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Introduction1
“Palliative care provides a specialized, holistic approach to providing medical care for people with very serious illnesses, and the focus of palliative care is on providing relief from symptoms and improving the quality of life for patients,” said Bernard Rosof, Chief Executive Officer of the Quality in Healthcare Advisory Group, as an introduction to the topic of this workshop on health literacy and palliative care.2 “It is our hope that this workshop will help to further disseminate knowledge about the need for and the benefits of palliative care, and in particular, about how important it is to organize and deliver this care in a health literate manner.”
In general, said Rosof, low health literacy is a barrier to receiving high-quality health care, but this is particularly salient for people living with serious or chronic illnesses requiring complex management regimens, having significant symptoms, or involving treatment with significant side effects. The ability to understand the scope of the illness, what is necessary to treat the illness, and how to live with serious illness as comfortably as
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1 The planning committee’s role was limited to planning the workshop, and the workshop summary has been prepared by the workshop rapporteur as a factual summary of what occurred at the workshop. Statements, recommendations, and opinions expressed are those of individual presenters and participants, and are not necessarily endorsed or verified by the National Academies of Sciences, Engineering, and Medicine, and they should not be construed as reflecting any group consensus.
2 This section is based on the presentation by Bernard Rosof, Chief Executive Officer of the Quality in Healthcare Advisory Group, and the statements are not endorsed or verified by the National Academies of Sciences, Engineering, and Medicine.
possible is a critical factor in determining patient treatment outcomes and quality of life.
To explore the relationship between palliative care and health literacy, and the importance of health literate communication in providing high-quality delivery of palliative care, the National Academies of Sciences, Engineering, and Medicine’s Roundtable on Health Literacy convened this 1-day public workshop featuring presentations and discussions that examined the effect of low health literacy on all aspects of palliative care. The statement of task for this workshop is below:
An ad hoc committee will plan and conduct a public workshop to explore the impact of health literacy on palliative care. The workshop will feature invited presentations and discussions of the effect of low health literacy on all aspects of palliative care. The topic may encompass but will not be limited to end-of-life care and may also cover shared decision making, chronic disease and pain management, care models and other areas of interest within palliative care. It will also include the interaction between patients and patient families and providers, as well as the knowledge of palliative care and its principles among providers. The committee will define the specific topics to be addressed, develop the agenda, select and invite speakers and other participants, and moderate the discussions. An individually authored summary of the presentations and discussions at the workshop will be prepared by a designated rapporteur in accordance with institutional guidelines.
Rosof noted that the workshop was designed to include the interaction between patients, their families, and providers, as well as the knowledge of palliative care and its principles among providers. The workshop featured invited presentations and discussions on topics that included the role of interpersonal communication between health care team members and patients and their families, the need to train health care team members on appropriate communication skills, and the role of integrated care teams in providing palliative care. The workshop also provided examples of successful palliative care programs from a variety of settings.
ORGANIZATION OF THE SUMMARY
The workshop (see Appendix A for the agenda) was organized by an independent planning committee in accordance with the procedures of the Academies. The planning committee’s members were Cindy Brach, Marian Grant, Renee McLeod-Sordjan, Diane Meier, Yael Schenker, and Paul Schyve. This publication summarizes the discussions that occurred throughout the workshop and highlights the key lessons presented, practical strategies, and the needs and opportunities for improving health literacy in the
United States. Chapter 2 provides an overview of the link between palliative care and health and the case for integrating palliative care principles and practices across the entire spectrum of health care for individuals with a serious illness. Chapter 3 discusses interpersonal communication and the patient experience and includes the perspective of a patient’s spouse who had to serve as the primary caregiver with little external support. Chapter 4 explores the need to improve the communication skills of health team members and some of the strategies that can be used to improve those skills. Chapter 5 lays out the case for delivering palliative care using integrated teams that include family members, social workers, nurses, and spiritual advisors. Chapter 6 provides examples of successful programs for delivering palliative care in four different settings. Chapter 7 covers the Roundtable’s reflections on the key lessons learned at this workshop.
In accordance with the policies of the Academies, the workshop did not attempt to establish any conclusions or recommendations about needs and future directions, focusing instead on issues identified by the speakers and workshop participants. In addition, the organizing committee’s role was limited to planning the workshop. The workshop summary has been prepared by workshop rapporteur Joe Alper as a factual summary of what occurred at the workshop.
