Decision Making About Gastrostomy and Noninvasive Ventilation in Amyotrophic Lateral Sclerosis.
We used thematic analysis to investigate factors affecting decision making about gastrostomy and noninvasive ventilation (NIV) by people with Amyotrophic Lateral Sclerosis (ALS) from the viewpoint of the health care professionals (HCPs) supporting them. We conducted 20 in-depth interviews with 19 HCPs nominated by people with ALS who had made a decision to accept or decline NIV or gastrostomy. We found the main themes influencing decision making were patient-centric, caregiver-related or related to HCPs' own beliefs, perspectives, and actions. HCPs felt patients should be, and were, in control of decision making, although caregivers and HCPs played a role. The patient's evaluation of quality of life, the desirability of prolonging life, and acceptance of the disease and its progression by both patient and caregiver were the most important factors identified by HCPs. HCPs should be aware of the importance of multiprofessional discussions, and the potential influences (identified above) that might require discussion with patients and caregivers.
King's College London, United Kingdom.
Naomi H
NH
Martin
King's College London, United Kingdom.
Vanessa
V
Lawrence
King's College London, United Kingdom.
Joanna
J
Murray
St. Thomas' Hospital, London, United Kingdom.
Anna
A
Janssen
King's College London, United Kingdom.
Irene
I
Higginson
King's College Hospital NHS Foundation Trust, London, United Kingdom.
Rebecca
R
Lyall
King's College London, United Kingdom.
Rachel
R
Burman
University of Sussex, Brighton, United Kingdom.
P Nigel
PN
Leigh
King's College London, United Kingdom.
Ammar
A
Al-Chalabi
King's College London, United Kingdom laura.goldstein@kcl.ac.uk.
Laura H
LH
Goldstein
D000690:Amyotrophic Lateral Sclerosis / Q000628:therapy*; D003657:Decision Making; D005774:Gastrostomy; D006801:Humans; D063087:Noninvasive Ventilation; D011788:Quality of Life
South-East England; decision making; health care professionals; health care, users’ experiences; illness and disease, life threatening / terminal; neurology; palliative care; qualitative analysis; thematic analysis