The primary aim of medical treatment is to benefit the patient by restoring or maintaining health as far as possible, maximising benefit and minimising harm. If however, all suitable treatments fail, or cease to provide benefit to the patient, they may, ethically and legally, be withheld or withdrawn, and the focus of treatment changed to the relief of symptoms. In practice, the decision to withhold or withdraw life-sustaining treatment is of course, often very difficult.

Doctors, nurses and other clinicians who are delivering care to severely ill patients are required at all times to have regard to the best interests of the patient when considering what treatment is appropriate and indeed, whether to continue life sustaining treatment.

Where there is disagreement between those with parental responsibility and treating clinicians about a child’s treatment, including whether to continue life sustaining treatment, the court will be asked to determine what is in the child’s best interest. The views of the parents will be very important in the court reaching decisions, but it is the child’s best interests that are paramount, not the rights of those with parental responsibility.

The power to consent must be exercised according to the ‘welfare principle’: that the child’s ‘welfare’ or ‘best interests’ must be paramount. Even where a child lacks capacity to consent on their own behalf, it is good practice to involve the child as much as possible in the decision-making process.

If children have the capacity to give consent for themselves, consent should be sought directly from them. Once young people reach the age of 16, they are presumed in law to be competent to give consent for themselves for their own surgical, medical or dental treatment, and any associated procedures, such as investigations, anaesthesia or nursing care. Those under 16 are not automatically presumed to be legally competent to make decisions about their healthcare. Under-16s will be competent to give valid consent to a particular intervention if they have sufficient understanding and intelligence to enable him or her to understand fully what is proposed. If a child is not competent to give consent for themselves, consent should be sought from a person with parental responsibility.

As is the case where patients are giving consent for themselves, those giving consent on behalf of child patients, must have the capacity to consent to the intervention in question, be acting voluntarily and be appropriately informed. The power to consent must be exercised according to the ‘welfare principle’: that the child’s ‘welfare’ or ‘best interests’ must be paramount.

Duty of Clinicians, Secretary of State and Government powers

The duty of clinicians and the courts to treat the child’s best interests as paramount is consistent with the European Court of Human Rights and international conventions on the rights of the child. The Government does not intervene in individual cases, nor compel clinicians to act in ways that they consider to be unethical, unlawful and contrary to the patient’s best interests.

Guidance

National Institute of Clinical Excellence guidance (NG61), is especially helpful in covering the planning and management of end of life and palliative care in for infants, children and young people (aged 0–17 years) with life-limiting conditions. It aims to involve children, young people and their families in decisions about their care, and improve the support that is available to them throughout their lives. Link: https://www.nice.org.uk/guidance/NG61

The BMA is working with the Royal College of Physicians and the General Medical Council to issue updated and in-depth guidance on good clinical and professional practice for making decisions about clinically assisted nutrition and hydration. Interim guidance is at: https://www.bma.org.uk/advice/employment/ethics/mental-capacity/clinically-assisted-nutrition-and-hydration

Department of Health and Social Care