加拿大三级医疗中心新生儿的临终关怀_英文_KoravangattuSankara.docx

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1、第 18卷第 5期 2016 年 5 月 中国当代儿科杂志 Chin J Contemp Pediatr Voll8No.5 May 2016 doi:10.7499/jissn.l008-8830.2016.05.001 国外儿科研究 OVERSEASPED ATRIC RESEARCH Neonatal end of life care in a tertiary care centre in Canada: a brief report Koravangattu Sankaran, Erin Hedin, Heather Hodgson-Viden (Division of Neonat

2、ology, Department of Pediatrics, College of Medicine， University of Saskatchewan, Saskatoon, Canada) Abstract: Objective To describe the processes followed by a neonatal team engaging parents with respect to end of life care of babies in whom long term survival was negligible or impossible; and to d

3、escribe feedback from these parents after death of their child. Methods A retrospective review was conducted of health records of neonates who had died receiving palliative care over a period of 5 years at a tertiary neonatal centre. Specific inclusion criteria were determined in advance that identi

4、fied care given by a dedicated group of caregivers. Results Thirty infants met eligibility criteria. After excluding one outlier an average of 4 discussions occurred with families before an end of life decision was arrived at. Switching from aggressive care to comfort care was a more common decision

5、-making route than having palliative care from the outset. Ninety per cent of families indicated satisfaction with the decision making process at follow-up and more than half of them returned later to meet with the NICU team. Some concerns were expressed about the availability of neonatologists at w

6、eekends. Conclusions A compassionate and humane approach to the family with honesty and empathy creates a positive environment for decision-making. An available, experienced team willing to engage families repeatedly is beneficial. Initiating intensive care with subsequent palliative care is accepta

7、ble to families and caregivers. Chin J Contemp Pediatr, 2016,18(5): 379-385 Key words: Palliative care; End of life care; Neonate 加拿大二级医疗中心新生儿的临终关怀 Koravangattu Sankaran, Erin He din, Heather Hodgson-Viden. Division of Neonatology, Department of Pediatrics, College of Medicine, University of Saskatc

8、hewan, Saskatoon, Canada 中文概要：当今新生儿的存活率在不断提高，危重症的诊断准确性也较以往有明显改善。但当新生儿基本 或完全治疗无望时，其诊疗重心应由积极监护治疗转为临终关怀舒缓治疗 。医疗团队需尽早与家长进行多方面 沟通，以便对临终关怀达成共识。在某些情况下，一味地延长生命反而会增加患儿的痛苦，并导致家长怀有不 切实际的期望。 目前国际上临终关怀的相关指南存在一些漏洞且较为空泛，缺乏可操作性，不同医院的实践之间也存在很 大差异。很多研究指出新生儿临终关怀实践中，患儿家属、医疗团队、社工以及医院伦理委员会的参与度不足， 对多方的意见不够重视，较难在很多问题上达成共识。

9、未来的新生儿临终关怀应当更加注重多方共同决策，尤 其提高患儿家长的参与度，并且避免简单地根据胎龄而做出是否临终关怀的决定。 本研究由加拿大萨斯喀彻温大学伦理委员会审核批准，对萨斯喀彻温大学医学院儿科学系新生儿重症监护 病房20082012 年 5 年时间内接受临终关怀并最终离世的新生儿的相关病历资料进行了回顾分析，也纳入同时 期内围产期死亡及婴儿期死亡的临终关怀病例。萨斯喀彻温大学皇家大学医院新生儿科的临终关怀指南在上世 纪 90 年代初制定，并在 2000 年修订，主要包括以下内容： （ 1)客观评估并确认患儿的诊断，判断其疾患是否 属于基本或完全治疗无望（如 IV 级脑室内出血、不可逆的多

10、器官功能衰竭、极难存活的极早早产儿、严重且不 可逆的脑损伤、多发的严重先天畸形、罕见的遗传代谢疾病以及染色体疾病等 ） 。 （ 2)高年资新生儿科医师审 核诊断，并评估临终关怀是否恰当。（ 3)在确认后，第一时间与患儿家属沟通临终关怀的相关情况。 （ 4)患 儿的主治医生与床旁护士一同正式地与家属交流讨论，并解释病情。第一次交流主要侧重于患儿当前的情况， Received January 21, 2016； Accepted February 26, 2016 Biography of the first author Dr. Koravangattu Sankaran: Professor

11、of Department of Pediatrics, College of Medicine, University of Saskatchewan (Email: k.sankaranusask.ca). 379. 第 18卷第 5期 2016 年 5 月 中国当代儿科杂志 Chin J Contemp Pediatr Voll8No.5 May 2016 强调目前的重症监护并未对患儿有任何帮助，并告诉家属他们可能的选择有哪些。在第一次交流时，与家属预 约好第二次交流的时间。 （ 5)及时开具医嘱并记录病程。 （ 6)邀请新生儿父母或长辈所信仰宗教的高级神职 人员参与讨论。 在患儿离世后

12、 812 周内，邀请患儿家属回医院参加半结构式访谈，由新生儿科医师解答家属的疑惑和问题。 并在访谈结束时，询问家属对医院相关工作是否有意见或建议。一名临终关怀专职联络护士将跟进安排后续的 回访会议，并提供丧葬服务帮助。其他服务还包括一个回访电话和一次家访，如有需要还可帮 助预约医院教堂 及祷告仪式。如果患儿的母亲是单亲妈妈，如果妈妈愿意，祖父母也会被邀请。联络护士会全程记录下相关的 交流会议、回访及反馈的情况，并与新生儿科医师共享这些信息。 共 40 名婴儿纳入本研究，其中 30 名符合入组条件（男性 16 名，女性 14 名），胎龄最小的为 22 周，最大 的为 41 周。结果 80%纳入本

13、研究的病例，临终关怀是由医疗团队在与家属的沟通中主动提出。此外由医患双 方共同考虑并提出的占 17%，仅 1 位患儿（ 3% )的临终关怀是由家属提出。本研究观察到整个临终关怀的过程中， 需要医患双方的沟通会议从 1 次到 30 次不等，平均每个病例需要 7 次沟通。排除一个需要 30 次沟通的特殊案例， 每个病例临终关怀的平均沟通会议次数为 4 次。这个数据此前并未有报道过，有重要的参考意义，可以指导未 来的人力资源配置以及新指南的编写。总的来说，单亲、原住民以及天主教家长所需要的沟通次数是其他家长 的两倍左右。不同种族和宗教信仰的家庭，在处理临终关怀上也不尽相同。这显示了种族、民族以及宗教

14、信仰 在临终关怀问题上的敏感性，需要谨慎处理。在未来临终关怀的教育中，应当设立针对不同文化背景的特殊培训。 本研究中大部分接受临终关怀的新生儿患有多发 的先天畸形或罕见的遗传代谢疾病。由于出色的产前筛查 系统，会诊咨询团队很多时候在产前就己经与家属开始交流沟通了。这样的咨询团队由新生儿科医师、遗传学 医师、临终关怀专家、小儿心脏内科医师以及社工等多专业背景的优秀成员共同组成。在常规的会诊制度外， 有针对性的继续教育培训，并开展常规的围产医学查房也十分有帮助。本研究中 37%的病例是在产前就已经和 家属充分沟通，患儿自出生开始就直接接受了临终关怀。 57%的患儿最后在新生儿科或儿科重症监护室离世

15、， 30%的孩子在产房离世， 10%的孩子在家中离世。家 长们都十分关心临终关怀的孩子是否会受到病痛的煎熬，我们通常都尽早开始舒缓治疗，可静脉使用吗啡或芬 太尼，或口服选用对乙酰氨基酚或水合氯醛。 50%的家庭通过联络护士安排了丧葬事宜，所有的家属在回访中均对临终关怀专职联络护士给予的帮助表 示感谢。绝大部分家属对在院内临终关怀的相关流程表示满意，占总受访家庭数的 90%，他们中很多人带着礼 物回访了新生儿病房。 10%的家庭认为我们目前的临终关怀工作可以做得更好，比如有的家长认为在周末休息 时间与医师的交流不如工作日方便。我们在收到这项建议后，马上就进行了改正安排。 富有同情心的专职联络 护

16、士对临终关怀工作的开展至关重要。她（他）可以确保医患间沟通渠道的高效畅通，可以解答家属的基本问题， 可以跟进进一步的检验或检查，提供丧葬服务的帮助，并且接受家属对临终关怀的反馈。另外需要特别指出的是， 每个家庭都对在临终关怀期间可以有一个私密的病房空间表示感谢。优质的临终关怀不仅需要人力资源的投入， 也需要病房有足够的物理空间。 本研究小组认为本中心的临终关怀工作流程注重细节且高效，但我们的经验来自西方文化体系，是一项回 顾性的单中心研究，并不一定适合全球其他地区。 关键词 舒缓治 疗；临终关怀；新生儿 Introduction While more children die around t

17、he time of birth than at any other age, advances in fetal medicine and neonatology have improved the diagnostic accuracy of neonatal life-threatening conditions, and in many cases, have resulted in increased survival. For those cases where death is unavoidable and imminent, there is an urgent need t

18、o initiate discussion with families in order to formulate a consensus on end of life care. This consensus should encompass the ethic questions, processes and procedures that will be encountered. There is increasing awareness of the need for (摘译：姚跃） guidance surrounding the decision to either initiat

19、e care and treatment with palliative intent or to begin with intensive care followed by transition to palliative care12. In the modern era of neonatal intensive care it is quite possible to prolong life using advanced technologies in situations where death is both imminent and eventually unavoidable

20、. In such cases prolongation of life may increase pain and suffering for the child and often creates unreasonable hope and expectations for parents and families. Since the process of death in neonates is increasingly related to the decision when to initiate palliative care rather than failure of med

21、ical therapy, there is a need for increased 380. 第 18卷第 5期 2016 年 5 月 中国当代儿科杂志 Chin J Contemp Pediatr Voll8No.5 May 2016 awareness and attention from caregivers to the ethical principles that guide such decisions. Medical staff must strive for effective relationships with parents and the establishme

22、nt of trust in order to guide parents through these difficult times34. As such, this topic requires well-defined policies and procedures derived from consensus, ensuring that all components of excellent palliative care are included, thus improving the experience for families and caregivers. The Neth

23、erlands and United Kingdom have adopted general guidelines for palliative care5 6. For the most part they are non-specific, lack details, and have been heavily criticized7 for being too vague. It has also been suggested that they ignore important prognostic factors such as timing of death and detail

24、s of diagnosis, and on rare occasions, cases ending in unexpected prolonged survival. In North America the neonatal end of life care practices vary between institutions1891. A 2014 study from Saskatchewan and Manitoba found that there were variations in the end of life processes and protocols betwee

25、n the 3 sites studied and that none of the sites had every element of what has been described in the literature as ideal4. Another report from Canada highlights the challenges that face physician trainees10. The challenges faced by all neonatal caregivers emphasized the need for participation and in

26、put from several key parties such as family members, medical teams, social workers, and ethics boards. An important part of this goal is to evaluate the parents? experiences in order to include their values in the consensus. It has been suggested that parents experience less guilt when the physician

27、 starts the discussion on when to initiate palliative care11. It has also been found that parents with a higher educational status are able to come to a decision on the matter more quickly11. A cross sectional survey among US neonatologists and trainees revealed that perspectives of palliative care

28、and end of life care are important and that exploration of differing values is needed12 13. A review of literature revealed that development of consensus was difficult, suggesting that more research and models are needed which emphasize shared decision-making , avoiding acting on labels derived from

29、 gestational age categories alone along with improved competency, knowledge and confidence112171. Recently, experts in palliative care treatment have been involved in the end of life care of neonates18. While more and more preterm infants at the margin of extreme prematurity survive, Janvier et al19

30、 have reminded us of the need for advanced ethical knowledge and sound decisionmaking. As a preliminary step towards the goal of developing a national widely consultative and approved guideline we felt it was timely to report our experience. We also believed that our experiences and results obtained

31、 from our study may help other hospitals and neonatal care staff. Methods Ethical approval was obtained from the University of Saskatchewan Biomedical Research Ethics Board. A retrospective review was conducted of the health records of neonates who died within a 5-year period (2008-2012). Study elig

32、ibility included all perinatal, neonatal and infant deaths; the author (Koravangattu Sankaran) was involved in the care and discussion with family; palliative care was offered; follow-up information was available; and in the absence of pediatric palliative care consultant, a neonatologist offered pa

33、lliative care. The Division of Neonatology at Royal University Hospital in Saskatoon SK follows local, consensus- developed processes and procedures for neonatal end of life care (1990 reviewed in 2000), which included the following: (1) Objective confirmation of diagnosis of a condition where intac

34、t survival is negligible or impossible (for example, severe grade IV intraventricular hemorrhage, irreversible multi-organ failure, prematurity at the margin of survival, severe irreversible brain damage, multiple severe congenital anomalies, genetic, metabolic, and chromosomal disorders). 381. 第 18

35、卷第 5期 2016 年 5 月 中国当代儿科杂志 Chin J Contemp Pediatr Voll8No.5 May 2016 (2) Initiation of end of life care discussion with the family following confirmation of diagnosis. (3) The attending neonatologist, along with the neonatal nurse caring for the infant, meet with the parents formally and explain the

36、situation. The first meeting focuses on explaining the condition of the infant, futility of further intensive care, and the options for the family. Further meetings are scheduled as and when requested by both parties until the final decision is reached. (4) A senior neonatologist is consulted in ord

37、er to review the diagnosis and confirm the decision. (5) Appropriate orders and detailed progress notes are written in the chart as and when necessary. (6) Senior clergy from the religion of the infants parents and or elders in the family are included in the discussions. For all infants included in

38、the study families were contacted 8 to 12 weeks after death for a face-to- face semi-structured interview where the neonatologist responded to the parents/families concerns and questions. On exit they were asked to offer a critique and opinion about the process, procedures and care provided by staff

39、 and on overall hospital stay. A liaison nurse, who is an expert in family relations, arranged the follow up meetings, offered bereavement services as necessary and attended the meetings along with the neonatologist. The bereavement services included, a follow up phone conversation, a home visit if

40、necessary and arrangement of hospital chapel visit and prayer with hospital staff and family in selected cases. In cases with a single mother, a grandparent from the maternal or paternal side was asked join in on the discussion with mothers consent. After the joint meeting, the liaison nurse met wit

41、h the family to document feedback, wrote down salient points, and then shared this information with the neonatologist. Verbal consent was obtained prior to collecting feedback. The primary author collated that data for this study. A clinical data sheet was prepared and reviewed with the following in

42、formation: final diagnosis; initiator of end of life discussion (family member, staff, or both); number of discussions held; final decision (initiate palliative care, switch from intensive to palliative care or other); where death occurred; palliative care details; and follow-up data. Descriptive st

43、atistics were used to explain the study results where applicable. There were 40 infants who died of all causes during the time period. Thirty infants met inclusion criteria (16 males and 14 females). Gestational age at birth ranged from 22 to 41 weeks. Results Final diagnosis Eleven (37%) out of 30

44、were diagnosed with genetic and metabolic disorders (including severe congenital lactic acidosis, severe non-ketotic hyperglycenemia, severe harlequin ichthyosis, alpha thalassemia, severe hyperammonemia and severe hepatic cytochrome deficiency). Eight (27%) out of 30 suffered severe asphyxia with i

45、rreversible brain damage and multi-organ failure (MOF), 7 (23%) were diagnosed with extreme prematurity with intraventricular hemorrhage and MOF, and 4 (13%) with severe lethal congenital anomalies and chromosomal disorders (including Pena-Shokeir syndrome, Wolfe-Hirschon syndrome with multiple cong

46、enital heart defects, Ives-Houston syndrome, Meckel-Gruber syndrome, CHARGE association with congenital heart disease, trisomy 21 with severe necrotizing enterocolitis, multi-organ failure and congenital heart disease, trisomy 13 and trisomy 18). Initiation of end of life discussion In 24 (80%) out

47、of 30 cases the physician or staff team member initiated the discussion. One (3%) discussion was family-initiated, and in 5 (17%) cases, both family and physician started the conversation for compassionate care around the same time. Number of discussions held The mean number of discussions needed pe

48、r case was 7, with a range from 1 to 30. However, one 382. 第 18卷第 5期 2016 年 5 月 中国当代儿科杂志 Chin J Contemp Pediatr Voll8No.5 May 2016 case had 30 discussions, which was atypical and never actually resulted in a final decision. When the outlier was excluded from the analysis, a mean of 4 discussions wer

49、e required to achieve consensus. In some cases the discussions were started prenatally. In general, single, first Nation and Catholic parents needed about twice as many discussions compared to other groups prior to reaching a final decision. Final decision In 18 (60%) out of 30 of cases the decision was made to switch to palliative care after intensive care had already begun. Of the remaining cases, 11 (37%) resulted in a decision to only initiate palliative