B. Stenson á N. McIntosh

Some ethical considerations in the neonatalintensive care area

Key words Neonatal intensive care á Ethics á Euthanasia á Consent áDecision making

Introduction

Sick newborn infants are critically dependent on thesuccess of the partnership of care which develops be-tween their parents and the clinical team. Becauseboth groups are duty-bound to promote the best in-terests of the infant and have a strong personal inte-rest in doing so, e�ective relationships usually evolve.Ideally, both parents and clinicians need to feel thatthe best possible decisions have been made for theinfant. When con¯ict arises, both groups experienceconsiderable distress and intrusive media interest candevelop as the issues are publicly dissected [18, 19, 21,23]. Because most clinicians are poorly trained inethics and moral reasoning and have an inadequateknowledge of the law [17], they are ill-equipped todeal with these situations. Di�culties can arise as aresult of misunderstandings in a number of areas. Thisarticle will consider some of the ethical and legal is-sues in relation to consent to treatment, withholdingor withdrawing life-prolonging treatment, euthanasiaand the role of ethics committees.

Parental rights and duties in relation to consent

The moral and legal position in relation to consent formedical treatment is relatively clear. Ordinarily, medicaltreatment may only proceed in the presence of a validconsent. Since newborn infants cannot make their own

choices it is the assumed but not absolute right of theirparents to give or refuse consent for them. It is morallycorrect that this right belongs ®rst to the parents' be-cause they will usually safeguard the interests of theirchild to a greater degree than will any other person [3]but it is a conditional right that is dependent on themful®lling their duty of care to the child [7]. Infants havethe same rights to life, liberty and autonomy as anyother person. Benevolent paternalism is only justi®edbecause they cannot make their own choices. Anyone,including parents, making choices for them must repre-sent their best interests. Some parents neglect theirchildren. Even if they are acting in good faith and on thebasis of strongly held religious beliefs, parents are notfree to place their children at risk by their decisions.Under these circumstances parental rights may be for-feited.

Clinicians rights and duties

Clinicians have a duty of care which compels them toprotect their patient's life and health. If a patient isinjured as a result of a failure of the doctor to ful®l thisduty then the doctor is guilty of negligence. The min-imum legal standard of competence expected of adoctor (the Bolam test) is that he act in accordancewith the practice accepted by a responsible body ofmedical men skilled in his branch of medicine [5].Treatment decisions must be consistent with the basicethical principles of bene®cence and non-male®cience.

Eur J Pediatr (1999) 158 [Suppl 1] : S13±S17 Ó Springer-Verlag 1999

B. Stenson á N. McIntosh (&)Department of Child Life and Health,University of Edinburgh,20 Sylvan Place,

Edinburgh EH9 1UW, UK,e-mail: nmcintosh@srv1.med.ed.ac.uk,Tel.: +44-131 536 0801,Fax: +44-131 536 0821

There is no duty to prolong life at all costs. In the UK,doctors alone have the right to decide whether atreatment is medically appropriate. Parents have noright to demand treatments that the doctor does notdeem to be in their child's interests unless the doctor'scompetence is in question. The courts cannot obligedoctors to any speci®c medical treatment [22] thoughthey can prohibit or authorise interventions. Doctorshave no moral or legal authority to institute routinetreatments in the absence of consent. In an emergencysituation however, their duty of care compels them toadminister treatment deemed to be in the infant's bestinterests [6]. Even if there is some doubt as to the in-fants best interests they should, in an emergency, act onthe presumption that the infant would want to besaved. Under these circumstances, if the action satis®edthe Bolam test it is likely that the courts would supportit. Other than in an emergency, doctors have no moralor legal authority to proceed without consent. Doctorsmust do their best to provide parents with su�cientinformation to allow them to make informed decisionsalthough it is debatable whether informed consent in itsfullest sense is ever achieved whatever the standard ofcommunication [10, 26].

Sources of con¯ict

There are many reasons why the best course of actionmay seem di�erent to doctors and parents. Neon-atologists are self-selected enthusiasts for innovationand technology, excited by the year on year im-provements in neonatal outcomes that have been ob-served. The great personal investment that they makein their patients can give rise to a reluctance to acceptfailure and a drive to try out new treatments that aless involved clinician may not recommend. The con-verse is also true. Experienced clinicians may be morepessimistic than parents about what the future mighthold for their child [14]. What is seen as the balanceof best interests in a given clinical situation will varybetween clinicians and within individual doctors overtime. Both changing experience and new knowledgecan alter an individual clinician's views [15, 16]. Giventhe same clinical problem some would recommendtreatment when others would believe it was futile [12].Clinicians have their own values and their decisionsare signi®cantly related to age, religious a�liation,religious activity, gender and specialisation [27]. Par-ents' values show similar variation and will be in¯u-enced by their past reproductive and personal lifehistory. This may be the ®rst major life event thatthey have had to face. The strength of their desire tobe a parent can be overwhelming. There may be littlechance of a future successful pregnancy. The conceptof futile treatment can be di�cult for them to accept[4]. Some will ®nd even a small possibility of a lifetimecaring for a dependent person too di�cult to con-template and may refuse medical intervention. Their

religious beliefs may limit the number of options thatthey see as open to them.

Minimising con¯ict

Good medical communication is the most importantfactor in avoiding con¯icts in decision making. Parentsand Carers have common interests and this should bereinforced. Parental trust and con®dence will usuallygrow in line with the amount of time spent talking withthem. It is essential to spend time listenening as well asspeaking so that you can better appreciate the parentalviews and their understanding of the situation. Thewhole medical team should be involved from the be-ginning. When di�cult moral issues are shared amongstthe caregivers, the fallibility of individual decision-makers is more easily avoided, individual sensitivities areprotected and the team is strengthened. The parentsmust feel free to consult whoever they wish but will oftenprefer a small number of experienced team members toact as the key information sharers. Communicationshould be open, honest and intimate. It is always chal-lenging. Even a normal birth is an emotionally de-manding experience. When problems arise, elation isreplaced by fear and uncertainty. The mother may beexhausted from the labour and delivery, or may still bea�ected by sedative drugs. Cultural and language bar-riers may add to the problem. Con¯icts with the widerfamily can arise. When di�erent clinicians give what isessentially the same information to parents there areinevitably di�erences in what information is received.This is a di�cult time for parents to take in and processcomplex information and events may be unfolding toorapidly for them to keep up. Clinicians and parents di�erin the degrees of importance that they attach to indi-vidual components of the information communicated[20] so feedback should be sought repeatedly to ensurethat the parental information needs are being met.

Few parents wish to be o�ered facts and statistics andbe left to decide for themselves. The doctor is generallyviewed as a trusted adviser and if the medical situation isclear, a recommendation should be made. Uncertaintyshould be acknowledged to the parents. Good factualinformation is essential. It should be clearly establishedwhat is known, what may still be discovered in the infantconcerned and what is currently unknowable [11]. Dis-cussion with trusted friends and advisers may allow theparents helpful support outside the hospital. The greaterthe openness of the process the easier it is for all to feelthere has been full and careful consideration of all rel-evant options and that the balance of moral judgementsis appropriate. When con¯ict arises its origins must beanalysed. If the parents lack con®dence in the validity ofthe medical information it may be appropriate to o�erthem the option of a second opinion. The family'sGeneral Practitioner may be able to organise someoneindependent of the hospital team directly concerned.Interpreters can help with language barriers. Speaking to

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the family's religious adviser may clarify the origins ofspeci®c moral viewpoints. The need for communicationdoes not end once a decision has been made. Cliniciansmust do their best to maintain e�ective mutually re-specting relationships with the parents in the aftermathof a contested decision if the best interests of the infantare to be maintained.

Decision making

If a decision is more a value judgement than a matter ofclear medical facts and no single path is obvious then itis reasonable that the parents' values should carry moreweight than those of the doctor because the quality offuture life for the child will be determined to a largeextent by their parents' input [8]. If an urgent decisionmust be made because the situation is one of life anddeath then the approach is relatively straightforward.Whether the key issue is one of clinician refusal oftreatment or parental refusal of consent there will be notime to consult widely on the appropriate action. Thereare only two options. If the medical facts are certain (forinstance if the parents wished active treatment of ananencephalic child or refused consent to treat a mor-phologically normal 28 week gestation infant born ingood condition) then the appropriate medical action orinaction should be taken as soon as possible and beforeany additional harm arises from the delay. Once theurgency has passed all e�orts at maintaining communi-cation should continue. There may be great di�cultysalvaging any ongoing relationship with the parents.When the degree of certainty is this high, there is littleprospect that later judicial review will not be supportive.If the medical facts are uncertain then the clinicianshould act on a presumption in favour of preserving lifeuntil the situation can be clari®ed. Continuing positiveaction without alternative authorisation is only justi®edas long as the situation remains urgent.

In the non-urgent situation there are di�erent sce-narios to consider. Firstly there may be physician refusalof treatment. If the parents are pressing the clinician toadminister a treatment that he believes is inappropriatethen e�orts should be made to resolve the disagreementthrough further communication. If these e�orts do notsucceed then the clinician should go to reasonablelengths to ®nd an alternative clinician for the family,although if good decision making practices have beenfollowed there may not be one identi®able easily. If thesemeasures do not succeed and the clinician has the sup-port of his colleagues then he should not treat ± to treatwith a therapy believed inappropriate or ine�ectivewould be tantamount to assault [1]. The parents shouldbe informed of their right to obtain judicial review ifthey wish. If the medical reasoning has been sound andthe clinician's colleagues support him then the courtswill probably do so too.

The alternative situation is where there is parentalrefusal of consent. In this situation where the treatment is

important but non-urgent, attempts should again bemade to resolve the dispute through further communi-cation. A second opinion particularly from an ac-knowledged expert may help. If these measures do notsucceed and the clinician has the support of his col-leagues in the view that the treatment is strongly in thebest interests of the child then a judicial decision shouldbe sought. Again the sharing of the information withcolleagues and presence of their support will make itmost likely that the court will support the doctor'sviewpoint but if the decision making process has lackedbalance then the court will rightly support the parentalposition.

Withdrawing or withholding life prolonging treatment

The term `medical treatment' is often used synony-mously with attempt to cure with `nursing care' beingregarded as palliation, but the medical team should beintimately involved as should the nurses with both as-pects of care. Where treatment aimed at alleviation orcure of a condition has been withdrawn, the clinicalteam always has a duty to o�er palliative care [9]. Pal-liative care should consider the child's physical needsincluding the relief of pain and other symptoms and alsoaddress the emotional and social and spiritual aspects ofcare. The child should be nursed in a pleasant, child-centred environment with sta� they trust. The child'sdignity should be respected. They should be kept clean,and food and ¯uid should be o�ered (but not forced) ona regular basis. The role of assisted feeding for infant orchild (by nasogastric tube or gastrostomy) should beconsidered very carefully and discussed fully with thefamily. It may be entirely appropriate, for example, in achild with a swallowing disorder due to progressive ne-urodegenerative disease, but would rarely be introducedfor an anorexic child with rapidly progressive, dissemi-nated malignant disease.

It is important that decisions are made calmly andwithout rush and with all evidence available. In emer-gency situations it is often doctors in training who arecalled to resuscitate collapsed or dying patients. Rigidrules, even for conditions which seem hopeless, shouldbe avoided and life-sustaining treatment should be ad-ministered and continued until a senior and more ex-perienced doctor arrives. The document published bythe Royal College of Paediatrics and Child Health out-lines ®ve situations where it might be reasonable toconsider the withdrawal [24] or withholding of life-sav-ing treatment, three of which are applicable in the neo-natal period:

1. The `No Chance' Situation. Here the child has suchsevere disease that life-sustaining treatment simplydelays death without signi®cant alleviation of su�er-ing. Medical treatment is inappropriate and if givenknowingly (futile treatment) may constitute an as-sault.

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2. The `No Purpose' Situation is the most di�cult andcontentious category. The patient may be able tosurvive with treatment, but in this situation we be-lieve that the degree of physical or mental impair-ment will be massive and it is unreasonable toexpect them or the family to bear it. The child inthis situation will never be capable of taking part indecisions regarding treatment or its withdrawal. Forinstance this would apply to the newborn infantwith profound neurological damage following severeasphyxia where microcephaly, profound develop-mental delay, blindness and quadriplegia are be-lieved to be inevitable.

3. Finally the `Unbearable' Situation. Here the familyfeel that in the face of progressive and irreversibleillness further treatment is more than can be borne.They wish to have a particular treatment withdrawnor to refuse further treatment irrespective of themedical opinion on its potential bene®t. An infantwith progressive and deteriorating respiratory failurefrom bronchopulmonary dysplasia might be consid-ered in this category.

In situations that do not ®t with these categories, orwhere there is dissent or uncertainty about the degree offuture impairment, the child's life should always besafeguarded by all in the Health Care Team in the bestway possible.

Euthanasia

Giving a medicine with the primary intent to hastendeath is unlawful but giving a medicine to relieve suf-fering which may, as a side-e�ect, hasten death is lawfuland can be appropriate. Increasing doses of analgesiamay be necessary to control pain or distress and it isrecognised in English and Scottish law that this mayshorten life. Medication in this situation is being pre-scribed for the bene®t of the patient during life not inorder to cause or hasten death.

The use of muscle paralysing agents often causesconsiderable anxiety. Withdrawal of ventilatory supportwhile paralysing agents are e�ective inevitably leads todeath within minutes. Such agents are used in infantswith severe cardiopulmonary problems to facilitate ar-ti®cial ventilation. When the decision is made to with-draw treatment, it is not necessary to withdraw theparalysing agent before the respiratory support is with-drawn. However it would be euthanasia, deliberately toinduce muscle paralysis in order to avoid the terminalgasping which sometimes occurs when ventilation iswithdrawn. Instead speci®c treatment to reduce thisdistress may be necessary if it occurs.

In some instances withdrawal of ventilatory supportwill not lead to death. In this situation it must be madeclear that euthanasia is not appropriate and that pal-liative care for discomfort is all that is appropriate: thechild must receive, and the family and the medical team

must provide, appropriate nursing care. The lives ofunexpected survivors, even when badly disabled, shouldbe respected and they should be cared for appropriately.

Role of ethics committees

In the United States the development of multidisciplin-ary institutional ethics committees has been encouragedby professional bodies [2]. They are widely recognised tobe an important resource helping with the education ofboth doctors and patients, and also for trouble shootingand case consultation when there are communicationdi�culties [25]. In UK law, ethics committees have nostatutory position. Any medical decision made remainsthe legal and professional responsibility of the doctor(consultant) concerned. The Royal College of Paediat-rics and Child Health believes that the clinical team as agroup has a moral responsibility to carry out the task ofdecision making and that it should in general not begiven to an independent ethics committee [24]. In theUK, doctors and nurses do not express widespreadsupport for such a decision making committee [17] andneither do parents [14]. Nevertheless, a clear need foreducation of health care sta� in the ethical and legalbackground to these situations has been identi®ed andeducation committees to inform and discuss di�cult is-sues in retrospect may have a useful role [13].

References

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15. Lorber J (1976) Ethical problems in the management of my-elomeningocele. J R Coll Physicians 10:47

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