End of life decision-making in paediatrics

EDITORIAL COMMENT

End of life decision-making in paediatrics

Evidence from two studies in this issue of The Journal of Pae-diatrics and Child Health suggests that, in Australian children’shospitals, the most common pathway to a child’s death is via adecision to limit life-sustaining treatment. At the Royal Chil-dren’s Hospital in Melbourne, 84% of deaths across the hospitalin a 6-month period were preceded by a decision to limit orwithdraw treatment, with 84% of these deaths occurring inintensive care; while at the Children’s Hospital at Westmead,74% of deaths in the Paediatric Intensive Care Unit were pre-ceded by such a decision. Deaths following a decision to with-draw or withhold treatment occurred at a higher rate thanreported in previous international studies. (There are no previ-ous Australian studies). The highest figure previously reportedwas 74% in a US neonatal intensive care setting,1 and 65% inpaediatric intensive care in the US2 and UK.3

The significance of these differences, however, is not clear,because of the range of factors which can influence the circum-stances of death. Differences in the legal context and prevailingreligious beliefs, which tend to be referred to in comparisonsbetween countries, do have a major impact on what is consid-ered appropriate practice. However, unspoken norms of practicewhich have developed within individual hospitals and theirdepartments over many years also play an important role. Forexample, suppose that it has become standard practice in ahospital or ward to treat all patients aggressively to begin with,and reconsider later once the patient’s condition has becomeclearer. In that hospital, withdrawals of treatment might beexpected to be more common than in a hospital where thepractice is more conservative, and fewer patients are evenstarted on aggressive courses of management. Similarly, in orderfor a decision to be made to withhold a particular treatment,that treatment must be regarded as within the range of possibleoptions for that patient. If some treatments, though technicallypossible, are not regarded as realistic options in a particularsetting, then doctors will not regard them as being withheld.Hence it is not necessarily only population-level factors such asreligion and culture which explain differences between coun-tries. The factors may be much more local. So these two studies,important as they are, should be not be uncritically accepted asdefinitive of Australian practice. It is well worth conductingsimilar studies in other Australian hospitals to build up anoverall picture, which may show considerable variation inpractice.

The two studies in this issue also report on parental involve-ment in the decision to limit treatment. At RCH Melbourne,

there was documented family involvement in discussions withmedical staff in 98% of cases. At CHW, it was a very similarfigure of 93%. In both studies, there was only one case whereno documented evidence of family involvement existed. Theauthors of the studies report that this is consistent with studiesfrom the US, Canada and UK, which show similarly high ratesof parental involvement, but quite different from studies ofparental involvement in southern Europe, France and SouthAmerica, where there is a much lower rate of parental involve-ment. Again, the caution about explaining intercountry differ-ence applies, and consideration must be given to factors otherthan law and religious beliefs in seeking to understand andinterpret these differences.

The timing and frequency of discussions with the family isdocumented in these two studies. Both studies show that in asubstantial number of cases, more than one meeting was heldbefore a final decision was made. Both studies record the timeinterval between discussion with the family about limiting orwithdrawing treatment, and the death of child, although insomewhat different ways. The RCH study reports that in 35% ofcases, there was an interval of less than a day between the firstdiscussion about limitation of treatment and the death of thechild; and an interval of 1–7 days in a further 48%. In the CHWstudy, the interval between the decision to withdraw treatmentand the actual withdrawal was less than a day in 60% of cases,1 day in 20% and 2 or more days in 20%.

These two studies provide valuable information. They showthat in paediatric hospitals in Australia, decisions to withdrawor limit treatment are very commonly made. This is not anisolated occurrence, confined only to extreme situations orrare diseases. This fact emphasises the importance of gettingthese decisions right, and points to the weight of responsibilityborne by doctors involved in making them. The frequency ofparental involvement in the discussion highlights the impera-tive to handle these discussions well. But by its very nature,the information in these two studies raises many more ques-tions than it answers. Is this rate of death following decisionsto limit or withdraw treatment too high or appropriate? Dothese studies expose a problem, or showcase a success? Is thetime interval between the discussion with parents and thedeath of the child too short, indicating that the discussion hasbeen left until later than would have been optimal? Or is itabout right, indicating that once the decision has been made,it is acted upon quite quickly, saving the parents from pro-longed anxiety and distress, and the child from a drawn-outand perhaps painful dying process? Is it really appropriate forparents to be involved in every decision to withdraw or limittreatment, and what should be the nature and extent of thisinvolvement? These are ethical questions, which cannot beanswered by numbers alone. In that sense, they are muchmore difficult to answer than scientific questions, but no lessimportant to tackle – indeed perhaps more so. Tackling them

Correspondence: Associate Professor Lynn Gillam, University of Mel-bourne, Centre for Health and society (CHS), Parkville 3010, VIC, Australia.Fax: +61 8344 0824; email: [email protected]

Accepted for publication 16 May 2008.

doi:10.1111/j.1440-1754.2008.01350.x

Journal of Paediatrics and Child Health 44 (2008) 389–391© 2008 Paediatrics and Child Health Division (Royal Australasian College of Physicians)

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mailto:[email protected]

requires an in-depth understanding of how both parents anddoctors think through and are affected by these decisions(often better provided by qualitative rather than quantitativestudies). It also requires careful and nuanced use of ethicaltheory to identify precisely what ethical principles are at stake,in what ways, and how competing values can reconciled tothe greatest extent possible.

To take just one of these issues a little further, considerparental involvement in decision-making. There is widespreadagreement in the ethics and paediatric literature that parentsought to be involved in decisions about their child’s medicalcare, both in general, and especially in end of life situations.4–6

But it is vital to look under the surface of this agreement, tosee the different accounts that can given of why this should bedone. The rationale for involving parents may be that parentshave the ethical and legal right to be the decision-makers fortheir children (except where their decision is clearly harmful totheir child), and hence nothing can be done without theiragreement. Alternatively, the position might be that parentsshould be involved because they will have to live with what-ever decision is made, and it is generally (but not always)better for their psychological and emotional well-being in thelong term that they are involved. Another possible rationale isthat parents ought to be involved because they know theirchild better than anyone else, and will generally (but notalways) be best able to judge what it is in their child’s bestinterest.

Without going into the relative merits of these position here,the point to be made is that interest in these differences is notmerely academic. It makes a real practical difference to matterssuch as: when doctors initiate discussions with parents, whatinformation they give to parents, how they try to engageparents, and what sort of outcomes they are seeking to achieve.In particular, the different accounts of why parents should beinvolved in decisions has a major influence on whether doctorsneutrally offer a range of options for parents to choose from,4 orpresent a recommendation from the range of options, or setout a predetermined plan of management for the parents’approval.7

Discussing the impending death of a child with the parentscan never be an easy thing to do. When one of the aims of thediscussion is to make or present decisions about treatmentsthat will not be offered, or will be withdrawn, it is even moredifficult. These sorts of decisions usually mean that the childwill die sooner than if active treatment were continued.Parents may feel that by making or agreeing to such decisions,they are signing the death warrant of their child. However,not making decisions to withdraw or withhold some forms oftreatment may’ result in a drawn-out process of dying, accom-panied by multiple investigations and interventions, thusbringing about pointless suffering. Parents may equallyfeel that they must not condemn their child to this sort ofdeath.

Awareness of these sensitivities is perhaps one of the mainreasons why doctors experience these discussions with parentsas difficult. A third study reported in this issue of the Journal ofPaediatrics and Child Health shows that junior medical staff atRCH Melbourne generally do not feel comfortable discussingwithdrawal and withholding of life-sustaining treatment, even

though they are often involved in such discussions. Among themajor barriers they reported were: difficulty in engaging parentsbecause of their (i.e. parents’) disbelief in the diagnosis andprognosis, feeling that the family is not ready for the discussion,and concern about upsetting the family. If junior doctors are alsonot clear in their own minds about the ultimate rationale andpurpose of these discussions, and the appropriate role forparents to play, this would complicate matters even further forthem.

Senior medical staff saw the same issues as barriers, but theyreported greater levels of comfort in having discussions withparents. Their greater comfort levels may be explained asgreater confidence in their ability to deal with these difficulties,rather than a perception of less difficulty per se. It may also bethe case the senior doctors have, through many years of expe-rience and reflection, worked out their own ethical position onthe appropriate decision-making roles of parents and doctor.They may have determined where they stand on the spectrumwhich runs from offering open choices without comment topresenting a predetermined management plan for approval.Clarity about the ultimate purpose of a discussion with parents,and what one is aiming to achieve by it, would make the otherdifficulties more manageable.

Communication skills training is clearly important, as theauthors of this study suggest, and indeed the desire for moretraining was strongly expressed by the study participants, bothsenior and junior. Arguably, though, training in havingend-of-life discussions with parents needs to include trainingin ethics, as well as advanced training in communication skills.Training in ethics does not mean simply didactic teaching ofethical principles and ethical analysis, or the details of hospitalpolicy. It should consist primarily of thoughtful discussionof the different ethical rationales for involving parents in dis-cussions about withdrawing or withholding treatment, andthe arguments and evidence for and against these. Reflectionon one’s own practice, and the opportunity to hear aboutthe way one’s colleagues think about these matters should bean integral part. The aim would be for doctors to reach theirown considered position on who should take what role andresponsibility for making a final decision about limiting treat-ment. This would assist doctors to practise in an ethicallymindful way,8 clear about what they are seeking to achieveand why.

References

1 Wall S, Partridge J. Death in the intensive care nursery: physicianpractice of withdrawing and withholding life support. Pediatrics 1997;99: 64–70.

2 Zawistowski CA, DeVita MA. A descriptive study of children dying inthe pediatric intensive care unit after withdrawal of life-sustainingtreatment. Pediatr. Crit. Care Med. 2004; 5: 216–23.

3 Balfour-Lynn IM, Tasker RC. At the coalface – medical ethics in practice:futility and death in paediatric medical intensive care. J. Med. Ethics1996; 22: 279–81.

4 Pinnock R., Crosthwaite J. When parents refuse consent to treatmentfor young children. J. Paediatr. Child Health 2005; 41: 369–73.

5 Singh J, Lantos J, Meadow W. End-o-life after birth: death and dying in aneonatal intensive care unit. Pediatrics 2004; 114: 1620–6.

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6 American Academy of Pediatrics Committee on Bioethics. Ethics andthe care of critically ill infants and children. Pediatrics 1996; 98:149–52.

7 Baumann-Hölzle R., Maffezzoni M, Bucher HU. A framework for ethicaldecision making in neonatal intensive care. Acta Paediatr. 2005; 94:1777–83.

8 Guillemin M, Gillam L. Telling Moments: Everyday Ethics in Health Care.Sydney: IP Communications, 2006.

Lynn Gillam1,2,3

1Clinical EthicistRoyal Children’s Hospital

ParkvilleMD

2Assocate Professor in Health EthicsCentre for Health and Society

School of Population HealthUniversity of Melbourne

MelbourneFL

3Group LeaderEthics Unit

Murdoch Children’s Research InstituteParkville

MDUSA

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End of life decision-making in paediatrics