Exploring palliative care provision for recipients of allogeneic hematopoietic stem cell transplantation who relapsed

Abstract

Purpose/objectives: To quantify the characteristics of patients who die in the hospital from relapse after allogeneic hematopoietic stem cell transplantation (alloHSCT), explore palliative care integration and end-of-life (EOL) care, and benchmark standards of care.

Design: Retrospective chart review cohort study; a cross-sectional survey design guided a national survey.

Setting: A chart review was conducted in a large tertiary hospital in Australia. The survey was distributed to leading alloHSCT centers in Australia and New Zealand.

Sample: The chart review sample group was patients in the hematology department who had received an alloHSCT, relapsed, and died in the hospital (N = 40). The survey sample group was the most advanced nurse involved in patient care at each facility (N = 14).

Methods: A quantitative data collection tool created for chart review, as well as patient notes written by the physician, were examined. The quantitative data collection tool was created for the survey, which was conducted via email or telephone.

Main research variables: The chart review measured patient demographics, palliative care integration, EOL care, and symptoms. Survey topics included services available, referrals to palliative care services, EOL discussions, and symptom management.

Findings: About half of the patients were seen by the palliative care service. Many patients experienced severe symptoms in the terminal phase. Survey participants felt EOL discussions were left until the terminal phase. Participants believed early palliative care integration was beneficial for patients and their family.

Conclusions: The chart review demonstrated late integration of palliative care and poor standards of EOL care. Survey results reiterated this and reflected that nurses are supportive of earlier integration of palliative care and improving EOL care.

Implications for nursing: Palliative care should be integrated earlier, and nursing roles have the potential to address unmet needs for these patients.

Keywords: advance practice nurses; allogeneic hematopoietic stem cell transplantation; end-of-life; palliative care; recurrence; relapse.