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In their own words: Patients and families define high-quality palliative care in the intensive care unit*

Nelson, Judith E. MD, JD; Puntillo, Kathleen A. RN, CNS, DNSc, FAAN; Pronovost, Peter J. MD, PhD, FCCM; Walker, Amy S. MA; McAdam, Jennifer L. RN, PhD; Ilaoa, Debra RN; Penrod, Joan PhD

doi: 10.1097/CCM.0b013e3181c5887c
Clinical Investigations

Objective: Although the majority of hospital deaths occur in the intensive care unit and virtually all critically ill patients and their families have palliative needs, we know little about how patients and families, the most important “stakeholders,” define high-quality intensive care unit palliative care. We conducted this study to obtain their views on important domains of this care.

Design: Qualitative study using focus groups facilitated by a single physician.

Setting: A 20-bed general intensive care unit in a 382-bed community hospital in Oklahoma; 24-bed medical-surgical intensive care unit in a 377-bed tertiary, university hospital in urban California; and eight-bed medical intensive care unit in a 311-bed Veterans' Affairs hospital in a northeastern city.

Patients: Randomly-selected patients with intensive care unit length of stay ≥5 days in 2007 to 2008 who survived the intensive care unit, families of survivors, and families of patients who died in the intensive care unit.

Interventions: None.

Measurements and Main Results: Focus group facilitator used open-ended questions and scripted probes from a written guide. Three investigators independently coded meeting transcripts, achieving consensus on themes. From 48 subjects (15 patients, 33 family members) in nine focus groups across three sites, a shared definition of high-quality intensive care unit palliative care emerged: timely, clear, and compassionate communication by clinicians; clinical decision-making focused on patients' preferences, goals, and values; patient care maintaining comfort, dignity, and personhood; and family care with open access and proximity to patients, interdisciplinary support in the intensive care unit, and bereavement care for families of patients who died. Participants also endorsed specific processes to operationalize the care they considered important.

Conclusions: Efforts to improve intensive care unit palliative care quality should focus on domains and processes that are most valued by critically ill patients and their families, among whom we found broad agreement in a diverse sample. Measures of quality and effective interventions exist to improve care in domains that are important to intensive care unit patients and families.

From the Division of Pulmonary, Critical Care, and Sleep Medicine (JEN, ASW), and Hertzberg Palliative Care Institute (JEN), Mount Sinai School of Medicine, New York, NY; Critical Care/Trauma Program (KAP, JLM), Department of Physiological Nursing, University of California, San Francisco, San Francisco, CA; Department of Anesthesiology/Critical Care Medicine, Nursing, and Surgery (PJP), Johns Hopkins University School of Medicine, Baltimore, MD, and Department of Health Policy & Management (PJP), Johns Hopkins Bloomberg School of Public Health, Baltimore, MD; Department of Nursing (JLM), Dominican University of California, San Rafael, CA; Palliative Care Services (DI), Norman Regional Hospital, Norman, OK; Center for the Study of Health Care Across Systems and Sites of Care (JP), James J. Peters VA Medical Center, Bronx, NY; Department of Geriatrics and Adult Development (JP), Mount Sinai School of Medicine, New York, NY.

This work was supported by R21-AG029955 from the National Institute on Aging (NIA). Dr. Nelson received an Independent Scientist Award from NIA, K02-AG024476. Dr. Penrod was supported by the Department of Veterans Affairs, Veterans Health Administration, Health Services Research and Development Service (project no. REA 08-260). Dr. Nelson and Dr. Pronovost served as consultants to the Voluntary Hospital Association, Inc., a national cooperative of not-for-profit, community-based hospitals, for development of ICU palliative care quality indicators.

Dr. Nelson had full access to all of the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.

Preliminary data from this study were presented in abstract form at the 2008 American Thoracic Society International Conference (Nelson J et al. Am J Resp Crit Care Med 2008; 177:A517).

The study was conducted at Mount Sinai Medical Center in New York, NY; University of California Medical Center in San Francisco, CA; Norman Regional Hospital in Norman, OK; and the James J. Peters VA Medical Center in Bronx, NY.

The views expressed in this article are those of the authors and do not necessarily reflect the position or policy of the Department of Veterans Affairs. The authors have not disclosed any potential conflicts of interest.

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© 2010 by the Society of Critical Care Medicine and Lippincott Williams & Wilkins