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Duty of candour?

Truth telling and rationing of resources
July 1997 revised September 2000

The scope of the medical obligation to tell patients the full truth about potentially available treatment options.

The right to know
Patients have clear rights to know information about their own medical condition and the options for treatment. Awareness of an obligation to provide patients with appropriate clinical information about their diagnosis and prognosis is well established but queries still arise about the scope and detail of that obligation. Health professionals are likely to feel most ambivalent about giving bad news or distressing information, especially where there is little that the patient can do to alter the situation. In particular, it is difficult for doctors to raise the fact that non-treatment may be the recommended course of action or the only feasible course. This guidance note focusses on the obligation to discuss with patients when treatment cannot be provided for reasons of scant resources. (See also BMA guidelines on DNR and on Withholding and Withdrawing Life-Prolonging Medical Treatment which discuss non-treatment based on clinical reasons.)

Assessments of how much detail to give patients should be based on an exploration of each patient's own needs and wishes. Most people want to be well informed but individuals differ in the degree of detail they want. People often need time to assimilate information and so must be aware that they can always request more detail at any time. There is no satisfactory set formula for what all patients need to be told and assessments must be made on an individual, case-by-case basis.
The candour which is now generally accepted practice in relation to medical information, does not appear automatically to extend to other categories of information which have a direct bearing on patient choice. A particular area of uncertainty which has been highlighted in correspondence to the BMA concerns the range of options that patients should be told about when there is little or no likelihood of some of those options being funded by the NHS. Anecdotal evidence bears out the view that doctors frequently base their judgements about discussion of possible options on their assessment of the patient's potential ability to purchase those treatments privately. Some doctors feel acutely embarrassed about having to tell patients that some treatments are only available in the private sector and some think it is wrong to do so if the cost is evidently beyond the patient's means. In such cases, they fear that the knowledge of potential options beyond their reach may only cause greater distress.

Insurers
Pressure on doctors to withhold information about options emerged initially in enquiries in 1996-7 from BMA members concerning their contracts with companies offering health insurance. Some companies issued instructions to specialists to inform patients only of those options which the company was prepared to fund. Specialists were told not to mention alternatives which might be available but were not on the list of procedures that insurers would fund for their clients. The BMA advised doctors to provide full information on the basis of their clinical judgement regarding interventions that might be beneficial for the particular patient but to make clear that some were not reimbursable from insurers. In some respects, however, the ethical position may be clearer with insurers in that even if patients cannot obtain the treatments they would prefer through insurance, they still need information about them since other funding sources, including the NHS are open to them. In cases where the NHS refuses to fund a procedure many patients will have no other alternative.

Health Authorities and rationing decisions
It is widely acknowledged that there has been a substantial lack of uniformity in the type of treatments funded within the NHS in different geographical regions and even within regions at different times of the financial year. This disparity is being addressed by various initiatives but until standardisation based on good evidence of cost effectiveness is achieved, grave problems exist for doctors and patients and strains are imposed on the doctor-patient relationship. An aim of this briefing is to produce practical advice on how doctors should respond to the current reality.

In order to help patients to understand better why a certain treatment will not be funded and to prevent high expectations, it is important to provide the highest degree of transparency possible concerning NHS’ decisions about rationing. Patients who are not well informed may expect to receive every possible, even unproved expensive treatment. Unrealistic expectations can damage the doctor-patient relationship. In cases where the treatment cannot be funded, patients should have access to information about the factors leading to the rationing decision.

Regarding this aim, the National Institute for Clinical Excellence (NICE) plays an important role. It was set up by the government on 1 April 1999 to address the existing inequalities in the provision of health care, create consistency in decision making and provide more transparency about NHS decisions. It produces clinical guidelines and conducts technology appraisals and clinical audits. It also sets clear national standards of what patients can expect to receive from the NHS. NICE is, however, only an advisory body. Doctors can deviate from its recommendations if there is a good reason in an individual case. The decisions of NICE are challengeable and the institute also asks patients for feedback in order to be able to keep its advice up to date.

Potential impact of the Human Rights Act
Questions may arise as to whether a refusal of a certain treatment on grounds of cost and assumed lack of effectiveness might be a breach of Article 2 of the Human Rights Act (Right to Life). As no such cases have yet been considered in the UK under this legislation, the answer remains a matter of speculation. Nevertheless, it seems unlikely that the courts would be willing to contradict rationing decisions of health authorities which are based on a reasoned judgement of evidence of effectiveness. Nor have the courts generally been willing to gainsay evidence-based, clinical judgements made by doctors in good faith. Article 2, however, may have effect in cases where the principle of proportionality is offended. (See also the BMA’s general guidelines on the Impact of the Human Rights Act on medical decision-making.)

When making rationing decisions, also Article 14 HRA (ban on discrimination) has to be born in mind. An example of a breach of Article 14 could be rationing which appears solely based on age rather than evidence of effectiveness and benefit for the individual. Age discrimination falls within the ambit of Article 14, even though it is not mentioned explicitly, because the list in Article 14 is not exhaustive (“or other status”). Clinical indicators demonstrating that older people in general benefit less from a certain treatment may not be accepted as a justification if such arguments are applied in a blanket way rather than treatment decisions being based on individual assessment. On the other hand, it is very unlikely that health authorities and individual doctors could be seen as obliged to provide futile, ineffective or unproven treatment. It is important, therefore, that attention is paid to the individual circumstances of each case and the requirements of the individual patient.

Current area of debate
In the past doctors argued that some information was potentially so distressing that it might demoralise the patient, affect quality of life or spoil the doctor-patient relationship. These arguments appear to have been transferred from the clinical to the financial aspect of treatment. Full truth-telling in the case of a terminal illness has always been a hotly debated moral issue, particularly where there is no treatment or course of action the patient can undertake to ameliorate the situation or postpone the inevitable. A major part of the rationale for providing information is to empower patients to exercise informed choices about the options open to them. Where such options exist but are not available, does the moral imperative to mention them remain? If it does remain, should it be considered an absolute requirement or a discretionary matter which doctors evaluate in the light of the doctor's (probably incomplete) information of each patient's financial resources as we well as that person's wishes? In the BMA’s view, part of the role of doctors is to ensure that decision making is returned as much as possible to the patient rather than pre-empting the choice by withholding potentially important information.

The issue becomes more complicated, however, when there is a lack of clinical agreement about the efficacy of some treatments. NICE is addressing such problems but its recommendations do not completely resolve disagreements about cost effectiveness. While their budgets are healthy, some purchasers are willing to pay for innovative and as yet unproven treatments for patients devoid of other options but these are the first categories of treatment and of patient to be dropped when finances become tight. Some authorities have tried to obtain the agreement of specialists, particularly oncologists, not to mention to patients certain options for which the purchaser considers there to be insufficient proof of long-term benefit or to be too costly or both.

The BMA supports the right of doctors to tell patients about the existence of options which the clinician believes to be potentially beneficial for the patient. The Association recognises, however, that providing such information can create additional stresses and dilemmas for vulnerable patients so that the manner and timing of the information should be carefully considered and may need to be supported by professional counselling.

This right to impart information also gains support from Article 10 of the Human Rights Act. Article 10 guarantees freedom of expression. It protects communication from any unjustified interference by a public authority, including NHS policy makers. As mentioned at the outset, in addition to health professionals’ rights and ethical duties to give relevant information to their patients, patients also have rights to know the information if it is available.

Nevertheless, doctors still have to make clinical decisions about which treatments are potentially beneficial to individual patients and which would be futile. In the BMA’s view, there is no ethical obligation to tell patients about treatments which would be clearly futile. All questions should be answered frankly, however, and wherever possible patients should be offered a second opinion if they require reassurance about the likely outcome of a particular option.

Although it might be argued that patients should be protected from the distress of receiving information about treatment options which are not publicly funded, this undermines the increasingly accepted concept of a partnership in decision making between patients and health professionals. It must be recognised that knowing a possible, even if unproven, treatment exists may make some families feel pressured to incur debts to buy it. On the other hand, however, patients and their families increasingly want to have the choice of making even difficult decisions of this type for themselves. They often seek out information from sources such as the internet and can lose trust in their medical advisers if they discover belatedly that information about potential options has been withheld.

Advice from the BMA's Medical Ethics Committee

• Doctors should be as open as possible with their patients on clinical matters, whilst remaining aware of the particular needs of individual patients. Recognising the importance of informed and independent clinical judgement, the BMA considers there is no obligation for doctors to inform patients about treatments which the clinician believes, on reasonable evidence, would be futile for them.
• Doctors should take their cue from patients as to the amount of information to impart about treatment options. Patients should have as much information as possible about why certain treatments are not available on the NHS (or through their insurer).
• The public should be helped to gain awareness, in general terms, of issues of funding and rationing in the NHS. Concern has sometimes been expressed that clinical evidence about efficacy of some procedures is not being widely disseminated. While this is something which is being addressed by NICE, the BMA supports wider debate on these issues.
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