1、兒童緩和照護(hù)的阻礙從兒科醫(yī)護(hù)人員的認(rèn)知談起B(yǎng)arriers to Palliative Care for Children:Perceptions of Pediatric Health Care ProvidersPEDIATRICS 121:282-288,2008T. S. Ho2009/5/29兒童緩和照護(hù)的阻礙從兒科醫(yī)護(hù)人員的認(rèn)知談起B(yǎng)arrie四分之三的兒童死亡發(fā)生在醫(yī)院內(nèi)，且大部份在ICU。美國小兒科醫(yī)學(xué)會(AAP,2000): 整合性緩和照護(hù)模式Integrated palliative care modelbeginning at diagnosis and emphasiz

2、ing the provision of curative therapies and comfort measures to enhance the quality of life throughout the disease process. 即使在美國，仍有許多瀕死病童從未接受過緩和照護(hù)，甚至因此受不必要的苦 (Institute of Medicine, 2003)四分之三的兒童死亡發(fā)生在醫(yī)院內(nèi)，且大部份在ICU。提供適切兒童緩和照護(hù)的障礙- 1Limited financial resources for specialized pediatric care (沒錢難辦事)Limit

3、ed access to specialty care in rural areas (城鄉(xiāng)差距?)Communication problems (文化與習(xí)俗?)False hope for cure (醫(yī)學(xué)進(jìn)步?)Inappropriate continuation of use of advanced life-saving technology (葉克膜，呼吸器，移植)提供適切兒童緩和照護(hù)的障礙- 1Limited financ提供適切兒童緩和照護(hù)的障礙 - 2Ethical and legal issues (兩難)Inappropriate eligibility criteria

4、(誰需要?)Fragmented care (四不全?)Inadequate assessment and management of symptoms (癥狀處理的能力?)Lack of research on pediatric palliative care (個案還是整體?)Lack of training and expertise (誰來施/受訓(xùn)? 課程?) 提供適切兒童緩和照護(hù)的障礙 - 2Ethical and lUCSF Childrens hospitalUCSF Childrens hospital Purpose of the studyDescribe barrier

5、s 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. Purpose of the studyDescribe 兒童緩和照護(hù)的阻礙從兒科醫(yī)護(hù)人員的認(rèn)知談起B(yǎng)arriers-to-課件兒童緩和照護(hù)的阻礙從兒科醫(yī)護(hù)人員的認(rèn)知談起B(yǎng)arriers-to-課件兒童緩和照護(hù)的阻礙從兒科醫(yī)護(hù)人員的認(rèn)知談起B(yǎng)arrier

6、s-to-課件兒童緩和照護(hù)的阻礙從兒科醫(yī)護(hù)人員的認(rèn)知談起B(yǎng)arriers-to-課件近半數(shù)醫(yī)護(hù)人員都認(rèn)定的障礙Uncertain prognosis (預(yù)後不明) (54.6%)Family not ready to acknowledge incurable condition (怎麼可能治不好?) (51.1%)Language barriers (語言，溝通，外籍父母)(47.3%)Time constraints (忙，盲，茫) (47.1%)近半數(shù)醫(yī)護(hù)人員都認(rèn)定的障礙Uncertain prognosUncertain prognosis (預(yù)後不明)較成人難估預(yù)後疾病多樣性，難以預(yù)

7、測:Congenital abnormalities (先天畸形)Chromosomal disorders (染色體異常)Neurodegenerative disorders (神經(jīng)退化性疾患)Malignancies (癌癥)易混淆治療目標(biāo) (“cure vs. palliative care”)不斷的追求治癒，直到sure but late遲來的心理社會支持與喘息(respite)服務(wù)Uncertain prognosis (預(yù)後不明)較成人難如何克服”預(yù)後不明”Culture norm: not prepared for childhood death“Cure or Palliat

8、ive” vs. “l(fā)et me live the way I want to live, until I cant.”Integrate palliative and curative or life-prolonging care into a coherent whole: be patient, empower the parentsDiscuss palliative care with families in anticipation of critical illness, at diagnosis and during prenatal care, outpatient vis

9、its, or hospital admissionsProfessional education: effective communication skills and the appropriate timingAn uncertain prognosis should serve as a signal to initiate palliative care, rather than to avoid it如何克服”預(yù)後不明”Culture norm: not prFamily not ready to acknowledge incurable condition (何時能接受?)父母

10、對孩子的希望與夢想兒童重癥(life-threatening pediatric conditions)的常軌:Unexpected reversals and idiosyncratic responses to therapy (好像有效?) (Graham RJ, 2005)Plateaus of relative stability (病情穩(wěn)定了?) (Steele RG, 2003)媒體上的“醫(yī)療奇蹟”醫(yī)護(hù)人員認(rèn)知 vs. 家長拒絕承認(rèn)(denial)時間 vs. 緊張關(guān)係Skilled communication and psychosocial support person誠實，

11、慈悲，不厭其煩 vs. 孩子的改變Family not ready to acknowledg其他常見的障礙Family preferences for more life-sustaining treatment, compared with those of staff members (讓他再多陪我們下) (40.6%)Staff shortages (人少難辦事)Cultural differences (文化差異)Lack of a palliative care consultation team (安寧共照團(tuán)隊)其他常見的障礙Family preferences for 其他常見

12、的障礙Insufficient knowledge of EOL pain management (疼痛控制)Conflict among family members (家庭成員意見相左)Conflict between staff members and family members about treatment goals (醫(yī)病之間)Insufficient knowledge of palliative care (啥米是兒童緩和醫(yī)療?) (31.0%).其他常見的障礙Insufficient knowledge 醫(yī)護(hù)之間似有不同醫(yī)護(hù)之間似有不同醫(yī)護(hù)之間似有不同兒童安寧緩和照護(hù)需要

13、整個團(tuán)隊密切合作文化差異認(rèn)知 (culture differences)醫(yī)生用講的: 解釋診斷、預(yù)後、治療護(hù)理用做的: 提供舒適、非言語、重視關(guān)係維護(hù)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 (lack of ethics committee)Critical care nurses often experience conflicts between their personal and professional beliefs, parents desires, and physicians orders.醫(yī)護(hù)之間似有不同兒童安寧緩和照護(hù)需要整個團(tuán)隊密切合作單位特性也有影響單位特性也有影響不同兒科單位特性ICU: 較嚴(yán)格的護(hù)理人員/病床比 (評鑑?)家長與st