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8 Ethical and legal aspects of burns care MALCOLM G. BOOTH FRCA, MPhil Consultant in Anaesthesia and Intensive Care Directorate (~f Anaesthesia, Walton Building, Glasgow Royal Infirmaly, Castle Street, Glasgow G40SE UK Burns injuries affect 10 000 peopIe annually in the UK and of these 650-700 die. Many who would have previously died now survive as the treatment of burns patients improves. Ethical dilemmas may occur when decisions need to be made about the treatment of incompetent patients. These decision may concern the initiation, continuation or termi- nation of treatment. The ethical principles of autonomy, beneficence, non-maleficence and justice are described and how their application allows, both morally and legally, the initiation and termination of treatment, even when the patient cannot be involved in the decision. The debate surrounding advance directives which would give the patient some control over what was done to him when incompetent to make decisions and euthanasia are reviewed. Key words: burns; medical ethics; consent, decision making; right to die. Each year burn injuries affect approximately 10000 people in the UK, resulting in 650-700 deaths annually (Home Office Fire Statistics and Research Section, 1994). The ability to treat these patients has increased dramatically over the last 30 years. People, who previously would have certainly died from their injuries, are now successfully treated, although the physical and psychological consequences may be massive. In the vast majority of cases treatment is straightforward with few apparent ethical dilemmas, as the patient and his carers work together as a team with the goal of achieving the best functional and psychological outcome. A dilemma can develop when a patient is not in a position to be involved in the decisions concerning the care needed. Prime examples are the severely burned patients with smoke inhalation requiring ventilation or other incompetent patients with continuing clinical deterioration and organ system failure that fails to respond to therapy. The ethical principles that guide our actions are the same whether dealing with a minor injury or a major burn. These are discussed, with an emphasis on the critically ill patient, as it is in these cases that the issues are more easily identified. Bailli~re k Clinical Anaesthesiology-- 497 Vol. 11, No. 3, September 1997 Copyright © 1997, by Baillibre Tindall ISBN 0-7020-2311-6 All fights of reproduction in any form reserved 0950-3501/97/030497 + 15 $12.00/00

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Page 1: Anestesia 5

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Ethical and legal aspects of burns care

M A L C O L M G. B O O T H FRCA, MPhil

Consultant in Anaesthesia and Intensive Care Directorate (~f Anaesthesia, Walton Building, Glasgow Royal Infirmaly, Castle Street, Glasgow G40SE UK

Burns injuries affect 10 000 peopIe annually in the UK and of these 650-700 die. Many who would have previously died now survive as the treatment of burns patients improves. Ethical dilemmas may occur when decisions need to be made about the treatment of incompetent patients. These decision may concern the initiation, continuation or termi- nation of treatment. The ethical principles of autonomy, beneficence, non-maleficence and justice are described and how their application allows, both morally and legally, the initiation and termination of treatment, even when the patient cannot be involved in the decision. The debate surrounding advance directives which would give the patient some control over what was done to him when incompetent to make decisions and euthanasia are reviewed.

Key words: burns; medical ethics; consent, decision making; right to die.

Each year burn injuries affect approximately 10000 people in the UK, resulting in 650-700 deaths annually (Home Office Fire Statistics and Research Section, 1994). The ability to treat these patients has increased dramatically over the last 30 years. People, who previously would have certainly died from their injuries, are now successfully treated, although the physical and psychological consequences may be massive. In the vast majority of cases treatment is straightforward with few apparent ethical dilemmas, as the patient and his carers work together as a team with the goal of achieving the best functional and psychological outcome.

A dilemma can develop when a patient is not in a position to be involved in the decisions concerning the care needed. Prime examples are the severely burned patients with smoke inhalation requiring ventilation or other incompetent patients with continuing clinical deterioration and organ system failure that fails to respond to therapy.

The ethical principles that guide our actions are the same whether dealing with a minor injury or a major burn. These are discussed, with an emphasis on the critically ill patient, as it is in these cases that the issues are more easily identified.

Bailli~re k Clinical Anaesthesiology-- 497 Vol. 11, No. 3, September 1997 Copyright © 1997, by Baillibre Tindall ISBN 0-7020-2311-6 All fights of reproduction in any form reserved 0950-3501/97/030497 + 15 $12.00/00

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ETHICAL PRINCIPLES

The discussion of medical ethics has recently become extremely fashion- able with great debate about what should and should not be done in particular situations. It should be remembered, that medical ethics really only means taking the codes that we already accept as guiding our lives, and society in general, and applying them to medical practice. In medical ethics we subscribe to four main principles: autonomy, beneficence, non- maleficence and justice.

Autonomy is the concept of self-rule, independent of outside force or influence. An autonomous person is one recognized as having the capacity and perspective to make personal choices and decisions based upon individual values and beliefs. In a medical context this means being allowed to make decisions about what therapy to accept or refuse. This, of course, requires the person to be provided with adequate information to enable a choice to be made. It does not allow for demanding treatment that the physician believes is not indicated (Brett et al, 1986). In the case of bum patients the awake and non-intubated person may be able to act autonomously, but the intubated, ventilated or unconscious patient cannot.

A person is free to decide that someone else may make decisions on his behalf. This remains an autonomous decision provided that it was made freely and without coercion. Thus prior to surgery for early burn excision and skin grafting the patient may say 'just do what you think best doctor' and, provided this is said freely, it then remains an autonomous decision. Equally the Jehovah Witness's acceptance of their church's teaching with respect to blood transfusion is an autonomous decision even if mystifying to non-believers. It is unlikely that many patients will have discussed their wishes with relatives prior to receiving a burn injury in particular, but they may have discussed the consequences of severe illness or the need for intensive care treatment.

Beneficence and non-maleficence are often regarded as part of the same principle. They are, in fact, quite different, being the promotion of good and the avoidance of harm respectively. Avoiding harm is probably the stronger of the two principles and is summed up in the motto 'primun non nocere' (above all do no harm). Beneficence on the other hand involves providing beneficial treatment while attempting to balance those benefits against any potential associated risks. This is particularly relevant to burns research which is required to advance burn care but may also be potentially harmful.

Justice suggests the fair distribution of health care resources, both on an individual level and throughout society as a whole. But what is fair? The utilitarian view would be to maximize good, balancing public and private benefit. Thus if patient A has a 60% BSA (body surface area) burn and patient B only 30% and only one can be treated, then A would miss out as greater good (i.e. patient survival) would be achieved by treating B. Fortunately decisions such as this usually only have to be made during triage following a major incident. Egalitarians would argue, however, that everyone should have an equal share of at least some goods and services such as health care. All members of society should be provided with an

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ETHICAL AND LEGAL ASPECTS 499

adequate, although not necessarily maximal, level of health care within the resources available. This has been termed the 'decent minimal' proposal.

The potential cost involved in treating burn injuries are massive. In the US it has been estimated that each person requiring in-patient treatment for burns costs from $36000-117000 (£24000-78 000) with deaths being even more costly, ranging from $250 000-1.5 million (£166 000-1 million) (Pmitt et al, 1996). Health care is less expensive in the UK but the costs involved are still potentially huge.

It is for these reasons, as well as purely humanitarian ones, that many regulations are in place to prevent or limit the consequences of fires. Building regulations, installing smoke alarms in public housing, regu- lations controlling clothing and furnishing fabrics, restricting smoking in public places, and health and safety regulations affecting the work place all impose restrictions on individual freedom. It is intended that the reduction in the incidence and severity of burn injury (beneficence/non-maleficence) which avoids diverting resources away from other areas of health care (justice) will outweigh the adverse effect on people's autonomy. There is also a duty on every member of society not to squander limited health care resources by, for example, attempting to resuscitate people with non- survivable bums.

For the distribution of a limited resource to be truly just it must be allocated as decided by society. The state of Oregon attempted this when it balloted the population as to their health care priorities. Following this, the finite funds available were to be used for the health care priorities as defined by the population. Not surprisingly, non-therapeutic treatments such as the removal of tattoos were of low priority. Interestingly so were apparent heroic attempts to salvage pre-term neonates of poor viability (McBride, 1991). The treatment of survivable injuries, including bums, where included in the range of treatments that the public wanted financed. Although this attempt to involve the public was initially successful, it was later overturned by the Supreme Court which deemed it unconstitutional.

Consent: to treatment

All physical contact between two people must be consented to and this includes all therapeutic contact. Any non-consensual treatment, even if made with good intent, is an assault. The principle of autonomy allows a competent adult the right to accept or refuse any and all treatment offered. This principle was stated as early as 1914 by Cardozo: 'Every human being of adult years and sound mind has a right to determine what shall be done with his own body; and a surgeon who performs an operation without the patient's consent commits an assault' (Schloendorff, 1914).

Consent should always be sought prior to any treatment being performed. For a person to agree to medical treatment it is essential that s/he is aware of not just its intended benefit but, most importantly, of any adverse effects as well. Much has been written concerning 'informed consent', which recognizes the patient's right to self-determination and

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therefore the right to be fully involved with any decision being made concerning treatment. The courts in Scotland and England appear to reject the concept of informed consent based upon the subjective or reasonable patient standards (Moyes, 1990; Re T, 1992). This is partly because truly informed consent cannot be given except by another expert in that field. Thus only an anaesthetist could give informed consent to undergo a general anaesthetic and only a burns surgeon could consent to burns surgery. More importantly they do require that the patient be supplied with adequate information in terms that the person will understand, 'The patient is free to decide whether or not to submit to treatment recommended by the doctor and therefore the doctor impliedly contracts to provide information which is adequate to enable the patient to reach a balanced judgement' (Sidaway, 1985). There are three circumstances where a doctor may commence treatment in the absence of the patient's consent. These are where the patient is mentally unbalanced, the otherwise incompetent and where the patient is a minor.

A patient presenting to the hospital burned or multiply injured is often unable to consent or refuse to being treated. This is not an uncommon event and appropriate treatment is always commenced, but where does the doctor's authority to institute therapy come from? Starting non-voluntary treatment under these conditions is still an assault but one that can be justified by the common law principle of 'necessity'.

When using this principle to defend their actions, doctors must be able to show that the interventions were necessary to prevent death or permanent injury to the health of the patient and needed to be commenced before the patient could be rendered competent. No unrequired therapy must be given. For example, a Canadian surgeon performing a Caesarean section noted uterine disease, making further pregnancies medically undesirable, so sterilized the patient. The patient successfully sued him as the sterilization was not immediately necessary and could have been delayed until the possibility had been discussed with the patient (Murray, 1949). Generally the courts are very sympathetic to a doctor who, although having no formal consent, tries to act in the best interests of the patient. It could be that in the absence of consent a doctor has a duty, in law, to act in this way.

While there is a general assumption that a person presenting to hospital unconscious or severely injured would wish appropriate therapy, there is one group of patients to whom this may not apply: the uncompleted or failed suicides. In some studies these may make up 8-20% of admissions for burn injury (Jayaraman et al, 1993; Sheth et al, 1994). Assuming that the medical staff were confident that the patient had attempted suicide by self-immolation, could attempting to save such a person's life result in the doctor being sued for an assault? Theoretically the answer has to be yes, especially if the victim were to recover with a diminished quality of life due to the burn injury. Whether such a claim would be successful is quite another matter. It is highly unlikely that a court in the UK would find against a doctor who had acted with good intention. Certainly it would probably be necessary to demonstrate some degree of evil intent on the part of the doctor (Wilson, 1986).

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In the burns unit and the intensive care unit (ICU) it is common practice to approach the relatives of the incompetent patient and for them to be asked to consent on behalf of the patient. In the case of adult patients, the law is quite clear that neither the next of kin nor anyone else has the right to consent to, or refuse, treatment (T v T, 1988; Re T, 1992). They may of course be able to shed light on the patient's own views on treatment but even then surveys have shown great disparity between what relatives believe a person would request and that person's actual wishes (Seckler et al, 1991; Sulmasy et al, 1994). Consulting with family and friends does, of course, establish that the actions of the medical and nursing staff were reasonable.

Scalds and burns are very common amongst children. Although the mortality due to scalds is low (approximately 100 children per year in the US) the associated morbidity is high, especially in the under 5 age group. Prior to the introduction of flame resistant clothing in the 1970s, flame injury due to the ignition of nightwear was not uncommon in children. Any minor presenting with a burn injury requires consent for medical treatment to be given by his proxy, usually his parent or legal guardian. Any action by them must be reasonable, which implies it is taken in the best interests of the child. As in the case of adults, medical staff may initiate any emergency treatment that needs to be started before consent has been received.

The parents' authority to make decisions on behalf of their child is subject to it being exercised reasonably and in the best interests of the child. Should they fail in this responsibility then an application may be made for the child to be declared a ward of court, which then takes over the parental role.-This often happens when the parents' religious beliefs do not allow a particular procedure, for example Jehovah Witnesses and blood trans- fusions.

The age of majority (18 years in England and 16 years in Scotland) is the age when the child becomes an adult and assumes all the associated responsibilities, including being able to consent to medical treatment. Although this apparently happens overnight, many children below this age are perfectly capable of understanding the implications of procedures such as burn excision, and associated anaesthesia and analgesia. This is certainly the case where repeated operations are required, as is often the case with burns. Since the case of Gillick it has become accepted that a child who, 'has sufficient understanding and intelligence to be capable of making up his own mind on the matter requiring decision' may do so (Gillick, 1985).

The third group of patients who are unable to consent to treatment are the mentally ill. Unfortunately the current Mental Health Acts (Mental Health Act, 1983; Mental Health (Scotland)Act 1984), although they allow non- consensual treatment in relation to mental illness, make no such provision for other forms of medical treatment. A scenario could arise where a mentally incompetent adult could require surgery but no-one would be able to authorize it. One way round this problem has in the past been to apply to the court for a declaration that the planned procedure would not be

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unlawful. Potentially this could lead to huge difficulties in providing health care for the mentally incompetent if such a court declaration were to be needed on every occasion. Here, again, the principle of necessity will allow actions to be taken on acceptable clinical grounds without recourse to the courts. In F v West Berkshire Health Authority, Lord Brandon said 'the lawfulness of a doctor operating on . . . an adult patient disabled from giving consent will depend not on any approval or sanction by a court but on the question of whether the operation or other treatment is in the best interests of the patient concerned. That is . . . . . just as well, for, if every operation to be performed . . . . . required the approval or sanction of the court the whole process of medical care for such patients would grind to a halt' (F v West Berkshire Area Health Authority, 1989).

Consent: to research

In all areas of medicine, including burns therapy, there is a continual quest to improve or introduce new treatments with the intention of reducing both the morbidity and the mortality associated with a patient's disease or illness. While much experimental work may be performed on animals, there comes a point where any new therapy must be validated on humans. This is particularly true with bums as there is good evidence of interspecies differences. The accepted norm is to perform a randomized, controlled trial to compare the new therapy with the current standard. Without such trials steroid therapy would still be used for the treatment of smoke inhalation injury despite causing an increase in mortality (Moylan and Chan, 1978). Alternatively the advantages of early enteral feeding over total parenteral nutrition in burns patients would not have been highlighted (Hemdon et al, 1989; Alexander and Gottschlich, 1990). In fact, in these days of evidence based medicine, introducing untested regimens is to be strongly discouraged.

Researchers performing clinical trials have to follow the guidelines laid down in the Declaration of Helsinki, (1975) which was drafted to protect the interests' of the patients or other volunteers taking part. Amongst the basic principles laid down is the requirement for all subjects to, freely and without duress, give their consent to participate, or in the case of those unable to give consent, for their legal proxy to do so. Recruiting those patients able to give their consent is straight- forward. Problems arise in the case of those deemed incompetent as they cannot give consent.

A considerable amount of research is carried out on the severely ill burn patient, including those in the ICU, who are unable to provide any form of consent to their involvement. It has already been stated that no-one may provide consent on behalf of another adult; although ethics committees do require consent from relatives, this has no legal standing. While life saving treatment may be commenced on the grounds of necessity, this would certainly not permit randomizing patients into a clinical trial. One way round this problem is to obtain a patient's permission to enter him into a trial in advance of him becoming so unwell. This is perfectly possible when

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the patient is initially well. For example, those patients undergoing elective surgery requiring routine post-operative admission to the ICU.

The burns victim is somewhat different. The patient often arrives at the A/E department in great pain, suffering from shock, both hypovolaemic and psychological, with poor cerebral function due to smoke inhalation. There may also be other severe, life-threatening injuries. Alcohol or other drug intoxication is also common at the time of presentation. Such a person often has difficulty comprehending what is happening around him let alone the ability to judge the implications of participating in a therapeutic trial.

Research involving patients unable to give consent is problematic. As already stated no-one is able to provide consent on behalf of another adult. This is true both for medically indicated procedures and for research. Even legal guardians who may have full control over a person's business or financial affairs cannot provide consent. In the US proxy decision makers are allowed to act on the patient's behalf. These are normally a relative or close friend. Unfortunately unless they have previously discussed these issues with the patient then they may be no more accurate in predicting a person's wishes than the medical or nursing staff.

Another way of attempting to overcome this problem has been to be use 'deferred consent'. This involves entering the patient into the study without any consent. Later, once the patient is competent, retrospective permission is sought for being entered into the trial. This notion makes little sense as one cannot consent meaningfully to something that has already happened. The whole point of approaching a patient for consent is that it presents an opportunity to refuse. One cannot refuse to participate in something that has already happened (Miller, 1988). Besides, if the patient does refuse to provide 'deferred consent', nothing that has been done can be undone. As a result the patient may well feel victimized, especially if, having been randomized to the experimental group, s/he does not do well.

The Law Commission and the Scottish Law Commission in discussion documents suggesting alterations to the current Mental Health Acts actively address the problems of research involving the mentally incompetent from all causes (Law Commission, 1995; Scottish Law Commission, 1995). The Scottish Law Commission recommend legalizing what is more or less the current position in the UK. That is, research may be carried out on an adult who is incapable of consenting to participate providing that certain conditions are met.

These conditions are: that the research proposed is into the causes, treat- ment or care of the adult's incapacity; entails only a minimal foreseeable risk or discomfort; could not be carried out equally effectively on subjects capable of consenting; has been approved by the Secretary of State for Scotland or his representative, written consent has been obtained from the patient's proxy or nearest relative; and that there is no reason to assume that the patient would not have wished to take part. Even if these recom- mendations are accepted there is still the question of what constitutes minimal risk and discomfort to the patient (Karlawish and Hall, 1996; McCarthy, 1996).

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ADVANCE DIRECTIVES

If the incompetent patient cannot consent to treatment and nobody can do so on their behalf, then an alternative means of predicting a patient's wishes is required. One such alternative could be the advanced directive, which allows a person to document their wishes and treatment preferences should they become incompetent in advance of incompetence. This is a major step in recognizing the importance of patient autonomy as it allows the patient influence even if direct discussion is impossible. A major problem with advance directives is applying them to the situation currently affecting the patient. Some are written in such a general manner that the statement is of little help in determining the person's wishes. Alternatively if the contents are too specific then the advance directive may actually act against the interests of the patient. An example of this would be where the patient records a desire not to be receive renal dialysis. This could be interpreted as excluding short-term renal dialysis required to support the patient through a transient period of acute renal failure.

The use of advanced directives is well established in the US where the term covers both written instructions to the health care team and the appointment of a proxy to act on the patient's behalf. From December 1991 the Patient Self Determination Act obliged all hospitals to explain to patients their right to refuse treatment and to write a living will. The Act also made compliance with such documents mandatory, subject to state law.

Several problems have arisen in relation to implementing advance directives in the US, the most important being knowing the existence of a directive and its whereabouts when needed. This problem has been addressed in Denmark, where a Living Will Register has been established. Unfortunately this still depends upon doctors actually consulting the register in order to find out if a patient has an advance directive.

Unfortunately, few, if any, burns victims in the UK will have completed an advance directive. This will probably change only slowly due to the lack of clarity as to their legal standing. That a person may refuse to consent now and in the future, even if circumstances change, is accepted. Unfortunately the UK is not as supportive of the concept of autonomy as many other jurisdictions, such as the US. In Re T the courts agreed that when an informed and competent patient makes an advanced decision which is clearly recorded then the doctor would be obliged to follow it (Re T, 1992). The card carried by many Jehovah's Witness proclaiming their refusal of blood transfusion is probably the best known example. This is different from an organ donor card which states a person's wishes after death. The law does not currently hold, despite calls from the Law Commission and after a House of Lords Select Committee, that advance directives are legally binding. Legislation may be required in the future to clarify this position. Currently the doctor is free of liability provided s/he is seen to be acting in good faith, which may or may not mean following the advance directive. This is hardly the way to advance the involvement of patients in decision making.

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END OF LIFE DECISIONS

Despite great advances in burns therapy, such as improved resuscitation, early enteral feeding and early surgical intervention, treatment is not successful in every case. This is true of all illness and was recognized by Hippocrates when he urged physicians not to treat those 'overmastered' by their disease. Although our ability to treat a huge range of conditions is constantly expanding we have to accept, willingly or otherwise, our limitations. Medicine has also become increasingly more able to prolong life in the face of devastating injury or illness. The burn patient who becomes septic may become dependent upon ventilatory, inotropic and renal support. He may also be subjected to repeated surgical procedures on areas of burn that are not going to heal. In some cases life may be supported artificially for prolonged periods without any realistic hope of recovery. There comes a point, however, at which physicians, nurses, patients and their relatives must face up to the difficult question of when to stop life sustaining support for someone unable to recover. Sometimes accepting that a patient is going to die and allowing a dignified death is the best and only outcome available.

Increasing or re-establishing a person's autonomy and quality of life through the principles of beneficence and non-maleficence may be regarded as medicine's principle function. If this is the case, then the quality of life preserved must be of primary importance. So therefore the 'prolongation of life . . . does not mean a mere suspension of the act of dying, but contemplates, at the very least, a remission of symptoms enabling a return towards a normal, functioning integrated existence' (Dinnerstein, 1978).

A competent patient is perfectly capable of deciding that his current or expected quality of life is personally unacceptable and may, in that case, refuse any further medical interventions, even if this results in death. This was exemplified by Elizabeth Bouvia who, severely paralysed and suffer- ing continuous and intractable pain, decided to stop eating and starve her- self to death. Her doctors subsequently instituted nasogastric feeding against her will. A Californian court ruled that feeding could be stopped as Bouvia had a right to refuse life sustaining therapy. The court pronounced that, 'no criminal or civil liability attaches to honouring a competent, informed patient's refusal of medical treatment' (Bouvia, 1986).

Problems may appear to arise when the patient is not competent and the treatment, proposed or already started, is deemed futile. Stopping or with- holding treatment is a relatively new area of legal involvement, especially in the UK, so legal thought is still developing. The ethical principles, how- ever, remain the same. In such instances the doctor is obliged to do what he believes to be in the best interests of the patient.

When the patient cannot be involved in the decision making process deciding what his best interests are can be very difficult. Undoubtedly the physician's and the health care team's values do affect the decision. Where there is no previous knowledge of the patient's wishes or preferences, such as an advanced directive, relatives and friends are asked about the patient's probable wishes regarding treatment. Such substituted judgements require

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that the surrogate, whether a friend or relative, be able to accurately forecast the patient's decision. Their ability to do this has been questioned. Sulmasy et al (1994) found that agreement between patients and surrogates ranged from 57 to 81%. Another study also from the US, where substituted judge- ments are often more formalized, produced similar results but also found that few people had discussed their resuscitation or treatment preferences with either family (16%) or their physician (7%) (Seckler et al, 1991).

A great deal has been written concerning end of life decisions over the last decade. Unfortunately almost all refers to patients other than the burns victim. The issues that need to addressed are, however, similar and will be discussed. It has been suggested that the driving force behind the discussion and implementation of end of life decisions (i.e. limiting, withholding or withdrawing treatment) is not the relief of the patient's pain and suffering but purely financial. The evidence would not appear to support this.

In the US, 27-30% of annual Medicare costs go to the 5-6% of beneficiaries who die that year. This equals $13 316 per person for those that die, compared to $1924 for those that do not. This gives a ratio of health care dollars of 6.9:1 in favour of those who die. Over 40% of this is spent in the last month of life, but only 3.3% would be saved by encourag- ing the use of advance directives to limit heroic and ineffective inter- ventions (Emmanuel and Emmanuel, 1994).

A study from the US into financial savings to be made by withdrawing treatment from those cases deemed as futile would also suggest little reduction in costs. The definition of futile, predicted 2 month survival less than 1%, was fulfilled by 115 of the 4302 patients in the study. A total of $224 million was spent, with the futile group costing $8.9 million. If treatment had been stopped when its futility was first recognized, then only $1.08 million would have been saved, only 0.48% of the total (Capron, 1994). A similar study in the UK produced comparable results (Atkinson et al, 1994).

F u t i l e care

It is important to accept that some forms of therapy, in a particular instance, are futile. That is, the therapy is not able to bring about the intended good. Recognizing the futility of a treatment has three important benefits:

1. It prevents the continuation of often distressing treatment when any hope of benefit has gone. Simple humanity demands that the patient's suffering be minimized.

2. If treatment is not going to be beneficial then recognition of this will allow the patient and family to come to terms with this fact. The patient is then able to prepare himself personally and his affairs. It may also provide an opportunity for any family tensions or feuds to settle.

3. The principle of justice requires that finite resources not be squandered on those unable to benefit from them.

There is often a temptation, especially with the critically ill, to be seen to act rather than appearing to do nothing. Certainly it may be necessary to

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start therapy in order to stabilize a patient and allow time for a diagnosis to be established and a prognosis made. Should this reveal that continuing the current treatment is of no benefit then it should stop. Unfortunately it is often easier having started therapy to continue, and even escalate it. It should be remembered, however, that people do not expect to be offered, or subjected to, something that is regarded as useless or hopeless.

Imbus and Zawacki (1977) were probably the first to address the issue of whether or not to initiate treatment for the hopelessly injured burn patient. Patients in whom, in their experience, survival was unprecedented were asked if they wished to be aggressively resuscitated or provided with comfort care only. The idea of asking patients whether they wished to be resuscitated, or not, was intended to bolster patients' autonomy. It would, in fact, in these circumstances do quite the opposite. The burn victim was apparently being offered a chance to accept or refuse effective treatment but it had already been decided that even with maximal support the burn would prove fatal. This was confirmed by the few who elected for full treatment. The apparent choice being presented to the patient did not exist.

Where treatment is useless or the burdens outweigh any benefits, then good medical practice requires doctors not to offer it. Ingelfinger (1980) in his essay 'Arrogance' stated "a physician who merely spreads out an array of vendibles in front of the patient (or family) and then says 'Go ahead and choose, its your life,' is guilty of shirking his duty, if not of malpractice". This is supported by the Council on Ethical and Judicial Affairs of the American Medical Association which recommended that 'physicians should not provide, prescribe or seek compensation for services that are known to be unnecessary or worthless' (American Medical Association, 1986).

Defining futile therapy as treatment that is never successful is fraught with difficulty, especially as doctors can not say 'never' . Schneidennan and Jecker (1995) proposed that an intervention should be regarded as futile if it has not worked in the last 100 cases, or if it fails to restore consciousness or alleviate total dependence on intensive care support.

Withholding and withdrawing treatment

Withholding treatment is often easier than withdrawing something that has already been started. This is especially true when the removal of active treatment would appear to allow the patient's death. Is there a difference from a moral standpoint between the two? The answer has to be no. Withholding antibiotics, or stopping antibiotics already started, in the absence of a bacterial infection are both acceptable practices. The time scale is different but the intention, to avoid ineffective or harmful treat- ment, is the same in both cases.

One of the arguments against withdrawing treatment, and to a lesser degree withholding therapy, in the critically ill is that it may appear to cause the person's death. There is, however, an important difference between withholding or withdrawing treatment and intentionally killing someone. In

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the former the patient is allowed to die because of something you chose not to do. It is an omission not an act.

Acts and omissions

Is there a moral difference between an omission and an act? The important difference is less whether a person acts, or omits to act, but more whether the person lets something happen or makes something happen.

The patient with smoke inhalation injuries who has developed adult respiratory distress syndrome (ARDS) is ventilator dependent. If it were to fail then death would ensue as a consequence of lung injury. Similarly, if it was decided that because of worsening organ failure the patient was not going to survive and ventilation should be withdrawn, then again death would result because the machine was no longer preventing or delaying the patient's inevitable death, because Nature had been allowed to take its course.

This is quite different from an anaesthetized patient, receiving muscle relaxants, who accidentally becomes disconnected from the ventilator; death will result if not reconnected to the ventilator. Although not reconnecting the patient again would be an omission, it makes the person's death as inevitable as being killed deliberately. This is an example of making happen as opposed to allowing to happen.

This reasoning has been supported by the courts. In several instances they have pronounced that when death occurs after treatment, deemed ineffective, is withdrawn, then it is the underlying condition that is the cause of death and not the cessation of treatment. Lord Emslie, referring to an assault, said 'once the initial reckless act causing injury has been committed the natural consequence which the perpetrator must accept is that the victim's future depends on a number of circumstances, including whether any particular treatment was available, and, if it was available, whether it was medically reasonable and justifiable to attempt it and to continue it' (Finlayson, 1978).

This statement would appear to support the reasoning that doctors may withhold or withdraw treatment considered futile. But if the license to treat a patient comes from acting in that person's best interests and the treatment no longer meets those criteria, then the license to treat has ended and so the treatment must stop. This view was endorsed by Lord Browne-Wilkinson in Bland:

'If there comes a stage where the responsible doctor comes to the reasonable conclusion.., that further continuance of an intrusive life support system is not in the best interests of the patient, he can no longer lawfully continue that life-support system; to do so would constitute the crime of battery and the tort of trespass to the person. Therefore he cannot be in breach of any duty to maintain the patient's l i fe . . . perpetuation of life can only be achieved if it is lawful to continue to invade the body integrity of the patient by invasive medical care. Unless the doctor has reached.., the conclusion that it is in the patient's best interest to continue invasive care, such care must stop' (Airedale NHS Trust v Bland, 1993).

With the burn victim this means continuing effective treatment but stopping or withholding anything ineffective. An alternative approach,

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E T H I C A L A N D L E G A L A S P E C T S 509

particularly in the case of the critically ill patient, is to assess whether the treatments being performed are considered ordinary or extraordinary.

Ordinary and extraordinary treatment

Ordinary and extraordinary are confusing terms when referring to medical treatment. Rather than meaning common and miraculous they are used to distinguish between those treatments that are useful and those that are excessively burdensome. The important point being, does the treatment result in a balance of benefits that outweigh the burdens associated? Using this definition, the same therapy may be 'ordinary' (imperative) in one instance and 'extraordinary' (overly burdensome) under a different set of circumstances. For example, fluid resuscitation is essential for the treat- ment of survivable bums or ventilatory support for somebody suffering respiratory failure due to a curable pneumonia. The same therapies would be considered excessive when applied to a person with 85% burns and severe smoke inhalation. In the case of the burn patient, resuscitation and ventilation would merely forcibly sustain the cardiorespiratory function of someone who was dying.

Euthanasia

Voluntary euthanasia is the intentional killing of a person, at that person's request, in order to relieve intolerable suffering. The term voluntary euthanasia actually covers two different activities. Euthanasia is when the doctor performs the act of killing, at the person's request. Whereas if the doctor provides the means for the patient to take their own life, for example by prescribing drags with an explanation of their lethal properties, then the term physician assisted suicide is used.

There are two main arguments in support of voluntary euthanasia. First, if a patient feels that their suffering no longer makes life worth living, then deciding to die is their autonomous right. Second, if suffering is intolerable or death inevitable, would it not be more kind, and therefore morally justifiable, for life to be terminated speedily? Although severely injured patients may request to be put out of their misery, the intentional ending of another person's life, in the UK, is murder regardless of the apparent good intention leading to the act (R v Cox, 1992).

Withholding or withdrawing of ineffective or excessive treatment is not, as some pro-life protagonists would argue, euthanasia. The intention with euthanasia is to render the person dead. The withholding or withdrawing of medical treatment merely permits the underlying disease process to continue. Nothing is done to speed up or bring about death. Karen Quinlan, who was one of the first 'right to die' cases, when removed from the ventilator continued to breathe for l 0 years. It was never suggested that she should be killed (Re T, 1992).

Euthanasia and physician assisted suicide are illegal in the Netherlands but, provided the doctor acts in accordance with the requirements for prudent practice and reports the death to the public prosecutor, s/he will not

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510 M.G. BOOTH

be prosecuted. The only jurisdiction to actually legalize euthanasia has been the Northern Territory of Australia. The Rights of the Terminally Ill Act (1996) allows euthanasia after strict guidelines have been followed. Currently two people had made use of this legislation. This bill may yet be overturned as it is challenged in the Australian High Court (Zinn, 1996) (Overturned by the Australian Parliament, April 1997.)

There is increasing support for a change in the law in the UK to allow either voluntary euthanasia or physician assisted suicide. Interestingly, a survey of public attitudes showed a bias towards euthanasia, while those doctors questioned preferred assisted suicide. This suggests that neither party actually wishes to take responsibility for the act (Coulson, 1996; Dyer, 1996).

CONCLUSIONS

Burns patients must be encouraged to participate in decisions concerning their care. This may include declining any, or all, life sustaining treatments. If incompetent then no other adult may provide consent and treatment decisions are then guided by what are thought to be the patient's best interests. This includes decisions concerning terminating therapy. Advance directives or designated proxies to aid decision making, while desirable, are not currently lawful despite an obvious need for this problem to be addressed.

If the best interests of the patient require treatment to be withheld or withdrawn, then that may, indeed should, be done. Nothing may be done, however, to expedite the death of a patient. Also, until legislation is passed to the contrary, euthanasia remains murder.

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