Eye donation in hospice and hospital palliative care settings: perceptions, practice, and service development needs - findings from a national survey.

OBJECTIVES: New routes for supply of eye tissue are needed in the UK to support transplant surgery and medical research. Hospice care (HC) and Hospital-based Palliative care (HPC) services represent potential supply routes. This paper reports findings from the survey arm of the Eye Donation from Palliative and Hospice Care-Investigating potential, practice preference and perceptions study (EDiPPPP), objectives of which were to: i) Investigate existing practice in relation to eye donation across HC and HPC settings; ii) identify perceptions of HCPs toward embedding eye donation into routine end of life care planning; iii) investigate the informational, training, or support needs of clinicians regarding eye donation. DESIGN: Online survey of UK-based HC and HPC clinicians, distributed through professional organisations (Association of Palliative Medicine (UK); Hospice UK). PARTICIPANTS: One hundred fifty-six participants completed (63% HC; 37% HPC-8% response rate, of n = 1894 approached). RESULTS: Majority of participants (63%, n = 99) supported raising eye donation (ED) with patients and families and agreed that ED should be discussed routinely with eligible patients. However, 72%, (n = 95) indicated that staff within their clinical setting did not routinely discuss the option of ED in end-of-life care planning conversations with the majority of participants reporting that the option of ED was not 'routinely discussed in multi-disciplinary team or other meetings. CONCLUSIONS: Despite significant support, ED is not part of routine practice. Attention to barriers to embedding ED and reducing knowledge deficits are urgently needed to increase the supply of eye tissue for use in transplant operations.

12†The potential for eye donationfrom hospice and palliative care clinical settings in England - a retrospective case notes review of deceased patient records.

BACKGROUND: There is a need to identify additional routes of supply for ophthalmic tissue in the UK due to deficits between supply and demand. In response to this need the NIHR funded study, Eye Donation from Palliative and Hospice Care: Investigating Potential, Practice, Preference, and Perceptions) (EDiPPPP) project was developed in partnership with NHSBT Tissue Services ( now Organ Tissue Donation and Transplantation). AIM: This presentation will report findings from work package one of EDiPPPP which aimed to: scope the size and clinical characteristics of the potential eye donation (ED) population via a large-scale, multi-site retrospective case notes review across England establishing: the size of the potential ED population; describe the clinical characteristics of the potential ED population and identify challenges for clinicians in applying the standard ED criteria for assessing patient eligibility. RESULTS: Retrospective review of 1200 deceased patient case notes (600 HPC; 600 HPCS) by reviewers (healthcare professionals) at research sites against current ED criteria were then evaluated by specialists based at the National Health Service Blood and Transplant Tissue services (NHSBT-TS). Note review established that 46% (n=553) of 1200 deceased patients notes were agreed as eligible for eye donation (total cases Hospice care settings = 56% (n=337); Palliative care settings = 36% (n=216) with only 1.2% of potential donors referred to NHSBT-TS for eye donation (Hospice care settings = 1.2% (n=4); Palliative care settings = 1.3% (n=3).Application of the eye donation criteria resulted in an 81% agreement rate outcome for all sites (HPC = 79.2%; HPCS = 82.8%). If cases where there was a difference of assessment but where NHSBT evaluation indicated eligibility are included (n=113) the potential donor pool rises from 553 (46.1% total cases) to 666 (56%) eligible cases. CONCLUSIONS: Significant potential exists for eye donation from the clinical sites in this study. This potential is not currently being realised. In view of the predicted increase in need for ophthalmic tissue it is essential that the potential route to increase the supply of ophthalmic tissue demonstrated in this retrospective note review is accessed. The presentation will conclude with recommendations for service development.

33†NHSBT tissue and eye services clinical support nurse team: advanced nursing practice.

NHS Blood and Transplant (NHSBT) Tissue and Eye Services (TES) save and improve the lives of thousands of patients every year.The Clinical Support Nurse Team (CSNT) within TES is an example of registered nurses working at an advanced level, making professionally autonomous decisions for which they are accountable.The concept of nurses working at this level began with a pilot study in 2012 under a robust governance system and change process within NHSBT. The development and progress of the team has also been reviewed by NHSBT Clinical Audit.The CSNT currently comprises two band 7 nurses and a band 8a manager who work together to safely assess and authorise donated tissue for transplant. There are plans to expand the team in 2022 and to ensure that the work is underpinned by a suitable academic framework that reflects the level of clinical responsibility. The CSNT work in conjunction with TES medical consultants who provide education, guidance and governance.The team is required to use complex reasoning, critical thinking, reflection and analysis to inform their assessment and clinical judgement.CSNT practice is guided by the Donor Selection Guidelines set by the Joint United Kingdom (UK) Blood Transfusion and Tissue Transplantation Services Professional Advisory Committee (2013). These guidelines stipulate contraindications to tissue donation on which the CSNT bases clinical decisions to ensure the safety of the recipients of any donated tissue by ruling out the chances of contracting any transmissible illness or transplanting tissue of compromised quality.Although a large component of the TES CSNT workload is to authorise donor files from deceased donors there are also living donation programmes. CSNT also review the Autologous/Allogeneic Serum Eye Drop Programme (ASE/AlloSE). This involves reviewing clinical requests made by ophthalmologists for serum eye drop options.This is a brief summary of how CSNT nurses apply their expert knowledge and skills to a broad range of Clinically challenging and complex situations.

13†NHSBT Tissue and eye services: the role of the hospital development nurse practitioner.

NHS Blood and Transplant (NHSBT) Tissue and Eye Services (TES) save and improve the lives of thousands of patients every year.The roles and responsibilities of the nurses working in TES are diverse. Across the TES supply chain nursing roles are pivotal.They range from raising awareness of tissue donation and creating robust referral systems through to skilled communication with recently bereaved families over the telephone, as well as advanced nursing practice in clinical decision-making regarding suitability for transplantation and research.In the UK, around 25 million people have registered to donate organs and tissues. However, there is poor understanding around the tissue-donation process.Hospital development nurse practitioners (HDNPs) provide a professional link between service Providers/users and TES so that effective working partnerships can be developed. HDNPs ensure that there is a professional link from TES to support, educate and advise a wide range of health professionals about tissue donation. They are a visible and respected presence in the areas within which they work and continuously build on these successful working partnerships and contractual agreements to increase donor referrals.Consistent findings from a global body of research for organs and tissues over the past 15 years shows that there are key factors that influence family decision making (Sque et al, 2008; Siminoff et al, 2010; Long-Sutehall et al, 2012; Sque et al, 2018).Evidence suggests that key factors include:• Failure by health professionals to recognise potential donors• Reluctance of health professionals to talk about tissue donation• Family/next of kin not agreeing to donation due to concerns about the donation process (for example, the post donation appearance of the donor) or personally held views.The role of the HDNP aims to overcome some of these barriers and work towards increasing the number of referrals of potential tissue donors. This includes creating robust referral systems, raising awareness, educating, and sharing information about tissue donation so that patients and their families can make an informed choice about donating tissue for transplant and/or research. HDNPs work closely with selected NHS trusts at strategic levels to implement referral systems. This includes working alongside senior colleagues such as chief executives, directors of nursing, end-of-life-care specialists and coroners.HDNPs work closely with selected trusts in developing automatic referral systems whereby 100% of adult deaths are referred so nurses are able to reach many more families to discuss the option of donating tissue.

10†Eye donation in palliative and hospice care settings: patient views and missed opportunities!

Eye donation in Palliative and Hospice care settings: patient views and missed opportunities. BACKGROUND: There is a global shortage of donated eye tissue for use in sight saving and sight restoring operations such as corneal transplantation. In the UK the Royal National Institute of Blind People (RNIB) report that over two million people are currently living with sight loss with this figure predicted to rise to approx. four million by 2050. Patients who die in palliative and hospice care settings could potentially donate eye tissue, however, the option of eye donation is not routinely raised in end-of-life planning discussions. Research evidence suggests that health care professionals (HCP) are reluctant to discuss eye donation as they perceive it as something that will distress patients and family members. AIM: This presentation will share findings regarding the views of patients and carers, including: their feelings and thoughts about the option of eye donation being raised with them; who they think should raise this issue; when this option should be discussed and who should be included in the discussion. FINDINGS: Findings are drawn from the NIHR funded national study: Eye Donation from Palliative and Hospice care contexts: investigating Potential, Practice, Preference and Perceptions (EDiPPPP) in partnership with three palliative care and three hospice care settings in England. Findings indicate high potential for eye donation but very low levels of identification of potential donors; low levels of approach to patients and family members about the option of eye donation; lack of inclusion of eye donation in end-of-life care planning and/or clinical meeting discussions (i.e. Multi-Disciplinary Team (MDT) meetings) and very limited awareness raising initiatives or activity to inform patients and carers of the option of eye donation. CONCLUSION: It is imperative that patients who would want to be a donor are identified and assessed for eligibility for donation as part of high-quality end of life care. It is clear from studies reported over the past 10 years that not a lot has changed regarding the identification, approach, and referral of potential donors from palliative and hospice care settings, and this is due in part to perceptions held by HCPs that patients would be unwilling to engage in discussions regarding the option of eye donation in advance of their death. This perception that is not substantiated by empirical research.

Family refusal of eye tissue donation from potential solid organ donors: a retrospective analysis of summary and free-text data from the UK National Health Service Blood and Transplant Services (NHS-BT) National Referral Centre (1 April 2014 to 31 March 2017).

OBJECTIVES: Long-standing undersupply of eye tissue exists both in the UK and globally, and the UK National Health Service Blood and Transplant Service (NHSBT) has called for further research exploring barriers to eye donation. This study aims to: (1) describe reported reasons for non-donation of eye tissue from solid organ donors in the UK between 1 April 2014 and 31 March 2017 and (2) discuss these findings with respect to existing theories relating to non-donation of eyes by family members. DESIGN: Secondary analysis of a national primary data set of recorded reasons for non-donation of eyes from 2790 potential solid organ donors. Data analysis including descriptive statistics and qualitative content analysis of free-text data for 126 recorded cases of family decline of eye donation. SETTING: National data set covering solid organ donation (secondary care). PARTICIPANTS: 2790 potential organ donors were assessed for eye donation eligibility between 1 April 2014 and 31 March 2017. RESULTS: Reasons for non-retrieval of eyes were recorded as: family wishes (n=1339, 48% of total cases); medical reasons (n=841, 30%); deceased wishes (n=180, 7%). In >50% of recorded cases, reasons for non-donation were based on family's knowledge of the deceased wishes, their perception of the deceased wishes and specific concerns regarding processes or effects of eye donation (for the deceased body). Findings are discussed with respect to the existing theoretical perspectives. CONCLUSION: Eye donation involves distinct psychological and sociocultural factors for families and HCPs that have not been fully explored in research or integrated into service design. We propose areas for future research and service development including potential of only retrieving corneal discs as opposed to full eyes to reduce disfigurement concerns; public education regarding donation processes; exploration of how request processes potentially influence acceptance of eye donation; procedures for assessment of familial responses to information provided during consent conversations.

Results of the clinical donor case and quality system case workshops of the European Association of Tissue Banks annual meeting 2009.

The European Association of Tissue Banks (EATB) Donor Case Workshop and Quality System Case workshop are forums held within the program of the EATB Annual Congress. These workshops offer an opportunity to discuss and evaluate approaches taken to challenging situations, regarding donor selection and quality issues, and strengthen the professional tissue banking and regulatory networks across Europe. This report reflects some of the discussion at the congress workshops and also subsequent correspondence between the various individuals who submitted cases for discussion. The cases presented to the workshops demonstrate that the findings, their interpretation, deducted actions and preventive measures in tissue banks are not predictable. The varied responses and lack of consensus corroborate this and clearly indicate that operating procedures cannot comprehensively cover or prepare for all eventualities. For many of the issues raised there is a lack of information in the published literature. The workshops actively engage participants, representing a wide array of international expertise, in an informal, secure and enjoyable setting, which facilitates learning from peers and provides potential solutions to those submitting cases. By publishing a summary of the discussions, we hope to reach a wider audience and to stimulate individuals to undertake full literature reviews or research on some of the discussed subjects.

Evaluation of the experiences of family members whose deceased relative donated tissues at the NHSBT dedicated donation facility in Speke, Liverpool.

Donation of human tissue for transplant and research has historically been facilitated within the hospital mortuary. In 2006 NHSBT Tissue Services opened the Dedicated Donation Facility [DDF], the first facility in the UK dedicated to the donation of tissues under strictly controlled conditions. Nine family members who had agreed and experienced the transfer of their deceased relative to the DDF for tissue donation participated in a service evaluation applying qualitative data collection methods and framework analysis. The evaluation aimed to: understand the decision-making process of family members who agreed to their deceased relative being moved to the DDR for tissue donation; identify any concerns that family members had; gather the views of family members regarding the 'service' provided to them by NHSBT Tissue Services. Family members were unaware of the possibility of tissue donation. The process of reasoning behind both agreeing to tissue donation and movement of the deceased to the DDF by family members was fundamentally, 'the benefit to others' that tissue donation would bring, and fulfilling the wishes of the deceased [when known]. Family decision making was facilitated by: (i) a positive rapport with the requester, (ii) satisfaction with the information provided to the family about what would happen, and (iii) trust in that what was being said would happen. Family members were satisfied with the service provided to them by Tissue Services and confident in agreeing to the transfer of their deceased relative to the dedicated facility for tissue donation.