"I have a lot of pills in my bag, you know": Institutional Norms in the Provision of Hope in Phase 1 Clinical Cancer Trials
(English)Manuscript (preprint) (Other academic)
Hope of a miracle cure is often an important motive for participating in phase 1 clinical cancer trials. Communication of hope may stimulate patients to participate and may enhance their quality of life; however, it may also deprive them of an opportunity to spend the remainder of their lives as they wish. Much depends on the kind of hope involved. This article outlines three forms of hope entertained by trial participants that, in various ways, are triggered, enhanced or modified by institutional norms within health care. This has normative as well as clinical implications; the information threshold for informed consent to enter phase 1 trials should be higher than that for consenting to medical treatment or entering randomised, controlled, phase 3 trials, clarifying the demarcation between clinical treatment and research. A simultaneous care model that integrates both trial participation and palliative care could and should also be offered; this is in line with the recommendations of the WHO, which state that palliative care should be applicable early in the course of illness.
Clinical trials phase 1, cancer, palliative, hope
Medical and Health Sciences
Research subject Bioethics
IdentifiersURN: urn:nbn:se:uu:diva-252879OAI: oai:DiVA.org:uu-252879DiVA: diva2:811909