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Abandonment at the End of Life From Patient, Caregiver, Nurse, and Physician PerspectivesLoss of Continuity and Lack of Closure
Anthony L. Back, MD;
Jessica P. Young, MS;
Ellen McCown, BA;
Ruth A. Engelberg, PhD;
Elizabeth K. Vig, MD;
Lynn F. Reinke, PhD;
Marjorie D. Wenrich, MPH;
Barbara B. McGrath, PhD;
J. Randall Curtis, MD, MPH
Arch Intern Med. 2009;169(5):474-479.
Background Surveys and anecdotes suggest that patients and family members sometimes feel abandoned by their physicians at the transition to end-of-life care. To our knowledge, no prior studies describe abandonment prospectively.
Methods We conducted a longitudinal, qualitative study of patients, family caregivers, physicians, and nurses using a community-based sample. Using a purposive strategy, we recruited 31 physicians who identified 55 patients with incurable cancer or advanced chronic obstructive pulmonary disease, 36 family caregivers, and 25 nurses. Eligible patients met the prognostic criterion that their physician "would not be surprised" if death occurred within a year. Qualitative, semistructured interviews were performed at enrollment, 4 to 6 months, and 12 months and were audiotaped, transcribed, and coded by an interdisciplinary team. When asked to talk about hope and prognostic information, participants spontaneously raised concerns about abandonment, and we incorporated this topic into our interview guide.
Results Two themes were identified: before death, abandonment worries related to loss of continuity between patient and physician; at the time of death or after, feelings of abandonment resulted from lack of closure for patients and families. Physicians reported lack of closure but did not discuss this as abandonment.
Conclusions The professional value of nonabandonment at the end of life consists of 2 different elements: (1) providing continuity, of both expertise and the patient-physician relationship; and (2) facilitating closure of an important therapeutic relationship. Framing this professional value as continuity and closure could promote the development of interventions to improve this aspect of end-of-life care.
Author Affiliations: Fred Hutchinson Cancer Research Center (Dr Back); School of Medicine, Departments of Medicine (Drs Back, Engelberg, Vig, and Curtis and Mss Young, McCown, and Wenrich) and Medical History and Ethics (Drs Back and Curtis); School of Nursing (Drs Reinke and McGrath), Departments of Biobehavioral Nursing and Health Systems (Dr Reinke) and Psychosocial and Community Health (Dr McGrath), University of Washington, Seattle.
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