Department of Rehabilitation, Physical Therapy Science and Sports, UMC Utrecht Brain Center, University Medical Center Utrecht, Utrecht, The Netherlands.
Center of Excellence for Rehabilitation Medicine, UMC Utrecht Brain Center, University Medical Center Utrecht and De Hoogstraat Rehabilitation, Utrecht, The Netherlands.
PLoS One. 2023 Sep 8;18(9):e0290508. doi: 10.1371/journal.pone.0290508. eCollection 2023.
Gastrostomy is recommended in amyotrophic lateral sclerosis for long-term nutritional support, however, people with amyotrophic lateral sclerosis and healthcare professionals perceive decision-making as complex.
To explore their perspectives on decision-making regarding gastrostomy, we used semi-structured interviews with people with amyotrophic lateral sclerosis, who had made a decision, and their caregivers; healthcare professionals were interviewed separately. Interviews were transcribed and analyzed thematically.
In 14 cases, 13 people with amyotrophic lateral sclerosis and 12 caregivers were interviewed; and in 10 of these cases, 5 healthcare professionals. Participants described decision-making on gastrostomy as a continuous process of weighing (future) clinical need against their values and beliefs in coming to a decision to accept or reject gastrostomy, or to postpone decision-making, while being supported by loved ones and healthcare professionals. Participants described gastrostomy as inevitable, but retained agency through control over the timing of decision-making. They said physical necessity, experiences of loss and identity, and expectations about gastrostomy placement were important factors in decision-making. Decision-making was described as a family affair, with caregivers supporting patient choice. healthcare professionals supported people with amyotrophic lateral sclerosis during the decision-making process and respected their autonomy and values. People with amyotrophic lateral sclerosis stressed the importance of adequate information on the procedure and the benefits.
People with amyotrophic lateral sclerosis feel in control of decision-making on gastrostomy if they are able to make their own choice at their own pace, supported by loved ones and healthcare professionals. Person-centered decision-making on gastrostomy requires early information exchange and repeated discussions with people with amyotrophic lateral sclerosis and their caregivers, incorporating their values and respecting patient choice.
胃造口术被推荐用于肌萎缩侧索硬化症的长期营养支持，但肌萎缩侧索硬化症患者和医疗保健专业人员认为决策很复杂。
为了探讨他们对胃造口术决策的看法，我们对已经做出决策的肌萎缩侧索硬化症患者及其照顾者进行了半结构化访谈；另外还对医疗保健专业人员进行了访谈。访谈内容被转录并进行了主题分析。
在 14 例中，对 13 名肌萎缩侧索硬化症患者和 12 名照顾者进行了访谈；其中 5 例有医疗保健专业人员参与。参与者描述胃造口术决策是一个权衡（未来）临床需求与他们的价值观和信念的连续过程，以决定接受或拒绝胃造口术，或推迟决策，同时得到亲人的支持和医疗保健专业人员的支持。参与者描述胃造口术是不可避免的，但通过控制决策的时机保留了自主权。他们说身体的必要性、丧失和身份的体验，以及对胃造口术放置的期望是决策的重要因素。决策被描述为家庭事务，照顾者支持患者的选择。医疗保健专业人员在决策过程中支持肌萎缩侧索硬化症患者，并尊重他们的自主权和价值观。肌萎缩侧索硬化症患者强调了获得有关该程序及其益处的充足信息的重要性。
如果得到亲人的支持，并能按照自己的节奏做出自己的选择，肌萎缩侧索硬化症患者会感到对胃造口术决策有控制感。胃造口术的以患者为中心的决策需要早期信息交换，并与肌萎缩侧索硬化症患者及其照顾者反复讨论，纳入他们的价值观并尊重患者的选择。
