In a first-of-its-kind study, older patients from several major U.S. ethnic minority groups identified barriers to the kind of care they would prefer at life’s end. While all participants said that high-quality end-of-life care (EOLC) was important to them, the majority reported facing roadblocks to such care. The two most commonly cited barriers were physician behaviors and financial constraints.
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“Our study is unique, as we used mixed methods to better understand a complex and sensitive research question with multiethnic participants,” write the authors of a report published in the Journal of Palliative Medicine.
“[T]here is an urgent need to train and support doctors and allied health professionals in conducting culturally effective end-of-life conversations early in the trajectory of any chronic and serious illness,” they continue, “in order to facilitate dignity at the end of life for diverse Americans.”
Investigators analyzed the data from a cross-sectional survey of 315 participants (age, ≥ 50 years) recruited from community-based senior centers in five California cities from 2013 to 2014. Participant race/ethnicity was Caucasian/Hispanic (37.1%), Asian-American (50.8%) and African-American (12.1%).
Interviews were conducted in each participant’s preferred language, with the assistance of medical interpreters in seven languages (English, Spanish and five Asian languages). Demographic data were collected, but no personal identifiers were requested so that participants would feel comfortable speaking freely.
- All participants said they valued high quality EOLC.
- 60.6% reported the existence of barriers to receiving such care for members of their
- There were no significant differences in the ranking of barriers by importance across ethnic groups (although there were differences according to education level).
Major Perceived Barriers to Quality Care:
- Lack of financial means or lack of health insurance
- Physician behavior or practice style, as reported in patients’ perception that physicians lack empathy, give vague answers to questions of concern to patients and families, have too little time for such discussions or do not listen
- The patient-physician “communication chasm,” for example: language barriers, seniors’ inability to hear well or understand medical terminology and the patient’s lack of understanding of end-of-life options
- Family members holding differing beliefs about death and dying
- Health system barriers, such as lack of help in completing an advance directive and a medical system that insists on doing “everything possible”
- Cultural/religious barriers
Level of education was the only demographic characteristic found to influence the ranking of barriers. Those with no formal education ranked financial issues as the biggest barrier, while those with elementary-school-level education and above identified physician behaviors as the greatest barrier. Both groups ranked the “communication chasm” as the second biggest barrier.
While the patient’s health literacy is important in routine medical encounters, it is not usually critical, the authors note. “End-of-life situations, however, are different in that they require patients to take an active role, partner with their doctors, and make complex and high risk decisions in the face of an uncertain future,” they write.
The major underlying problem to providing high-quality EOLC for ethnic minority populations is twofold, suggest the authors. First, there is the need to deliver culturally competent end-of-life care, as the U.S. population shifts to a larger percentage of minorities. Second, the country’s health system is fragmented, and has not trained or rewarded physicians to communicate effectively with their patients about end-of-life healthcare choices. The authors recommend several ways to target these problems.
- Reform healthcare to ensure that diverse Americans receive high quality EOLC regardless of their socioeconomic status.
- Train physicians to communicate with empathy and cultural effectiveness. Historically, the fragmented health system has encouraged treatments and procedures and not conversations.
- Integrate health education into high-school curricula.
- Encourage physicians to acquire skills in explaining complicated medical issues simply yet comprehensively.
- Encourage patients to take the lead in discussing their care choices with their families.
- Create incentives for physicians to become skilled in primary palliative care and in giving appropriate referrals to palliative medicine specialists.
- Use coordinated teams of interdisciplinary experts to help patients navigate the complex interplay of medical, spiritual and existential issues at the end of life.
“There is so much generalization and stereotyping...about how ethnic minorities want everything done, irrespective of how effective these treatments might be at the end of life,” says lead author V.J. Periyakoil, MD, clinical associate professor of medicine at Stanford University School of Medicine. “I decided that we needed to go into their communities and ask them what they want.
“It’s a profound responsibility choosing whether a person dies at home or in a hospital, what types of treatments to attempt or forgo and when to limit or withdraw burdensome interventions and allow a natural death,” says Periyakoil. “In fact, the only right decision is what the patient wants.”
Source: “Patient-Reported Barriers to High-Quality End-of-Life Care: A Multiethnic,
Multilingual, Mixed-Methods Study,” Journal of Palliative Medicine; Epub ahead of print, November 17, 2015; DOI: 10.1089/jpm.2015.0403. Periyakoil VS, Neri E, Kraemer H; Stanford University School of Medicine and VA Palo Alto Health Care System, both in Palo Alto, California.