Discussing treatment options and desires with patients with amyotrophic lateral sclerosis

Background: Guidelines describe the importance of Advance Care Planning (ACP) in patients with Amyotrophic Lateral Sclerosis. It is unclear how patients and caregivers experience ACP discussions. This study aims to investigate patients9 and caregivers experiences and needs. Method: Qualitative case-study design with semi-structured individual interviews with 5 patients and 6 caregivers and a focus group interview with 6 caregivers conducted at the Home Mechanical Ventilation Center Groningen. Data was transcribed and analyzed thematically by open, axial and selective coding. Results: Themes identified by patients included: need for overview in information, contact with care staff and influencing self-direction. Patients desired overview in treatment options. A relationship of trust with care staff was not always present. Family circumstances influenced self-direction. Themes identified by caregivers were: ambiguous information, searching for the right timing, shared decision making and perceived dilemmas. Caregivers had different points of view on what should be discussed and when, and desired written support. Varying coping among patients made the timing of discussions difficult, patient expectations were not always questioned. Experience in caring for patients with ALS created dilemmas due to changing views on quality of life. Data triangulation, member check and peer review enhanced validity. Conclusion: Tailor-made care can be improved by clarifying expectations about content of ACP conversations. Overview of treatment options will increase patient self-direction. Experienced dilemmas among caregivers call for moral deliberation.