Why is it so hard to discuss end-of life-care? #ahcj15

A provocative examination of end-of-life care brought this question into sharp focus for journalists attending Health Journalism 2015. Paul Kleyman, who moderated a panel on the topic, noted that essential end-of-life elements first reported on 30 years ago – such as affordability and death with dignity – are still relevant and have intensified.

“Lately, there has been lots of attention around the “right-to-die” movement. Just as important as that is exploring the right to quality of life until the end,” Kleyman, director of the Ethnic Elders Newsbeat at New America Media, said at the April 24 session.

V.J. Periyakoil

V.J. Periyakoil

V.J. Periyakoil, M.D., who is director of palliative care education and training at Stanford University School of Medicine, specializes in multicultural palliative care and in helping families and physicians understand the related cultural components. “Providing good end-of-life medical care is not enough,” she said. “Providers must become more skilled at having effective end-of-life conversations.”

These conversations are particularly challenging for physicians to have with patients from certain ethnic groups, according to a new study of Stanford physicians conducted by Periyakoil. Of 1,048 respondents, only eight did not report any barriers in holding these conversations. More than 85 percent of those who had challenges specifically mentioned communication struggles with patients from ethnic backgrounds. Major barriers include:

  • Language and medical interpretations.
  • Religious or spiritual beliefs of the patient and family.
  • Provider ignorance of patient’s cultural beliefs values and practices.
  • Cultural differences among patients and family in accepting the truth about prognosis and in decision making.
  • The patient’s level of health literacy.
  • The level of a patient’s mistrust of doctors and the health care system in general.

Treatment may not always be the best option, according to Periyakoil. Dying in the United States has become extremely expensive, with a huge proportion of Medicare’s budget spent on treatment during the last two years of life. Even so, she noted, “higher costs are not associated with high quality of end of life care.”

Focusing conversations on what matters most to patients is the “secret sauce” of ensuring a gentle, comfortable and dignified death. Providers must improve their understanding of how factors such as culture, ethnicity, religion and spiritual beliefs influence how people handle the truth and make health decisions. Not everything needs to be medicalized, she stressed.

“Patients and families should take back dying from hospitals and move it to a homelike environment,” she said. “It becomes our job to coach them and help them understand it may not always be in their best interests.”

Specificity is a critical element in end of life and palliative care discussions, said panelist G. Jay Westbrook, M.S., R.N., C.H.P.N., who is clinical director of Compassionate Journey: An End-of-Life Clinical and Education Service. “When patients say ‘do everything,’ what is it that they really mean?”

For example, do they want to be able to participate in a major life event like a family wedding or graduation? When they say they want dignity, are they really asking for respect? This can be especially confusing for certain cultures where different words have different meanings.

“Every interaction with doctors is a cross-cultural interaction, complete with its own language like progressive or terminal,” said journalist Katy Butler, author of the best-selling book “Knocking on Heaven’s Door.” Butler described her parents’ desire for “good deaths” and how medicine got in the way. She pointed out that as a society, we don’t do a good job in discussing end of life care. “We don’t use words like fatal or incurable – we have vast euphemisms that make it very difficult for families to grapple with reality.”

Journalists can do a better job of covering end of life issues, Butler said. “The best stories have a strong personal element, but also talk realistically about outcome studies and about costs.”

Reporters should incorporate all three elements into end of life stories. This avoids the danger of sentimentality and help readers think about whether a treatment is actually beneficial. “Ask about the costs to our culture and to our society,” she advised.

She spoke about “the gray zone” in health care – the area between active living, when curative medicine is effective, and active dying, when funding for hospice is available. In the gray zone are fragile patients, those with incurable, chronic fatal conditions where a cure is unlikely. The risk are high, with smaller payoffs. “If we continue to treat instead of plan for a good end of life, then the quality of life, family relationships and meaningful death are in peril,” Butler said.

Journalists are often guilty of over-optimism when reporting on so-called ‘miracle’ cures, she noted, and listed five gray zone reporting myths:

  • A cure is “just around the corner.”
  • Technology will save the day.
  • Treatment is always a good idea.
  • Death is a tragedy and must be fought.
  • Money is no object.

“As journalists, we have to think of ourselves as giving information rather than hope. Hope is oversold,” she said. Medicine is its own subculture and journalists need to be anthropologists.

For more on covering end-of-life and palliative care, check out this tipsheet.

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