Talking about death is never easy, even for medical professionals. But a new study has found that difficulty discussing end-of-life medical treatments is complicated further when there are ethnic differences that can create subtle barriers between the doctor and patient.
A survey of more than 1,000 medical professionals by researchers at Stanford University’s Medical School found that virtually all of them encountered difficulties holding end-of-life discussions with their patients.
The difficulty was magnified by cultural and ethnic differences that hindered discussion about end-of-life treatment, with 86 percent rating them as “challenging.” Asian physicians reported the most struggles (91.3 percent), followed by African American (85.3), Caucasian (83.5) and Latino doctors (79.3), according to the study, which appeared Wednesday in the journal PLOS ONE.
Miscommunication or a lack of communication arise for a variety of reasons. Sometimes it’s because the physician isn’t familiar with the religious or spiritual beliefs embraced by some families and hasn’t been trained to understand them. In some cultures, for example, people believe that talking about death is an ill omen that speeds its likelihood, the study says.
Other times, the barriers exist simply because of language differences, even when medical translators were brought in. That’s because medical jargon is not always easily translated. Neither are common phrases such as “heroic measures.” The medical translators can also contribute to the distance between a provider and patient, making it harder to talk frankly about death.
Other hindrances to communication came about because of greater distrust of medical professionals among some ethnic groups because of the legacy of the Tuskegee experiments and less “health literacy,” or familiarity with health-care procedures.
Yet planning end-of-life care has become a more urgent topic of discussion in the United States as its population ages and becomes more diverse — a phenomenon the paper calls the “silver-brown tsunami.” By 2050, the number of Americans 65 or older will more than double to a projected 88.5 million, compared with 40.2 million in 2010, the Census Bureau says. The United States is also trending toward a minority-majority society by 2042.
At the same time, the federal government is eager to hold down rising health-care costs, a major portion of which are incurred in the last years of life. An estimated 78 percent of costs in the final year of a person’s life is spent on high-intensity, costly measures that are often ineffective and that many people associate as intrusive and clash with their idea of a peaceful death. What’s more, the study says ethnic patients are more likely to incur higher end-of-life costs and are less likely to use hospice care.
And then there is the human cost, borne by people whose prolonged deaths become needlessly agonizing for the patient and their loved ones.
“In my practice, I see patients and families, especially terminally ill, dying persons, [and] a lot of times they have never had a conversation with their doctor about what they want in terms of care options as they get close to the last chapter of their lives,” VS Periyakoil, a physician who is the study’s lead author, said in an interview Wednesday. When patients fail to have those conversations and agree on directives and then fall ill, they can set themselves up for long, futile struggle with treatments and procedures that make their experience of dying even worse.
“The health-care system is like a river,” Periyakoil said. “If they are not clear about what they want or don’t want, the system sweeps them along and they end up in the ICU.”
Some patients are reluctant to broach the topic because they worry that doctors would interpret end-of-life directives limiting care as withholding treatment, Periyakoil said. But she said doctors usually will go overboard in the absence of clear directives not to.
“Our bias is always to do more and more,” she said. “If there is one thing people need to hear, it is not that doctors will undertreat them. It’s that doctors will overtreat them.”
The survey took place between 2010 and 2012 at Stanford Health Care (formerly called Stanford Hospital & Clinics) and the Veterans Affairs Palo Alto Health Care System. The questionnaire was given to people in 11 medical specialties, including surgeons, psychiatrists, pediatricians and others.
Periyakoil, who said she believes her study is the first major survey of doctors’ views on discussing end-of-life barriers, said she believes the culture is reexamining attitudes toward death and recapturing control over its practices from the medical profession in much the same way that the birthing process changed from one driven by doctors to one driven by parents. To that end, Stanford has also promoted its “Letter Project,” by which people can obtain templates for writing simple letters to their physicians explaining their wishes for end-of-life care.
“In the same way to me, death is an intimate, social event,” Periyakoil said.