Editorial Children Decision Making

Joumal of Advanced Nursing, 1995,21,623-624

Guest editorial LISTENING TO CHILDREN: MEDICAL TREATMENT AND CONSENT At the age of 16, somethmg magical happens as far as the health service m the Umted Kingdom is eoneemed Few people feel any different, even fewer are nobeeahly different m themselves, yet this is a most important milestone m a person's life One reason for this is that it is at the age of 16 that a young person is considered capable of giving informed consent to medical treatment Many of those who heheve that age really has little to do with a person's ahility to understand and consent to treatment had great hopes that the Children Act 1989 would really ehange this lnflexihility, m praebee this seems to be the exeepbon rather than the rule A number of well worn arguments ean be put against involving ehildren in deeisions ahout their eare, rangmg from developmental theories through to eoneems ahout their lack of ability to comprehend the gravity of important decisions A lack of research and expenenee m this area compounds the prejudiees of many health care staff who heheve that children are incapable of giving consent One area m which quite a lot of work has heen done is m looking at the ability of children to take part in decisions regarding terminal care, albeit much of it from the United States Nitschke et al (1982) found that children as young as 5 years old with terminal eaneer were able to take deeisions about future therapy versus supporbve eare vwth or without parental involvement They put this issue to the ehildren very bluntly, but as KUbler-Ross (1991) demonstrates, there are ways of explaining even eomplex issues like death in a ehild-fnendly way She eompares the d5nng ehild to a eoeoon enveloping a hutterfiy, which emerges at the point of death leavmg the eoeoon to be buried and conbnmng its existence elsewhere This is important not just because of this example, useful though It IS, hut because it demonstrates the importance of finding fnendly and mnovabve ways of explammg situabons to ehildren In many ways, although the subjeet is diffieult, speeialist paediatne nurses workmg m sueh areas have a distmet advantage when involving the ehild in giving eonsent They will usually know the child and family well and vinll have had the opportumty to bmld up a trustmg relabonship with the family Nurses m aeute or general setbngs will not neeessanly have this luxury, and the ehildren will not always have had the elose eontact with hospitals and staff that eontnhuted to the inereased awareness of the children that Nitschke et al (1982) spoke to Although ohtammg informed consent for medical procedures IS a job for medicad staff, nurses have an important

role, through the umque relabonship hetween child, family and nurse, to ensure that the child's views are considered Alderson (1990) eites an mteresbi^ ai^ument hased on the Scottish law of moral responsibility from a lawyer. Sheila MeLean, who suggests that the competence of the decision made should he the issue rather than the age of the person making that decision This would mean that the onus would he on the adults to justify nonmvolvement of the child m consent and decision making Although this sounds like a radical proposal at first, it simply asks that adults give children the same respect that they themselves expect It is mteresbng to consider how many decisions made by adults about medical treatment are made by people who truly understand the consequences of the decisions that they are making One reason why children are not yet fully involved in their care may he that the Children Act 1989 states that it IS the doetor's responsibility to deeide if the ehild has the eapacity to understand the nature of the treatment Quite how doctors are expected to reach this decision is not clear Of eourse, it would he mee to think that they diseussed this with parents, ehildren and other health care professionals who eould then reach agreement The folly of competence tests are discussed by Alderson (1990) who points out that not only are these suhjective hut they often ask children to show greater levels of competence than the average adult As well as a lack of elanty about how to deeide whieh ehildren are eompetent, a lot of doctors who will he making these decisions will have relabvely little expenence of working with children, especially in local general hospitals where many children are sbll looked after hy surgeons canng mamly for adult pabents The implication of this IS that sick children need a powerful advocate to ensure that their views are eonsidered, a role that would ideally be undertaken by a parent or guardian Unfortunately, there are many reasons why this may not be possible, and many parents feel unable to argue with well edueated doetors who appear to have authonty on their side It may also be the ease that some parents do not see the need for their ehild to have a say in deeisions about their own treatment, and while this situabon ohviously requires sensibve handling it is important that the ehild IS allowed to express an opinion and feel that this opimon IS valued Because paediatnc nurses may be the most expenenced people mvolved m the care of the child, they should he closely involved in these discussions and decisions alongside the other interested parties It IS important that the nurse is ahle to act as an advocate on behalf of the child, yet lack of knowledge, poor communicabon skills and the tradibonal subservience of 623

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nurses to doctors all make this less likely (Chambers 1992) It also takes a lot of courage to stand up against the establishment and perceived wisdom, be this m the form of parents, doctors or other nurses The real answer to this difficult problem lies deeper in society We need to leam to respect children just as we do adults, both m regard to medical care and generally Crompton (1992) suggests that we need to consider children as complete entities rather than simply immature adults She also advocates a movement for 'childism', just as some people advocate femimsm, so that we leam to value children for what they are and not just what they will become Part of tbis process of leaming to value children IS to value then: views and opimons, even though it IS difficult to think of values that are more fundamental than those embodied in the principle of informed medical consent by children Edward Purssell RGN RSCN Staff Nurse, Host Defence Umt, Great Ormond Street Hospital for Children NHS Tmst, London WClN 3fH, England

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References Alderson P (1990) Choosing for Children Oxford Umversity Press, Oxford Chambers M (1992) Who speaks for the children'' Joumal of Clinical Nursing 1(2), 73-76 Children Act 1989 An Introductory Guide for the NHS (1992) HMSO, London Crompton M (1992) Children and Counselling Edward Arnold, London KUbler-Ross E (1991) The dymg child In Children and Death (Papadatou D & Papadatos C eds). Hemisphere, New York, pp 147-160 Nitschke R, Humphrey B , Sexauer C , Catron B , Wimder S & Jay S (1982) Therapeubc choices made by pabents with end stage cancer foumal ofPediatncs 101(3), 471-476