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.

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.

A qualitative study using semi-structured interviews of palliative care patients' views on corneal donation and the timing of its discussion.

BACKGROUND: Corneal transplantation can lead to sight restoration, but globally there is a donor shortage. Many palliative care patients can donate their corneas but think they are ineligible due to comorbidities. Healthcare professionals are reluctant to broach the topic, but studies have shown that relatives would be upset if they were not offered this chance. There is no existing research involving patients. AIM: To understand the views and feelings of patients in palliative care settings towards corneal donation and explore their opinions regarding the timing of its discussion. DESIGN: This is an exploratory study based at one UK palliative care unit. A census sampling method was used. Nine participants took part in semi-structured interviews and thematic analysis was undertaken. RESULTS: Themes found included altruistic motivation and the value of sight. Family views were important, but the influence on final decisions varied. The timing of discussion relative to the illness trajectory was important; patients want to be able to engage fully in conversations and had concerns about not being able to think clearly when closer to death. Participants also associated discussion of donation as an indication of a poor prognosis. Patients prefer face-to-face discussions with someone whom they had a close rapport. Many had misconceptions about eligibility. CONCLUSION: This is the first study to engage directly with palliative care patients and to establish their views on the timing of corneal donation discussions. Patients are willing to discuss donation, and further exploration of patient views in this area should be undertaken.

Neuropathic cancer pain: prevalence, severity, analgesics and impact from the European Palliative Care Research Collaborative-Computerised Symptom Assessment study.

BACKGROUND: Neuropathic pain causes greater pain intensity and worse quality of life than nociceptive pain. There are no published data that confirm this in the cancer population. AIM: We hypothesised that patients with neuropathic cancer pain had more intense pain, experienced greater suffering and were treated with more analgesics than those with nociceptive cancer pain, and a neuropathic pain screening tool, painDETECT, would perform as well in those with cancer pain as is reported in those with non-cancer pain. DESIGN: The data were obtained from an international cross-sectional observational study. SETTING/PARTICIPANTS: A total of 1051 patients from inpatients and outpatients, with incurable cancer completed a computerised assessment on symptoms, function and quality of life. In all, 17 centres within eight countries participated. Medical data were recorded by physicians. Pain type was a clinical diagnosis recorded on the Edmonton Classification System for Cancer Pain. RESULTS: Of the patients, 670 had pain: 534 with nociceptive pain, 113 with neuropathic pain and 23 were unclassified. Patients with neuropathic cancer pain were significantly more likely to be receiving oncological treatment, strong opioids and adjuvant analgesia and have a reduced performance status. They reported worse physical, cognitive and social function. Sensitivity and specificity of painDETECT for identifying neuropathic cancer pain was less accurate than when used in non-cancer populations. CONCLUSIONS: Neuropathic cancer pain is associated with a negative impact on daily living and greater analgesic requirements than nociceptive cancer pain. Validated assessment methods are needed to enable early identification of neuropathic cancer pain, leading to more appropriate treatment and reduced burden on patients.

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.

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.

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.

Prevalence and aetiology of neuropathic pain in cancer patients: a systematic review.

Pain in cancer patients remains common and is often associated with insufficient prescribing of targeted analgesia. An explanation for undertreatment could be the failure to identify neuropathic pain mechanisms, which require additional prescribing strategies. We wanted to identify the prevalence of neuropathic mechanisms in patients with cancer pain to highlight the need for detailed assessment and to support the development of an international classification system for cancer pain. We searched for studies that included adult and teenage patients (age above 12 years), with active cancer and who reported pain, and in which a clinical assessment of their pain had been made. We found 22 eligible studies that reported on 13,683 patients. Clinical assessment methods varied, and only 14 studies reported confirmatory testing for either sensory abnormality or diagnostic lesion to corroborate a diagnosis of neuropathic pain. We calculated that the prevalence of patients with neuropathic pain (95% confidence interval) varied from a conservative estimate of 19% (9.4% to 28.4%) to a liberal estimate of 39.1% (28.9% to 49.5%) when patients with mixed pain were included. The prevalence of pain with a neuropathic mechanism (95% confidence interval) ranged from a conservative estimate of 18.7% (15.3% to 22.1%) to a liberal estimate of 21.4% (15.2% to 27.6%) of all recorded cancer pains. The proportion of pain caused by cancer treatment was higher in neuropathic pain compared with all types of cancer pain. A standardised approach or taxonomy used for assessing neuropathic pain in patients with cancer is needed to improve treatment outcomes.

Care of the dying patient in hospital.

Patients die in hospital every day, some receiving suboptimal care. This article focuses on the care of these patients in their last days specifically discussing medication review, symptom control, assisted nutrition and hydration, spiritual and religious needs, and documentation.