Can Race Dialogues Build Trust in Health Care?
By: Justin Sanders and Catherine Schofield
Racial disparities in health care begin before birth and are compounded by inequitable care across the lifespan. Upon facing serious illness and the end of life, people of color and others from marginalized communities already have significant mistrust in the health care system. Patients’ racialized experiences in health care, due to systemic factors or real or perceived bias and discrimination, can erode trust and infiltrate clinical encounters.
Mr. Jones* was a Black man in his mid-forties with multiple complications of late onset type I diabetes. In the years since his diagnosis, his heart had begun to fail, and nerve damage throughout his body left him with numbness, tingling, and pain that made every day difficult. Like too many others, he had severe asthma from living in a neighborhood colored by past redlining and present pollution. These conditions meant that, despite his young age, he was at high risk of dying.
Advance care planning was an essential task, and yet his primary care doctor (an author of this post) struggled to engage him in discussions about the future, specifically about what treatments might not help him. It always felt like the system (and the doctor as its representative) was trying to do one more thing to take something away from him. In the face of significant challenges, I observed how much his family had to fight for access to every treatment that he had received. He died in intensive care, pneumonia wreaking havoc on his asthma-weakened lungs. After his death his family and I regretted not having a chance to talk about what he’d want when he became critically ill. In light of all his experiences, it felt like a bridge that couldn’t be crossed.
When caring for patients of color, how can clinicians integrate an understanding of patients’ past experiences of racism to improve their experience of care? What words and behaviors might build trust and relationships rather than reinforce patterns of interaction that tend to do the opposite?
The Healing Potential of Race Dialogues
Race dialogues are conversations about race and racism among individuals holding different racial identities. They have been used in education and psychotherapy spaces to foster positive relationships. In health care settings, these conversations have the potential to cultivate meaningful, authentic healing relationships between patients of color and their clinicians. Such dialogues can support participants in exploring social identities and experiences relative to other people, which could translate into greater empathy, understanding, and anti-racist dialogues and action.
Introducing these conversations in clinical spaces has the potential to improve health care experiences and outcomes for people of color. Building stronger clinician-patient relationships can lead to higher-quality care and encourage engagement in important processes, such as advance care planning to prepare for their future with a serious illness.
Engaging in Difficult Conversations
Ariadne Labs’ Serious Illness Care Program developed the Serious Illness Conversation Guide, to help clinicians navigate difficult conversations with patients about their goals, values and priorities to inform their future care. With the vision of every patient affected by serious illness feeling known and cared for on their own terms, the Guide provides clinicians with structure and language to learn and honor what matters most to patients. Building on this idea and recognizing the way in which people’s experience of racism can undermine trust, we recently sought to develop a tool to support clinicians in having race dialogues with their patients.
Designing and Iterating a Tool Prototype
To co-design a tool prototype, our research team brought together Black patients, White clinicians, patient advocates, and an interprofessional, racially diverse advisory board.
Interviews with clinicians and patients revealed perceived or anticipated challenges and benefits in having these conversations. Patients and caregivers affected by serious illness who identified as Black or African-American shared stories of overt and subtle experiences of racism in health care settings. Their remarks expressed hopes for high quality and equitable health care in the context of caring interactions with clinicians. White physicians experienced in treating patients affected by serious illness revealed their worries about ‘getting it wrong’ or disrupting relationships by addressing racism. They also demonstrated curiosity and willingness to learn how to have these conversations as a way of improving health equity.
Using interview data and advisory board input, as well as human-centered design principles we developed a conversational tool prototype to promote race dialogues. After several cycles of iteration and improvement, we put our early prototype in front of patients and caregivers. We partnered with the Patient Insight Institute through the National Patient Advocate Foundation to recruit and interview 15 patients and caregivers, predominantly identifying as Black, with personal or family experience of serious illness. Their feedback informed a final prototype.
Talking about Racism to Advance Care Equity: The TRACE Tool
The Talking about Racism to Advance Care Equity (TRACE) tool offers clinicians structure and patient-tested language to support race dialogues in health care settings. Beyond the tool’s potential utility in supporting advance care planning, we anticipate the tool enhancing care at other critical moments in health care when experiences of racism may impact decision making and care, such as maternity or surgical care. Tracing patients’ experiences in the health care system and bringing them into the open can be therapeutic and cultivate compassion.
The tool is organized into three parts:
Reflection: Clinicians are encouraged to reflect upon a patient’s past health care experiences and the role that racism may have played in shaping them.
Action: Clinicians are given language to normalize the conversation and to invite patients to share their experiences.
Compassion: Provides language to acknowledge these experiences and affirm a commitment to providing the best possible care.
To educate clinicians about the tool, we developed an illustrative whiteboard video. We acknowledge the importance of training clinicians in how to facilitate these race dialogue conversations so they can be carried out skillfully and meaningfully and not cause further harm.
Next Steps
Before moving forward with dissemination and implementation of the TRACE tool in health systems, we are currently seeking funding to support its further testing in real world situations. Many questions remain about whether and how to integrate such a tool to meet its intended aims within the realities of clinical practice.
Other Initiatives Promoting Equitable Care
Our team is not alone in innovating to advance care equity through enhanced, high quality patient-clinician communication. At Stanford University, the Presence 5 team for racial justice offers recommendations to improve clinical communication and empower Black patients as they navigate getting care. They are working to develop medical education curriculum and piloting with patients and community partners. They are also exploring adaptations in pediatric settings and evaluating an allyship training program to support academic physicians of color.
For clinicians who want to address racism with their patients and improve health equity and outcomes, but struggle to find the words to do so, new communication tools offer innovative solutions. In a world in which racism has remarkable public health consequences, we are hopeful about the role that authentic, meaningful, compassionate relationships between clinicians and patients can play in healing. We hope to share more evidence about the benefit of the TRACE tool in the months and years to come.
*Not the patient’s real name to protect identity
