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 

It's a hard conversation to have'. Healthcare professionals' views concerning advance care discussions with young people affected by life-limiting neuromuscular diseases: an interview study

BMJ Supportive & Palliative Care, 2019 9(1) p. e9
Hiscock, Andy; Barclay, Stephen

There is very limited literature concerning the discussions about end-of-life plans healthcare professionals have with young people affected by life-limiting neuromuscular diseases. While recognising the inevitable progression of the conditions, there was no consensus among interviewees concerning best approaches to discuss end-of-life care plans. Several environmental and personal barriers were identified that lead to avoidance of the emotionally challenging and difficult conversations.

Top ten tips palliative care clinicians should know about caring for patients with neurologic illnesses

Journal of Palliative Medicine, 2019 22(2) p.193-198
Mendlik, Matthew T.; McFarlin, Jessica; Kluger, Benzi M.; et al

This article offers palliative care providers 10 useful tips that neurologists with palliative care training think all PC providers should know to improve care for patients with neurologic illness.

Integrating palliative care into neurology services: what do the professionals say?

BMJ Supportive & Palliative Care, 2018, 8 (1) 41-44
Hepgul, Nilay; Gao, Wei; Evans, Catherine J; et al

Here the authors present survey results describing the current levels of collaboration between neurology and palliative care services and exploring the views of professionals towards a new short-term integrated palliative care service (SIPC).  They suggest their results demonstrate the opportunity to increase collaboration between the services for people with progressive neurological conditions, and the acceptability of SIPC as a model to support this.

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

Palliative care for people with advanced major neuro-cognitive disorders

International Journal of Palliative Nursing; Oct 2017; vol. 23 (no. 10); p. 502-510

Crowther, Jacqueline; Costello, John

In this article, the authors discuss the major neuro-cognitive disorders.  Palliative and end-of-life care, including legal and ethical issues, common symptoms and nursing problems, are addressed.  The needs of family and lay caregivers, who form an important part of the overall experience of major neuro-cognitive disorders, are also highlighted. 

Available in print in Arthur Rank Hospice Library, Cambridge

The (Palliative) care of Huntington’s disease

Progress in Palliative Care; Aug 2017; 25(4) 165-170

Macleod, A. D.(Sandy); Jury, M. A.; Anderson, T.

Care for Huntington's disease is palliative from diagnosis. Based upon a review of literature and extensive clinical experience this article provides an overview of the palliative care issues facing patients and their families.

Fulltext available in Progress in Palliative Care

Available in print in the Arthur Rank Hospice Library, Cambridge

Palliative care and its emerging role in Multiple System Atrophy and Progressive Supranuclear Palsy

Parkinsonism and Related Disorders 2017, 34: 7-14

Louise Wiblin, Mark Lee, David Burn

This review aims to discuss the trajectory of disease in MSA and PSP, explore significant symptoms and summarize some evidence which exists for palliative care need and quality of life in these conditions. 

Symptomatic management of neurodegenerative disease in the elderly

Progress in Palliative Care, 2017, 25(1) 11-16

Oliver, David J; Veronese, Simone

An overview of the symptoms and psychological and social issues experienced by elderly patients with neurodegenerative diseases and the value of a palliative care approach throughout the disease trajectory for patients, families and carers.

Fulltext available in Progress in Palliative Care

Available in print in Arthur Rank Hospice Library, Cambridge

Respite for patients and carers in neurodegenerative disease: a grounded theory study

European Journal of Palliative Care, July/August 2016, Volume 23 Number 4, p175-9

Diane Laverty, Anne Arber and Sara Faithfull

The authors present the results of a grounded theory study that aimed to determine what residential respite care can offer to patients with neurodegenerative diseases and their carers, the issues and concerns for the carer in relation to respite and how respite can be used to provide a therapeutic outcome for patients and carers.

Available in print in Arthur Rank Hospice Library, Brookfields Hospital

The palliative care needs of people severely affected by neurodegenerative disorders: a qualitative study

Progress in Palliative Care, 2015, vol./is. 23/6(331-342)

Veronese, S., Gallo, G., Valle, A., Cugno, C., Chiò, A., Calvo, A., Rivoiro, C., Oliver, D. J.

The particular needs of people with advanced and progressive neurological disease are not well known. A qualitative approach was used, interviewing people with advanced amyotrophic lateral sclerosis/motor neurone disease (ALS/MND), multiple sclerosis (MS), Parkinson's disease (PD), and multiple systems atrophy (MSA) and their family carers to ascertain their particular needs. Focus groups of health and social care professionals allowed a professional view of the needs. People with progressive disease have many, difficult and distressing symptoms: physical, including pain, movement issues, swallowing and speech problems, psychological, feelings of being abandoned and of anxiety and depression, social, of isolation, of being a burden and of financial issues, and spiritual, of loss of hope and the meaning of life as they approach death.

Available in print in Arthur Rank Hospice Library, Brookfields Hospital

What does end stage in neuromuscular diseases mean? Key approach-based transitions

Current opinion in supportive and palliative care, Dec 2015, vol. 9, no. 4, p. 361-368

Tripodoro, Vilma Adriana, De Vito, Eduardo Luis

The purpose of this article is to revise the definition of end stage in the setting of neuromuscular disease (NMD), to understand the implications for the patient, family and healthcare team, and to address the obstacles involved in the lack of definition.  Better end-stage NMD definitions should help to identify the goals of care, but a broad range in time and intensity of deterioration make a valid definition difficult. This article emphasizes the relevance of an integrated approach through the whole trajectories of NMD patients considering key transitions.