Fiona Haas, RGN, is a respiratory nurse at the Respiratory Centre, St Richard’s Hospital, Chichester
Since the 1960s medical technology has made it possible to keep very ill people alive for longer periods. Towards the end of life people frequently become so ill they are unable to make decisions for themselves, or become unable to communicate them. A living will is one way people can try to ensure they will be treated in the way they want. It can help make certain they are not kept alive for a long time by medical means if this is their wish.
The RCN (1994) states that a living will gives patients comfort not least because they feel they are able to continue to have control and autonomy in their lives, even when they can no longer exercise that autonomy directly.
Definition of an advance statement
An advance statement is an expression of a person’s wishes about medical care, to be used to guide doctors should circumstances arise when that person is unable to make or communicate decisions. It is also called a living will, advance directive or advance refusal. The British Medical Association’s Code of Practice Advance Statements About Medical Treatment (1995) provides a comprehensive definition.
A living will or advance statement can simply be a statement of values. Some living wills make a declaration about the conditions under which a person would not want to be kept alive by medical treatment.
Recommended information for living wills includes:
- Name, address and date of birth of person making the living will;
- Any distinctive physical marks;
- Name and address of GP - state if she/he has a copy;
- Where the living will is stored;
- List of people with a copy, and their contact details;
- Date of writing and date of reviewing;
- Signatures of two witnesses;
- Statement of independence of witnesses and relationship to maker of living will.
The living will should also do the following:
- State that it should take effect if the maker becomes incapable of making decisions;
- Specify any treatment to be refused;
- State the circumstances in which it should apply;
- If wished, state that a decision to refuse treatment should apply even if the treatment is necessary to sustain life (House of Commons 2004).
The difference between living wills, euthanasia and assisted suicide
Advance directives allow patients to take some control over decisions on treatment at the end of life, which may involve refusing life-prolonging treatment. These directives are sometimes confused with euthanasia and assisted suicide. Euthanasia and assisted suicide are both illegal under present laws. A living will does not permit any illegal actions. It is not concerned with taking measures to end a patient’s life. It is about patient choice and safeguarding a person’s wishes.
If an advance directive is made under the conditions that make it valid, it is respected in law and must be treated as seriously as a refusal made at the time treatment is offered. For several years the government has recognised the right of a person to make an advance refusal of treatment (Box 1). Law in the UK is decided either by statute by parliament or by case law. Cases such as Airedale NHS Trust v Bland in 1993 have established the legal status of living wills (BMA, 1999).
The draft Mental Capacity Bill (Department for Constitutional Affairs, 2004), which has had its third reading in the House of Commons, should formalise the legal status of advance decisions. There have been three significant amendments to the original bill as a result of pressure from interest groups. The first is that if life-sustaining treatment is to be refused this must be stated clearly in the advance decision (section 8.11 of the draft Code of Practice, section 25 (5) of the act).
The second amendment requires that the treatment to be refused must be specified (section 8.26 of the draft Code of Practice, section 25 (4) of the act). Until now it was not necessary to specify treatments. Organisations including Age Concern, The Patients Association and the BMA have worked to provide guidance on living wills and none thought it necessary for treatments to be specified.
Many people may be clear that they do not want medical treatments to keep them alive in certain circumstances, but they may not know which treatments could be offered. Even nurses and doctors could have difficulty listing all possible treatments that might be used to prolong life.
However, the requirement to specify a treatment may be qualified by the following clause: ‘A decision may be regarded as specifying a treatment or circumstances even though it is expressed in broad terms or unscientific language’ (Department of Constitutional Affairs, 2004).
The third amendment requires a living will to be in writing and be witnessed (House of Commons, 2004). In practice if the conditions that make a living will valid are met then it will be accepted and is binding.
There are certain conditions that must be met if an advance directive is to be considered valid:
- The patient must be 18 or over and have the mental capacity to accept or refuse treatment;
- No outside pressure should be put on the patient to make a decision (Box 2);
- The patient should understand the nature and consequences of the directive.
If these conditions have not been met then the directive can be overruled.
An advance statement only comes into force when a patient is unable to make decisions. As long as a patient is able to communicate she or he should talk directly to health care staff and tell them their feelings about medical interventions. The document should not act as a barrier affecting the relationship between the patient and the nurses and doctors (Box 3).
Form of advance directive
An advance directive does not have to conform to any particular form. The importance is the expression of the patient’s wishes. The Law Society and the BMA advise that patients’ wishes should not be ignored because they have not been recorded in a standard way (The Lord Chancellor’s Department, 1998).
Casual remarks about health care should not be used as the basis of an advance directive (BMA, 1995). Witnessed verbal instructions should be respected but there is a possibility that an expression of a refusal of treatment would be ignored unless the patient spoke to a senior member of staff.
The views of relatives
In the UK the opinion of family members may be taken into account but, at present, they have no legal rights to decide treatment (BMA, 1995). In the first instance relatives should be asked to help to indicate what patients might have wanted for themselves. The wishes of the relatives may be explored but their wishes should not be allowed to overrule any known requests of the patient.
In the UK doctors are obliged to act in a way to further their perception of the patient’s best interests.
Next of kin and health care proxy
If a patient is unconscious the person who is the legal next of kin would normally be the first person to be consulted or given any information about the condition of the patient. If a patient wants to nominate another person, a proxy decision-maker, to advise on decisions related to care, this should be discussed with the person before she or he is appointed. At present the views of a relative or proxy decision-maker do not have legal force in England and Wales.
The Mental Capacity Bill will introduce a new power of attorney - a lasting power of attorney (LPA). A person will be able to delegate health care and decisions concerning consent to medical treatment to others. The person who has the authority will only be able to make decisions about life-sustaining treatment if this is clear in the document describing the LPA (Department of Constitutional Affairs, 2004).
A patient may nominate any person to be given information or take part in decisions on medical care. This person does not have to be the legal next of kin or a blood relative. It is therefore important that a patient is asked who the first contact should be.
Patient confidentiality may not be breached without permission and it is the patient’s right to determine to whom information should be given. It is binding if an advance statement nominates a person to be consulted who is not the legal next of kin.
Normally the next of kin would be contacted if an unconscious person were admitted. Those with a close relationship with someone who is not their next of kin, for example same-sex partners, may be concerned that the person closest to them could be excluded by the family.
An appropriate advance statement or living will ensures that the partner or nearest friend is not excluded as long as the patient is alive. These rights of the person closest to the patient only last until the patient dies. After this the next of kin is expected to sign the patient’s death certificate and arrange the funeral.
Involvement of others in the document
It is not essential for a patient to draw up an advance directive with a doctor to make it legal. Many people use a pre-prepared form such as those prepared by the Terence Higgins Trust or the Voluntary Euthanasia Society.
It can be helpful to talk to a doctor as, if the meaning is ambiguous, the doctor can then clarify the patient’s wishes. Knowing that there has been discussion with a doctor will improve the chances of it being followed. Good practice suggests that a health care professional should be consulted when drawing up an advance refusal of treatment (Dyer, 2004).
It is not essential to use a lawyer to draw up an advance directive. The right of a patient to refuse a medical intervention in advance is legal. Some people wish to lodge their advance directives with their lawyers. This is particularly advisable if there is conflict within the family about the patient’s wishes.
In an emergency there may be uncertainty of a patient’s identity or it may not be clear if the advance statement is valid - or if it applies in the circumstances. If this is the case, treatment should be carried out to stabilise the patient’s condition until it is certain that the advance refusal of treatment should be invoked. As soon as it is established that the patient is the person who has made the advance refusal of treatment then, if the conditions are those set out in the advance directive, the treatment that has been refused should be withdrawn (BMA, 1995).
Implications for practice
A nurse has no more right than a doctor to ignore a patient’s contemporaneous or advance refusal of consent. If a nurse carries out a treatment known to be against the patient’s wishes, the nurse could be guilty of assault or battery. Article 3.2 of the Code of Professional Conduct states that: ‘You must respect patients’ and clients’ autonomy - their right to decide whether or not to undergo any health care intervention - even where a refusal may result in death or harm to themselves or a foetus, unless a court orders to the contrary’ (NMC, 2002).
Capacity should be assumed unless there is a good reason to doubt it (BMA, 1995).
Patients do not have to give reasons for refusals of treatment and they have the right to make unconventional or imprudent decisions (Department for Constitutional Affairs, 2004).
With minors the situation is not completely clear. Generally those with parental responsibility for a young child can give or withhold consent. However, this can be overridden if there is conflict about the child’s best interests.
The views of a young person (those under the age of 18 in England and Wales) should be taken into account but will not always take precedence over parents or a court. For further details on this issue see the document Withdrawing and Withholding Life-Prolonging Medical Treatments (BMA, 1999).
Pregnancy complicates decisions on advance refusals of treatment. When considering treatment for a pregnant woman the best interests of the woman, not the foetus, are to be taken into account (BMA, 1999).
A pregnant woman has an absolute right to refuse treatment (Gilberthorpe, 1998) as being pregnant cannot take away a woman’s right to make decisions concerning her body. However, as there is a chance that a woman who becomes pregnant may want to stay alive until her baby is born, such cases are likely to involve the courts. Some living will forms take this situation into account (Law Pack, 2001).
An advance refusal of basic care has no force. Basic care includes the offer of washing, the offer of food and drink by mouth, and pain relief. This can be refused by patients at the time it is offered (as often happens) but an advance refusal can be ignored. Basic care does not include any form of nutrition or hydration by tube as this is deemed to be medical care.
Artificial nutrition or hydration can be refused in an advance refusal. This means that a person can state that if she/he were to become unconscious and unlikely to recover, she/he would not want to receive artificial hydration or nutrition. This would be binding providing all the conditions were met. The patient should not be fed by tube or drip, but, if appropriate, could receive offers of food and drink by mouth (Box 4).
Reasonable basic care should always be offered. The BMA (1995) states that: ‘Our view, that individuals cannot validly refuse basic care, does not necessarily imply that health care professionals are obliged to provide every facet of basic care. They should, rather, provide that which is reasonable in the circumstances.’
Advantages and disadvantages
One disadvantage of living wills is that a patient might not be able to benefit from new medical treatments.
People also worry that patients may have changed their minds by the time they are unable to make their own decisions. However, evidence suggests the majority of patients who have decided to refuse life-sustaining treatments maintain these choices (Danis et al, 1994). Most people have deliberated for a long time before preparing an advance refusal of treatment.
The Alzheimer’s Society (2002) supports the use of living wills to enable those with dementia to have a say in their future care.
A major advantage of living wills is that they can promote discussion. Doctors know that patients have considered end-of-life decisions if they have made advance statements. This gives permission for discussion. The message is that difficult subjects can be broached.
An additional benefit, secondary to the prime purpose of a living will, is that patients can make known which people they would like to be informed of their condition and who should be involved in any decisions if they become unable to express their own wishes. This is particularly important when the person chosen is not the nearest blood relative or next of kin.
A living will can be very helpful to doctors when making difficult decisions. Information on the patient’s probable wishes is useful. It regularly occurs that relatives know that the patient would not want major or ‘heroic’ efforts to save her or his life. At a time when relatives are very distressed it can be a dreadful additional burden for them to have to make a decision on how much invasive treatment should be undertaken.
Even if the patient’s death is inevitable, if the relatives are asked to agree to some treatments being omitted it could feel as though they are pronouncing a death sentence. Living wills have been likened to a ‘gift to the family’ lessening some of the anguish (Fletcher, 1994).
The draft mental capacity bill requires that there must be a clear statement if life-sustaining treatment is to be refused. However, the bill is currently still in its draft stages and change effecting living wills may still occur before the document is finalised.
Advance statements are legal. They are complex, but providing certain conditions are met, they are now legally binding. If the circumstances detailed in the advance statement come about and the patient is unable to make her or his own decisions, any advance refusals of medical treatment will be enforceable.
Nurses can give basic care, including washing, pain relief and offering food and drink by mouth if this is possible. Neither nurses nor doctors have any legal right to impose a medical intervention on a patient who has made a valid refusal.
Nurses should be aware of the legalities of living wills and the fact that they have no more right than a doctor to ignore a patient’s refusal of treatment.
An advance directive can give patients a feeling of control about what may happen to them medically at the end of life, and in some instances can ease the burden of decisions for the family.
Organisations that can provide living wills
The Terence Higgins Trust
Living Wills c/o Jean Foreman, Terence Higgins Trust, 52-54 Grays Inn Road, London WC1X 8JU. Free copies of the living will are given to people living with HIV. For others, a donation is required.
Voluntary Euthanasia Society - 13 Prince of Wales Terrace, London W8 5PG. £15 for living will pack containing living will forms, advice on how to fill them in and a medical emergency card. www.ves.org.uk
Lawpack Publishing - 10-16 Cole Street, London SE1 4YH. £4.99 for four forms and minimal notes. Available at www.lawpack.co.uk or in bookstores.
The Patients Association - 8 Guildford Street, London WC1N 1DT. Living will is free to members, otherwise there is a suggested donation of £5.
Alzheimer’s Society - Gordon House, 10 Greencoat Place, London SW1P 1PH. www.alzheimers.org.uk