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)

Inpatient transfer to a care home for end-of-life care: What are the views and experiences of patients and their relatives? A systematic review and narrative synthesis of the UK literature

Palliative Medicine 2016 July 28

Tabitha Thomas, Isla Kuhn, Stephen Barclay

Transfers from hospital or 'hospice palliative care units' to care homes for end-of-life care are an increasingly common part of clinical practice but are a source of anxiety and distress for patients, relatives and healthcare professionals. This review revealed that the UK literature concerning patient transfers to care homes is very limited. Further research is urgently needed in this area, especially studies of patients themselves, in order to understand their experiences and views.

Fulltext available in Palliative Medicine

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

The mental health and mortality impact of death of a partner with dementia

International Journal of Geriatric Psychiatry, Aug 2016, vol. 31, no. 8, p. 929-937

Shah, Sunil M, Carey, Iain M, Harris, Tess, DeWilde, Stephen, Victor, Christina R, Cook, Derek G

The health in the year before and after loss of a partner with dementia compared with other bereavements is described.  In the year before bereavement, partners of individuals dying with dementia experience poorer mental health than those facing bereavement from other causes, and their partner is less likely to receive palliative care. In the year after, individuals whose partner died with dementia experience some attenuation of the adverse health effects of bereavement. Services need to address the needs of carers for individuals dying with dementia and improve access to palliative care. 

A prospective study of patient-centred outcomes in the management of malignant pleural effusions

International Journal of Palliative Nursing 2016 July 2, 22 (7): 351-8

Susan Walker, Marijana Zubrinic, Christine Massey, Yaron Shargall, Eric Bédard, Gail Darling

The aim of the study was to evaluate quality of life and satisfaction with treatment using patient-reported outcomes for four different treatment strategies. The authors found no significant difference between the treatments.  While all treatment options addressed the patients' symptoms and relieved dyspnoea, an indwelling pleural catheter offered effective treatment with minimal discomfort and time in hospital yet still high satisfaction.

Available in print in Arthur Rank Hospice, Brookfields Hospital 

An unusual presentation of acute lithium toxicity in a hospice

European Journal of Palliative Care, July/August 2016, Volume 23 Number 4, p162-4

Jennifer Hayes, Fay Murray-Brown, Alison Stewart and Rebecca Baines

Lithium is a widely used treatment for mood disorders but, although effective, it has a narrow therapeutic window. Palliative care patients taking lithium are at increased risk of toxicity. This article describes an atypical case of acute lithium toxicity in a woman with symptoms resembling those of panic episodes.

Available in print in Arthur Rank Hospice Library, Brookfields Hospital

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

Two worlds: Adolescents' strategies for managing life with a parent in hospice

Palliative and Supportive Care, 2016 June, vol/iss 14/3, p177-86

Denice Kopchak Sheehan, M. Murray Mayo, Grace H. Christ, Kim Heim, Stephanie Parish, Ghada Shahrour and Claire Burke Draucker

This study explored the strategies adolescents used to cope with their parents' illness in the last months of life and shortly after their death. The authors describe the 'two worlds' in which adolescents live and the stages through which they pass in the course of the parent's illness and following bereavement. The results of this research can help in the development of targeted interventions to meet an adolescent's specific needs.

Fulltext available in Palliative and Supportive Care

The use of protocol in breaking bad news: evidence and ethos

International Journal of Palliative Nursing, Jun 2016, vol. 22, no. 6, p. 265-271
Dean, Antonia, Willis, Susan

This article discusses health professionals use of protocol in the breaking of bad news, focusing particularly on the SPIKES framework. It examines the evidence of impact on the patient experience and makes recommendations for further outcome-based research. The ethos of the step-wise protocol is debated, questioning whether or not it hinders individualised care and the formation of a genuine relationship between patient and professional. Finally, recommendations for practice are suggested.


Available in print in Arthur Rank Hospice, Brookfields Hospital

A team approach to recruitment in hospice research: engaging patients, close people and health professionals

International Journal of Palliative Nursing, Jul 2016, vol. 22, no. 7, p. 324-332

L Campbell, Cathy, Bailey, Cara, Armour, Kathy, Perry, Rachel, Orlando, Rosanna, Kinghorn, Philip, Jones, Louise, Coast, Joanna

Research in hospice settings is very challenging. This paper describes a case study of a successful multidisciplinary research team approach (MDRT) to the recruitment of participants (hospice patients, family members and health professionals) for a study in a hospice setting on the economic evaluation of end-of-life care.

Available in print in Arthur Rank Hospice Library, Brookfields Hospital

Considering the impact of stigma on lesbian, gay and bisexual people receiving palliative and end-of-life care

International Journal of Palliative Nursing, Jul 2016, vol. 22, no. 7, p. 334-340

Chidiac, Claude, Connolly, Michael

Stigma can have a negative effect on health and wellbeing and can influence the type of care received from health and social care professionals, including those working in palliative care. This paper presents a discussion of the impact that stigma has on LGB people who access and receive palliative and end-of-life care.

Available in print in Arthur Rank Hospice Library, Brookfields Hospital

How can nurses support relatives of a dying patient with the organ donation option?

Nursing in Critical Care, Jul 2016, vol. 21, no. 4, p. 214-224

Mills, Leanne, Koulouglioti, Christina

The purpose of the literature review was to summarise evidence related to nursing support for a dying patient's family with the option of organ donation. The authors concluded that clear information, sensitively and professionally delivered, helped families understand their loved ones' condition.  This in turn helped them to accept death and to consider the option of organ donation.