I attended the funeral last month for a woman my age. This, alone, has a way of bringing one’s own mortality into sharp focus. Still, circumstances were decidedly different. This individual, the sister of a member, was developmentally challenged. Chronologically, she was sixty-five. Intellectually and emotionally, she was pegged at between 4 and 5.
In many ways, it was a sweet service with gentle remembrances, hints at her understanding more than she let on, vignettes of her idiosyncrasies that were at once endearing and maddening. As the casket was lowered (I had officiated at the funerals of her parents), my mind drifted back to the many discussions I had with her sister. Mom refused to place her in a group home or other such facility and so it fell to the family to care for her. When mom and dad were gone, her lone sister ultimately determined that some sort of living arrangement compatible with her needs was in order. A wrenching decision making process ensued filled with the predictable elements of guilt, shame and relief. The staff of that group home and a good part of the personnel from ARC came to the graveside service. If there are people who do God’s work in this world, they certainly qualify.
We hear the phrase “quality of life” pop up in discussions that usually revolve around end-of-life issues. I have in my files the medical directives and living wills of dozens of congregants and friends (all of whom expect me to out-live them) giving very explicit and precise instructions that range from “do everything possible to keep me alive” to “do not resuscitate.” And, interestingly, this is not an “express;” sentiments cover an extraordinary variety of alternatives. When we usually think of quality of life, we measure the capacity for sentience and mobility and how they conflate with the wishes of the patient. How many times have we heard “He/she wouldn’t want to live like this?” To be honest, what is written on paper when one is healthy doesn’t always harmonize with a person’s sentiments when we are confronted with stark and immediate choices.
The question that began to take shape was whether the same margins apply when the “life” is already diminished and has been so since its very beginning? In an effort to purify the master race, Hitler sterilized and ultimately murdered developmentally challenged people within the reach of the Third Reich. We have (with that and other memories still fresh) come a long way and have grown to realize that “quality of life” is both highly subjective and stubbornly relative. And so, this woman/child died with every reasonable effort to keep her alive and comfortable. In the end, hospice did its work and her passage into eternity was gentle and humane.
I recount this story simply to underscore the reality that all is not black and white when we venture into the realm of what constitutes “quality,” of what represents life. The tale provides no resolution. In fact, while recounting this soul’s end, it opens the door to the beginning of a conversation for which there are no perfect or neat answers. And while ales iacta est, the die may be ultimately and irrevocably cast, the crucial principle at work must be built around care, empathy and sensitivity.