Families Of Potential Organ Donors Research Articles

The bereavement experiences of families of potential organ donors: a qualitative longitudinal case study illuminating opportunities for family care

ABSTRACT Objectives To illuminate opportunities for care in the context of deceased organ donation by exploring pre-existing family and healthcare professional characteristics, in-hospital experiences, and ongoing adjustment through the lenses of grief theory, systems theory, meaning-making, narrative, and organ donation literature. Method Qualitative longitudinal case studies explored individual and family change in five Australian families who had consented to Donation after Circulatory Determination of Death at a single centre. Participants attended semi-structured interviews at four, eight, and twelve months after the death. Findings Family values, pre-existing relationships, and in-hospital experiences influenced first responses to their changed lives, understanding of the patient’s death, and ongoing family adjustment. Novel behaviour that was conguent with family values was required at the hospital, especially if the patient had previously played a key role in family decision-making. This behaviour and emerging interactional patterns were drawn into family life over the first year of their bereavement. Recommendations Training that includes lenses introduced in this study will enable healthcare professionals to confidently respond to individual and family psychosocial needs. Conclusion The lenses of grief theory and systems thinking highlight opportunities for care tailored to the unique in-hospital context and needs that emerge in the months that follow.

Ambiguous loss in organ donor families: A constructivist grounded theory.

Explore families' experiences when being approached for organ donation authorisation after brainstem death. The complexities of potential organ donor families' experiences include challenges related to emotional distress, coping with the loss and the organ donation decision-making process, and support needed. A lack of conceptual clarity was found concerning families' experiences when being approached for organ donation authorisation, which guided the study. Constructivist grounded theory. Seventy-one participants, including healthcare professionals and families, were recruited from two large hospitals in Chile between 2017 and 2019. Field notes, documents (n=80), interviews (n=27) and focus groups (n=14) were collected and analysed following Charmaz's constructivist grounded theory principles and practices until theoretical saturation was reached. The study is reported using the COREQ checklist. A third type of ambiguous loss of bereaved families' experience was developed as a fourfold process: (1) impending loss, (2) confirming loss, (3) ambiguous loss and organ donation decision-making and (4) organ donation as a third type of ambiguous loss. This grounded theory expands the concepts of ambiguous loss by Boss, dying by Glaser and Strauss and grief by Brinkmann, enabling explanation of families' experiences. Families of potential organ donors develop a highly complex grieving process, which may play a significant role in the organ donation decision-making process. Ambiguity is embedded in how donor families reframe the existence of the donor through the act of giving life. The findings shed light on families' experiences on the organ donation process after brainstem death. The study can be used in nursing practice, education and to inform policy nationally and globally, mainly due to the current focus on quantitative measures and legislative changes fostering individual decision-making. Families contributed through their first-hand experiences of the organ donation process.

What's in this Special Issue

What's in this Special Issue

Deemed consent to organ donation: what critical care nurses need to know.

British Journal of NursingVol. 29, No. 15 NHS Blood and TransplantDeemed consent to organ donation: what critical care nurses need to knowPhil Walton, Cathy Miller, Steven Maycock, Kristian NicolPhil WaltonLegislation Project Lead—Organ Donation & Nursing, NHS Blood and TransplantSearch for more papers by this author, Cathy MillerLegislation Project Lead—Education and Governance, NHS Blood and TransplantSearch for more papers by this author, Steven MaycockCharge Nurse, Intensive Therapy Unit/High Dependency Unit, Withybush General Hospital, HaverfordwestSearch for more papers by this author, Kristian NicolPractice Development Charge Nurse, Intensive Care, Kettering General Hospital NHS Foundation TrustSearch for more papers by this authorPhil Walton; Cathy Miller; Steven Maycock; Kristian NicolPublished Online:13 Aug 2020https://doi.org/10.12968/bjon.2020.29.15.910AboutSectionsView articleView Full TextPDF/EPUB ToolsAdd to favoritesDownload CitationsTrack CitationsPermissions ShareShare onFacebookTwitterLinked InEmail View article References Department of Health and Social Care. Consultation outcome. Organs and tissues to be excluded from the opt-out organ donation system: government response. 2020. https://tinyurl.com/y5szt79g (accessed 5 August 2020) Google ScholarHulme W, Allen J, Manara AR, Murphy PG, Gardiner G, Poppitt E. Factors influencing the family consent rate for organ donation in the UK. Anaesthesia. 2016;71(9):1053-1063. https://doi.org/10.1111/anae.13535 Crossref, Medline, Google ScholarHuman Tissue Authority. Codes of practice and standards. 2020. https://tinyurl.com/yx8zngc3 (accessed 3 August 2020 Google ScholarNational Institute for Health and Clinical Excellence. Organ donation for transplantation: improving donor identification and consent rates for deceased organ donation. Clinical guideline CG135. 2016. https://www.nice.org.uk/guidance/cg135 (accessed 3 August 2020) Google ScholarNHS Blood and Transplant. Timely Identification and Referral of potential organ donors. 2014. https://tinyurl.com/yxa54cvzf (accessed 3 August 2020) Google ScholarNHS Blood and Transplant. Approaching the families of potential organ donors. 2015. https://tinyurl.com/y4cgeoqg (accessed 3 August 2020) Google ScholarNHS Blood and Transplant. Organ donation and transplantation activity report 2018/19. 2019. https://tinyurl.com/vazfuw6 (accessed 3 August 2020) Google ScholarNoyes J, Morgan K, Walton P, Roberts A, Mclaughlin L, Stephens M. Family attitudes, actions, decisions and experiences following implementation of deemed consent and the Human Transplantation (Wales) Act 2013: mixed-method study protocol. BMJ Open. 2017;7:e017287. https://doi.org/10.1136/bmjopen-2017-017287 Crossref, Medline, Google ScholarNoyes J, McLaughlin L, Morgan K et al.. Short-term impact of introducing a soft opt-out organ donation system in Wales: before and after study. BMJ Open. BMJ Open. 2019;9:e025159. https://doi.org/10.1136/bmjopen-2018-025159 Medline, Google Scholar FiguresReferencesRelatedDetailsCited byEmbedding changes in legislation for organ and tissue donation across England and JerseyCathy Miller, Louise Hubner, Sonya Paterson, Bobbee Cotter, Phil Walton, Helen Bentley, Claire Roberts18 March 2021 | British Journal of Nursing, Vol. 30, No. 5 13 August 2020Volume 29Issue 15ISSN (print): 0966-0461ISSN (online): 2052-2819 Metrics History Published online 13 August 2020 Published in print 13 August 2020 Information© MA healthcare LimitedPDF download

The development of a narrative describing the bereavement of families of potential organ donors: A systematic review.

Families of potential post-mortem organ donors face various challenges in the unfamiliar hospital context and after returning home. This review of sources published between 1968 and 2017 seeks to understand their journey as a bereavement experience with a number of unique features. Grief theory was used to identify ways that staff can assist family members to tolerate ambiguities and vulnerabilities while contributing to an environment characterised by compassion and social inclusion. Staff can guide families and create opportunities for meaningful participation, building resilience and developing bereavement-related skills that could assist them in the months that follow.

In-hospital experiences of families of potential organ donors: A systematic review and qualitative synthesis.

Information and compassion assist families of potential organ donors to make informed decisions. However, psychological implications of the in-hospital process are not well described with past research focusing on decision-making. To enhance understanding and improve service delivery, a systematic review was conducted. Inductive analysis and synthesis utilised Grounded Theory Methodology within a systems theory framework and contributed to a model proposing that family and staff form a System of Systems with shared responsibility for process outcomes. This model can guide evaluation and improvement of care and will be tested by means of a longitudinal study of family experiences.

Randomised, Double Blind, Controlled Trial of the Provision of Information about the Benefits of Organ Donation during a Family Donation Conversation

IntroductionIt is unclear how much information should be provided to families of potential organ donors about the benefits of organ donation. Whilst this information is material to the donation decision, it may also be perceived as coercive.MethodsRandomised, double blind, controlled trial in which community members watched one of two videos of a simulated organ donation conversation that differed only in the amount of information provided about the benefits of donation. Participants then completed a questionnaire about the adequacy of the information provided and the degree to which they felt the doctor was trying to convince the family member to say yes to donation.ResultsThere was a wide variability in what participants considered was the “right” amount of information about organ donation. Those who watched the conversation that included information about the benefits of donation were more likely to feel that the information provided to the family was sufficient. They were more likely to report that the doctor was trying to convince the family member to say yes to donation, yet were no more likely to feel uncomfortable or to feel that the doctor was uncaring or cared more about transplant recipients than he did for the patient and their family.ConclusionsThis study suggests that community members are comfortable with health care staff providing information to family members that may be influential in supporting them to give consent for donation.

Organ donation, ethnicity and the negotiation of death: ethnographic insights from the UK

The introduction of end-of-life care criteria in the UK aims at standardising the processes of care at the end of life, including how medical decisions on death are communicated to the families of dying and (brain) dead patients. In the setting of the intensive care unit, these activities are routinely complicated by the imperative to secure donor organs for transplantation: where recent changes to donation services have seen the accommodation of organ donation procedures into end-of-life care routines. This has ramifications for understanding how medical decisions around death and dying are brokered with the families of potential organ donors. Drawing on an ethnographic study in England, this paper will document how communications around death get turned into a particular matter of concern for the practice of requesting organ donation from minority ethnic families. It shows how attempts to resolve differences of opinion between health professionals and families about a diagnosis of brain stem death or dying are mediated by sets of brokering practices: specifically, those termed technological, authoritative and religious brokering. These practices, we argue, not only facilitate a family’s acceptance of their relative’s death, but also serve to make possible a decision on organ donation.

Survey on knowledge, attitude and practice towards potential organ donors′ coordinating donation in clinical nurses

Objective To understand the knowledge, attitudes and practice (KAP) of nurses in relation to potential organ donors′ coordinating donation, in order to provide references for the establishment of the human organ donation coordination mode in clinical nurses. Methods The investigation was carried out among 375 nurses in one public hospital in June 2013. 353 questionnaires were returned, with a response rate of 94.1%. Results A total of 66.3% nurses thought that the main potential organ donors were derived from the sudden unexpected death of the crowds. The top three departments of the potential organ donors were intensive care unit, the emergency room and neurosurgery department. Only 20.4% nurses discerned the indications of the potential organ donor, 65.7% nurses thought the popularization of knowledge was the biggest advantage in public hospital in terms of organ donation, 68.8% nurses were not willing to prompt donations intention initiatively to the families of potential organ donors, Only 44.8% nurses were willing to be a part-time organ donation coordinators. Conclusions The KAP is not optimistic among nurses. This survey demonstrates a need for more continuing education and training, especially on how to identify potential organ donors. The organ donation coordinators′ team should be built. Key words: Nurses; Organ donation; Knowledge; Attitude; Practice

Causes of Organ Donation Refusal in Southern Iran

Background Family refusal is an important factor that limits the number of organ donations. Some studies from different centers have reported various reasons for family decisions of organ donation refusal. This study evaluated the reasons for organ donation refusal by family members covered in our organ procurement organization. Methods This cross-sectional study was performed among families of potential organ donors who satisfied brain death criteria as identified between March 2009 and March 2010. Results Among 125 potential donors 73 (58.4%) families refused donation. Their main reasons were as follows: lack of acceptance of brain death n = 26 (35.6%), belief in miracle and patient recovery ( n = 22; 30.1), fear of gossip regarding sale rather than autonomous organ donation ( n = 11; 15.1%), and fear about deformation of the donor's body ( n = 9; 12.3%). Conclusion Family members play an important role in the final decision for organ donation. The general public should be encouraged to register their donation preferences in the case of brain death.

Causes of Family Refusal for Organ Donation

Introduction Family refusal represents a barrier for organ donation together with other cultural and religious factors possible ignorance and clinical obstacles. Methods We performed this retrospective study by phone employing our organ procurement unit database, using a list of families of potential organ donors who had refused organ donation. Results In 2009, 146 potential organ donor families refused donation. We contacted 81 families. The main reason expressed by there families to justify the refusal to donate the deceased's organs was denial and rejection of brain-death criteria (44.4%). Other causes were believing in a miracle (13.6%); fear about organ trade and unknown organ destination (9.9%); religious beliefs (8.6%); insecutrity about the brain-death diagnosis (6.2%); unstable family mood (6.2%); unknown donor wishes about donation (4.9%); belief in body integrity after death (3.7%); and fear of objection by other family members (2.5%). Conclusion Our findings showed several reasons for family refusal for organ donation; among the main cause is poor acceptance of brain death. It seems that increasing the knowledge of people about brain death and organizing strategies to confirm brain death for families are necessary to meet the organ shortage.

End-of-Life Decision Making, Organ Donation, and Critical Care Nurses

End-of-Life Decision Making, Organ Donation, and Critical Care Nurses

Organ donation and family decision-making within the Spanish donation system

This study analyses the variables associated with the decisions made by families of potential organ donors to give or deny consent for the extraction of organs. Different indicators were recorded in 68 cases of family interview for petition of consent carried out in 13 Spanish hospitals. Those variables showing the strongest relation with family decision (donation/refusal of consent) are knowledge shown by the family about the deceased's wishes with regard to donation ( p<0.001), family relationship climate ( p<0.01), expression of family's satisfaction level with medical attention received ( p<0.01) and number of relatives present at the consent request interview ( p<0.01). Logistic regression on family decision with considered variables correctly predicted relatives’ final choice in 98.4% of cases. In turn, multivariate exploratory analysis highlights a potential association between the expression of the deceased's wishes and several concurrent variables in the process (satisfaction with personal treatment and medical attention received, emotional reactions in the interviews of notification of death and consent request). It also shows that patterns of reaction and family participation in this process may vary according to the sex of the deceased relative. Results suggest that both educational efforts devoted to promoting a positive attitude toward donation in the general population and the training of health professionals involved in the generation of organs may be key factors in reducing organ shortage.

Current considerations in the issue of brain death.

Brain death is an anatomically and physiologically complex process. The societal and psychological implications of brain death and organ donation are equally complex, and they have profound ramifications. Because the vast majority of organ donors die as a consequence of catastrophic intracranial processes, neurosurgeons are in a unique position to positively influence the supply of transplantable organs. Enhanced knowledge of the physiology of evolving brain death will improve the care of potential organ donors and increase the probability of successful transplantation. Likewise, better information about patient and family directives, beliefs, grieving, concurrent exposure to other health care workers, and experiences in the hospital environment will assist the neurosurgeon in providing the family with the opportunity for donation. Neurosurgeons can also play a leading role in the multidisciplinary approach required to support the families of potential organ donors during the transition from neurointerventional therapy to somatic support. New federal regulations on organ donation and a review of the literature about the "art of asking" are presented.

Organ donation: the family's right to make an informed choice.

The need for organ transplants has increased 200% over the past decade, while the number of organ donors has remained relatively constant. The family's refusal to consent to organ donation has been cited as one of the key factors in the shortage of organs. Lack of understanding about brain death and organ donation have been identified as reasons for refusal to consent. Families of potential organ donors are receiving inadequate information to make informed choices about organ donation, and their emotional needs are not consistently met. Neuroscience nurses can improve consent rates for organ donation by effectively addressing the needs of the potential donor family and offering them the option to donate their loved one's organs.

Thirty Hours from Referral to Cross-Clamp: A Case Study in Organ Procurement

Families of potential organ donors might have requests that prolong the donation process. Organ procurement organizations therefore should be sensitive to these issues, or risk losing potential donors. This study focused on a case that in duration surpassed 30 hours from initial referral to cross-clamp in the operating room. This article examines the legal, family, and management issues involved in such a case.

Life or death. The issue of payment in cadaveric organ donation

IN 1989, 1878 people died while awaiting organ transplantation. Public awareness programs, professional education, and legislation have not increased organ donation; the motive for consent in organ donation remains altruism. I shall argue that because of an ever larger number of patients listed as candidates for lifesaving organs, the policy of a death benefit payment to motivate families of potential organ donors should be studied. A death benefit of $1000 paid through organ procurement organizations would not necessarily be coercive. Laws now prohibiting organ brokerage and assuring fair organ allocation would continue unchanged. A death benefit payment may most favorably affect the socially disenfranchised through increased organ transplantation in minority populations. Because so many salvageable lives are now lost, only because organs cannot be obtained, pilot programs to determine the impact of death benefit payment to the enabling (consenting) next-of-kin should be initiated. If organ recovery increases sufficiently, a nationwide

The organization of organ procurement.

The American organ procurement system has improved and matured in the last five years. At the same time, the basic challenges facing it have remained substantially the same because the moral and legal framework of the system has not changed. Success at organ procurement continues to depend on the voluntary cooperation of medical professionals and the families of potential organ donors. The generosity of the American public is so great that the primary challenge facing organ procurement agencies is obtaining cooperation from hospitals and medical professionals. This calls for a "marketing" orientation aimed at those hospitals and professionals who are most likely to treat potential donors. The last five years have seen a more general acceptance of this appreciation of the central task of organ procurement. As a result, the overall effectiveness of the system has improved, as measured by the number of organs procured on a per capita basis and by the number of multiorgan donors obtained. Much of this improvement can be attributed to the diffusion of organizational techniques and approaches, and this diffusion has been encouraged by the involvement of national organizations and public bodies in the organ procurement community. The system remains uneven in its effectiveness and further improvement is possible. It is also possible that the next general round of improvement will result from the application of businesslike information management and marketing techniques.