Objective: Euthanasia was legally regulated in Belgium in 2002. During the preparation of practice guidelines, we explored the communication needs of both patients and GPs in relation to strains to continuity of care of patients wishing to die at home.
Method: In this qualitative study based on grounded theory, the perspective of the patients was explored by in-depth interviews with 17 terminally ill (but fully informed about their prognosis) patients. The perspective of the caregivers was explored by a quality circle and 4 focus groups with GPs, specialists, nurses and relatives.
Results: Patients had a rather clear opinion concerning euthanasia, but seldom made it explicit to their GP. Patients felt inhibited to comminicate by fear of starting discussion too early and offending the GP. Patients perceived their GPs as reluctant to discuss euthanasia, and sensed a lack of intensity of contact in the terminal phase. On the contrary, caregivers perceived patients as reluctant to express wishes and as preferring to rely on physicians. Caregivers emphasised the difficulty of tactful communication on euthanasia and a lack of experience. Their major fear was discord with the family. Shared by patients and caregivers were hindrance by the absence of a legal framework and confusion between euthanasia and other ELD.
Conclusions: Failing communication regarding euthanasia could be improved by taking even discrete hints by the patients seriously, by caregivers initiating the discussion, and by explicit discussions between caregivers and patients about the problems of continuity of care in the terminal phase. This research should be enhanced by parallel semi-structured interviews on congruencies and discordences between patients and caregivers.