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  • 1. 8Ethical and legal aspects of burns careMALCOLM G. B O O T H FRCA, MPhilConsultant in Anaesthesia and Intensive CareDirectorate (~f Anaesthesia, Walton Building, Glasgow Royal Infirmaly, Castle Street, GlasgowG40SE UKBurns injuries affect 10 000 peopIe annually in the UK and of these 650-700 die. Manywho 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 ofincompetent patients. These decision may concern the initiation, continuation or termi-nation of treatment. The ethical principles of autonomy, beneficence, non-maleficence andjustice are described and how their application allows, both morally and legally, theinitiation and termination of treatment, even when the patient cannot be involved in thedecision. The debate surrounding advance directives which would give the patient somecontrol over what was done to him when incompetent to make decisions and euthanasiaare 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 andResearch Section, 1994). The ability to treat these patients has increaseddramatically over the last 30 years. People, who previously would havecertainly died from their injuries, are now successfully treated, although thephysical and psychological consequences may be massive. In the vastmajority of cases treatment is straightforward with few apparent ethicaldilemmas, as the patient and his carers work together as a team with thegoal of achieving the best functional and psychological outcome. A dilemma can develop when a patient is not in a position to be involvedin the decisions concerning the care needed. Prime examples are theseverely burned patients with smoke inhalation requiring ventilation orother incompetent patients with continuing clinical deterioration and organsystem failure that fails to respond to therapy. The ethical principles that guide our actions are the same whetherdealing with a minor injury or a major burn. These are discussed, with anemphasis on the critically ill patient, as it is in these cases that the issues aremore easily identified.Bailli~re k Clinical Anaesthesiology-- 497Vol. 11, No. 3, September 1997 Copyright © 1997, by Baillibre TindallISBN 0-7020-2311-6 All fights of reproduction in any form reserved0950-3501/97/030497 + 15 $12.00/00
  • 2. 498 M.O. BOOTHE T H I C A L PRINCIPLESThe discussion of medical ethics has recently become extremely fashion-able with great debate about what should and should not be done inparticular situations. It should be remembered, that medical ethics reallyonly means taking the codes that we already accept as guiding our lives,and society in general, and applying them to medical practice. In medicalethics we subscribe to four main principles: autonomy, beneficence, non-maleficence and justice. Autonomy is the concept of self-rule, independent of outside force orinfluence. An autonomous person is one recognized as having the capacityand perspective to make personal choices and decisions based uponindividual values and beliefs. In a medical context this means beingallowed to make decisions about what therapy to accept or refuse. This, ofcourse, requires the person to be provided with adequate information toenable a choice to be made. It does not allow for demanding treatment thatthe physician believes is not indicated (Brett et al, 1986). In the case of bumpatients the awake and non-intubated person may be able to actautonomously, but the intubated, ventilated or unconscious patient cannot. A person is free to decide that someone else may make decisions on hisbehalf. This remains an autonomous decision provided that it was madefreely and without coercion. Thus prior to surgery for early burn excisionand skin grafting the patient may say just do what you think best doctorand, provided this is said freely, it then remains an autonomous decision.Equally the Jehovah Witnesss acceptance of their churchs teaching withrespect to blood transfusion is an autonomous decision even if mystifyingto non-believers. It is unlikely that many patients will have discussed theirwishes with relatives prior to receiving a burn injury in particular, but theymay have discussed the consequences of severe illness or the need forintensive care treatment. Beneficence and non-maleficence are often regarded as part of the sameprinciple. They are, in fact, quite different, being the promotion of good andthe avoidance of harm respectively. Avoiding harm is probably the strongerof the two principles and is summed up in the motto primun non nocere(above all do no harm). Beneficence on the other hand involves providingbeneficial treatment while attempting to balance those benefits against anypotential associated risks. This is particularly relevant to burns researchwhich is required to advance burn care but may also be potentially harmful. Justice suggests the fair distribution of health care resources, both on anindividual level and throughout society as a whole. But what is fair? Theutilitarian view would be to maximize good, balancing public and privatebenefit. Thus if patient A has a 60% BSA (body surface area) burn andpatient B only 30% and only one can be treated, then A would miss out asgreater good (i.e. patient survival) would be achieved by treating B.Fortunately decisions such as this usually only have to be made duringtriage following a major incident. Egalitarians would argue, however, thateveryone should have an equal share of at least some goods and servicessuch as health care. All members of society should be provided with an
  • 3. E T H I C A L AND LEGAL ASPECTS 499adequate, although not necessarily maximal, level of health care within theresources available. This has been termed the decent minimal proposal. The potential cost involved in treating burn injuries are massive. In theUS it has been estimated that each person requiring in-patient treatment forburns costs from $36000-117000 (£24000-78 000) with deaths beingeven 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 costsinvolved are still potentially huge. It is for these reasons, as well as purely humanitarian ones, that manyregulations 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 inpublic places, and health and safety regulations affecting the work place allimpose restrictions on individual freedom. It is intended that the reductionin 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 peoples autonomy. There isalso a duty on every member of society not to squander limited health careresources by, for example, attempting to resuscitate people with non-survivable bums. For the distribution of a limited resource to be truly just it must beallocated as decided by society. The state of Oregon attempted this whenit balloted the population as to their health care priorities. Following this,the finite funds available were to be used for the health care priorities asdefined by the population. Not surprisingly, non-therapeutic treatmentssuch as the removal of tattoos were of low priority. Interestingly so wereapparent 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 wantedfinanced. Although this attempt to involve the public was initiallysuccessful, it was later overturned by the Supreme Court which deemedit unconstitutional.Consent: to treatmentAll physical contact between two people must be consented to and thisincludes all therapeutic contact. Any non-consensual treatment, even ifmade with good intent, is an assault. The principle of autonomy allows acompetent adult the right to accept or refuse any and all treatment offered.This principle was stated as early as 1914 by Cardozo: Every human beingof adult years and sound mind has a right to determine what shall be donewith his own body; and a surgeon who performs an operation without thepatients consent commits an assault (Schloendorff, 1914). Consent should always be sought prior to any treatment beingperformed. For a person to agree to medical treatment it is essential thats/he is aware of not just its intended benefit but, most importantly, of anyadverse effects as well. Much has been written concerning informedconsent, which recognizes the patients right to self-determination and
  • 4. 500 M . G . BOOTHtherefore the right to be fully involved with any decision being madeconcerning treatment. The courts in Scotland and England appear to rejectthe concept of informed consent based upon the subjective or reasonablepatient standards (Moyes, 1990; Re T, 1992). This is partly because trulyinformed consent cannot be given except by another expert in that field.Thus only an anaesthetist could give informed consent to undergo a generalanaesthetic and only a burns surgeon could consent to burns surgery. Moreimportantly they do require that the patient be supplied with adequateinformation in terms that the person will understand, The patient is free todecide whether or not to submit to treatment recommended by the doctorand therefore the doctor impliedly contracts to provide information whichis adequate to enable the patient to reach a balanced judgement (Sidaway, 1985). There are three circumstances where a doctor may commencetreatment in the absence of the patients consent. These are where thepatient is mentally unbalanced, the otherwise incompetent and where thepatient is a minor. A patient presenting to the hospital burned or multiply injured is oftenunable to consent or refuse to being treated. This is not an uncommon eventand appropriate treatment is always commenced, but where does thedoctors authority to institute therapy come from? Starting non-voluntarytreatment under these conditions is still an assault but one that can bejustified by the common law principle of necessity. When using this principle to defend their actions, doctors must be able toshow that the interventions were necessary to prevent death or permanentinjury to the health of the patient and needed to be commenced before thepatient could be rendered competent. No unrequired therapy must be given.For example, a Canadian surgeon performing a Caesarean section noteduterine disease, making further pregnancies medically undesirable, sosterilized the patient. The patient successfully sued him as the sterilizationwas not immediately necessary and could have been delayed until thepossibility had been discussed with the patient (Murray, 1949). Generallythe courts are very sympathetic to a doctor who, although having no formalconsent, tries to act in the best interests of the patient. It could be that in theabsence 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 hospitalunconscious or severely injured would wish appropriate therapy, there isone group of patients to whom this may not apply: the uncompleted orfailed suicides. In some studies these may make up 8-20% of admissionsfor burn injury (Jayaraman et al, 1993; Sheth et al, 1994). Assuming thatthe medical staff were confident that the patient had attempted suicide byself-immolation, could attempting to save such a persons life result in thedoctor 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 dueto the burn injury. Whether such a claim would be successful is quiteanother matter. It is highly unlikely that a court in the UK would findagainst a doctor who had acted with good intention. Certainly it wouldprobably be necessary to demonstrate some degree of evil intent on the partof the doctor (Wilson, 1986).
  • 5. ETHICAL AND LEGAL ASPECTS 501 In the burns unit and the intensive care unit (ICU) it is common practiceto approach the relatives of the incompetent patient and for them to beasked to consent on behalf of the patient. In the case of adult patients, thelaw is quite clear that neither the next of kin nor anyone else has the rightto consent to, or refuse, treatment (T v T, 1988; Re T, 1992). They may ofcourse be able to shed light on the patients own views on treatment buteven then surveys have shown great disparity between what relativesbelieve a person would request and that persons actual wishes (Seckler etal, 1991; Sulmasy et al, 1994). Consulting with family and friends does, ofcourse, establish that the actions of the medical and nursing staff werereasonable. Scalds and burns are very common amongst children. Although themortality due to scalds is low (approximately 100 children per year in theUS) the associated morbidity is high, especially in the under 5 age group.Prior to the introduction of flame resistant clothing in the 1970s, flameinjury due to the ignition of nightwear was not uncommon in children. Anyminor presenting with a burn injury requires consent for medical treatmentto be given by his proxy, usually his parent or legal guardian. Any actionby them must be reasonable, which implies it is taken in the best interestsof the child. As in the case of adults, medical staff may initiate anyemergency treatment that needs to be started before consent has beenreceived. The parents authority to make decisions on behalf of their child issubject 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 forthe child to be declared a ward of court, which then takes over the parentalrole.-This often happens when the parents religious beliefs do not allow aparticular procedure, for example Jehovah Witnesses and blood trans-fusions. The age of majority (18 years in England and 16 years in Scotland) isthe age when the child becomes an adult and assumes all the associatedresponsibilities, including being able to consent to medical treatment.Although this apparently happens overnight, many children below this ageare perfectly capable of understanding the implications of procedures suchas burn excision, and associated anaesthesia and analgesia. This iscertainly the case where repeated operations are required, as is often thecase with burns. Since the case of Gillick it has become accepted that achild who, has sufficient understanding and intelligence to be capable ofmaking 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 thementally ill. Unfortunately the current Mental Health Acts (Mental HealthAct, 1983; Mental Health (Scotland)Act 1984), although they allow non-consensual treatment in relation to mental illness, make no such provisionfor other forms of medical treatment. A scenario could arise where amentally incompetent adult could require surgery but no-one would be ableto authorize it. One way round this problem has in the past been to apply tothe court for a declaration that the planned procedure would not be
  • 6. 502 M. ~. BOOTHunlawful. Potentially this could lead to huge difficulties in providing healthcare for the mentally incompetent if such a court declaration were to beneeded on every occasion. Here, again, the principle of necessity will allowactions to be taken on acceptable clinical grounds without recourse to thecourts. In F v West Berkshire Health Authority, Lord Brandon said thelawfulness of a doctor operating on ... an adult patient disabled fromgiving consent will depend not on any approval or sanction by a court buton the question of whether the operation or other treatment is in the bestinterests of the patient concerned. That is . . . . . just as well, for, if everyoperation to be performed . . . . . required the approval or sanction of thecourt the whole process of medical care for such patients would grind to ahalt (F v West Berkshire Area Health Authority, 1989).Consent: to researchIn all areas of medicine, including burns therapy, there is a continual questto improve or introduce new treatments with the intention of reducing boththe morbidity and the mortality associated with a patients disease orillness. 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 interspeciesdifferences. The accepted norm is to perform a randomized, controlled trialto compare the new therapy with the current standard. Without such trialssteroid therapy would still be used for the treatment of smoke inhalationinjury despite causing an increase in mortality (Moylan and Chan, 1978).Alternatively the advantages of early enteral feeding over total parenteralnutrition in burns patients would not have been highlighted (Hemdon et al,1989; Alexander and Gottschlich, 1990). In fact, in these days of evidencebased medicine, introducing untested regimens is to be stronglydiscouraged. Researchers performing clinical trials have to follow the guidelineslaid down in the Declaration of Helsinki, (1975) which was drafted toprotect the interests of the patients or other volunteers taking part.Amongst the basic principles laid down is the requirement for allsubjects to, freely and without duress, give their consent to participate,or in the case of those unable to give consent, for their legal proxy todo so. Recruiting those patients able to give their consent is straight-forward. Problems arise in the case of those deemed incompetent as theycannot give consent. A considerable amount of research is carried out on the severely ill burnpatient, including those in the ICU, who are unable to provide any form ofconsent to their involvement. It has already been stated that no-one mayprovide consent on behalf of another adult; although ethics committees dorequire consent from relatives, this has no legal standing. While life savingtreatment may be commenced on the grounds of necessity, this wouldcertainly not permit randomizing patients into a clinical trial. One wayround this problem is to obtain a patients permission to enter him into atrial in advance of him becoming so unwell. This is perfectly possible when
  • 7. ETHICAL AND LEGAL ASPECTS 503the patient is initially well. For example, those patients undergoing electivesurgery requiring routine post-operative admission to the ICU. The burns victim is somewhat different. The patient often arrives at theA/E department in great pain, suffering from shock, both hypovolaemicand psychological, with poor cerebral function due to smoke inhalation.There may also be other severe, life-threatening injuries. Alcohol or otherdrug intoxication is also common at the time of presentation. Such aperson often has difficulty comprehending what is happening around himlet alone the ability to judge the implications of participating in atherapeutic trial. Research involving patients unable to give consent is problematic. Asalready stated no-one is able to provide consent on behalf of another adult.This is true both for medically indicated procedures and for research. Evenlegal guardians who may have full control over a persons business orfinancial affairs cannot provide consent. In the US proxy decision makersare allowed to act on the patients behalf. These are normally a relative orclose friend. Unfortunately unless they have previously discussed theseissues with the patient then they may be no more accurate in predicting apersons wishes than the medical or nursing staff. Another way of attempting to overcome this problem has been to be usedeferred consent. This involves entering the patient into the study withoutany consent. Later, once the patient is competent, retrospective permissionis sought for being entered into the trial. This notion makes little sense asone cannot consent meaningfully to something that has already happened.The whole point of approaching a patient for consent is that it presents anopportunity to refuse. One cannot refuse to participate in something thathas already happened (Miller, 1988). Besides, if the patient does refuse toprovide deferred consent, nothing that has been done can be undone. Asa result the patient may well feel victimized, especially if, having beenrandomized to the experimental group, s/he does not do well. The Law Commission and the Scottish Law Commission in discussiondocuments suggesting alterations to the current Mental Health Acts activelyaddress the problems of research involving the mentally incompetent fromall causes (Law Commission, 1995; Scottish Law Commission, 1995). TheScottish Law Commission recommend legalizing what is more or less thecurrent position in the UK. That is, research may be carried out on an adultwho is incapable of consenting to participate providing that certainconditions are met. These conditions are: that the research proposed is into the causes, treat-ment or care of the adults incapacity; entails only a minimal foreseeablerisk or discomfort; could not be carried out equally effectively on subjectscapable of consenting; has been approved by the Secretary of State forScotland or his representative, written consent has been obtained from thepatients proxy or nearest relative; and that there is no reason to assume thatthe patient would not have wished to take part. Even if these recom-mendations are accepted there is still the question of what constitutesminimal risk and discomfort to the patient (Karlawish and Hall, 1996;McCarthy, 1996).
  • 8. god- M.G. BOOTHADVANCE DIRECTIVESIf the incompetent patient cannot consent to treatment and nobody can doso on their behalf, then an alternative means of predicting a patients wishesis required. One such alternative could be the advanced directive, whichallows a person to document their wishes and treatment preferences shouldthey become incompetent in advance of incompetence. This is a major stepin recognizing the importance of patient autonomy as it allows the patientinfluence even if direct discussion is impossible. A major problem withadvance directives is applying them to the situation currently affecting thepatient. Some are written in such a general manner that the statement is oflittle help in determining the persons wishes. Alternatively if the contentsare too specific then the advance directive may actually act against theinterests of the patient. An example of this would be where the patientrecords a desire not to be receive renal dialysis. This could be interpretedas excluding short-term renal dialysis required to support the patientthrough a transient period of acute renal failure. The use of advanced directives is well established in the US where theterm covers both written instructions to the health care team and theappointment of a proxy to act on the patients behalf. From December1991 the Patient Self Determination Act obliged all hospitals to explain topatients their right to refuse treatment and to write a living will. The Actalso made compliance with such documents mandatory, subject to statelaw. Several problems have arisen in relation to implementing advancedirectives in the US, the most important being knowing the existence of adirective and its whereabouts when needed. This problem has beenaddressed in Denmark, where a Living Will Register has been established.Unfortunately this still depends upon doctors actually consulting theregister in order to find out if a patient has an advance directive. Unfortunately, few, if any, burns victims in the UK will have completedan advance directive. This will probably change only slowly due to the lackof clarity as to their legal standing. That a person may refuse to consentnow and in the future, even if circumstances change, is accepted.Unfortunately the UK is not as supportive of the concept of autonomy asmany other jurisdictions, such as the US. In Re T the courts agreed thatwhen an informed and competent patient makes an advanced decisionwhich is clearly recorded then the doctor would be obliged to follow it (ReT, 1992). The card carried by many Jehovahs Witness proclaiming theirrefusal of blood transfusion is probably the best known example. This isdifferent from an organ donor card which states a persons wishes afterdeath. The law does not currently hold, despite calls from the LawCommission and after a House of Lords Select Committee, that advancedirectives are legally binding. Legislation may be required in the future toclarify this position. Currently the doctor is free of liability provided s/he isseen to be acting in good faith, which may or may not mean following theadvance directive. This is hardly the way to advance the involvement ofpatients in decision making.
  • 9. ETHICAL AND LEGAL ASPECTS 505END OF LIFE DECISIONSDespite great advances in burns therapy, such as improved resuscitation,early enteral feeding and early surgical intervention, treatment is notsuccessful in every case. This is true of all illness and was recognized byHippocrates when he urged physicians not to treat those overmastered bytheir disease. Although our ability to treat a huge range of conditions isconstantly expanding we have to accept, willingly or otherwise, ourlimitations. Medicine has also become increasingly more able to prolonglife in the face of devastating injury or illness. The burn patient whobecomes septic may become dependent upon ventilatory, inotropic andrenal support. He may also be subjected to repeated surgical procedures onareas of burn that are not going to heal. In some cases life may be supportedartificially for prolonged periods without any realistic hope of recovery.There comes a point, however, at which physicians, nurses, patients andtheir relatives must face up to the difficult question of when to stop lifesustaining support for someone unable to recover. Sometimes acceptingthat a patient is going to die and allowing a dignified death is the best andonly outcome available. Increasing or re-establishing a persons autonomy and quality of lifethrough the principles of beneficence and non-maleficence may be regardedas medicines principle function. If this is the case, then the quality of lifepreserved must be of primary importance. So therefore the prolongation oflife . . . does not mean a mere suspension of the act of dying, butcontemplates, at the very least, a remission of symptoms enabling a returntowards a normal, functioning integrated existence (Dinnerstein, 1978). A competent patient is perfectly capable of deciding that his current orexpected quality of life is personally unacceptable and may, in that case,refuse any further medical interventions, even if this results in death. Thiswas 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 feedingagainst her will. A Californian court ruled that feeding could be stopped asBouvia had a right to refuse life sustaining therapy. The court pronouncedthat, no criminal or civil liability attaches to honouring a competent,informed patients refusal of medical treatment (Bouvia, 1986). Problems may appear to arise when the patient is not competent and thetreatment, proposed or already started, is deemed futile. Stopping or with-holding treatment is a relatively new area of legal involvement, especiallyin 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 hebelieves to be in the best interests of the patient. When the patient cannot be involved in the decision making processdeciding what his best interests are can be very difficult. Undoubtedly thephysicians and the health care teams values do affect the decision. Wherethere is no previous knowledge of the patients wishes or preferences, suchas an advanced directive, relatives and friends are asked about the patientsprobable wishes regarding treatment. Such substituted judgements require
  • 10. 506 M.c. BOOTHthat the surrogate, whether a friend or relative, be able to accurately forecastthe patients decision. Their ability to do this has been questioned. Sulmasyet al (1994) found that agreement between patients and surrogates rangedfrom 57 to 81%. Another study also from the US, where substituted judge-ments are often more formalized, produced similar results but also foundthat few people had discussed their resuscitation or treatment preferenceswith either family (16%) or their physician (7%) (Seckler et al, 1991). A great deal has been written concerning end of life decisions over thelast decade. Unfortunately almost all refers to patients other than the burnsvictim. The issues that need to addressed are, however, similar and will bediscussed. It has been suggested that the driving force behind the discussionand implementation of end of life decisions (i.e. limiting, withholding orwithdrawing treatment) is not the relief of the patients pain and sufferingbut purely financial. The evidence would not appear to support this. In the US, 27-30% of annual Medicare costs go to the 5-6% ofbeneficiaries who die that year. This equals $13 316 per person for thosethat die, compared to $1924 for those that do not. This gives a ratio ofhealth care dollars of 6.9:1 in favour of those who die. Over 40% of this isspent 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 withdrawingtreatment from those cases deemed as futile would also suggest littlereduction in costs. The definition of futile, predicted 2 month survival lessthan 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. Iftreatment 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 etal, 1994).Futile careIt 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 patients 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 toact rather than appearing to do nothing. Certainly it may be necessary to
  • 11. ETHICAL AND LEGAL ASPECTS 507start therapy in order to stabilize a patient and allow time for a diagnosis tobe established and a prognosis made. Should this reveal that continuing thecurrent treatment is of no benefit then it should stop. Unfortunately it isoften easier having started therapy to continue, and even escalate it. Itshould be remembered, however, that people do not expect to be offered, orsubjected to, something that is regarded as useless or hopeless. Imbus and Zawacki (1977) were probably the first to address the issueof whether or not to initiate treatment for the hopelessly injured burnpatient. Patients in whom, in their experience, survival was unprecedentedwere asked if they wished to be aggressively resuscitated or providedwith comfort care only. The idea of asking patients whether they wishedto be resuscitated, or not, was intended to bolster patients autonomy. Itwould, in fact, in these circumstances do quite the opposite. The burnvictim was apparently being offered a chance to accept or refuse effectivetreatment but it had already been decided that even with maximal supportthe burn would prove fatal. This was confirmed by the few who electedfor full treatment. The apparent choice being presented to the patient didnot exist. Where treatment is useless or the burdens outweigh any benefits, thengood medical practice requires doctors not to offer it. Ingelfinger (1980) inhis essay Arrogance stated "a physician who merely spreads out an arrayof vendibles in front of the patient (or family) and then says Go ahead andchoose, 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 theAmerican Medical Association which recommended that physiciansshould not provide, prescribe or seek compensation for services that areknown to be unnecessary or worthless (American Medical Association,1986). Defining futile therapy as treatment that is never successful is fraughtwith difficulty, especially as doctors can not say never. Schneidennan andJecker (1995) proposed that an intervention should be regarded as futile ifit has not worked in the last 100 cases, or if it fails to restore consciousnessor alleviate total dependence on intensive care support.Withholding and withdrawing treatmentWithholding treatment is often easier than withdrawing something that hasalready been started. This is especially true when the removal of activetreatment would appear to allow the patients death. Is there a differencefrom a moral standpoint between the two? The answer has to be no.Withholding antibiotics, or stopping antibiotics already started, in theabsence of a bacterial infection are both acceptable practices. The timescale 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 lesserdegree withholding therapy, in the critically ill is that it may appear to causethe persons death. There is, however, an important difference betweenwithholding or withdrawing treatment and intentionally killing someone. In
  • 12. 508 M . G . BOOTHthe former the patient is allowed to die because of something you chose notto do. It is an omission not an act.Acts and omissionsIs there a moral difference between an omission and an act? The importantdifference is less whether a person acts, or omits to act, but more whetherthe person lets something happen or makes something happen. The patient with smoke inhalation injuries who has developed adultrespiratory distress syndrome (ARDS) is ventilator dependent. If it were tofail then death would ensue as a consequence of lung injury. Similarly, if itwas decided that because of worsening organ failure the patient was notgoing to survive and ventilation should be withdrawn, then again death wouldresult because the machine was no longer preventing or delaying the patientsinevitable death, because Nature had been allowed to take its course. This is quite different from an anaesthetized patient, receiving musclerelaxants, who accidentally becomes disconnected from the ventilator;death will result if not reconnected to the ventilator. Although notreconnecting the patient again would be an omission, it makes the personsdeath as inevitable as being killed deliberately. This is an example ofmaking happen as opposed to allowing to happen. This reasoning has been supported by the courts. In several instancesthey have pronounced that when death occurs after treatment, deemedineffective, is withdrawn, then it is the underlying condition that is thecause of death and not the cessation of treatment. Lord Emslie, referring toan assault, said once the initial reckless act causing injury has beencommitted the natural consequence which the perpetrator must accept isthat the victims future depends on a number of circumstances, includingwhether any particular treatment was available, and, if it was available,whether it was medically reasonable and justifiable to attempt it and tocontinue it (Finlayson, 1978). This statement would appear to support the reasoning that doctors maywithhold or withdraw treatment considered futile. But if the license to treata patient comes from acting in that persons best interests and the treatmentno longer meets those criteria, then the license to treat has ended and so thetreatment must stop. This view was endorsed by Lord Browne-Wilkinsonin 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 patients life... 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 patients 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 butstopping or withholding anything ineffective. An alternative approach,
  • 13. ETHICAL AND LEGAL ASPECTS 509particularly in the case of the critically ill patient, is to assess whether thetreatments being performed are considered ordinary or extraordinary.Ordinary and extraordinary treatmentOrdinary and extraordinary are confusing terms when referring to medicaltreatment. Rather than meaning common and miraculous they are used todistinguish between those treatments that are useful and those that areexcessively burdensome. The important point being, does the treatmentresult in a balance of benefits that outweigh the burdens associated? Usingthis definition, the same therapy may be ordinary (imperative) in oneinstance and extraordinary (overly burdensome) under a different set ofcircumstances. For example, fluid resuscitation is essential for the treat-ment of survivable bums or ventilatory support for somebody sufferingrespiratory failure due to a curable pneumonia. The same therapies wouldbe considered excessive when applied to a person with 85% burns andsevere smoke inhalation. In the case of the burn patient, resuscitation andventilation would merely forcibly sustain the cardiorespiratory function ofsomeone who was dying.EuthanasiaVoluntary euthanasia is the intentional killing of a person, at that personsrequest, in order to relieve intolerable suffering. The term voluntaryeuthanasia actually covers two different activities. Euthanasia is when thedoctor performs the act of killing, at the persons request. Whereas if thedoctor provides the means for the patient to take their own life, for exampleby prescribing drags with an explanation of their lethal properties, then theterm 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, thendeciding to die is their autonomous right. Second, if suffering is intolerableor death inevitable, would it not be more kind, and therefore morallyjustifiable, for life to be terminated speedily? Although severely injuredpatients may request to be put out of their misery, the intentional ending ofanother persons life, in the UK, is murder regardless of the apparent goodintention 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 witheuthanasia is to render the person dead. The withholding or withdrawing ofmedical treatment merely permits the underlying disease process tocontinue. 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 theventilator continued to breathe for l 0 years. It was never suggested that sheshould be killed (Re T, 1992). Euthanasia and physician assisted suicide are illegal in the Netherlandsbut, provided the doctor acts in accordance with the requirements forprudent practice and reports the death to the public prosecutor, s/he will not
  • 14. 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 patients 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. REFERENCES*Airedale NHS Trust v Bland [1993] 1 All ER 821. Alexander JW & Gottschlich MM (1990) Nutritional immunomodulation in burn patients. Critical Care Medicine 18: 149-153. American Medical Association (1986) Current Opinions of" the Council on Ethical and Judicial ~1flairs of the American Medical Association, Section 2.17. Chicago, American Medical Association.*Atkinson S, Bihari D, Smithies M e t al (1994) Identification of futility in intensive care. Lancet 344: 1203-1206. Bouvia v Superior Court (1986) 225 Cal Rptr 297.*Brett AS & McCullough LB (1986) When patients request specific interventions. New England Jottrnal qf Medicine 315: 1347-1351. Capron AM (1994) Medical futility: strike two. Hastb~gs Centre Report 5: 42-43. Coutson J (1996) Till death us do part? BMA News Review September: 23-25. Declaration of Helsinki (revised 1975) (1994) In Mason JK & McColl RA (eds) Law and Medical Ethics, 4th edn, pp 436-438 (Appendix F). Edinburgh: Butterworths. Dinnerstein (1978) Mass App 380 N.E. 2d 134.*Dyer C (1996) Doctors and patients support fight to die. British Medical Jotnvta1313: 1354. Emmanuel EJ & Emmanuel LL (1994) The economics of dying. New England Journal of Medicine 330: 540-544.
  • 15. ETHICAL AND LEGAL ASPECTS 51 1 F v West Berkshire Area Health Authority [1989] 2 All ER 545 (HL). Finlayson~v HM Advocate [1978] SLT (Notes) 60 at 61. Gillick v West Norfolk and Wisbeck Area Health Authority [1985] All ER 402. Hemdon DN, Barrow RE, Stein M e t al (1989) Increased mortality with intravenous supplemental feeding in severely burned patients. Journal of Burn Care and Rehabilitation 10:309-313. Home Office Fire Statistics and Research Section (1994) Summary Fire Statistics: UK 1994. Government Statistic Service, London.*Imbus SH & Zawacki BE (1977) Autonomy for burned patients when survival is unprecedented. New England Journal of Medicine 297:308-311. Ingelfinger FJ (1980) Arrogance. New England Journal of Medicine 303:1506-1511. Jayaraman V, Ramakrishnan KM & Davies MR (1993) Bums in Madras, India. An analysis of 1368 patients in 1 year. Burns 19: 339-344.*Karlawish JHT & Hall JB (1996) The controversy over emergency research A review of the issues and suggestions for a resolution. American Journal of Respiratory and Critical Care Medicine 153: 499-506. Law Commission (1995) Mental incapacity. The Law Commission No 231. London, HMSO. McBride G (1991) Oregon revises health care priorities. British Medical Journal 302: 549. McCarthy CR (1996) Ethical considerations of new guidelines for emergency research. American Journal of Respiratory and Critical Care Medicine 153: 507-508. Miller BL (1988) Philosophical, ethical and legal aspects of resuscitation medicine. 1. Deferred consent and justification of resuscitation research. Critical Care Medicine 16: I059-1062. Moyes v Lothian Health Board [1990] SLT 444, p449. Per lord Caplan. Moylan JA & C h a n CK (1978) Inhalation injury--an increasing problem. Annals of Surgeo 188: 34. Murray v McMurchy [1949] 2 DLR 442. Pruitt BA & Mason AD (1996) Epidemiological, demographic and outcome characteristics of burn injury. In Hemdon DN (ed.) Total Burn Care, pp 5-15. London: WB Saunders. R v Cox [1992] 12 BMLR 38. Re Potter (1963) The Times Law Reports, 26 July.*Re T (Adult: refusal of medical treatment) [1992] 4 All ER 649 at 653. Schloendorff v Society of New York Hospital [ 1914] 105 NE 92*Schneiderman LJ & Jecker NS (1995) Wivng Medicine, pp 97-118. Baltimore, John Hopkins University Press. Scottish Law Commission (1995) Report on incapable adults. Scottish Law Commission No. 151. Edinburgh, HMSO.*Seckler AB, Meirer DE, Mulvihill M & Cammer Paris BE (1991) Substituted judgement: how accurate are proxy predictors? Annals qfbuernal Medicine 115: 289-294. Sheth H, Dziewulski P & Settle JAD (1994) Self-inflicted burns: a common way of suicide in the Asian population. A 10 year retrospective study. Burns 20: 334--335. Sidaway v Bethlem Royal Hospital Governors [1985]. 1 BMLR 132 p159. Per Lord Templeman.*Sulmasy DR Hailer K & Terry PB (1994) More talk, less paper: predicting the accuracy of substituted judgements. American Journal of Medicine 96: 432-438. T v T [1988] Fam 52. Per Wood J. Wilson v Pringle [1986] 2 All ER 440. Zinn C (1996) Doctor aids first legal euthanasia act. British Medical Journal 313: 835,