2

consultation

dr- "i'm afraid ur child has cystic fibrosis.. yada yada.."

elder- "i'm nt gonna tell her abt this. she's just 12 years old. i wnt her to live nw.. nt with worries. i cnt stand to think she can accept this at such an age."

dr- "i have to be frank tt i still encourage u to let her knw abt this. so we can have an effective management plan on her disease. let her knw.. let her have control. let her start to realise her condition so she can gain strength as disease progresses.."

elder- "im nt gonna tell.. no matter wt" (wch is the most impossible case, she'll knw it sooner later)

dr- "i've no obligation to tell her as long as you decide its inappropriate. still im encouraging u for the other side. and dun u expect her as she grows up tt she won't find out smethn is wrong with her. i sincerely advise you not to delay in this" (its a bit paternalistic but its all acting in patient's best interest, ters no legal obligation for disclosing information but still tt patient is a minor- parent's rule!)

----->
comment: disclosing info is probably easier than treatment, since ter is no legal liability. i still cant get it right- i tght all patients have the right to know abt their disease. the literature talks abt 'consent', 'autonomy', 'competence' all in regards to decision-making on treatment, there is none on disclosing info. so i guess its more of an ethical thing tt u respect parent's decision not to disclose info to their child.

(parent's decided)

child- "can it be cured?"

dr- "no.. unfortunately no.."

child- "why do i have the disease?"

dr- " both of ur parents are carriers. tt once they're given birth to you, u have 1 in 4 chance of getting the disease and.. you stand in tt 1 in 4."

child- "will i die?.."

dr- (... i have to revert)
"along the way, u'll find it a 'bit' hard.. u'll be living a life wch need greater care for urself.. as long as we manage this well, work thru this together, u'll live a considerably good life."

child- "how long will i live..?"

dr- (u look at her parents, in the hardest way)
"patients of CF can live up to 30s and some able to go up to 40s.." u hesitate for a moment. being empathetic, u let emotions settle in.. then u say

"look.. 'her name'. i knw this is gonna be hard. but i bliv u can do this.. we'll work this together. mom and dad, me and you.. i want you to knw tt i'll be as frank to u as hw i am to ur mom and dad. i wnt u to knw abt ur condition.. all abt it.. tngs tt gonna happen and i wnt u.. to take control of it. dun let it beat u down.. try ur best to beat the disease"
----->

man.. stress. so even tt im just practising.. :)

the point to take into account here is tt patient is both a child and is suffering frm a futile, non-curable disease.
aim of consult is:

in child's respect- let child knw abt the disease. when it cmes to breaking bad news, she has to knw the detail in general (how long she lives, wt will happen).
aim is to let her gain an expectation and be self-prepared. dr's role to instill support medically, emotionally and bring focus to 'patient-centred' care. let patient gain control and involvement over chronic illness. both patient's n dr's role equal power.

in parent's respect- educate parents abt on-coming manifestations. treatments, therapeutic needs and social support services. report on child's daily life and behavioral aspects.

comment: communication is very important here. u nt only need to have a good prior knowledge & background abt the disease, but u also need to knw wt to say to ur patients.. plus wt's appropriate. tts the hardest part. :s

- keith