Abandonment at the end of life from patient, caregiver, nurse, and physician perspectives: loss of continuity and lack of closure

Abstract

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.