145 Implementing edinburgh cognitive and behavioural als screen (ecas) in palliative care in patients with motor neurone disease (mnd) – experience from phyllis tuckwell hospice care (pthc)

The concepts of hope and its absence, hopelessness, are seen as crucial in palliative care for people with motor neurone disease. A primary measure in psychological research on hopelessness in people with motor neurone disease is the Beck Hopelessness Scale. This scale can be understood as being conceptually based on the philosophical standard account of hope, which understands hope as an intentional expectancy. This essay argues that this is a misconstruction of hopelessness in palliative care. Rather, pre-intentional hope is essential for palliative care of people with motor neurone disease. Pre-intentional hope enables the formation of intentional hopes and is intrinsically relational. Finally, it is argued that the absence of pre-intentional hope should not be subjected to psychiatric diagnosis, for example, in the form of demoralization disorder.

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Experiences of dying, death and bereavement in motor neurone disease: A qualitative study

Palliative Medicine ◽

10.1177/0269216311410900 ◽

2011 ◽

Vol 26 (4) ◽

pp. 368-378 ◽

Cited By ~ 44

Author(s):

Bridget Whitehead ◽

Mary R O’Brien ◽

Barbara A Jack ◽

Douglas Mitchell

Keyword(s):

Palliative Care ◽

Qualitative Study ◽

Health Professionals ◽

Motor Neurone ◽

Motor Neurone Disease ◽

Care Planning ◽

Family Carers ◽

Care Services ◽

Palliative Care Services ◽

Advance Care

Objectives: to explore the experiences of people with Motor Neurone Disease (MND), current and bereaved carers in the final stages of the disease and bereavement period. Methods: a qualitative study using narrative interviews was used to elicit accounts from 24 people with MND and 18 current family carers and 10 former family carers. Results: the needs of patients and carers are not being adequately met in the final stages of MND and there appears a need for increased, co-ordinated support from palliative care services. The use of advance care planning tools is regarded as beneficial for patients and carers, but health professionals demonstrate a limited understanding of them. Anxiety and distress in patients, carers and bereaved carers is heightened during this period. Carer burden is excessive and may exacerbate patient distress and desire for hastening death. Conclusion: this study has identified a number of issues people with MND and their carers face in the final stages of the illness, indicating some ways in which health, social and palliative care services could be improved or co-operate more effectively in order to better meet their needs.

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Palliative care and taboos within motor neurone disease

Palliative Medicine ◽

10.1177/0269216393007004s11 ◽

1993 ◽

Vol 7 (4_suppl) ◽

pp. 69-72 ◽

Cited By ~ 2

Author(s):

Tony O'Brien

Keyword(s):

Palliative Care ◽

Care Home ◽

Motor Neurone ◽

Bad News ◽

Motor Neurone Disease ◽

Place Of Death ◽

Basic Change ◽

Incurable Illness ◽

Imminent Death

Taboos, whether held by professional carers, patients or families have the capacity to influence a whole range of choices that must be made during the course of any illness. In the case of motor neurone disease, decisions regarding if, when and how to break bad news, the place of care (home, hospital or hospice), the introduction of aids and devices, and, ultimately, choices regarding the place of death, will all be influenced by a range of taboos. If professional carers have major unresolved issues concerning their own mortality, it is unlikely that they will be able to truly stand alongside those who are facing their own imminent death. In discussing taboos, essentially what is of concern is attitudes. A basic change in attitudes is required if we are to stop viewing patients with incurable illness as some kind of medical failure.

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55 Palliative care for people with motor neurone disease. An integrative literature review

BMJ Supportive & Palliative Care ◽

10.1136/bmjspcare-2018-mariecurie.55 ◽

2018 ◽

Vol 8 (3) ◽

pp. 381.1-381

Author(s):

Lorna Hollowood

Keyword(s):

Palliative Care ◽

Literature Review ◽

Ethical Decision Making ◽

Motor Neurone ◽

Motor Neurone Disease ◽

Disease Assessment ◽

List Type ◽

Care Givers ◽

Advance Care ◽

Area Of Concern

Motor neurone disease (MND) is a rare progressive neurodegenerative disease which results in muscle weakness reduced mobility dysphagia and speech and breathing difficulties with no curative treatment or remission where 50% of patients die within three years of their first symptom and many dying within a year of diagnosis (Whitehead et al. 2012 Wood-Allum 2014). Access to palliative care for people with motor neurone disease (MND) is an area of concern for the person with the condition as well as the carers supporting them (NICE 2016). This literature review examines the specific challenges in palliative care for people with MND and their carers.A systematic search was undertaken of the literature yielding 534 articles. This was reduced by inclusion and exclusion criteria to 43 articles which were selected for critical appraisal for their relevance to the topic using MacKenzie et al’s (2010) quality review tool resulting. 16 articles were themed using Thomas and Harden’s (2008) thematic analysis approach.Four themes emerged from the literature: the specific needs of carers of people with MND; Service provision; hope and depression and ethical decision-making.Despite a lack of quantifiable data relating to specialist palliative care to improve palliative outcomes in people with MND the literature shows that MND patents and their care-givers have a great need for integrated services which are equipped to deal with their very specific needs. The management of hope and depression should form an integral part of the palliative care provision. Advance care planning offers a framework to support communication between services and families. The symptoms experienced at end of life require specialist skills to manage and needs the support of a multidisciplinary team.References. Whitehead B, O’Brien MR, Jack BA, Mitchell D. Experiences of dying death and bereavement in motor neurone disease: a qualitative study.Palliative Medicine [online] 2012;26(4):368–78. Available from: MEDLINE. Wood-Allum CA. Unanswered questions and barriers to research in the palliative care of motor neurone disease patients. Journal of Palliative Care [online] 2014;30(4):302–306. Available from: Academic Search Complete. NICE. Motor neurone disease: assessment and management NICE guidelines [NG42] [online]2016. Available from: https://www.nice.org.uk/guidance/cg105

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Palliative care of patients with motor neurone disease

Progress in Palliative Care ◽

10.1179/096992607x236416 ◽

2007 ◽

Vol 15 (6) ◽

pp. 285-293 ◽

Cited By ~ 4

Author(s):

David Oliver ◽

Colin Campbell ◽

Abigail Wright

Keyword(s):

Palliative Care ◽

Motor Neurone ◽

Motor Neurone Disease

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