Information needs about palliative care and euthanasia: A survey of patients in different phases of their cancer trajectory

Abstract

Objective: We assessed information provision and information needs about illness course, treatments, palliative care and euthanasia in cancer patients.

Methods: Cancer patients consulting a university hospital (N=620) filled out a questionnaire. Their cancer related data were collected through the treating oncologist. This study is performed in Belgium, where "palliative care for all" is a patient's right embedded in the law and euthanasia is possible under certain conditions.

Results: Around 80% received information about their illness course and treatments. Ten percent received information about palliative care and euthanasia. Most information about palliative care and euthanasia was given when the patient had a life expectancy of less than six months. However, a quarter of those in earlier phases in their illness trajectory, particularly those who experienced high pain, fatigue or nausea requested more information on these topics.

Conclusion: Many patients want more information about palliative care and euthanasia than what is currently provided, also those in an earlier than terminal phase of their disease.

Practice implications: Healthcare professionals should be more responsive, already from diagnosis, to the information needs about palliative care and possible end-of-life decisions. This should be patient-tailored, as some patients want more and some patients want less information.

Keywords: End-of-life care; Information needs; Information provision; Oncology; Palliative care; Patient reported outcomes; Survey study.