Withdrawal of life support: how decisions are made in the UK

Life-sustaining treatment replaces or supports ailing bodily functions. The NHS gives examples in its advance decision information: ventilation if you cannot breathe by yourself, cardiopulmonary resuscitation (CPR) if the heart stops, and antibiotics to fight infection. On an intensive care unit (ICU) the NHS describes equipment such as a ventilator, monitoring equipment, intravenous lines and pumps, feeding tubes, and drains and catheters, which are used to support bodily functions until a person recovers.

Withdrawal of life support is the decision to stop or not to continue such treatment because it is no longer considered to be of benefit or in the person's interests. It is a hard subject, and families often meet it at a time of shock. The NHS page on intensive care itself acknowledges that an ICU can be an overwhelming place for patients and their loved ones, and that some people may deteriorate there, so a decision to withdraw is sometimes part of the experience of intensive care.

This page covers the framework for decisions. It does not describe what happens at the bedside during withdrawal, because the NHS pages read for this guide do not cover that, and the ICU team caring for your relative is best placed to explain it.

The NHS explains that consent to treatment must be voluntary, informed and given by someone with capacity. If an adult has capacity to make a voluntary and informed decision to consent to or refuse a treatment, their decision must be respected, even if refusing treatment would result in their death. All adults are presumed to have capacity unless there is significant evidence to suggest otherwise.

Capacity means the ability to use and understand information to make a decision and communicate it. The NHS lists examples of impairment, including brain damage from a stroke or other brain injury and conditions that cause confusion, drowsiness or loss of consciousness. A person is thought unable to decide if they cannot understand the information, remember it, use it to make a decision or communicate the decision.

In intensive care, many patients are unconscious or sedated. The NHS ICU page says that if a person is unconscious or sedated, they may not be able to give consent, and if they have not nominated someone to decide for them or made an advance decision, the ICU staff treating them will usually decide what they feel is in the person's best interests, talking things over with the family whenever possible.

An advance decision (also called an advance decision to refuse treatment, ADRT or living will) is a decision made now to refuse a specific treatment in the future, which lets family, carers and health professionals know your wishes if you cannot communicate them. The NHS says it is legally binding if it complies with the Mental Capacity Act, is valid and applies to the situation. To refuse life-sustaining treatment it must be written down, signed by you and by a witness, and include a statement that it applies even if your life is at risk.

A lasting power of attorney (LPA) is different. The NHS says it lets you appoint someone you trust to make decisions for you, and a health and welfare LPA gives them the right to make decisions about your care and welfare. The NHS adds that someone with LPA can make decisions about your health on your behalf, although you can specify in advance certain treatments you would like them to refuse.

Where an advance decision exists, the NHS says you should make sure family, carers and professionals know about it and where to find it, because they may have to find it quickly if you need emergency treatment. It can also be kept in your medical records.

The NHS says that where there is no advance decision, a decision about continuing or stopping treatment needs to be made based on what the person's best interests are believed to be. To help reach the decision, healthcare professionals should discuss the issue with relatives and friends, and should consider what the person's quality of life will be if treatment is continued, how long the person may live if treatment is continued, and whether there is any chance of the person recovering.

The NHS capacity page adds that determining best interests includes considering whether it is safe to wait until the person can give consent, whether they might regain capacity, involving the person in the decision as much as possible, and trying to identify the issues the person would have taken into account, including religious or moral beliefs, based on views they expressed previously and insight from close relatives or friends. Where nobody suitable is available to help, an independent mental capacity advocate (IMCA) must be consulted.

Relatives are asked what the person would have wanted and what they valued, not to take the decision themselves. That distinction can be a relief to some families, and a source of distress to others, and it is reasonable to ask the team to explain it.

The NHS says treatment can be stopped if there is an agreement that continuing treatment is not in the person's best interests. The case will be referred to the courts before further action is taken if an agreement cannot be reached, or if a decision has to be made about stopping treatment for someone who has been in a state of impaired consciousness for a long time, usually at least 12 months.

The NHS capacity page notes that in situations of serious doubt or dispute about what is in an incapacitated person's best interests, healthcare professionals can refer the case to the Court of Protection, the body that oversees the Mental Capacity Act 2005. It lists withdrawal of nutrition and hydration from a person in a permanent vegetative state or minimally conscious state among situations that must always be referred to the courts.

If you have concerns about treatment that was given or not given, the NHS says you can make an official complaint, and it points to NHS England information on feedback and complaints.

The NHS draws a clear line. Stopping a person's life support is different from taking a deliberate action to make them die, and for example injecting a lethal medicine would be illegal. The NHS also states that deciding to refuse a treatment is not the same as asking someone to end your life or help you end your life, and that euthanasia and assisted suicide are illegal in the UK.

Understanding this line can help families who worry that agreeing to withdrawal means they have caused the death. The pages read for this guide describe it as a decision about whether treatment continues, made in the person's best interests, rather than an act to bring about death.

The NHS ICU page names two sources of information and support for relatives: ICU steps, a charity and support group for ICU patients and their loved ones, and the Intensive Care Society, a professional body that provides information about intensive care for patients and relatives. It also says the ICU staff will be on hand to answer questions during visits, and that touching, comforting and talking to the person is usually welcome even if they do not appear to respond.

The NHS describes grief as a natural response to loss that can include shock and numbness, overwhelming sadness, tiredness, anger and guilt, and says there is no right or wrong way to feel. It says feelings usually become less intense over time, suggests talking about feelings with a friend, family member, healthcare professional or counsellor, and says to see a GP if you have had a low mood for more than 2 weeks or are struggling to cope. People aged 18 and over can refer themselves directly to an NHS talking therapies service.

The NHS also describes prolonged grief disorder, where grief lasts many months or years, and says you are more likely to have it if the death was traumatic or sudden and unexpected. It advises seeing a GP if you have those symptoms.

Most intensive care in the UK is provided by NHS hospitals, and the same legal framework of capacity, consent and best interests applies in private hospitals. Whichever setting you are in, you can ask the consultant in charge for a meeting, ask for the reasoning to be explained, and ask whether a second opinion or a review by a palliative care or clinical ethics team is available. If you have a health and welfare LPA or know of an advance decision, tell the team at the earliest opportunity.