Education and debate

Ethical issues in diagnosis and management of patients in the permanent vegetative state

Derick T Wade, consultant and professor in neurological disability. 

Rivermead Rehabilitation Centre, Oxford OX1 4XD

derick.wade{at}dial.pipex.com

Gastrostomy feeding has been withdrawn from around 20 people diagnosed as being in the permanent vegetative state in the United Kingdom, inevitably resulting in their death from dehydration. The clinical diagnosis is confirmed by healthcare professionals and legality is conferred by the courts, but the ethical position is not formally considered. This article outlines some specific ethical issues.

	Permanent vegetative state

The permanent vegetative state is diagnosed when a patient is unaware of himself or herself and his or her environment and there is no prospect of any change in this state by any means. The clinical characteristics and diagnosis of the condition have been established (box).^1-6 Nevertheless, the clinical diagnosis is not always easy because there is a spectrum from the vegetative state to full awareness. The border between these two states is referred to as the low awareness state.¹ No absolute definition exists for low awareness state. Generally, however, the patient behaves in a way that implies that at times he or she may be able to extract meaning from a stimulus and may be able to respond in a goal directed way. Usually the state is intermittent, with only vegetative responses being present at other times. Rarely, it may be possible to establish some form of rudimentary communication. We do not know if patients have any day-to-day memory or appreciation of their situation or whether they can experience somatic or emotional pain or pleasure.

	Legal position

The legal argument is straightforward. Patients must consent to any treatment they receive; otherwise the doctor is liable to a charge of battery. Patients in the vegetative state are unable to give consent, both literally and legally (in terms of their mental capacity). Therefore they can be treated only if it is in their best interests. That question can be referred to the High Court. "The question is not whether it is in the best interests of the patient that he should die. The question is whether it is in the best interests of the patient that his life should be prolonged by the continuance of this form of medical treatment or care."⁷ In every case the High Court has decided that a patient in the permanent vegetative state does not benefit from continued treatment and has given permission to stop treatment. It does not decree that treatment must stop.

There may be a logical inconsistency in the legal position.^8-10 The law states that the patient in a permanent vegetative state has no interest but also concludes that treatment is not in the patient's best interests. If someone has no interest, how can they also have a best interest? Counter arguments have been put forward.¹¹

	Ethical issues

This article focuses on the specific ethical aspects of managing patients who are (or may be) in the permanent vegetative state. It does not consider the ethical questions that may arise before the eventual diagnosis of permanent vegetative state. The box lists the stages involved in a decision to stop treatment in the order they are likely to arise. Each has its own ethical issues.

Considering that treatment might be stopped
Two factors may prevent the option of stopping treatment being considered. Firstly, the responsible health staff may not accept that it is ethically allowable and may therefore not raise the issue. In other words, personal beliefs about a moral issue may preclude others from making their own choice. Secondly, the organisation may not allow the process to start, perhaps believing it will be too expensive or will reflect badly on it. Again choice is being curtailed without discussion or consideration. It may, however, be illegal (and possibly unethical) to continue feeding once the patient is known or suspected to be in the permanent vegetative state.¹²

Diagnosis of vegetative state
Diagnosing the vegetative state is difficult as there is no definitive test for awareness. The neuroanatomical substrate and neurophysiological mechanisms underlying consciousness are still not understood. Indeed the nature of consciousness itself is the subject of much philosophical and neuropsychological debate.¹³ Consequently there is scope for uncertainty and error.

Establishing permanence
Similar uncertainties arise concerning the prognosis of patients diagnosed as being in the vegetative state. Interest in the vegetative state has risen because of its legal importance, and this has increased the amount of study. But we do not know whether the vegetative state as it is diagnosed now is comparable with the diagnoses made five, 15, or 50 years ago. Consequently it is difficult to evaluate much of the evidence, which is anyway weak. The anecdotes of late recovery are difficult to substantiate, and we do not know how certain the original diagnosis was or how good the recovery was. We therefore need to consider what level of certainty about the prognosis for any recovery is acceptable and whether the level of potential recovery (for example, to a low awareness state) should alter the considerations.

Decision to withdraw feeding
The decision to withdraw feeding, which is made by the High Court, needs to be set in a consistent and comprehensive ethical framework such as respect for autonomy, non-maleficence, beneficence, and justice.¹⁵

Mode of death
The last ethical question relates to the mode of death. Stopping food and water inevitably leads to death within 14 days from dehydration. Conscious people suffer greatly if they die from dehydration. Moreover, this mode of death precludes the use of any organs for transplantation, which may run counter to the patient's known wishes. It would be possible to kill the patient more directly. This might reduce the stress on and distress of relatives and health staff and allow the organs to be used, which could satisfy at least some of the patient's previous autonomy. The situation is similar to treating terminal distress in a conscious patient. We need to decide therefore whether a more direct, quicker mode of death should be allowed that would enable some organs to be used for transplantation.

	The futurebroaden the interests considered

Society has responded to the problem of patients in the permanent vegetative state by concentrating solely on patients who are undoubtedly unaware and on the specific interests of the patient, finding a legal way to allow the generally acceptable decision to be reached. As discussed above, many ethical questions remain unresolved and problems will soon arise. People who are on the margins of permanent vegetative state will increasingly come before the court. Someone may challenge the medical and legal logic of the present process, perhaps by taking a doctor to court for failing to withdraw treatment.

One solution is to broaden the consideration to include other parties and to use a full ethical accounting procedure. Thus for each question raised above (and for others I have not considered) we could first agree whose interests are legitimate and then consider each party's interests from the point of view of autonomy, beneficence, non-maleficence, and justice. The box gives some of the potential interested parties.

The main bone of contention is likely to centre on justiceis it equitable to allocate so much scarce resource to one person who is unaware for most of the time? This will not be an easy question to answer. Although healthy people may rate the quality of life of someone in the low awareness state as very low, the quality of life of people who have a specific chronic illness is determined by social factors and not the disease or impairment, and they usually rate their quality of life as reasonable.¹⁷ Patients in the low awareness state seem to want to go on living. ^{18 19} Consequently, we cannot appeal to externally imposed judgments on quality of life. We may simply have to face either rationing that culminates in the premature and avoidable death of a few people or allocating increasing resources to people who are gaining minimal benefit as judged by most other people.

	Acknowledgments

I thank all those who have discussed these issues with me, helping me to formulate my ideas. I particularly thank Claire Johnston for checking the legal statements made.

	Footnotes

Competing interests: DTW provides medicolegal reports on patients in the permanent vegetative state, but all money is paid to Nuffield Orthopaedic Centre NHS Trust.

	References

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(Accepted 18 September 2000)