INTRODUCTION: In Canada, deceased organ donation provides over 80% of transplanted organs. At the time of death, families, friends or others assume responsibility as substitute decision-makers (SDMs) to consent to organ donation. Despite their central role in this process, little is known about what barriers, enablers and beliefs influence decision-making among SDMs. This study aims to explore the experiences and perspectives of SDMs involved in making decisions around the withdrawal of life-sustaining therapies, end-of-life care and deceased organ donation.
METHODS AND ANALYSIS: SDMs of 60 patients admitted to intensive care units will be enrolled for this study. Ten hospitals across five provinces in Canada in a prospective multicentre qualitative cohort study. We will conduct semistructured telephone interviews in English or French with SDMs between 6 and 8 weeks after the patient's death. Our sampling frame will stratify SDMs into three groups: SDMs who were not approached for organ donation; SDMs who were approached and consented to donate and SDMs who were approached but did not consent to donate. We will use two complementary theoretical frameworks-the Common-Sense Self-Regulation Model and the Theoretical Domains Framework- to inform our interview guide. Interview data will be analysed using deductive directed content analysis and inductive thematic analysis.
ETHICS AND DISSEMINATION: This study has been approved by the Centre Hospitalier de l'Université de Montréal Research Ethics Board. The findings from this study will help identify key factors affecting substitute decision-making in deceased organ donation, reasons for non-consent and barriers to achieve congruency between SDM and patient wishes. Ultimately, these data will contribute to the development and evaluation of tools and training for healthcare providers to support SDMs in making decisions about organ donation.
Critics of organ donation after circulatory death (DCD) argue that, even if donors are past the point of autoresuscitation, they have not satisfied the "irreversibility" requirement in the circulatory and respiratory criteria for determining death, since their circulation and respiration could be artificially restored. Thus, removing their vital organs violates the "dead-donor" rule. I defend DCD donation against this criticism. I argue that practical medical-ethical considerations, including respect for do-not-resuscitate orders, support interpreting "irreversibility" to mean permanent cessation of circulation and respiration. Assuming a consciousness-related formulation of human death, I then argue that the loss of circulation and respiration is significant, because it leads to the permanent loss of consciousness and thus to the death of the human person. The DNR request by an organ donor should thus be interpreted to mean "do not restore to consciousness." Finally, I respond to an objection that if "irreversibility" has a medical-ethical meaning, it would entail the absurd possibility that one of two individuals in the same physical state could be alive and the other dead-an implication that some think is inconsistent with understanding death as an objective biological state of the organism. I argue that advances in medical technology have created phenomena that challenge the assumption that human death can be understood in strictly biological terms. I argue that ethical and ontological considerations about our nature bear on the definition and determination of death and thus on the permissibility of DCD.
Despite the popularity, success, and growth of programs of organ donation after the circulatory determination of death (DCDD), a long-standing controversy persists over whether the organ donor is truly dead at the moment physicians declare death, usually following five minutes of circulatory and respiratory arrest. Advocates of the prevailing death determination standard claim that the donor is dead when declared because of permanent cessation of respiration and circulation. Critics of this standard argue that while the cessation of respiration and circulation may be permanent, it may not be irreversible at the moment death is declared because, if cardiopulmonary resuscitation were performed, it might succeed. And because irreversibility of cessation of respiration and circulation is required by both the statute and the biological concept of death, the donor must be alive. Who is correct?
Making two related distinctions clarifies the cause of the disagreement over whether the DCDD donor is dead and points to a possible resolution. First, in a determination of death, there is an important distinction between the permanent and the irreversible cessation of circulation and respiration—two associated phenomena that are often confounded. Second, there is an important distinction between the medical practice standard for death determination, in which physicians certify the permanent cessation of vital functions as sufficient for death declaration, and the underlying biological concept of death that requires the irreversible cessation of vital functions because death, by definition, is an irreversible event.
Ce numéro comprend les articles suivants : brain death at fifty: exploring consensus, controversy, and contexts ; would a reasonable person now accept the 1968 Harvard brain death report? A short history of brain death ; a path not taken: beecher, brain death, and the aims of medicine ; Beecher dépassé: fifty years of determining death, legally ; a conceptual justification for brain death ; brain death: a conclusion in search of a justification ; conceptual issues in DCDD donor death determination ; DCDD ddonors are not dead ; uncontrolled DCD: when should we stop trying to save the patient and focus on saving the organs? ; a defense of the dead donor rule ; the dead donor rule as policy indoctrination ; the public's right to accurate and transparent information about brain death and organ transplantation ; brain death and the law: hard cases and legal challenges ; rethinking brain death as a legal fiction: is the terminology the problem? ; respecting choice in definitions of death ; imposing death: religious witness on brain death ; death: an evolving, normative concept ; lessons from the case of Jahi McMath ; the case of Jahi McMath: a neurologist's view ; revisiting death: implicit bias and the case of Jahi MMath.
According to international scientific medical consensus, death is a biological, unidirectional, ontological state of an organism, the event that separates the process of dying from the process of disintegration. Death is not merely a social contrivance or a normative concept; it is a scientific reality. Using this paradigm, the international consensus is that, regardless of context, death is operationally defined as “the permanent loss of the capacity for consciousness and all brainstem function. This may result from permanent cessation of circulation or catastrophic brain injury. In the context of death determination, ‘permanent’ refers to loss of function that cannot resume spontaneously and will not be restored through intervention.” The word “permanent” replaces “irreversible” (used in the United States’ 1980 Uniform Declaration of Death Act) in this new definition, arguably invented to allow donation after circulatory determination of death (DCDD) while still complying with the dead donor rule. I will show that this invention fails, for at least four reasons.
The organ transplantation enterprise is morally flawed. "Brain-dead" donors are the primary source of solid vital organs, and the transplantation enterprise emphasizes that such donors are dead before organs are removed-or in other words that the dead donor rule is followed. However, individuals meeting standard diagnostic criteria for brain death-unresponsiveness, brainstem areflexia, and apnea-are still living, from a physiological perspective. Therefore, removing vital organs from a heart-beating, mechanically ventilated donor is lethal. But neither donors nor surrogates nor the public in general are typically informed of this obviously relevant information. Therefore, donors or surrogates do not provide valid consent for a lethal medical procedure. This is a serious moral failing on the part of the transplant community. To address this concern, I advocate for accurate and fully transparent communication of information to the public to allow for an informed civic dialogue about the ethics and legality of lethal organ procurement. Furthermore, I advocate that systems be put in place by the transplant community to allow for valid consent for lethal organ procurement.
Uncontrolled donation after circulatory death, which occurs when an individual has experienced unexpected cardiac arrest, usually not in a hospital, generates both excitement and concern. On the one hand, uDCD programs have the capacity to significantly increase organ donation rates, with good transplant outcomes-mainly for kidneys, but also for livers and lungs. On the other hand, uDCD raises a number of ethical challenges. In this essay, we focus on an issue that is central to all uDCD protocols: When should we cease resuscitation and shift to organ preservation? Do current uDCD protocols prematurely consider as potential donors patients who could still have some chances of meaningful survival? Can the best interest of patients be fostered once they are considered and treated as potential donors?
Since the 1960s, organ procurement policies have relied on the boundary of death-advertised as though it were a factual, value-free, and unobjectionable event-to foster organ donation while minimizing controversy. Death determination, however, involves both discoveries of facts and events and decisions about their meaning (whether the facts and events are relevant to establish a vital status), the latter being subjected to legitimate disagreements requiring deliberation. By revisiting the historical origin of the dead donor rule, including some events that took place in France prior to the report by the Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Brain Death, I want to recall that those who first promoted the DDR did not take into account any scientific rationale to support the new proposed criteria to determine death. Rather, through a process of factual re-semantization, they authorized themselves to decide about the meaning of death in order to implicitly prioritize the interests of organ recipients over those of dying people.
The increasing availability of physician assisted death has opened up a novel means of making donated bodies available for anatomical dissection. This practice has come to the fore in Canada, but is unlikely to be confined to that country as legislation changes in other countries. The ethical considerations raised by this development are placed within the framework of the ethical guidelines on body donation promulgated by the International Federation of Associations of Anatomy (IFAA). The discussion centers on understanding the ethical dimensions of moral complicity, and whether it is accepted or rejected. If rejected it is possible to separate ethical concerns regarding physician assisted death from subsequent use of donated bodies, as long as there is fully informed consent and complete ethical and procedural separation of the two. Openness about the origin of bodies for dissection is essential. Students should be instructed on the nuances of moral complicity, and consideration be given to those with moral doubts about physician assisted death. Two issues are raised in considering whether these moves represent an ethical slippery slope: the attraction represented by obtaining relatively 'high quality' bodies, and the manner in which organ donation following physician assisted death has led to challenges to the dead donor rule. Although body donation raises fewer concerns, the ethical dimensions of the two are similar. The ethical constraints outlined here have the capacity to prevent an ethical slippery slope and constitute a sound basis for addressing an innovative opportunity for anatomists.
Une mère témoigne de la décision qui a été prise de faire don des organes de sa fille Alice, diagnostiquée d'une tumeur au cerveau en très bas âge mais qui a pu vivre jusqu'à ce jour où elle a été victime d'un fatal accident d'équitation. C'est en tout six vies qui ont pu être sauvées grâce à ce choix.
BACKGROUND: Intensive care to facilitate organ donation (ICOD) has been defined as the initiation or continuation of intensive care measures in patients with a devastating brain injury (DBI) in whom treatment for curative purposes is deemed futile, and who are considered possible organ donors, with the aim of offering donation after brain death (DBD) inside their end-of-life care plans. We describe the effect on the donation and transplantation activity of the implementation of ICOD protocol at a university hospital.
METHODS: Retrospective analysis (2015-2018) of demographics and outcomes of all patients with a DBI, in whom ICOD was considered as part of their end-of-life care in Vall d'Hebron University Hospital, Barcelona.
RESULTS: Of the 983 possible donors evaluated, ICOD was considered in 206 (21%), of whom 115 (55.8%) were medically unsuitable for donation. Family consent was obtained for 69 (76%) of the remaining patients. Refusal rate was twice as high when nontherapeutic ventilation was required for organ donation (34%) vs patients previously ventilated (13.6%) (P = .02). Patients subject to ICOD died in a median of 2 days (1-3 d) and 88.4% became actual donors (39 after brain death; 22 after circulatory death). Nine (17.6%) donors were finally not utilized. ICOD contributed to 29% (ranging from 27.7% in 2015 to 31.6% in 2018) of the 208 actual donors and 26% of the 603 organs transplanted.
CONCLUSIONS: ICOD is well-accepted by families and offers the donation option to an increasing number of patients at our hospital. It provides an important and sustained increment of the organ pool for transplantation.
The opportunity for a critically ill patient to be an organ donor depends on a complex interplay of factors (the Donation Process), one of which is the treating medical team's perspective of the importance and priority of donation during end-of-life care. Medical providers frequently are hesitant to administer treatments to preserve organ function in patients whose death is imminent for fear of invoking a conflict of interest. The basis of the perceived conflict is that organ donation is a process done for the sole benefit of organ transplant recipients and not for the donor, and therefore care directed toward donation prior to death is not for the donor patient's benefit. In this report, it is argued that the Donation Process is indeed a patient-centered process for the potential organ donor, and that organ donation serves the donor's best interests. In addition, key elements of the Donation Process are described.
At times, clinical expertise may not be sufficient to find a way out of a moral impasse, especially in the context of end-of-life and organ transplantation decisions. Advances in medical knowledge and technology, and highly pluralistic and multicultural societies, have led to the emergence of new ethical problems in daily clinical practice along with the need to manage them in a prompt and effective manner. Clinical ethics developed in the late 1970s and early 1980s in North American health care contexts with the aim of identifying, analyzing, and attempting to resolve ethical conflicts and dilemmas at the patient's bedside. At present, only a few regions in Italy have established clinical ethics committees, and Italy may count on a very small number of clinical ethics services fully devoted to ethics case consultation, guidelines development, and the education of health care providers and citizens. Despite this situation, one has to acknowledge both the increasing request for ethics support coming from health care providers who experience an "ethical vacuum" in the Italian health care system and the cultural change that is affecting Italy nowadays. By highlighting clinical examples and sharing experiences, we show and encourage the potential benefits of establishing clinical ethics services in Italian health care contexts.
As the national demand for donated organs continues to rise, the rate of registered donors within the United States has remained stagnant, creating a shortage of viable, transferrable organs. Lack of registered donors can be partially attributed to misconceptions about organ donation, which has led to a population less willing to register as organ donors. The utilization of educational interventions can begin to address common misconceptions and change attitudes to favor organ donation. A quantitative pretest, posttest survey design was utilized in order to assess effectiveness of an educational intervention within the college-aged population. Results suggest that educational interventions are effective in creating positive attitudes about organ donation in college-aged students.
The opt-out system (or presumed consent) for end-of-life organ donation is being widely adopted in the United Kingdom. Since presumed consent for organ donation applies only to adults, commentators have recommended the implementation of routine parental request and integration of organ donation in the end-of-life care of children to increase the donor pool and the supply of transplantable organs. The empirical data for this recommendation originated from a survey of parents of deceased children with severe congenital and acquired brain injuries. The demographics of the surveyed parents were not representative of the diverse ethnic and religious affiliations of British society. Here, it is argued that there are unresolved medical, legal, cultural and religious challenges to the routine integration of end-of-life organ donation that can result in harmful consequences for children and parents. To address these challenges: (1) paediatric practice guidelines should be updated to incorporate new advances in the diagnosis and the treatment of severe brain injuries to eliminate potential clinical errors from premature treatment discontinuation and/or incorrect diagnosis of brain(stem) death and (2) a broad societal debate on the legal, cultural and religious consequences of routine integration of end-of-life organ donation in children.
While many people are skeptical that we can harm the dead, much of our discourse depends on it. I defend the claim that we can harm the dead by presenting a new way to think about how the dead can be harmed, and I show that the reasons we can harm the dead shed light on many issues in bioethics, including organ donation, posthumous reproduction, end-of-life decisions, and advance directives for dementia.
In an opinion paper published in this journal, Dr. Ely makes several statements on the legislation and clinical practice with regard to end-of-life care and organ donation in countries with a euthanasia law, that are not only untrue, but involve serious accusations, including the suggestion that physicians might no longer be on the side of healing, and murder. He insinuates that, now or in the near future, incapacitated patients could or will be euthanized for the purpose of organ harvesting, like they were used for protein food in some obscure science fiction novel. It will be clear to most readers that what Dr. Ely describes as imminent practice is indeed fiction.
This special report is published in commemoration of the fiftieth anniversary of the "Report of the Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Brain Death," a landmark document that proposed a new way to define death, with implications that advanced the field of organ transplantation. This remarkable success notwithstanding, the concept has raised lasting questions about what it means to be dead. Is death defined in terms of the biological failure of the organism to maintain integrated functioning? Can death be declared on the basis of severe neurological injury even when biological functions remain intact? Is death essentially a social construct that can be defined in different ways, based on human judgment? These issues, and more, are discussed and debated in this report by leading experts in the field, many of whom have been engaged with this topic for decades.
The removal of organs and tissues is characterized by a high level of stress and can be very traumatic for the nursing team. This study was informed by a grounded theory approach and was based on data drawn from two focus groups with 15 nurses. Main themes centered on factors that modulate the level of stress (first experiences, children donors, doubts about death, organizational factors), and coping strategies (including nurses’ attitudes toward organ donation and training needs). There is a need to implement training for the stress management of the operating nurses and to provide supportive interventions.
Introduction: End of life and organ donation discussions come at a time of acute emotional unrest for grieving relatives. Their attitudes and eventual decisions regarding consent to organ donation are shaped by multiple factors during these stressful periods. At our tertiary centre intensive care unit, we anecdotally observed that the mode of organ donation affects family behaviour as to whether families stay until transfer to theatre for organ recovery, or leave after consenting for donation. We sought to ascertain if this observation was true and then to hypothesise reasons for why this may be the case.
Methods: Records of patients consented for deceased organ donation between 1 January 2015 and 31 December 2017 at the Nottingham University Hospitals NHS Trust were reviewed and analysed.
Results: After exclusion criteria were applied, 91 patient cases were included in the final analysis (donation after brainstem death (DBD), 36; donation after circulatory death (DCD), 55). Thirty-six per cent of DBD families stayed until the point of organ recovery compared to 80% of DCD families (p < 0.00001).
Discussion: We hypothesise that this family behaviour may be indicative of an acceptance in DBD of the patient's death, and therefore that the patient has moved beyond further harm. For this reason, the family may feel able to leave after consent for donation. A greater understanding of how family behaviours differ depending on the mode of organ donation may aid how these families are best cared for in the intensive care unit.