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.

Eye donation from palliative and hospice care contexts: the EDiPPPP mixed-methods study.

Background: Over 2 million people in the United Kingdom are living with sight loss with costs to the United Kingdom economy reported as £4.34 billion annually. Conditions that lead to sight loss and impaired vision can be treated if eye tissue is available for corneal transplantation, reconstructive surgery and research into eye diseases.

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

Unlabelled: 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.

7 Current practice of healthcare professionals in hospice and hospital palliative care settings related to eye donationas part of end-of-life care: a national survey.

Background: Around 53% of the world's population have no access to the benefits of sight saving and sight restoring transplantation surgery due to a short fall in the supply of ophthalmic tissue that is only available via eye donation (ED). In England the National Health Services Blood and Transplant (NHSBT) seeks to have a consistent and sustained supply of eye tissue to satisfy current demand, however, historically and currently there is gap between supply and demand. Data reports that between April 2020 - April 2021, 3,478 corneas were donated a 37% decrease on the previous year figure of 5,505 corneas.

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.

The decision-making process of transferring patients home to die from an intensive care unit in mainland China: A qualitative study of family members' experiences.

Objectives: To map the decision-making process of family members involved in transferring a critically ill patient home to die from an intensive care unit in mainland China and to explore the experiences of those family members.

Design: A constructivist qualitative study.

Setting: One hospitals intensive care unit in Southeast China.

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.

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.

Transferring home to die from critical care units: A scoping review of international practices.

Purpose: To identify and characterise the international practices of transferring a dying patient home to die from critical care units.

Materials And Methods: A systematic scoping review following the Joanne Briggs Institute methodology was applied searching fifteen data sources to identify papers published in English and Chinese from 1970 to 2019.

Results: Of the 28 papers meeting eligibility criteria 19 were published in the West and seven in China.

Barriers and Facilitators to Eye Donation in Hospice and Palliative Care Settings: A Scoping Review.

The need for eye tissue for use in sight saving and sight restoring surgery is a global issue. Approximately 53% of the world's population has no access to interventions such as corneal transplantation. Low levels of eye tissue impact on service providers such as National Health Service Blood and Transplant who aim to achieve a weekly stock of 350 eyes but do not meet this target.

Exploring nurses' knowledge, attitudes and feelings towards organ and tissue donation after circulatory death within the paediatric intensive care setting in the United Kingdom: A qualitative content analysis study.

Objective: This study explored nurses' knowledge, attitudes and feelings towards donation after circulatory death identifying these domains as barriers and facilitators to nurses effectively undertaking their role in the donation after circulatory death donation process.

Design: A single-phase qualitative study design.

Setting: One paediatric cardiac intensive care unit in a tertiary paediatric hospital in England.

Parents' experiences of requests for organ and tissue donation: the value of asking.

Objective: A proportion of children die, making them potentially eligible to be organ/tissue donors. Not all are approached for donation, and experiences of those parents are not well understood. The objective was to investigate to what extent organ and tissue donation (OTD) is discussed as part of end-of-life care and to explore parents' and healthcare professionals' (HCPs) experiences.

Bereaved donor families' experiences of organ and tissue donation, and perceived influences on their decision making.

Purpose: To elicit bereaved families' experiences of organ and tissue donation. A specific objective was to determine families' perceptions of how their experiences influenced donation decision-making.

Methods: Retrospective, qualitative interviews were undertaken with 43 participants of 31 donor families to generate rich, informative data.

Vigilant attentiveness in families observing deterioration in the dying intensive care patient: A secondary analysis study.

Background: Family support in intensive care is often focussed on what information is communicated to families. This is particularly important during treatment withdrawal and end of life care. However, this positions families as passive receivers of information.

Transferring patients home to die: what is the potential population in UK critical care units?

Objectives: Most people when asked, express a preference to die at home, but little is known about whether this is an option for critically ill patients. A retrospective cohort study was undertaken to describe the size and characteristics of the critical care population who could potentially be transferred home to die if they expressed such a wish.

Methods: Medical notes of all patients who died in, or within 5 days of discharge from seven critical care units across two hospital sites over a 12-month period were reviewed.

Transferring critically ill patients home to die: developing a clinical guidance document.

Background: With preferred place of care at the time of death a key consideration in end of life care, it is important that transfer home be considered for critically ill patients who want this as part of their end of life care. However, there is limited guidance available to inform the transfer of critically ill patients home to die.

Aims And Objectives: To develop clinical guidance on the practice of transferring patients home to die for doctors and nurses in critical care.

A national survey exploring views and experience of health professionals about transferring patients from critical care home to die.

Background: Transferring critically ill patients home to die is poorly explored in the literature to date. This practice is rare, and there is a need to understand health care professionals' (HCP) experience and views.

Objectives: To examine (1) HCPs' experience of transferring patients home to die from critical care, (2) HCPs' views about transfer and (3) characteristics of patients, HCPs would hypothetically consider transferring home to die.

Doctors' and nurses' views and experience of transferring patients from critical care home to die: a qualitative exploratory study.

Background: Dying patients would prefer to die at home, and therefore a goal of end-of-life care is to offer choice regarding where patients die. However, whether it is feasible to offer this option to patients within critical care units and whether teams are willing to consider this option has gained limited exploration internationally.

Aim: To examine current experiences of, practices in and views towards transferring patients in critical care settings home to die.

Research with bereaved families: a framework for ethical decision-making.

Theoretical debates about the nature of grief and bereavement draw attention to the sensitivity of carrying out research with bereaved people, the possible threats that this may pose and the ethical considerations required to ameliorate potentially damaging outcomes. The authors of this article present a framework for ethical decision-making that has been successfully developed in the context of research with bereaved families. The discussion focuses on application and evaluation of the framework during research with family members who were approached about the donation of a deceased relative's organs and/or tissues for transplantation.

Challenges in transition from intervention to end of life care in intensive care: a qualitative study.

Background: Providing quality end of life care is a challenging area in intensive care practice. The most demanding aspect for doctors and nurses in this setting is not the management of care at end of life per se, but facilitating the transition from active intervention to palliation and finally, end of life care. Whilst there is understanding about some aspects of this transition, recognition of the complex and inter-related processes that work to shift the patient's trajectory from cure to end of life care is required.

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.

Negotiated dying: a grounded theory of how nurses shape withdrawal of treatment in hospital critical care units.

Background: The process of withdrawal of treatment in critical care environments has created ethical and moral dilemmas in relation to end of life care in the UK and elsewhere. Common within this discourse is the differing demands made on health professionals as they strive to provide care for the dying patient and family members. Despite reports that withdrawal of treatment is a source of tension between those nurses and doctors involved in the process, the role of the nurse in facilitating withdrawal of treatment has received relatively little attention.

Conversations in end-of-life care: communication tools for critical care practitioners.

Background: Communication skills are the key for quality end-of-life care including in the critical care setting. While learning general, transferable communication skills, such as therapeutic listening, has been common in nursing education, learning specific communication tools, such as breaking bad news, has been the norm for medical education. Critical care nurses may also benefit from learning communication tools that are more specific to end-of-life care.

International dialogue on end of life: challenges in the UK and USA.

Aim: The aim of this paper was to increase international collaboration on end of life care (EoLC) in critical care. Objectives included highlighting key challenges for critical care nurses in EoLC through a transcribed interview between a clinician, an educationalist and a researcher who all hold an EoLC focus.

Background: EoLC continues to hold high profile within international health care arenas, including critical care units.