Introduction
The National Academy of Medicine recognizes advance care planning (ACP) as a key facilitator of high-quality end-of life (EOL) care (Institute of Medicine, 2015). ACP encompasses a broad range of activities, from identification of surrogate decision-makers to articulation of EOL care preferences (Sudore et al., Reference Sudore2017). Certain ACP activities (e.g., surrogate appointment) are relevant at all stages of health. However, ACP's greatest impact may be for the seriously ill (Billings & Bernacki, Reference Billings and Bernacki2014), for whom evidence demonstrates improved healthcare outcomes: patients are more likely to receive care consistent with their preferences, enroll in hospice, and report greater care satisfaction (Detering et al., Reference Detering2010; Mack et al., Reference Mack2010b; Wright et al., Reference Wright2008). Bereaved families have reduced distress and decisional conflict and higher quality of life (Chiarchiaro et al., Reference Chiarchiaro2015; Detering et al., Reference Detering2010).
African Americans participate less in ACP than white Americans (Gerst & Burr, Reference Gerst and Burr2008). This may contribute to disparities in EOL care, such as lower use of hospice and palliative care (Carrion et al., Reference Carrion, Park and Lee2012; Hanchate et al., Reference Hanchate2009; Johnson et al., Reference Johnson2008a, Reference Johnson2010; Loggers et al., Reference Loggers2009; Mack et al., Reference Mack2010a) Factors influencing ACP in African Americans are multidimensional and interrelated. Patient factors, such as religion and spirituality (R/S), interpersonal relationships, mistrust, and sociodemographics, interact with clinician and healthcare system factors to facilitate or impede ACP (Sanders et al., Reference Sanders, Robinson and Block2016). Significant gaps remain in our understanding about how these factors and their interactions affect ACP among seriously ill African Americans. We conducted a qualitative study with multiple stakeholder groups, including seriously ill persons and their caregivers, to examine and compare perspectives on ACP among African Americans.
Methods
Overview
As part of a larger study to assess acceptability of a tool to assist clinicians in conducting ACP discussions, we conducted a series of interviews and focus groups with (1) disparities experts (researchers and a palliative care clinician) with experience studying and/or caring for seriously ill African Americans (experts); (2) community-dwelling African Americans (community); and (3) seriously ill African Americans and their caregivers (patient-caregiver). Informed by social ecological theory, we used group interviews to qualitatively explore systems, community (interpersonal), and patient and caregiver (intrapersonal) perspectives, respectively, on barriers and facilitators to ACP (Crabtree & Miller, Reference Crabtree and Miller1992). We conducted a focus group, small discussion groups, and a joint interview given participant time and interviewer resource constraints (Polak & Green, Reference Polak and Green2016).
Recruitment
Institutional review boards at the Medical University of South Carolina (MUSC) in Charleston, SC, and the Dana-Farber Cancer Institute in Boston, MA, approved this study. For the “expert” groups, we recruited MUSC academic and medical professionals to participate in one of two small discussion groups. To represent community perspectives, we invited a convenience sample of African American church members who meet regularly to discuss health-related issues to participate in a single focus group. For the patient-caregiver group, we used electronic health records to identify and recruit from MUSC specialty clinics African American patients with stage IV cancer, New York Heart Association class III/IV heart failure, or chronic obstructive pulmonary disease with more than three hospitalizations. Patients and their named caregivers were invited to participate in one of two in-person focus groups at MUSC. Refreshments and a $25 gift card were provided to groups 2 and 3.
Data collection
We developed a structured interview guide reflecting a social ecological model, which posits that individual behavior is shaped by intrapersonal, interpersonal, and societal factors (McLeroy et al., Reference McLeroy1988). We used a literature review to inform guide development, with different versions for each group (researcher/clinician, community, patient/caregiver). Medical literature alone may be insufficient to understand expert opinion because researchers and clinicians also derive knowledge from personal experiences. Therefore, we asked experts with research or clinical expertise in the academic community to comment on systemic and local factors that informed their perspectives on ACP among African Americans. We incorporated a church-based group of community participants because of clear evidence of the role of R/S in shaping EOL care for African Americans (Balboni et al., Reference Balboni2007; Johnson et al., Reference Johnson, Kuchibhatla and Tulsky2008b; Sanders et al., Reference Sanders, Robinson and Block2016). Church members and patients-caregivers were asked to share their own experiences communicating with clinicians about goals and preferences for EOL care, to reflect on their priorities about EOL planning, and to consider barriers to and enablers of ACP.
All focus groups and interviews were audiorecorded, lasted 45–90 minutes, and were cofacilitated by team members experienced in moderating focus groups (JS and KS). Participants completed a demographic survey after sessions. Moderators collected narrative process notes to document observed interactions and conversation subtext.
Data analysis
Interviews were transcribed verbatim for content analysis. We employed template analysis, which uses both inductive and deductive approaches, to facilitate coding and theme identification (Crabtree & Miller, Reference Crabtree and Miller1992): we developed a preliminary code framework drawn from the literature (deductive), which we augmented in an iterative fashion with themes derived directly from focus groups (inductive).
Our initial coding template was organized, in accordance with our interview guide, to reflect anticipated barriers to and facilitators of ACP derived from the literature in a structure that reflected intrapersonal, interpersonal and systems levels. Using this template, two authors (JS and KS) independently coded transcribed data and reconciled differences by consensus. We refined evolving codebooks as data analysis proceeded by collapsing overlapping and unused themes.
As highlighted in Figure 1, in addition to our seven a priori codes, 12 additional codes emerged in data analysis and contributed to a final set of seven themes capturing participants’ descriptions of ACP barriers and facilitators. After coding data from each group, we combined all data in a final codebook to identify group consistencies and differences. JS and KS compared process notes following groups to further contextualize findings.
Fig. 1. Predefined and emergent codes and subsequent themes.
Results
Participant demographics
The “expert” group (n = 5) comprised four disparities researchers (two African American) and a palliative care clinician. The “community” group consisted of nine African American community church members (mean age, 50; range, 25–66), eight of whom were female and had experience as a caregiver, and seven with at least some college education. The patient-caregiver group consisted of 11 participants, seven with serious illness and four caregivers (mean age, 58.5; range, 49–73). Four participants were college graduates, three had completed some college, three had a high school education, and one had not completed high school. Two participants rated their health as “poor,” six as “fair,” and three as “good” or “very good.”
Thematic findings: from barriers to assets
Participants described several key factors that shape participation in ACP. They highlighted the role of R/S, mistrust, family, and patient-clinician relationships, and identified beliefs and preferences regarding prognostic communication and care preferences that influence ACP. However, perspectives on how these factors impede or enable ACP among seriously ill African Americans differed by group. Next we describe themes and highlight similarities and discrepancies by group, presenting illustrative quotations in Table 1. Overall, findings fit a pattern in which factors traditionally identified as barriers in the literature were seen as assets, particularly by patient-caregivers.
Table 1. From barriers to assets: quotations illustrating variation by group in common themes around ACP among African Americans
* In reporting participant quotations, ellipses are used to minimize superfluous speech and enhance clarity of meaning.
† P and F in ID# reflect status as patient or family caregiver.
MOLST, Medical Orders for Life-Sustaining Treatment.
Context: rarity of ACP
One finding from interview notes contextualize the results described here: participants’ clinical, family, and personal experiences reflected a culture in which African Americans rarely participate in ACP. Perceptions about barriers and facilitators to ACP, including among experts, often reflected communication challenges experienced in the last days of life (e.g., in the hospital), which timely ACP might help overcome. Expert participants, in particular, were sensitive to this issue. As one said, “This has got to happen before a person experiences the major issues of needing palliative or EOL care” (group 1, #2).
Religion and spirituality
Participants described ways in which R/S help patients make sense of disease and its trajectory, and thus indirectly influence ACP. Experts stressed the potential for R/S to impede ACP. They agreed that the common patient and family belief in God's control over prognosis fostered a sense of fatalism that precludes ACP: “Trusting that God has that in his control…pushes them to let go of care decisions” (group 1, #5).
Some community members echoed this sentiment, noting of Christians: “we feel like…if we get sick God will heal us and we'll all live forever,” and are thus “the worst people to prepare for what's to come” (group 2, #7). This was accompanied by a nuanced understanding of divine healing: that death itself could represent divine healing, as when one described the death of her uncle: “God said, ‘I told you that I was going to heal him. I never told you I was healing him for this side of the earth’” (group 2, #1).
Patient-caregiver participants agreed that, as one said, “the Man up there is the one who determines everything,” (group 3, #P6) including prognosis, and that God's ability to heal supersedes that of physicians. However, in contrast to expert participants’ framing of R/S as a potential barrier to ACP, they focused predominantly on positive aspects of R/S in supporting coping, by providing “strength.” This was coupled with an acceptance that, as one said, “when the Lord is ready for you, They are ready for you” (group 3, #P3).
Mistrust and trust
Participants cited historical events and personal experiences within the healthcare system that perpetuated impressions about inadequate care for African Americans. Expert participants cited historical examples of trust violations by clinicians and healthcare systems. One noted that “Talking about EOL is not a priority; getting healthcare is” (group 1, #4), suggesting that any discussion of care limitations might be overshadowed by perceptions that care is being unfairly withheld. Similarly, community and patient-caregiver participants cited memorable negative experiences with clinicians as evidence that African Americans receive lower quality healthcare across the spectrum of illness and sometimes highlighted these as obstacles to productive health interactions. As one noted, “half the time we don't know if what they're telling us is the truth or not… We're going by what they tell us, but then we see something else” (group 2, #1).
Expert participants viewed mistrust as an unmitigated barrier to ACP, limiting the acceptability of discussing prognosis, for instance. By contrast, community and patient-caregiver participants were more likely to emphasize the positive impact of trusting relationships on discussion of prognosis and treatment recommendations, an integral part of ACP. They also described interactions with trusted physicians that eased acceptance of prognosis and preparation for loss. For example, one church member described an experience with her mother, in which a trusted family doctor helped the family prepare by stating directly that she was dying. All patient-caregiver participants described trust in current clinicians.
Patient-clinician relationships
Participants highlighted the importance of rapport with clinicians involved in EOL planning and respect demonstrated through kind, direct communication, and equal regard for African American lives. Rapport and respect might facilitate ACP by enhancing trust, whereas their absence reinforced ACP barriers.
Expert participants emphasized societal aversion to discussing death, whereas community and patient-caregiver participants focused more on their own patient-clinician experiences. Community members had experienced poor communication (e.g., victim-blaming for health problems and discourteousness) and felt that this both conveyed disrespect and impeded openness to future communication. Patient-caregiver participants also commented on positive effects of good communication. As one caregiver noted: “the doctors have been very pleasant. … They not only ask about [patient's] health. They want to know how I am…and how everybody doing at home…And that's good when you have that relationship with the doctor because it does make it easier” (group 3, #F4).
Family and decision-making
Participants uniformly validated the importance of family to ACP. Expert participants strongly emphasized the breadth of family—“it's not just sons and daughters; it can be brothers, sisters, aunts, uncles” (group 1, #2)—the importance of family decision-making and how this challenges ACP processes focused on autonomous decision-making. These participants also highlighted clinician training gaps in communication and cultural competency that leave them unprepared to engage multiple decision-makers.
Without deemphasizing practical aspects of family decision-making, community and patient-caregiver participants added that excluding family from decision-making—“Some people don't want their family to know” (group 2, #8)—was a way to both minimize burden for surrogates and protect themselves from family disagreement about limiting care. Family members’ experiences of personal loss and conflict made them more receptive to participating independently in ACP: “…this is good that you're going to write out different things that you want your loved ones to do before you pass, because sometimes when family pass you have so much arguments and stuff over things. So lots of time that have to be taken care of before an individual dies” (group 2, #5).
Communicating poor prognosis
Participants differed by group in their perceptions about how willing African Americans are to engage in discussions that include disclosure of poor prognosis. Expert participants highlighted “superstition” related to potential negative consequences of discussing dying. “Fundamentally, there may be a concern that bringing up the issue of EOL care is kind of ‘speaking it’ and that's something that will happen to the person” (group 1, #1). As a result, one expert said: “Don't ever give a timeframe. … I err on the side of just giving a generalization (because) we don't know and we're not God. Me saying a timeframe breaks down trust and I'm not honoring their view of God and his power” (group 1, #4).
In considering prognostic communication as a part of ACP, community participants described the potential impact of such “negative talk,” which might cause a frail person to “give up.” For example, one participant stated: “Lots of times people don't want to die, but when you speak with negative talk around people when they are on a sick bed and they see you – you're crying like you don't have no faith for them” (group 2, #5). Patient-caregiver participants, by contrast, did not equate ACP or prognostic discussion with negative thinking. There was agreement among participants when one caregiver noted:
I appreciate a doctor being candid. … you can't make an informed decision if you haven't been informed…. We were very fortunate to have one of the residents that came in there and, then Doctor X, they were so wonderful that we didn't go out. We left feeling positive, very positive and knowing what stages, you know, what this journey's gonna be like (group 3, #F3).
Care preferences
Participants’ descriptions of care preferences, along a spectrum from comfort- to cure-focused care, and their impact on ACP varied between groups. Expert participants emphasized a culturally normative desire for aggressive care among African American, obviating ACP unless they wished to limit treatment. As one noted: “People will not accept a recommendation to stop treatment at the EOL…” (group 1, #5). Community and patient-caregiver participants, by contrast, suggested that concerns about quality of life drove care preferences. Definitions of quality varied. One community participant said, referring to intensive EOL therapies: “there are some things I do not want” (group 2, #1); another commented in response that “if I ain't got nothin’ but a head, then let me live” (group 2, #7). Participants described a difficult balance between a desire to fight and awareness of risks of invasive care. As one noted:
And I wouldn't go through (life-sustaining) measures. I told my mother I wouldn't, no matter what if the one treatment didn't work, I refuse to keep going on. I wanna have a good quality of life. Not longevity. I don't consider the longevity if I'm always in the hospital. They stare at me like a pin cushion and I gotta get this test and that test and nothing's working. …. I'm done. My faith is what's going to get me through. So, that's what I'm counting on. (group 3, #P4)
Preparation and control
Community and patient-caregiver (but not expert) participants emphasized preparation and control as ACP motivations. They valued EOL preparation and associated it with a personal sense of peace and peaceful death in family members. One described ambivalence about completing a living will: “I was really frightened about doing that, but I went and did that will and after I did [it] I felt so good” (group 2, #7). Another patient described not feeling prepared to complete an advance directive, despite awareness of terminal prognosis, ultimately ceding control to his daughter:
He explained it to me as what it was…and I was comfortable. I just did not – I didn't feel that I was ready to sign for it. … It was more like an advanced directive-type…my daughter: she is mostly in charge of when I'm sick that I can't answer it, you know, I get – I have permission in my chart for them to ask her. But I just…not really legalized it paper-wise. I was just not ready for that yet. (group 3, #P4)
Discussion
This study was designed to elicit multiple perspectives on ACP processes among African Americans, from those with a broad systems outlook to those for whom ACP is a proximate concern. It is the first to examine and compare barriers and facilitators to ACP from multiple perspectives. We anticipated different viewpoints. Although the identified influences on ACP echo those described in existing literature (Sanders et al., Reference Sanders, Robinson and Block2016), our data highlight divergent perspectives of experts with those of community members and seriously ill patients and caregivers. Although our methods limit generalizability, patients, caregivers, and some community members described attitudes and behaviors that defy or complicate stereotypes endorsed by experts and evident in the literature about ACP barriers. This suggests opportunities for alignment of practices to meet patient and family preferences in ways that enhance completion and impact of ACP.
Expert participants highlighted R/S as a barrier to ACP, because faith in God's control over the timing and circumstances of death obviates EOL planning. By contrast, patient and caregiver participants emphasized the strength derived from R/S. Although participants did not directly associate R/S with ACP, when taken with an expansive definition of religious healing described by community participants, which includes death itself, our data suggest that R/S need not necessarily impede ACP. Existing literature also suggests this possibility with work highlighting that efforts to engage clergy in ACP suggests that R/S communities may add value to ACP improvement efforts (Bullock, Reference Bullock2006; Medvene et al., Reference Medvene2003). Additionally, although one study of advanced cancer patients demonstrated that patients who receive a high degree of spiritual support from religious communities are more likely to undergo more intensive EOL interventions, those who received spiritual support from medical teams were less likely to do so (Balboni et al., Reference Balboni2013).
Many presume that agreement to withhold life-sustaining treatments is the predetermined outcome of ACP. Therefore, logic holds that mistrust born of historically valid concerns about withholding treatment might limit ACP acceptability. Whereas expert and community participants emphasized the role of mistrust as a barrier to ACP and unwillingness to engage in prognostic communication because of mistrust or superstition, patient-caregiver participants described trusting relationships with clinicians that enabled discussion about sensitive issues, including prognosis. The nature of serious illness, and the frequency and intensity of relationships with clinicians, may foster trust in ways that more ad hoc engagements with the healthcare system undermine.
Participants uniformly validated the importance of family in ACP. However, where experts emphasized the presence of multiple decision makers in African American families as a barrier to ACP, community and patient-caregiver participants described the importance of independent decision-making in advance that could either protect family from decision-making, or protect themselves from family decisions that controvert their preferences. Evidence supports the viability of ACP in family-centric communities from other cultures (Tay et al., Reference Tay2017).
Patient-clinician relationships have a profound impact on illness and can enable ACP when characterized by rapport and respectful communication. Although long-standing relationships enabled rapport, participants felt that open-ended elicitation of goals and values and clinician kindness demonstrated respect.
These findings augment existing literature on ACP among African Americans. It is not the first study to demonstrate a lack of familiarity with ACP in the African American community (Daaleman et al., Reference Daaleman2008; Nath et al., Reference Nath2008). A recent systematic review modeled complex interactions between factors along a historical continuum of discrimination in ways that directly impact African American's ACP preferences (Sanders et al., Reference Sanders, Robinson and Block2016). Consistent with studies of older adults or patients with poor health or serious illness (Bullock, Reference Bullock2006; Carr, Reference Carr2011; Ford et al., Reference Ford2010; Johnson et al., Reference Johnson, Kuchibhatla and Tulsky2008b; Loggers et al., Reference Loggers2009; Smith et al., Reference Smith, Davis and Krakauer2007), our results suggest that R/S shapes perceptions about control, the meaning of healing, and coping, and subsequently influences ACP. Likewise, our results complement other studies examining the role of interpersonal relationships (Braun et al., Reference Braun2008; Dupree, Reference Dupree2000; Hauser et al., Reference Hauser1997; Hwang et al., Reference Hwang2003; Mack et al., Reference Mack2010a; Rhodes et al., Reference Rhodes2015; Smith et al., Reference Smith, Davis and Krakauer2007; Volandes et al., Reference Volandes2007; Wenger et al., Reference Wenger2001; Williams et al., Reference Williams2008; Zapka et al., Reference Zapka2006) and highlight both positive and negative influences on decision-making. Where some qualitative studies have highlighted the theme that “death is not an option” (Waters, Reference Waters2001), our community-based and seriously ill patients and caregivers suggested a more realistic approach. Although other studies highlight the impact of mistrust on ACP (Sanders et al., Reference Sanders, Robinson and Block2016), our findings suggest that the sole focus on mistrust as a defining characteristic likely oversimplifies the relationship that African Americans have with the healthcare system. This and other studies suggest the possibility that clinician-patient relationships provide the greatest influence on ACP for African Americans (Narasimhan et al., Reference Narasimhan2014).
What are the potential implications of our findings? African Americans have a diversity of preferences. Seriously ill African Americans may have preferences regarding ACP that differ from those commonly highlighted in the medical literature. Such evidence risks being used to teach cultural competence, when in fact it may undermine it by inadvertently and inappropriately discouraging some clinicians from initiating ACP or disclosing prognosis to African Americans. Second, our findings suggest the need for an approach to improving ACP that emphasizes high-quality communication between clinicians and patients. The history of African Americans in the United States is characterized by systematic marginalization by healthcare and other institutions (Tucker, Reference Tucker1994). Religion and family have developed unique importance to African Americans in response to their unique history (Ruggles, Reference Ruggles1994; Sobel, Reference Sobel1979). The current study highlights that religion and family should also be seen as assets that can be engaged by healthcare systems and clinicians to enable and enhance ACP.
How might this be achieved? Our findings reinforce others’ suggestion that ACP and prognostic disclosure should be offered to those with serious illness (Ahalt et al., Reference Ahalt2012; Smith et al., Reference Smith, Williams and Lo2011). This research raises the possibility that specific communication practices may lead to improved ACP with African Americans with serious illness, including enquiry about R/S beliefs and how they inform patients’ illness understanding, acknowledgment of patients’ and family's difficult experiences in the healthcare system, respectful exploration of individual goals and values, and exploration about the desired role of family in ACP (Kagawa-Singer & Blackhall, Reference Kagawa-Singer and Blackhall2001). Exploring these beliefs, experiences, and goals demonstrates respect for patients and families and builds rapport by helping them feel known.
This study has limitations. We engaged a small sample in one southeastern US city. The number of participants and interviews likely preclude data saturation and present the possibility that themes are over- or underrepresented (or absent), and that comparisons are over- or understated. However, the themes highlighted by participants and patterns across groups align with what is historically known about African American engagement with healthcare and challenge common perceptions in ways that carry face validity. There is the potential for selection bias and response bias among participants providing feedback to race-discordant facilitators; the presence of eight women of nine church-member participants means that we may have missed additional male perspectives; and caregivers and patients may not have felt able to express themselves honestly in each other's presence. However, whereas previous qualitative studies are limited by nonrepresentative groups (young or healthy adults) (Sanders et al., Reference Sanders, Robinson and Block2016), we included participants from key stakeholder groups identified by applying current (socioecological) theories regarding health disparities among African Americans. Also, evidence suggests the potential benefit of eliciting the shared perspective of patients and caregivers (Morgan et al., Reference Morgan2013). We used multiple analysts with different academic backgrounds to address potential evaluative invalidity related to a subjective analytical process. Nonetheless, these findings require further exploration and testing in future research. Finally, despite our attempt to clearly frame the discussions about ACP, lack of familiarity with ACP meant that participants may have referenced other types of clinician-patient communication when commenting.
In conclusion, African Americans in our sample appear willing to discuss prognosis and comfort-focused treatment, expect to do so with trusted clinicians, and prefer to determine family engagement in decision-making based on their perceptions of personal and family needs. Clinicians must avoid making assumptions about patient preferences regarding ACP based on race or other cultural attributes and elicit individual beliefs and values. Efforts to improve ACP must be multipronged, with physicians and health systems taking an active role in improving communication and trust in a community of seriously ill Americans deeply touched by personal and structural impacts of racism.
Author disclosures
JJS's work on this project was supported by the Richard A. Cantor Fund for Communications Research in Palliative Care and KRS is supported by a Mentored Research Scholar Grant in Applied and Clinical Research, MRSG-12-221-01-CPPB from the American Cancer Society. The authors report no conflicts of interest.
Acknowledgments
The authors thank Florine Johnson, R.N., for her gracious assistance in planning a focus group. JJS acknowledges the support of the Cambia Health Foundation, Jonathan Gass, and the faculty and staff of the Serious Illness Care Program.
