When asked what kind of care they prefer, most people living with serious illnesses want to focus on the quality of their life as they live with their condition over several years, experiencing a gradual decline in health.
People living with serious illness are defined as those who have one or more chronic conditions, such as heart or lung disease, and are limited in their ability to perform basic everyday tasks like dressing, bathing or walking. Knowing this, the National Academy of Medicine recently held its second roundtable in a series discussing the quality of care received by people with serious illness.
The goal of the "Roundtable on Quality of Care for People with Serious Illness” workshops is for participants to collaborate and learn from other stakeholders interested in a shared vision of high-quality, community-based care for people with serious illness (also described as high-need patients). The first workshop, Integrating the Patient and Caregiver Voice into Serious Illness Care, was held in December 2016 with the objective of examining opportunities to meaningfully involve people living with serious illness, and those who care for them, in creating and delivering high-quality care.
The second workshop “Models and Strategies to Integrate Palliative Care Principles into Care for People with Serious Illness” was held in April 2017 and focused on innovative, community-based models of care for people of all ages facing serious illness. The goal of this workshop was to examine these models – from concept to action and success – and to include the experiences of those who benefit from them. Moderated panel presentations and interactive audience discussion explored a range of topics, including:
- Gaps, challenges and potential strategies for providing community-based serious illness care;
- Examples of high-quality care programs delivered in the community, improving the quality of life for very high-need populations;
- Essential elements of successful care models in a broad range of patient populations, payment models, clinical settings and geographic settings;
- Workforce needs and the key role of interdisciplinary teams; and
Policy changes to support and spread community-based health care programs for people with serious illness.
Core competencies of community-based care
Co-chair for the workshop was Diane Meier, MD, FACP, director of the Center to Advance Palliative Care and vice-chair for public policy and professor at the Icahn School of Medicine at Mount Sinai. Dr. Meier has worked in palliative care for more than 35 years and during this time, she has observed what is and is not working in the field and what patients and their caregivers still need. During the workshop, Dr. Meier explained that palliative care in the United States is easily accessible in two settings: hospice and hospital. Yet we know these are not the only settings where patients need to receive this kind of care. She helped audiences understand what is currently missing: data about access to community-based serious illness care. To bridge this gap, the foundation is supporting the Center to Advance Palliative Care to develop a registry of community-based serious illness programs. Under Dr. Meier’s leadership, the center will provide information to the public about local programs that offer high-quality serious illness care and track access to them nationwide.
As Dr. Meier discussed the challenges and opportunities of providing high-quality care to those with serious illness, she reminded workshop participants of the key principles, or core competencies, of palliative care within the community-based models being presented. Those core competencies include: 24/7 access to care; attention to social determinants of health; accurate identification of patients at risk; professional skill in managing pain and symptoms; use of interdisciplinary teams; and caregiver support. A discussion paper created for the workshop, Community-Based Models of Care Delivery for People with Serious Illness, further details the competencies for a high-quality program.
Challenges of providing comprehensive care
Another important topic covered during the workshop focused on providing high-quality, comprehensive care. This discussion was led by Marian Grant DNP, RN, CRNP, who at the time was the director of policy and professional engagement at the Coalition to Transform Advanced Care. The foundation is working with the coalition to develop a framework for building and implementing models of care in the community. A common challenge was raised during these discussions: how to manage workforce issues. Sachin Jain, chief executive officer of CareMore, one of the models presented in the workshop, reminded participants that “It’s about the people. The model is really only as good as the people who operate within the model.” He added that “the recruitment of passionate, mission-driven, highly capable, clinically competent, intrinsically motivated, excited clinicians is the secret sauce.”
Effectively communicating with patients
Strengthening the workforce is one of our strategic priorities. One opportunity we identified is to expand the communications skills for clinicians. Traditionally, during medical school, health care professionals are not taught how to effectively communicate with patients and their caregivers about the kind of care they want or need. By supporting VitalTalk, Atul Gawande’s Ariadne Labs, Respecting Choices, and The University of North Carolina at Chapel Hill, through its Cecil G. Sheps Center for Health Services Research, we hope to change this by giving more clinicians the skills necessary to have productive conversations with patient’s about their health goals and preferences. The foundation is also supporting research into the role of direct care workers, through a grant to Massachusetts General Hospital. In recognition of the vital role that family caregivers play as part of the team, we also launched the Family Caregiving Institute at the Betty Irene Moore School of Nursing at University of California, Davis. Part of this grant supports the creation of a suite of materials for families to promote safety and quality, plus the development of learning modules for health professionals to engage more effectively with diverse caregivers.
We'll continue to share insights from the series of workshops from the National Academy of Medicine. Future workshops include: Financing and Payment Strategies to Support High-Quality Care for People with Serious Illness and Implementation of Quality Measures for Community-Based Serious Illness Programs. You can review part I of the series here.
The workshop proceedings are available online.
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