Providing high-quality care to all patients requires clinicians, patients and, in many cases, caregivers to work together to create a shared understanding of a patients’ goals, preferences and treatment options. Understanding patients’ values and wishes is especially important in our Patient Care Program’s work to improve the experience and outcomes of patient care. It is also central to our work in serious illness care. We are supporting efforts to ensure high-need patients – those with multiple health conditions and limited ability to perform everyday tasks – have access to care that meets their needs and helps them to stay at home, as many wish to do. Knowing the importance of patient and caregiver voices, as well as the other critical policy and research issues related to serious illness, our program joined with others to support the National Academy of Medicine to establish the Roundtable on Quality of Care for People with Serious Illness. Our participation provides the opportunity to collaborate and learn from other stakeholders interested in our shared goal of ensuring high-quality, community-based care for high-need patients.  

This past December, the roundtable convened the first of a series of workshops, a one-day session titled Integrating the Patient and Caregiver Voice into Serious Illness Care. The objective of this workshop was to “examine actionable opportunities for meaningfully integrating the voices, needs, beliefs, values, traditions and practices of seriously ill adults, children, and caregivers throughout the care continuum to strengthen relationships, accelerate health system delivery reform and drive quality improvement efforts.” Participants heard from a variety of speakers highlighting research, best practices and perspectives on ensuring the voices of patients and family members are fully heard and understood as an important part of guaranteeing patients are receiving high-quality care.

Key highlights and topics included:

  • Challenges and opportunities for integrating the patient, caregiver and family voice into serious illness care;
  • Expanding access to palliative care;
  • Addressing sociocultural differences and needs in underserved communities;
  • Supporting spiritual, social and psychological needs;
  • Prioritizing communications and connections;
  • Tools that help match treatments to values; and
  • Innovations and interventions to support communication of needs, values and preference.

Among the esteemed presenters were several of our grantees who are working with us towards our goal to improve the experience and outcomes of patient care.

Rebecca Sudore, M.D., Professor at the University of California, San Francisco, spoke at the workshop on the tool she has developed to help match patient’s values with their treatment options. We have supported Dr. Sudore’s PREPARETM for your care website to provide easy-to-read, culturally appropriate, evidence-based advance directives for all U.S. states. We know that having an advance directive is one tool that helps patients and their health care providers have more meaningful conversations about a person’s desires and goals for their health. Another foundation grantee, The Conversation Project, was represented by Director Ellen Goodman. Ellen spoke to the benefits of making time to have conversations about a patient’s end-of-life goals.

Also at the workshop was Anthony Back, M.D. He spoke to the important role of clinician communication skills in working with patients and families of the seriously ill. We are funding Dr. Back and his colleagues at Vital Talk, along with the Center to Advance Palliative Care, and Ariadne Labs to train clinicians to communicate effectively with patients about their goals, preferences and care options. We believe this training is a critical piece in the path forward to ensure patient and caregivers are engaged in conversations that are meaningful and acknowledge their goals and wishes.

We heard throughout the workshop, and know through other research, that family caregivers play an essential role in not only providing care for their loved ones but also in helping the health care system understand the full picture of a patient’s health care journey. Earlier this year we funded the Betty Irene Moore School of Nursing at the University of California, Davis to establish the Family Caregiving Institute. A key component of their work will be to better understand the role of family caregivers and establish competencies and tools to help them be more adequately equipped to care for their loved ones. The institute will also focus on ways to help prepare nurses and other members of the health care team to more fully engage family caregivers.

We look forward to learning more, not only on how the patient and caregiver voice can be integrated into care, but also from the other workshops the roundtable hosts. Watch for more from us on the series of workshops from the National Academy of Medicine. Additional workshops include: Models and Strategies to Integrate Palliative Principles into Serious Illness Care; 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.


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