Introduction

The history of transplantation is relatively brief at 40–50 years compared with the history of medicine, and the unique processes involved in this branch of medicine continue to surprise and challenge conventional medical and ethical doctrine. Many of the ethical dilemmas surrounding transplantation centre on the twin peaks of procurement and allocation. The questions of ‘how do we get organs’ and ‘who should receive them’ permeate all aspects of transplantation ethics and clinical practice. Indeed, ethics is an important part of medical education as acknowledged by the General Medical Council’s publication Tomorrow’s Doctors, which placed ethics squarely in the core curriculum for medical training so that doctors would be able ‘to understand and analyse ethical problems so as to enable patients, their families, society, and the doctor to have proper regard to such problems in reaching decisions’.¹

This chapter will outline the foundations of modern ethical principles and then discuss two controversial areas: conditional and directed donation; and payment for organ donation and transplant tourism.

Systems and principles in medical ethics and bioethics

The ethical basis of Western medicine is characterised by a number of traditions,² which find expression in codes of practice and in the culture of healthcare workers. Prominent amongst these are the deontological (duty-based) and the utilitarian (consequence-based) traditions.

The deontological tradition ³ stresses the duties of practitioners and the rights of patients. Many codes³ of practice, such as the Hippocratic Oath, the Declaration of Geneva and the General Medical Council Statements⁴ on ‘Duties and Responsibilities of Doctors’, are of this tradition. There is a strand of rational, universalising deliberation within deontology that may, in some circumstances, seem uncompromising and excessively rigid. Clinicians ‘ought’ to act in particular ways because this is ‘right’, often irrespective of the consequences. Any act should be capable of being expressed as a universal law. The great strength of the deontological tradition is its stress on the autonomy of the patient and on the primacy of doctor–patient relationships. It asserts that individuals should always be viewed as ends in themselves, never as means to an end. Its weakness is in application. ‘Absolute’ principles that are contradictory may co-present in particular circumstances (e.g. ‘never cause pain’, ‘always preserve life’ – what if life-saving interventions cause pain?).

On the other hand, the utilitarian tradition ³ aspires always to do that which leads to a ‘good’ or ‘best’ outcome. It is commonly paraphrased as ‘Seek the greatest good for the greatest number’. If the ‘right’ action does not lead to the ‘best’ outcome then it should be reviewed or abandoned. The necessity for rationing of healthcare resources brings utilitarian analyses into particular prominence. On occasion, the individual may be the ‘loser’ in the greater scheme of things – a common criticism of this approach.

It is important to remember that utilitarian analysis can be applied to an individual case – what is in a patient’s, as opposed to all patients’, best interests (or will lead to the best outcomes)? Two strands may be identified – ‘rule’ utilitarianism and ‘act’ utilitarianism. ‘Rule’ utilitarianism weighs up the consequences of acting according to a general moral rule (e.g. that patients over 65 years with type II diabetes should never receive transplants as the long-term survival of this group is likely to be less than that of a younger non-diabetic group). ‘Act’ utilitarianism weighs up the consequences of a particular act (e.g. deciding not to proceed with living donation in a case where there is a high risk of recurrence of a primary disease in the recipient).

It is important to stress that these traditions are not opposite ways of viewing and acting upon ethical dilemmas. Most analyses will show that they tend to derive the same conclusions when ‘working’ moral issues are at stake.

“The medical profession has long subscribed to a body of ethical statements developed primarily for the benefit of the patient. As a member of this profession, a physician must recognise responsibility to patients first and foremost, as well as to society, to other health professionals, and to self.”

Principles of Medical Ethics, American Medical Association

Both traditions have a strong flavour of universalisation. However, as all ethical analyses ultimately focus on particular cases, the importance of context may well have been understated in the past. Some current intellectual traditions, notably existentialism, situation ethics and postmodernism,³ are less convinced of the existence of general laws/principles that can be applied to particular cases. Rather, they focus on how to solve specific problems as they arise and are open to the insights of other religious, racial, philosophical and cultural traditions. The principal criticism of these traditions is that moral relativism may easily drift into moral anarchy (although, of course, moral absolutism may similarly drift into moral fascism).

In real life, we recognise a spectrum between cases in which context and situation need to be the dominant consideration and those in which universally derived general principles can be applied. No one tradition or perspective is ‘more correct’ – they offer different perspectives to problem solving.

Principles

A number of prima facie principles (commonly distilled to four) are widely accepted as forming the bedrock of medical ethics.^3,⁴ As we shall see, in individual cases there is often conflict between the simultaneous adherence to all of these. Depending on the context (and on whether a deontological or utilitarian approach is favoured), a ‘least unsatisfactory’ trade-off between principles must be negotiated or achieved. Skill in identifying and achieving the best balance is that which characterises best practice in dealing with moral dilemmas.

1 Beneficence: doing good ^3,⁴

A central tenet of medical ethics is the obligation to strive at all times to do good for the patient. Deontologists view this as a universal moral duty, utilitarians as achieving the universally desired best outcome. It is instructive to reflect upon the secondary obligations that follow from acceptance of this principle. Beneficence demands competence. Accreditation and continuing medical education are central to this, as are elements such as professional development, clinical and basic research, and audit. Transplant programmes with clinical governance processes in place are expressing vigorous adherence to this principle. Communication skills are vital – weighing up possible outcomes is one thing, sharing them with the patient and negotiating choices quite another.

2 Non-maleficence: avoiding harm ^3,⁴

Since the days of Hippocrates, clinicians have endorsed the principle of Primum non nocere (‘First, do no harm’). All interventions, however well intentioned, may cause harm. Making sure that the balance between benefit and harm is appropriate is an important clinical judgement. In the past, professional decisions (i.e. that the balance achieved by a particular course of action was acceptable) often paid scant attention to the patients’ perspectives of the balance. This might be called paternalism – classically according predominant weight to clinicians’ judgement on the balance between beneficence and non-maleficence, with little weight given to patient autonomy.

The other end of the spectrum is where overwhelming emphasis is placed on respect for patient autonomy, with little reflection on professional judgement of beneficence/non-maleficence trade-offs. This is equally undesirable and might be called consumerism.

3 Respect for autonomy ³^–⁵

Individuals should be treated as ends, not as means. Respect for the dignity, integrity and authenticity of the person is a basic human right. Deriving from this principle are the important issues of consent and confidentiality. Patients with capacity to understand relevant information (explained in broad terms and with simple language), to consider its implications in terms of their own values, and come to a communicable decision, are deemed to have decision-making capacity. (The legal default is that conscious adults are assumed to have capacity unless evidence to the contrary can be advanced.) Some patients, because of transient or irreversible cognitive impairment, may not have this capacity. It is important to note that even a decision that seems irrational to the physician must be respected if the patient has decision-making capacity. The issue is more complex regarding children under 16 years.

Informed consent is central to the doctor–patient relationship. Its definition is difficult – in countries such as Australia and Canada there is a legal duty to provide patients with information that a prudent or reasonable patient, in that patient’s particular circumstances, would wish to know in order to arrive at a decision. In the UK, the amount of information that a reasonable doctor would provide, in that patient’s particular circumstances, is required.⁶ (However, a court might decide that, in unusual circumstances, failure to disclose certain risks of procedures might be negligent, even if this is accepted practice as attested by a responsible body of medical opinion.) Information about certain possible risks may be retained under so-called therapeutic privilege, if it is honestly felt that this would needlessly harm the patient psychologically (justified by an ‘act’ utilitarian attitude with heavy emphasis on non-maleficence). This privilege cannot be invoked when informed consent to participation in a research study is being obtained – for obvious reasons. No overt or covert pressure to consent should exist. Many guidelines⁶ exist to help deal with difficulties in obtaining consent.

In the case considered in Box 1.1 it could be argued that transplantation in an individual who has expressed, by his actions, a wish to die is a breach of his autonomy. In general terms, interventions made when patients do not have the capacity to offer consent should follow certain principles. Any advance directives should be consulted; persons with knowledge of the patient’s previous views should be consulted for their insight into the possible choices that the patient might have made were he able to participate. Family cannot consent to any procedure on his behalf, unless there is a legal guardianship in existence. The decision as to how best to proceed should be taken by the doctor with overall responsibility for the case. Choices should be limited to those that are in the patient’s best interests and that least limit the patient’s future choices should he regain the capacity to consent. In this situation the clinicians have used the principle of beneficence to justify the act of transplantation, in the hope that the attempt at self-harm was, at best, accidental or, at worst, not intended to result in death. A utilitarian perspective might argue against transplantation in this situation, giving priority in the allocation of organs to individuals who have unequivocally expressed a desire to live. Alternatively, it could be argued that the circumstances precipitating this act of self-harm are transient or that the normal mental state of the individual may have been temporarily disturbed. This could respond to a change in circumstances or to treatment with appropriate counselling or medications. In this unusual scenario, the reiteration by the patient that he wishes to die, and his refusal to continue with treatment necessary to keep the transplant functional, presents a complex matrix of interaction between differing principles. If he has regained the capacity to consent, then his autonomy must be respected. On the other hand, this should prompt a discussion as to the reasons why the original choice was made. Beneficence and non-maleficence may prompt the clinicians strongly to counsel him to continue with treatment. It should be pointed out (in the spirit of justice) that he has received a scarce resource and that a range of individuals have done their best to make the right choice for him. One might wish to use this as a pragmatic ‘emotional lever’ in the discussion – however, primacy must be given to his autonomy.

Box 1.1 Case history

A 23-year-old man has developed fulminant hepatic failure after taking an overdose of paracetamol following the breakdown of a long-term relationship. This is his first attempt at self-harm and after consultation with his family he is listed for urgent liver transplantation. A donor organ becomes available and the transplant is successful. During the recovery period the recipient expresses his dismay at having received a transplant. He states that he still wishes to die and refuses to take his immunosuppressive medication.