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).
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Photo by David Ballew on Unsplash
