This study found important variability in the ways different patients with life-limiting illnesses approach the interaction of wanting support for hope and prognostic information from their clinicians. The four-diagram approach may help clinicians understand individual patients and families, but further research is needed to determine the utility of these diagrams for improving communication about end-of-life care.
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 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.
Results
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.
Conclusion
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.
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