Chapter 1 Ethics, law and communication
The profession has to agree on its collective purpose, aims and standards. People are much more than a collection of symptoms and signs – they have preferences, priorities, fears and hopes. Doctors too are much more than interpreters of symptoms and signs – they also have preferences, priorities, fears and hopes. Ethics is part of practice; it is a practical pursuit.
The study of the moral dimension of medicine is known as medical ethics in the UK, and bioethics internationally. To become and to practise as a doctor requires an awareness of, and reflection on, one’s ethical attitudes. All of us have personal values and moral intuitions. In the field of ethics, a necessary part of learning is to become aware of the assumptions on which these personal values are based, to reflect on them critically, and to listen and respond to challenging or opposing beliefs.
Ethics is commonly characterized as the consideration of big moral questions that preoccupy the media: questions about cloning, stem cells and euthanasia are what many immediately think of when the words ‘medical ethics’ are used. However, ethics pervades all of medicine. The daily and routine workload is also rife with ethical questions and dilemmas: introductions to patients, dignity on the wards, the use of resources in clinic, the choice of antibiotic and the medical report for a third party, are as central to ethics as the issues that absorb the popular representation of the subject.
The study and practice of ethics incorporate knowledge, cognitive skills such as reasoning, critique and logical analysis, and clinical skills. Abstract ethical understanding has to be integrated with other clinical knowledge and applied thoughtfully and appropriately in practice.
Personal views must be taken into account, but other perspectives should be acknowledged and supported by reasoning, and located in an accurate understanding of the current law and relevant professional guidance.
Key ethical theories
Rights theory: assesses morality with reference to the justified claims of others. Rights are either ‘natural’ and arise from being human, or legal, and therefore enforceable in court. Positive rights impose a duty on another to act whilst negative rights prohibit interference by others.
Many doctors find that ethical frameworks and tools which focus on the application of ethical theory to clinical problems are useful. Perhaps the best known is the ‘Four Principles’ approach, in which the principles are:
People respond differently to ethical theories and approaches. Do not be afraid to experiment with ways of thinking about ethics. It is worthwhile understanding other ethical approaches, even in broad terms, as it helps in understanding how others might approach the same ethical problem, especially given the increasingly global context in which healthcare is delivered.
As well as ethical theories and frameworks, there are codes of practice and professional guidelines. For example, in the UK, the standards set out by the General Medical Council (GMC) are the basis on which doctors are regulated within the UK: if a doctor falls below the expectations of the GMC, disciplinary procedures may follow, irrespective of the harm caused or whether legal action ensues. In other countries, similar professional bodies exist to license doctors and regulate healthcare. All clinicians should be aware of the regulatory framework and professional standards in the country within which they are practising.
Increasingly, ethical practice and professionalism are considered significant from the earliest days of medical study and training. In the UK, attention has turned to the standards expected of medical students. For example, in the UK, all medical schools are required to have ‘Fitness to Practise’ procedures. Students should be aware of their professional obligations from the earliest days of their admission to a medical degree. All medical schools are effectively vouching for a student’s suitability for provisional registration at graduation. Medical students commonly work with patients from the earliest days of their training and are privileged in the access they have to vulnerable people, confidential information and sensitive situations. As such, medical schools have particular responsibilities to ensure that students behave professionally and are fit to study, and eventually to practise, medicine.
The Hippocratic Oath, although well-known, is outdated and something of an ethical curiosity, with the result that it is rarely, if ever, sworn. The symbolic value of taking an oath remains, however, and many medical schools expect students to make a formal commitment to maintain ethical standards.
As it pertains to medicine, the law establishes boundaries for what is deemed to be acceptable professional practice. The law that applies to medicine is both national and international, e.g. the European Convention on Human Rights (Box 1.2). Within the UK, along with other jurisdictions, both statutes and common law apply to the practice of medicine (Box 1.3).
European Convention on Human Rights
Substantive rights which apply to evaluating good medical practice
Statutes and common law
The majority of cases involving healthcare arise in the civil system. Occasionally, a medical case is subject to criminal law, e.g. when a patient dies in circumstances that could constitute manslaughter.
Capacity is at the heart of ethical decision-making because it is the gateway to self-determination (Box 1.4). People are able to make choices only if they have capacity. The assessment of capacity is a significant undertaking: a patient’s freedom to choose depends on it. If a person lacks capacity, it is meaningless to seek consent. In the UK, the Mental Capacity Act 2005 sets out the criteria for assessing whether a person has the capacity to make a decision (see Ch. 23, p. 1191).
Principles of self-determinationa
Assessment of capacity is not a one-off judgement. Capacity can fluctuate and assessments of capacity should be regularly reviewed. Capacity should be understood as task-oriented. People may have capacity to make some choices but not others and capacity is not automatically precluded by specific diagnoses or impairments. The way in which a doctor communicates can enhance or diminish a patient’s capacity, as can pain, fatigue and the environment.
Consent is integral to ethical and lawful practice. To act without, or in opposition to, a patient’s expressed, valid consent is, in many jurisdictions, to commit an assault or battery. Obtaining informed consent fosters choice and gives meaning to autonomy. Valid consent is:
Those seeking consent for a particular procedure must be competent in the knowledge of how the procedure is performed and its problems. Whilst it is common and good practice for written information to be provided to patients, the existence of written material and a consent form does not remove the responsibility to talk to the patient. The information given to a patient should be that which a ‘reasonable person’ would require whilst being alert to the particular priorities and concerns of individuals. Information shared should:
Patients should be encouraged to ask questions and express their concerns and preferences. Since it is the health and lives of patients that are potentially at risk, the moral focus of such disclosure should be on what is acceptable to patients rather than to the professionals.
Much medical education and training takes place in the clinical environment. Future doctors have to learn new skills and apply their knowledge to real patients. However, patients must be given a choice as to whether they wish to participate in educational activities. The principles of seeking consent for education are identical to those applied to clinical situations.
Advance decisions (sometimes colloquially described as ‘living wills’) enable people to express their wishes about future treatment or interventions. The decisions are made in anticipation of a time when a person ceases to have capacity. Different countries have differing approaches to advance decision-making and it is necessary to be aware of the relevant law in the area in which one is practising. Within the UK, advance decisions are governed by legislation, for example the Mental Capacity Act 2005 applies in England and Wales. The criteria for a legally valid advanced decision are that it is:
In practice, it is often the requirement of specificity that is most difficult for patients to fulfil because of the inevitable uncertainty surrounding future illness and potential treatments or interventions. There is one difficulty that for many goes to the heart of an ethical objection to advance decision-making, namely that it is difficult to anticipate the future and how one is likely to feel about that future.
An advance decision can be made to refuse treatment and to express preferences, but cannot be used to demand treatment. In general, no patient has the right to demand or request treatment that is not clinically indicated. Therefore it would be inconsistent to allow patients to include in their advance decisions requests for specific treatments, procedures or interventions. An advance decision cannot be used to refuse basic care such as maintaining hygiene.
Advance decisions are made orally or in writing. However, advance decisions on the withdrawal or withholding of life-sustaining treatment must be in written form and witnessed and the decision should state explicitly that it is intended to apply even to life-saving situations. The more informal and nonspecific the advance decision is, the more likely it is to be challenged or disregarded as being invalid. If working in a country where advance decisions are recognized, clinicians should make reasonable attempts to establish whether there is a valid advance decision in place and the presumption is to save life where there is ambiguity about either the existence or content of an advance decision. Advance decisions should be periodically reviewed and amendments, revocations or additions are possible provided that the person concerned still has capacity.
The ethical rationale for the acceptance of advance decisions is usually said to be respect for patient autonomy and represents the extension of the right to make choices about healthcare in the future. True respect for autonomy and the freedom to choose necessarily involves allowing people to make choices that others might consider misguided. Some suggest that giving patients the opportunity to express their concerns, preferences and reservations about the future management of their health fosters trust and effective relationships with clinicians. However, it could also be argued that none of us will ever have the capacity to make decisions about our future care because the person we become when ill is qualitatively different from the person we are when we are healthy.
Many countries allow for the appointment of a proxy, or for a third party, to make substituted judgements for people lacking capacity. In England and Wales, consent or refusal can be expressed by someone who has been granted a lasting power of attorney (LPA). Once a person’s lack of capacity has been registered with the Public Guardian and the lasting power of attorney granted, the person holding the power of attorney is charged with representing a patient’s best interests. Therefore, it is imperative to establish whether there is a valid LPA in respect of an incapacitous patient and to adhere to the wishes of the person acting as attorney. The only circumstances in which clinicians need not follow the LPA is where the attorney appears not to be acting in the patient’s best interests. In such situations, the case should be referred to the Court of Protection. Like advance decisions, the ethical rationale for the existence of LPAs is that prospective autonomy is desirable and facilitates informed care, rather than second-guessing patient preferences.
Where an adult lacks capacity to give consent, and there is no valid advance decision or power of attorney in place, clinicians are obliged to act in the patient’s best interests. This encompasses more than an individual’s best medical interests. In practice, the determination of best interests is likely to involve a number of people, for example members of the healthcare team, professionals with whom the patient had a longer-term relationship, and relatives and carers.
In England and Wales, an Independent Mental Capacity Advocacy Service provides advocates for patients who lack capacity and have no family or friends to represent their interests. ‘Third parties’ in such a situation, including Independent Mental Capacity Advocates, are not making decisions; rather, they are being asked to give an informed sense of the patient and his or her likely preferences. In some jurisdictions, e.g. in North America, clinical ethicists play an advocacy role and seek to represent the patient’s best interests.
A common situation requiring determination of a patient’s best interests is the provision of life-sustaining treatment, often at the end of life, for a patient who lacks capacity and has neither advance decision nor an attorney. It is considered acceptable not to use medical means to prolong the lives of patients where:
Moral and religious beliefs vary widely and, in general, decisions not to provide or continue life-sustaining treatment should always be made with as much consensus as possible amongst both the clinical team and those close to the patient. Where there is unresolvable conflict between those involved in decision-making, a court should be consulted. In emergencies in the UK, judges are always available in the relevant court.
Where clinicians decide not to prolong the lives of imminently dying and/or extremely brain-damaged patients, the legal rationale is that they are acting in the patient’s best interests and seeking to minimize suffering rather than intending to kill, which would constitute murder. In ethical terms, the significance of intention, along with the moral status of acts and omissions, is integral to debates about assisted dying and euthanasia.
Currently in many countries, there is no provision for lawful assisted dying. For example, physician-assisted suicide, active euthanasia and suicide pacts are all illegal in the UK. In contrast, some jurisdictions, including the Netherlands, Switzerland, Belgium and certain states in the USA, permit assisted dying. However, even where assisted dying is not lawful, withholding and withdrawing treatment is usually acceptable in strictly defined circumstances, where the intention of the clinician is to minimize suffering, not to cause death. Similarly, the doctrine of double effect may apply. It enables clinicians to prescribe medication that has as its principal aim, the reduction of suffering by providing analgesic relief but which is acknowledged to have side-effects such as the depression of respiratory effort (e.g. opiates). Such prescribing is justifiable on the basis that the intention is benign and the side-effects, whilst foreseen, are not intended to be the primary aim of treatment. End-of-life care pathways, which provide for such approaches where necessary, are discussed in Chapter 10.
Although assisted dying is unlawful in the UK, the Director of Public Prosecutions (DPP) has issued guidance on how prosecution decisions are made in response to a request from the courts, following an action brought by Debbie Purdy. Thus, there are now guidelines that indicate what circumstances are likely to weigh either in favour of, or against, a prosecution. Nevertheless, the law itself is unchanged by the DPP’s guidance: for a clinician to act to end a patient’s life remains a criminal offence.
The vast majority of people being treated for psychiatric illness have capacity to make choices about healthcare. However, there are some circumstances in which mental illness compromises an individual’s capacity to make his or her own decisions. In such circumstances, many countries have specific legislation that enables people to be treated without consent on the basis that they are at risk to themselves and/or to others.
People who have, or are suspected of having, a mental disorder may be detained for assessment and treatment in England and Wales under the Mental Health Act 2007 (which amended the 1983 statute). There is one definition of a mental disorder for the purposes of the law: The Mental Health Act 2007 defines a mental disorder as ‘any disorder or disability of the mind’. Addiction to drugs and alcohol is excluded from the definition. Appropriate medical treatment should be available to those who are admitted under the Mental Health Act. In addition to assessment and treatment in hospital, the legislation provides for Supervised Community Treatment Orders, which consist of supervised community treatment after a period of detention in hospital. The law is tightly defined with multiple checks and limitations which are essential given the ethical implications of detaining and treating someone against his or her will.
Even in situations in which it is lawful to give a detained patient psychiatric treatment compulsorily, efforts should be made to obtain consent if possible. For concurrent physical illness, capacity should be assessed in the usual way. If the patient does have capacity, consent should be obtained for treatment of the physical illness. If a patient lacks capacity because of the severity of a psychiatric illness, treatment for physical illness should be given on the basis of best interests or with reference to a proxy or advance decision, if applicable. If treatment can be postponed without seriously compromising the patient’s interests, consent should be sought when the patient once more has capacity.
Where a child does not have the capacity to make decisions about his or her own medical care, treatment will usually depend upon obtaining proxy consent. In the UK, consent is sought on behalf of the child from someone with ‘parental responsibility’. In the absence of someone with parental responsibility, e.g. in emergencies where treatment is required urgently, clinicians proceed on the basis of the child’s best interests.
Sometimes parents and doctors disagree about the care of a child who is too young to make his or her own decisions. Here, both national and European case law demonstrates that the courts are prepared to override parental beliefs if they are perceived to compromise the child’s best interests. However, the courts have also emphasized that a child’s best medical interests are not necessarily the same as a child’s best overall interests. Whenever the presenting patient is a child, clinicians are dealing with a family unit. Sharing decisions, and paying attention to the needs of the child as a member of a family, are the most effective and ethical ways of practising.
As children grow up, the question of whether a child has capacity to make his or her own decisions is based on principles derived from a case called Gillick v. West Norfolk and Wisbech Area Health Authority, which determined that a child can make a choice about his or her health where:
The Gillick case recognized that children differ in their abilities to make decisions and established that function, not age, is the prime consideration when considering whether a child can give consent. Situations should be approached on a case-by-case basis, taking into account the individual child’s level of understanding of a particular treatment. It is possible (and perhaps likely) that a child may be considered to have capacity to consent to one treatment but not another. Even where a child does not have capacity to make his or her own decision, clinicians should respect the child’s dignity by discussing the proposed treatment even if the consent of parents also has to be obtained.
In the UK, once a child reaches the age of 16, the Mental Capacity Act 2005 states that he or she should be treated as an adult save for the purposes of advance decision-making and appointing a lasting power of attorney.
Confidentiality is essential to therapeutic relationships. If clinicians violate the privacy of their patients, they risk causing harm, disrespect autonomy, undermine trust, and call the medical profession into disrepute. The diminution of trust is a significant ethical challenge, with potentially serious consequences for both the patient and the clinical team. Within the UK, confidentiality is protected by common and statutory law. Some jurisdictions make legal provision for privacy. Doctors who breach the confidentiality of patients may face severe professional and legal sanctions. For example, in some jurisdictions, to breach a patient’s confidentiality is a statutory offence.
Patients should understand that information about them will be shared with other clinicians and healthcare workers involved in their treatment. Usually, by giving consent for investigations or treatment, patients are deemed to give their implied consent for information to be shared within the clinical team. Very rarely, patients might object to information being shared even within a team. In such situations, the advice is that the patient’s wish should be respected unless it compromises treatment. In almost all clinical circumstances, therefore, the confidentiality of patients must be respected. Unfortunately, confidentiality can be easily breached inadvertently. For example, clinical conversations take place in lifts, corridors and cafes. Even on wards, confidentiality is routinely compromised by the proximity of beds and the visibility of whiteboards containing medical information. Students and doctors should be alert to the incidental opportunities for breaches of confidentiality and seek to minimize their role in unwittingly revealing sensitive information.
The duty of confidence is not absolute. Sometimes, the law requires that clinicians must reveal private information about patients to others, even if they wish it were otherwise (Box 1.5). There are also circumstances in which a doctor has the discretion to share confidential information within defined terms. Such circumstances highlight the ethical tension between the rights of individuals and the public interest.
Examples of circumstances in which a doctor is required to share confidential information
These three categories are useful as a framework within which to think about the extent of the duty of confidentiality and they also require considerable ethical discretion in practice, particularly in relation to situations where sharing confidential information might be considered to be in the ‘public interest’. In England and Wales, there is legal guidance on what constitutes sufficient ‘public interest’ to justify sharing confidential information, which is derived from the case of W v. Egdell. In that case, the Court of Appeal held that only the ‘most compelling circumstances’ could justify a doctor acting contrary to the patient’s perceived interest in the absence of consent. The court stated that it would be in the public interest to share confidential information where:
Consent should be sought wherever possible, and disclosure on the basis of the ‘public interest’ should be a last resort. Each case must be weighed on its own individual merits and a clinician who chooses to disclose confidential information on the ground of ‘public interest’ must be prepared to justify his or her decision. Even where disclosure is justified, confidential information must be shared only with those who need to know.
If there is perceived public interest risk, does a doctor have a duty to warn? In some jurisdictions, there is a duty to warn but in England and Wales, there is no professional duty to warn others of potential risk. The judgement of W v. Egdell provides a justification for breaches of confidence in the public interest but it does not impose an obligation on clinicians to warn third parties about potential risks posed by their patients.
Resources should be considered broadly to encompass all aspects of clinical care, i.e. they include time, knowledge, skills and space, as well as treatment. In circumstances of scarcity, waste and inefficiency of any resource are of ethical concern.
Access to healthcare is considered to be a fundamental right and is captured in international law since it was included in the Universal Declaration of Human Rights. However, resources are scarce and the question of how to allocate limited resources is a perennial ethical question. Within the UK, the courts have made it clear that they will not force NHS Trusts to provide treatments which are beyond their means. Nevertheless, the courts also demand that decisions about resources must be made on reasonable grounds.
Both ethically and legally, prejudice or favouritism is unacceptable. Methods for allocating resources should be fair and just. In practice, this means that scarce resources should be allocated to patients on the basis of their comparative need and the time at which they sought treatment. It is respect by clinicians for these principles of equality – equal need and equal chance – that fosters fairness and justice in the delivery of healthcare. For example, a well-run Accident and Emergency Department will draw on the principles of equality of need and chance to: