Column: No one wants to talk about death, but you need to anyway

Published 12:00 am Wednesday, January 1, 2014

In a culture in which speaking about death and dying has long been taboo, and with a health care system that does not foster such conversations, it should come as no surprise that only about 30 percent of Americans have advance directives for health care on file. Even then, an advance directive is just a paper form — and often one that is not accessible at the point of care.

More meaningful planning occurs when an individual has a health care agent (i.e., a person with the legal authority to make health care decisions on another’s behalf). An effective person serving in this role must not only know and understand another’s wishes for care but also be willing and able to honor them.

The consequences of forgoing this kind of planning are severe. The default in American medicine is “to do everything,” which lends itself to aggressive care and intensive-care unit stays that can be painful for patients, their loved ones and be harmful for the health-care system as a whole.

In the words of a friend who is a resident, “There is nothing worse about my job than making life-or-death decisions in the ICU. It isn’t the place to explore these questions for the first time, and there is never a right answer.”

Pull the plug, and you are giving up on mom. Keep treating aggressively, and you are torturing her — often to no avail.

Despite unfounded talk of so-called death panels, there’s evidence that shows talking about death and dying may not be as off-limits as we think. A 2012 survey by the California Healthcare Foundation found that 79 percent of patients who responded wanted to talk about their wishes for end-of-life care with their doctors. This is especially encouraging given that structured systems to support advance-care planning conversations are growing at an increasing rate.

For instance, in La Crosse, Wis., which has been called America’s best place to die because the majority of the population receives care in concordance with their values and wishes, Gundersen Health System pioneered a program called Respecting Choices. This is a systematic approach to advance-care planning built around detailed conversations led by trained facilitators that include patients and their chosen health care agents. These conversations result in a mutual understanding between patient and agent of the former’s wishes for care, along with clear and accessible documentation of those wishes. The approach is being adopted with great success by much larger health-care systems across the country.

In addition to health care systems trying to institutionalize comprehensive advance-care planning, there has also been an increase in self-help tools that guide individuals and their families in talks about the end-of-life process. A great example is the Conversation Project (www.theconversationproject.org), which is taking part in a campaign called “Let’s have dinner and talk about death.” This project encourages and assists families to “transform the seemingly difficult conversation about death into an intimate shared experience.”

Even outside of formal programs, everyone can talk with their families and friends (ideally including a designated health care agent) about their values, beliefs and how these might translate into health care preferences in scenarios that we prefer not to think about. These conversations become even more important for individuals who have chronic diseases and are likely to experience a decline in health.

Having advance-care planning conversations can be hard and even scary, but what’s even scarier is not having them. As we institute our New Year’s resolutions, give yourself and your loved ones peace of mind in an area that may matter most.

— Brad Stulberg is a population health consultant at a large health care system, where his work includes advance-care planning. He wrote thisfor the Los Angeles Times.

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