儿童安宁疗护研习会.doc

兒童安寧療護研習會時間：94年11月15-16日 地點：馬偕醫院淡水分院主辨單位：財團法人中華民國安寧照顧基金會、財團法人安寧療護教育資訊服務 中心、台灣安寧緩和醫學學會、台灣安寧緩和護理學會、台灣兒科醫學會、馬偕紀念醫院、國立成功大學醫學院附設醫院參加人：吳玉媛、蔡美惠主講人：Richard D. W. Hain Senior Lecturer in Paediatric Palliative Medicine Department of Child Health, Wales College of Medicine Cardiff University, Cardiff, Wales, United Kingdom Honorary Medical Officer Ty Hafan Childrens Hospice譯者簡介：林翔宇 馬偕醫院小兒科醫師林炫沛 馬偕醫院小兒科醫師一、 內容簡介2004年衛生署死因資料顯示，台灣每年有數千名末期兒童，需要提供兒童全人醫療照顧，特邀請英國兒童癌症治療和安寧療護專家Dr. Hain來台，藉著他的經驗和專業知識，講授兒童癌末的臨床處置、社會心理暨靈性照顧等議題，以提供更優質的服務。二、 英國兒童安寧療護模式介紹Introduction：Palliative care and palliative medicine：What is the ideal type and How should it be delivered？ Who needs it？ What do they need？ Who provides it？ Where are they？Myth no. 1！”Palliative care is mainly about children with cancer”What does this tell us？Two groups of needs：* Generic to all groups-Physical symptom control-Respite-Coordination of community services-Emotional/psychological/spiritual/support* Specific to some groupsMyth no. 2 ！“Doctors have little or no role to play in the palliative phase”What does this tell us ？* Needs more than one profession and discipline* Cannot be limited to one institution-School-Hospital-Hospice-HomeMyth no.3！“All palliative care is done in childrens hospices”Summary* Child with LLC is usually at home or at school.* Death is usually at home or at hospital; hospice admissions are primarily for respite.* Choice of place of death is important.* Good palliative care needs medical as well as nursing and other support.We need to develop a model of palliative care that allows：* Care to follow child, wherever they are* Good access to specialist medical and nursing expertise in palliative care* Choice for family and child of inpatient or outpatient-based management.This requires a model that is: Community-based, reaching in to hospital or Hospital or hospice based, reaching out to home and school or A pragmatic mix of the two！二、何謂兒童安寧療護（包括倫理議題）What is palliative care in children ？“an active and total approach to the care of children, embracing physical, emotional, social and spiritual elements”（Royal College of Paediatrics and Child Health, 1997）Total-three domains（physical, psychosocial and existential）It is important to remember that all symptoms have aspects in all three dimensions. It is sometimes thought that pain is a phenomenon, while guilt is an existential or spiritual one. In reality, pain will have physical, psychosocial and existential elements and so will guilt應用：1.喘息服務2.症狀控制：疼痛、喘3.倫理, Burden versus BenefitSpecialist paediatric palliative careThe nature of specialist palliative care for children is that we try to address the problems of a family in all three domains, physical, psychosocial and existential or spiritual. This cannot be done by a doctor working alone and the role of specialist paediatric palliative care is therefore to analyse and assess the multi-dimensional needs of a specific child and family, identify gaps in their care and work with others to fill those gaps.Summary* Palliative care is an active alternative to curativetreatment that is:- patient centred .- but rational* Paediatric palliative care includes:- respite care- generic palliative care- specialist palliative care* At all levels it is multi-dimensional, multi-disciplinary and multi-professional三、安寧緩和醫療的疼痛控制Pain in Children* Nature of Pain - In general- Development of pain experience* Assessment- What is it like? PQRST- How severe is it? Pain scales* Pharmacological management處理疼痛基本原則：生理層面、社會心理層面、存在面 *生理層面：藥物舒緩 Assessment of pain（三層面）- Verbal expression- Symbolic expression-play, pictures- Body language- Parental report- Carer report- Would I be in pain if it were me?How do we measure it?Dozens of scales available, but.”Quality of life”WHO的疼痛階梯三階疼痛（初階簡單止痛；次階輕量鴉片類止痛濟；三階強止痛）原則：口服優於其它；疼痛用藥無效即往上提升一階用藥；運用不同階段之輔佐藥：碼啡類用藥不依需要而訂須規律地使用Summary* Development: children experience pain at least as intensely as adults* Assessment of pain needs to be child-specific, especially for pre-verbal children.* Management of pain should be rational: - Use WHO guidelines - Initiation, titration and maintenance 四、呼吸窘迫呼吸窘迫：呼吸意味著生命因此呼不到氣易造成恐慌；也益形成惡性循環。（三層面觀點）Balance versus Benefic（Rational）舉出十種造成呼吸窘迫的情況及處理方式。Summary* Dyspnoea is subjective* but can be diagnosed rationally.* Management may be invasive* but is not always.* On balance, the treatment should always be less unpleasant than the sym