Justice, Luck & Responsibility in Health Care by Yvonne Denier Chris Gastmans & Antoon Vandevelde

Author:Yvonne Denier, Chris Gastmans & Antoon Vandevelde
Language: eng
Format: epub
Publisher: Springer Netherlands, Dordrecht

7.5 Facing the End of Life Responsibly

I mention the art of dying mainly to distinguish it from the ethics of dying. The art of dying is primarily a matter of prudence and discernment; it is the skill of arranging for an end that is good for the person who is approaching the end of life. But our new kind of death also forces upon us troubling questions about ending life responsibly. When death came unpredictably and fairly quickly, there was little need for talk of responsibility. And a death that comes too soon is morally simpler, no matter how emotionally and even spiritually difficult it may be. We take our loved one to the hospital and the doctors do what they can to avoid or postpone death. And when they can do no more, there is moral solace in knowing that we all did what we could. We grieve with the survivors and then we try to move on. But we move on without a burden of guilt or gnawing moral questions about whether we did the right thing.

Ethics at the end of life is, as I understand it, primarily other-directed. Those who are still in positions of power and public responsibility will have many others to consider as they approach death, but for most of us, ethics at the end of life needs to consider only the interests of family and close friends. The ethics of dying grows out of recognition that the lives of close friends and family are interwoven. Because the lives of others I care deeply for will be dramatically impacted by choices I make at the end of life, I ought not to make decisions based simply on what I want for myself. That would be irresponsible – inconsiderate and selfish in the extreme.

The search for a responsible ending focuses on the impact of our last years on our family and loved ones. When we can no long take care of ourselves, our care must be provided or paid by someone, and our ongoing medical treatment must also be paid for by someone. If family caregiving is desired or sought or required, the rest of the family will need to make major adjustments in their lives to take care of us.

Perhaps I need to emphasize that I am not talking only or even primarily about medical resources. Even if I do not consume vast quantities of medical resources at the end of my life, I will likely consume vast family caregiving resources. The care I require could easily overwhelm the “caring capacity” of my partner or my sons’ families, forcing them to neglect or give short-shrift to their other responsibilities and to neglect care for themselves.

A literature is beginning to accumulate about the effects of long-term caregiving on family caregivers. The famous SUPPORT study was one of the first to document lifestyle changes and burdens of end-of-life care in the U.S. (Covinsky et al. 1994). The SUPPORT study included only patients whose APACHE score predicted they had less than 6 months to live.

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