Decision time

WHEN you think of getting consent, what immediately springs to mind? For some it is all about finding time to get a patient’s signature on a form as part of the bureaucracy before a procedure. For others, both doctors and patients, it is a legalistic process to prevent the prospect of a patient bringing charges of assault. But is that the start and end of it?

Doctors often talk about ‘consenting’ patients and, whilst this may be convenient shorthand, it misrepresents consent as something done by a doctor to a patient. Our revised guidance, Consent: patients and doctors making decisions together, came into force on 2 June 2008. It starts from the premise that consent is the culmination of a good decisionmaking process that involves wider discussions between doctors and patients. This will often involve other members of the healthcare team and the patient’s relatives and carers.

A shift to patient-centred care

The new guidance reflects a shift in professional and public attitudes towards more patient-centred care, as well as containing practical advice on sharing information and discussing treatment options. It will have an impact on all patients, but in particular on those who may need extra support to make decisions about their care.

The updated guidance aims to provide a framework that can be used in a variety of circumstances in which patients make decisions about treatment. It includes new advice for doctors on:

• Partnerships with patients – listening and sharing information
• How to communicate the risks and possible sideeffects of treatment to patients
• What to do when patients refuse information
• Changes in the law, including the new legal safeguards for patients who lack capacity to make their own decisions.

In developing the new guidance we engaged and consulted widely to find out the key issues doctors, patients, carers and others thought the guidance should address.

As part of the consultation process we ran a series of workshops across the UK in partnership with Theatreworks, part of the National Theatre, and charities for older people and people living with dementia. This included the Scottish Dementia Working Group.

The workshops were an innovative way for us to gather views from those who have direct experience of the issues, but who would not usually respond to a formal consultation. They allowed us to explore, with an audience of doctors, people with dementia and their carers, some of the difficulties that arise when a patient’s ability to make decisions is impaired or fluctuates because of a condition such as dementia. The workshops incorporated a play which followed Will, who has early stage dementia, and his wife and carer, Helen, through a series of unsatisfactory encounters with doctors, both in primary and secondary care. The audience were asked to explore the issues and to take the place of the actors to show what they would do differently in order to get a better outcome. The information we received through this process helped to shape the principles of good practice in the guidance.

Partnerships with patients

Good decision-making should be based on a partnership between doctors and patients and will often involve the wider healthcare team. The guidance stresses the importance of doctors listening to patients and respecting their decisions, and requires them to provide information that patients need to know in order to make a decision – and any further details that they ask for, directly or indirectly. The phrase we use is ‘the information patients want or need in order to make a decision’.

Talking about risk

For the first time, we have included advice for doctors on how to approach discussions with patients about potential side-effects, complications and other risks of treatment. This also includes discussing the potential outcome of taking no action. Risks can vary in both severity and frequency, and in their impact on patients. The guidance asks doctors to consider the risk and its significance for the patient. Doctors should take into account a patient’s diagnosis, prognosis, history and personal circumstances, and the guidance offers suggestions on how to tailor the discussion to the individual patient’s situation.

It is important that information about risk is given to patients in a way that can be understood. Doctors should check that the patient understands the terms they use when describing the seriousness of a particular adverse outcome, or the likelihood of it occurring in a particular situation. They should also present risk in a balanced way, avoiding bias and explaining the benefits as well as the risks and burdens of treatment options.

Patients who refuse information

The new guidance also contains advice on what to do if patients do not want detailed information about a condition or proposed treatment, or ask the doctor or someone else to make the decision. While it stresses that doctors must respect patients’ wishes and should not force information on them, it also outlines the minimum information that a patient is likely to need to give valid consent.

In particular, the guidance emphasises that doctors should try to find out why the patient does not want the information. Sensitive exploration of patients’ views and concerns can often overcome their initial resistance to being given information about their condition or treatment options.

Where patients insist that they do not want to be told about their condition or treatment, doctors should explain why it is important that they are given information, at least, about what the treatment will involve and what it should achieve, the level of pain or other side-effects that are likely to arise, how they should prepare for the procedure and any serious risks. Without having this information, patients’ consent may not be valid.

Changes in the law

Part Three of the guidance deals with decisionmaking when patients lack capacity or their capacity is impaired, taking account of the introduction of the Mental Capacity Act 2005 (England and Wales) and the more established Adults with Incapacity (Scotland) Act 2000.

The guidance in this section is consistent with the law across the UK, but it is still important that doctors keep up to date and comply with the laws and codes of practice that apply where they work. Doctors should consult their defence body or professional association, or seek independent legal advice, if they are unsure about how the law applies in a particular situation. There have also been some significant developments in common law, relating to the importance of providing information about risks, and these changes have also been reflected in the guidance.

We hope that the new guidance will encourage doctors to work in partnership with patients to make decisions about treatment and care. Our guidance is not exhaustive, but sets out high-level principles of good practice. Doctors must use their judgement in applying the guidance to the situations they face in practice. The information provided to patients to allow effective decision-making should be proportionate to the patient’s condition, the complexity of treatment, seriousness of risk, sideeffects and complications.

No one size fits all, and doctors need to be responsive to the needs of patients. Doctors should adapt to ensure that patients are given every opportunity to make fully informed decisions.

Consent: patients and doctors making decisions together can be downloaded from the GMC website at www.gmc-uk.org

Jane O’Brien is head of standards and ethics at the General Medical Council