Emotion and Palliative Care
The NCI Basic Biobehavioral and Psychological Science Branch is committed to facilitating a greater understanding of affective and decision science as they relate to palliative care for cancer. Palliative care is broadly construed to include not only end-of-life care but also concurrent supportive care as adjuvant to treatment and/or in service of improved symptom management and quality or life. Early palliative care has been demonstrated to improve quality of life in those with cancer, and preliminary evidence suggests early palliative care intervention holds promise for improving length of life. Professional societies have endorsed concurrent and early palliative care consultation among those diagnosed with cancer, yet barriers to referral and acceptance of referral remain.
Palliative care is a highly emotional clinical care context, but historically there has been little connection between basic affective and decision science perspectives to inform research and practice in palliative cancer care. Thus, research is necessary to better elucidate the role of emotion and other types of affect (e.g., stress, mood) in decision-making processes among both providers and patients. By fostering research leading to improved understanding of provider and patient decision-making processes, the burden of cancer can be reduced through the development and dissemination of improved interventions.
- Identify existing gaps in knowledge at the nexus between basic affective and decision science and applied palliative care science and practice by engaging scientists and clinicians at the NCI and the general research community;
- Facilitate high quality proof-of-concept research projects that clearly demonstrate the benefits of research at the intersection of affective and palliative care science, building on existing knowledge in the field and promoting high quality basic, clinical and translational research at this area of scientific intersection; and
- Setting a scientific research agenda for affective and decision science and palliative care for cancer, highlighting important opportunities to improve cancer palliative care by elucidating affective and decisional mechanisms contributing to its referral and uptake.
Palliative Care Needs of Individuals with Rare Advanced Diseases and Their Family Caregivers (R01 & R21)
January 8, 2020
This opportunity announcement seeks to expand knowledge and increase the evidence base for palliative care in advanced rare diseases, including rare cancers, and to improve physical and psychosocial well-being and quality of life among seriously ill individuals and their family caregivers. Projects that examine decision-making processes and outcomes are encouraged.
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The goals of the Affective and Decision Science and Palliative Care for Cancer workshop series are to bring together scientists from these areas to: identify research gaps, opportunities, and challenges; foster research collaborations; and identify ways that NCI can foster research at this area of intersection that would improve palliative care research and practice while advancing affective and decision science in this context.
The first workshop took place in November 2013. This workshop paired affective and decision scientists with palliative care scientists and clinicians, focusing on research gaps and opportunities related to palliative care in the context of treatment; end-of-life palliative care; pediatric, adolescent, and young adult palliative care; and palliative care for side effects and late effects of cancer treatments. Invitees were Drs. Marie Bakitas (University of Alabama), Susan Block (Dana-Farber Cancer Institute), Linda Cameron (University of California, Merced), Paul Han (Maine Medical Center), Pamela Hinds (Children’s National Hospital), Mara Mather (University of Southern California), Samuel McClure (Stanford University), Ellen Peters (Ohio State University), Valerie Reyna (Cornell University), and Jennifer Temel (Harvard University).
The second workshop took place in May 2015. This workshop highlighted the subcontracted proof-of-concept projects (described in detail below), shedding insight on both successes and challenges in bridging the applied clinical research of palliative care with basic affective and decision sciences. In addition, this workshop contributed to NCI strategic and scientific planning by further elucidating gaps, opportunities, and challenges for research at this intersection, and by garnering feedback about ways in which NCI can facilitate this type of research.
Affective Science and Palliative Care Decision-Making Projects
BBPSB has awarded two subcontracts to facilitate proof-of-concept research at the intersection of affective science and palliative care decision-making. These projects each involve collaboration between a scientist with expertise in emotion and decision-making and a scientist with expertise in palliative care.
The purpose of the first project (Principle Investigators: Drs. William Pirl, Massachusetts General Hospital; Jennifer Lerner, Harvard University) is to examine oncologists’ affective and decisional processes for administering chemotherapy at the end of life. This project involves administering self-reported assessments to assess oncologists’ emotional traits and emotional exhaustion, and examining the association among these and administration of chemotherapy to patients with metastatic cancers at the end of life and analyzing audio recordings of oncology visits to examine communication about chemotherapy at the end of life.
The purpose of the second project (Principle Investigators: Drs. Paul Han, Maine Medical Center; Ellen Peters, Ohio State University) is to elucidate psychological factors that affect physician communication of prognostic information to cancer patients at the end of life. This project involves a factorial experiment using a hypothetical clinical vignette conducted among a cohort of practicing Family Medicine physicians.
National Cancer Institute Affective and Decisional Processes in Palliative Care Research Network
Emotion and decision-making are important elements in palliative care. In this context, palliative care is defined as an extra layer of support for patients and informal caregivers, regardless of whether administered in combination with curative care or at the end-of-life. It is designed to encompass any care that is provided to improve quality of life, control symptoms, side effects, and pain and provide end-of-life support associated with cancer.
However, affective science and decision-science have not been fully engaged in tackling barriers to effective palliative care referral, acceptance, and administration throughout the cancer continuum. Because palliative care is one of the emerging research priorities of NCI, a network of clinical and basic science researchers has been assembled to collectively identify gaps in knowledge and generate empirical questions. This network will deliberate to discuss affective and decision-making processes that contribute to communication, receipt of information, deliberation about palliative care options, and adjustment to palliative care as they affect patients, caregivers, and health professionals.