July 17, 2017

Improving End-of-Life Care

Category: 
Health and Medicine

A moving documentary on end-of-life care in America opens with people being stopped on the street during their daily routines and asked where they would prefer to die. Many were surprised by the question, but their answers were virtually uniform: “With family. In my lover’s arms. Home with family. In a quiet, peaceful place. Surrounded by friends. Away from strangers. Not in a hospital.” When terminally ill patients are asked the same question, their answers are even more aligned, yet as we know from personal experience, this rarely happens. Why?

In our society, particularly among the medical community, death is often seen as failure. “Battling” cancer has a noble connotation while hospice and palliative care are associated with throwing in the towel. We have a psychological bias toward longevity over quality of time remaining. We should do a better job of thinking and planning for the event well before it is on our doorstep.

The complex, emotional issues of end-of-life care are not unique to the United States, but we are behind the curve in developing a plan to address the problem. Over the next 15 years, nearly 20 million baby boomers will die, most while suffering from multiple chronic conditions that make it challenging to find a balance between longevity and quality of life. The cost of getting it wrong, both for individual quality of life and for financing health care, is enormous. The key to getting it right is understanding what matters most to patients at the end of life and matching care plans to those priorities.

In an initiative spanning more than a quarter century, over 95% of the seniors in southwestern Wisconsin now have advance directives during the last two years of their lives, and their medical teams abide by them over 98% of the time. The keys to success in Wisconsin were highly engaged partnerships between health care providers, patients and their families, social networks, clergy, and community resources.

We can build on this foundation and increase patient use of advance directives. There is no “right” amount of care at the end of life, but we can match a care plan to the patient’s informed preference, within the boundaries of the doctor-patient partnership. An 89-year old grandmother who wants to see her grandchild get married in a month may choose care that for another patient would be disproportionate. A guiding principle when helping a patient determine the “right” amount of care is an observation by Nietzsche: “Those who have a ‘why’ to live for can bear with almost any ‘how.’”

To begin closing the gap between how patients tell us they want to die and what ultimately happens, we – as caregivers – need to help patients think about what they want at the end of life long before it is upon them, and we begin by having a conversation about what matters most.

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