Editor’s Note: The John A. Hartford Foundation is collaborating with ASA RISE to advance equity through a series of blog posts in support of the development and dissemination of equity-related, partnership-based thought leadership through ASA’s Generation platform. This blog post is part of that series.
The Center to Advance Palliative Care (CAPC) is a national organization dedicated to improving quality of life and strengthening care delivery for people living with serious illness and their caregivers. We do this by advancing palliative care, a medical specialty that improves quality of life for people with serious illness through symptom management, caregiver support, skilled communication about patients’ goals of care, and by addressing patients’ social, psychological, and spiritual distress.
Reducing avoidable suffering is the core of CAPC’s—and the palliative care field’s—mission. That is why health equity is a major pillar of CAPC’s strategic plan. We know we can’t improve care quality for older adults with serious illness if we are not working toward more equitable care delivery.
To this end, CAPC works to raise awareness of the disparities that exist for people with serious illness and their caregivers while identifying feasible actions that members of the health care ecosystem can take to close gaps and address disparities.
For example, our health equity policy agenda recommends tying quality measures and payment to routine symptom assessment and management. That is good for every patient, and it would address a major disparity that we see in the literature.
Understanding Health Disparities in Serious Illness
Health disparities in serious illness take many forms, including differences in disease incidence and mortality rates, as well as timeliness of diagnosis. For example, rural farming areas have higher rates of Parkinson’s and certain cancers than urban areas, which is correlated with exposure to pesticides and environmental chemicals. And Black women are more likely to have later breast cancer diagnoses, which can affect treatment outcomes and mortality rates.
We can’t say to stressed health systems and health care teams, “Tack on another thing.” Equity is synonymous with high-quality care. It’s a required component of high-quality care, and we need to teach it as such.
Access to care also varies greatly based on geography, insurance status, and socioeconomic factors. Out-of-pocket costs associated with serious illness can be very high even for people who are insured, which can force them to make choices about how much or which health care they are able to access.
There are also stark disparities in people’s experiences of health care, particularly along racial and ethnic lines. Black and Hispanic patients report lower-quality communication with their clinicians than white patients do. For people with serious illness, the stakes of clinician-patient trust and communication are especially high. We’re talking about prognosis, goals of care, and complicated treatment decisions that should reflect what matters most to patients.
Symptom management, particularly pain management, is another area with significant racial disparities. Racial and ethnic minority populations in the U.S. are less likely to have their pain assessed and less likely to have it appropriately managed when it is assessed. To me, that is the definition of avoidable suffering.
Equipping the Health Care Workforce to Address Disparities in Serious Illness Care
At the end of this year, CAPC will launch a new online self-study curriculum for clinicians from all professions on strategies to address disparities and improve care quality.
The goal is for any clinician, whether working in palliative care or not, to understand the disparities that exist and have practical actions they can take within their workflow to improve care quality, build trust with patients who may have historically had worse experiences with the health care system, and improve communication.
Brittany Chambers, MPH, MCHES, CAPC’s Senior Director, Health Equity, presents at the CAPC National Seminar. Photo credit: Pel Productions
The key to this being effective is to make it feasible. We can’t say to stressed health systems and health care teams, “Tack on another thing.” Equity is synonymous with high-quality care. It’s a required component of high-quality care, and we need to teach it as such.
We also need greater diversity in the health care workforce. As you move up the hierarchical ladder in U.S. medicine, the proportion of health professionals who are white increases, and many patients are not receiving racially concordant care. Building a more diverse workforce will take sustained efforts by professional associations and national organizations to build pipelines and attract diverse, talented people to health care.
There are also promising efforts to integrate community health workers into palliative care teams. These are often people from the community who are trusted by patients and understand their culture and values. They can educate patients, serve as liaisons with health care teams, and help people navigate community resources. We need to build bridges between the halls of medicine and the communities where people live, work, pray, and get care.
Keeping Equity a Priority Amid Health Care Pressures
There is reason for optimism: The palliative care field is highly engaged around health equity, and there are passionate equity champions who are innovating, advocating and sharing lessons learned.
Even amid funding cuts and other pressures on health care organizations, equity must remain a priority. Health equity isn’t an add-on. It is just good leadership to ask: Who am I serving, and who am I not reaching? Am I providing the highest-quality care to all my patients? Those are the driving questions around health equity.
There is reason for optimism: The palliative care field is highly engaged around health equity, and there are passionate equity champions who are innovating, advocating and sharing lessons learned.
With support from The John A. Hartford Foundation, we convene equity champions from across the country to share strategies and engage in problem-solving together. Equity work can be difficult and isolating, so these connections help to build community and allow good ideas to cross-pollinate.
We also provide tools and resources to help health equity champions make the case inside financially pressured health systems that better care leads to better outcomes—not just for patients and families, but for health care organizations.
Supporting Older Adults and Families Through Community Partnerships
Communities have many resources outside the formal health care system that can provide social, logistical, and navigational support to families facing serious illness.
We encourage palliative care teams to conduct a community assessment, and we have free, publicly available tools on our website to help them do that. Teams should identify not only other health care providers but also resources such as food delivery, services offered by area agencies on aging, and support from local faith communities. They can then help patients and families navigate resources they may not know are available.
Many of the tools we have to address social determinants of health are community resources and networks, especially in rural areas. My grandmother lives on a farm in rural Minnesota. In her town, the person who delivers the newspaper also does wellness checks for older adults because that person is already on the route and knows everyone. There are these nontraditional relationships that can be formed if you look for them.
Sharing Effective Approaches for Advancing Equity
CAPC recently launched a new Equity in Action Hub, a free, publicly available collection of health equity interventions with evidence of reducing disparities. We worked with the leaders of those interventions to understand how they made the case, launched and staffed their work, what training they required, and how they funded it. The goal is to help others learn from and reproduce effective approaches in their own communities. We’ll continue adding to the collection as we learn about new work. We want to let good ideas see the light and be used by others.
Brynn Bowman, MPA, is chief executive officer of the Center to Advance Palliative Care. She is also an assistant professor in the Brookdale Department of Geriatrics and Palliative Medicine at the Icahn School of Medicine at Mount Sinai.
Photo credit: iStock
CAPC’s Health Equity Accelerator Workshop, a year-long program on how to design, implement, and sustain health equity initiatives for patients with serious illness, included faculty Brynn Bowman, MPA, left, Arika Moore, MSW, LICSW, APHSW-C, Marisette Hasan, BSN, RN, Carine Davila, MD, MPH, Komal Chandra, PhD, Rayna Ross, CHES, Andrya Rivera-Burciaga, DNP, FNP, Jackelyn Boyden, PhD, MPH, RN, and Brittany Chambers, MPH, MCHES.
