• Harriëtte J van Esch, Arianne Stoppelenburg, Lia van Zuylen, Carin Cd van der Rijt, and Agnes van der Heide.
• Department of Medical Oncology, Erasmus MC Cancer Institute, University Medical Center Rotterdam, Rotterdam, The Netherlands.
• Palliat Med. 2022 Dec 1; 36 (10): 155215581552-1558.

BackgroundPlacebo-controlled trials can provide evidence to inform end-of-life care, but it is contested whether asking dying patients to participate in such trials is morally justifiable. To investigate the experiences of these patients is even more complex. Therefore, proxy assessments by relatives can be a good alternative.AimTo explore the experience of participating in a placebo-controlled trial at the end of life from the perspective of bereaved relatives.DesignMixed-method study, including questionnaires and interviews.Setting/ParticipantsThe SILENCE study was a randomized, double-blind, placebo-controlled trial on the efficacy of scopolamine butylbromide to prevent death rattle. The study was performed in six inpatient hospice facilities. Patients were asked to participate at admission in the hospice. Three months after the death of the patient, bereaved relatives were invited to fill in a questionnaire and to participate in an interview. One hundred four questionnaires were completed and 17 relatives were interviewed.ResultsFourteen percent of the relatives participating in the questionnaire study considered the participation of their loved one in research a bit burdensome and 10% considered it a bit stressful. Seventeen percent thought that it was a bit burdensome for the patient. Eighty-three percent considered participation in this type of research (very) valuable. The in-depth interviews showed that patients and relatives jointly decided about participation in this double-blind placebo-controlled medication trial. Relatives generally respected and felt proud about patients' decision to participate.ConclusionThe large majority of bereaved relatives experienced the participation of their dying love one in this RCT as acceptable and valuable.

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