Spirituality and/or religious faith: A means for coping with the effects of amyotrophic lateral sclerosis/motor neuron disease?

Abstract

The notion of spirituality/religious belief is recognised internationally as a domain within end of life care and is important in patients' and carers' quality-of-life. When faced with incurable illness patients often become more philosophical about their life; many seek comfort in spiritual or religious philosophies. Our intention was to understand how personal spirituality and religious faith might help those living with ALS/MND to cope with their impending death. MethodsUnsolicited narratives (Internet and print-published) written by individuals diagnosed with the terminal condition ALS/MND were analysed thematically. Narratives from 161 individuals diagnosed with ALS/MND written over a period of 37 years from 1968-2005 were included. ResultsThe findings reveal that religious faith sustains and helps people to avoid despair; personal spirituality helps them make sense of what is happening to them. Significance of resultsThe use of personal narratives by people with ALS/MND has provided the vehicle for sharing their deepest spiritual and religious thoughts with others. The place of spirituality and religious faith within ALS/MND care should not be under estimated. Assessment of religious or spiritual needs should become a routine part of practice and is the responsibility of all members of the multidisciplinary team. KeywordsSpirituality, religious faith, motor neuron disease/amyotrophic lateral sclerosis, written narratives, coping INTRODUCTION:Motor neuron disease (MND), also known as amyotrophic lateral sclerosis (ALS) is a terminal neurodegenerative condition, often following a rapidly-progressive course leading to death 3-5 years from onset (Wood-Allum & Shaw, 2010). Management focuses on relieving distressing symptoms, but clear limitations exist as psychosocial effects frequently compound physical symptoms. When faced with a terminal illness, like ALS/MND, there is an inclination to question the meaning of life and death (Young & McNicoll, 1998;Oliver 2002;Grant et al., 2004); thoughts turn towards spirituality and faith for comfort and consolation (Oliver 2002); the importance of religion and spirituality in improving quality of life and decision making as death approaches is acknowledged (Delgado-Guay 2014).Spirituality is a domain of supportive and palliative care in national policies such as the UK End-of-Life Care Programme (DH 2008), quality-of-life (QOL) measures (WHO 1998), and ALS/MND-specific care recommendations (Mitsumoto et al., 2005). As a concept, spirituality does raise some issues for researchers and commentators. Some identify a 'spiritual turn' in palliative care where perceptions of patients' needs have come to focus on privatised and selfdefined meaning structures. Within clinical care this has involved a re-orientation away from explicitly religious engagement with patients and families towards acknowledgement of the wider spiritual concerns of users of palliative care services. In practice it can be difficult to categorise as 'religious' or 'spiritual' patients' concerns relating ...

The experiences of, and need for, palliative care for people with motor neurone disease and their informal caregivers: A qualitative systematic review

“…Ways of maintaining control included managing stress and protecting time for themselves, both as individuals and together. 21 , 47 , 49 , 57 Participants had varying attitudes to how they approached inevitable deterioration, with some wishing to plan ahead 8 , 20 , 22 , 28 , 29 , 34 , 35 , 39 , 40 , 48 , 54 , 56 , 57 and others preferring to live in the present and not consider the future. 22 – 25 , 28 , 31 , 33 – 35 , 39 , 40 , 50 , 51 , 56 , 57…”

“…As the disease progressed, both patients and carers tried to find ways to counteract feelings of loss and uncertainty, and to find new meaning in their life: 21 – 23 , 25 , 29 , 35 , 37 , 47 , 49 , 50 , 56 , 57…”

“…Some questioned what had caused the disease, although recognising there may be no clear cause: Ways of maintaining control included managing stress and protecting time for themselves, both as individuals and together. 21,47,49,57 Participants had varying attitudes to how they approached inevitable deterioration, with some wishing to plan ahead 8,20,22,28,29,34,35,39,40,48,54,56,57 and others preferring to live in the present and not consider the future. [22][23][24][25]28,31,[33][34][35]39,40,50,51,56,57 As the disease progressed, both patients and carers tried to find ways to counteract feelings of loss and uncertainty, and to find new meaning in their life: [21][22][23]25,29,35,37,47,49,50,56,57 Determination to do what I can for as long as I can, desire for independence [and a] resilient temperament.…”

“…Support also came from religious communities, other people with motor neurone disease and their carers. 21,25,28,29,34,39,47,50,53,57 Motor neurone disease support groups (both online and face-to-face) provided practical advice and helped people normalise their position; 25,33,47,49,57 however, some felt uncomfortable being in the company of people with more advanced disease or bereaved carers.…”

Rehabilitation bei Amyotropher Lateralsklerose

“…Depression ist wiederum mit Fatigue [76], und Depression und Angst sind mit verminderter Lebensqualität assoziiert, während Religiosität mit einer besseren Lebensqualität assoziiert ist [77]. Das Eruieren spiritueller und reli giöser Bedürfnisse ist erforderlich [78]. Bei ALSPatienten verschie ben sich die sinnstiftenden Lebensbereiche "vom Gesundheitszu stand hin zu supportiven Beziehungen, so dass ein sogenannter "response shift" zentral für die Krankheitsverarbeitung bei ALS zu sein scheint [79].…”