新生儿生命末期决策中的不确定性和概率：分析重症新生儿的医护人员和家庭之间的实时对话。
Uncertainty and probability in neonatal end-of-life decision-making: analysing real-time conversations between healthcare professionals and families of critically ill newborns.
机构信息
Department of Neonatology, University Hospital Zurich, University of Zurich, Zurich, Switzerland.
Paediatric Palliative Care, University Children's Hospital Zurich, University of Zurich, Zurich, Switzerland.
出版信息
BMC Palliat Care. 2023 May 3;22(1):53. doi: 10.1186/s12904-023-01170-z.
BACKGROUND
A significant number of critically ill neonates face potentially adverse prognoses and outcomes, with some of them fulfilling the criteria for perinatal palliative care. When counselling parents about the critical health condition of their child, neonatal healthcare professionals require extensive skills and competencies in palliative care and communication. Thus, this study aimed to investigate the communication patterns and contents between neonatal healthcare professionals and parents of neonates with life-limiting or life-threatening conditions regarding options such as life-sustaining treatment and palliative care in the decision-making process.
METHODS
A qualitative approach to analysing audio-recorded conversations between neonatal team and parents. Eight critically ill neonates and a total of 16 conversations from two Swiss level III neonatal intensive care units were included.
RESULTS
Three main themes were identified: the weight of uncertainty in diagnosis and prognosis, the decision-making process, and palliative care. Uncertainty was observed to impede the discussion about all options of care, including palliative care. Regarding decision-making, neonatologists oftentimes conveyed to parents that this was a shared endeavour. However, parental preferences were not ascertained in the conversations analysed. In most cases, healthcare professionals were leading the discussion and parents expressed their opinion reactively to the information or options received. Only few couples proactively participated in decision-making. The continuation of therapy was often the preferred course of action of the healthcare team and the option of palliative care was not mentioned. However, once the option for palliative care was raised, the parents' wishes and needs regarding the end-of-life care of their child were obtained, respected, and implemented by the team.
CONCLUSION
Although shared decision-making was a familiar concept in Swiss neonatal intensive care units, parental involvement in the decision-making process illustrated a somewhat different and complex picture. Strict adherence to the concept of certainty might impede the process of decision-making, thereby not discussing palliation and missing opportunities to include parental values and preferences.
背景
大量危重新生儿面临潜在不良预后和结局，其中一些符合围产期姑息治疗的标准。当向父母告知其子女的危急健康状况时，新生儿保健专业人员需要在姑息治疗和沟通方面具备广泛的技能和能力。因此，本研究旨在调查新生儿保健专业人员与患有生命有限或生命受到威胁的新生儿的父母之间的沟通模式和内容，涉及在决策过程中有关维持生命的治疗和姑息治疗等选择。
方法
采用分析新生儿团队与父母之间录音对话的定性方法。纳入了来自瑞士 2 家三级新生儿重症监护病房的 8 名危重新生儿和总共 16 次对话。
结果
确定了 3 个主要主题：诊断和预后的不确定性、决策过程和姑息治疗。观察到不确定性阻碍了对所有护理选择（包括姑息治疗）的讨论。关于决策，新生儿科医生经常向父母表示，这是一项共同的努力。然而，在分析的对话中没有确定父母的偏好。在大多数情况下，医疗保健专业人员主导讨论，父母对收到的信息或选择做出反应性的表达。只有少数夫妇主动参与决策。治疗的延续通常是医疗团队的首选方案，姑息治疗的选择没有被提及。然而，一旦提出姑息治疗的选择，团队就会了解父母对其子女临终关怀的愿望和需求，并尊重和实施这些愿望和需求。
结论
尽管共同决策在瑞士新生儿重症监护病房是一个熟悉的概念，但父母在决策过程中的参与情况描绘了一个略有不同且复杂的情况。严格坚持确定性的概念可能会阻碍决策过程，从而不讨论姑息治疗，并错失纳入父母价值观和偏好的机会。
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