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. Supply of eye tissue (only available via eye donation) is currently insufficient to meet demand; therefore, new routes are needed. Hospice and hospital-based Palliative Care Services have been reported as potential donation sources of this tissue. Objectives: To: (1) scope the size and clinical characteristics of the potential eye donation population from research sites; (2) map the donation climate of each research site; (3) identify factors that enable or challenge service providers to consider the option of eye donation from a local and national perspective; (4) identify service users' views regarding the option of eye donation and the propriety of discussing eye donation; and (5) develop and pilot an empirically based intervention designed to change behaviours in relation to eye donation. Design: A 36-month mixed-methods, multicentre study undertaking three work packages. Settings: Three hospice care and three hospital-based palliative care services situated in the North, Midlands and the South of England (one service of each type per region). Participants: Work package 1 - 105 service providers. Work package 2 - 62 service users, and 156 service providers in the national survey. Work package 3 - 21 expert consultees (patient and public involvement, cross discipline). Data sources: Scoping review, retrospective note review, qualitative interviews/focus groups, participant observation, secondary analysis of primary data, national survey, transparent expert consultation. Results: Potential: The retrospective notes review demonstrated that of 1199 deceased patients' notes, 553 (46%) patients met the criteria for eye donation (56%, n = 337 in hospice care service settings and 36%, n = 216 in hospital palliative care service). Practice: Less than 4% of all cases agreed as eligible for donation had been approached or referred for eye donation. Eye donation is not currently an embedded practice at local and national levels. Perceptions: Service providers were motivated to discuss eye donation but lacked opportunity and capability. Service users were willing and able to hold conversations about eye donation but were not aware of the option and had not had the option discussed with them. Preferences: Service users wanted to be offered the option of eye donation, and service providers wanted bespoke education and training related to eye donation. Evaluation of the developed intervention STEPS - Support Toolkit for Eye donation in Palliative care Settings will follow implementation of the full intervention (expected to begin in October 2022). Limitations: Due to the significant impact of the COVID-19 pandemic on clinical sites, partner organisations and national service providers, only two elements of the developed intervention have been pilot tested for proof of concept and the response rate to the national survey was low (8%). Conclusions: Significant potential exists for eye donation from hospice care and hospital palliative care services; however, individual and organisational behaviour as well as information system-based changes are needed to maximise this potential. Future work: Evaluation of the STEPS - Support Toolkit for Eye donation in Palliative care Settings; Research exploring the wider public knowledge and views regarding eye donation; research exploring the use of language by National Health Service Blood and Transplant-Tissue and Eye Services in their public-facing infographics, communications and campaigns (specifically the use of the term eye donation). Trial registration: This trial is registered as ISRCTN14243635: Eye donation from palliative care and hospice care settings. Funding details: This project was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (17/49/42) and will be published in full in Health and Social Care Delivery Research; Vol. 11, No. 20. See the NIHR Journals Library website for further project information.

The Royal National Institute of Blind people report that over 2 million people in the United Kingdom are living with sight loss. This number is predicted to double to nearly 4 million by 2050. Conditions that lead to sight loss and impaired vision can be treated if eye tissue is available through, for example corneal transplantation, reconstructive surgery and research into eye diseases. However, the problem is that there is not enough eye tissue available to meet current need. Patients under the care of hospice care services and hospital palliative care services who, due to a cancer diagnosis, are unable to donate other organs or tissues, may be able to donate their eyes. To explore potential for eye donation in these settings, we looked at the clinical notes from patients who died in the previous 2 years to see if they could potentially have been a donor. We also interviewed patients and carers seeking their views regarding 'if', 'when' and 'how' a conversation about eye donation should take place within end-of-life care planning. We also asked healthcare professionals (via interviews and a national survey) about their views regarding eye donation being part of end-of-life planning, and what they saw as the key barriers to this becoming a routine practice. We found that many patients are eligible for eye donation, but very few are asked about this option, and that patients indicated they wanted this option raised with them so that they could make decisions about donation. A review of patient notes, healthcare professional interviews and survey responses indicate that eye donation is not part of the current routine clinical practice. Our work presents a clear case for a change to current practice so that patients who wish to donate are offered this opportunity as a part of routine end-of-life care, and that changes in the current practice require specific training initiatives and institutional support.

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 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. METHODS: Thirteen adult family members (of ten patients) who participated in decision-making related to transferring a relative home to die from the intensive care unit were purposively selected. Data were collected via interviews and analysed applying thematic analysis. FINDINGS: A two-stage decision-making process was identified. Family decision-making was mediated by factors including: accepting the impending death and hope that the patient would not die; time pressures in which decisions had to be made, and the challenges of meeting cultural expectations of a home death. Transfer home was a family-centred decision constrained by a gender-based hierarchy restricting the involvement of different family members. CONCLUSION: The stages and key factors in the decision-making process of family members when involved in transferring a patient home to die from an intensive care unit in China are rooted and informed by cultural expectations and limits in the current healthcare system regarding end-of-life care options. Understanding the climate in which family members must make decisions will facilitate supportive interventions to be implemented by healthcare professionals. Further empirical research is needed to explore family members' needs when the patient has been transferred and dies at home in mainland China. IMPLICATIONS FOR CLINICAL PRACTICE: Healthcare professionals need to understand the challenges family members face when deciding to transfer a relative home to die from an intensive care unit. For example time pressures can limit the choices of family members so that to provide them with timely, ongoing, realistic updates for a greater involvement of family members in generating end of life care plans could be beneficial.1.

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.

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. In view of this shortfall other routes to supply are needed with Hospice Care and Hospital Palliative care settings being a potential route. AIM: As Health Care Professionals (HCPs) are the gatekeepers to the option of ED being raised with patients and family members this presentation will share findings from a national survey carried out with HCPs across England between November/December 2020 seeking knowledge related to i) current practice across the ED pathway, 2) views of HCPs toward embedding ED in routine end of life care planning; and 3) what current informational, training, or support needs are reported by survey participants. FINDINGS: One hundred and fifty-six participants completed the online survey, representing an 8% response rate (of n=1894 approached). Responses to a 61-item questionnaire indicated that: the majority of respondents were aware of ED as an end-of-life option, however, despite the reported perception of most participants that discussing ED was not distressing to patients and family members the option of ED was only discussed IF the patient or family member first raised the topic. Currently most care settings do not actively encourage the option of ED being discussed with patients and/or their family members, nor is ED routinely discussed in multi-disciplinary meetings. Furthermore, when asked about training related to ED, 64% of participants (n = 99/154) said they had unmet training needs. CONCLUSION: Findings from this survey indicate a paradoxical stance toward ED among HCPs in hospice and palliative care settings; that is, substantial support for and positive attitudes toward inclusion of ED in end-of-life planning (including within their own practice), aligned with low levels of activity in offering the option. There is very little evidence of eye donation being embedded in part of 'routine' practice, and this may be linked to unmet training needs.

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.

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

Background: 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. Aim: Patients who die in hospice and palliative care settings could be potential donors; therefore the aim of this systematic scoping review was to identify the potential for eye donation and barriers toward it from these clinical contexts. Design: A scoping review following the Joanna Briggs scoping review methodology was applied to search the global literature. Results: 13 articles from the global literature were retrieved. Evidence indicate that 542 patients could potentially have donated their eyes. Key barriers to increasing eye donation include the reluctance of healthcare professionals to raise the option of eye donation and the evidenced lack of awareness of patients and family members about donation options and eligibility. This review also indicates a lack of clinical guidance drawn from high-quality evidence proposing interventions that could inform clinical practice and service development. Conclusion: The scoping review presented here provides an up-to-date view of the current potential for, perceptions toward, and practice underpinning offering the option of eye donation to dying patients and their family members in hospice and palliative care context.

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. The number of patients being transferred home to die was larger in China (74/184-96/159) than in the West (1-7). Clinical characteristics of patients transferred included: consciousness, with or without intubation and ventilation, and clinical stability. Reported key barriers to transfer included: Lack of evidence guiding transfer practice, the CCU environment and culture, Practical and logistical factors and Family members expectations and reactions. Key facilitators of transfer were reported as: Engagement with the multidisciplinary team and Personal patient and family wishes. CONCLUSIONS: Transferring patients home to die from critical care is a complex practice varying significantly across countries. Further research to address current knowledge gaps is important to inform policy and practice.

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. METHODS: Data was collected from eight paediatric cardiac intensive care nurses using semi-structured face to face or telephone interviews facilitated by a clinical vignette. Qualitative content analysis was undertaken adopting both inductive and deductive lenses. KEY FINDINGS: Three categories were deductively generated within which eleven inductively generated themes were situated. Barriers included: knowledge deficits of both process and resources; assumptions about parental views and reluctance to facilitate sensitive discussions, facilitators included positive attitudes toward donation aligned with a strong professional ethos and family-centred values. CONCLUSIONS: The paper identifies barriers to the donation after circulatory death process including nurses feeling unprepared for their role, anxiety over family approach and communication methods and support. Highlighted is the need for specific educational interventions, appropriate resources and development of paediatric focussed policy to guide practice. Facilitators to donation include timely, sensitive and appropriate family discussions, trusting nurse-family relationships and improved public awareness.

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. DESIGN: A retrospective qualitative study. SETTING: Multicentre study with participants recruited through two neonatal intensive care units (ICUs), two paediatric ICUs, a cardiac ICU and a children's hospice. PATIENTS: Bereaved parents, parents of a child with a long-term condition (LTC) and HCPs. INTERVENTIONS: None. MAIN OUTCOMES AND MEASURES: Parents' and HCPs' views and experiences of discussions about OTD. RESULTS: 24 parents of 20 children were interviewed: 21 bereaved parents and 3 parents of a child with a LTC. Seven parents were asked about donation (13 not asked), four agreed and two donated. 41 HCPs were interviewed. Themes: complexity of donation process, OTD as a coping strategy, the importance of asking, difficulty of raising the topic,\ and parents' assumptions about health of organs (when donation is not discussed). CONCLUSIONS: The findings add new knowledge about parents' assumptions about the value of their child's organs when discussions about OTD are not raised, and that HCPs do not routinely ask, are sometimes hesitant to ask in fear of damaging relationships, and the reality of the complexity of the donation process. Given the current levels of awareness around OTD, the topic should be raised.

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. Participant recruitment was via 10 National Health Service Trusts, representative of five regional organ donation services in the UK. Twelve families agreed to DBD, 18 agreed to DCD, 1 unknown. Participants' responses were contextualised using a temporal framework of 'The Past', which represented families' prior knowledge, experience, attitudes, beliefs, and intentions toward organ donation; 'The Present', which incorporated the moment in time when families experienced the potential for donation; and 'The Future', which corresponded to expectations and outcomes arising from the donation decision. RESULTS: Temporally interwoven experiences appeared to influence families' decisions to donate the organs of their deceased relative for transplantation. CONCLUSIONS: The influence of temporality on donation-decision making is worthy of consideration in the planning of future education, policy, practice, and research for improved rates of family consent to donation.

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. Inclusion/exclusion criteria were developed and applied to identify the number of patients who had potential to be transferred home to die and demographic and clinical data (eg, conscious state, respiratory and cardiac support therapies) collected. RESULTS: 7844 patients were admitted over a 12-month period. 422 (5.4%) patients died. Using the criteria developed 100 (23.7%) patients could have potentially been transferred home to die. Of these 41 (41%) patients were diagnosed with respiratory disease. 53 (53%) patients were conscious, 47 (47%) patients were self-ventilating breathing room air/oxygen via a mask. 20 (20%) patients were ventilated via an endotracheal tube. 76 (76%) patients were not requiring inotropes/vasopressors. Mean time between discussion about treatment withdrawal and time of death was 36.4 h (SD=46.48). No patients in this cohort were transferred home. CONCLUSIONS: A little over 20% of patients dying in critical care demonstrate potential to be transferred home to die. Staff should actively consider the practice of transferring home as an option for care at end of life for these patients.

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. Less is known about what bereaved family members actually observe at end of life and how this is interpreted. AIM: Secondary analysis study was conducted in order to explore the concept of vigilant attentiveness in family members of adult patients dying in intensive care. METHOD: Secondary analysis of eight interviews sorted from two primary data sets containing 19 interviews with 25 bereaved family members from two intensive care units in England was undertaken. Directed content analysis techniques were adopted. FINDINGS: Families are observant for physiological deterioration by watching for changes in cardiac monitors as well as paying attention to how their relative looks and sounds. Changes in treatment/interventions were also perceived to indicate deterioration. CONCLUSION: Families are vigilant and attentive to deterioration, implying that families are active participants in information gathering. By clarifying what families notice, or do not notice during the dying trajectory in ICU, health care professionals can tailor information, helping to prepare families for the death of their relative.

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. DESIGN: Consensus methodology. METHODS: At a one-day national event, stakeholders from cross-community and hospital settings engaged in group work wherein 'virtual clinical teams' mapped out, and agreed on, the processes involved in transferring critically ill patients home to die. Using two clinical cases and nominal group technique, factors were identified that promoted and inhibited transfer home and areas in need of development. Findings from the day informed development of a clinical guidance document. RESULTS: Eighty-five stakeholders attended the event from across England. The majority of stakeholders strongly agreed that transfer of critically ill patients home to die was a good idea in principle. Stakeholders identified 'access to care in the community' (n = 22, 31.4%) and 'unclear responsibility for care of patient' (n = 17, 24.3%) as the most important barriers. Consensus was reached on the processes and decision-making required for transfer home and was used to inform content of a clinical practice guidance document. This underwent further refinement following review by 14 clinicians. A final document in the form of a flow chart was developed. CONCLUSIONS: Transferring critically ill patients home to die is a complex, multifactorial process involving health care agencies across the primary and secondary care interface. The guidance developed from this consensus event will enable staff to actively consider the practice of transferring home to die in appropriate patients.

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. DESIGN: A national study developing a web-based survey, which was sent to the lead doctors and nurses in critical care units. SETTING/PARTICIPANTS: Lead doctors and senior nurses (756 individuals) working in 409 critical care units across the United Kingdom were invited to participate in the survey. RESULTS: In total, 180 (23.8%) completed surveys were received. A total of 65 (36.1%) respondents had been actively involved in transferring patients home to die and 28 (15.5%) had been involved in discussions that did not lead to transfer. Respondents were supportive of the idea of transfer home to die (88.8%). Patients identified by respondents as unsuitable for transfer included unstable patients (61.8%), intubated and ventilated patients (68.5%) and patients receiving inotropes (65.7%). There were statistically significant differences in views between those with and without experience and between doctors and nurses. Nurses and those with experience tended to have more positive views. CONCLUSION: While transferring patients home to die is supported in critical care, its frequency in practice remains low. Patient stability and level of intervention are important factors in decision-making in this area. Views held about this practice are influenced by previous experience and the professional role held.

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. DESIGN: Exploratory two-stage qualitative study SETTING/PARTICIPANTS: Six focus groups were held with doctors and nurses from four intensive care units across two large hospital sites in England, general practitioners and community nurses from one community service in the south of England and members of a Patient and Public Forum. A further 15 nurses and 6 consultants from critical care units across the United Kingdom participated in follow-on telephone interviews. FINDINGS: The practice of transferring critically ill patients home to die is a rare event in the United Kingdom, despite the positive view of health care professionals. Challenges to service provision include patient care needs, uncertain time to death and the view that transfer to community services is a complex, highly time-dependent undertaking. CONCLUSION: There are evidenced individual and policy drivers promoting high-quality care for all adults approaching the end of life encompassing preferred place of death. While there is evidence of this choice being honoured and delivered for some of the critical care population, it remains debatable whether this will become a conventional practice in end of life in this setting.

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. Practical strategies of relevance to the processes of participant recruitment, the interview encounter and follow-up care in the post-interview period are identified and discussed. Concerns about the possible impact of bereavement research are balanced with the views of family members who gave credence to the therapeutic and cathartic benefits of participating in sensitive, death-related research.

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. This is important in order to work towards solutions for issues that continue to pose problems for health care professionals. OBJECTIVES: To identify the challenges for health care professionals when moving from a recovery trajectory to an end of life trajectory in intensive care. DESIGN: Qualitative methods of enquiry. METHODS AND SETTING: Single semi-structured interviews with 13 medical staff and 13 nurses associated with 17 decedents who underwent treatment withdrawal in intensive care were carried out. Participants were drawn from two Intensive Care Units in a large university-affiliated hospital in England. FINDINGS: Patients who died in intensive care appeared to follow a three-stage end of life trajectory: admission with hope of recovery; transition from intervention to end of life care; a controlled death. The transition from intervention to end of life care was reported as being the most problematic and ambiguous stage in the end of life trajectory, with potential for conflict between medical teams, as well as between doctors and nurses. CONCLUSIONS: End of life care policy emphasises the importance of end of life care for all patients regardless of setting. These findings demonstrate that in intensive care, there is need to focus on transition from curative intervention to end of life care, rather than end of life care itself so that effective and timely decision making underpins the care of the 20% of intensive care patients who die in this setting each year.