Arch Intern Med. 2009 March 9; 169(5): 474–479.
Abandonment at the end of life from patient and clinician perspectives Loss of continuity and lack of closure
Anthony L Back,* Jessica P Young, Ellen McCown, Ruth A Engelberg, Elizabeth K Vig, Lynn F Reinke, Marjorie D Wenrich, Barbara B McGrath, and J Randall Curtis Author information ? Copyright and License information ?
The publisher's final edited version of this article is available at Arch Intern Med See commentary in volume 12 on page 128.
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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.
We conducted a longitudinal, qualitative study of patients, family caregivers, physicians and nurses using a community-based sample. Using a purposive recruitment strategy, we identified 31 physicians, who identified 55 patients with incurable cancer or advanced chronic obstructive pulmonary disease (COPD), 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 semi-structured interviews were performed at enrollment, 4–6 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.
Two themes were identified: (1) before death, abandonment worries related to loss of continuity between patient and physician; (2) 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.
The professional value of nonabandonment at the end of life consists of two different elements: (1) providing continuity, of both expertise and the patient-clinician 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.
Expert guidelines on caring for patients at the end of life emphasize the importance of not allowing a patient to feel abandoned, especially when the care plan includes withdrawal of disease-modifying treatment.1–5 Nonabandonment has been cited as a primary tenet of medicine and a key value in professionalism.6, 7 However, limited empirical data describe how physicians put this value into practice. One study of intensive care unit family conferences observed that clinicians missed opportunities to respond to family concerns about nonabandonment,8 although when present, expressions of nonabandonment correlated with higher family satisfaction.9
Despite the professed importance of nonabandonment to end of life care, surveys show that patients and families still experience abandonment around the time of death.10–12 Anecdotal descriptions provide vivid first-person accounts,13, 14 but medical literature does not explain the discrepancy between physicians’ stated professional values, and patients’ and families’ experiences of abandonment.
We found that patients with incurable cancer and advanced COPD who were asked to talk about hope and their views of the future independently brought up the subject of abandonment. We then observed abandonment prospectively in this longitudinal study from the perspectives of patients, their family caregivers, physicians, and nurses.