Family bereavement: A case study of controlled organ donation after circulatory death.

Deceased organ donation represents a major source of organs for human transplantation practice. In the United Kingdom, as well as other parts of the world, donation after circulatory death accounts for a proportion of all deceased organ donors. Organ and tissue donation emotively takes place in the context of dying, death and bereavement, yet little is known about the family experience of donation after circulatory death. This paper presents a case study of the phenomenon of controlled donation after circulatory death in intensive care. We present a critical analysis of care processes through the lens of a British donor family who participated in a national study of organ and tissue donation. Anonymized family quotes are applied to illustrate specific case issues, and with reference to relevant national guidance and international research. The case portrayed intimate details of the moment in time when the family experienced the potential for controlled donation after circulatory death, factors that appeared to influence family consent and the perceived expectations and outcomes arising from the donation decision. Case analysis demonstrated local compliance with best practice guidance and compassionate end-of-life care while supporting organ retrieval. Caring for the grieving family of potential organ donors requires sensitivity and skill. Of importance is a sound professional knowledge and understanding of the clinical care pathway, together with effective teamwork, optimal communication, family and staff support. Further research is required to determine the impact of controlled donation after circulatory death on family grief and bereavement.

Radical actions to address UK organ shortage, enacting Iran's paid donation programme: A discussion paper.

Globally there is a shortage of organs available for transplant resulting in thousands of lives lost as a result. Recently in the United Kingdom 457 people died as a result of organ shortage in just 1 year. 1 NHS Blood and Transplant suggest national debates to test public attitudes to radical actions to increase organ donation should be considered in addressing organ shortage. The selling of organs for transplant in the United Kingdom is prohibited under the Human Tissue Act 2004. This discussion paper considers five ethical objections raised in the United Kingdom to paid donation and discusses how these objections are addressed within the only legal and regulated paid living unrelated renal donation programme in the world in Iran, where its kidney transplant list was eliminated within 2 years of its commencement. This article discusses whether paid living unrelated donation in Iran increases riskier donations and reduced altruistic donation as opponents of paid donation claim. The paper debates whether objections to paid donation based upon commodification arguments only oppose enabling financial ends, even if these ends enable beneficent acts. Discussions in relation to whether valid consent can be given by the donor will take place and will also debate the objection that donors will be coerced and exploited by a paid model. This article suggests that exploitation of the paid donor within the Iranian model exists within the legally permitted framework. However, paid living kidney donation should be discussed further and other models of paid donation considered in the United Kingdom as a radical means of increasing donation.

Screaming silences: lessons from the application of a new research framework.

BACKGROUND: The Silences Framework ( Serrant-Green 2011 ) originated from research exploring ethnicity, gender and sexual health decision-making, and provides a useful tool for researching underrepresented groups and topics. AIM: To present the lessons learned from the application of the Silences Framework in the context of a qualitative study exploring the experiences of people under the age of 60 recovering from a fragility hip fracture. DISCUSSION: The authors explore current conceptions of marginalisation in healthcare with reference to nursing research and provide practical tips for others interested in applying and further testing the framework. CONCLUSION: The framework is likely to be attractive to nurses as it is underpinned by core nursing values, such as advocacy-based action. It places participant and public voices at the centre of the research and resembles the familiar nursing process. The structure and flexibility it offers also makes it relevant for new and experienced researchers in a variety of contexts. IMPLICATIONS FOR PRACTICE: Critical analysis of the initial application of the Silences Framework in a different setting to the one in which it was developed indicates it offers a beneficial addition to the research toolkit. Its limited use to date means its relevance for nursing and potential for further development have not yet been fully established. It should be tested more widely and in other contexts.

Alcohol-related harm: developing a drug and alcohol liaison team.

The City of Wolverhampton has much higher rates of accident and emergency (emergency department) attendance and hospital admission for alcohol-related harm than in neighbouring health authorities and double the national death rate from alcohol-related liver disease. Recovery Near You, the local addiction service, in partnership with The Royal Wolverhampton NHS Trust, initiated a nurse-led drug and alcohol liaison team to address these health issues. This resulted in a tenfold increase in screening and engagement with patients in the acute hospital, the creation of guidelines, protocols and training available for staff in the Trust and an accessible service that has impacted positively on patient experience. This article describes the development of the team, outlining the challenges, successes and outcomes.

Silent slips, trips and broken hips in the under 60s: A review of the literature.

This critical review of the literature regarding the recovery experiences and healthcare needs of people under 60 following a fragility hip fracture seeks to identify the associated implications for nursing practice and inform care delivery. Forty papers were included following a structured database, citation and grey literature search and filtering of results in line with specified inclusion criteria. Hip fracture is a common, serious and complex injury and an important cause of morbidity, mortality and rising healthcare costs worldwide. This review indicates that although commonly associated with the elderly, incidence and impact in the under 60s has been under-explored. Current health policy, professional and social norms almost exclusively focus on the elderly, surgical interventions and short-term outcomes, rendering the under 60s an inadvertently marginalised, relatively 'silent' sub-set of the hip fracture population. Nurses must be aware, however, of the different recovery needs of this younger group. The limited evidence available indicates these include work related needs and long term physical and psychosocial limitations in this socially and economically active group. Priorities are identified for research to inform policy and practice. Meanwhile, nurses can address the needs of this group by listening to and involving them and their families as healthcare partners.

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.

Organ donation agency: A discourse analysis of correspondence between donor and organ recipient families.

Studies about the psychosocial issues concerning organ donation and transplantation tend to focus on the experiences of donor or recipient families. Little is known about the part played by correspondence exchanged between these two groups; in particular how they perceive the agency of organ donation. This is the first analysis to address the representation of the act of donation from the viewpoint of both donor and recipient families through interrogation of archived correspondence data, using linguistic techniques. The data was drawn from a collection of letters, from four USA organ procurement organisations, exchanged between donor and transplant recipient families. Donor families consistently linguistically ascribed agency and accountability for donation to the person who died, the donor. For the recipient families, on the other hand, the 'giver' was mainly implied, ambiguous or ascribed to the donor family.

Balancing hope and despair at the end of life: The contribution of organ and tissue donation.

PURPOSE: Concern for the grieving family can moderate the intentions of critical care staff to advocate deceased organ and tissue donation. Conversely, benevolent actions may provoke distress through missed opportunities to save or transform lives. This article provides insight into the perceived benefits of organ and tissue donation for grieving families who experienced end-of-life care in the intensive care unit. METHODS: Data were collected via semistructured, face-to-face or telephone interviews with 43 participants from 31 donor families. Audio recordings were transcribed verbatim and subjected to qualitative content analysis. RESULTS: The study findings affirmed the importance of person-centered end-of-life care. Donor families shared examples of good-quality care and communication that contained the hallmarks of compassion, respect, dignity, and choice. We uncovered a trajectory of hope and despair in which the option of organ and tissue donation appeared to give meaning to the life and death of the deceased person and was comforting to some families in their bereavement. CONCLUSIONS: Our study findings underlined the significance of donation decision making for grieving families. Organ and tissue donation has the potential to balance hope and despair at the end of life when the wishes of the dying, deceased, and bereaved are fulfilled.

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.

Factors influencing bereaved families' decisions about organ donation: an integrative literature review.

This article reports on the process and outcomes of a systematic integrative literature review, designed to enhance understanding of the factors influencing bereaved families' decisions to agree or decline the donation of their deceased relative's organs for transplantation. Research originating from eight Western countries (N = 20 studies) provided an international perspective to the review. Thematic analysis and synthesis of textual data culminated in the development of three global themes (past, present, and future) that captured the temporal dimensions of family decision making. The review findings provide valuable insight into ways of increasing the rate of consent to organ donation through the development family-centered care interventions that reflect the needs of the bereaved. Further research to explore the pathway of donation after circulatory death and the experiences of bereaved families who decline organ donation is essential to providing a more complete understanding of the factors affecting donation decisions.

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.

Decision-making processes used by nurses during intravenous drug preparation and administration.

AIM: The aim of this study was to explore the decision-making processes that nurses use during intravenous drug administration and how this influences risk taking and errors. BACKGROUND: Intravenous drug errors have been estimated to be a third of all drug errors. Previous drug error research has focused on observation of nurses and errors they make but has not attempted to understand the decision-making processes used during the preparation and administration of intravenous drugs. METHOD: A three-phased ethnographic study was carried out in a specialist cancer hospital in 2007 using focus groups, observation and interviews. This article is concerned with the observation and interview phase. Observation took place on two wards, each over a week. Twenty nurses were observed preparing and administering intravenous drugs; then interviewed about their procedure. Data analysis was carried out using a five stage approach. FINDINGS: Major themes identified include: interruptions; identification and knowing the patient; routinized behaviour, prevention of errors. These represent the findings of the observation and interviews with the nurses. One key finding was the lack of checking of patient identity prior to IV drug administration, which appeared to be based on nurses feeling they knew the patient well enough, although this was in contrast to how they checked even familiar drugs. This article will focus on identification and knowing the patient. CONCLUSION: Implications for practice included: exploring new and effective methods of education based on behavioural theories; involving staff in updating policies and procedures; formal assessment of staff during intravenous preparation and administration.

What does a diagnosis of brain death mean to family members approached about organ donation? A review of the literature.

BACKGROUND: What a diagnosis of brain stem death (the term used in the United Kingdom) or brain death (the term used in the United States) means to the family members of potential organ donors is an important issue to explore as biomedicine moves to expand the range of end-of-life technologies that, potentially, blur the demarcation between life and death. OBJECTIVE: To provide some insights into how a diagnosis of brain stem death or brain death may be perceived by family members approached about organ donation. METHODS: A review of the literature regarding organ donation was carried out. RESULTS: Although most publications do not focus specifically on the concept of brain death, those that do so made a valuable contribution, offering potential theoretical frameworks to aid our understanding of what the diagnosis of death by brain-based criteria means to family members of potential organ donors. The diagnosis of brain death is intricately linked to the issue of organ donation and may influence family members' decision making. Also, the perception that death has occurred differs from one person to another. CONCLUSIONS: A sustained increase in the number of organs available for transplantation may never be achieved until the concepts of brain death, brain stem death, and now non-heart-beating death (1) are debated more widely within society; (2) a greater degree of consensus is reached within health care; and (3) bereaved family members approached to donate the organs of their deceased relative have a better understanding of what these diagnoses mean.

Conflict rationalisation: how family members cope with a diagnosis of brain stem death.

Brain death, whether it be brain stem death in the UK, or whole-brain death in the USA, is a prerequisite for heart-beating organ donation. Understanding how brain death is perceived by family members approached about organ donation, its significance to them, and if it is accepted by them, are, therefore, important issues to explore as biomedicine expands the range of end of life technologies that blur the demarcation between life and death. To explore the concept of brain stem death and its meaning to family members the following research questions were posed: (i) what does the diagnosis of death based on brain stem testing mean to bereaved family members who have been approached and asked to consider a donation from a deceased relative, and (ii) how do family members understand the concept of brain stem death? To address these research questions, a secondary analysis of 28 interviews sorted from two primary datasets was carried out. The primary datasets contained longitudinal and cross-sectional interviews carried out in the UK with family members who had been approached about organ donation and agreed to donate their relatives' organs. Data analysis was guided by constructionist grounded theory method and resulted in the theory of Paradoxical Death. In this process, family members and health professionals engage in a series of practical and psychological activities aimed at rationalising real or potential emotional and cognitive conflict resulting from a brain-based diagnosis of death, whilst faced with the physical image of a functioning body. Rationalising emotional and cognitive conflict is how family members and health professionals appeared to process this paradoxical death, a death that is contrary to conventional opinion.

The UK postmortem organ retention crisis: a qualitative study of its impact on parents.

OBJECTIVE: To explore the impact of postmortem organ retention on parents who made enquiries about their babies and children when the retention of hearts and other organs removed at postmortem and stored without explicit knowledge or consent of the next-of-kin came to public attention in the UK during 1999-2004. DESIGN: Qualitative study conducted 2003-2004. Data were collected via semi-structured, qualitative interviews and focus groups. PARTICIPANTS: 39 parents who had been affected by organ retention. SETTING: Participants were recruited via three parental peer support groups and two NHS Hospital Trusts. RESULTS: Transcripts of the interviews and focus groups were analysed using a thematic approach that sought patterns within the data and highlighted important similarities and differences between participants' accounts. Participants reported the distressing impact organ retention had on their lives; their need for information about the retention of their babies' or children's organs; and the difficulties in their decision making about disposal of retained body parts and tissue blocks and slides. Analysis indicated that organ retention had evoked unresolved bereavement issues and a renewal of grief as well as an opportunity for some parents to resolve ongoing bereavement concerns. CONCLUSIONS: Parents in this study wanted NHS teams to appreciate the difficulties organ retention had caused them, deal with their enquiries proactively with openness and honesty, and facilitate an environment where they felt supported and could gain the answers to their questions and concerns that were provoked by postmortem organ retention. Such issues may also have implications for the care of other parents and relatives of deceased children.

Why relatives do not donate organs for transplants: 'sacrifice' or 'gift of life'?

AIM: This paper is a report of a study to explore the reasons family members declined organ donation from a deceased relative. BACKGROUND: In the United Kingdom family members' consent is usually sought before organ donation from their deceased relative can proceed. Knowledge of the concerns that may influence families' decision-making could be helpful to nurses supporting bereaved family members. METHOD: A convenience sample of 26 family members, who declined donation of their deceased relatives' (n = 23) organs, were recruited via three media campaigns in large conurbations and from four intensive care units in the United Kingdom. Data were collected in 2005 using interviews. FINDINGS: Donation decisions depended on a number of converging factors in a particular situation and not necessarily on the views of relatives about donation, or the reported wishes of the deceased in life, except if the person had stated that they did not wish to be an organ donor. Therefore, reported pro-donation views held by the family, or the deceased in life, did not guarantee donation. Protecting the dead body, which related to keeping the body whole and intact was the most frequently-recurring theme, being reported in 15 interviews. CONCLUSION: Families' wishes to protect the dead body may stimulate tension between the notions of 'gift of life' as supported by transplant policy and 'sacrifice' of the body, which must be made if organ donation is to proceed. This could account for the decision of participants to decline donation even if their deceased relative previously held positive views about organ donation.

Palliative care and end of life issues in UK pre-registration, undergraduate nursing programmes.

Palliative and end of life care topics have traditionally not been in nursing school curricula. Only in recent years have these been included. The aim of this research was to determine the current status of such an emphasis in programmes in the United Kingdom (UK). A mailed survey in 2006 to the 66 undergraduate (pre-registration) nursing programmes in the UK (return rate of 79%) determined that palliative and end of life care play a significant role in these programmes. Forty-five teaching hours on average were devoted to these topics. All of the schools have some provision on palliative and end of life care, and over 95% of students participated in these courses. A nurse was usually the primary instructor, although non-nurses were sometimes used. Attitudes toward dying and death and communicating with terminally-ill patients and family members were emphasised. By highlighting dying and death in the curricula, nursing schools appeared to be giving nursing students an opportunity to face the issue of death, thus helping them to be better prepared to help their patients and their families to do so.

Information sharing: its impact on donor and nondonor families' experiences in the hospital.

OBJECTIVE: To illustrate the methods used to convey complicated information regarding the critical injury, and death diagnosed by means of brainstem testing, to the next of kin of potential organ donors. DESIGN: 3-year, prospective, longitudinal study. PARTICIPANTS AND SETTING: Forty-three family members who chose to donate their deceased relatives' organs were recruited via 4 transplant coordinating centers, and 3 family members who chose not to donate were recruited via 1 intensive care unit. METHOD: Face-to-face qualitative interviews were carried out with 46 family members of 43 individuals who died between June and December 2000. Family members who agreed to donation were interviewed during and after their next of kin's admission to hospital and 3 to 5 months, 13 to 15 months, and 18 to 26 months after bereavement. Three participants who chose not to donate were interviewed on 1 occasion only. Interviews were audio-recorded, and the transcribed reports were analyzed using a comparative, thematic approach focusing on the detection of similarities and differences between cases. RESULTS: Participants who were offered verbal information supported by complementary methods of communication had (1) a greater understanding of the critical injury sustained by their next of kin, and (2) fewer questions over time regarding brainstem testing. CONCLUSION: Better methods of communicating complicated information are needed, as the sheer load of information shared makes demands of next of kin at a time when they are cognitively and emotionally poorly equipped to respond.

'Living choice': the commitment to tissue donation in palliative care.

Professionals working in palliative care pride themselves on respecting patients' views and wishes. Palliative care patients are often aware that they are going to die and so the issue of what is going to happen to them after death becomes more relevant. That they should be involved in decisions about tissue donation seems obvious, yet many palliative care units do not routinely discuss donation with patients and their families. A grounded theory approach was used to develop an explanation of the low commitment to tissue donation by palliative care units. Six registered nurses and two doctors from each of two separate palliative care units participated in semi-structured, audiotaped interviews. Several themes emerged from the interviews to form a theory of why there is a low commitment to tissue donation in palliative care units. We have called the theory 'living choice'. The dominant theme of category was 'patient choice' and this pervaded and influenced 'professional role', 'donation process', 'concerns' and 'knowledge'. All these categories were contained and continuously interacted in the palliative care environment.