End-of-life decisions and advance care directives in motor neurone disease.

Background:The clinical management of Amyotrophic Lateral Sclerosis/Motor Neurone Disease(ALSIMND), is palliative from the time of diagnosis, and is focused on symptom control and adjustment to the progressive loss of neurological function with the certainty of early death. As treatments are limited, inevitable decisions regarding accepting of forgoing life-sustaining therapies should be made. The failure to address advance care planning and end-of-life decisions leads to unplanned interventions, particularly mechanical ventilation.

Aim: The aim of this study is to extrapolate and illuminate the lived experience for patients with ALSMND, their carers and their health-care professionals regarding end-of-life decisions and advance care directives and to identify if the experiences of the participants concur.

Methods: A qualitative hermeneutic approach, guided by the philosophy of Hans Georg Gadarner, was the chosen methodology for this study as it illuminates the meaning and understanding of the lived experience of contemplating end-of-life decisions and advance care directives for patients with ALSIMND, their carers and their healthcare professionals. Purposive sampling was used to identify participants for this study. All the participants had experience pertaining to the phenomenon under investigation and included patients with ALSIMND, their carers and their health-care professionals, including nurses, Palliative Care Consultants and Consultant Neurologists.

Results: The study identified the difficulties and complexities in initiating and discussing end-of-life issues for all involved. It highlighted the importance of family consensus and support throughout the disease trajectory. The study revealed that there was ambivalence regarding legalising advance care directives and that the participants had a preference for disease specific advance care directives. The study highlighted that in relation to revisiting end-of-life discussions the participants views did not concur. The health-care professionals expressed a wish to revisit end-of-life discussions periodically. However, the carers did not wish to revisit them fearing that the decisions made may be revoked. The study identified the need to improve communication between the various multidisciplinary teams. It highlighted the need to increase public information and awareness regarding end-of-life decisions and advance care directives whereby it does not have to be a sentinel event before these discussions take place. The study identified that referral to the ALSIMND clinic would result in timely and appropriate end-of-life discussions and advance care directives taking place. It identified that patients who wish to invoke an advance care directive and have their end-of-life wishes respected are completely dependent on the attending physician.

Conclusions: The discussion of end-of-life issues and advance care directives appears to be fraught with difficult challenges. The potential for conflict may lead health-care professionals to avoid open discussions and advance care planning. End-of-life decisions and advance care directives are an extremely important process that emerges in the context of the patient, carer and health-care professional relationship. This study has identified that the use of advance care directives cannot promise or guarantee patients with Amyotrophic Lateral Sclerosis/Motor Neurone Disease a say in their end-of-life care.