The use of digital legacies with people affected by motor neurone disease for continuing bonds: an interpretative phenomenological analysis study

Palliative Medicine, 2019 33(7) p.812-822

Clabburn, Oliver; Knighting, Katherine; Jack, Barbara A; O'Brien, Mary R

The aims of this study were to investigate the views, perceptions and experiences of digital legacies with people affected by motor neurone disease. Creating a digital legacy provided a sense of purpose for people with motor neurone disease and a way to convey personality and life experiences. Bereaved young people can modify disease-related memories of the person and gain comfort from hearing and seeing videos.

Fulltext available in Palliative Medicine  

Advance care planning in progressive neurological diseases: lessons from ALS

BMC Palliative Care 2019 18:50
Antje A. Seeber, A. Jeannette Pols, Albert Hijdra, Hepke F. Grupstra, Dick L. Willems and Marianne de Visser

The authors used the knowledge gained from observing ACP in a tertiary ALS centre in Amsterdam to formulate recommendations for integration of ACP in the care of patients with other chronic progressive neurological diseases.  They suggest that it is feasible to integrate ACP into follow-up of patients with ALS and PMA from diagnosis onwards. Supported by recent literature, they argue that such a well-structured approach would enhance the quality of care and life of patients with other chronic progressive neurological diseases.

Fulltext available in BMC Palliative Care 

Palliative care for those with neurological diseases

Palliative Medicine April 2018 32(4)

This special issue of Palliative Medicine includes research aimed at increasing knowledge in the field of neurological diseases.  It includes the following topics:

• Interventions for informal caregivers of people with motor neurone disease
• Views about assisted dying of people with Huntingdon's disease
• Palliative care triggers in progressive neurodegenerative conditions

Withdrawal of ventilation at the patient's request in MND: a retrospective exploration of the ethical and legal issues that have arisen for doctors in the UK

BMJ Supportive and Palliative Care, 2017 June 7(2) pp 189-196
Kay Phelps; Emma Regen; David Oliver; Chris McDermott

Although clinicians were clear about the legality of withdrawal of treatment in theory, the practice led to ethical and moral uncertainty and mixed feelings, with many respondents experiencing negative reactions from other healthcare professionals. The authors conclude that more guidance, open discussion about the ethical issues and education to support professionals is needed.

Fulltext available in BMJ Supportive and Palliative Care
Available in print in Arthur Rank Hospice Library, Cambridge

Identifying and addressing the support needs of family caregivers of people with motor neurone disease using the Carer Support Needs Assessment Tool

Palliative and Supportive Care, 2017 15(1) 32-43

Aoun, S., Deas, K., Kristjanson, L., & Kissane, D. 

The caregivers who took part in this study identified the highest support priorities as “knowing what to expect in the future,” “knowing who to contact if concerned,” and “equipment to help care”. It was found that the CSNAT was judged to be relevant and useful by both caregivers and care advisers, providing a structured approach to facilitating discussions and addressing needs.

Fulltext available in Palliative and Supportive Care

Motor neurone disease - quality standard (QS 126)

National Institute for Health and Care Excellence, July 2016

This standard covers the assessment and management of MND, including end of life care, and is designed to support the measurement of improvement.

The full document can be accessed at  MND (QS 126)

Advance care planning in motor neuron disease: a systematic review

Palliative & Supportive Care, Aug 2016, vol. 14, no. 4, p. 411-432

Murray, Leigh, Butow, Phyllis N.

This review aims to summarize what is known about the prevalence, content, patient/caregiver benefits, healthcare professional awareness/support, and healthcare outcomes associated with ACP in the MND setting. 

Fulltext available in Palliative and Supportive Care

Advance care planning in motor neuron disease: A qualitative study of caregiver perspectives

Palliative Medicine, May 2016, vol. 30, no. 5, p. 471-478
Murray, Leigh, Butow, Phyllis N, White, Kate, Kiernan, Matthew C, D'Abrew, Natalie, Herz, Helen

This study aimed to explore the acceptability and impact of advance care planning from the point of view of caregivers.  Many of those who took part thought that the ACP document helped, or would help, in terms of patient autonomy, facilitating difficult decision-making and improving communication within families. The authors noted that the timing and manner of its introduction required sensitivity to avoid potential harms in approaching the subject too soon.

Available in print in Arthur Rank Hospice Library, Brookfields Hospital

Symptom management and end-of-life care in amyotrophic lateral sclerosis

Neurologic clinics, Nov 2015, vol. 33, no. 4, p. 889-908

Jackson, Carlayne E, McVey, April L, Rudnicki, Stacy, Dimachkie, Mazen M, Barohn, Richard J

The number of available symptomatic treatments has markedly enhanced the care of patients with amyotrophic lateral sclerosis (ALS). Once thought to be untreatable, patients with ALS today clearly benefit from multidisciplinary care. Unfortunately, there are few randomized controlled trials of medications or interventions addressing symptom management. In this review, the authors provide the level of evidence, when available, for each intervention that is currently considered standard of care by consensus opinion. 

Fulltext available from Elsevier in Neurologic Clinics

Breathlessness in motor neurone disease: a review of the current strategies and gaps in the evidence

Current Opinion in Supportive & Palliative Care, September 2014, vol./is. 8/3(213-7)

Allcroft P

Palliative care teams are increasingly becoming involved in the complex care of these patients at an earlier stage in their illness. Assessment of breathlessness and its successful management improves the QoL of patients with MND and may minimize hospitalisation.

Full text available in Current Opinion in Supportive and Palliative Care

What palliative care can do for motor neurone disease patients and their families

European Journal of Palliative Care, November/December 2013, Vol/iss 20/6 (286-89)
Oliver, David;  Aoun, Samar

Appropriate palliative care is essential for people with motor neurone disease, a progressive and irreversible neurological condition that can have distressing symptoms in its later stages. David Oliver and Samar Aoun detail how and when the specialist palliative care team should get involved.

Available in print at Arthur Rank House, Brookfields Hospital

The impact on the family carer of motor neurone disease and intervention with noninvasive ventilation

Journal of Palliative Medicine, December 2013, vol./is. 16/12(1602-9)

Baxter SK, Baird WO, Thompson S, Bianchi SM, Walters SJ, Lee E, Ahmedzai SH, Proctor A, Shaw PJ, McDermott CJ

NIV was perceived as having little impact on carer burden. The data however highlighted a range of sources of other burdens relating to the physical strain of caring and role change; the challenge inherent in having time away; and problems relating to the timing of equipment and service delivery.