National Academy of Sciences – Health Literacy and Palliative Care: Workshop Summary

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“Palliative care provides a specialized, holistic approach to provid- ing 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 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 exam- ined 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.

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“Palliative care provides a specialized, holistic approach to provid- ing 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 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 exam- ined 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.

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