Black patients with serious illness receive worse pain management, poor communication
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Black patients with serious illness receive inferior pain management and poor communication from providers compared with their white counterparts, according to data released by Center to Advance Palliative Care.
Findings from the CAPC’s “Health Care for Black Patients with Serious Illness: A Literature Review” also showed a disproportionate burden on family caregivers of Black patients vs. white patients.
“Information was coming across a lot of people’s desks and into their inboxes about the disparities that exist for Black patients — I think COVID in particular highlighted these,” Brittany Chambers, MPH, MCHES, director of health equity and special initiatives for the Center to Advance Palliative Care, told Healio. “That was the part of the impetus behind us taking a deeper dive and trying to understand what’s going on and what we can do.”
Chambers spoke with Healio about the disparities the review identified, the multifactorial drivers of racial health disparities, and the findings that surprised her.
Healio: What inspired you to conduct this study?
Chambers: The review is part of a larger environmental scan we are doing. The point of the project is to highlight interventions that will try to address some of the disparities we know exist. Before taking action and looking at interventions, we needed to understand what’s been studied and what is known about the experiences of Black patients with serious illnesses and their caregivers. So, we conducted this literature review first to have a grounding in the science and the evidence base. We basically asked two questions: What goes wrong for Black patients and their caregivers? What are some interventions that have been published that begin to address some of these disparities?
Healio: Why do you think Black patients experience worse pain management?
Chambers: We noted that pain was not assessed and treated at the same rate between Black patients and their white peers who were diagnosed with a serious illness. That came out very strongly in the literature review. Additionally, it surprised us that this finding didn’t relate strictly to pain, but just any symptoms. For example, some studies reported that Black patients weren’t prescribed bowel regimens or benzodiazepines that would help with constipation.
I think part of this has to do with communication and relationships with the clinicians. Some of the studies discussed the fact that Black patients felt there was a lack of communication with their providers, or they just didn’t feel like they had a positive relationship with their doctor. So, if there isn’t a good relationship, one can assume that the patient is going to have a poor experience.
Healio: What did your review find as far as Black patients with sickle cell disease?
Chambers: In a small, qualitative study of Black patients with sickle cell disease, some patients reported that they had been accused of pill-seeking behavior. Sickle cell disease impacts Black patients at a higher rate, and it is very painful. This review didn’t delve into issues of why these disparities happened.
Healio: What did you find in terms of gaps in cultural competency and diversity training?
Chambers: Health organizations that provided for people with serious illnesses identified cultural competency training and workforce diversity as areas that could be improved. For example, some studies showed racial concordance was an issue, as far as not having an ample number of Black nurses, social workers or chaplains. The diversity among the providers didn’t really match the patients they were caring for. Studies have shown Black patients may be more trusting if they see someone who looks like them. They may feel more comfortable talking about their experiences with serious illness if they are being cared for by someone who belongs to their community. Even if that’s not possible, we’ve learned through the studies that there could be more cultural competency training or sensitivity training to improve the quality of relationships.
Healio: Your study also identified patient-level barriers to Black patients accessing pain management for cancer. Can you discuss this?
Chambers: In one of the studies we identified, Black patients with cancer discussed their fear of addiction as a potential barrier to pain management. They also had concerns about constipation and other associated symptoms. In this study, the patients stated that they wanted their providers to focus more on curative treatment than on pain control. They didn’t understand that these go hand-in-hand. Curative treatment is not possible for all patients with cancer, but when it is, it is accompanied by pain control. It’s not mutually exclusive.
Healio: Did any of the findings surprise you?
Chambers: Some findings around the caregiver aspect surprised me. A 2018 study that focused on patients with dementia showed Black households provided more informal or unpaid caregiving compared with white households. Again, we didn’t study why, but anecdotally, I think Black families feel compelled to take care of a family member with serious illness, no matter what. They perceive it as their duty. I think that is a cultural aspect. Another interesting finding, which we shared in one summary statement, is that mistrust of the U.S. health care system has a role in the decision-making of Black patients with serious illness. Some studies reported that Black patients felt if they completed an advance directive, their health care providers would no longer treat them; they’d give up on them in the curative sense. I think some educational opportunities to explain the purpose of an advance directive would be helpful.
Healio: Is there anything else you’d like to mention?
Chambers: We hope this literature review sets a foundation for the way we look at other minority groups or underserved populations. There’s no monolith — every cultural group should be represented. So, we’re making sure we use this culturally responsive approach to facilitate how we approach other underserved populations.
For more information:
Brittany Chambers, MPH, MCHES, can be reached at Center to Advance Palliative Care, 55 W. 125th St., Suite 1302, New York, NY 10027; email: brittany.chambers@mssm.edu.
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The Center to Advance Palliative Care. Health Care for Black Patients with Serious Illness: A Literature Review. Available at: www.capc.org/health-care-for-black-patients-with-serious-illness-a-literature-review/#key-findings. Published March 8, 2022. Accessed May 19, 2022.
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