The factors affecting end-of-life decision-making by physicians of patients with intellectual disabilities in the Netherlands: a qualitative study
The factors affecting end-of-life decision-making by physicians of patients with intellectual disabilities in the Netherlands: a qualitative study
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DOI：
10.1111/j.1365-2788.2012.01550.x
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发表时间：
2013-04-01
影响因子：
3.6
通讯作者：
Curfs, L.
中科院分区：
文献类型：
--
作者：
Wagemans, A.;Lantman-de Valk, H. van Schrojenstein;Curfs, L.
背景本研究的目的是从医生的角度调查荷兰智力残疾（ID）患者的临终决策过程。方法本定性研究涉及9个半结构化的采访ID医生在荷兰的ID患者死亡后，涉及结束生命的决定。访谈被逐字转录，并使用扎根理论程序进行分析。结果影响医生决策过程的主要因素有4个，其中3个与亲属意愿和意见的重要性有关：（1）亲属参与决策。由于医生认为病人缺乏能力，因此非常重视亲属的意见和愿望，并倾向于遵循这些愿望。(2)将生活质量评估委托给亲属。医生根据他们的医学评估来证明他们的临终决定是合理的，但把对患者生活质量的评估留给了亲属，尽管他们对生活质量有自己的隐含意见。(3)良好的工作关系。医生寻求与亲属和有偿护理人员达成共识，往往更重视良好的工作关系的重要性，而不是他们自己对患者最佳利益的评估。(4)了解病人的弱点。医生利用他们对患者脆弱健康状况的亲密、长期了解。结论为了采取更平衡的决策，医生应该寻求可能性，涉及ID患者自己和其他利益相关者，这是重要的病人。长期了解患者的医生应该更多地依靠自己对患者需求和偏好的了解，寻求他人的意见，并在决策过程中公开发挥主导作用。
Background The aim of this study was to investigate the process of end-of-life decision-making regarding people with intellectual disabilities (ID) in the Netherlands, from the perspective of physicians. Methods This qualitative study involved nine semi-structured interviews with ID physicians in the Netherlands after the deaths of patients with ID that involved end-of-life decisions. The interviews were transcribed verbatim and analysed using Grounded Theory procedures. Results Four main contributory factors to the physicians decision-making process were identified, three of which are related to the importance of relatives' wishes and opinions: (1) Involving relatives in decision-making. As they had assessed their patients as lacking capacity, the physicians gave very great weight to the opinions and wishes of the relatives and tended to follow these wishes. (2) Delegating quality of life assessments to relatives. Physicians justified their end-of-life decisions based on their medical assessment, but left the assessment of the patients' quality of life to relatives, despite having their own implicit opinion about quality of life. (3) Good working relationships. Physicians sought consensus with relatives and paid care staff, often giving greater weight to the importance of good working relationships than to their own assessment of the patient's best interest. (4) Knowledge of the patient's vulnerabilities. Physicians used their intimate, long-standing knowledge of the patient's fragile health. Conclusions In order to take a more balanced decision, physicians should seek possibilities to involve patients with ID themselves and other stakeholders which are important for the patients. Physicians who have known the patient over time should rely more on their own knowledge of the patient's needs and preferences, seek the input of others, and openly take the lead in the decision-making process.