Capacity

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).

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

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:

Advance decisions

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.

Best interests of patients who lack capacity

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.

Mental health and consent

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.

Consent and children

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.

Respecting confidentiality in practice

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.

When confidentiality must or may be breached

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.

Aside from legal obligations, there are three broad categories of qualifications that exist in respect of the duty of confidentiality, namely:

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.

Fairness

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:

People should not be denied potentially beneficial treatments on the basis of their lifestyles. Such decisions are almost always prejudicial. For example, why single out smokers or the obese for blame, as opposed to those who engage in dangerous sports? Patients are not equal in their abilities to lead healthy lives and to make wise healthcare choices.

Education, information, economic worth, confidence and support are all variables that contribute to, and socially determine health and wellbeing. As such, to regard all people as equal competitors and to reward those who in many ways are already better off, is unjust and unfair.

Global perspectives

Increasingly, resource allocation is being considered from an international or global perspective. Beyond the boundaries of the NHS and the borders of the UK, the moral questions about the availability of, and access to, effective healthcare are rightly attracting the attention of ethicists and clinicians. Anyone who is training for, or working in, medicine in the 21st century should consider fundamental moral questions about resource allocation, in particular those being raised by issues such as:

Standards and the law

In most countries, the law provides the statutory framework within which the medical profession is regulated. For example, in the UK, it is the function of the GMC to maintain the register of medical practitioners, provide ethical guidance, guide and quality assure medical education and training, and conduct fitness to practise procedures. Therefore it is the GMC that defines standards of professional practice and has responsibility for investigation when a doctor’s standard of practice is questioned.

Clinicians have a responsibility not only to reflect on their own practice, but also to be aware of and, if necessary, respond to the practice of colleagues even in the absence of formal ‘line management’ responsibilities. In England and Wales, for example, the Public Interest Disclosure Act 1998 provides statutory protection for those who express formal concern about a colleague’s performance, provided the expression of concern:

Clinical negligence

Negligence is a civil claim where damage or loss has arisen as a result of an alleged breach of professional duty such that the standard of care was not, on the balance of probabilities, that which could be reasonably expected.

Of the components of negligence, duty is the simplest to establish: all doctors have a duty of care to their patients (although the extent of that duty in emergencies and social situations is uncertain and contested in relation to civil law). Whether a doctor has discharged his or her professional duty adequately is determined by expert opinion about the standards that might reasonably be expected and his or her conduct in relation to those standards. If a doctor has acted in a way that is consistent with a reasonable body of his peers and his actions or omissions withstand logical analysis, he or she is likely to meet the expected standards of care. Lack of experience is not taken into account in legal determinations of negligence.

The commonest reason for a negligence action to fail is causation, which is notoriously difficult to prove in clinical negligence claims. For example, the alleged harm may have occurred against the background of a complex medical condition or course of treatment, making it difficult to establish the actual cause.

Clinical negligence remains relatively rare and undue fear of litigation can lead to defensive and poor practice. All doctors make errors and these do not necessarily constitute negligence or indicate incompetence. Inherent in the definition of incompetence is time, i.e. on-going review of a doctor’s practice to see whether there are patterns of error or repeated failure to learn from error. Regulatory bodies and medical defence organizations recommend that doctors should be honest and apologetic about their mistakes, remembering that to do so is not necessarily an admission of negligence (see p. 14). Such honesty and humility, aside from its inherent moral value, has been shown to reduce the prospect of patient complaints or litigation.

Professional bodies

Professional bodies have diverse but often overlapping roles in developing, defining and revising standards for doctors. The principal publications in which the GMC sets out standards and obligations relating to competence and performance, are ‘Duties of a Doctor’ and ‘Good Medical Practice’.

Policy

There have been an exponential number of policy reforms that have shaped the ways in which the medical competence and accountability agendas have evolved. One of the most notable is the increase in the number of organizations concerned broadly with ‘quality’ and performance. The increased scrutiny of doctors’ competence has found further policy translation in the development of appraisal schemes and the revalidation process. There have been other policy initiatives that adopt the rhetoric of ‘quality’ such as increased use of clinical and administrative targets, private finance initiatives and the development of specialist screening facilities and treatment centres.

The issue of professional accountability in medicine is a hot topic. The law, professional guidance and policy documentation provide a starting point for clinicians. Complaints and possible litigation are often brought by patients who feel aggrieved for reasons that may be unconnected with the clinical care that they have received. When patients are asked about their decisions to complain or to sue doctors, it is common for poor communication, insensitivity, administrative errors and lack of responsiveness to be cited as motivation (see p. 7). There is less to fear than doctors sometimes believe. The courts and professional bodies are neither concerned with best practice, nor with unfeasibly high standards of care. What is expected is that doctors behave in a way that accords with the practice of a reasonable doctor – and the reasonable doctor is not perfect. As long as clinicians adhere to some basic principles, it is possible to practise defensible rather than defensive medicine. It should be reassuring that complaints and litigation are avoidable, simply by developing and maintaining good standards of communication, organization and administration – and good habits begin in medical school. In particular, effective communication is a potent weapon in preventing complaints and, ultimately, encounters with the legal and regulatory systems.

What is patient-centred communication?

Patient-centred communication involves reaching a common ground about the illness, its treatment, and the roles that the clinician and the patient will assume (Fig. 1.1). It means discovering and connecting both the biomedical facts of the patient’s illness in detail and the patient’s ideas, concerns, expectations and feelings. This information is essential for diagnosis and appropriate management and also to gain the patient’s confidence, trust and involvement.

Figure 1.1 The patient-centred clinical interview.

(Adapted from: Levenstein JH. In: Stewart M, Roter D, eds. Communicating with Medical Patients. Thousand Oaks, CA: Sage; 1989, with permission.)

The traditional approach of ‘doctor knows best’ with patients’ views not being considered is very outdated. This change is spreading worldwide and is not just societal but driven by evidence about improved health outcome. There are three main reasons for this:

Patient-centred communication requires a good balance between:

What are the effects of communication?

Enormous benefits accrue from good communication (Box 1.6). Patients’ problems are identified more accurately and efficiently, expectations for care are agreed and patients and clinicians experience greater satisfaction. Poor communication results in missed problems (Box 1.7) and concerns, strained relationships, complaints and litigation.

Barriers and difficulties in communication

Communication is not straightforward (Box 1.9). Time constraints can prevent both doctors and patients from feeling that they have each other’s attention and that they fully understand the problem from each other’s perspective. Underestimation of the influence of psychosocial issues on illness and their costs to healthcare means clinicians may resort to avoidance strategies when they fear the discussion will unleash emotions too difficult to handle, upset the patient or take too much time (Box 1.10).

1. Building a relationship

Because patients are frequently anxious and may feel unwell, introductions and first impressions are critical to create rapport and trust. Without rapport and trust, effective communication is impossible. Well-organized arrangements for appointments, reception and punctuality put patients at ease. Clinicians’ non-verbal messages, body language and unspoken attitudes have a huge impact on the emotional tone of the interview. Seating arrangements, eye contact, facial expression and tone of voice should all convey friendliness, interest and respect.

2. Opening the discussion

The aim is to obtain all the patients’ concerns, remembering that they usually have at least three (range 1–12). Ask ‘What would you like to discuss today?’ or ‘What problems have brought you to see me today?’

Listen attentively without interrupting. Ask ‘And is there something else?’ to screen for any other problems before exploring the history in detail.

Only when all concerns are identified can the agenda be prioritized, balancing the patients’ main concerns with the clinician’s medical priorities.

3. Gathering information

The components of a complete history are shown in Table 1.1.

Table 1.1 Components of a medical interview

4. Understanding the patient

Finding out the patient’s perspective is an essential step towards achieving common ground.

5. Sharing information

Tailoring information to what the patient wants to know and the level of detail they prefer helps them understand.

Patients generally want to know ‘is this problem serious and how will it affect me; what can be done about it; and what is causing it?’ Research shows patients cannot take in explanations about cause if they are still worrying about the first two concerns.

6. Reaching agreement on management

Understanding the situation is the first step but the clinician and patient also then need to agree on the best course for possible investigations and treatments.

7. Providing closure

A framework: the S–P–I–K–E–S strategy

Having a framework helps clinicians to present bad news in a factual, unhurried, balanced and empathic fashion whilst responding to each patient.

Follow-up

Bad news is a process and not a one-off. Patients may well not remember everything from the last visit and recapping is necessary. Always start by asking what they have understood so far. It is extremely distressing for patients to hear conflicting things from different clinicians. Keep colleagues informed and document accurately what was said to a patient and the patient’s wishes.

The move from active treatment to palliative care is a difficult stage in bad news. Patients want to know what happens next. They want to know ‘Will I be in pain?’; ‘Can I stay at home?’; and ‘How long do I have?’ Give clear answers with acknowledgement of any uncertainty. The priorities in patient care now are: relief of symptoms, quality of life and enabling the patient to settle family matters or unfinished business.

The clinician’s role is to mediate between the patient, other medical staff and the patient’s relatives whilst continuing to be an empathic and caring doctor.

Complaints

Much of the enormous increase in complaints and medical lawsuits is related to failures in communication. As with mishaps, clinicians tend not to deal effectively with dissatisfaction and complaints at the appropriate time, which is as soon as they happen. They may use avoiding strategies and become defensive. However, time spent when the complaint first arises can save minor inconveniences from becoming major traumas for all concerned.

The majority of complaints come from the exasperation of patients who:

Many complaints are resolved satisfactorily once these points are dealt with promptly and appropriately (Practical Box 1.4).

These interactions are very difficult for clinicians and patients and this is an area recommended for training to help all healthcare professionals. Clinicians should work in a professional culture that regards complaints as a valuable source of feedback, which deserves to be noted, collected and used to bring improvements to services.

Lawsuits

Lawsuits, the extreme form of complaint, are commonly rooted in poor communication or miscommunication, aggravated by a sense of grievance. Some 17% of patients affected by medical injury in the UK want financial compensation or disciplinary action. Any clinician faced with a lawsuit must seek specialist advice.

Beliefs

We all take our culture for granted but it can profoundly affect notions about symptoms, causes of illness and appropriate behaviour and treatment.

It influences when to seek medical assistance, what patients and doctors expect of the consultation and how they communicate. In some cultures, for example, it is very difficult for a woman to see a male doctor. Sometimes, family members may think it is their duty to talk for the patient whilst the doctor will expect to talk directly with the patient. Sensitive topics may be difficult to address but failure to do so could jeopardize care. It helps to apologize if offence is inadvertently caused and explain why such questions are required. Clinicians vary too. Those from traditional cultures may have a more paternalistic style than some patients want.

Language

Patients sometimes bring a family member or friend to interpret. This can be problematic because they may not have sufficient vocabulary and may be censoring sensitive matters or expressing their own views rather than the patient’s. Confidentiality cannot be guaranteed and patients may feel restricted in what they can say. Children should not be used to interpret, although they often still are.

When communicating through an advocate or interpreter, ask for the correct pronunciation of a patient’s name and whether there are any cultural differences in body language. Arrange the seating to see both the patient and advocate but always look and speak directly to the patient. Speak in short phrases, avoid jargon and find out the patient’s ideas, concerns and expectations. Watch for non-verbal communication and check the patient’s understanding.

Clinicians sometimes worry that interpreters are editing, when long exchanges are followed by only a short summary back to them. It helps to ask interpreters to translate exactly what has been said, e.g.:

Whilst examining the patient, ask the interpreter to stand outside the curtain. Always thank the interpreter at the end of the interview. If professional interpreters are not available, use telephone language lines or ask colleagues who speak the patient’s language. Advocates are people from the patient’s culture who can do more than translate. They can explain beliefs and concerns that are relevant in the patient’s culture and they help patients to understand the workings of the healthcare system.

Non-verbal communication

Awareness of cultural taboos, for example handshaking, eye contact, personal space and subjects that would be offensive to talk about, can help in maintaining dignity and respect.

Paraverbal communication varies across cultures. We infer things from tone of voice, stress on words and phrases, silence, pace, and politeness conventions used. Some cultures are more open, direct and assertive than others. Some languages do not differentiate gender in common nouns and pronouns, so ‘he’ and ‘she’ may be used interchangeably. It is hardly surprising that misunderstandings occur and it can be much harder to create rapport. It is worth remembering that smiling is a universal expression of kindness and warmth.

Patients may be more or less traditional, so check out assumptions.

Impaired hearing

Some 55% of people over 60 are deaf or hard of hearing. Patients may be accompanied by a signer but less than 1% of hearing-impaired people sign. Many hard of hearing people lip-read and some commonsense tips are listed in Practical Box 1.5. Clinicians who mumble, speak fast or have strong accents have a responsibility to make particular efforts to be understood.

Conversation aids are available which involve a microphone and amplifier. Specially adapted textphones, Minicoms, allow people to type messages which the operator relays to the person on the phone. Mobile textphones are also available.

Impaired vision

Patients who have visual impairment can miss non-verbal cues in communication. It may sound obvious, but it helps to make more conscious efforts to use the patient’s name so they know they are being spoken to. Clinicians should avoid sudden touch, explain what they are about to do and say what they are doing as they go along. Large print information sheets should be available for those with limited vision; audiotapes, Braille and Moon versions for blind people (http://www.rnib.org.uk).

Decision aids

Weighing up treatment benefits and risks where both may be substantial but not guaranteed is very hard for patients. Decision aids which are evidence-based, written in non-technical language and often including visual representations help people digest complex statistical information. They are reliable and from independent sources. Formats include web applications, DVDs, computer programs, leaflets and structured counseling. They are growing in number, with over 400 listed on the Cochrane register (see, e.g. http://www.ohri.ca/decisionaid).

Studies show they do not increase patients’ anxiety and their use results in 21–44% reduction in choice of invasive surgical options over more conservative treatments without adverse effects on health.