Death by voluntary cessation of fluids and nutrition needs discussion

Death by voluntary cessation of fluids and nutrition needs discussion

If you haven’t seen the movie, “Amour”, but are planning to, you might want to skip this commentary – but by all means do go!

It starts and ends with love, but not in Hollywood’s usual youthful romantic fashion.  It also starts and ends with death after much caring, love and suffering.  The agonizing toll on the patient and caregiver are equally dramatized in the stark manner of Michael Haneke the Austrian director.

The setting is mundane in the apartment of two aging French musicians.  The scenes are quiet, domestic, loving and free of a background music score.  As the wife suffers from a series of strokes, her mind and will to live erode. Was it reasonable that she tried to commit suicide?  Was it OK for her to make her husband promise never to take her back to the hospital?  Could the daughter have been more supportive?  What happens as the loving caregiver is finally at his wits end?

Some common measures hoping for improvement were tried:  rehab, second opinions, home health aids (one fired), a hospital bed, etc.  But both the loving husband and wife had to endure the agony of progressive physical decline – no doubt with accompanying situational depression.

The ending is stark and sad.  The husband could see no other way out.  How often is the act he committed actually carried out by the loving spouse?  We’ll never know.  .  “Amour” portrays this in what feels like real-time to the viewer.

I felt so sad in seeing death handled basically by two aging individuals on their own.  There was no home hospice care, no palliative care consultation, and no discussion of death by voluntary cessation of fluids and nutrition (VSED). Dying by VSED deserves more understanding and discussion. Quill and Byock have proposed clinical and ethical guidelines with the caveats to be aware of – coercion, abuse, lack of informed consent, depression, etc. Also, they point out the need for patients, families and providers to have continuing and clarifying discussions – all to allow wishes and dignity of the patient to be honored. “Amour” tackles these in a way that leaves us with lingering doubts and frustration. We have questions about the choices made, yet we’re left with undeniable admiration for the loving and dying couple.

A more common scenario happened to my father at the end. I remember him at age 94 basically slowing eating, beginning to losing weight and becoming partially delusional.  He then slowed fluid intake but would accept sips of fluids plus mouth care.  It seems to me that this was simply old age at its pinnacle with the body wearing out and dying – not really an example of VSED.  There would have been no benefit for providing fluids or tube feeding, a means of prolonging dying rather than prolonging life.  He died peacefully without the need for diapers or messy body care.  We played bridge in his room keeping him company in his peaceful coma.  I heard his last breath from the cot beside his bed.

VSED need not be the slippery slope toward euthanasia some might think, but with the care outlined by ethicists and palliative care experts like Quill and Byock, there is hope that many options will be available to us at the end.  After all, it is our life, our body, and we all have a time to die.

Jim deMaine is a pulmonary physician who blogs at End of Life – thoughts from an MD.

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  • Mika Z.

    “death by voluntary cessation of fluids and nutrition”

    As long as it’s VOLUNTARY.

    Almost half of the Brits killed by their blessed National Health System in this manner are never even TOLD they’re being killed, let alone got permission from.

    The State is just killing “useless eaters” willy-nilly, and using doctors to perform the killings for them.

    • In 44 per cent of cases when conscious patients were placed on the pathway, there was no record that the decision had been discussed with them.

    • For 22 per cent of patients on the pathway, there was no evidence that
    comfort and safety had been maintained while medication was administered.

    • One in three families of the dying never received a leaflet they should have been given to explain the process.

    Do you trust the government, any government, to have the power to kill you if you become inconvenient to them? I don’t.

    • James deMaine

      I agree that there is a great deal of controversy about the “Liverpool Care Pathway” in England. Apparently there are some serious reviews being undertaken. I don’t think anyone in the USA trusts the government to perform euthanasia when someone becomes “inconvenient to them.” In the two states in the USA that have voted in favor of physician assisted suicide for terminally ill patients, there are multiple safeguards and reporting systems in place. There have be no media scandals or reports of abuse to date.

  • buzzkillerjsmith

    We have been doing this since the 90s. Why the discussion now? Do we debate the multiplication table?

    • James deMaine

      Are you referring to the royal “We” or your “n of 1″? I found no evidence that VSED care is as universally accepted as you seem to imply. Hope you go to the film.

    • buzzkillerjsmith

      No, an n of a lot. Kaiser Permanente. Perhaps you’ve heard of it?

      • James deMaine

        I’m delighted that you can speak for Kaiser Permanente. Would you kindly share the VSED clinical pathway that KP has put in place?

        • buzzkillerjsmith

          I haven’t worked there since 1995. As I say, you’re almost 20 years behind the time. Clinical pathway. That says it all. Another doc boxed in.

  • Ginger

    My Mom had a care directive that ruled out a feeding tube and when she got to where she could not swallow she entered pallative care. It was difficult, but she had been quite firm about what her choices were to be before dementia overtook her. The pallative care staff was helpful, her discomforts were attended to without needle sticks, machines or distressing suction devices. In the end we felt at peace with her decision and what we had done to support her.

    • James deMaine

      Thanks to honoring your Mom’s wishes.

      • Suzi Q 38

        I couldn’t ask my mom.
        She was not coherent.
        I had the feeding tube put in to see what would happen.
        She didn’t have a terminal disease, though.
        After a couple of days on the tube, she woke up, mad that she had a tube at all.
        It saved her life. The doctor had told me that I couldn’t wait much longer.
        She ended up getting better, then transferring to a nursing home for physical therapy and rest. After a few weeks, she went home.
        That was about 4 years ago.

        • James deMaine

          It’s wonderful your Mom has done so well. The doctor’s duty is to treat and try to preserve life in the absence of a terminal diagnosis. You and your doctor did the right thing. We have to be careful about giving up too soon when a patient looks very sick.
          I had one elderly man with emphysema say to me, “Look Doc, no tubes, OK?”
          I said, “Well, how about if you had a pneumonia that could be easily treated but you might need to be on a ventilator for a week?”
          He replied, “Of course, I would want that!”
          The moral of the story to me is that we always have to have clarifying discussions about the medical interventions and the patient’s wishes. It’s sometimes a difficult choice between prolonging a functional life and prolonging a miserable death. We all have to advocate for the patient’s wishes.

          • Suzi Q 38

            Thanks doctor.
            Not all of my siblings agreed about the tube, but I know I made the right decision at the time.
            Thank goodness I had the POA.
            I harbor no negative feelings to my brother and sister that did not want the tube; they just did not understand how small and minimally invasive it was. I told them that eating was a basic need….I had to feed her, as she was not strong enough to feed herself.

  • NormRx

    Why is it OK to withhold fluids and nourishment to commit suicide, but if I choose to use a .45 bullet to the brain it is not OK?

    • James deMaine

      You make an interesting point. Both end in death so what’s the big deal.
      Those who voluntarily stop eating and drinking are at the end of their lives. Generally their families know and are supportive. The end is peaceful with good hospice and palliative care.
      We did have a friend end his life with a bullet to the head. This was a surprise. The grief, anger, and blame lingered. The house was splattered with blood and the wife refused to ever return there. But I did know a law student with an untreatable form of leukemia who walked into the forrest, left a loving suicide note, and shot himself.
      Hemmingway might agree with you that this is a “manly” way to end it all. But a “bullet to the brain” can become a sad legacy within a family.

      • NormRx

        It is a tragedy when a sixteen year commits suicide because of a breakup with their girl/boyfriend. However, if one is elderly or has a terminal illness and one chooses to end their life I believe it is their decision and their decision only. With that being said, one has to consider the survivors and blowing your brains out all over the house is not very considerate. I am not afraid of death, what I am afraid of is a lingering stay in a nursing home where I am bedridden and unable to control my bodily functions. I would probably not use a bullet to end my life, but only because I am a strong supporter of gun rights and this would just give the anti-gunners more ammunition in their gun control agenda. I wouldn’t consider hanging, wrist cutting or driving my car into a train, so that would leave drugs. I think one can mitigate the effect on family by talking to them and explaining how your are suffering and this is the best decisions for all. Withholding nourishment and fluids is barbaric, why let the person suffer for 4-5 days when a little extra sedative can end it all?

        • http://www.facebook.com/sndrake Stephen Drake

          I guess then that we should tell suicide prevention organizations to stop spending money on trying to reduce suicide in the elderly, since getting assistance is less messy and less emotionally trying for families. The money could be put to so many other things.

          • http://www.facebook.com/sndrake Stephen Drake

            Just to be clear – my previous reply to NormRx was meant to be sarcasm.

          • NormRx

            Don’t be surprised Stephen, we probably agree more than you think. My point is, it is my decision and my decision only, I don’t want the state involved because they do have an economic interest in a “non productive” live. By non productive I mean someone who is no longer paying taxes and receiving benefits from the government. This is what I would consider the governments definition, certainly not mine.

        • http://www.facebook.com/lori.c.lucas Lori C Lucas

          I have to disagree that withholding nourishment and fluids is barbaric. the kidneys stop working, which leads to reanal failure and encephalopathy…I ahve no personal experience of course but it is taught in pc literature as a pretty peaceful way to die. there is not a sense of starving…

          • NormRx

            Lori, you certainly may disagree with me. Your comment reminds me of the pro-abortion people saying the baby doesn’t feel pain when its limbs are torn off. When your time comes and you choose fluid and nourishment withholding, by all means do so. I on the other hand will not, why should I pay for hospice care when it is something I can do myself. If I had a pet that was terminal, would I withhold food and drink until they die? No, I would not. There have been numerous times in my life that I had to euthanize a pet. I always did it myself, I never took the pet to the vet. Of course I had the advantage of living in a rural area where it is possible. The first time I did it was when I was about 12 years old and my cat came home with two paws missing and one hanging by a thread, she obviously got caught in a sickle mower. I immediately loaded my .22 and took care of it. My parents were both working and I was alone, what else could I do?

          • James deMaine

            Lori, I agree that VSED is not barbaric (again Voluntary being the key word). On first take it may look like it would cause great suffering. However, in a patient with a terminal illness, they can have good palliative care, good mouth care, ice, sips, low dose morphine, etc. If tube feeding is utilized in a terminal patient, there is often aspiration pneumonia, a need for a catheter, and diaper care. The research has shown that aggressive fluid and nutrition can paradoxically increase suffering at the end.

      • http://www.facebook.com/sndrake Stephen Drake

        When you say “those who voluntarily stop eating and drinking are at the end of their lives,” it’s clear you didn’t understand wjpeace’s reference to Compassion & Choices – the group is actively promoting the “choice” of VSED for people who are *not* dying, but feel their “quality of life” is unacceptable. They’ve been successful in getting hospice to facilitate the practice, which is only “end of life” in that the lives of the individuals have ended. The same has occurred recently with quadriplegics (non vent users) recently – so, as far as I can see, there is already a slippery slope – and we’re on it. It’s not a natural process though, but the result of C & C’s political agenda and advocacy.

        • C.L.J. Murphy

          There are doctors of honor and principle who want more discussion of things like VSED out of true heartfelt compassion for their patients… and then there are radical activist groups who try to hijack such discussion and practices for what appear to be political means. It is a shame.

  • http://www.facebook.com/bill.peace.56 Bill Peace

    I am perplexed a film that the author has not seen was used to craft an essay in favor of VSED. I also take exception to the idea VSED will not lead to a slippery slope to Euthanasia. I would suggest VSED is a measure of last resort and agree with Byock it needs to be studied in detail. VSED is not the panacea Compassion and Choices campaigns it is.

    • James deMaine

      I’m sorry if I misled you. I did see the film – which inspired my commentary! I’m not a member of Compassion and Choices or the Hemlock society. However, I do give community presentations about making your wishes known – a program called “Your Life Your Choices.” The medical providers really do need to know and honor your wishes. Ethically if the patient’s wishes are adhered to, then we can avoid your fears about a “slippery slope” to euthanasia.

      • wjpeace

        Thank you for the clarification r.e. the film. I am skeptical medical providers will take the time required to clearly grasp what a person’s wishes are. With the emergence of hospitalists there is an utter lack of continuity in medical care. As for the slippery slope, the expansion of assisted suicide in countries like Belgium demonstrate once laws are passed legalizing assisted suicide such laws will be expanded upon.

        • http://www.facebook.com/lori.c.lucas Lori C Lucas

          there are people trained to have these discussions in the right way, a meaningful way that the patient and family understand. they are palliative care providers. unfortunately, many doctors think that we are twisting arms toward hospice, or that they can do it themselves (no special skills needed when talking about end of life!)…this is when things go wrong, and autonomy is not respected.
          L Lucas CRNP Palliative Medicine

          • http://www.facebook.com/bill.peace.56 Bill Peace

            Lori, Hospice care can be done exceptionally well. In fact I think people wait way too long to enter into hospice care. But, and this is a big but, the hospice care movement is being infiltrated by Compassion and Choice people. This is deeply troubling.

          • James deMaine

            You’re so right. In my generation, I was actually lectured (by the author of a major surgical text) never to give a cancer diagnosis to a patient, but to take the relatives aside instead! Fortunately the current generation of trainees is at least learning the fundamentals of how to approach end of life discussions and to respect the patient’s wishes. Even so, hospice referrals are often done far too late in the course of a terminal illness.

  • http://www.mightycasey.com/ MightyCasey

    I walked this path – the NPO one – with my father ten years ago. He’d set up a clear advance directive years before stating what was, and was not, on his OK list for end-of-life care. Based on that, when his Parkinson’s shut down his ability to swallow we activated hospice care, which helped him manage symptoms for a few months before the disease progressed again, and he died 10 days later.

    “Voluntary” is the key word here: the patient and his/her family need to have a conversation about this stuff early, and often. Make your wishes clear to your own care committee. For indigent patients with no caregivers or family, just pulling the plug cannot be the first response. However, I fear that is exactly what happens more than infrequently …

    • James deMaine

      I agree with your concerns and that “voluntary” is the key word. When an indigent person cannot speak for themselves and their wishes are not known, then a court appointed guardian is the best legal protection for them. Physicians are obligated to treat – until it’s clear that it would not be the patient’s wishes to continue. At times, a guardian can’t be immediately available so physicians simply have to do their best to save a life if possible.

  • 99bonk

    My eldest sister, who had metastatic bladder cancer, decided that when she could no longer get out of bed by herself, she had had enough. She stopped eating and drinking in hospice and died according to her own wishes.

    • James deMaine

      Thanks. Your sister’s autonomy was respected. Good for her and all you cared for her!

  • Molly_Rn

    How wonderful that you father had a peaceful death. Oh that we all should be so lucky.

  • jane

    Did not think my comment would make it to the list as it points out that it IS a “slippery slope,” allowing drs with “bias to kill at will. And it happened to our family.

  • katerinahurd

    I was surprised that although I don’t personally know you, you recommended the movie, ‘Amour.’ I got the exact opposite recommendation from friends. Another movie, ‘Jack and Jill,’ raised similar issues about dying. The discussion about dying has nothing to do with mental competence. It has to do with the fear of humans facing the end of their life with or without pain. Medical student are trained to perceive pain as a sign of life. Is it accurate to infer that their attitude demonstrates lack of compassion for the dying because they strongly believe that they are the only ones who can defy death of a human being. Don’t you think this is arrogant.

    • James deMaine

      Yes, doctors, particularly the old guard like me, were trained with what I call the MDeity Syndrome – a paternalistic doctor knows best attitude. Fortunately that is changing. Younger doctors and trainees are now taught about end of life management and, in general, have more compassion and acceptance that we all die. Palliative care and Hospice have taught us a lot.

  • christiandoc

    For Christian patients, voluntary cessation of fluids and nutrition for the purpose of bringing about or hastening death is suicide. It amounts to deciding when and how you will die, rather than leaving it to God. I hope that doctors will not mislead patients into believing that they are making an appropriate choice that in fact violates the tenets of their religion.

    Being that it is Lent, a prayer from the Catholic tradition comes to mind, part of The Way of the Cross by St. Alphonsus Liguori: “I accept in particular the death you have destined for me; with all the pains that may accompany it; I unite it to your death, I offer it to you. You have died for love of me; I will die for love of you…” This is not to suggest that we should not do everything possible to alleviate suffering. It simply means that, when all means of reducing pain have been exhausted, Christians rely on the grace of God. It is not His will that people take their own lives, regardless of circumstance. A Christian who contemplates doing so needs prayer and support to continue in his or her faith.

    • James deMaine

      I respect your opinion but I don’t think either of us can speak for God or for the entire Christian faith. Medically, forcing fluid and nutrition (with a feeding tube) on a dying patient has been shown by researchers to have a worse outcomes – more suffering and complications. This may sound counter intuitive to you. Likewise CPR in a terminal patient can cause pain and trauma. My take is that the Lord would want us to have a comfortable and peaceful experience when we are at the end. I know some believe that suffering at the end will help to keep us out of purgatory, but that doctrine seems to not take the Lord’s mercy into consideration.

    • C.S. Weaver

      Jesus died within a day or so after being tortured and hung on a cross. Many martyrs died similarly or even being burned at the stake or beheaded. Perhaps this is what St. Alphonsus had in mind with his prayer. I doubt seriously that he was thinking of the terminally ill being fed and hydrated via tubes as “the death (Y)ou have destined for me…” . I respectfully propose that you do not know whereof you speak when you liken VSED to people taking their own lives.

  • James deMaine

    Thanks for making me aware of Dr. Cohen’s work. I would hope that visiting nurses, hospice/palliative care givers, family physicians, etc. are aware that aging men as primary caregivers for their spouse are at particular risk for committing homicide/suicide.

    That said, my intent in writing this article was to generate a discussion of VSED. It appeared in Amour that the wife was making it clear that she wanted no more attempts at fluids or feeding. The depressed and worn out husband (and no excuses here) took the way he saw fit. From the other comments on this post, you can see there is a lot of concern about VSED, autonomy, and how to respect EOL wishes.

    • http://www.facebook.com/sndrake Stephen Drake

      And *my* problem is that the movie (and most people writing about it) are perpetrating what Dr. Cohen herself describes as a potentially dangerous myth. Your assumptions about doctors, etc. are – I believe – unfounded. Medical providers are notorioussly bad at detecting signs of abuse, excess stress or depression – especially when individuals are doing their best to hide these issues. Most of these horrible incidents have nothing to do with mercy – and they are very specific to *men*. Men do most of the killing and yet women – who live longer in general – are more often the caregivers for a spouse.

    • Suzi Q 38

      Witholding fluids or food?

      Isn’t that a harsh way to go?

      I think taking sleeping pills or an overdose of Morphine or Duiladid would be preferable.

  • James deMaine

    I received this comment from a cancer survivor and health care worker. I found this a poignant description of the physical, social, emotional, and cultural challenges of care-giving:

    “The Cancer Blog has left a new comment on your post “Death by Cessation of Fluids and Nutrition”:

    “I am a survivor and health care personnel and this is a daily dilemma.
    My parents live by turns with me or my sister. Dad is immobile after
    his stroke. When he was really bad with barely any pulse, setting in
    cyanosis, a distressing ecg, he barely ate and drank.I told mom its ok
    just to keep him hydrated with a litre of water and let go if he refused
    eating. But dad like Lazarus rising from his grave, got up one morning
    and demanded food. Its 8 months since and he is eating 4 solid meals,
    4times liquids and is very demanding 24X7. Mom is 83 and he is 90. His
    speech is slurred and his memory shuffles between Shakespeare and
    Sanskrit, Geology and genealogy. He has sores we manage very well with
    just honey and clarified butter; he has constipation we manage with
    cremafin and occasional digital extraction, he has no aches and pain and
    is doing contradictory to our expectations even when symptoms show up
    and has mini strokes . Believe it or not its is laughter and tears for
    mom and me,and a smiling depression. Mom is exhausted, sometimes I
    wonder if Amour is blown out of proportion. While the love, life and
    companionship of 67 years of being married and together is no trivial
    achievement, the daily trials and tribulations of care-giving
    combines, love, duty, social and familial norms, guilt, anger and
    frustration. Food and water being a combination of survival instincts,
    connecting, keeping together, compensation etc- biology, psychology and
    socialogy- guidelines and implementing VSED have to be culturally
    sensitive. I for one want my dad to go peacefully so that mom can get
    some respite and i also know its going to be difficult for mom – whose
    whole world is centered around dad. She already has her own geriatric
    issues and depression, dad spurs her on and when he won’t be there
    she’ll breakdown. Where do we go from there? They feel they are are a
    burden on us and they say Chitragupta( the guy who stamps our death in
    scriptures)has forgotten them and Yama the Lord of Death does not come
    to them.
    We have now fixed portions for 2 main meals and 2 small
    meals,scheduled his potty days 2times a week, diaper him and have added
    an external udrain- condom catheter so that we dont restrict water,
    which we have brought down to 1litre + 750 ml in other fluids.

    We are playing it by the ear. The day he voluntarily stops or he
    clinically and progressively goes down, we will have to decide.
    ( Rama Sivaram, Breastcancer Advocate, Pune India.

    • James deMaine

      Thanks for sharing this. It seems that you are answering your rhetorical question, “where do we go from here.” You are “playing it by the ear. The day he voluntarily stops or he clinically and progressively goes down, we will have to decide”. Most of us do want to die at home or in a home-like environment, but it can put tremendous stresses on the spouse and other care-givers. Some have the physical, financial and emotional resources to step up to the 24/7 care you are providing. What a blessing that you have medical training. Juggling to provide what both your Mom and Dad want seems like a daily stress in that it my change as your Dad’s health status changes. I have nothing but admiration for your care.

  • Suzi Q 38

    Sad. You shouldn’t have to die because you are old and am in a wheelchair.