Like me, my wife finished her career in internal medicine as a hospice team physician.  Dealing with many loved ones of patients who were demented and no longer competent, we were struck by the frequency that decisions had to be made in a vacuum–people just seemed to avoid the topic of death and never got around to stating what they wanted in critical medical situations.  This stimulated us to have The Big Talk with our two adult children.  We had a frank discussion about mortality and the aggressiveness of medical care we would want in various medical scenarios, if we became unable to make our own decisions, i.e. demented.  Here is why such a conversation is important.

Dementia is a common reason for patients entering hospice care.  Cognitive and physical impairment in dementia ranges from forgetfulness to complete helplessness.  Patients qualify for hospice services at the end stages when speech and mobility are compromised and they require help in activities of daily living (ADL’s: dressing, feeding, bathing, toileting).  As I have told many families, unpredictability is the only predictable prognostic factor in dementia.  The journey to the end can be a matter of months, or years.  Patients often die quietly, although sedating drugs and/or pain medications are often necessary to ease the way.  Inanition is often a prominent issue, as patients, for obscure reasons, just stop eating.

If decisions on feeding are not the most common challenge for decision making families with demented loved ones, they are surely the most agonizing.  Raymond took the long track in his Alzheimer’s journey.  Diagnosed with the disease when he was 72, he was able to stay at home for about four years under the heroic care of his wife.  The couple had five grown children, one of whom devoted considerable time and energy to the care of her father.  When Raymond began to turn on the gas burners on the stove for no reason and to wander in the neighborhood unsupervised, the family made the difficult decision to put him in a nursing home, where the environment was secure with 24 hour monitoring.

He adjusted quite well to his institutionalized life—so well that, at times, the family wondered whether he might be able to return home.  This is not atypical for Alzheimer’s patients.  While the course of the disease over the long haul is inexorably downhill, there are peaks and valleys.  The good times, almost cruelly, fuel family’s hopes for recovery, which are dashed when the next inevitable downturn occurs.

At the age of 79, Raymond became bed bound, and he could then be cared for at home.  The family hired a 24 hour caregiver, and he was placed under hospice care.  He was helpless and non-communicative.  His face was impassive, and soon he seemed to recognize no one and to have no awareness of his environment.  His “activity” was confined to opening his mouth for food and swallowing it.  As this seemed more reflexive than volitional, his wife and daughter began to wonder about the wisdom of giving him the pureed diet he was ingesting.  Quality of life was the issue.

They asked me about stopping feeding, and I told them that such a decision was defensible and humane, assuring them that withdrawal of nutritional support would cause Raymond no discomfort.  The daughter was the power of attorney for healthcare and could therefore have legally made the decision unilaterally.  However, she was not about to make this mortal judgement without agreement among the siblings.  

The other four children lived out of town.  We were able to convene a meeting with all of them in attendance, with me present to answer questions and tell them what to expect with cessation of feeding.  There were a range of opinions regarding a course of action.  Some wondered whether cessation of feeding was tantamount to murder; others shared their sister’s and mother’s belief about the uselessness of continued feeding.  But all wondered what Dad would have wanted.  None of the children could recall ever having a conversation with their father about end of life issues.

Such intrafamilial divergence of opinion is common in these difficult circumstances.  “On the fence” out-of-towners, who have not personally witnessed the sorry state of their loved one for some time, often turn to advocating cessation of life support once they personally witness the pathetic condition of the patient.  In my experience, families generally come to a consensus, especially if the patient had explicitly made his or her wishes known in end of life situations.  In Raymond’s case, all finally agreed that their father would not have chosen to “live” as he was.  The children and the wife ultimately decided  to stop feedings, and he died peacefully about two weeks later.

Living wills are useful, but lack nuance.  In talking with our boys, I said that, in the event of an acute illness such as a stroke from which recovery was possible, I would want an all out medical effort–at least until multiple doctors agreed that, even if I lived, I would have no meaningful life.  Mindful of the many patients I treated like Raymond, however, I also said I did not want an existence in which I was oblivious to my environment.  If I could do nothing but ingest, I would want to be kept comfortable and I would want all nutrition to be withheld until the inevitable.