Interventions developed to improve care for Black people living with serious illness⁠—and how the palliative care field can leverage this work.

Hands holding up lightbulbs to represent ideas

Last fall, CAPC’s Project Equity workgroup conducted a comprehensive literature review to understand what is known about disparities in health care experiences and quality of life for Black people living with serious illness, and their families. This review highlighted many concerning findings, including that Black patients experience poorer quality pain and symptom management, greater financial burden, and greater caregiver burden compared to white patients. Taken together, these findings make a compelling case for why the palliative care field must actively work and engage in efforts to improve care for Black patients, and their caregivers.

"Taken together, these findings make a compelling case for why the palliative care field must actively work and engage in efforts to improve care for Black patients, and their caregivers."

Given this imperative to act, CAPC also sought to collect promising interventions to help improve care and reduce disparities for these patients. The goal of the literature review was to discover, “What interventions have been tried to improve care for Black patients with serious illness?”

Acknowledging and addressing gaps in the literature

Research published in peer-reviewed journals, however, only goes so far. Not all health care professionals have the time or resources to submit manuscripts describing their work for publication. Therefore, CAPC put out a national call for descriptions of initiatives that improve care for Black people living with serious illness and their families. With the help of CAPC’s Health Equity Steering Committee, the questionnaire was distributed to more than 100,000 health care professionals and shared through key organizations such as the National PACE Association, the National Association of Community Health Centers, and others.

While we did encounter some resistance to the idea that care quality improvement interventions should focus on patients in specific racial or ethnic groups (which we will explore in a future blog), we were able to identify a number of meaningful improvement projects. Those participants completed a short questionnaire describing key components of their initiatives. Out of hundreds of submissions, we identified 110 responses that had the greatest potential to improve care based on feasibility and/or impact.

Key Intervention Themes

As we reviewed the interventions, several themes emerged, which are highlighted below.

1) Innovation is happening everywhere

Responses came from across the United States, with interventions available in 49 states, as well as the District of Columbia and Puerto Rico. The highest number of interventions per state came from New York (21) and California (15).

2) A rich landscape of health equity interventions is developing

Organizations are engaged in a wide range of areas of improvement. The top intervention goals were to:

  • Improve staff knowledge and practices of diversity, equity, and inclusion (68%)
  • Improve person-centered communication between [the] care team and the patient or their caregiver(s) (66%)
  • Improve advance care planning or completion of advance directives (62%)
  • Improve access to palliative care (e.g., referral rates or utilization) (59%)
  • Improve on patient satisfaction or patient experience measures (56%)

3) Diverse organizations are implementing initiatives in a variety of settings

Hospitals (29%), hospices (24%), community-based organizations (such as faith-based organizations) (14%), home health agencies (3%), and medical offices (3%) all submitted initiatives. Those initiatives are being implemented in numerous locations, from the inpatient setting (44%) to cancer centers (12%). Initiatives are also moving beyond in-person interactions; some initiatives are available online (33%) or through telehealth (31%).

4) Initiatives are in all phases of progress

At the time of the questionnaire completion, about one-third (39%) of initiatives had already been implemented, another third (34%) were being implemented, and the final third (27%) were in the planning stages.

5) Many organizations are willing to share their work with others for replication

CAPC is now aware of a number of health organizations that are implementing important quality improvement projects to move the needle on inequities in serious illness care. A select number of the interventions, with information about their outcomes and impact, are part of the CAPC Innovation Hub.

Patient and Caregiver Voices

CAPC’s Project Equity Steering Committee highlighted the need to collect feedback on health equity interventions directly from Black patients and caregivers. In late May, we collaborated with Karen Bullock, PhD, LCSW, and the National Patient Advocate Foundation to conduct two listening sessions with a total of 18 patients, caregivers, and advocates. In these listening sessions, we introduced 18 interventions and asked which ones resonated with the group’s personal experiences. In the coming year, CAPC will use these discussions to help inform the development of additional technical assistance for health professionals looking to implement similar health equity initiatives at their organizations.

Participants observed that while certain clinical communication protocols could be helpful, the tools were only as good as the clinician using them. Therefore, even the best intervention may be ineffective if the clinician is biased, or has not done work to provide culturally competent care. Participants also emphasized that interventions that were holistic and focused on social needs were most appealing. For example, the first group highlighted that none of the selected interventions explicitly addressed financial toxicity during serious illness – a primary concern of many participants.

Takeaways

Hundreds of palliative care programs across the country are taking action to improve the care of Black patients living with serious illness, and their families. Reviewing these interventions provided a fuller picture of current work, including a better understanding of the specific domains they address. Overall, the response to this national call for interventions demonstrated that many in our field are making an ongoing, concerted effort to deliver more equitable health care and address disparities that influence the experience of illness for Black patients.

"As more palliative care teams consider how to advance equitable care for their patients, we strongly encourage them to leverage the work of teams that came before, collect data in order to evaluate the outcomes of their work, and share lessons learned with others."

As more palliative care teams consider how to advance equitable care for their patients, we strongly encourage them to leverage the work of teams that came before, collect data in order to evaluate the outcomes of their work, and share lessons learned with others. A guiding principle is to seek the perspectives of patients and caregivers to help identify care domains in need of attention, such as financial toxicity. In this way, we can all work together to grow the evidence base of health equity action for our field, guided by the needs and priorities of our patients.

This is only the beginning, and we look forward to continuing to work with experts inside and outside of the field to continue growing the knowledge base.

To learn more about CAPC’s Project Equity work, especially the successful equity-focused models and policies that can reduce racial/ethnic disparities and improve health outcomes, watch this on-demand briefing (recorded October 27, 2022).

Acknowledgements

We thank The Commonwealth Fund, The John A. Hartford Foundation, The Arthur Vining Davis Foundations, and Jeanne and Kenneth Levy Church for their generous support of this initiative.

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Edited by Melissa Baron. Clinical review by Andrew Esch, MD, MBA.

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