My instructions to the nurse were clear: “I don’t want any spitters or chokers!”
Hand feeding on the memory care unit
It was lunchtime on the memory care unit of the nursing home where I was chaplain. I was always looking for ways to minister to these poor souls who were losing their minds. What might work for more oriented patients, like a Bible study, was no good here.
Over my years there, I learned to feed the dementia residents who couldn’t or wouldn’t feed themselves. After all, Jesus did say, “I was hungry, and you gave me food; I was thirsty, and you gave me something to drink.” Although I did prefer patients who were not prone to choke or spit their food at me.
Voluntarily Stopping Eating and Drinking
The beginning of Hank’s “Dementia” addendum to his Advance Directive.
I previously wrote about hastening death by voluntarily stopping eating and drinking (VSED), titled She Fasted to Hasten Death. It was the story of a patient with decisional capacity who chose to end her life sooner rather than live with what she felt were too great of burdens.
But what of advanced dementia patients, who all need help with feeding and can no longer “choose” to hasten their death? I wrote another blog, VSED by Advance Directive — an Alternative to Prolonged Dying, about how to write an advanced directive (AD) indicating to your caregivers to stop hand feeding when you get to the last stages of the disease. I personally have such an advance directive.
Problems with VSED by Advance Directive
It sounds so simple: I want a peaceful death not dragged out over multiple years. So, I wrote instructions to stop hand feeding if I decline to the last stages of dementia. But there could be problems following my instructions:
- State regulations require addressing weight loss. If I am in a facility and am losing weight because hand feeding has been stopped, the administration might worry state regulators would not look too kindly at that.
- Caregivers might refuse to carry out my wishes. My family or professional caregivers might feel uneasy withholding feeding when I still open my mouth to eat and drink.
- Honoring wishes. I wrote the advance directive when I was healthy and of sound mind. I know when I get to end-stage dementia, I will not remember my desire to hasten my death. So, demented Hank is still willing to eat and drink. Who do you honor? Competent previous Hank or demented current Hank?
Minimal Comfort Feeding
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A recent article in the Journal of Pain and Symptom Management reports on “minimal comfort feeding” as an alternative to VSED by AD. Titled “‘Mr. Smith Has No Mealtimes’: Minimal Comfort Feeding for Patients with Advanced Dementia,” The article is available for free.
The authors identified three possible approaches to advanced dementia regarding feeding:
- Comfort Feeding Only. Attempt to feed the patient on a regular basis but give no more food and liquid than is comfortable. Advanced dementia patients can live for years with this approach.
- Minimal Comfort Feeding (MCF). Provide the patient only as much food and liquid as necessary to avoid discomfort. With this approach a patient might live just weeks to a few months.
- Stopping Eating and Drinking by Advance Directive. No food or liquid at all. The patient will live just days.
The second option would be especially appropriate for the “patient with advanced dementia who previously expressed a wish to avoid living with advanced dementia.” MCF also addresses the problems with VSED by AD I listed above. The case study patient in the journal article did not put his expressed desire to avoid prolonged hand feeding in an advanced dementia condition in an advance directive.
Withholding ALL food and fluid does have uncomfortable symptoms like a sense of thirst and hunger. MCF addresses these symptoms by only giving enough food and fluid to avoid discomfort but not so much to sustain life for what could be years with comfort feeding.
There are morally acceptable ways to avoid prolonged dying, perhaps for years, by pursuing “voluntarily stopping eating and drinking by advance directive” or by “minimal comfort feeding.”
I feel good about the prospects for my last days should it come by dementia.
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Author Chaplain Hank Dunn, MDiv, has sold over 4 million copies of his books Hard Choices for Loving People and Light in the Shadows (also available on Amazon).
Nothing to Fear: Demystifying Death to Live More by Julie McFadden, RN, is the latest in a long line of books showing the way to a more peaceful and more meaningful dying experience. Why another death and dying book? Why not? Sitting at #8 on the New York Times “Advice” best-seller list, Nothing to Fear is full of advice about navigating the last six months of life under hospice care.
Throughout Nothing to Fear we see nurse Julie addressing spiritual concerns of her patients and their families. She devotes a whole chapter, “Deathbed Phenomena,” to stories about patients having visions of long dead relatives. Here’s her understanding of these experiences returning to her theme of the metaphor of birth:
As the men gather each week, we hand everyone a name badge. Instead of “Hello, My Name is Hank,” each one says simply, “God’s Child.” We all wear one. Incarcerated and free.
When I first walked into the home, I sat alone with the wife in the living room. She was very comfortable talking about her husband’s impending death. I asked her, “What is all this about not wearing our pins or talking about death? Does your husband know he is dying?” She said, “Oh, yes, he knows he is dying.” I asked, “How do you know he knows?” She responded, “Because he asked me.” I asked how she responded to him and she had told him, “Not while I’m around.”
I read a recent JAMA Online article titled “
Changing “What does the patient WANT?” to “What does the patient THINK…”
Soon after I became a part-time nursing home chaplain in 1983, our administration formed an ethics committee. Virginia had just passed a “Natural Death Act,” which gave patients a right in the code to refuse treatment and provided a form (e.g., “living will”) to express their treatment preferences.
I have no control over whether anyone cares about what makes me tick. I cast these words out into the sea of my legacy, perhaps to drift on as flotsam. It’s what I can do in these last years of my life. Well, hopefully years.
I was such a scaredy-cat at 8 years old. All I can remember of two particular movies in 1956 was that I kept my eyes closed during the entirety of each film. I have just discovered, through Wikipedia, that 
I just placed the latest “deep field” photo from the new James Webb Space Telescope to my home screen on my iPhone. This is a time exposure photo of a portion of the night sky the size of a grain of sand held at arms-length. Thousands of galaxies appear as we look back billions of years. Each galaxy has billions of stars — each star is not unlike our sun.
How many times have we seen in an obituary, “He died peacefully at home with his family gathered around him.” Families wear this as a badge of honor. They provided the best of care and met the patient’s wishes to remain at home.
