key: cord-0811588-r9sdm89r authors: Johnson, Khaliah A.; Quest, Tammie; Curseen, Kimberly title: Will you hear me? Have you heard me? Do you see me? Adding Cultural Humility to Resource Allocation and Priority Setting Discussions in the care of African-American patients with Covid-19 date: 2020-09-02 journal: J Pain Symptom Manage DOI: 10.1016/j.jpainsymman.2020.08.036 sha: c1fc8502adabdbcbe1fd724365e55f58740ba147 doc_id: 811588 cord_uid: r9sdm89r The COVID-19 pandemic has refocused our attention on healthcare disparities affecting patients of color, with a growing body of literature focused on the etiology of these disparities and strategies to eliminate their effects. In considering the unique impact COVID-19 is having on African American communities, added measure must be given to ensure for sensitivity, empathy, and supportive guidance in medical decision-making amongst African American patients faced with critical illness secondary to COVID-19. In this article, we explore the applications of cultural humility over cultural competency in optimizing the care we provide to African American patients faced with critical healthcare decisions during this pandemic. In turn, we charge one another as healthcare providers to consider how ethical principles and guidance can be applied to honor African American patients’ unique stories and experiences. Abstract: The COVID-19 pandemic has refocused our attention on healthcare disparities affecting patients of color, with a growing body of literature focused on the etiology of these disparities and strategies to eliminate their effects. In considering the unique impact COVID-19 is having on African American communities, added measure must be given to ensure for sensitivity, empathy, and supportive guidance in medical decision-making amongst African American patients faced with critical illness secondary to COVID-19. In this article, we explore the applications of cultural humility over cultural competency in optimizing the care we provide to African American patients faced with critical healthcare decisions during this pandemic. In turn, we charge one another as healthcare providers to consider how ethical principles and guidance can be applied to honor African American patients' unique stories and experiences. Me: As you consider your own health at these times, mom…what worries you most? Mom: I press on doing the best I can managing my health. But I'm never sure if I'm getting all the information I need from the doctors. They taper the information down, because they think I won't understand it. That scares me. I have been left in a hallway of a hospital before, unattended to, with questions that I never got to ask. Now I wonder, if I get sick with COVID-19, will I be fairly presented with all my options? These heartfelt words were shared in a tender conversation between my mother and me in early April, as we discussed the realities she, a senior-aged African American woman with multiple underlying comorbidities, faces during the COVID-19 pandemic. As a palliative care physician and her daughter, I want nothing more than to be prepared to honor and respect her wishes should she fall ill with COVID-19. The painful reality that is inextricable from our experience, which we no choice but to confront, is that her race may inevitably impact the care she receives and ultimately whether she lives or dies. As I engaged in this dialogue and decision-making with my mother, I also bore witness to the stories of other palliative care colleagues who were having similar conversations with their African American patients admitted to the hospital, often critically ill, wondering what their fate would be in the midst of this global crisis. In evaluating the impact of the pandemic across the United States, communities of color are disproportionately affected, with a higher burden of morbidity and mortality seen amongst African Americans 1 . Published reports show death rates from COVID-19 three times higher nationally in predominantly Black counties compared to predominantly White counties, and as much as 70% of deaths occurring amongst Blacks in certain states 2, 3 . Simultaneously, health care systems across the nation are creating approaches and policies to determine how life sustaining resources such as ventilators, dialysis, and blood, may have to be reallocated if scarcity arises. In the wake of these challenging times, we as authors offer this reflective piece with the goal of helping to equip the palliative care community with tools and strategies for thoughtfully approaching the communication and care of African Americans with COVID-19 facing life and death decisions. The decisions surrounding how one wants to be cared for in critical illness and at the end of life are notably sensitive. Prior to COVID-19, African Americans have expressed concerns that their wishes in the face of serious illness will not be respected 4 . While not yet studied, one might expect this would be heightened at this time. Shrouded in a veil of mistrust and amplified by media reports that person of color have higher death rates, discussions around life sustaining therapies may be more strained. Historically, how African Americans view their lives is inseparable from connections to family and community, the roles played in caring for others, and the injustices experienced throughout life because of one's race. As African Americans are confronted with life or death decisions in the consideration of advance care planning, questions may inevitably arise for them that are difficult to impossible to verbalize to their healthcare providers because of the pain and complexity with which they are associated. Will I be denied life-sustaining therapies because I am viewed as less than? If I opted not to be resuscitated as my condition worsens, am I letting down my family, my people, God? Will the injustices in access to care lived by others I have known and loved also play out for me? Am I worth saving? Often, these questions are rooted in social, cultural, and spiritual traditions and constructs that extend across generations and experiences that are supported by anecdotal evidence as well as qualitative and quantitative data 5 . These questions may be more present to varying degrees in the conscience minds of our Black patients as we engage them in open conversations about prognosis and the application of life-sustaining therapies in COVID-19. We must recognize that African Americans are not monolithic; their experiences are not shaped alone by their Blackness. Compounded by the lack of visitors allowed in acute care settings and an inability to access support for shared decision-making such as family, friends and spiritual communities -providers may find engendering trust and respect to be complex and difficult at times. Dr. Cicely Saunders, the founder of the modern hospice movement, espoused that every individual is worthy of the chance to self-actualize through the end of life, regardless of whom they are and what illness they ultimately succumb to 6 . The process of exploring patients' hopes and wishes should begin with cultural humility, in which we step outside of ourselves as healthcare providers and acknowledge our African American patients' authority over their own experiences, despite the lack of control we all have in these unprecedented times. It is important to hear what losses individuals in Black and Brown communities have already endured through the pandemic, and to acknowledge the emotions that arise for them. Depending on cultural competence for effective communication is not enough for healthcare providers to rely on when attempting to have meaningful communication. A recent qualitative study evaluating views of health disparities experts, community members, and African American patients and care-givers facing serious illness found that patients and caregivers trusted their medical teams; wanted prognostic information communication; and expressed a desire to prepare for the end of life 7 . Health disparities experts echoed themes of mistrust, spirituality, religiosity, desire to limit prognostication, and fatalism as barriers to effective advance care planning. These varying points of view call our attention to the pitfall of leaning too heavily on cultural competency as opposed to leading with cultural humility. There are several excellent tools that have been developed to facilitate communication in COVID-19, as well as frame works and interventions presented in the literature to address end of life decision making in underprepresented groups 8, 9, 10 . In applying cultural humility as the foundational step prior to using these frameworks, we take the time to understand how an individual fits into their family and community and consider, "What are they losing if death occurs?" We as providers may have a patient with poor prognostic indicators and limited function, and therefore our hope is to mitigate their suffering by avoiding life sustaining measures that may not be successful. However, the patient's family may see that person as the glue that binds the family, their purpose in life, a grounding force, and someone deserving of everything we have to offer. If we start medical decision-making conversations with the question, "What is most important to you?" before we understand who we are talking to and about, we can receive answers that are incongruent, confusing, personally frustrating, and difficult to advocate for and abide with. This approach can result in tension within ourselves and with patients and families, inevitably fostering mistrust. "Do-Not-Resuscitate" discussions in our society are not purely medical decisions-they cross the boundaries of one's self-worth and core values 11 . In affirming someone's life by asking who they are first and subsequently what's important to them, we demonstrate empathy. This lays the ground work for more difficult conversations and prepares us for the response. It will also allow us to make recommendations from a place of awareness which can set the foundation for trust; the kind of trust that bridges differences in culture, ethnicity, and religion. This trust will be imperative to heal the relationship between healthcare and the community if we are placed in a position that requires us to allocate limited resources within demographics hardest hit by the pandemic. While we are guided in medical practice by the ethical principle of distributive justice, we are charged with applying the unique circumstance of each patient to the resource constraints we are facing at any given moment. Ultimately, this is a time when we cannot separate our humanness from the practice of medicine and how we attend to patients, particularly those who are disproportionately affected by the pandemic. Cultural humility enables us to remain present to the individual patient's reality, so we can assist them in making decisions that best align with their values regardless of prognosis and resource allocation limitations we may be unable to change during this pandemic 12, 13 . As authors and leaders in this field who happen to be African American women, we continue to reflect on our clinical experience, the current evidence base, and recent conversations with our own patients and family members. We believe the palliative care community is uniquely positioned to lead the way in acknowledging the role that race can play in critical end of life decision-making, particularly in the setting of COVID-19. We hope that in sharing our perspectives openly, we can encourage clinicians in our field and across disciplines to hold the stories of their patients at the center of the care they provide in this unprecedented era. COVID-19 and African Americans The coronavirus is infecting and killing Black Americans at an alarmingly high rate This time must be different: disparities during the COVID-19 pandemic Advance care planning outcomes in African Americans: an empirical look at the trust variable Dismantling structural racism, supporting black lives, and achieving health equity: our role. NEJM Embracing Cicely Saunders's concept of total pain From barriers to assets: rethinking factors impacting advance care planning for African Americans End-of-life decision-making, decisional conflict, and enhanced information: race effects End-of-life decision making and communication of bereaved family members of African Americans with serious illness COVID ready communication playbook Reviving the conversation around CPR/DNR Fair allocation of scarce medical resources in the time of Covid-19. NEJM Cultural humility: A concept analysis