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Ethical dilemmas in palliative care. Assessing the success of drug treatment of terminal secretions
Hirsch C, Marriott J, Wilson K & Faull C Pharmacy Practice Research Group, Aston University, Birmingham B4 7ET
Introduction Although an evidence based approach is accepted in palliative care, evidence is often unavailable to support therapeutic decisions owing to the difficulties of conducting research in this group of patients1. In particular recruitment and attrition are recognised problems.2 This research forms part of an ongoing study in which the treatment of respiratory secretions in the terminal phase of palliative care is being evaluated. Resistance to the proposed methodology was encountered when presented to ethical committee and nursing staff. We present an evaluation of the underlying attitudes and concerns of healthcare staff and the resulting modifications of the proposed study methodology.
Method The proposed method to assess drug effect was developed in discussion with palliative care physicians, pharmacy and research nurse, bereavement councillors and with reference to previous published and unpublished work. No change to treatment policy within the hospice was involved. A summary of the proposed method was then presented in two different Hospices at a series of 6 group discussions (5-20) held at convenient times to healthcare staff that would be involved in the study. The aim of the group discussion was to inform healthcare staff of the proposed study protocol and to record spontaneous feedback concerning the study, which would involve nursing co-operation for recruitment and monitoring. Staff feedback was transcribed and analysed using Nud.ist. At the time of these group discussions, ethical committee approval was pending from MREC.
Results The attendees at the group discussions included junior and senior nursing staff. Medical staff also attended one session. Overall support for the study was high, however, the following key issues were identified as problematic for the nursing staff.
- Consent � when and by whom this should be obtained.
- The use of sound recording by CD mini-disk as a quantitative measure of respiratory sound was deemed contentious by most nurses.
- Concern about effects on relatives both during the study periods and post study.
Conclusion The findings from the discussion group analysis raise issues central to nursing that should be fundamental considerations when designing study methods in palliative care. Ethical issues that concerned nurses were not identical with those raised by Ethics Committee. The multidisciplinary group discussion analysis promoted methodological design changes that have facilitated and enabled palliative care research and highlight the importance of Ethical considerations in this group of patients3.
References
- Higginson J. Evidence based palliative care. BMJ. 1999;319:462-463
- Jordhay M. Challenges in palliative care research; recruitment, attrition and compliance: experience from a randomised controlled trial. Pall Med 1999;13:299-310
- Casarett D Are special ethical guidelines needed for palliative care research? J Pain Symp Manage 2000;20:130-139
Presented at the HSRPP Conference 2001, Nottingham
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