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 Eenennaam; Neele Rave; Willeke J Kruithof; Esther T Kruitwagen-van Reenen; Leonard H van den Berg; Johanna A Visser-Meily; Anita Beelen

doi:10.1371/journal.pone.0290508

Control in the absence of choice: A qualitative study on decision-making about gastrostomy in people with amyotrophic lateral sclerosis, caregivers, and healthcare professionals

PLoS One. 2023 Sep 8;18(9):e0290508. doi: 10.1371/journal.pone.0290508. eCollection 2023.

Authors

Remko M van Eenennaam^{1

2}, Neele Rave^{1

2}, Willeke J Kruithof^{1

2}, Esther T Kruitwagen-van Reenen^{1

2}, Leonard H van den Berg³, Johanna A Visser-Meily^{1

2}, Anita Beelen^{1

2}

Affiliations

¹ Department of Rehabilitation, Physical Therapy Science and Sports, UMC Utrecht Brain Center, University Medical Center Utrecht, Utrecht, The Netherlands.
² Center of Excellence for Rehabilitation Medicine, UMC Utrecht Brain Center, University Medical Center Utrecht and De Hoogstraat Rehabilitation, Utrecht, The Netherlands.
³ Department of Neurology, UMC Utrecht Brain Center, University Medical Center Utrecht, Utrecht, The Netherlands.

Abstract

Background: 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.

Method: 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.

Results: 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.

Conclusion: 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.

Copyright: © 2023 van Eenennaam et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

Publication types

Research Support, Non-U.S. Gov't

MeSH terms

Amyotrophic Lateral Sclerosis* / therapy
Caregivers*
Delivery of Health Care
Gastrostomy
Health Personnel
Humans

Grants and funding

This study was funded by The Netherlands ALS foundation (No. 2016–51): https://www.als.nl/. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.