What constitutes quality of family experience at the end of life? Perspectives from family members of patients who died in the hospital.

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Most palliative care efforts focus on assessing and improving the quality of life and quality of care for patients. Palliative care views the family as the unit of care; therefore, excellent comprehensive palliative care should also address the needs of the family and the caregiver(s). While the recent literature has offered detailed descriptions of caregiving needs in the home setting, it is crucial to describe the needs of family members who provide care for patients with advanced illness in an inpatient setting, where family members serve as the key intermediaries and decision makers. Therefore, we sought to define the relevant aspects of quality of experience for families of hospitalized patients.We convened a series of focus groups to identify the domains important for the quality of experience of dying patients' family members. Participants included bereaved family members of patients who had died at a Veterans Administration (VA) or private academic medical center. We conducted four in-depth follow-up interviews to probe for additional details and validate our interpretation of the focus group findings.Participants (n = 14) ranged in age from 46 to 83, with a mean of 62. All were female; 64% were Caucasian, 21% African American, and 14% did not report their ethnicity. Content analysis yielded 64 attributes of quality of family experience constituting eight domains: completion, symptom impact, decision making, preparation, relationship with healthcare providers, affirmation of the whole person, post-death care, and supportive services.Our data have implications for clinical guidance in assisting family members in the inpatient palliative setting, which often includes patient incapacity for communication and decision making. They suggest the importance of developing corresponding methods to assist families with the tasks involved with life completion, being prepared for a crisis and imminent death, and post-death care. Provider communications and relationships are central to the processes of meeting the clinical needs of family members. Our findings should inform the development of measures to assess family experience.





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Steinhauser, Karen E, Corrine I Voils, Hayden Bosworth and James A Tulsky (2015). What constitutes quality of family experience at the end of life? Perspectives from family members of patients who died in the hospital. Palliative & supportive care, 13(4). pp. 945–952. 10.1017/s1478951514000807 Retrieved from https://hdl.handle.net/10161/29955.

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Karen E. Steinhauser

Professor in Population Health Sciences

Dr. Steinhauser's primary interests are end-of-life care, medical sociology and patient-provider relationships. Specifically, she investigates the composition and measurement of the quality of life for patients and their families at the end of life. Dr. Steinhauser is a Health Scientist with the Center for Health Services Research in Primary Care, VA Medical Center, Durham; Professor, Department of Population Health Science and Medicine; Senior Fellow with the Duke University Center for Aging; Associate Chief for Research, Duke Palliative Care, and Director, Duke Residency Professional Development Coaching Program. 

Karen E. Steinhauser, PhD is a social scientist dedicated to improving quality of life of patients, families, and providers during serious illness.  She is a Health Scientist with the Center for Health Services Research in Primary Care, VA Medical Center, Durham and Professor, Department of Medicine, Duke University Medical Center, Senior Fellow with the Duke University Center for Aging, and a former VA Career Development Awardee. 

Karen Steinhauser, PhD, is Professor, Departments of Population Health Sciences and Medicine, Duke University Medical Center and Senior Fellow with the Duke University Center for Aging and Health Scientist with the Center for Health Services Research in Primary Care, VA Medical Center, Durham. Her research is dedicated to improving patient and family psychosocial and spiritual care, in serious illness. She has developed measurement tools to assess patient and family quality of life as well as psychosocial interventions to improve the experience of serious illness for patients and those who care for them. Dr. Steinhauser's research has used qualitative and qualitative methods, observational, trial and implementation research.  Her latest work includes: developing a measure to assess the spiritual needs in palliative care, and addressing clinician resilience in palliative care. She serves as Associate Chief of Research for Duke Palliative Care, Director of the Duke Residency Professional Development Coaching program and Vice Chair of Faculty Development for Population Health Sciences. She has been a long-term member of AAHPM, having served on the research committee and being the 2015 Awardee for Excellence in Scientific Research in Palliative Care. She is the Director of Duke’s Residency Professional Development Coaching Program and Vice Chair for Faculty Development, Department of Population Health Sciences

Area of expertise: Palliative Care, Qualitative Research

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