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What is a living will?

A living will is a means of indicating your wishes about what sort of medical treatment you wish to receive in the event that you become unconscious or otherwise unable to communicate your wishes. Living wills are often also known as Advance Directives. Living wills are often, but not necessarily, associated with medical treatment at the end of life. They are also usually thought of in connection with requests to cease or refuse medical treatment, but a living will is really about expressing one's wishes about medical treatment, whatever they may be.

A living will is about medical treatment only. You cannot use it to say what is to happen to your property after your death, or to make funeral requests. To dispose of property you need to make an ordinary will (see above).

How to make a living will

There is no set legal format for a living will. Various organisations have produced their own forms for people to fill in, and some solicitors draw them up individually. Organisations producing forms include the Voluntary Euthanasia Society, the Patients Association, and the Terrence Higgins Trust (THT). The THT form was produced jointly with Kings College Centre of Medical Law and Ethics and is available free of charge from THT and other HIV organisations and care centres. It was produced in close collaboration with people with HIV, and specialist medical professionals, and is designed for people to fill in themselves without a lawyer.

You can use a living will to do either or both of the following:

  • You can state in advance your wishes regarding medical treatment. These statements are called advance directives.
  • You can appoint someone, called a health care proxy, to take part on your behalf in decisions about medical treatment.

The living will produced by THT sets out three possible scenarios:

  • Physical illness from which there is no likelihood of recovery. In this case you can say what your wishes are if you develop an infection or other illness which cannot be cured and which has become so serious that your life is nearly at an end because of it.
  • Permanent mental impairment in which an individual is suffering from an irreversible impairment to his/her mental functions which is so severe that the individual does not understand what is happening to him/her, and develops a physical illness from which there is no likelihood of recovery.
  • Permanent unconsciousness from which there is no likelihood of regaining consciousness.

In each case, the document gives you the option of stating that you would wish to be kept alive by medical treatment, or of refusing treatment other than to keep you comfortable and free from pain.

It also gives you the opportunity to state your wishes about particular medical treatments or investigations about which you may have a preference. For instance, you may not wish to have certain sorts of painful tests, or to receive certain sorts of drugs. You might also have views about ventilation (artificial breathing), or the administration of food by tube.

It is best to discuss your wishes with your doctor partly to ensure that you have understood the options, and expressed your wishes in a way which makes medical sense, and partly so that if the time comes to put the Living Will into effect, there is evidence from your doctor on the points which have to be proved in order for it to be legally binding (see below)

Bear in mind that you can change or cancel a Living Will so long as you are fit to do so. What you decide now is not set in stone, and if your circumstances change you may wish to make a new Living Will, expressing slightly different views.

You can also use your living will to appoint someone, such as a partner, friend or family member, to take part in medical decisions on your behalf if you become unable to do so yourself. This person is known as your Health Care Proxy. You should discuss your intentions with the person you have in mind. You need to make sure that he or she is prepared to take on this role, knows your wishes about medical treatment, and is prepared to express them on your behalf. The role of the next of kin has some similarities, but the emphasis is on the administrative function of being someone for the hospital to contact in an emergency, rather than someone with whom issues might be discussed. Next of kin has no clear legal definition in this context, and you can name anybody. It is probably less confusing for the hospital if the same person is named as next of kin on your hospital notes and as health care proxy in your living will. You should also be aware that the law is unclear when it comes to disputes after a death. If there is any risk of arguments about who should arrange a funeral, it is worth remembering that the law gives this responsibility to the executor of a will, if there is one, but that hospitals will normally release a body to whoever they consider to be the next of kin.

As the law stands (see below) nobody at all, including your proxy has the right to express legally binding wishes about medical treatment on your behalf. If you are incapable of expressing a view, and have not made a valid advance directive, doctors are entitled to treat you in accordance with their assessment of your best interests. However, doctors often value knowing who it is that you have chosen to participate in decisions about your care, especially in a situation where there seem to be a number of people all claiming to know you best and all expressing different opinions.

Make sure that those close to you (especially your Health Care Proxy) know that you have made a Living Will and where to find it.

If you have to go into hospital, make sure your doctor there knows you have a Living Will and that a copy is in your medical notes. Ideally you should also discuss your wishes with a member of the medical team, both when you make the living will, and on admission to hospital.

What is the legal status of a living will?

Advance refusals of treatment

Most people who make a living will do so in order to refuse medical treatment. In principle, an adult of sound mind may refuse medical treatment.

An advance refusal of medical treatment will be legally binding if it is clearly established and applicable to the circumstances. Three conditions must be fulfilled:

  • The maker must have had mental capacity (this in itself involves another complicated assessment, but in everyday terms implies that the person understood in broad terms the nature and effect of what they were doing, and possessed the ability to understand the available options and to make a choice).
  • The maker must have been subject to no undue influence at the time of expressing the refusal
  • The maker must have had in his or her contemplation the circumstances which have arisen. This means that they must have considered the likely future scenario, so that for example a refusal of treatment when facing a terminal illness would not necessarily apply after a road accident (re T (Adult: Refusal of Treatment) [1993] Fam 95).

The statement need not be in writing, but evidentially a clearly written, signed and witnessed document will be much easier to establish.

Artificial nutrition and hydration constitute medical treatment and may therefore be the subject of a valid advance directive (Airedale NHS Trust v Bland [1993] AC 789). It is likely that for public policy reasons a refusal of basic care (not defined but including warmth, comfort and hygiene – and arguably spoon feeding) will not be binding. Re C (Adult: Refusal of Medical Treatment) [1994] 1 WLR 290 confirmed that an individual may seek an injunction to enforce a refusal of treatment, and highlighted that a mental patient may have sufficient capacity to have his or her wishes concerning physical treatment respected.

Limitations

An Advance Directive cannot override statutory authority where this exists, for example provisions for compulsory treatment in the Public Health Act 1984 and the Mental Health Act 1983. A person who is lawfully detained under the provisions of the Mental Health Act may be treated for mental disorder regardless of their consent. A person with a disorder such as Anorexia Nervosa may be detained and receive treatment (including forcible feeding since in this instance the lack of eating is considered to be part of the mental condition).

There is also controversy the extent to which a pregnant woman may refuse medical treatment (notably a caesarian section) where medical opinion considers that the foetus's life may be at risk. It seems following a decision by the Court of Appeal on 26 March 1996 that a pregnant woman may continue to refuse treatment, even if that could risk the life of the foetus, so long as she has full mental capacity. However, capacity is likely to be strictly tested.

What is lawful is the refusal of medical treatment: a living will cannot be used to require treatment aimed solely at hastening death since that would amount to euthanasia which is illegal in the UK.

According to present law the refusal of medical treatment by children and young people under the age of eighteen is not legally binding, even though the consent to treatment of a young person of sufficient understanding is binding (Re R: (Minor, Refusal of Treatment) [1991] 3 WLR 592). A young person with a life threatening condition does not therefore have an absolute right to refuse medical treatment in the face of parental or medical opposition.

Advance requests for medical treatment

There is no right to insist on any particular treatment from the NHS, and the Courts have repeatedly stated that they will not interfere in questions of resource allocation or clinical judgement ( R v Cambridge District Health Authority, ex p B (1995) 2 All ER 129)

Treatment from a private doctor is a matter of contract, but the doctor will be bound by professional ethics.

Health care proxies

Such an appointment is not at present legally binding, so it is up to the individual doctor how much weight to place on the views expressed by the proxy. This is in contrast with an attorney under a power of attorney, whose powers are legally binding, but only apply to dealing with property and financial affairs.

Further information

Advance statements about medical treatment, code of practice, British Medical Association, 1995.

Practical guidance to doctors on dealing with living wills

Mental Incapacity: Law Commission Report, 1995.

A major review of the law relating to incapacity and decision making. Proposals for reform include a statutory basis for advance directives and provision for health care proxies to be appointed along similar lines to the Enduring Power of Attorney.