Dying With Dignity

Last December, I wrote in this space on the joys of caring for my father in his declining years. In early October, Dad died.

I was able to spend a great deal of time with him during his final months and hours. That experience caused me to ponder whether his life and death were without dignity.

A recitation of what Dad experienced in his last months and hours would cause many people to conclude that he was living and died without dignity. During that time his loss of capabilities central to his self-esteem accelerated. In May, he lost the ability to drive his car. His children persuaded him to "retire" from driving and then removed his car so that he could not impulsively come out of retirement. He increasingly lost his bladder and bowel control.

Once, he had gone into the basement to take a shower. When he was downstairs longer than necessary for any shower, I went down to check on him. I found him standing buck naked next to the utility sink, feces scattered on the floor, humiliated about his condition and confused about what to do. Later, his children forced him to wear padded plastic underwear -- that is, adult diapers -- something he had successfully resisted for far too long. As his Parkinson's robbed him of his balance, he was no longer allowed to walk about without someone shadowing him, if possible to catch him if he fell or to help if he could not be caught. Eventually he was denied access to the basement, where he had showered for longer back than anyone could remember.

The indignities piled up during his last few days. He was moved from the bed he had shared for over sixty years with my mother and made to lie in a hospital bed, bed-ridden with the guards raised to keep him from attempting to get out. We feared that if he got up, he would fall and break a bone. Most likely, we need not have feared; he was too weak to arise without help. He stopped taking food and water. He lay quietly in bed, eyes closed, mouth agape. His daughters swabbed his mouth to keep it moist, and also to remove the globs of mucous that formed on his tongue. His breath emitted the rankest odor I have ever smelled.

Dad's sons and daughters gathered around him affirmed to each other that none of us wanted to go as Dad went.

Other elements of Dad's passing, though, support the conclusion that he maintained dignity until his death. Throughout his long decline, he was able to stay in his own home. During his last days, the television in his room was tuned to the cable channels that broadcast the country and big band swing music he always loved. A few times he moved his right foot in time with the music's rhythm. Once, he opened his eyes and watched extended minutes of one of his favorite Pink Panther movies. Although he was unable to talk, he was able to communicate. He was able to nod or shake his head enough to answer questions about whether he wanted ice chips placed in his mouth or his bed to be adjusted. A squeeze of his hand would earn a return squeeze from his still remarkably strong hand.

Most important to the dignity of Dad's death, he was always accompanied by family. Sometimes it was a single daughter or son, holding his hand, caressing his shoulder, stroking his head, sometimes saying things to him, mostly sharing silence. Other times, the room where he lay had several siblings chatting among each other, making jokes, making each other laugh. There was a lot of laughter during those hours. Dad may have been dying, but he was not alone and he knew he was loved.

Another perspective would hold that Dad never lost his dignity because it inhered in the fact of his life rather than the condition of it. Although he was a fading shadow of his once vigorous self, he continued to be a human person. And as such had an inherent dignity, as we are told by both the Western human rights tradition and by the very core of the Jewish and Christian religious traditions.

Some disagreement about Dad's dignity represents the clash of three different notions of the source of dignity. The first holds that dignity flows from individual capabilities, in particular those that uphold autonomy or are a source of self-worth. The second holds that dignity rests in membership in human communities. One has dignity if one is loved and treated with dignity. This notion strikes me as superior to the first, which rests on the illusory notion that we can ever be fully autonomous and is open to the sin of pride.

But it too is limited, for it would open the door to mistreatment of anyone who is a complete outcast from society. Hence the need for the third notion, which holds that all human life has dignity, even if we are unable or choose not to see it.