Labour to get living wills?  

a review by Chris Docker

In a surprise move by the new Labour Government,  a Green Paper on Mental Incapacity was issued in December 1997 which includes the thorny subject of living wills, again raising the prospect of legislation on this difficult issue.

Where did the Paper come from?

The Green Paper, an official Consultation Document, was born from the efforts of the Law Commission, whose 1995 Report was seen as one of the most insightful and lucid examinations of living wills anywhere. The Conservative Government of the day conveniently ignored it, and it was left to gather dust for two years.

1993 to 1995 heralded a time of intense activity and investigation for the living wills question and I remember the sincerity and skill with which it was pursued by the very many people I spoke to in that period - the Law Commission, the British Medical Association, the Law Society, the Department of Health, the Terrence Higgins Trust, and numerous smaller organizations, academics, individuals, and local, national and international groups that were desperately trying to find a way through the maze. I had compiled Collected Living Wills, the first international collection of such documents, and embarked on a period of investigation that culminated, on my part, in the multidisciplinary analysis in Contemporary Issues in Law, Medicine and Ethics followed by the setting up of the Living Will and Values History Project (from which VESS’s current main document derives); and, on the part of the BMA, in Advance Statements about Medical Treatment - a concise handbook for health care professionals which was remarkable for its clarity and practical helpfulness.

Taking the lead internationally

The U.K., unexpectedly, was streaking ahead in its thinking on living wills. Experiments in other countries were proving less successful than anticipated. In the U.S., the Patient Self-Determination Act had spawned legislation in every state of America, yet problems abounded. Legislation was (and is) routinely ignored, and living wills misinterpreted, or simply engendering extensive (and largely unproductive) court actions. In Scandinavia, the setting up of a national living wills register proved equally disappointing, since most doctors failed to consult it when the circumstances called for them to do so. Eventually, several pockets of researchers in the U.S. took a different approach, introducing Values Histories in an attempt to get back to basics. Problems in the U.S. and many similar jurisdictions stemmed from an overconfidence in the law in a rather gray area. Britain, on the other hand, recognized that it was a gray area, and that statutory law could do very little that the common law couldn’t.

The legal dilemma

A basic problem with living wills is the need to successfully anticipate the medical situation that will arise. If that is done, then the common law is binding: if it is not done, then no amount of legislation can enforce a document in a situation which hasn’t been anticipated. Attempts to get round this problem include:

Many commentators have even asked if the law is always an appropriate tool to use to protect patient autonomy in the situations which living wills seek to address. Even if you are right, by the time you sue the hospital for breaching your living will, the damage / unwanted treatment will probably have been done and can’t be undone. The effective weapons seem to be close communication between the patient and the doctors, and someone to stand in your corner and make a fuss if you become incapacitated. If your living will serves as a springboard to achieve both of these you may be in with a good chance of having your wishes respected, and legal ramifications are all power to your elbow; but if it doesn’t, then it will very likely just be ignored.

So what’s the government up to?

Lord Irvine, the Lord Chancellor, whilst denying that his proposals represent any official approval, has introduced the Consultation Paper (called Who Decides?) in the Lords. Geoff Hoon MP, Parliamentary Secretary at the Lord Chancellor’s Department, made a similar statement in the House of Commons. The paper could well form the basis of legislation.

In a statement to the House of Lords, the Lord Chancellor said: “As it currently stands, the law affords little protection either to mentally incapacitated adults, or to those who care for them. The law is confusing and fragmented. Many carers in particular are expected to make decisions on behalf of incapacitated adults without a clear idea as to the legal authority for those decisions. Everybody will know of a friend or relative whose lives are affected by the unsatisfactory nature of the current law.”

The benefits of introducing legislation then are not that of new law, but of clarifying, cohering and codifying existing law. The introduction of statute will be a major publicity exercise, acquainting health care professionals and the public with the ideas and responsibilities associated with living wills. The BMA’s book, for all its excellence in content, failed notably in this respect - very few copies were sold, proportionate to the number of practicing doctors, and most health care professionals are still ignorant of such a code of practice as well as the requirements of the law as it stands. But the Law Commission’s (and hence the Green Paper’s) proposals go slightly further. They give legal force to an appointed representative (a proxy or “Continuing Power of Attorney”). On this issue the Living Will and Values History Project tentatively parts company with the current proposals, simply on the basis of the mass of evidence that suggests decisions made by proxies are frequently no better than guesswork or chance (this fact is strenuously denied by patients and proxies alike, who frequently have complete, though unfounded, confidence in the ability of the proxy to articulate the wishes of the patient). The Green Paper’s proposals go beyond asking the proxy to make a fuss and bring the living will to the attention of everyone concerned: they allow the proxy to actually make decisions on behalf of the patient.

The first set of issues examined in Who Decides are the key principles which underpin the Law Commission’s recommendations: the need to replace the variety of different tests of capacity with a single, straightforward statutory definition; and decisions on behalf of people under an incapacity being made in their best interests. The Green Paper seeks views on a number of recommendations made by the Law Commission, one of which is living wills - although the term - “advance statement” is used by the Law Commission and in the Green Paper. “There is a misconception,” the Lord Chancellor told the House of Lords, “that the Law Commission’s proposals would make legal provision for advance statements for the first time. This is not the case. Valid advance refusals already have full effect at common law. An advance statement enables people to leave instructions about their medical treatment in anticipation of a time when they are no longer capable of making decisions or communicating them. Advance statements cannot force a doctor to give a particular type of treatment. Nor can they ask a doctor to do anything which is illegal. An advance statement could not, for example, ask a doctor deliberately to end life. The blunt truth is that if a doctor took such action he would be exposed to a charge of murder.”

What a living will does, for instance, is to allow a patient with an illness who knows that they may at some future time lose capacity to consent to treatment, or to communicate that consent, to provide that consent in advance, or equally to refuse it. Who Decides includes a number of other Law Commission recommendations on which the Government is seeking responses, including: establishment of a legal framework to govern the many informal day-to-day decisions that are made by carers, family members or treatment providers on behalf of those under an incapacity; additional independent supervision for some types of serious medical procedures, including sterilization and donation of tissue or bone marrow, to ensure that the best interests of the incapacitated are properly protected; criteria governing decisions relating to the withdrawal of artificial nutrition and hydration from a patient in a persistent vegetative state; criteria governing decisions in the area of medical procedures and research for the benefit of others; the existing legal framework for enduring powers of attorney to include the concept of a “continuing power of attorney” which would enable a person with capacity to appoint somebody to make decisions on their behalf if that capacity was ever lost; a new duty for social services authorities to investigate cases of possible neglect or abuse with short-term powers to protect people in these cases; and new court jurisdiction which could deal with personal welfare and health care issues as well as property and financial matters (which are currently dealt with by the Court of Protection and the Public Trust Office).

The Government seems determined to make progress in an area in which those who lack mental capacity, and those who care for them, seem to be inadequately protected under the law today. Any legislation would be “of wide-ranging social significance of comparable scope and sensitivity to the Children Act.” But the question remains, will it achieve what it sets out to do? Less problematic areas that could be researched immediately include professionalised information dissemination, and greater attention to how the aim of autonomy-in-incapacity might be achieved rather than assuming that living wills are the best or only vehicle to accomplish such an end.