How to treat the terminally unconscious

How should we treat a person who is terminally ill and terminally unconscious? For people who believe in an afterlife, considerable attention makes sense, since some sort of essence of the person remains until the time of death before moving on in some fashion. Even for some who don't believe in an afterlife, special attention makes sense as part of customs or traditions.

What about those who don't believe in an afterlife and have no reason within their family customs to give special attention to an unconscious dying person? What do they owe ethically or morally to the unconscious dying person as a person? Beyond basic physical comfort, I suggest the answer is: nothing.

I think large parts of our society do not accept this as a valid position. This was driven home to me when my mother died in November. She was in the hospital on what everyone knew would be her last day. She was profoundly unconscious, not responding to music, voices, or touch. When she was conscious in the few days before that, she had given no sign of recognizing individual family members. She had had a progressive and serious dementia for the past two years.

My father had decided that he did not want to be there on her last day, based on his understanding of the situation. If he thought she would recognize him and he could be of some comfort to her, no one could have kept him away. But he was certain this was not true, so he did not want to go.

In the nursing facility where he lives, a nurse essentially bullied him until he agreed to go to the hospital. Perhaps "bullying" is a strong word, but it had that effect on a man who was frail, grieving, and under the best of circumstances shies away from conflict. She told him that my mother could hear him even if she couldn't respond and that he would regret it later if he didn't go. She would not accept repeated "No thanks" or "I'll think about it". Hopefully most people will agree that she went too far, but I think far too many people believe that she was right. He went to my mother's bedside for an hour or two, but found it an upsetting experience without any benefit.

My father has since expressed dismay that family members were summoned to her bedside at a time when she was terminally unconscious. He feels it was gruesome and disrespectful. I don't share his feeling that it was gruesome or disrespectful to her, though if I had known I would have tried to respect his wishes. I do share his feeling that there was no benefit to her from anyone being there -- for all intents and purposes there was no "her" to benefit from anything any more. He had not been present when his own mother died, and when asked if he regretted that, his answer was an unhesitating "No".

My mother never wavered from atheism in her long life. Her will stated her body was to be cremated in the least expensive manner possible. My father has been an atheist since he was in college and has been quite sure there is no afterlife. There is no doubt in my mind that my father loved my mother as much as one person can love another. It is just his view that when her mind was fully gone, she was gone.

Why is this not acceptable? I can think of various reasons why those who believe in an afterlife would have difficulty with this view. As an aside, the staff took some time alone with my mother to tend to her physical needs just a couple hours before she died, and when they were done the small TV on its swinging arm was against the wall, at a discrete distance and a discrete volume, tuned to a Catholic mass. I personally didn't mind.

There are many people at FUSN who like me might say they believe in something unknown to science, or in a connected web of all existence, or some similar sense of spirit. But I think relatively few would say they believe in an afterlife where a person's personality and memories are preserved. I think that at a moment of contemplating a loved one's death it is understandable to waver from that conviction, and to be open to the possibility of something profound and spiritual going on in a literal sense. Some might consciously or not find themselves acting on a variant of Pascal's wager: if I behave as if this person has a soul and is present to the end, there is nothing lost in any event but much to be gained on the off chance there is.

What I ask is for respect for those of us who feel confident that nothing spiritually momentous is happening at the end of life for a person who is unconscious. That respect should include not assuming we are unloving or cowardly or in denial.