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

Guest editorial

LISTENING TO CHILDREN: MEDICALTREATMENT AND CONSENT

At the age of 16, somethmg magical happens as far as thehealth service m the Umted Kingdom is eoneemed Fewpeople feel any different, even fewer are nobeeahly differ-ent m themselves, yet this is a most important milestonem a person's life One reason for this is that it is at the ageof 16 that a young person is considered capable of givinginformed consent to medical treatment

Many of those who heheve that age really has little todo with a person's ahility to understand and consent totreatment had great hopes that the Children Act 1989would really ehange this lnflexihility, m praebee thisseems to be the exeepbon rather than the rule A numberof well worn arguments ean be put against involving ehil-dren in deeisions ahout their eare, rangmg from develop-mental theories through to eoneems ahout their lack ofability to comprehend the gravity of important decisionsA lack of research and expenenee m this area compoundsthe prejudiees of many health care staff who heheve thatchildren are incapable of giving consent

One area m which quite a lot of work has heen done ism looking at the ability of children to take part in decisionsregarding terminal care, albeit much of it from the UnitedStates Nitschke et al (1982) found that children as youngas 5 years old with terminal eaneer were able to takedeeisions about future therapy versus supporbve eare vwthor without parental involvement They put this issue tothe ehildren very bluntly, but as KUbler-Ross (1991)demonstrates, there are ways of explaining even eomplexissues like death in a ehild-fnendly way She eomparesthe d5nng ehild to a eoeoon enveloping a hutterfiy, whichemerges at the point of death leavmg the eoeoon to beburied and conbnmng its existence elsewhere This isimportant not just because of this example, useful thoughIt IS, hut because it demonstrates the importance of findingfnendly and mnovabve ways of explammg situabons toehildren

In many ways, although the subjeet is diffieult, speeialistpaediatne nurses workmg m sueh areas have a distmetadvantage when involving the ehild in giving eonsentThey will usually know the child and family well and vinllhave had the opportumty to bmld up a trustmg relabon-ship with the family Nurses m aeute or general setbngswill not neeessanly have this luxury, and the ehildren willnot always have had the elose eontact with hospitals andstaff that eontnhuted to the inereased awareness of thechildren that Nitschke et al (1982) spoke to

Although ohtammg informed consent for medical pro-cedures 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 con-sidered Alderson (1990) eites an mteresbi^ ai^umenthased on the Scottish law of moral responsibility from alawyer. Sheila MeLean, who suggests that the competenceof the decision made should he the issue rather than theage of the person making that decision This would meanthat the onus would he on the adults to justify non-mvolvement of the child m consent and decision makingAlthough this sounds like a radical proposal at first, itsimply asks that adults give children the same respect thatthey themselves expect It is mteresbng to consider howmany decisions made by adults about medical treatmentare made by people who truly understand the conse-quences of the decisions that they are making

One reason why children are not yet fully involved intheir care may he that the Children Act 1989 states that itIS the doetor's responsibility to deeide if the ehild has theeapacity to understand the nature of the treatment Quitehow doctors are expected to reach this decision is notclear Of eourse, it would he mee to think that they dis-eussed this with parents, ehildren and other health careprofessionals who eould then reach agreement The follyof competence tests are discussed by Alderson (1990) whopoints out that not only are these suhjective hut they oftenask children to show greater levels of competence than theaverage adult

As well as a lack of elanty about how to deeide whiehehildren are eompetent, a lot of doctors who will hemaking these decisions will have relabvely little expen-ence of working with children, especially in local generalhospitals where many children are sbll looked after hysurgeons canng mamly for adult pabents The implicationof this IS that sick children need a powerful advocate toensure that their views are eonsidered, a role thatwould ideally be undertaken by a parent or guardianUnfortunately, there are many reasons why this may notbe possible, and many parents feel unable to argue withwell edueated doetors who appear to have authonty ontheir side It may also be the ease that some parents do notsee the need for their ehild to have a say in deeisions abouttheir own treatment, and while this situabon ohviouslyrequires sensibve handling it is important that the ehildIS allowed to express an opinion and feel that this opimonIS valued Because paediatnc nurses may be the mostexpenenced people mvolved m the care of the child, theyshould he closely involved in these discussions anddecisions alongside the other interested parties

It IS important that the nurse is ahle to act as an advocateon behalf of the child, yet lack of knowledge, poorcommunicabon skills and the tradibonal subservience of

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Guest editonal

nurses to doctors all make this less likely (Chambers 1992)It also takes a lot of courage to stand up against the estab-lishment and perceived wisdom, be this m the form ofparents, doctors or other nurses

The real answer to this difficult problem lies deeper insociety We need to leam to respect children just as we doadults, both m regard to medical care and generallyCrompton (1992) suggests that we need to consider chil-dren as complete entities rather than simply immatureadults She also advocates a movement for 'childism', justas some people advocate femimsm, so that we leam tovalue children for what they are and not just what theywill become Part of tbis process of leaming to value chil-dren IS to value then: views and opimons, even though itIS difficult to think of values that are more fundamentalthan those embodied in the principle of informed medicalconsent by children

Edward PurssellRGN RSCN

Staff Nurse, Host Defence Umt,Great Ormond Street Hospital for Children NHS Tmst,

London WClN 3fH, England

References

Alderson P (1990) Choosing for Children Oxford UmversityPress, Oxford

Chambers M (1992) Who speaks for the children'' Joumal ofClinical 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 endstage cancer foumal ofPediatncs 101(3), 471-476

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