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。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2008~2012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,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8~12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已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,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。
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 describe 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 identified 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-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 weekends. 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 acceptable to families and caregivers.
关键词
舒缓治疗 /
临终关怀 /
新生儿
Key words
Palliative care /
End of life care /
Neonate
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参考文献
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