Friday, February 15, 2013

Death by Cessation of Fluids and Nutrition

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.


7 comments:

  1. As someone that is currently dealing with the end of life issues of both my mother and my father-in-law, I find it hard to watch movies about dying right now but will put it on my list. I am going to post a link to this at my blog as well. It is at http://www.endoflifeblog.org

    Thank you for all your postings! It has been a good read so far.

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    1. Thanks. Your blog with its story and advice is very powerful. We need to further build an internet network to support caregivers (and patients) as they tackle (or are tackled) by the issues of aging loved ones. I hope that we both can be of some help.

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  2. I haven't seen the film "Amour' yet but I've read about it and it's on my list. As a Catholic and an RN who works in LTC, I have been faced with a myriad of points of view about end of life care; families with loved ones closing in on death, patients ready to die, religious authorities who shout about "prolonging life by any and all means" and, then, my own observations and conclusions about what is the best way to prepare for inevitable death.
    My strong convictions prompted me to write a letter some years ago to the local Diocesan newpaper in response to an article by Catholic Bishops who proposed the necessity of preserving life at all costs and with all available measures. My rebuttal got printed, to my surprise, and what it said, in short, is that prolongation of dying is not charitable nor loving. What I proposed was to honor the advanced directives (have the conversation long before necessary), be sure the loved one is not "tested" to exhaustion in futile efforts to delay the inevitable, and be sure to surround that person with the people and environment they most love to secure a beautiful and graceful death experience for all.

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    1. Thanks so much for your sharing your proposal. I hope it found fertile ground. You might be interested that KevinMD has published this post and there are many comments about the EOL care and VSED. See: http://www.kevinmd.com/blog/2013/03/death-voluntary-cessation-fluids-nutrition-discussion.html

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  3. I am a survivor and health care personnel and this is a daily dilemmma. 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 geneology. 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 expecations 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 caregiving 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 progressivley goes down, we will have to decide.
    ( Rama Sivaram, Breastcancer Advocate, Pune India.

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    1. 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 may change as your Dad's health status changes. I have nothing but admiration for your care.

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  4. Jim,
    This review and your thoughtful observations and sharing of your family's experience with your father's death are moving. Even your written words reflect the "art of medicine" that you shared with clinical staff; patients; and family, both in the OP and Critical Care settings.

    The local; national, and international communities all continue to benefit from your teaching and leadership.

    Thank you!

    JMD

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