PHILADELPHIA -- People often speak of the need for cultural competence when discussing issues in end-of-life care, but don't forget about the need for "cultural humility" as well, Kimberly Curseen, MD, said here Friday at the annual meeting of the American College of Physicians.
Cultural humility is defined as recognizing the limitations of one person's understanding of how another may define their own cultural identity, said Curseen, who is director of Supportive and Palliative Care Outpatient Services at Emory Healthcare in Atlanta. "Cultural competency has been a wonderful movement in healthcare to take in cultural considerations in clinical decision-making ... The only problem with cultural competency alone is that you could miss things."
"What I often tell [my medical students] is to think about cultural competency; think about the barriers ... and then place [that] in a box and walk into the room and talk to the patient and ask them to tell you about themselves," she continued. "Let the patient tell you how they define themselves first before you bring in the 'checklist.'"
When it comes to the difficulty of having end-of-life conversations, "could we [physicians] be the problem? Yeah, we probably are," said Curseen. She referred to a of 1,040 physicians, which found that nearly all reported difficulties conducting end-of-life conversations with patients, especially with those of a different ethnicity than their own.
Some of the barriers included:
- Patient/family religio-spiritual beliefs about death and dying
- Doctors' ignorance of patients' cultural beliefs, values, and practices
- Patients' mistrust of doctors and the healthcare system
The problem seems to be especially acute among minority populations, she added. of conversations between 231 diverse hospitalized patients with advanced cancer and the 54 palliative care clinicians caring for them found that prognosis communication was less than half as likely to occur during conversations with black or Latino patients compared to other patients, and that among consultations in which prognosis was addressed, those involving black or Latino patients were more than 8 times less likely to contain optimistic prognoses compared to others.
"I call this the wheel of self-protection, or the self-fulfilling prophecy," said Curseen. "You assume I'm afraid to talk about it, so you don't talk about it ... you're distressed, then this makes you more likely to not talk about it, and then I die after 3 weeks on a ventilator which I may or may not have wanted because nobody's ever addressed it with me," she said. "It's not because the providers are trying to be insensitive, it's because the providers are trying to be sensitive."
Physicians' biases are also an issue, she said, citing a 2016 article indicating that most physicians were unaware of having them.
"When we're about to have an end-of-life discussion, or any difficult discussion with somebody we may not relate to, we need to be able to name that and be aware of that," Curseen said. "This plays out definitely when providers and patients are trying to communicate. We both walk in with assumptions about each other, take those assumptions and try to adjust our behavior ... to how we want counterparts to think about themselves. If you come in with an open posture, a willingness to learn -- 'I come in peace' -- people are much more likely to talk to you."
But there are also systemic barriers to having that conversation, especially when it comes to patients and their primary care physicians, explained Ramona Rhodes, MD, MPH, associate professor of internal medicine at UT Southwestern Medical Center in Dallas. "There's a fragmentation of care that can arise. When patients with [a] serious illness are hospitalized, they are often cared for by physicians who don't know them, and their primary care provider or subspecialist who is addressing the serious chronic illness they have often isn't consulted or available, for a variety of reasons."
To further examine the barriers that arise when it comes to discussing end-of-life planning and providing palliative care and hospice care, Rhodes and colleagues did interviews with 12 providers whose experience with hospice and palliative care ranged from 2 to 20 years, with varying levels of exposure to diverse populations. Barriers identified included patients' lack of knowledge of their prognosis, a patient preference for aggressive treatment, family members' resistance to hospice, and lack of insurance.
So with funding from the Agency for Healthcare Research and Quality, Rhodes and colleagues created a program called "Planning for the Care You Want." The program materials contained culturally sensitive information about advance care planning and were used by an African-American healthcare adviser for counseling and follow-up.
They tested their intervention in a trial involving 76 African-American patients with stage 3 or 4 breast, lung, colon, or prostate cancer who were randomized to the counseling intervention versus usual care; a total of 34 patients ended up receiving the intervention. All study participants were ranked in their "stage of change in intent" regarding advance care planning; stages included precontemplation, contemplation, preparation, action, and maintenance.
They found that patients who received the intervention were more likely to have a positive change in stage of intent to discuss advance directives or living wills with their providers, but there were no significant differences in stage of intent to discuss palliative care or hospice, "which we found surprising," Rhodes said. "We still think there is a lot of work to be done."