RECRUITING PALLIATIVE PATIENTS FOR A LARGE QUALITATIVE STUDY:SOME ETHICAL CONSIDERATIONS AND STAFF DILEMMAS Heather Tan, PhD, M Grief & PC Couns, 1# Anne Wilson, PhD, MN, 2 Ian Olver, MD, PhD, 3 and Christopher Barton, PhD, M Med Sc 2 This article reports on the processes of staff members in referring patients to a study that explored the experience of palliative patients, family members, and health professionals with the implementation of a family meeting model as an instrument of spiritual care. The reported qualitative study was undertaken in two large metropolitan Australian hospi- tals. Criteria other than those set by the study protocol were employed by staff members referring patients. These included subjective opinions of who was suitable to refer and percep- tions of patients’ attitudes to religion or spirituality. Such practices raise ethical issues and may compromise studies that have received ethics approval. Key words: Recruitment, palliative care, spiritual care, family meeting model (Explore 2010; 6:159-165. Crown Copyright © 2010 Published by Elsevier Inc. All rights reserved.) INTRODUCTION Recruiting patients into research studies is essential for the ad- vancement of health and medical knowledge. However, when the staff undertaking the care of the patient are also responsible for recruitment, the potential arises for an interrole conflict of interest. Staff may act as gatekeepers in the recruitment of re- search subjects, limiting access to patient participation in re- search studies from the perspectives of both researchers and potential participants. To ensure representative study sample populations, researchers must gain the ability to access culturally diverse participants. By examining common challenges to re- cruitment, some of the pitfalls of recruitment in clinical settings may be avoided. Through careful planning, gaining knowledge of the setting, and inventive recruitment methods, the popula- tion under investigation can be represented in applied research. Recruiting participants for palliative care research studies has been reported as difficult. Issues such as gatekeeping by ethics committees or by protective health professionals, 1-3 misjudg- ment of patient interest, 3,4 and health practitioner discomfort with promoting research 4 have been found to impact on recruit- ment rates and sample size. Consequently, there are implica- tions for the applicability of study results 1 in addition to denying the right of patients who meet approved study protocol selection criteria the opportunity to decide for themselves about partici- pation may have ethical implications and has been discussed in light of the concepts of “soft” and “hard” paternalism. 4,5 In this study, recruiting issues were explored in the context of a large qualitative study investigating the use of a family meeting model as an instrument of spiritual care for palliative patients and their family members. When the focus of the palliative care research is a particularly sensi- tive area such as spirituality, other factors may also add to recruiting challenges. For example, the problems of defining spirituality, its rela- tionship to religiosity, and of measuring outcomes of spiritual care interventions still remain despite a reported increase of 600% in related publications in the period 1993 to 2002. 6 Spirituality is described here “as the web of relationships that gives coherence to our lives. Religious belief, may or may not be a part of that web.” 7 This web of relationships may include relationships with places, things, ourselves, significant oth- ers, and with a power beyond ourselves. 8 The experience of palliative care patients, their family mem- bers, and staff of the study locations, in the implementation of Murphy’s family meeting model 9 as a method for providing spiritual care, were explored. This model is designed to facilitate the holistic care of the whole family unit, including spiritual care as it has been defined above. Murphy describes the family meet- ing as being a sacred event, a time for making peace, discharging old resentments, giving thanks, and saying goodbye. Telling the story of the illness, of life together, and of the joys and the sorrows along the way, is fundamental to this meeting model. Its main features are explained in Table 1. The two participating services were both associated with large metropolitan teaching hospitals in an Australian city. They offered similar services, such as inpatient care for palliative patients, com- munity services for patients living at home, and specialist consul- tancy services to associated privately operated hospices. The following inclusion criteria were approved for the selec- tion of patients for referral to the family meeting study: 1 School of Population Health and Clinical Practice, University of Ad- elaide, Adelaide, Australia; currently at School of Nursing and Mid- wifery, Monash University, Melbourne, Australia 2 School of Population Health and Clinical Practice, University of Ad- elaide, Adelaide, Australia 3 Cancer Council Australia, Sydney, Australia This study was supported by the Royal Adelaide Hospital/Institute of Medical and Veterinary Science Research Committee, grant 9471 awarded to Heather Tan. # Corresponding Author. Address: PO Box 527, Frankston, Victoria 3165, Australia e-mail: heather.tan@med.monash.edu.au 159 Crown Copyright © 2010 Published by Elsevier Inc. All rights reserved. EXPLORE May/June 2010, Vol. 6, No. 3 ISSN 1550-8307/$36.00 doi:10.1016/j.explore.2010.03.008 ORIGINAL RESEARCH