Evaluation of a palliative care service: problems and pitfalls

Abstract

Objective: To evaluate a palliative care home support team based on an inpatient unit.

Design: Randomised controlled trial with waiting list. Patients in the study group received the service immediately, those in the control group received it after one month. Main comparison point was at one month.

Setting: A city of 300,000 people with a publicly funded home care service and about 200 general practitioners, most of whom provide home care.

Main outcome measures: Pain and nausea levels were measured at entry to trial and at one month, as were quality of life for patients and care givers' health.

Results: Because of early deaths, problems with recruitment, and a low compliance rate for completion of questionnaires, the required sample size was not attained.

Conclusion: In designing evaluations of palliative care services, investigators should be prepared to deal with the following issues: attrition due to early death, opposition to randomisation by patients and referral sources, ethical problems raised by randomisation of dying patients, the appropriate timing of comparison points, and difficulties of collecting data from sick or exhausted patients and care givers. Investigators may choose to evaluate a service from various perspectives using different methods: controlled trials, qualitative studies, surveys, and audits. Randomised trials may prove to be impracticable for evaluation of palliative care.