Control in the absence of choice: A qualitative study on decision-making about gastrostomy in people with amyotrophic lateral sclerosis, caregivers, and healthcare professionals.
Remko M van EenennaamNeele RaveWilleke J KruithofEsther T Kruitwagen-van ReenenLeonard H van den BergJohanna A Visser-MeilyAnita BeelenPublished in: PloS one (2023)
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.