Journal of Neonatal Nursing (2006) 12, 216e221

www.intl.elsevierhealth.com/journals/jneo

How low shall we go? Is aggressive care alwaysjustifiable?

Anne Chatfield

Special Care Baby Unit, Mid Staffordshire General Hospital, Stafford, UK

Available online 9 November 2006

KEYWORDSEnhanced practice;Moral;Ethical;Best interests;Withdrawalof treatment;Autonomy;Decision-making

Abstract There is no doubt that advancing medical technology has producedmany benefits and enabled the survival of extremely premature infants. But atwhat cost? The Advanced Nurse Practitioner is in a unique position to forge theway ahead for nurse involvement in ethical decision-making. However, they mustbe able to recognise ethical problems and be capable of reasoning ethically to enterthe debate arena. This article discusses some of the dilemmas in resuscitation ver-sus prematurity and looks at the decision-making process of such an event involvingthe advanced nurse practitioner, doctors and the parents.ª 2006 Neonatal Nurses Association. Published by Elsevier Ltd. All rights reserved.

Introduction

Technological advances in medicine have impor-tant repercussions on the world of nursing. Medicaland nursing care professionals are increasinglyfaced with moral and ethical questions for whichthere are no obvious solutions.

Neonatal intensive care is an area where hi-techmedicine has been remarkably successful. But thequestions of ‘‘who is the best advocate for thebaby’’ and ‘‘when is the extraordinary use oftechnology appropriate’’ and ‘‘what is an accept-able outcome’’, have become increasingly unclearas our ability to rescue extremely low birth weightinfants continues to improve. Hack and Fanaroff

E-mail address: anne.chatfield@msgh-tr.wmids.nhs.uk

1355-1841/$ - see front matter ª 2006 Neonatal Nurses Associatiodoi:10.1016/j.jnn.2006.09.008

(1999) supports this, commenting that advancesin perinatal care have improved the chances forsurvival of extremely low birth weight (< 800 g)and gestational age (< 26 weeks) infants.

The improved survival rates among some infantsborn in the middle to late second trimester, whowere previously considered non-viable, has led tothe spurious assumption that life can be sustainedin live born infants irrespective of gestational ageor birth weight. Graham (1999, p. 23) supports thissaying that:

The rapid pace of technological innovation hassurpassed what were once fundamental assertionsregarding birth, life and death and redefining life’smilestones has profoundly affected the way soci-ety appraises the value of life itself. In theneonatal care unit societies expectations are that

n. Published by Elsevier Ltd. All rights reserved.

How low shall we go? 217

the smallest and sickest babies should be givenevery chance to survive.

One of the most vulnerable groups is the verylow birth weight (VLBW) baby. These are babiesunder 1000 g at birth. The deterioration of theircondition due to intraventricular haemorrhagesputs them at an extremely high risk of death or dis-ability. Graham (1999) concurs saying that there isa high possibility that some of these 25 week ges-tation 500 g neonates will if they survive emergewith moderate to severe mental and physicalimpairments.

Data collected by Hack and Fanaroff (1999) con-cluded that a review of the literature and their ownexperiences reveals that at 23 weeks gestation sur-vival rates range from 2% to 35% and at 25 weeksgestation from 35% to 85%. Major neonatal morbid-ity increases with decreasing age and birth weight.The rates of severe cranial ultrasound abnormalityrange at 23 weeks gestation from 10% to 83% and at25 weeks gestation from 10% to 22%. They con-cluded that with current methods of care the limitsof viability have been reached.

The continuing toll of major neonatal morbidityand neurodevelopment handicap are still of seri-ous concern. This is reiterated by the final reportof the Confidential Enquiry into Stillbirths andDeaths in Infancy (CESDI) (Maternal and ChildHealth Research Consortium, 2003). This revealedthat preterm baby survival rates in the UnitedKingdom could be substantially improved. It alsohighlighted that communication with the parentsis a critical issue.

It is clear then that advanced medical technol-ogy has saved the lives of these low birth weightinfants, but it is at times very difficult to feela sense of professional achievement about some ofthe results.

Decisions to make/ethical dilemmas

Right to live/right to die

The right to live is said to be the birthright of alland to be alive is to demand active life support.However the right to die is seen as the right ofeveryone whose life is too burdensome to be born(Goodall, 1984).

Supporters of the life at all costs hold that thevalue of life surpasses the burden of living,conviction tends to outweigh compassion. Sup-porters of the freedom to choose, hold thatunbearable burden justifies the decision to end itall, compassion tends to outweigh conviction.

The balance between these two can only bemade carefully considering individual needs, neverby arbitrary abstractions and certainly not byindiscriminate laws. If the decision not to continuetreatment of tiny infants is made, this decision toallow the death of such vulnerable patients needsto be ethically justified. One must ask, who shouldbe responsible for the decision and also by whatprocess the decision should be made to protect therights of the child? (Goodall, 1984).

Society as a whole has not yet decided who makesdecisions related to the right to life or death andwho is responsible for the quality of life of neo-natal patients. (Raines, 1996, cited in Graham,1999).

The Hippocratic Oath suggests a pledge not topractice euthanasia, expressing a duty of non-malfeasance (‘doing no harm’) together withbeneficence (Gill, 1994).

Doctors like parents and everyone else who hasa duty to act, are not permitted to kill a child byany positive act or omission, which causes thedeath of a child (Gill, 1994). However, in somecases where the patient would have a life that isnot worth living, then a court of law would not in-sist that a doctor prolong a patient’s life.

It is still an area where a degree of uncertaintyprevails, however, as Campbell and McHalfie(1995, p. 343) states:

The fact remains that for any decision to withholdor withdraw life-prolonging treatment, the legalposition of the doctor remains somewhat unclearin the absence of any testing in court.

The argument ‘is it killing or letting die’ issummed up in The Latest Decalogue by A.H. Clough(1860), cited in Johnson (1993, p. 635); see alsoNicholson (1975).

Thou shalt not kill, but needs not strive officiouslyto keep alive.

The most difficult of these dilemmas concernedwith life and death are perhaps moat poignantly atthe beginning of life and in the neonatal intensivecare unit.

Quality of life

Much ethical debate surrounds the doctrines ofsanctity of life and quality of life. The idea thatlife is ‘sacred’ is a long held view and only hasmeaning within a religious context (Campbell andMcHalfie, 1995).

Quality of life in itself is a somewhat meaning-less phrase usually; when we talk of this we prefix

218 A. Chatfield

it with the adjective good or bad. In reality,however, can we decide what is good or bad,benefit or burden, this will vary with the circum-stances and in the perceptions of differentindividuals.

Typically parents speak for the child and mostoften base their choices on paternal love. If theimmediate family is uncertain or divided, thegeneral approach is to continue with resuscitation.Some practitioners argue that it will be impossibleto make a diagnosis and prognosis before startingtreatment. Campbell (1992, p. 43) supports thisstatement saying:

It is a reasonable approach because it gives eachinfant a ‘trial of life’ and allows time to reduce thelevel of uncertainty that always remains about the‘rightness’ or ‘wrongness’ of these decisions.

However, often-prolonged treatment results inmeaningless suffering and this is regarded asmorally wrong and therefore should be prevented.

Thus the decision to initiate treatment whichmay save life should be based not only on thejudgment that life should be preserved despitethe risk of handicap, but also on the judgment thatthe value of preserving life outweighs the sufferingtreatment will cause (Kuhse and Singer, 1985;cited in Gill, 1994).

As a quality of life statement this is reiteratedby Geddes et al. (1992, pp. 280e283) who states,

As to the principle of non-malfeasance (‘doing noharm’), does this mean we do not prolong the livesof neonates when a state of being alive in a patientwhose experience of his environment could only bepainful. Is this a treatment where burdens out-weigh the benefits?

Also Capron (1995) agrees (cited in Graham,1999, p. 24),

Sometimes continuing with care that seems futileis not only inappropriate but immoral as it prolongssuffering.

On the other hand in the early 1970s and 1980sbefore many outcomes of these neonates wereknown, some opinions were different as Weir(1984; cited in Gill, 1994) argues saying that ex-tremely premature infants cannot be said to beborn dying, and thus fall into the general categoryof non-dying neonates, who should receive vigor-ous treatment.

Jakobovitis (1975) agrees (cited in Gill, 1994, p.449):

The sanctity of life principle allows for no neonatalexceptions to treatment.

However, it is more ethically and emotionallydifficult to withdraw treatment than withhold it.Campbell (1992, p. 43) supports this statementsaying,

Once we have started treatment, it may beimpossible to stop.

Although it is commonly considered that there isa difference in moral terms between action andomission (to provoke injury is worse than not doinganything to prevent it), as regards resuscitationthere is very little difference between the two inreal terms since both have the same outcome,death. As a result a congruent ethical approach isdifficult to achieve.

Best interest principle

Surrogate decision-making is necessary in neo-natal contexts, as neonates have no way ofrepresenting themselves. The decision-makingprocess differs in neonates from other cases,which typically involve a once autonomous personno longer making decision for themselves, butwhose interests are well enough known to othersto permit them to make decisions on their behalf.(Spence, 2000).

However neonates have never been autonomoushence cannot have developed such interests.Spence (2000, p. 1287) agrees saying:

The difference concerning neonates is critical,they have not developed significantly as individ-uals with appropriate interests.

Given the uniqueness factor, the relevant in-terests are in the present such as comfort andwell-being, and the potential interests are fordevelopment, likely quality of life and the com-mitment of family.

Central to the issue of autonomy is the questiondoes the person need to be aware to have in-terests? To answer this we can use two positionsoutlined by Kennedy (1988) (cited in Spence,2000).

The first position considers that someone mayonly have interests if they are conscious of theexistence of interests. Clearly according to thisnewborns have no interests and no claim to lifesustaining treatments. The alternative position isthat of holding interests in trust, with the trusteemaking decisions. The decisions made by thetrustees are intended to provide the infants witha future where they can take responsibility fortheir own decisions.

How low shall we go? 219

From a personal perspective I support Kennedy’ssecond position as I believe that their humanitygrants them interests, and I respect their futurepotential.

Ethical decisions and enhanced nursingpractice

The advanced nurse is continually faced withtherapeutic and morally based decisions such asissues concerning quality of life or discontinuingtreatment. Parents look to nurses for guidancebased on their experience and understanding ofcomplex decisions. As Bissell (2004) highlights, thepositive effect that the high level practitioner canhave at micro and macro level by enforcing theexercise of best evidence and good practice.

Recognition of an ethical problem is not easyand like all forms of decision-making, ethicaldecision-making is a learnt skill (Brophy, 2002).

The neonatal care environment has been re-garded as one of the most high stress areas in thehospital. Ethical and moral dilemma’s relating toplans of treatment, continuing or withdrawing ofcare or resuscitation are detrimental to the phys-ical and mental well being of nurses if they are nothandled appropriately (Lui, 2003). Brophy (2002,p. 138) states,

Neonatal nurses are at the cutting edge of futur-istic care and are often involved in complex ethicaldecision-making.

The nurse must take a deliberate action thatmay be risky in nature. Thus the nurse is account-able for her actions. Because a moral principle isinvolved the action taken should be intelligent,reflective and free. She, like everyone else whentaking on the role of advanced practice is entitledand indeed morally required, to discuss the rela-tive moral pros and cons.

Bricket (1990) (cited in Ellis, 1993) on the otherhand sees no place in nursing for ethics. Nursing isstressful and demanding in itself so why should thenurse have to make decisions that so called ‘supe-riors’ are so well qualified to do. This statement isshort sighted, at best.

As far back as 1966 Henderson urged that everynurse has to develop her own concept (of morality),otherwise she is merely imitating others.

Brown et al. (1992) (cited in Ellis, 1993) saysthat rather than being the hard, unforgiving taskmaster, ethics is a tool that we can use to makesense of the problems that rest in professionalpractice. Ethically there is no such thing as a moralsuperior and our so-called superiors are not

necessarily better trained or better placed tomake ethical decisions.

These statements are of even more importancenow with the development of the advanced nurserole, as Ashworth et al. (1998) says that many ofthe roles are directed towards the acquisitionand practice of aspects of care which traditionallyhave been assigned to medical staff. As a conse-quence the boundaries between medicine andnursing are becoming increasingly blurred.

Wilkinson (1995) (cited in Ashworth et al., 1998)found that nurses had much to offer and whenundertaking medical activities are less judgmental,display greater empathy and perceive patientsmore holistically.

Although the advanced nurse will continue to beresponsible and accountable for the care theyprovide within a medical environment, they arerequired to work in a collaborative manner withthe consultant. It is the consultant who delegatesresponsibilities of care and remains both legallyand professionally responsible for overall care.Thus it is vital that there is close and frequentco-operation, trust and liaison between all parties.

Woodall (1999, p. 9) agrees saying,

A collaborative practice approach to decision-making, by utilising specific scientific knowledgeto focus on therapeutic options available, shouldimprove quality of care.

There are however important differences be-tween doctors and nurses in terms of territoriesand spatial occupancy that affect the nature oftheir contacts with patients and just as impor-tantly their families.

The advanced neonatal nurse is ideally placedto be the lead care professional for a neonate andtheir family and as Snelgrove and Hughes (2000, p.664) concludes,

It is the very restriction of the nurse to one areawhich leads to more intensive contact with pa-tients and thus more knowledge of their conditionsand personal circumstances.

Where nurses emphasised their role as decision-makers in the treatment process, they often re-ferred to areas where continuing contact with thepatients placed them in a good position to makejudgments about the patients’ needs.

This gives the advanced neonatal nurse an idealposition to recognise ethical problems faced atresuscitation and immediately following this pro-cedure and the implications of each situation onthe neonate and the parents. As the report intoConfidential Enquiry into Stillbirths and Deathsin Infancy (CESDI) (Maternal and Child Health

220 A. Chatfield

Research Consortium, 2003) has highlighted, com-munication with parents, although not life endan-gering at this time, is a critical issue, confirmingthat lack of information or poor communicationadds greatly to the already stressful situationthat the parents find themselves in. The advancedneonatal nurse practitioner can therefore be ofgreat support and resource to the parents at thisdifficult time.

Conclusion

The development of critical thinking and decision-making skills is a necessary requirement to enablethe advanced nurse practitioner to become anexpert practitioner in pioneering neonatal nursingcare.

It is suggested that the inclusion of nurses in theethical decision-making process may lower nursesperceived stress levels as it is felt that theadvanced nurse will have sufficient knowledge toparticipate in the ethical decision-making processof withdrawal of care and they would take intoaccount multiple factors such as autonomy, bestinterest, quality of life and family support oftreatment withdrawal.

The advanced nurse practitioner will only beable to practice under a collaborative model ifdoctors allow them to do so by supporting theircontributions to the decision-making process andhave faith in their ability as independentpractitioners.

The neonatal intensive care unit is a valuableand ethically justifiable speciality, as the progres-sively decreasing mortality rates show. However,this technology should be applied with discretionand the burden of care must correspond with itsgoals, which relate to more than just survival. Theadvanced nurse must establish as part of their roleevolution, why nurses should act as patient advo-cates particularly promoting ethical practice andhaving the confidence and ability to examine theseproblems in a morally responsible way.

When a baby has been longed for, whose choiceis it to let the baby live or die? Who sets patternsand boundaries of care? Medical, nursing or paren-tal? It is obviously an issue that cannot be taken byan isolated person. It is multi professional trustand support that is of importance. Each person hashis or her own moral codes and personal values,which must be considered.

There is no doubt that life can be terminatedintentionally by an action or omission. But theseare not necessarily equivalent and suggestions that

a doctor forgoes life-prolonging treatment, sayingthat the omission is equivalent to killing, must berejected. No amount of philosophical discussionobscures the fact that common sense must be theguide in many cases. Each child and situation mustbe considered on an individual basis, not byarbitrary law.

Where delivery of care is concerned, it is theparental and multi professional view that theadvanced nurses need to be concerned with informing their own decisions of care. A myriad offactors affect the way in which a moral decision ismade. What is needed is an open and informeddiscussion in which everyone is regarded as eachother’s moral equal. When we realise that thereare no moral superiors, we are well on the way toachieving the best possible outcome in even themost difficult of circumstances.

References

Ashworth, C., Carton, A., Dady, I., Faulkener, J., Marshall, A.,March 1998. Providing opportunities for role development:ENB R23. Enhancing Neonatal Nursing Practice. Journal ofNeonatal Nursing pp. 8e11.

Bissell, B., 2004. The phenomenon of high-level nursing practicewithin neonatal units: who does it? Journal ofNeonatal Nursing10 (1), 21e25.

Bricket, A., 1990. Ethical issues e making life and death deci-sions. Nursing Standard 4 (19), 43.

Brophy, M., 2002. What is an ethical decision? Recognisinga problem with moral issues. Journal of Neonatal Nursing18 (5), 38e139.

Brown, J., Kitson, A., McKnight, T., 1992. Challenge in Caring.Exceptions in Nursing and Ethics. Chapman and Hall,London.

Campbell, A., 1992. Ethical problems in neonatal care. In:Robertson, N. (Ed.), Textbook on Neonatology, second ed.Churchill Livingstone, London, pp. 43e48.

Campbell, A., McHalfie, H., 1995. Prolonging life and allowingdeath in infants. Journal of Medical Ethics 21, 339e344.

Key points

1. At the onset of resuscitation there is littleindication as to what the outcome may be,therefore, the decision-making process isnot easy.

2. Withholding or withdrawing treatment canbe one of the most stressful situations thatthe advanced nurse may face.

3. Good communications between healthcareprofessionals and families is crucial at thistime.

4. The advanced nurse should seize the op-portunity to lead ethical practice ratherthan stand on the sideline.

How low shall we go? 221

Capron, A., 1995. Baby Ryan and virtual futility. Hastings CentreReport 25 (2), 20e21.

Ellis, P., 1993. Role of ethics in modern healthcare 2. BritishJournal of Nursing 2 (3), 83e185.

Geddes, S., Pace, N., Hallworth, D., 1992. Selectively withhold-ing treatment from newborn babies. British Journal of Hospi-tal Medicine 47 (4), 280e283.

Gill, S., September 1994. Are we obliged to keep very pre-mature infants alive? British Journal of Midwifery 2 (9),448e452.

Goodall, J., September 1984. Ethical dilemmas in neonatalcare. Maternal and Child Health pp. 276e279.

Graham, S., 1999. Futile care in the neonatal intensive careunit. Is aggressive care always justifiable? Journal of Neona-tal Nursing 5 (4), 23e26.

Hack, M., Fanaroff, A., 1999. Early human development out-come of children of extremely low birth weight and gesta-tional age in the 1990s. Midwifery Digest 9 (3), 375e376.

Jakobovitis, I., 1975. Jewish Medical Ethics. Block Publishing,New York.

Johnson, K., 1993. A moral dilemma: killing and letting die.British Journal of Nursing 2 (12), 635e640.

Kennedy, I., 1988. Treat me Right. Essays in Medical Law andEthics. Clarendon Press, Oxford.

Kuhse, H., Singer, P., 1985. Should the Baby Live? Oxford Univer-sity Press, Oxford.

Lui, D., 2003. Nursing and midwifery attitudes towards with-drawal of care in neonatal intensive care unit. Journal ofNeonatal Nursing 9 (2), 45e49.

Maternal and Child Health Research Consortium, May 2003. AnEnquiry into Quality Care and the Effect on the Outcomeof the Preterm Baby Confidential Enquiry into Still Birthsand Deaths in Infancy. 8th Annual Report Project 27/28(CESDI). London Midwifery Digest pp. 249.

Nicholson, R., 1975. Should the patient be allowed to die? Jour-nal of Medical Ethics 1, 5e9.

Raines, D., 1996. Parents values. A missing link in the neonatalintensive care equation. Neonatal Network 15 (3), 7e12.

Snelgrove, S., Hughes, D., 2000. Interprofessional relationsbetween doctors and nurses. Journal of Advanced Nursing31 (3), 661e667.

Spence, K., 2000. The best interest principle as a standard fordecision making in the care of neonates. Journal ofAdvanced Nursing 31 (6), 1286e1292.

Weir, R., 1984. Selective Nontreatment of Handicapped New-borns. Moral Dilemmas in Neonatal Medicine. Oxford Univer-sity Press, Oxford.

Wilkinson, C., 1995. Nurse practitioners. Do they enhancepatient care? British Journal of Nursing 4 (1), 6e7.

Woodall, T., 1999. Who should decide? Decision making in theevent of unexpected stillbirth. Journal of Neonatal Nursing5 (4), 18e22.