'No control whatsoever': end-of-life care on a medical teaching unit from the perspective of family members

Abstract

Background: In our institution, about one third of annual deaths occur on the general medical teaching unit. (MTU) The average patient dies on the MTU from non-malignant disease after 4 weeks in hospital, and approximately 20% of available beds on the MTU at any time are occupied by patients who will not survive to discharge, but quality of end-of-life care on the MTU is not routinely assessed.

Aim: To identify areas for improvement in delivering high quality end-of-life care on the medical teaching unit.

Design: Qualitative study using semi-structured interviews.

Methods: Six months after the death of the patient, next of kin were sent a letter inviting participation; 75 family members were screened and 50 invitations were mailed out. Interviews were conducted in the home. Eliciting narratives and direct questioning about important aspects of end-of-life care were used.

Results: Six next of kin agreed to participate. All patients were described as seriously and chronically ill. None died of cancer. Deaths were not described as 'good', and some comments suggested that death was unexpected and not inevitable. There were few concerns about pain control or unnecessary suffering. Proactive efforts to provide prognostic information or end-of-life care were not described. Survival, not palliation, was of central importance. Consistent with this priority, satisfaction with care provided in the intensive care unit was high. Follow-up after death was desired, especially if autopsy results were available.

Discussion: Earlier discussions about treatment failure and end-of-life care, and the need for palliation, appear to be central to improving the quality of end-of-life care for patients dying on our medical teaching unit. Our results are consistent with other studies in this area.