NIH – End-of-Life and Palliative Care Health Literacy: Improving Outcomes in Serious, Advanced Illness (R01 and R21 – Clinical Trial Optional)

January 2, 2018 by School of Medicine Webmaster

The following description was taken from the R01 version of this FOA.

Inadequate end-of-life and palliative care (EOLPC) health literacy is a significant barrier to receiving high-quality care for individuals living with serious, advanced illnesses. Palliative care includes patient and family-centered care that seeks to anticipate, prevent, relieve or reduce disease-related symptoms across the continuum of a patient’s illness. Palliative care may integrate the emotional, psychological, social, and physical aspects of care with a focus on enhanced quality of life. Historically, palliative care referred to treatment available to patients at home and enrolled in hospice. More recently, palliative care has become available to acutely ill patients and its meaning has evolved to encompass comprehensive care that may be provided along with disease-specific, life-prolonging treatment. End-of-life care refers to care that meets the patient’s medical, physical, psychological, spiritual and social needs when facing an advanced, life-limiting illness. Hospice care is an end-of-life care delivery system that emphasizes comfort through symptom management and psychosocial support without life-prolonging treatment, to enhance the quality of life, increase communication, and decrease care burden for both patients with a limited life expectancy and their families.

Health literacy is defined as the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions (National Academies 2004, p. 2) and may be influenced by factors such as education level, age, hearing-impaired status, and race/ethnicity. Health literacy is multi-faceted and includes the ability to obtain (via reading or listening), understand/interpret within the context of one’s own perspective, communicate with health care providers to confirm interpretations or correct misunderstandings, and then to utilize information to make appropriate decisions regarding end-of-life and/or palliative care. In a 2012 survey, 83% of Americans did not know what palliative care is (California Health Care Foundation, 2012). The 2014 IOM Dying in America report called for public education and engagement concerning end-of-life care to build support for institutional and provider practices that ensure that this care is high-quality and sustainable; to raise public awareness of care options in the final phase of life, the needs of caregivers, and the hallmarks of high-quality care; and to motivate and facilitate advance care planning and meaningful conversations with families, caregivers, and clinicians about values, goals, and informed preferences for care. (National Academies 2014, S-14). The next step in palliative care research is to determine how individuals comprehend palliative and/or end-of-life care options, how they process and understand the language of their health care provider, and what elements are necessary to create meaningful conversations between individuals, their families and health care providers within heterogeneous populations.

Advanced illnesses requiring complex management regimens, significant symptoms, and/or treatment with substantial side effects necessitate health literate communication and comprehension of end-of-life and palliative care information. Therefore, the purpose of this FOA is to stimulate research to determine the key barriers to effective end-of-life and palliative care (EOLPC) health literacy, and to create novel strategies/interventions/models of care to improve palliative care health literacy, ultimately to improve outcomes in individuals with serious, advanced illness and their families and caregivers. Unfortunately, most people do not communicate in a health literate manner what palliative care is, what role it can play near the end of life, and do not have a clear concept of terms such as caregiver, surrogate decision maker, or proxy. The recent National Academies of Sciences, Engineering and Medicine’s Roundtable Health Literacy and Palliative Care Workshop, set the charge 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” (National Academies 2016, p. 61). EOLPC literacy is a dynamic process that involves not just the skills of the individual, but also the provider (Paasche-Orlow & Wolf 2007). Therefore, EOLPC literacy strategies should focus not only on the one-way provision of information to patients and families, but should include interactions between patients, families and providers, as well as the extent of provider knowledge of palliative care and its principles. Research to this point has focused primarily on the basic science of advance care planning and communication, the need now is to determine optimal strategies for implementation within highly heterogeneous populations. By effectively increasing palliative care health literacy, individuals will better comprehend the extent of an illness, necessary treatments, and how to live with serious illness as comfortably as possible. This will increase autonomy and the ability to give informed consent for treatment, and/or avoid unwanted care at the end of life.

Research Objectives

Research projects may include studies which consider variables that impact EOLPC health literacy such as: race, culture/ethnicity, socioeconomic status, geographic location, language, physical/intellectual abilities, family structures, community roles in decision-making and care, age, diagnosis, prognosis, and disease trajectory.

Research projects of interest include, but are not limited to those that:

  • Identify key challenges and barriers to the provision of a palliative care environment that promotes health literacy, including a better understanding of strategies to increase individual and family/caregiver understanding of topics such as (but not limited to):
    • Illness-specific information to include (if available) etiology, diagnosis, prognosis, expected trajectory of decline
    • Treatment options
    • Advanced symptom control
    • Palliative and/or end-of-life care options (including respite care for caregivers)
    • Available support services for individuals and their families/caregivers
    • Advance care planning
  • Focus on understanding and improving communication between seriously ill individuals, their families/caregivers, and health professionals with the objective of achieving goal-concordant care.
  • Promote development of strategies to identify individuals that lack understanding of end-of-life and/or palliative care to aid in the determination of individual needs, and the development of approaches to ensure the delivery of EOLPC is appropriate for individuals and their families/caregivers.
  • To design, test, and evaluate interventions that improve EOLPC literacy to improve outcomes for individuals with serious, advanced illness and their families and caregivers, across all populations.
  • Adapt existing strategies aimed at improving understanding of EOLPC care options and support services, so that they may be relevant to individuals of diverse backgrounds.

Types of studies may include innovative methods or approaches such as qualitative, mixed methods, observational, quasi-experimental, and experimental with focus on individual- and family-centered outcomes. It is strongly encouraged that the investigative teams be interdisciplinary and include nurse scientists and early stage investigators. Investigators are also encouraged to consider using existing palliative care research networks, such as the Palliative Care Research Cooperative Group, to carry out small, multi-site trials when appropriate.

Research not appropriate for this funding announcement includes:

  • Studies that do not have a clear connection to either immediate or future patient and/or family-centered health (physical or psychosocial/emotional) outcomes specific to end-of-life and palliative care.
  • Studies in which the primary purpose is to develop EOLPC materials, educational programs, or training.

Deadlines:  standard dates and standard AIDS dates apply


Filed Under: Funding Opportunities