By Beryne Odeny (Washington University in St. Louis, Department of Surgery) and Julia Robinson (PLOS Global Public Health) The first in-person CUGH…
By contributing authors Amy Tan, MD MSc(Pall Med) CCFP(PC), FCFP, and Alexandra Dobie, MSW, LICSW, APHSW-C
Content warning: This post contains vignettes that describe pain, death, and trauma. It may trigger some stressful memories or emotions for people who may see themselves in the vignettes. We encourage readers to take care and prioritize their mental health.
Linh: She didn’t want to be told the details of her illness or talk about dying. A former refugee from Vietnam, she was a soft-spoken person who always greeted people with a smile and rarely complained, even when in significant discomfort. Though she maintains capacity to make decisions and is fully informed, she explicitly wants her husband, Duc, to make medical decisions and direct her care. She wants him to be at peace with his decisions. The healthcare team questions whether Duc may be controlling or abusive towards his wife after he has an outburst, repeatedly questioning many aspects of his wife’s care, and labels him as “difficult”. Eventually, Duc’s despair over being silenced and mislabeled comes tumbling out. Their family cultural practice is to wait for authority figures to finish sharing their information before sharing their own thoughts. Duc feels he is never given any opportunity to express concerns or ask questions, often feeling the medical team was too busy to listen. He also feels that — as he has experienced throughout his time in the United States — his limited English proficiency is erroneously equated with limited intellect. Duc recounts their harrowing journey escaping Vietnam together during the war, including being caught and sent to labor camps several times before making their way with their baby to the US as refugees. He is experiencing immense grief and regret about his wife’s inevitable death because they spent the last two years denying she was seriously ill and now feels he hasn’t had time to come to terms with the situation. He fears he won’t know what to do once she’s gone.
Richard: His pain was overwhelming. Medications used to treat his cancer pain were not effective. There were several notes in the charting that questioned whether he really needed such high doses of pain medications. Richard would frequently ring his bell in distress but become very anxious, literally vibrating with distress, whenever someone entered his room. Some trust was gained over a few days of working with him and he shared that he didn’t feel safe in the healthcare system. He shared that his Indigenous community has been harmed by government systems and ignored for generations and he expects this treatment will continue. He doesn’t like being touched without being asked because of abuse he endured as a residential school survivor. He has lost several family members and friends from suicide over the years and as recently as a few weeks prior. He was terrified that his children would not cope well with his impending death and that they too would end their lives by suicide given the lack of support their community receives in culturally safe ways of coping and healing. He expressed his wish that his children would reconnect to, and embrace, their culture’s spiritual ways of healing and bereavement and so that it could be taught to his grandchildren. He also would like to have the wisdom of his Elders in helping him figure out next steps in his care plan.
Adeel: His son, Malik, voices frustration about the daily denial of his requests to stay bedside beyond visiting hours with his father Adeel, a Black man who is in the hospital intubated, sedated, and minimally responsive. Due to the COVID-19 pandemic, visitor hours are restricted. The medical team recommends a comfort-oriented plan of care as current aggressive treatments are medically non beneficial. Further, visiting hours are liberalized for patients on a comfort plan. Malik declines the recommendation and insists on continuing artificial nutrition, including the administration of natural supplements provided by the family which are important for the patient’s faith. When exploring how we might support Adeel’s spirituality, Malik is initially evasive before sharing that his father is a very faithful Muslim. Later, Malik describes his perception that the visiting hours are a bargaining chip to coerce family into agreeing to a comfort plan of care. He expresses skepticism that his father will continue to receive care should the medical plan change. Malik explicitly shares his concern that Black patients are improperly cared for by health systems, stating, “He’s Black. I don’t know what goes on when I’m not here. I need to make sure he is treated right”. He makes an allusion that as someone who is Black and Muslim, his father is even more vulnerable. Staff complains about the smell of the supplement, argues about the harm of “force-feeding” him, and expresses their distress at witnessing this given the medical futility of this treatment.
These vignettes are based on real-life patients that the authors were involved in caring for, but details were purposefully altered to maintain privacy. These cases were all labelled as “ethically-challenging” by people providing healthcare for these patients and family units. While Dr. Tan is a palliative care physician who practices in Canada, and Ms. Dobie is a palliative care social worker who practices in the United States, they realized that the stories of patients of non-European descent in Palliative Care on both sides of the border — and who were considered ethically-challenging — shared many disquieting similarities. These vignettes may feel familiar to patient encounters you have had.
In palliative care, we proclaim that the gold-standard of this interdisciplinary medical specialty is that the care provided is patient and family-centred. In collaborating with patients and families to elicit what is most important to them, we work to align patient values with medical care that might support their goals. As palliative care providers, we try to understand the context of patients’ reasons for decisions even when we don’t necessarily agree with them from a medical perspective, provide education to patients, families and our healthcare colleagues, and advocate on behalf of patients and families. But what if our approach to patient and family-centred care isn’t as wholly inclusive as it should be? The field of palliative care is rooted in Western perspectives of death and dying and built on policies and practices that enforces euro-ethnocentrism. To better understand a patient and family’s context, we must make space within ourselves and in our discussions with patients and families for the possibility of individual and intergenerational trauma that result from colonial policies that perpetuate institutional inequities and systemic, structural and interpersonal racism. To ignore this possibility runs the risk of inadvertently preserving the dynamics of oppressive interactions in the health system and in the helping professions. Furthermore, difficult patient-physician encounters in literature are framed within a colonial context with Western values and knowledge, similar to how medical professionalism is defined. This focus on one way of knowing perpetuates epistemic racism.
We invite our colleagues to consider opportunities to provide culturally-safe and anti-racist care.
- Recognize our own roles in perpetuating racial harm as healthcare providers.
We cannot change or challenge what we do not acknowledge. Dr. Tan and Ms. Dobie are sisters of Chinese descent whose parents immigrated to Canada from Hong Kong. They were born and raised in Western Canada on the traditional, unceded lands of the Coast Salish peoples, known as Vancouver, BC. They were both socialized within the context of settler-colonialism which is framed around euro-ethnocentrism. We recognize this context in which we were raised fostered the development of our own implicit biases and its negative impacts. These biases influence our interactions which can have harmful impacts on racialized and Indigenous patients for whom we provide care, especially when left unexamined.
Dr. Tan was taught to approach medical ethics without any context and consideration of the settler-colonialism and racism that is baked into the Canadian healthcare system while in medical school and residency training. She had to acquire this learning as part of her own continuous education. Ms. Dobie’s Social Work education and training did introduce her to the concepts of anti-oppressive practice and anti-racism which includes the practice of critically examining policies and systems that uphold racism or the current status quo. This education was illuminating regarding colonialism in Canada, the atrocities of the Sixties Scoop and not-so-distant residential schools, and ongoing intergenerational trauma. Over our years of clinical practice in Canada and the US, and our conscious efforts to challenge personal and systemic biases, we have each evolved in our understanding and awareness of where the Western biomedical model and bioethical frameworks may be limiting our ability to provide culturally-safe and anti-racist care. We continue to make mistakes but humbly learn from these by listening to the experiences of those who are directly impacted by systemic racism in healthcare and palliative care. Naming when we have perpetuated racism through words, ideas, or actions, is one step in disrupting racism. Ongoing reflection and reflexivity invites this ongoing practice development.
- Shift the conversation from “What’s wrong with you?” to “What happened to you?”
Trauma-informed care creates an opportunity to shift our thinking and genuinely explore patients’ and families’ experiences, including experiences of racial trauma, however they feel comfortable. As they share their story, do you notice any reactions you are having as the clinician? What past experiences have you had that may be influencing how you are interacting with this patient and/or family member? When our conversations focus on “what’s wrong with you”, we run the risk of dehumanizing people and breaking trust. This shift in thinking allows us to center the humanity of each person and to develop empathy. In our practice, we have started to expand on this by asking patients, “What have you experienced in your life? What has been done to you?”
Every patient has a different lived experience shaped by their own connection to their ethnicity, culture, spirituality, upbringing, and past traumas that will shape their decisions, (including how and with whom they want to make decisions), goals and values. Given that we enter into a patient and family’s lives at a specific moment, we must recognize and honour that the totality of their lived experiences shape their perspective of living with serious illness. Lifelong experiences of covert racist harm is a form of trauma that is underrecognized. The Truth and Reconciliation Commission (TRC) in Canada explicitly lays out the effects of several forms of trauma, including intergenerational, to Indigenous people in Canada. Other work has identified that mistrust of the healthcare system results from previous experiences and/or cultural value differences. Simply asking patients if racism affects their experiences in healthcare may be an effective intervention. The goal isn’t to force people to talk about trauma and harm they have experienced, but for healthcare providers to consciously create safe spaces to allow for this if patients feel able to talk about their experiences.
Dignity-Conserving Care can be a helpful starting point in developing an anti-racist approach to care. We each independently began incorporating Dr Chochinov’s Dignity-Conserving Care several years ago in our practices. To us, it epitomizes the essence of patient-centred care. Remember our patient Richard who was experiencing overwhelming pain and who wished to have the Elders in his community assist with care planning? His disclosure of lifelong colonial and racist trauma was in response to Dr. Tan asking, “What do I need to know about you as a person to give you the best care possible?” This led Dr. Tan to realize how the Patient Dignity Question (PDQ) could be an effective way for healthcare providers to seek permission to unpack trauma, including racist harm, without expecting patients to talk about it before they are ready. Ms. Dobie has observed that when she asks patients this question, they often will share something personal about themselves that centres their personhood.
3. Challenge ourselves and each other when we find ourselves labelling someone as a “difficult patient”.
We invite you to critically look at your next ethically-challenging case from a different lens personally, and to discuss within your clinical teams the ways that implicit bias or systemic issues are reflected upon in direct patient encounters. Ask yourself and your teams: What has made this situation challenging? Why do we see this situation or person as “difficult”? Is there something else that could be going on for this person? For myself? Are we maintaining the status quo, which historically has disadvantaged racialized people? Could any of the interactions be seen from a different perspective and as perpetuating racist thoughts or actions? In these challenging situations, is there only one “right” way to provide care to someone living with serious illness or who is dying? Discussions within teams of challenging cases with these questions and considerations could help teams in developing a more culturally-safe and inclusive patient and family-centred approach to the case at hand.
These vignettes include patient values about feeding at the end of life, including supplements that were important to the patient’s faith or culture. While Complementary and Alternative Medicine (CAM) is seen as inferior to “scientific” Western medicine, we would like to ask, especially in the context of palliative care, is there opportunity to explicitly support the use of traditional healing methods along with Western medical approaches that will embrace our patients’ desire for holistic care? Does the epistemic racism upheld by Western medicine limit us in our ability to be open to other ways of knowing at a time when patients being treated within their cultural context and beliefs could be so invaluable to their quality of life? In the case where Malik was serving as the voice for his father, Adeel, who was intubated, sedated, and dying: was there a way we could have elicited Malik’s fears for his father or the family’s cultural context and beliefs such that we could have enhanced Adeel’s care earlier? Given that the use of CAM has been found to be a method of coping and regaining control for those who have experienced racism within the healthcare system, perhaps this would be an effective manner to help build trust for patients as they are facing palliative care needs. Similarly, there is an explicit call in the TRC to incorporate Indigenous ways of healing and “to recognize the value of Aboriginal healing practices and use them in the treatment of Aboriginal patients in collaboration with Aboriginal healers and Elders where requested by Aboriginal patients.”
4. Examine systemic and institutional policies.
Clinicians must not only work to dismantle oppressive practices at the bedside, but also to formulate a critical lens through which all system level policies are examined and implemented with an anti-oppressive focus. This is essential to ensure that the palliative care we provide is truly inclusive of “everyone”, which includes those populations historically excluded from hospice and end-of-life care. This requires understanding the ongoing colonialism and white supremacy within the healthcare systems that continues to harm Black, Indigenous and racialized people on both sides of the border. Specifically, clinicians in Canada must ensure that policies created for the care of palliative care patients include the Calls to Action of the Truth and Reconciliation Commission as we work towards decolonizing the healthcare system. Similarly, our American colleagues must progress towards equity in healthcare by examining and addressing policies regarding healthcare disparities – including access to healthcare – that have historically broken trust and disenfranchised groups. Decreasing barriers to equitable access to healthcare could begin with ensuring that interpretation services are used every time a non-majority language speaker interacts with any healthcare provider. The fact that this isn’t even the standard of care indicates the many ways in which systems and policies perpetuate structural racism, impact healthcare quality, and undermine trust.
Consider also, who typically provides palliative care in our current healthcare systems. Do our patients see themselves or their perspectives reflected to some degree in their healthcare providers? We must deliberately work towards true inclusion and belonging of racialized and Indigenous clinicians in the field of palliative care that incorporates awareness of societal power dynamics, while purposefully increasing equitable access to palliative care training programs for physicians, nurses, social workers and chaplains from diverse ethnic and racial backgrounds. Explicit learning on how to effectively react to and disarm acts of racism from patients and team members towards racialized colleagues is imperative. Research into palliative care outcomes and access must also be culturally safe and include the perspectives of diverse populations regarding serious illness, death, and dying.
5. Engaging in culturally-safe and anti-racist practice never ends and is a life-long process.
Medicine now strives to provide culturally-safe care. Being culturally safe doesn’t mean knowing exactly what each culture wants or relying on stereotypes to inform communication and care; rather, cultural safety involves being open to acknowledging that there are other ways of knowing and being than we may have been socialized within, and how this impacts our interactions with our patients. Interpersonal racism persists through the stereotyping of patients which can result in harmful approaches due to our implicit biases. Cultural safety is also about exploring how these ways may align with and enhance medical approaches to care for different patients. For example, values such as personal autonomy, while the central tenet in Western medicine, may not be the priority for the patient who may prefer family or community-based decision-making such as in the case of Linh, our patient who did not want to know details of her illness or talk about dying. While she maintains capacity to make decisions for herself, should we insist that she do so despite her expressed wish not to and even if there is conflict with her designated surrogate decision maker? Ongoing reflective and reflexive practice challenges us to see how we may perpetuate racist ideas through action or inaction, which in turn cause harm and uphold racist structures.
A life-long anti-racist practice involves a commitment to ongoing reflection on how racism is perpetuated — consciously and unconsciously — at the personal and systemic levels. It involves action at all levels, from the personal to the structural, to bring awareness and make changes to these practices and policies.
We share these case vignettes and pose questions to provoke reflection and thought on how the perception of ethically-challenging patient situations in Palliative Care could potentially perpetuate epistemic and structural racism in healthcare. Perfection is not the goal. We have each made many mistakes over the years and know we will continue to do so. We wanted to create a space where we might challenge our own thinking — thinking that reflects each of our own lived experiences in North American healthcare systems in which we have been socialized, including our unconscious biases. We invite you to join us in this journey.
The authors acknowledge with respect and gratitude the lək̓ʷəŋən peoples on whose unceded, traditional territory Dr Tan is privileged to live and work, and the Songhees, Esquimalt and W̱SÁNEĆ peoples whose historical relationships with the land continue to this day. Ms Dobie acknowledges with respect and gratitude the territory of the Massachusett and their neighbours the Wampanoag, and Nipmuc Peoples.
Dr Amy Tan, MD MSc (Pall Med) CCFP(PC) FCFP, is a Clinical Associate Professor, Division of Palliative Care, UBC Faculty of Medicine, and has been a palliative care and family physician for 17 years. She is Medical Director for Victoria Hospice and a speaker and researcher on anti-racism in medicine, primary palliative care, culturally-safe communication and decision-making with patients, and advance care planning. She is a Section Editor for PLOS Global Public Health’s Racism and Health section. Her Twitter handle is @AmyTanMD
Alexandra L. Dobie, MSW, LICSW, APHSW-C, has been the Clinical Social Worker in the Palliative Medicine consult service since 2015 at Boston Medical Center (BMC), New England’s largest safety net hospital. She is also the Psychosocial Services Director for the Palliative Medicine team and provides education on anti-racism and culturally-safe communication in the context of advance care planning and healthcare. She began her career in 2007 as a social worker working with populations within various cultural contexts including on-reserve Indigenous communities in Canada and communities in southwestern Uganda. Her Twitter handle is @ALyDobie