Disparities, Diversity, and Palliative Care
Kimberly S. Johnson, MD, associate professor of medicine in the Division of Geriatrics and the Center for Palliative Care at Duke University, has studied racial disparities in end-of-life care, including barriers to the use of hospice.1
"African Americans use hospice care at substantially lower rates, despite having diagnoses that are common in hospice and a greater need for the kinds of services provided in hospice and palliative care—such as counselors, home health aides, and pain management," Dr. Johnson says. "African Americans face disparities in medical care, some of which could be reduced if they enrolled in hospice."
Her research confirms what others have identified regarding unequal utilization, disparities, and barriers to hospice and palliative care for people of color.2 Some of the factors that lead to these disparities include a lack of knowledge about hospice and palliative care—which sometimes is erroneously associated with care only provided at the end of life, leading to its involvement too late in the illness for the patient to benefit from all of its interventions.3
"Disparities also may have to do with preferences for care and a greater desire for life-sustaining treatments in the last months of life. Another barrier has to do with spirituality and spiritual beliefs that may be seen as conflicting with hospice approaches,"4 Dr. Johnson notes. But there also is a lack of trust in healthcare systems based on past injustices and ongoing disparities.
"What I want people to take away from my research is not only that beliefs and preferences for care differ by culture, but also that these barriers are not insurmountable," she says. "They don't apply to every individual. One size does not fit all for diverse groups. As healthcare providers, it's our obligation to make sure that our services are available to everyone who could benefit from them, even if we sometimes have to go the extra mile in order to overcome the barriers."
Issues of disparities are gaining importance with the growing diversity of the American population and of the potential consumers of hospice and palliative care. They're also integral to AAHPM's mission of advancing the delivery of quality hospice and palliative care, with ready and open access for anyone who could benefit from them.
Dr. Johnson sits on AAHPM's Diversity Advisory Group, which convened a World Café session for attendees at the AAHPM & HPNA Annual Assembly in March to talk about these issues and help identify priorities for the organization to pursue. Also focusing conference attendees' attention on this important subject was a session titled "Winning Strategies with Healthcare Disparities," by Bronwynne Evans, PhD RN, of the Arizona State University College of Nursing, cochair of the American Academy of Nursing's Expert Panel on Palliative and End-of-Life Care, and Katherine Flores, MD, director of the Latino Center for Medical Education and Research at the University of California–San Francisco in Fresno.
What Are Disparities in Health Care?
Disparities or inequities in healthcare delivery and diversity—both of the patients served and of the workforce—are two distinct concepts that often are discussed in tandem. Experts in the field also talk about cultural competency, or the effective and appropriate handling of patients from different cultures, and cultural congruence, or people of like languages and cultures serving patients who are like them.
Other issues that impact disparities include language differences and health literacy barriers, which may not be well-served by the reading level at which materials about hospice and palliative care are written. Even the core hospice and palliative care values of autonomy and individual rights can come in conflict with other cultural values emphasizing collective decision making or treating death as a taboo subject.
Cultural competence, writes Phyllis R. Coolen, DNP MN RN, "can be viewed as an ongoing journey of commitment and active engagement through the processes of cultural awareness, cultural knowledge, cultural skills, cultural collaboration, and cultural encounter."5 Coolen discusses the challenges clinicians face in discussing end-of-life care with patients and the discomfort when patients' cultural norms differ from providers'.
"Cultural sensitivity requires the physician to be aware of how culture shapes patients' values, beliefs, and world views, acknowledging that differences exist and respecting those differences,"6 note the authors of an article in Annals of Internal Medicine, whose work can be more broadly applied to all practitioners. "Attention to cultural differences enables the physician to provide comprehensive and compassionate palliative care at the end of life."
"There is not a lot of research specific to end-of-life care to help us put these issues together," Dr. Evans notes. Her recent article in Nursing Outlook reviews disparities in end-of-life and palliative care.7 An article by Reese and Beckwith8 presents the results of a survey of hospice professionals about cultural competence, identifying major barriers such as the lack of funding for staff to do outreach and the lack of professionals' knowledge about the diverse cultures in their community and about which cultural groups are not being served adequately.
Evidence from the National Hospice and Palliative Care Organization's annual Facts and Figures suggests that the gap in utilization of hospice and palliative care may be narrowing, but "despite increased utilization, racial differences continue to exist in the perceptions of the quality of care provided to patients who may benefit from palliative care and other support services," states Ramona Rhodes, MD MPH, of the University of Texas Southwestern, Dallas, in a paper published on the website of the American Public Health Association.9
What's the Link Between Disparities and Diversity?
"Disparities have to do with the care we provide—and the differences or biases inherent in that care," says Timothy E. Quill, MD FACP FAAHPM, director of the Palliative Care Program at the University of Rochester, NY, Medical Center and cochair of AAHPM's Diversity Advisory Group. "Diversity has to do with both sides of the stethoscope—both us and the care we provide and how we are the same as or different than the people we are trying to serve. Can we increase the knowledge of our own biases and what we can do to remedy them at a time when the people we want to care for are getting more and more diverse?"
"I look at these issues as two sides of the same coin," says Tammie Quest, MD, director of the Emory Palliative Care Center in Atlanta. "If you're not fostering a culture of diversity and inclusion, you'll miss important cultural perspectives that could help you solve certain problems in your work. One reason for focusing on disparities is that when you have greater diversity, there's more opportunity for an exchange of ideas, for reflection, and for self-awareness. You're more likely to recognize the disparities that exist and to think creatively about how to overcome them," she says.
"We should all care about it, because it affects the care we give to patients and families," Dr. Quest adds. "It affects our teamwork, our systems, and our ability to interact with our healthcare organizations and help people better understand what we do in palliative care. We, as professionals, are better able to engage and communicate with our internal and external stakeholders."
When you have greater diversity, there’s more opportunity for an exchange of ideas, for reflection, and for self-awareness. You’re more likely to recognize the disparities that exist and to think creatively about how to overcome them. -Tammie Quest, MD
What Can HPM Practitioners Do?
In her presentation at the AAHPM & HPNA Annual Assembly, Dr. Flores observed that practitioners in palliative care seem quite culturally competent, stating "you have to be to do this work." Still, disparities exist—members of some cultural groups are not receiving the same care as others. With looming shortages of healthcare professionals, especially nurses, these issues will become magnified. "A more diverse healthcare work force is an important strategy for dealing with diverse populations," Dr. Flores says. Some programs are trying to reach minority students earlier, recruit them into healthcare professions, and provide mentors.
"Engage with community outreach and education with the groups that are important in the community you want to serve," Dr. Johnson says. "Work with these groups to engage volunteers who look like the people you want to serve. Partner with the local faith communities to provide information and have a discussion of the issues and how to provide services appropriately."
Dr. Evans emphasizes cultural brokers, who can help health professionals connect with target patient populations; better understand them; and, in some cases, translate for them. "My cultural brokers are researchers trained to go out to work with families from their same cultural background, helping us to understand the nuance of what is being said," Dr. Evans says. The family members of non-English–speaking hospice and palliative care patients should not be put in the position of translating for them, she says. "They don't know the medical language, and they have other issues they need to deal with," she says, including issues of confidentiality and disclosure that can be abrogated if they have to do the translating.
"Take a look at your program, division, or department," Dr. Quill advises. "Talk within your group about the issues you collectively have, both internally and with patients. If you're part of a large organization, is there a diversity office? Talk to the diversity officer. What is happening in your organization at large?"
Five Simple Things You Can Do to Mitigate Health Disparities in Your Practice
|Created by VJ Periyakoil, MD, Stanford University School of Medicine for the National Culturally and Linguistically Appropriate Services Standards in Health and Health Care. Used with permission.|
Promoting Diversity for the Future
"When people feel different, for whatever reason—speaking or looking different, having different values—that brings self-awareness and self-consciousness. They tend to feel excluded," observes VJ Periyakoil, MD, professor of geriatrics, hospice, and palliative care at Stanford Medical Center in Stanford, CA. Disparities can come in many shapes and forms, including sexual orientation and gender identity (SOGI). "Sometimes minority and socioeconomic status travel together. Both are signifiers of what can become disparities. It's multifactorial," she adds.
Hospice and palliative professionals receive little if any training on caring for lesbian, gay, bisexual, and transgender (LGBT) patients, who continue to suffer exclusion and marginalization in their encounters with the larger healthcare system, says Sean O'Mahony, MB BCh BAO, hospice and palliative physician at Rush University Medical Center in Chicago, IL. Failing to identify SOGI at entry into the healthcare system renders this community invisible, causing disparities in access to care and health outcomes to go unmeasured. "Consequentially, surrogate decision making and visitation rights are not proactively offered to their family of choice," Dr. O'Mahony explains. "We should promote inclusion by promoting best practices for identification of SOGI and by offering cultural competence training for care of LGBT patients and families to our membership," he says.
Dr. O'Mahony also notes that younger LGBT professionals entering the field of hospice and palliative medicine have encountered an internalized homophobia in their professional, educational, and personal experience. "We must find ways to limit the impact of this on their professional growth and ability to contribute meaningfully to the field through mentorship and support," he says, adding that the Academy encouraged the development of an LGBT special interest group.
One important development that emerged from the World Café at the Annual Meeting, Dr. Periyakoil says, is recognition that there is not good demographic data on the members of the Academy, which makes it harder to talk about diversity and disparities in the field. "We all have stereotypes. Knowledge that these stereotypes exist is important because it allows us to take steps. The most important thing is to take the first step. The fact that the Academy is focused on this issue is a huge validation," she says.
The World Café drew about 50 people, who gathered for facilitated small-group discussions about prioritizing the steps the Academy must take in the short run to address these issues. "There was a clear consensus that we need to try to get a sense of who's actually in the Academy—who is represented—and what is the level of diversity," reports Dr. Quill. The advisory group and AAHPM staff will be working with a consultant to develop a strategic plan for addressing these issues, with opportunities for members to get involved and engaged with that plan.
Changing the face of the membership is a longer-term challenge, Dr. Quill says. "Making our existing members more receptive and knowledgeable about diversity and cultural differences is likely to be more achievable in the shorter term. Out of the discussion in San Diego emerged a wide range of interesting ideas. There are so many ideas—so many possibilities—but you have to start somewhere," he says. "We can look at this on a lot of levels, and it opens a lot of other doors. We're just starting the process and welcoming input from the members."
"How does the Academy engage and foster a culture of inclusion that better equips our members?" poses Dr. Quest. "We have the opportunity to be an organization that upholds inclusion and to increase our own cultural congruence by having the Academy model inclusive behaviors that celebrate diversity. We know we need to be more inclusive, but the spirit of diversity is inclusive of what the Academy is all about."
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- Johnson K, Sloane R, Kuchibhatla M, Galanos A, Tanis D, Tulsky J. Place of death among elderly hospice users: differences by race (Abstract). J Am Geriatr Soc. 2004;52(4):supplement:S190.
- Smith AK, Earle CC, McCarthy EP. Racial and ethnic differences in end-of-life care in fee-for-service Medicare beneficiaries with advanced cancer. J Am Geriatr Soc. 2009 Jan;57(1):153-158.
- Strand JJ, Kandar MM, Care EC. Top 10 things palliative care clinicians wished everyone knew about palliative care. Mayo Clin Proc. 2013 Aug;88(8):859-865.
- Johnson KS, Elbert-Avila KI, Tulsky JA. The influence of spiritual beliefs and practices on the treatment preferences of African Americans: a review of the literature. J Am Geriatr Soc. 2005;53(4):711-719.
- Coolen P. Cultural relevance in end-of-life care. EthnoMed website. http://ethnomed.org/clinical/end-of-life/cultural-relevance-in-end-of-life-care. Published May 10, 2012.
- Crawley LM, Marshall PA, Lo B, Koenig BA; End-of-Life Care Consensus Panel. Strategies for culturally effective end-of-life care. Ann Intern Med. 2002;136(9):673-679.
- Evans BC, Ume E. Psychosocial, cultural, and spiritual health disparities in end-of-life and palliative care: where we are and where we need to go. Nurs Outlook. 2012;60(6):370-375.
- Reese DJ, Beckwith SK. Organizational barriers to cultural competence in hospice [published online ahead of print March 12, 2014]. Am J Hosp Palliat Care. doi: 10.1177/1049909113520614
- Rhodes R. Diversity and aging: hospice and palliative care. Age & Public Health Section/SPIG Newsletter. Spring 2008. Retrieved from www.apha.org/membergroups/newsletters/sectionnewsletters/aph/spring08/Diversity+and+Aging+Hospice+and+Palliative+Care.htm.