Community Based Participatory Research (CBPR), a social justice method, involves a collaborative partnership between community members and academia, to find solutions to an unjust problem. It has been widely used in public health and proven to reduce health disparities. Our team has implemented CBPR principles to develop a culturally based: (1) Palliative care consult program, (2) Training program for clinicians caring for African Americans elders with serious illness, and (3) Goals of Care Conversation Guide based on African American cultural values.
In Part I of this article, we describe the egregious disparities that African American experience at end of life, and in Part II we illustrate how implementing CBPR methods can be used to develop palliative care programs, goals of care conversation guides, and training methods for clinicians, all of which are based on the cultural values of African Americans.
Part I: Health Disparities in Palliative Care
Palliative Care
Patients facing life-threatening illness often experience unnecessary and preventable suffering including extreme and prolonged pain, psychological distress and poor communication with healthcare professionals,Reference Morrison and Meier 1 resulting in tremendous strain on patients and caregivers.Reference Chochinov, Hassard, McClement, Hack, Kristjanson, Harlos, Sinclair and Murray 2 Unmet needs in the physical, psychosocial and spiritual domains are common. 3 As a result, the last few weeks and months of life, and that of their loved ones, may be additionally burdened with physical, emotional, and spiritual suffering. Palliative care programs, interdisciplinary care focused on relief of pain and other symptoms in support of best possible quality of life for patients with serious illness and their caregivers, has been shown to reduce distressing symptoms,Reference Bakitas, Lyons, Hegel, Balan, Barnett, Brokaw and Byock 4 alleviate suffering, improve doctor-patient communication and satisfaction with care,Reference Bakitas, Lyons, Hegel, Balan, Brokaw, Seville and Hull 5 improve caregiver satisfaction, and enhance the efficiency and effectiveness of hospital services,Reference O’Hara, Hull, Lyons, Bakitas, Hegel, Li and Ahles 6 as well as to be associated with hospital cost savings.Reference Penrod, Partha, Dellenbaugh, J. F. Burgess, Christiansen and Luhrs 7 Consultations by palliative care experts on patients in hospital, often results in successfully identified unrecognized symptoms and unmet problems,Reference Bailey, Amos, Burgio, Woodby, Williams, Redden, Kovac, Durham and Goode 8 and have been associated with lower use of intensive care units (ICUs),Reference Elsayem, Smith, Parmley, Palmer, Jenkins, Reddy and Bruera 9 lower likelihood of dying in ICU,Reference Norton, Hogan, Holloway, Temkin-Greener, Buckley and Quill 10 lower costs of care,Reference Penrod, Deb, Luhrs, Dellenbaugh, Zhu, Hochman, Maciejewski, Granieri and Morrison 11 and improvement in care processes, including opioid prescribing and documenting patient goals for care.Reference Higginson, Finlay, Goodwin, Cook, Hood, Edwards, Douglas and Norman 12
In Part I of this article, we describe the egregious disparities that African Americans experience at end of life, and in Part II we illustrate how implementing CBPR methods can be used to develop palliative care programs, goals of care conversation guides, and training methods for clinicians, all of which are based on the cultural values of African Americans.
Role of Culture in Serious Illness
Culture profoundly shapes how people make meaning of their illness, suffering and dying, and strongly influences their responses to diagnosis illness, and their preferences for treatment.Reference Kagawa-Singer and Blackhall 13 Consequently, consideration of culture needs to be an essential aspect of palliative care.Reference Mazanec, Daly and Townsend 14 A lack of acknowledgment and recognition of cultural differences may compromise care for minority patients. 15 The National Consensus Project 16 stresses the need to emphasize cultural aspects of care, especially during serious illness, the dying process, at time of death, and post-death. And yet, despite this, and regardless of the call for an urgent need for research that emphasizes cultural preferences of different groups, 17 to date our studyReference Elk, Emanuel, Hauser, Bakitas and Levkoff 18 is the first of its kind in palliative care. Historically and until today, palliative and end-of-life care has been rooted in White, middle class cultural and religious values,Reference Wicher and Meeker 19 with its very different frame of reference, value system and life experience compared with that of many African Americans.Reference Baker 20 Middle-class Whites, primarily belonging to an individualistic culture, emphasize individual choice, while African Americans, who belong to a collectivist culture (cultures that emphasize the needs and goals of the group), value group support, and family-cen-tered decision making. 21 Seventy-nine percent of African Americans are Christian, 22 and 83% of African Americans report absolute certainty in their belief in God (compared with 62% of whites). 23 Faith, spiritual beliefs, and the guidance of a spiritual leader, 24 as well as hopeReference Kennard 25 and belief in God’s healing powerReference Mansfield, Mitchell and King 26 are central to religious African Americans, especially in coping with illness and in making treatment decisions.Reference Johnson, Elbert‐Avila and Tulsky 27 Within this spiritual belief, life or death decision lies in the hands of God, and a miracle is always possible; therefore, the continuation of care, even that which healthcare professionals consider “aggressive care,” is considered life-preserving care. Is it any wonder that, despite its proven effectiveness, African Americans under-utilize palliative and hospice care?Reference LoPresti, Dement and Gold 28 This is also compounded by a history of slavery, racism, and medical experimentation and exploitation,Reference Colón and Lyke 29 with ongoing systemic racism in our healthcare systemsReference Pirtle 30 that has, justifiably, left a legacy of mistrust of the healthcare system in the African American community.Reference Freeman and Payne 31 Yet, instead of focusing on adapting palliative care practice to meet our African American patients’ cultural values, the field has primarily concentrated efforts on attempting to make African Americans accept palliative care and hospice as is. The same efforts to force acceptance has focused on urging African Americans to discuss Advance Care Planning and complete Advanced Care Directives outside of culturally appropriate norms.
Advance Care Directives and Advance Care Planning
Advance Care Planning (ACP) aims to help ensure that people receive medical care consistent with their values, goals, and preferences during serious and chronic illness.Reference Sudore, You, Hanson, Meier, Pantilat and Matlock 32 ACP is also an umbrella process under which various elements, such as Goals of Care conversations, and legal documents such as an Advance Directive, a living will, and a Power of Attorney reside. Goals of Care conversations are discussions about prognosis, treatment risks and benefits, and planning for intensity/type of care.Reference Lin, Smith, Feder, Bickell and Green 33 These tend to be reserved for people with serious illness or nearing end of life and are sometimes referred to as end-of -life conversations. Rates of providers conducting ACP conversations have increased 34 with the reimbursement from Centers for Medicare and Medicaid Services,Reference Tsai and Taylor 35 and Palliative Care and physicians in acute care settingReference Brinkman-Stoppelenburg, Rietjens and Heide 36 conduct the highest proportion of ACP discussions. Some studies indicate that patients who have participated in ACP or Goals of Care conversations are more likely to receive care that is less aggressive,Reference Wright, Zhang, Ray, Mack, Trice, Balboni and Mitchell 37 more in keeping with their goals,Reference Mack, Paulk, Viswanath and Prigerson 38 additional and earlier hospice care,Reference Zhang, Wright, Huskamp, Nilsson, Maciejewski, Earle, Block, Maciejewski and Prigerson 39 and to experience more satisfaction with care.Reference Detering, Hancock, Reade and Silvester 40 Advance Care Planning is also associated with reduced distressReference Mack, Cronin, Keating, Taback, Huskamp, Malin, Earle and Weeks 41 and depression, and higher quality of life at end of life for caregivers. 42 Despite the fervent national push towards obtaining Advance Directive documentation, now even more so due to COVID,Reference Rosenberg, Popp, Dizon, El-Jawahri and Spence 43 concerns about this process’s efficacy and benefit have been raised. Several studies have demonstrated the failure of Advance Directives alone to facilitate goal concordant care,Reference Fisch 44 indicating this may not be the magic bullet that it was espoused to be. In his recent editorial, MorrisonReference Morrison 45 claims our push toward Advance Directives have been a failure as the ideal envisioned, i.e., that patients’ stated wishes are honored by clinicians, is not the reality. 46
Consistent evidence suggests that African Americans are less likely to participate in ACP than White AmericansReference Narang, Wright and Nicholas 47 with substantially lower Advance Directive completion rates among African Americans.Reference Johnson 48 Several studies have examined the complex barriers to ACP completion among African Americans, yet gaps still remain in understanding these factors, as well as in finding culturally appropriate methods to improve ACP among African Americans.Reference Lovell and Yates 49 In a systematic review of studies focusing on barriers in the African American community to completing ACP,Reference Sanders, Robinson and Block 50 a combination of personal, interpersonal, and system-level factors, including the strong influence of the history of slavery and racism in the US, were found to have shaped the beliefs and attitudes of African Americans about end-of-life planning, which in turn influence completion of Advance Care Directives. African Americans are more likely to pursue informal planning than to document their care preferences formally. The widespread perceptions among African Americans that communication with the medical team is often poor, and the impact of family and clinician actions on end-of-life outcomes,Reference Obermeyer, Powers, Makar, Keating and Cutler 51 led Sanders et al. (2016) to recommend that future research focus on theory-driven approaches to engage faith and family in ACP and Goals of Care discussions to improve receipt of goal-concordant care meaningfully. 52 The need to develop culturally sensitive, tailored approaches to ACP has been emphasized by both the Institute of Medicine Report on Dying 53 and the National Consensus Project. 54
Disparities in End-of-Life Care of African Americans
One of the most egregious realities is the finding that even when African Americans have their preferences for end-of-life care recorded in their medical charts, they are less likely than whites to have their preferences followed. 55 Additionally, clinicians are less likely to document Goals of Care discussions with African American (and Hispanic) patients and families,Reference Chuang, Hope, Allyn, Szalkiewicz, Gary and Gong 56 an indication of unconscious bias or perhaps even overtracism.
There is yet another harsh reality in end-of-life care for African Americans. In addition to the belief in hope and miracles described earlier, studies have found that African Americans preferred more life-sus-taining measures than whites. 57 This includes ventilator support, ICU nasogastric tube feeding, and ICU admissions. Yet emphasis is placed by medical providers on the “aggressiveness” of such care (since physiologically, the person is not likely to return to health) and the healthcare system’s cost. Healthcare providers practice within their own culture,Reference Griggs 58 and often disregard or dismiss the strong belief in hope and a miracle that is integral to 80% of African Americans, and such families are often labeled as “being in denial.” Instead of considering such care as life-preserving until a miracle occurs or God decides the loved one’s fate, family members are often encouraged by healthcare providers to cease such care, which is considered “aggressive” and costly. These conversations usually occur with clinicians who are not palliative care trained and could potentially leave the family wondering if the medical system doesn’t want a positive outcome for their loved ones. Families of all ethnicities and cultures want their loved ones to die in the way that fits with the goals of the patient and family, a term labeled “goal-concor-dant care.” When African American families continue to argue for their loved one’s right to receive such care, they are labeled as “difficult,”Reference Howell 59 and the care their loved one receives is often not concordant with their cultural values and beliefs. This is evidenced in the consistent rating of quality of care more poorly by African American family members than white family members. Bereaved African American family members also often report regret about their decisions for end-of-life care for their loved ones.Reference Chuang 60 Goal-concordant care is considered high-quality care and is based on good communication between the clinician and patient and family. Failure to achieve this is considered a medical error.Reference Sanders, Curtis and Tulsky 61 Yet until an important paper by Sanders et al., 2018, consensus was not reached on how to measure clinician communication, goal concordant care, or caregiver assessments of goal concordance. 62
Further disparities in palliative and end-of-life care have been widely observed, 63 including in the management of pain and symptoms. 64 At least two review articles highlighting inequalities have been conducted. Both concluded that pain and symptom research is in its early stages, lacking methodological and theoretical consistency, which focuses on the description of disparities and not on strategies and interventions to address health equity.Reference Gardner, Doherty, Bates, Koplow and Johnson 65
Part II. A Path Towards Health Equity Using Community Based Participatory Research
Community Based Participatory Research
Community Based Participatory Research (CBPR) is a form of action research, a process of action by a community to solve a significant problem that includes identification, strategy development, implementation (action), and then evaluation of the outcome.Reference Ivankova, Johnson, Hitchcock and Onwuegbuzie 66 CBPR is based on a collaborative partnership between community members and academia as a way to finding a solution to an unjust problemReference Devia, Baker, Sanchez-Youngman, Barnidge, Golub, Motton, Muhammad, Ruddock, Vicuña and Wallerstein 67 that affects the community. The aim is to combine community input with action and thus achieve social change to achieve health equity. CBPR is a widely used public health and preventive method approach that repeatedly has been proven to reduce health disparitiesReference Wallerstein, Giatti, Bógus, Akerman, Jacobi, Toledo and Mendes 68 and results in demonstrable positive health outcomes.Reference Wallerstein and Duran 69 CBPR is seen as a social justice method because at its core; it is a power-sharing partnership with the community. 70 This method builds on the strength of the community, and the community owns the process: community members are involved in all aspects of decision-making, knowledge generation, and the dissemination of findings, and it is the responsibility of the researchers to provide ongoing feedback on study steps and outcomes to the community. Yet CBPR has not been used much in medicine in the US, primarily due to two reasons. First, a tension has been reported between a dominant scientific paradigm that considers academics’ expertise to be most important versus an egalitarian CBPR paradigm. 71 Second, dominant scientific standard considers randomized controlled trials (RCT) as the gold standard for testing efficacy of clinical and community intervention. Yet RCT has overlooked the concept of external validity, which includes the need to involve community members in designing and implementing research that is appropriate for their diverse populations and settings. 72
Despite it not being used as a tool to improve medical care, CBPR has been recommended as a promising strategy for palliative care research, as it aligns with stakeholders’ priorities as a means to deliver community appropriate care to underserved communities. 73 In this next section, we illustrate how implementing CBPR methods can be used to develop: (1) Culturally based palliative care programs, (2) Training programs for palliative care clinicians in caring for African Americans with a serious illness and their family in a culturally appropriate way. (3) A community-based solution to a persistent problem in palliative care, the lack of a culturally based goals of care conversation guide. Each is discussed in turn.
(1) Implementing cbpr principles to develop a culturally based palliative care consult program
The purpose of this study was to use CBPR methods to develop a culturally based palliative care consult program in partnership with rural, southern, African Americans and white elders with serious illness, and to assess the feasibility of its implementation at a local hospital. The study was conducted over three phases in Beaufort, South Carolina (January 2013-February 2016). 74 We formed a partnership with a Community Advisory Board comprised of equal numbers of white and African American members, and they guided the study throughout. Phase 1: Cultural values and preferences were determined through ethnic/racial-based focus groups comprising family members who had cared for a loved one who had died in the past year. A thematic analysis of each focus group transcript focused on cultural values and lived experiences. Themes between white and African Americans were found to be either (a) Equivalent, e.g., disrespectful treatment by patients and family by hospital physicians in the past, (b) Similar but with variation, e.g., although religion and church were important in both group, and pastors in both groups helped family members when the patient was at end of life, African Americans considered the church unreservedly central to every aspect of life, or (c) Divergent, e.g., African Americans strongly believed that hope and miracles were always a possibility and that God was the decider, (a theme not present in the White group), as well as a strong distrust of healthcare systems and physicians. In Phase 2, the Community Advisory Board (which had expanded to include several focus group members from each ethnic/racial group), the researchers, a palliative care physician, and two hospital staff worked together to create the culturally based consult program. The researchers facilitated the process; the palliative care physician explained the National Consensus Project for Palliative Care guidelines for a palliative care consult. With this knowledge, the Community Advisory Board members proposed culturally appropriate programmatic recommendations for their specific ethnic/racial group, and the hospital staff ensured these were feasible to be implemented in the local hospital. The culturally based recommendations were then written into two protocols, one for African Americans and the other for white patients, and then linked with the National Consensus Project guidelines. Differences between racial/ethnic group protocol 75 included: the way the palliative care physician was to greet and form a relationship with the patient and family, prognosis discussions (e.g., bringing God into the sharing of prognosis with African Americans), recognition and respect of hope and miracles in the African American community, and acknowledgment that African Americans take care of their loved ones themselves. Phase 3: The palliative care physician implemented these culturally based protocols through telehealth in the local hospital. Enrolled patients were African American or White patients over 65 with a life-limiting illness who had a caregiver referred by hospitalists. This protocol was found to be feasible to implement, although low referral by hospitalists was an obstacle. Caregivers were satisfied or very satisfied with the culturally based consult. This is the first culturally based palliative care intervention ever developed. This intervention’s efficacy is now being tested in a randomized control trialReference Watts, Gazaway, Malone, Elk, Tucker, McCammon and Goldhagen 76 in hospitals in three ruralSouthern states (AL, MI, SC), each of which have their own Community Advisory Board, who are involved in the study. Four palliative care physicians who will be implementing this culturally based consult for telehealth were trained in these by the original Community Advisory Board members in a two-day culturaimmersion and training in Beaufort, SC.Reference Gainer 77 Although this study’s findings can only be generalizable to rural, southern older populations, this work serves as a model that can be replicated with other underserved or underrepresented communities. For example, the formation of a Community Advisory Group and the implementation of focus groups to determine the cultural values and lived experiences of other minority communities have been replicated in several different communities, including family members of older: (a) Ghanaians with serious illness in Kumasi Ghana,Reference Agbeko, Owusu, Tate and Elk 78 (b) Puerto Rico population with older loved ones with serious illness in San Juan, Puerto Rico,Reference Viera 79 and (c) in 2021, a similar study will be implemented with family members of older Hindu patients with a serious illness in the US.Reference Patel80
By developing and implementing culturally concordant palliative care programs, training clinicians in culturally based care, and developing culturally based solutions to unacceptable problems such as lack of culturally based goal-concordant care at end of life, the likelihood increases of clinicians: (a) Gaining an in-depth understanding of, and therefore respecting the cultural values and lived experiences of African American patients with serious illness, (b) Changing their practice so that the cultural values of African American patients and their families are respected and valued.
(2) Implementing cbpr principles to develop a culturally based training model for clinicians caring for rural, southern african americans
This study aimed to partner with African American community members to develop a culturally based training program for clinicians who care for seriously ill rural, southern, African American elders. Focus groups were held with African American family members caring for a loved one with a serious illness, and with pastors, community leaders integral to their constituents’ health and well-being.Reference Payne 81 Several themes from the focus group thematic analysis were prioritized by the community members, and the group chose videos as a method to convey their messages and several videos were filmed. We developed an adult-based learning training program to accompany these videos. This is the first clinician training program in palliative care built on the African American community’s explicit direction. Ninety palliative care clinicians have completed the training. Data collection is ongoing, and an article describing this study is in preparation.Reference Elk, Gazaway, Barnett and Thompson 82 These trainings can only be generalized to rural, southern, African Americans. Importantly, however, they serve as a model that can be replicated with other minority or underserved groups.
(3) Implementing cbpr principles to develop a culturally concordant goals of care conversation guide
African American family members consistently rate quality of care for their loved as poor and report lack of goal-concordant care. Goal-concordant care is achieved through effective communication between patients and families and clinicians. There are no culturally based Goals of Care Conversation Guides. We have partnered with African Americans to create a culturally based Goals of Care Conversation Guide that meets African Americans’ cultural values and lived experiences. Palliative care clinician input will be sought to enhance feasibility of implementation. The first phase of this study was launched in October 2020 and an article will be written once completed.
Conclusion
A Four-Step Model to Create and Implement Culturally Concordant and Socially Justice Focused Palliative Care Programs
In Part II of this paper, we have demonstrated a four-step model (Figure 1.) that can be used as a template to develop culturally concordant palliative care programs, train clinicians, and develop culturally based solutions to unacceptable inequities across a wide variety of communities. Each of the studies described illustrates the incomparable worth of partnering with underserved communities, establishing and building trust, and together building solutions to problems that have resulted in unconscionable injustices in the healthcare system towards African Americans with serious illness and their families. By developing and implementing culturally concordant palliative care programs, training clinicians in culturally based care, and developing culturally based solutions to unacceptable problems such as lack of culturally based goal-concordant care at end of life, the likelihood increaseof clinicians: (a) Gaining an in-depth understanding of, and therefore respecting the cultural values and lived experiences of African American patients with serious illness, (b) Changing their practice so that the cultural values of African American patients and theifamilies are respected and valued. In turn, this has the potential to enhance African American patients and families’ satisfaction with palliative care received from culturally trained clinicians. Receipt of goal concordant care by African Americans with a serious illness has the potential to increase satisfaction with end-of-life care and in time, by having their values respected, to increase trust in a healthcare system that has for so long allowed inexusable healthcare disparities to continue. Imagine such a change across healthcare settings across the US, changes that not only reduce the currently abysmal healthcare disparities but changes that over time result in health equity for African Americans with serious illness and their families.
Creating and Implementing Culturally-Based Social Justice-focused programs in 4 steps
Note
Dr. Elk is currently funded by the National Institute of Nursing Research of the National Institutes of Health (Award Number R01NR017181). A diversity supplement funds Dr. Gazaway to the award mentioned above (Award Number R01NR011781-03S1).
