Abstract
June is a 48-year-old woman who is referred to my palliative care clinic for total body pain and anxiety. She has advanced cancer that has been treated successfully for many years. For more than a year she has had intermittent disabling pain from her neck to her extremities. At times it is burning in nature, and at times it is stiff and aching. She is forced to spend a day or two in bed when her pain becomes particularly severe. Despite extensive evaluation, the cause of her suffering remains elusive. Several of her medical team members have suggested that she seek help for anxiety and they have expressed that they do not believe that cancer is causing her pain. June, a vibrant African American woman, asserts that her mind is strong, and she refutes any notion that she needs help managing her emotional stress. She describes herself as a survivor, who grew up very poor, with little food and clothing, and who watched her mother die of inadequately treated cancer. What she seeks is an understanding of what is happening in her body. Something is changing and she knows it.
June's strong sense of who she is, and where she has been, fills the room. She is an amazing force, but she is also wary. She eyes me nervously, seemingly assessing my intentions. She agrees to speak to me once I assure her that I am not a psychiatrist. What she wants is to be heard, not analyzed. She knows that something is happening inside her body and she feels that no one is listening. As with all of my patients, I wanted her to feel that I would care for her in a way that would help to ease her distress, but I realized immediately that this feeling would have to be earned, not granted. I too felt nervous in our first meeting, and uncertain of how to navigate the distance between us. What I did know was that June would have to lead the way.
In the field of palliative care, we aspire to help people find peace and comfort, particularly as they near the end of life. We work to establish deep trusting relationships with our patients, to encourage an open dialogue about their goals and values. Then, we can help them make health care decisions that are in line with who they are. It can be extremely challenging to provide the sense of safety required to have these conversations if a patient with a terminal illness has a history of trauma. Patients with post-traumatic stress disorder (PTSD) may see the recurrence of unhealed trauma when faced with an incurable diagnosis. This may present with fight, flight (or freeze) reactions, or intense emotional reactions such as fear, anger, helplessness, avoidance, hypervigilance, anxiety, intrusive memories, dissociation, panic, nightmares, emotional numbing, withdrawal, and becoming easily overwhelmed. 1 In fact, in some patients, the terminal diagnosis itself can be the event that precipitates a traumatic reaction. Up to 35% of all cancer patients meet criteria for PTSD. 2
When treating African American patients, the trauma of hearing that one has an incurable disease may be further compounded by racial trauma, a type of constant trauma that can be experienced over a lifetime. As with all traumas, it can feel like a threat to life. Monnica Williams, PhD, defines racial trauma as a traumatic response to race-related experiences that are collectively characterized as racism, including acts of prejudice, discrimination, or violence against a subordinate racial group based on attitudes of superiority held by the dominant group. Racial trauma can be caused by overt or covert actions carried out by individuals or society. 3
In the medical arena, racial trauma may be particularly relevant, given the legacy of abuse of African Americans in the name of medical exploration. In her book, Medical Apartheid, Harriet A. Washington painfully details, beyond the well-known Tuskegee syphilis studies, how African Americans have been experimented upon and even tortured, to further the careers and the medical care of white people. She uses the term iatrophobia, or fear of doctors, to describe the feelings of many African Americans to this day. 4 One only has to look to present-day health disparities to understand why such distrust persists: African Americans die 3.5 years earlier than whites on average, disproportionately die in childhood, in childbirth, and of cancer. African Americans are also less likely to be enrolled in potentially beneficial clinical trials. 5
If patients have racial trauma, compounded by a serious illness, in a medical system with ongoing racial inequities and largely white clinicians, it is critical that we approach patients with cultural humility (CH). We are taught to be culturally sensitive, but CH goes much deeper. CH, a mental health term, describes the ability to be open to what we do not know, and to approach our patients with a curiosity about their unique experiences, and how they impact their experience and acceptance of their health care situation. 6 CH also requires that we look at ourselves, and our own biases, to bring awareness to how we are subconsciously impacted in our interactions with patients. We also must become educated about the racial abuse, and medical inequities that persist in our health care system, as these may directly affect a patient's willingness to speak openly in our offices. For me, that first awkward meeting with June marked the beginning of an educational and introspective odyssey. Along the way, I would discover how much I did not know about the history and experiences of African Americans in our country, how this lack of awareness contributes to the propagation of damaging practices, and how profoundly these experiences impact the doctor–patient relationship.
For several months, I spent many hours with June. I discovered what she values most: her intelligence, her autonomy, her spirituality, and her social connections. But I also heard how June experiences our society, our medical office, and even myself. She opened up about a lifetime of regular experiences of racism and about currently feeling that her medical complaints were not being taken seriously. June did exhibit some of the characteristics mentioned, of one who is dealing with a traumatic stress reaction—intense anxiety, hypervigilance, overwhelm, and helplessness—within our meetings. Since she attributed how her concerns were being addressed and communicated to an implicit or explicit expression of racial bias, it makes sense that her lifetime of experiencing racial inequities and mistreatment would come flooding back when facing her own mortality in a still unequal system.
Although June expressed a feeling of powerlessness in many areas of her life, she also prided herself on her strong place in her family and her community. She relied heavily on prayer to power her through her illness and despite all of the challenges that she has faced, she remained hopeful. Together, we navigated the system, helped her to get some answers, and discussed some difficult topics, including her wishes should her treatment stop working.
I am hopeful that she started to feel heard, since she opened up and we resolved some of her concerns. But, I am certain that she helped me to change the way that I practice medicine. Although deft communication skills are the very essence of quality palliative care and I would employ those well-worn skills that include speaking less, listening more, acknowledging emotion, and reflecting experience, I was immediately aware that June needed more to let me in. She needed to feel that I was an ally who understood that racism is a part of everything that she experiences, including her cancer. She needed me to hold back my tears while she described how she was treated at her child's school, at the bank, and by a nurse, so as not to shift the focus from her pain to my horror. She needed me to understand why she was so disturbed to have paperwork enrolling her in a clinical trial drawn up for her signature without adequate informed consent. She needed me to understand the personal and historical context of being told that what she was feeling was all in her head. And, above all, she needed me to push back on protocol to help her to obtain a new scan. I felt uncomfortable, unsure about the potential backlash that I could face as I extended beyond my usual role. But I had seen June's conviction and I was determined, in a small way, to help impede the cycle of bias that I felt I was witnessing. June's whole bearing changed once the scan was ordered. She told me that she could handle whatever it would show as she had her faith and her family. What she could not handle was feeling ignored or belittled. She knew her body and something was changing.
With special thanks to Kristee Haggins, PhD, and Monnica Williams, PhD.