Considering Racial Trauma in African American Underuse of Hospice/Palliative Care
It has been well documented that African Americans facing a terminal illness are less likely than whites to choose hospice care (Ludke & Smucker, 2007; Cohen, 2008; Hardy et al., 2011). Explanations for this reluctance include mistrust; ineffective communication and/or cultural insensitivity by health care providers; lack of information; limited access; equating hospice services with substandard care; and cultural, family, or religious imperatives to trust in God’s capacity to heal and/or to “fight ’til the end” by seeking aggressive care (Johnson, Kuchibhatla, Sloane, Tanis, & Tulsky, 2005; Johnson, Kuchibhatla, & Tulsky, 2009; Phelps et al., 2009; Ramsey & Chin, 2012; Townsend-Stevens, 2016).
Such factors paint a picture of barriers those working in hospice and palliative care may face when having conversations with African American patients and their families about the potential value of such care. One factor not typically considered is the possible impact of psychological trauma when it comes to end-of-life decision making.
Research suggests that African Americans as a group have a higher risk of developing PTSD than the general population (Alim, Graves, & Mellman, 2006; Himle, Baser, Taylor, Campbell, & Jackson, 2009). In addition to being exposed to the same potentially traumatizing events as the rest of the population, from car accidents to combat, chronic exposure to racism can itself be traumatizing. Race-related posttraumatic stress and PTSD may originate from various causes including repeatedly being the target of microaggressions, direct or indirect exposure to race-related life-threatening events, and historical, vicarious, and/or transgenerational trauma.
Race-Based Stress and Trauma
Over time, the collective weight of microaggressions can result in symptoms of posttraumatic stress such as anxiety, fear, hypervigilance, avoidance, anger, or distrust. They can also activate the nervous system’s fight-flight-freeze response creating a powerful physiological stress response. When such activation occurs repeatedly it may become generalized to situations reminiscent in some way of those that have caused it in the past, a phenomenon known as “triggering.” Given that triggers are detected in the subcortical parts the brain, which, in the case of PTSD, have become hypersensitized to trauma reminders, these reactions happen instantly and usually subconsciously.
Cumulatively, exposure to these kinds of situational insults and threats can lead to posttraumatic stress and predispose someone to develop PTSD (Carter, 2007; Nadal, 2018). According to psychotherapist Monnica Williams, PhD, once someone is “sensitized through ongoing racism, routine slights may take an increasingly greater toll. Microaggressions, such as being followed by security guards in a department store, or seeing a white woman clutching her purse in an elevator when a black man enters, is just another trigger for racial stress” (2015).
Williams (2015) goes on to point out that “race-based stress and trauma extends beyond the direct behaviors of prejudiced individuals. We are surrounded by constant reminders that race-related danger can occur at any time, anywhere, to anyone. We might see clips on the nightly news featuring unarmed African Americans being killed on the street, in a holding cell, or even in a church. Learning of these events brings up an array of painful racially charged memories and what has been termed vicarious traumatization.”
As an example, research into barriers to African Americans using hospice care often mention the Tuskegee study in which African American men were allowed to die of an otherwise curable disease in the interests of “medical research.” Even though an African American patient may not have been personally or directly affected by this injustice, its memory may cause suspicion, fear, anger, and distrust (in this case, of medical professionals). This is sometimes referred to as “historical trauma,” in which a particular group is imprinted with awareness of traumatizing historical events to which their ancestors were exposed. Ancestors who have been directly traumatized by these kinds of events can also pass posttraumatic stress down as vicarious and/or transgenerational trauma.
Since African Americans as a group are more likely than the general population to develop PTSD, the risk that African American patients have some level of underlying posttraumatic stress should be considered elevated. Moreover, older patients have a greater likelihood than younger ones of having been exposed to a potentially traumatizing event and it has been shown that medical care can also cause PTSD (Pietrzak, Goldstein, Southwick, & Grant, 2012; Hall & Hall, 2016). Thus, in the case of African American patients with terminal illness, who tend to be older and to have experienced recent invasive medical care, the risk of PTSD should be considered especially high.
By itself, posttraumatic stress is not a satisfactory explanation for patterns of resistance detected among African Americans when it comes to hospice care. But in conjunction with other factors it may, in some cases, be an additional driver of this resistance. For example, mistrust of health care providers has been cited as a common factor in the research to date. Whatever the origins, mistrust can easily be exacerbated and amplified by PTSD, which can manifest as hypervigilance, suspicion or cynicism about another person’s motives, skepticism and distrust of authority figures, impulses to defend onesself against perceived threats, or negative views about the world and others.
Health care settings and interventions can feel dehumanizing and present a traumatized patient with countless trauma reminders, from being examined by a stranger to perceived differentials in status and power as well as distressing disease symptoms such as physical pain or respiratory problems. These reminders can trigger intense emotional reactions and defensive behaviors that may seem exaggerated or irrational to those who don’t understand posttraumatic stress. If medical staff responds with frustration or psychiatric labeling, or if staff is perceived as insensitive, racially biased, or uncaring, communication and trust may further erode.
It’s easy to see how such scenarios could raise suspicions among traumatized patients that when a palliative care physician suggests hospice she is offering a substandard kind of care. People with PTSD often feel stigmatized even without the additional challenges of having been subject to the stigma of negative racial stereotyping and the chronic interpersonal violence of microaggressions. When these combine, it’s easy to imagine traumatized African American patients fearing that they are being marginalized, underserved, given up on, “gotten rid of,” or offered an inferior type of care due to racism or to save an insurance company money.
Such cognitions are sometimes psychopathologized by medical staff as paranoid, but in cases where a patient has been racially traumatized, such cognitions are often self-protective. In a study of female veterans with PTSD, for example, C’de Baca, Castillo, and Qualls (2012) found that female African American veterans with PTSD, “scored higher on measuring ideas of persecution/paranoia” when compared with traumatized non-Hispanic white and Hispanic subjects. When placed in context, since feeling of persecution may be exhibited by persons with PTSD generally, they concluded that it was likely that the higher incidence of these negative beliefs in African Americans was “an adaptive response to racism.”
Addressing Negative Perceptions
Given that the incidence of posttraumatic stress and PTSD should be considered high in older African American patients, hospice and palliative care practitioners should also be trained in recognizing the signs of PTSD in their patients and how to respond in ways that create safety and respect. This is not to suggest that posttraumatic stress is a primary cause of resistance to hospice care within the African American community. Certainly there are good historical and cultural reasons for patients and families to be mistrustful and skeptical when making decisions as important as those that involve life and death. And there may be good personal reasons for choosing a more aggressive approach to care even when the prognosis is grim.
But if patients are experiencing underlying posttraumatic stress this may exacerbate fear and mistrust of health care staff and/or reinforce negative cognitions about their motives and recommendations. If a professional staff member is unaware of how triggers work and the ways intense nervous system arousal can make it hard to take in information, communication will be difficult. If staff are not aware of their own racial biases and historical patterns of oppression, and if they are not trained in culturally sensitive communication and trauma-informed care, they may inadvertently trigger intense posttraumatic reactions, raising defenses and reinforcing negative perceptions of hospice and palliative care.
— Scott Janssen is a hospice social worker in Durham, NC, and a member of the National Hospice and Palliative Care Organization's trauma informed care work group.
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