Palliative care for patients with motor neurone disease and their bereaved carers: a qualitative study

Alison Dick,Colette Donaghy,Max Watson,Kiran Kaur,Briege Mc Laughlin,John Mc Conville,Clare Mc Veigh

doi:10.1186/s12904-019-0423-8

Abstract

BackgroundInternationally, it is widely accepted that holistic care is as an integral part of the care for people with motor neurone disease (MND), and their informal carers. However the optimal role of generalist and specialist palliative care, and how it integrates with specialist neurology services, is not fully established. Using a qualitative approach we sought to examine end of life care for people with MND in Northern Ireland, and the role of specialist and generalist palliative care.MethodsQualitative study involving a convenience sample of 13 bereaved carers recruited using the Northern Ireland MND Register. Data collection consisted of semi-structured interviews with the bereaved carers of patients who had died 3–24 months previously with a diagnosis of MND. Data were analysed using thematic analysis.ResultsFindings illuminated variations in relation to the levels of holistic care provided to this cohort of patients. Unmanaged respiratory and psychological symptoms caused perceived distress amongst patients. Participants’ experiences additionally highlighted reluctance amongst patients with MND to engage with services such as specialist palliative care. Conversely, for those who received input from specialist palliative care services carers portrayed these services to be of great benefit to the patient.ConclusionsPatients with MND in Northern Ireland may have many unmet holistic care needs. Key areas that require particular focus in terms of service development include neuromuscular respiratory physiotherapy and psychological services for patients. Future research must explore an optimal model of holistic care delivery for patients with MND and how this can be effectively integrated to best meet this patient cohorts palliative care needs.

Highlights

It is widely accepted that holistic care is as an integral part of the care for people with motor neurone disease (MND), and their informal carers
Motor Neurone Disease (MND) is a progressive, neurodegenerative disease characterised by degeneration of the upper and lower motor neurones resulting in weakness and wasting of muscles
Observational studies conducted in Ireland [4, 5], America [6] and the Netherlands [7] have provided some evidence that specialist multidisciplinary clinics positively impact upon survival and quality of life in MND, specialist palliative care was not a core part of the multidisciplinary teams examined

Summary

Introduction

It is widely accepted that holistic care is as an integral part of the care for people with motor neurone disease (MND), and their informal carers. Using a qualitative approach we sought to examine end of life care for people with MND in Northern Ireland, and the role of specialist and generalist palliative care. Motor Neurone Disease (MND) is a progressive, neurodegenerative disease characterised by degeneration of the upper and lower motor neurones resulting in weakness and wasting of muscles. This typically leads to loss of mobility as well as difficulties with speech, swallowing and breathing, with survival generally between 3 and 5 years [1].

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Discussion

Conclusion