1、兒童緩和照護的阻礙兒童緩和照護的阻礙從兒科醫護人員的認知談起從兒科醫護人員的認知談起Barriers to Palliative Care for Children:Perceptions of Pediatric Health Care ProvidersPEDIATRICS 121:282-288,2008T.S.Ho2009/5/29l四分之三的兒童死亡發生在醫院四分之三的兒童死亡發生在醫院內內，且大部份在，且大部份在ICUICU。l美國小兒科醫學會美國小兒科醫學會(AAP,2000):(AAP,2000):整合性緩和照護模式整合性緩和照護模式Integrated palliative
2、care modelbeginning at diagnosis and emphasizing the provision of curative therapies and comfort measures to enhance the quality of life throughout the disease process.l 即使在美國，仍有許多瀕死病童即使在美國，仍有許多瀕死病童從未接受過緩和照護，甚至因此受從未接受過緩和照護，甚至因此受不必要的苦不必要的苦 (Institute of Medicine,(Institute of Medicine,2003)2003)提供適切兒
3、童緩和照護的障礙提供適切兒童緩和照護的障礙-1 Limited financial resources for specialized pediatric care(沒沒錢難辦事錢難辦事)Limited access to specialty care in rural areas(城鄉差距城鄉差距?)Communication problems(文化與習俗文化與習俗?)False hope for cure(醫學進步醫學進步?)Inappropriate continuation of use of advanced life-saving technology(葉克膜，呼吸器，移植葉克膜，
4、呼吸器，移植)提供適切兒童緩和照護的障礙提供適切兒童緩和照護的障礙-2 Ethical and legal issues(兩難兩難)Inappropriate eligibility criteria(誰需要誰需要?)Fragmented care(四不全四不全?)Inadequate assessment and management of symptoms(症狀處理的能力症狀處理的能力?)Lack of research on pediatric palliative care(個案還是整個案還是整體體?)Lack of training and expertise(誰來施誰來施/受訓受訓
5、?課程課程?)UCSF Childrens hospital Purpose of the study Describe barriers to end-of-life(EOL)care for children and their families,as perceived by pediatric health care providers at an academic childrens hospital in the western United States.近半數醫護人員都認定的障礙近半數醫護人員都認定的障礙 Uncertain prognosis(預後不明預後不明)(54.6%)
6、Family not ready to acknowledge incurable condition(怎怎麼可能治不好麼可能治不好?)(51.1%)Language barriers(語言語言，溝通，溝通，外籍父母外籍父母)(47.3%)Time constraints(忙，盲，茫忙，盲，茫)(47.1%)Uncertain prognosis(預後不明預後不明)較成人難估預後較成人難估預後 疾病多樣性，難以預測疾病多樣性，難以預測:Congenital abnormalities(先天畸形先天畸形)Chromosomal disorders(染色體異常染色體異常)Neurodegenera
7、tive disorders(神經退化性疾患神經退化性疾患)Malignancies(癌症癌症)易混淆治療目標易混淆治療目標(“cure vs.palliative care”)不斷的追求治癒，直到不斷的追求治癒，直到sure but late 遲來的心理社會支持與喘息遲來的心理社會支持與喘息(respite)服務服務如何克服如何克服”預後不明預後不明”Culture norm:not prepared for childhood death“Cure or Palliative”vs.“let me live the way I want to live,until I cant.”Inte
8、grate palliative and curative or life-prolonging care into a coherent whole:be patient,empower the parents Discuss palliative care with families in anticipation of critical illness,at diagnosis and during prenatal care,outpatient visits,or hospital admissions Professional education:effective communi
9、cation skills and the appropriate timing An uncertain prognosis should serve as a signal to initiate palliative care,rather than to avoid itFamily not ready to acknowledge incurable condition(何時能接受何時能接受?)父母對孩子的希望與夢想父母對孩子的希望與夢想 兒童重症兒童重症(life-threatening pediatric conditions)的常軌的常軌:Unexpected reversal
10、s and idiosyncratic responses to therapy(好好像有效像有效?)(Graham RJ,2005)Plateaus of relative stability(病情穩定了病情穩定了?)(Steele RG,2003)媒體上的媒體上的“醫療奇蹟醫療奇蹟”醫護人員認知醫護人員認知 vs.家長拒絕承認家長拒絕承認(denial)時間時間 vs.緊張關係緊張關係 Skilled communication and psychosocial support person 誠實，慈悲，不厭其煩誠實，慈悲，不厭其煩 vs.孩子的改變孩子的改變其他常見的障礙其他常見的障礙
11、Family preferences for more life-sustaining treatment,compared with those of staff members(讓他再多陪我們讓他再多陪我們下下)(40.6%)Staff shortages(人少難辦事人少難辦事)Cultural differences(文化差異文化差異)Lack of a palliative care consultation team(安寧共照團隊安寧共照團隊)其他常見的障礙其他常見的障礙 Insufficient knowledge of EOL pain management(疼痛疼痛控制控制)C
12、onflict among family members(家庭成員意見相左家庭成員意見相左)Conflict between staff members and family members about treatment goals(醫病之間醫病之間)Insufficient knowledge of palliative care(啥米是兒童緩和啥米是兒童緩和醫療醫療?)(31.0%).醫護之間似有不同醫護之間似有不同醫護之間似有不同醫護之間似有不同 兒童安寧緩和照護需要整個團隊密切合作兒童安寧緩和照護需要整個團隊密切合作 文化差異認知文化差異認知(culture differences)
13、醫生用講的醫生用講的:解釋診斷、預後、治療解釋診斷、預後、治療 護理用做的護理用做的:提供舒適、非言語、重視關係維護提供舒適、非言語、重視關係維護 治療計畫之衝突治療計畫之衝突(Conflict in treatment goal)Physicians responsible for presenting treatment options and shaping the goals of care 倫理委員會倫理委員會(lack of ethics committee)Critical care nurses often experience conflicts between their
14、personal and professional beliefs,parents desires,and physicians orders.單位特性也有影響單位特性也有影響不同兒科單位特性不同兒科單位特性ICU:ICU:較嚴格的護理人員較嚴格的護理人員/病床比病床比 (評鑑評鑑?)?)家長與家長與staffstaff較能接受預後不佳，停點滴較容易較能接受預後不佳，停點滴較容易?general ward:general ward:大夜只有兩個人大夜只有兩個人 (40(40床床)看到別人家小孩，難以接受停點滴看到別人家小孩，難以接受停點滴結語結語 兒童緩和醫療所面臨的障礙與成人不同兒童緩和醫療所面臨的障礙與成人不同 預後的不確定性預後的不確定性 是兒童緩和醫療的內在特性是兒童緩和醫療的內在特性 是開始緩和醫療的訊號而非阻礙是開始緩和醫療的訊號而非阻礙 學校課程學校課程(原則與溝通技巧原則與溝通技巧)醫謢人員訓練醫謢人員訓練(臨床敏感度與照護技能臨床敏感度與照護技能)醫療界文化的改變是必要的醫療界文化的改變是必要的 他山之石，可以攻錯他山之石，可以攻錯 成大醫院成大醫院 checklist
