Last year, I wrote here warning about a bioethics paper that advocated restricting the amount of orally received food and water given to dementia patients, an intentional undernourishment approach that the authors labeled “minimal comfort feeding.”
Well, the idea of death by intentional undernourishment has now hit the big time in the popular media with a long New York Times piece telling the story of a dementia patient who died under that regimen. I expect it to spark a national conversation. (I make a brief appearance in the piece. The reporter, Kate Raphael, could not have been more cordial and presented my views accurately. Also, she offers plenty of objections from medical professionals, so this response should not be deemed a criticism of her work.)
The title of the piece asks: “She Didn’t Want to Live with Advanced Dementia. So Why Was She Being Kept Alive?” It quotes the daughter of the dementia sufferer:
“We were never interested in prolonging her life just for the sake of prolonging her life,” Ms. Hendrickson remembered telling the doctor. “We wanted her to just be happy and comfortable.”
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The doctor, who was not employed by the memory care unit, had a suggestion. She had recently read a paper that put forward a new approach, called “minimal comfort feeding,” in which providers stop scheduled feedings and instead offer dementia patients just enough food and liquid to ensure comfort, and only when the patient shows signs of hunger or thirst. The idea was that someone with advanced dementia with no interest in food, or limited interest, might be allowed to die once they begin to refuse enough hydration and calories to sustain them.
We must be very clear here. The issue is not about patients who refuse hydration and calories or who have no interest in food, but of not providing as much sustenance as they may want: intentionally undernourishment. Indeed, the original bioethics paper offers this definition:
Minimal Comfort Feeding: Only as much food and liquid as necessary to avoid discomfort . . .
MCF is the provision of only enough oral nutrition and hydration to ensure comfort (Table 1). With MCF, eating and drinking is not scheduled; rather, caretakers offer food and liquids only in response to signs of hunger and thirst. Patients are neither wakened for regular mealtimes nor encouraged to eat or drink. Instead, they are offered frequent, fastidious mouth care, continued social contact, therapeutic touch, sensory distraction, and medications to relieve distress associated with apparent thirst or hunger before being provided with minimal amounts of liquid or food.
In other words, if the patient shows signs of hunger, kill the urge by medication (sedation?). If the patient still wants to eat, sufficient food and drink to sustain them will be withheld.
The ultimate point isn’t comfort but hastening death. Where a dementia patient might live years if properly nourished with scheduled meals, under MCF, the “time to death” is “weeks to months.” The original paper even suggests that surrogates be allowed to decide to slow-motion starve patients in the absence of a signed directive so requesting:
Therefore, oral nutrition and hydration sufficient to sustain life may be declined by the individual for themselves in the future via advance directive or, in the absence of an advance directive, via a surrogate exercising substituted judgement.
The issues presented by this question are easily conflated and confused, but distinctions are important in ethical deliberation. The following actions and omissions are not what we are talking about by supporting full nutritional support for dementia patients who willingly eat or ask for food:
- Forced feeding: This should never be done to a dying patient. When patients are dying — whether of cancer, dementia, or another malady — refusing sustenance is often a natural part of the dying process.
- Feeding tubes: This is a medical treatment that involves surgery and a medically constituted formula. As a medical treatment, it can be refused in an advance directive. In contrast, spoon feeding when a patient willingly eats is a form of humane care of the same category as keeping patients warm, clean, and turning to avoid bed sores. Traditionally, humane care cannot be withheld.
- Forced medical treatment: This entails keeping patients alive for as long as possible regardless of their desires. Dementia patients may already have DNRs placed on their charts, refuse antibiotics, kidney dialysis, chemotherapy, respirators, and other life-sustaining medical interventions.
There are other issues to consider. What would the impact on caregivers be if they could be legally required to refuse nourishment that a patient wants? I think it would drive many caring nurses and aides out of the industry.
What about the chances for abuse by greedy relatives who would benefit from an earlier death or by assisted-care facilities receiving capitated government payments? And think about the temptations to discard the vulnerable in a society — while calling it empathy — that seeks to save medical resources. And how would defining dementia patients as killable affect their perceived inherent equality? The list could go on and on.
These are not abstract questions. I have up-close and personal experience with the dilemmas associated with terminal dementia, as my mother died from the affliction. Mom was receiving hospice support at my home. At one point, she refused all food and I thought it was the end — until Helen, her saintly Visiting Angel, brought her some canned peaches. My mother took one look, quickly scarfed them down and asked for more!
She soon began eating other meals too, particularly enjoying bowls of cereal. “This is delicious!” she repeatedly exclaimed. In other words, the joy of eating what she wanted, and as much as she wanted, brought her greater comfort than would have medicating her to deprive her of proper sustenance.
“Minimal comfort feeding” is just a euphemism for slow-motion euthanasia. If allowed, it would eventually lead to cases where advanced-stage dementia patients are getting lethally jabbed — all in the name of even greater “compassion” and “comfort,” of course. Do we really want to go down that path?
LifeNews.com Note: Wesley J. Smith, J.D., is a special consultant to the Center for Bioethics and Culture and a bioethics attorney who blogs at Human Exeptionalism.
