Talking about the end of life

Last week, an Institute of Medicine panel released a report that critiques US handling of end-of-life healthcare and suggests improvements. Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life recommends improved communication between patients and providers so that patients can decide what kind of end-of-life care they want, and then receive it. Many people would prefer to die at home, with their care focused on making them comfortable — not in a hospital undergoing tests and procedures that might prolong their life but diminish the quality of their remaining time. Under our current system, the latter option tends to be the default, rather than one of multiple options from which patients can select.

The New York Times’ Pam Belluck highlights some of the IOM recommendations that can be accomplished with and without legislation — and the difficulty of getting any relevant laws passed in the current political environment:

Many of the report’s recommendations could be accomplished without legislation. For example, the panel urged insurers to reimburse health care providers for conversations with patients on advance care planning. Medicare, which covers 50 million Americans and whose members account for about 80 percent of deaths each year, is considering doing just that, prompted by a recent request from the American Medical Association. Some private insurers are already covering such conversations, and many more would if Medicare did.

But some recommendations — like changing the reimbursement structure so that Medicare would pay for home health services instead of emphasizing hospital care, and so that Medicaid would provide better coverage of long-term care for the frail elderly — would require congressional action.

“We know that there may be a need for new legislation to be introduced to accomplish that, and we recognize that that’s harder to accomplish in a politically charged environment,” said Dr. Philip A. Pizzo, a former dean of the Stanford University School of Medicine and the committee’s other chairman.

Regardless of insurer coverage decisions, we should all be having conversations with our loved ones about how we’d like to die, and what kinds of criteria we each want to use for decisions about life-prolonging interventions. In a 2010 New Yorker piece on end-of-life care, Atul Gawande gives the example of a patient who told his daughter, “Well, if I’m able to eat chocolate ice cream and watch football on TV, then I’m willing to stay alive. I’m willing to go through a lot of pain if I have a shot at that.” We each have our own preferences, but in order for those preferences to be honored, we have to articulate them, preferably to both our family members and our physicians.

Ezekiel Emanuel, director of the Clinical Bioethics Department at the US National Institutes of Health, shares his personal criteria in The Atlantic, in a provocative piece entitled “Why I Hope to Die at 75.” He states up front that he does not advocate for the free availability of euthanasia, and repeatedly emphasizes that this is his own personal preference, rather than a prescription for the US population. What he intends to do, he explains, is stop receiving several kinds of healthcare once he reaches age 75, and leave himself open to dying from cancer, pneumonia, flu, or another such disease. I imagine most people will have different views about how long they want to live, but it’s an interesting way to start individual and national conversations that we need to be having.