How well can this whole process work?
If we agree that the definition of ‘working really well’ is that an individual’s desires are understood and respected, then the answer is, it can work really well.
In the mid 1980’s, local physician’s in LaCrosse, Wisconsin (population ~51,000) decided to start asking their patients about their end of life priorities and desires. They started at one local hospital with a focus on patients with kidney failure, but then took their lessons learned and brought the conversation to the population at large. At first, some patients were taken aback when these topics came up during annual physicals or other primary care visits. But the physicians knew what was at risk, and they persisted. It was a grass roots effort that was completely free of any bureaucratic oversight. The physicians weren’t getting paid for the time they spent, but they knew it was the right thing for their patients, the families, and the community as a whole. In fact, hospital revenue declined due to less aggressive treatments.
Successful? Absolutely! By 1995, 85% of La Crosse residents had advance planning documents in their records. By 2015, the number had risen to 96%. And perhaps most important, when loved ones needed decisions made on their behalf, “The norm became the family saying, ‘We know what to do; we had a conversation’ “, says Bud Hammes, a medical ethicist at Gundersen Health System, one of Lacrosse’s two hospital systems. Subsequent research indicated that, unlike other communities where Advance Directives were often ignored, among those who died, the care they wanted nearly universally aligned with the care they received. And with patients generally choosing less aggressive courses of treatment, the side effect is that end of life costs plummeted to about 32% less than average. The city has some of the lowest end-of-life spending in the country.
“We want every adult to have the conversation. It’s all about the conversation. And the document is of course important, but if everyone can have this conversation, we’d all better for it. We could shift the culture in a big way.”
John Maycroft, Wisconsin Medical Society
The program, dubbed ‘Respecting Choices’, is now spreading across Wisconsin. Minnesota has a similar program in progress.
More excellent resources …
Being Mortal: Medicine and what Matters in the End by Atul Gawande. From Amazon; ‘In Being Mortal, bestselling author Atul Gawande tackles the hardest challenge of his profession; how medicine can not only improve life but also the process of it’s ending.’ Dr. Gawande received overwhelmingly positive Customer Reviews for this work.
How Doctors Die: It’s Not Like the Rest of Us, But It Should Be by Ken Murray, MD, Clinical Assistant Professor of Family Medicine at USC. An excellent insight into a physician’s perspective.
Advanced Care Planning is a non-profit organization dedicated to empowering patients and families with knowledge about their choices during the final phases of life.
The ACP Patient and Family Planning Checklist guides the preparation for and conduct of a conversation with loved ones about your wishes. The link above is to the checklist in English, but it is also available in other languages including Spanish, Chinese, Persian, Korean, and Vietnamese.
ACP Educational Videos on Advance Care Planning for Health Adults; Having the Conversation (with loved ones about your wishes); Dementia; defining your Goals of Care; CPR; Dialysis; Palliative Care; and Hospice. Some are specific to healthy adults and those with advanced diseases or cancer.
Knocking on Heaven’s Door; The Path to a Better Way of Death, by Katy Butler. Butler, an acclaimed journalist, writes of her experiences as her parent’s medical advocate during their declining years. ‘They lived good lives, and hoped to die good deaths. One succeeded, one failed.’
Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life, by the Committee on Approaching Death, Institute of Medicine.
How America’s refusal to talk about death hurts the elderly, by Sara Kliff. A good overview from the perspective of a sibling dealing with elderly parents, with liberal reference to Dr. Gawande’s work.
5 moving, beautiful essays about death and dying, by Sarah Kliff.
Invaluable lessons about what a “good death” might look like, by Shoshana Ungerleider, MD. A young doctor learns the value of asking her patient’s what their goal for treatment is.
The Fall of Freddy the Leaf: A Story of Life for All Ages by Leo Buscaglia. From Amazon; ‘This story … is a warm, wonderfully wise and strikingly simple story about a leaf named Freddie. How Freddie and his companion leaves change with the passing seasons, finally falling to the ground with winter’s snow, is an inspiring allegory illustrating the delicate balance between life and death.’
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