Family Attitudes, Actions, Decisions and Experiences Following Implementation of Deemed Consent and the Human Transplantation Act (Wales)
2017; Wolters Kluwer; Volume: 101; Linguagem: Inglês
10.1097/01.tp.0000525149.68544.8a
ISSN1534-6080
Autores Tópico(s)Palliative Care and End-of-Life Issues
ResumoIntroduction The Human Transplantation Act (Wales) introduced a ‘soft opt out’ system of organ donation on 1.12.15. Citizens are encouraged to make their organ donation decision known during their lifetime. In order to work, the Act and media campaign need to create a context whereby organ donation becomes the norm, and create a mechanism for people to behave as intended (formally register their decision; consider appointing a representative; convey their donation decision to their families and friends, or do nothing – deemed consent). In addition, family members/appointed representatives need to be able to put their own views aside to support the decision of their loved one. The aim of this study is to evaluate initial implementation and impact on affected families and appointed representatives. Methods Mixed-method co-productive study undertaken with National Health Service Blood and Transplant, and patient/public representatives. The study was designed to collect information on all cases who met specified criteria (>18 yrs, deceased person normally resident in Wales and died in Wales or England) whose family were approached between 1/12/15-31/6/17). Data types: NHS BT routinely collect anonymised audit data on all cases; Specialist Nurses in Organ Donation complete an anonymised questionnaire for all cases documenting their perception of the families understanding of the Act, media campaign, and outcome of the donation approach; Questionnaires and depth interviews are being completed with any family member or appointed representative (minimum 50 cases). Additional focus groups and interviews will ascertain the perspectives of a minimum of 23 Specialist Nurses in Organ Donation and managers. Anonymised publicly available donation and registration activity reports in Wales provide additional context. Results Data collection is on target and schedule. The study will report in September 2017. Anonymised routinely collected audit data for 199 cases and depth data from families of 50 cases has thus far been collected (Feb 2017). Data explains how and why people responded as intended or not and illuminates the key tipping points in the process that influence the donation decision either way. Conclusion This depth study will help establish whether the Act and implementation strategy is working as intended. Fiona Wellington – Head of Operations NHSBT for supporting the study. Christian Brailsford – NHSBT provided advice and support to agree a mutual data sharing agreement and negotiate NHS ethics and NHSBT RINTAG and NHSBT R&D processes. Pat Vernon (Policy Lead Welsh Government), Ian Jones (Research and Evaluation Lead) Caroline Lewis (Organ Donation Policy Manager) provided a Government perspective and shared research carried out prior to implementation of the Act. Donald Fraser – Lead of the Wales Kidney Research Unit supported development of the funding application and serves as independent Chair of the steering group. Jo Mitchell – research support officer North West NHSBT Team: Ben Armstrong, Adam Barley Angela Campion-Sheen, Laura Ellis-Morgan, Rebecca Gallagher, Sharon Hallam, Phil Jones, Andrew Mawson, Abi Roberts, Tracey Rhodes, Helen Bullock, Andrea Jones, Kathryn Alletson, Jane Monks, Emma Thirlwall, Dawn Lee, Nicky Hargreaves, Lisa Welsh, Gill Drisma, Sue Duncalf. South Wales NHSBT Team: Angharad Griffiths, Lucy Barnes, Charlotte Goodwin, Guy Heathcote, Gail Melvin, Michael Tobin, Lisa Morgan, Nicola Newbound, Michelle Powell Stephen Regan, Fiona Rogers, Susie Cambray, Kathy Rumbleow, Lynne Woolcocks, Janet Woodley, Beth Moss, Louise Colson. NHSBT Staff: Sian Griffin (Consultant Nephrologist, Department of Nephrology and Transplantation) Katja Empson, Sam Sandow, Carl Stephenson (Clinical Leads Organ Donation) Francesca Stevens (Tissue Services NHSBT), Maggie Stratton (PR Officer NHSBT). Jeanette & CRUSE Bereavement Care – who provided leaflets signposting bereavement support for participants. Patient and Public representatives: Sarah Thomas, Janet Thickpenny, Gethin Rhys, Michael Rhys, Maria Mesa, Roon Adams, Michael Houlston, Maria Battle, Anna Bates for providing guidance and advice on the focus of the study. Janet Williams and Gloria Owens for providing advice and feedback on processes, participant facing documents and the detailed funding application. Patient and Public representative organisations: Flintshire Deaf Association, Llanelli Multi Cultural Network, Big Lottery, Churches Together in Wales, Women Connect First, BAWSO, Race Equality First, Believe, Donor Family Network, Rita’s Café for helping to set up the patient and public network and supported the study proposal. Gareth Wyn Roberts - Consultant Nephrologist, Cardiff and Vale University Health Board provided detailed advice on clinical processes and the new Act. Catherine Robinson – Former Head of School of Social Sciences, Bangor University, supported submission of the funding application following high level discussions and commented on a section of the application. References 1. Human Transplantation Act (2013) Wales http://www.legislation.gov.uk/anaw/2013/5/contents/enacted. 2. Aylward M, Phillips C, Howson H. (2013) Simply Prudent Healthcare – achieving better care and value for money in Wales – discussion paper. 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