parkx032/CY-VDD-SG.html

    • Madeline Graham, DVM

      I am a house call veterinarian and perform home euthanasia for beloved dogs and cats multiple times each week. The most common comment I get afterwards is how my client wished their human family member had been able to have as peaceful a passing as their dog or that they could have euthanasia as an option for themselves in the future. Why we make people who are suffering terminal disease, and who while of sound mind have been clear about their wishes, die of thirst, starvation or the natural disease process is beyond me. Even policies such as Oregon’s Death With Dignity require the dying person choose to die while they are still able to hold the pentobarbital cup themselves, forcing them to die before they are fully ready. Euthanasia is humane, loving and peaceful and should be a basic right for each of us to choose for ourselves. And Dr. Sulmasy’s use of the word killing is unfortunate – the disease or old age is killing the patient. We, as doctors, are offering euthanasia to prevent suffering from the final ravages of those conditions. It is a final gift which our loved ones and we ourselves deserve.

  • Ivy Tester

    As a hospice nurse for many years, this topic is discussed frequently with caregivers. Throughout the debilitating disease process, a person loses control over everything that happens to them. As their bodies decline, they go from independence to complete dependence on others for basic needs. The one thing that they have left to control is what goes in their mouth. That one last choice should be respected and held dear.
    From my experience, it is not the refusal of food or fluids that causes death. I have seen people survive weeks longer than I ever thought a human could, without nutrition. But the complete acceptance of someone’s choice not to eat or drink eases one of the stressors that caregivers face and allows them to focus on comfort, which is the most rewarding task in caring for someone they love.

  • T.M. Barclay

    My mother chose to die by ceasing to eat and drink. I knew what she was doing however, without a direct statement from medical personnel it really didn’t “kick in” that she was dying. Not sure that makes much sense….I suppose surreal is the proper way to describe the whole situation. My oldest sibling was the only one of us that lived near enough to be physically present at the hospital on a regular basis and she was mentally ill prepared to deal with the situation in a sensible manner. Instead of the doctor meeting with all of us and really explaining what was going on he chose to sit on the bed, give Mom a hug and say, “Rose is just tired.” Very improper way to handle this type of situation…though I wasn’t present save for short visits a couple times, I have a feeling that this is not the beautiful experience some are lead to believe…just as some view birth as a beautiful experience and others recall it as excruciating both mentally and physically. I can’t say I disagree with the manner but I will say the choice to die immediately versus this manner is much more appealing to me and seems much more humane.

    • a mouse

      If and when I ever find myself permanently disabled, stuck in a hospital bed, or otherwise terminally declining I’m quitting early. And if doctors won’t prescribe legal drugs, that’s fine, I’ll just use illegal ones!

  • Larry Constantine

    Years ago, my 86-year-old mother–after suffering one massive stroke too many, with only the words yes and no that she could still speak–said “No!” and refused all food and water. Through her answers to my questions, she made clear that she knew what she was doing and was ready to die. She had endured enough of fighting her way back through long rehab that never fully succeeded. I respected her decision and fought with my siblings and her doctors for her right to choose. Dr. Sulmasy may be sincere in his “ethics” stance, but he is wrong. And if he had been calling the shots in my mother’s case, he would have condemned her to years of paralysis, misery, and no quality of life.

    This right to die with some dignity when the time has come is fundamental and should not be denied. We are so preoccupied with extending life, stretching it out as far as we can, that we miss the fact that dying can be the right thing.

  • ronpies

    Thanks, Ms. Lake, for a thoughtful and nuanced discussion. VSED is not
    without controversy, but many medical ethicists now accept it as an
    ethically justifiable way of ending one’s life, without need of a
    physician’s lethal prescription. Indeed, voluntarily stopping food
    and drink has been a part of some spiritual traditions for centuries,
    as inevitable death approaches.

    Of course, physicians have an ethical responsibility to investigate the
    nature and circumstances of any such action on the part of a current
    patient–is the VSED being carried out in a rational frame of mind? Is the
    person clinically depressed, vs. reacting reasonably to an inevitable and
    irreversible disease process, such as the final stages of pancreatic cancer? etc.

    There are no easy answers to the question of how anyone deals with the
    end of life, but VSED differs from most suicides in some important ways.
    I discuss some of these issues in my Medscape article, available at:

    http://www.medscape.com/viewarticle/819565

    Ronald Pies MD

    Also see:

    Hecht JM. Stay: A History of Suicide and the Philosophies Against It.
    New Haven: Yale University Press; 2013.

    Schwartz J. Exploring the option of voluntarily stopping eating and
    drinking within the context of a suffering patient’s request for a
    hastened death. J Palliat Med. 2007;10:1288-1297

  • Sara Moyer

    My mother gradually stopped eating. She did want to die, she did have Alzheimer’s dementia. Whether her desire to die or her Alzheimer’s plaques caused her to stop eating, I do not know. After 3 months of gradually losing her appetite, she stopped altogether and 3 days later she stopped drinking. No one encouraged her to stop. She was gently encouraged to eat and drink until the day she stopped drinking. She was on sublingual morphine and mouth care. I sat by her side. I listened to her breathing, I sang to her and I hoped and prayed she was not in pain. She slipped into a coma after 2 days and died on the fourth day. She did want to die and she is in peace. Was it a good death? Is any death that takes 4 days a good death? My father and brother died in minutes-that is a good death. I would guess she did choose to die and our system of dying gave her no choices. She had only one. She asked a question a week before she died, “How old do you have to be to die?”

  • MargaretDore

    There is another side to the story: http://www.choiceillusion.org/p/vsed.html

    • Jess

      I feel sorry for her brother and sister.

    • grace78

      I read the story presented on the website you posted, and what I heard was the story of a traumatized daughter who was not ready to let go of her 94 year old mother. A feeding tube in a 94 year old stroke patient with dementia is oftentimes extraordinary measures. I’m so sorry that she was so traumatized by her mother’s passing and that she and her siblings were unable to agree on the course of care for their mother, but what that story says to me is that we all need to carefully spell out our advance directives well before any tragic and divisive events occur.

      • Gale

        Agreed!

      • MargaretDore

        The key to the story is that the woman herself was indicating that she wanted water, which should have been her choice. The “we know best” doctor and son instead chose for her.

        If she had instead been dying and no longer interested in food or water, that would have been different; that would have been her choice.

        I, personally, don’t want someone else deciding for me.

        That’s the point of the story.

        Margaret Dore
        http://www.margaretdore.com
        http://www.choiceillusion.org

        • grace78

          And so I hope you have a rock solid advance directive in place. That, is the moral of the story.