Abstract

Palliative care is a medical specialty and philosophy of care that focuses on reducing suffering among patients with serious illness and their family members, regardless of disease diagnosis or prognosis. As critical illness or moderate to severe pulmonary disease confers significant disease-related symptom burdens, palliative care and palliative care specialists can aid in reducing symptom burden and improving quality of life among these patients and their family members. The objective of this article is to review the existing gaps in evidence for palliative care in pulmonary disease and critical illness and to use an interdisciplinary working group convened by the National Institutes of Health and the National Palliative Care Research Center to develop a research agenda to address these gaps. We completed a narrative review of the literature concerning the integration of palliative care into pulmonary and/or critical care. The review was based on recent systematic reviews on these topics as well as a summary of relevant articles identified through hand search. We used this review to identify gaps in current knowledge and develop a research agenda for the future. We identified key areas of need and knowledge gaps that should be addressed to improve palliative care for patients with pulmonary and critical illness. These areas include developing and validating patient- and family-centered outcomes, identifying the key components of palliative care that are effective and cost-effective, developing and evaluating different models of palliative care delivery, and determining the effectiveness and cost-effectiveness of palliative care interventions. The goal of this research agenda is to encourage researchers, clinicians, healthcare systems, and research funders to identify research that can address these gaps and improve the lives of patients with pulmonary and critical illness and their family members.

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