Living wills

Living wills

A living will is a document that sets out a patient's wishes regarding health care and how they want to be treated if they become seriously ill and unable to make or communicate their own choices. Living wills are also called active declarations.

Such a document may be helpful to relatives and to medical professionals in the case of a seriously ill and incapacitated patient.

Living wills are a part of planning what to do in the event of serious illness or disability. The phrase has been used as a handy media label to such an extent that many people focus on the document itself, rather than the actual process of advance care planning. It may well be that:

A living will is not an instrument of euthanasia, but a request in advance to doctors not to give certain medical treatments.

In fact, a living will need not block treatment, but could specify that doctors must continue treatment until the patient is dead, regardless of pain or suffering.

A philosophical problem

To make the use of a living will sensible we have to assume that the wishes of the person would be the same when they become incompetent as when they make the will.

There is some evidence that it is much harder to anticipate one's state of mind when dying (or when receiving significant medical treatment) than had been thought, and equally hard, if not impossible, to anticipate what one's state of mind (if any) will be when one is in a coma.

Some people take this further, and say that "an individual is as discontinuous from itself at a later time as it is from other individuals". If you accept this then it's not logical to accept the usefulness of a living will at all.

Advantages of living wills

• They respect the patient's human rights, and in particular their right to reject medical treatment
• Creating them encourages full discussion about end of life decisions
• Knowing what the patient want means that doctors are more likely to give appropriate treatment
• They help medical professionals in taking difficult decisions
• A patient's family and friends don't have to take the difficult decisions

Disadvantages of living wills

• Writing them may be very depressing
• It's difficult for a healthy person adequately to imagine what they would really want in the situations where a living will would take effect
• It may be hard to translate the words of the living will into actual medical action
• Patients may change their minds but not change their living wills
• They're no use if they can't be found quickly when needed

When to make one

People in good health find it hard to imagine the whole range of situations that might befall them, so it may be more effective for living wills to be compiled in the early stages of a disease or disability, as this will allow doctors to give realistic guidance about possible future situations.

Attitudes to living wills

A survey reported in the British Medical Journal in June 2000 found that although elderly inpatients were confused by the term "living will", most would welcome the chance to discuss issues about facing the end of life, and many would want to limit their health care if they were terminally ill.

Contents of a living will

Such a document would offer a set of particular medical scenarios (we've used an example prepared by the American Medical Association):

• Vegetative state
• Coma
• Brain damage and terminal
• Brain damage not terminal
• Chronic and incurable
• Serious but treatable

It would allow the patient to specify the goals of their medical care in each scenario from a list:

• Prolong Life; Treat Everything
• Attempt to Cure, but Reevaluate Often
• Limit to Less Invasive and less burdensome interventions
• Provide comfort care only
• Other (please specify)

It would also allow the patient to say what their wishes are in respect of specific medical interventions in the case of each of the scenarios above. They could say for each type of intervention:

• I want this treatment
• I want this treatment tried, but stopped if there is no clear improvement
• I don't want this treatment
• I am undecided about this treatment

The form of living will offered by the UK Voluntary Euthanasia Society also includes a set of medical scenarios and continues in a more general form than the American Version:

I DECLARE that if at any time the following circumstances exist, namely:

• I suffer from one or more of the conditions listed in the schedule; and
• I have become unable to participate effectively in decisions about my medical care; and
• two independent doctors (one a consultant) are of the opinion that I am unlikely to recover from illness or impairment involving severe distress or incapacity for rational existence,

THEN AND IN THOSE CIRCUMSTANCES my directions are as follows:

• that I am not to be subjected to any medical intervention or treatment aimed at prolonging or sustaining my life;
• that any distressing symptoms (including any caused by lack of food and fluid) are to be fully controlled by appropriate analgesic or other treatment, even though that treatment may shorten my life.

I consent to anything proposed to be done or omitted in compliance with the directions expressed above and I absolve my medical attendants from any civil liability arising out of such acts or omissions.

I wish it to be understood that I fear degeneration and indignity far more than I fear death. I ask my medical attendants and any person consulted by them to bear this statement in mind when considering what my intentions would be in any uncertain situation.

History

Living wills were first proposed in 1969 by the American lawyer Louis Kutner as a simple device to allow patients to say no to life-sustaining treatment that they did not want, even if they were too ill to communicate.

They dealt with the problem that doctors often found it hard to accept that patients might prefer death to treatment, especially when the patients could not speak for themselves.

Early attempts at using them revealed many problems in translating the wishes in the documents into specific actions for doctors to take about medical treatment.

Since then the documents have been greatly improved by the development of standards for the valid framing of topics and the elicitation and recording of opinions, wishes, and reasoning.

Medical Power of Attorney

An alternative to the living will is the Medical Power of Attorney which is available in some places.

This lets a person delegate to someone else the authority to make medical decisions on their behalf if they become unable to make or communicate such decisions. Unlike a living will, a MPOA allows the principal to have a wide array of health care decisions made by their agent, not just those directed towards death.

The MPOA only takes effect when a doctor has certified that the patient can no longer take or communicate their own decisions.

Before taking any decision, the chosen agent is expected to discuss things with the patient's doctors, and to take into account their knowledge of the patient’s wishes, including their religious and moral beliefs.

However a 1998 study produced some alarming results about the wisdom of appointing a medical proxy. The study, which used paired interviews, found that terminally-ill patients and their chosen surrogate health care decision-makers were in agreement on end-of-life choices in only 66% of the cases.

[D. Sulmasy et al., "The Accuracy of Substituted Judgments in Patients with Terminal Diagnoses," Annals of Internal Medicine, 4/15/98, pp. 621-629]

Further reading

Kutner L Due process of euthanasia: The living will, a proposal. Indiana Law J 1969;44