Photo: V.J. Periyakoil, MD, directs Stanford University’s Palliative Care Education & Training Program (Richard Springer)
SANTA CLARA, Calif.–A provocative examination of end-of-life care brought this question into sharp focus for journalists attending the recent Health Journalism 2015 conference here. 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,” said Kleyman, director of the Ethnic Elders Newsbeat at New America Media.
Good Care Not Enough
Vyjeyanthi “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 and Palo Alto VA hospital physicians conducted by Periyakoil. Of 1,040 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.”
What Matters Most to Patients
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,” said Westbrook. A hospice nurse for three decades, he also managed the care for his late wife, Nancy.
For example, do patients 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 bestselling 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.”
She urged journalists at the conference to do a better job of covering end-of-life issues. “The best stories have a strong personal element,’ Butler said, but they also talk realistically about studies examining patient outcomes and about costs of treatment decision in suffering as well as dollars.
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.
“The Gray Zone” of Care
Butler 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 that should be red flags for both reporters and their readers:
• 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 she called on journalists need to be like anthropologists in telling these stories.
Liz Seegert (@lseegert), is the topic editor aging for the Association of Health Care Journalists, which provided permission to adapt this article. Seegert’s work has appeared in Kaiser Health News, The Atlantic.com, AARP.com, and others. She is a 2015 Journalists in Aging Fellow of New America Media and the Gerontological Society of America.