The potential for eye donation from hospice and palliative care clinical settings in England: a retrospective case note review of deceased patients' records.

There is a need to identify additional routes of supply for ophthalmic tissue in the UK. This paper reports the findings from a national study exploring the potential for eye donation (ED) from three Hospice Care (HC) and three Hospital Palliative Care Services (HPC) in England. The objectives addressed in this paper are i.) to establish the size and describe the clinical characteristics of the potential eye donor population across six clinical sites; ii.) to identify challenges for clinicians in applying the standard ED criteria for assessing patient eligibility. Retrospective assessment of 1199 deceased patient case notes, 601 Hospice Care and 598 Hospital Palliative Care services, against current eye donation criteria. Clinicians' assessments were then evaluated against the same criteria. by specialists based at the National Health Service Blood and Transplant Tissue Services division (NHSBT-TS). Results of the assessment and evaluation are reported as descriptive statistics (numerical data). Free-text comment boxes facilitated clarification and/or justification of review and evaluation decisions. 46% (n = 553) of 1199 deceased patients' notes were agreed as eligible for eye donation (Hospice care settings = 56% (n = 337); Palliative care settings = 36% (n = 216). For all eligible cases (n = 553) the option of ED was recorded as being raised with family members in only 14 cases (3%). Significant potential exists for eye donation from the clinical sites in this study. This potential is not currently being realised.

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.

Breathlessness in palliative care: a practical guide.

Breathlessness is a common symptom for patients with terminal illness and can be challenging to manage. Breathlessness is acknowledged to be an interaction between body and mind. There are a variety of pharmacological and non-pharmacological therapies that can be beneficial. The holistic assessment of the breathlessness patient should enable delivery of a tailored package of care focused on relief of symptoms.

Obstacles to corneal donation amongst hospice inpatients: a questionnaire survey of multi-disciplinary team member's attitudes, knowledge, practice and experience.

BACKGROUND: Corneal donation is a sight restoring procedure. Internationally demand exceeds supply. It is a tissue that palliative care patients may be able to donate, yet donation rates from this group are low. AIM: To explore the attitudes, knowledge, practice, and experience of corneal donation from hospice staff with direct clinical contact with patients. DESIGN: Anonymous paper questionnaire with fixed response and free text components. SETTING/PARTICIPANTS: Questionnaires were delivered to 704 clinical multi-disciplinary team members in 12 hospices within the Yorkshire Palliative Medicine Regional Learning Group, UK. RESULTS: 434 completed questionnaires were received. Most respondents believed that corneal donation is a rewarding opportunity of which patients and families should be aware, but over 90% of respondents rarely or never raised the topic, and only 33% felt that it was part of their role. Key reasons for not engaging in discussions were: concerns about the impact of the discussion on patients and families, a belief held by hospice staff that they lacked essential knowledge, negative experiences of corneal donation, concern about enucleation, a perception that donation is not part of hospice culture, low levels of training and the personal significance of eyes. CONCLUSIONS: Despite positive staff attitudes towards corneal donation, many barriers to discussing donation were identified, which may reduce donation rates. This could be improved by local policies encompassing further education, prompts in documentation and availability of leaflets.

Primary thromboprophylaxis for hospice inpatients: who needs it?

Primary thromboprophylaxis (PTP) is a Department of Health priority in England. The NICE guidelines agree that PTP is inappropriate in the dying patient, but should be considered for those with reversible pathology. In the light of continued variation and uncertainty in UK hospice practice, we assessed PTP prescribing in three hospices. Case notes were reviewed from consecutive patients admitted before (300 patients) and after (350 patients) implementation of the Pan Birmingham Cancer Network (PBCN) venous thromboembolism prophylaxis (VTE) prevention guidelines. Just under half (43%; 40%) of patients had a contraindication to anticoagulation and PTP. Whilst just under a tenth (8.6%; 8.7%) in each group had a temporary increased risk of VTE, considerably fewer (3.6%; 6.3%) had a temporary increased risk of VTE without contraindication to PTP. Patients receiving PTP increased slightly from 1% to 3.6% and documentation of PTP decisions increased from 5% to 81%. Whilst the PBCN VTE tool is a useful tool to tailor an approach for this complex patient group, many questions remain. Clinical trials that include patients with advanced disease with relevant outcome measures are needed to help inform the clinicians who care for them.