Death may be the only thing we know we’ll have in common with those around us. Crafting a “good death” is not easy and success is never guaranteed. But a New York Times Room for Debate suggests that society can step up and do much better.
As a child, Joseph Andrey was a vaudeville performer. As a young man, he was a soldier. And as an old man, he was something of a prisoner to a health care system that wanted to do things its way, regardless of his preferences, according to an article in the New York Times. His story points out many of the challenges that a family in America can face at the end of life when the individual who’s dying wants to stay home but the health care system disagrees.
A new Institute of Medicine report describes some components of a good death: “For most people, and except for those who die suddenly as a consequence of an accident or trauma, death results from one or more diseases that must be managed carefully over weeks, months or even years, through many ups and downs. Ideally, health care harmonizes with social, psychological, and spiritual support as the end of life approaches. To this end, care near the end of life should be person-centered, family-oriented, and evidence-based.”
That is not, however, the type of death the report routinely documented. Palliative care at the end of life, designed to provide comfort when cure is not possible, often fails to meet needs, it said.
Policies and payments that support high-quality end-of-life-care are largely absent or inadequate, for instance.
In the Times debate, Richard Mollot of the Long-Term Care Coalition points out that regulations that were put in place to prevent harm are often circumvented or ignored.
“It is up to the government to fulfill its mission to protect elderly and disabled consumers by improving monitoring of care and holding providers accountable -- both criminally and through meaningful civil penalties -- when they betray the public trust. Long-term care is simply no place for ‘caveat emptor,’” he wrote.
Karen D. Lincoln, associate professor in the University of Southern California School of Social Work and director of the Hartford Center of Excellence in Geriatric Social Work, wrote that minorities bear a heavy burden: “Between 1999 and 2008, the number of whites in nursing homes had decreased by 10 percent, while the number of African-Americans increased by 11 percent and the number of Latinos by 55 percent.”
The problem is profits favor intensive and expensive treatments over honoring the wishes of people at the end of their lives, wrote Joan M. Teno of Brown University’s health system. “Until our current health care system is no longer based on piecework reimbursement, and becomes accountable for person-centered care, we all need vigilant advocates to protect us from this ‘medical-industrial complex,’” she wrote.
Several others looked at what must change to make end-of-life care more affordable and amenable to the wishes of those who are making the journey.
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