1 • Clinical transplantation remains a relatively young field, yet it has created considerable ethical debate. Development of clinical programmes has required the rapid parallel development of ethical frameworks to justify the steps taken in the name of patient benefit. • In many ways, the rate of technological advance has exceeded the development of the ethical, cultural and legal framework within which transplantation takes place. This has resulted in a variety of fascinating ethical debates but also represents a barrier to fully realising the potential of transplantation. • All transplant professionals have a responsibility to be aware of the many ethical issues that surround transplantation and organ donation. It is also desirable for such professionals to be familiar with the terminology used to describe and discuss the ethics of transplantation. • Good ethical practice should always be integral to efforts made to advance the science of transplantation. Interaction with stakeholders, lawmakers and those who determine public policy will be essential to the development of optimal future programmes. Fundamental principles of bioethics Beneficence Doing good for the patient must be the central moral objective for all healthcare staff. Non-maleficence All effort must be made to avoid causing harm or distress to patients and their families. A central principle in organ donation is that donors are by definition ‘harmed’ in order to facilitate donation. This harm must be weighed up against the good that results from transplantation. Autonomy The patient’s autonomy must be respected. The individual has a (near) absolute right to determine their own fate – including that of their organs after death. Justice Healthcare professionals should strive to seek fairness. Particularly relevant to transplantation where multiple conflicts of interest exist between various stakeholder groups. Deontology From the Greek ‘deon’ meaning obligation or duty. The ethical position which judges the morality of an action or belief on its adherence to a rule, e.g. ‘do no harm’ or ‘always strive to save a life’. Consequentialism Contrasts with deontology; judging the morality of actions according to their consequences. Utilitarianism The ethical position that the value of a particular course of action is determined by how much ‘good’ or happiness results, the total ‘good’ usually referring to the world as a whole. Altruism In a transplant context, the voluntary wish of the individual to make the ‘gift’ of donation of their organs (or equivalent) without expectation of reward. Dignity A complex and difficult term to define but, in this context, one reflecting the unique and precious status of the human being and the ethical requirement not to treat the individual disrespectfully or harmfully in both life and death. Futility A concept that relates to a patient who has reached a point when there is no realistic prospect of a successful outcome, whatever their medical care. Equity The concept of fairness/justice often used in connection with the way organs are allocated and utilised. Also applied to access to transplant for different individuals. Substantial ethical debate surrounds the exact definition of death and this is reflected in the variability of definition between societies.1,2 Standard clinical tests for the certification of death include the absence of circulation, respiration, any response to pain or pupillary response to light. However, these tests require a valid setting and need to be confirmed over a sufficient length of time in order to ensure no reasonable possibility of spontaneous reversal. Brain stem death3 allowed certification of death based on irreversible loss of brain stem function. This complex and intensively scrutinised mechanism for individuals to be declared legally dead has allowed organ donation even when the donor has a beating heart and viable organs maintained via mechanical ventilation. The key ethical principle is that donation should proceed only after death has been established and no prospect of spontaneous autoresuscitation exists.4 The idea of brain death remains a focus for ethical debate despite its long enshrinement in law. Initially the term ‘brain dead’ was applied, yet the demonstration of viable neuronal tissue was cited as a refutation of this as a valid state of death. This led to a change of terminology, with ‘brain stem dead’ being the currently accepted expression.5 Guidance on the determination and diagnosis of death can be found in the Academy of Royal Colleges Code of Practice for the Diagnosis and Confirmation of Death (2008);6 however, there remains no statutory definition of death in the UK and the working definition, ‘the irreversible loss of the capacity for consciousness combined with irreversible loss of the capacity to breathe’, put forward by the Department of Health, seems both practicable and socially acceptable. However, further clarification of this definition may be of benefit to all stakeholders. In a situation where organ donation may be feasible, what constitutes a potential donor’s best interests? Before organ donation and transplantation, it was accepted that when a stage of futility was deemed to have been reached, further life-prolonging interventions were not in a dying patient’s best interests. This was observed in the early days of transplantation, when continuing intervention was seen as unethical as these interventions were not designed for the benefit of the potential donor. This debate was particularly fierce around the issue of elective ventilation, with a historical conclusion that this was not an ethically desirable course of action.7 However, the nature of futility itself may have been changed by the very existence of the possibility for organ donation. Few citizens in the developed world are unaware that donation of organs after death is a possibility. In the UK, originally through the organ donor card system and more recently through the organ donor register (ODR), the opportunity to document one’s wishes relating to organ donation has become increasingly accessible. This opt-in system has donor autonomy at its heart. In states like Spain, however, opt-out is the legal norm,8 when the individual must record a wish to opt out of organ donation or it will be assumed that the wish is to go ahead with this action. Other options such as mandated choice come somewhere in between, and the desirability and likely effect on donation rates of each system are widely debated.9 What is certain, though, is that the stated, informed and autonomous wish of a competent, living person to donate their organs can be regarded as a form of mandate to advance organ donation, even if this action may include interventions traditionally considered futile and therefore unethical. In the UK, the Human Tissue Act (2004) and Human Tissue (Scotland) Act (2006) legally sanction ‘the minimum’ necessary steps to preserve organs in a state that allows successful donation.10,11 The principles of non-maleficence and individual dignity suggest that ethically only the least invasive methods and steps should be taken to preserve organs after death. It must be recognised that advancing technology may redefine and perhaps increase the ‘minimum’ necessary steps. Additionally, the overall process of donation should also respect the individual’s right to continuity of care, particularly with reference to access for relatives and communication/explanation of events. • facilitation of the individual’s autonomous wish to donate their organs (as discussed above); • the right (and/or desire) for a dignified death – including the presence of the next of kin; • the societal responsibility to optimise the quality of the organ donated by the individual’s altruism. Clinical protocols and individual conduct have evolved – and continue to evolve – to reflect a balance between these factors. As noted above, different legislatures across the globe have approached the individual’s right to request organ donation by framing laws that are generally based on one of two principles. ‘Opt-in’ requires that the individual somehow records or comments, during life, that they would wish to be a potential organ donor. The opt-out system assumes that the individual does want to be a donor, given the appropriate circumstances at the time of their death, unless they have specifically opted out of the state organ donation system. Nuances apply in different countries. For instance, in Scotland, which has a slightly different law to the rest of the UK, the Human Tissue (Scotland) Act 200611 enshrines the concept of authorisation for donation that does not insist upon full informed consent but accepts that an individual may wish to indicate their advance directive towards organ donation. In such circumstances, the registration of a citizen on an organ donor register has much greater legal force and, at least in theory, carries legal primacy over the wishes of the next of kin. However, over a 5-year period from 2005 to 2010, 7.1% of all cases of potential deceased donation in the UK had a full or partial caveat placed on the organ donation process by relatives. No organ donation/transplant clinician would directly countermand the views of relatives in this difficult situation and it is, of course, quite possible that an individual might have rescinded their views, expressed on something such as an organ donor register, and it would then be expected that the next of kin would be the conduit for such a change of view coming to light. However, the likelihood is that the family member is countermanding the views of their loved one for a whole host of different reasons, including their own understanding of organ retrieval and donation. Even in countries with an opt-out system, it would be highly unusual for donation to proceed in the face of strong objection from a next of kin.12 The experience and expertise of the UK Specialist Nurse in Organ Donation (SNOD) network is central to the successful negotiation of this difficult situation. Evidence suggests that the approach regarding donation to relatives following death of their loved one is actually most often a comfort and rarely the cause of additional distress.12,13 This is clearly the case in the Netherlands and Spain, where uncontrolled DCD is well established.14 The cultural acceptability of this donation pathway in the UK remains to be confirmed on a large scale. Uncontrolled DCD cannot proceed successfully without employing external preservation measures designed to maintain organ quality. These include external mechanical chest compression, in situ peritoneal cooling or, more recently, in situ perfusion of organs via a femoral cannula.15 These interventions must be instigated rapidly, frequently before the next of kin can be consulted. The Organ Donor Register provides a valuable resource in the context of uncontrolled DCD. If an individual has documented their desire to donate, pre-consent preservative measures can be ethically justified as the patient’s autonomy will have been respected. Ethical concerns exist regarding the potential for preservative measures to restore cerebral circulation. Such restoration can create a grey area in which the status of the potential donor as truly dead may be in question.16 This returns us to the problem of the definition of death. DBD donors may have excellent cerebral blood supply but are deemed to be unequivocally dead, so cerebral perfusion per se is clearly not ethically incompatible with death and donation. This area of controversy must be further clarified to allow protocols that ensure unambiguity of the state of death and that ensure that ethical concerns regarding cerebral reperfusion are adequately considered. Of course, the problem may be with the preservation method and not the definition of death. In certain societies, the routine use of organs from executed prisoners has been documented.17 The majority of transplant professionals would regard this as morally highly dubious; less extreme examples of potential donors and their ethical acceptability continue to provoke debate. In certain European societies, assisted suicide is legal and it has been possible for such individuals to become organ donors.18 Assisted suicide is illegal in the UK but this may not always be the case and changes in law around the care of individuals at the end of life often have significant implications for transplantation. The term ‘persistent vegetative state’ (PVS) is a concept that falls outside the current legal definition of brain stem death, yet is a state of such severe cerebral injury that its nature provokes debate around the definition of death. Some would argue that to remove organs from such individuals would constitute murder. Others argue that life is defined by the capability of the individual to interact with the wider world and that, given individuals in a PVS are incapable of this, they should be regarded as dead and therefore as potential deceased donors.19 These extreme examples are currently the province of the philosophical world. If clinical transplantation has proved anything in its short lifetime, it is that what seems purely abstract and philosophical can very quickly become material to everyday decisions.
Controversies in the ethics of organ transplantation
Introduction
Key terminology
Other terms
Death, organ donation, patient autonomy and the choice to donate
When does death occur?
Futility, the patient’s best interests, and the decision to withdraw life-sustaining treatments
Donor pain, distress and individuals’ rights after death
The conflict between donation and dignity in death
Relatives’ right to veto the act of organ donation
Early approach to the bereaved
Pre-consent preservation measures
Preservation measures and the potential to restore cerebral circulation
The extremes of deceased donation
Stay updated, free articles. Join our Telegram channel