Ethics and Alzheimer's - Part Two: Feeding Tubes

Nancy Valko
September 5, 2016
Reproduced with Permission
Nancy Valko

In 1988 during the Nancy Cruzan case involving a young, non-terminally ill woman in a so-called "persistent vegetative state" whose parents wanted her feeding tube withdrawn so she would die, I was asked if I was going to feed my mother who had Alzheimer's disease. At the time, my mother had no problems with eating but I knew the real question was about a possible feeding tube later on.

Ironically, I had just written an op-ed on the Cruzan case titled "Feeding is not Extraordinary Care" and I pointed out that if the withdrawal of food and water from people with severe brain injuries was accepted, the pool of potential victims would expand.

I was thinking about people like my mother and, sadly, I was right.

In 1993, just 3 years after Nancy Cruzan died a long 12 days after her feeding tube was removed , a letter in the Journal of the American Medical Association by Dr. Ezekiel Emanuel, one of the future architects of Obamacare, acknowledged that the actual proof purported to show that the Cruzan case met Missouri law requiring "clear and convincing evidence" that Ms. Cruzan would not want to live in a so-called "vegetative" state rested only on "fairly vague and insubstantial comments to other people".

However, he noted that

"...increasingly it will be our collective determination as to what lives are worth living that will decide how incompetent patients are treated. We need to begin to articulate and justify these collective determinations ." (Emphasis added.) Source: The American Journal of Medicine January 1993 Volume 94 p. 115

Alzheimer's and Feeding Tubes

When I was asked about whether I would feed my mother with Alzheimer's, I gave the same answer I gave when my baby daughter Karen with Down Syndrome and a heart defect was critically ill in 1983: Their anticipated deaths must be from their conditions, not from deliberate starvation and dehydration.

In the end, neither one needed a feeding tube. My daughter's kidneys and other organs shut down and, since food or water would cause worse fluid overload, Karen was not given extra fluid and her heart gave out a short time later. In my mother's case, she eventually needed to be spoon-fed until she quietly died in her sleep.

As a former hospice and ICU nurse, these scenarios are very familiar to me. Multiple organ failure sometimes occurs with critical illness and dying patients often gradually lose their appetites as they approach death. In those cases, we would give what little these people want or need until death. But for people not dying or near death, we made sure that they had at least basic medical care and the life essentials of food, clothing and shelter. This is-or used to be-simple common sense.

Alzheimer's as a Fate jWorse Than Death

The easiest way to get people to accept death by starvation/dehydration is to get them to choose it for themselves even before they have a problem.

Thus, media stories of people and their families suffering tremendously because of Alzheimer's are very persuasive. People fear becoming an economic and emotional burden on their families. Not surprisingly, many people then willingly check off feeding tubes and other medical treatments in their advance directives.

Position papers like that from the American Geriatrics Society and the Alzheimer's Association can also paint a dark picture:

The Association asserts that research evidence support no medical benefit from feeding tubes in advance dementia and that feeding tubes may actually cause harm in the advanced state of Alzheimer's. Additionally, it is ethically permissible to withhold nutrition and hydration artificially administer by vein or gastric tube when the individual with Alzheimer's or dementia is in the end stages of the disease and is no longer able to receive food and water by mouth

The presumption is that such a death is peaceful and painless when a person is assumed to be unaware in a "vegetative" or late Alzheimer's state. However, Bobby Schindler has written an account of the reality of a prolonged starvation/dehydration death on his sister Terri Schiavo that was hidden from the public.

"Joe's" Case

Several years ago, I cared for a man with early stage Alzheimer's who had a serious pneumonia needing a ventilator for a couple of days. Afterwards, Joe (not his real name) was alert and cooperative but the ventilator tube unexpectedly affected his ability to swallow and speak easily. His family asked about a feeding tube and special swallow therapists to try to retrain his throat muscles so that he could eat and drink safely. That is how an even older friend of mine in the same situation but without Alzheimer's was successfully treated recently.

However in Joe's case, a neurologist was first called to evaluate Joe's mental status. I was there as the doctor asked him questions like "How many fingers am I holding up?" The man answered the questions correctly but the neurologist immediately wrote for nothing by mouth including crucial blood pressure medications. He also then recommended no feeding tube to the family. No swallow therapy was ordered. Joe was never asked about this.

When I questioned the neurologist and pointed out that the man had given correct answers by nods and holding up the correct number of fingers when asked, the neurologist responded by saying that the man did not hold up his fingers "fast enough"!

This is the tragic reality when we judge some lives as not worth living.

Up Close and Personal

One of my oldest friends, "Dr. Mary" (not her real name), is a pro-life doctor who asked me years ago to be her power of attorney for health care if she became incapacitated. She had never married and had no close relatives. She told me what she wanted, especially in light of the Nancy Cruzan case, and signed an advance directive available through our archdiocese.

My friend now has presumed Alzheimer's dementia and she is now in the later stages. She can still feed herself, albeit somewhat messily. She no longer remembers my name or her friends' names but she is delighted when we come.

At almost 90 and with inevitable death approaching, she now has a Do Not Resuscitate (DNR) order but her nursing home is well aware that this does not mean any reduction in care or attention.

Along with her other friends who visit and help, our goal now is to make Dr. Mary as happy and safe as possible. If she needs spoon-feeding, she will get it. All of us hope that Dr. Mary will never need a feeding tube but she will not be denied one if necessary.

But best of all, Dr. Mary will continue to receive our love until her Lord calls her home.