I say yes.
I have sold over 3 million copies of my book Hard Choices for Loving People: CPR, Artificial Feeding, Comfort Care, and the Patient with a Life-Threatening Disease. Only once, in the 25 years since the First Edition came out, I received a complaint from a reader who took issue with my claim that Alzheimer’s Disease is a terminal disease.
They told me, “You don’t die from Alzheimer’s. You die from something else like pneumonia, or a stroke, or cancer.”
But I say, in most cases, the advanced dementia leads to what finally takes the patient. For example, pneumonia is a very common cause of death for these people. The end stage of Alzheimer’s is marked by increased eating difficulties and increased frequency of fevers. Getting food or fluid in the lungs can lead to pneumonia that can lead to death. 50% of advanced dementia patients who are hospitalized for pneumonia or a fractured hip are dead within six months.
There is even a recognizable “end stage” of this disease. Persons in the last phase of Alzheimer’s qualify for hospice benefits under Medicare. Families and physicians often modify the goals of medicine for advanced dementia patients. It is not unusual for a family to decline the use of antibiotics to treat pneumonia. This is an accepted standard of care.
In my view it is helpful for people to think in terms of this condition being considered terminal. You think in terms of how to best keep the patient comfortable rather than curing everything that comes along. It encourages everyone to do the emotional and spiritual work to prepare for dying.
I just got off the phone with the widow of an old friend of mine. She called to let me know her husband died last week. I hadn’t heard. He was 70. Alzheimer’s.
I last saw him in October on my way to a speaking engagement near Orlando. This was the week before he entered a memory care unit. I’m not sure he knew me. He told stories and laughed like he always did but his words made no sense.
We had grown up in the same neighborhood and I followed him three years behind to the University of Florida. He played baseball, me football. He went into law, me the ministry. Over the years I would stop by and we would go fishing. He loved to fish the lakes.
His wife told me he died from aspiration pneumonia. A very typical way for advanced dementia patients to go. They get food or fluid in their lungs and an infection follows. Often these patients are treated with antibiotics and the pneumonia is cleared up. Then the decline of the patient continues and they get pneumonia again, etc., etc.
They refused antibiotics and called hospice. She told me he died the most peaceful death.
Around Christmas he had gone into the hospital and “it was a horrible experience.” “We didn’t want to put him through that again.” They didn’t.
I told her she did the right thing. I said, “It is so routine to put the people in the hospital, pump antibiotics into them and they are saved only to get worse. I cannot say enough good things about how you handled this. It is so out of the norm but in my view the best of care.”