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. 

The influence of Kinesiology Taping on the volume of lymphoedema and manual dexterity of the upper limb in women after breast cancer treatment

European Journal of Cancer Care, 2016, 25 (4) 647-660

J. Taradaj PT, T. Halski PT,  J. Rosinczuk, R. Dymarek, A. Laurowski and A. Smykla

In addition to evaluating the effect of kinesiology taping on the size of lymphoedema and manual dexterity  the authors also examined whether the application of KT can replace the traditional and standard multilayered bandaging in the treatment of upper extremity lymphoedema.  After 4-weeks of therapy, they concluded that taping was not an effective method of reducing lymphoedema II and III and cannot yet replace the traditional and standard multilayered bandaging in the treatment of upper extremity lymphoedema.

Cardiovascular implanted electronic devices in people towards the end of life, during cardiopulmonary resuscitation and after death: guidance from the Resuscitation Council (UK), British Cardiovascular Society and National Council for Palliative Care

Heart. 2016 June;102 (Suppl 7) A1-A17
David Pitcher, Jasmeet Soar, Karen Hogg, et al

This document has been developed to provide guidance for all healthcare professionals who may encounter people with CIEDs in the situations described and for healthcare managers and commissioners. Its aim is to:

• Help to ensure that people who have CIEDs, or are considering implantation of one, receive explanation of and understand the practical implications and decisions that this entails
• Promote a good standard of care and service provision for people in the UK with CIEDs in the circumstances described
• Offer relevant ethical and legal guidance on this topic
• Offer guidance on the delivery of services in relation to deactivation of CIEDs where appropriate
• Offer guidance on whether any special measures are needed when a person with a CIED receives cardiopulmonary resuscitation
• Offer guidance on the actions needed when a person with a CIED dies
• 
  

Fulltext available in HEART

A systematic review and meta-analysis of meditative interventions for informal caregivers and health professionals

BMJ Supportive and Palliative Care, 2016 6(2) 160-169 

Marisa Dharmawardene, Jane Givens, Amy Wachholtz, Suzana Makowski, Jennifer Tjia

The aim of this study was to review the evidence for meditative interventions on physical and emotional markers of well-being as well as job satisfaction and burnout among informal caregivers and health professionals.  It concludes that meditation provides a small to moderate benefit for stress reduction but that more research is needed to establish the effects on burnout and caregiver burden.

Fulltext available in BMJ Supportive and Palliative Care

Available in print in Arthur Rank Hospice Library, Brookfields Hospital

Is pedagogy of mortality a good approach to bereavement care?

European Journal of Palliative Care, 2016 May/June 23(3) 146-148

Paul J Moon

In this article, the author argues that one aspect of bereavement care could be to support grievers in developing a meaningful sense of need for active preparation for future death events, including one's own: the pedagogy of mortality.

Available in print in Arthur Rank Hospice Library, Brookfields Hospital

Nicotine withdrawal: an often overlooked and easily reversible cause of terminal restlessness

European Journal of Palliative Care, 2016 May/June 23(3) pp 128-129

Shamila Ginige

Nicotine withdrawal is often overlooked as a possible underlying cause of terminal restlessness or delirium. It is easily reversible and should definitely be considered when assessing delirious patients in palliative care, suggests the author.

Available in print in Arthur Rank Hospice Library, Brookfields Hospital

Use of point-of-care ultrasound in palliative care: a case report

European Journal of Palliative Care, 2016 May/June 23(3) 114-5
Graham Grove and David Holden

Point-of-care ultrasound is increasingly used to complement clinical findings in many specialties beyond emergency medicine and critical care. Here, the authors describe how the technology was used at the home of a patient with presumed malignant ascites to bring symptom relief.

Available in print in Arthur Rank Hospice Library, Brookfields Hospital

A review of the evidence for adjustable compression wrap devices

Journal of wound care, May 2016, vol. 25, no. 5, p. 242-247

Williams, A

Individuals with lymphoedema, venous ulceration and lipoedema often require long-term compression therapy to prevent and manage problems such as chronic ulceration and skin changes, persistent swelling and shape distortion. Adjustable compression wrap devices using hook and loop fasteners, commonly called VELCRO brand fasteners, present new opportunities for improving treatment outcomes, supporting patient independence and self-management in the use of compression therapy. This paper reports the findings of an evidence review of adjustable compression wrap devices in people with lymphoedema, chronic oedema, venous ulceration and lipoedema.

Pharmacological management of bronchorrhea in malignant disease: a systematic literature review

Journal Of Pain And Symptom Management, May 2016, vol. 51, no. 5, p. 916-925

Rémi, Constanze, Rémi, Jan, Bausewein, Claudia

The aim of the review was to identify, appraise and evaluate the effectiveness of symptomatic pharmacological treatments for bronchorrhea.  Limited data was found and it was concluded that a pragmatic strategy of management is needed which should include promising treatment options reported in the literature but should also take into account availability of drugs, individual tolerability and costs.

Barriers and facilitators to end-of-life communication in advanced chronic organ failure

International Journal of Palliative Nursing, May 2016, vol. 22, no. 5, p. 222-229

Van den Heuvel, Liza Amc, Spruit, Martijn A, Schols, Jos Mga, Hoving, Ciska, Wouters, Emiel Fm, Janssen, Daisy Ja

The results of this quantitative, cross-sectional study suggest that the most important barriers for family caregivers were related to uncertainty about expected care and focus on staying alive instead of dying. The facilitators were related to trust in and competence of their physician and earlier experiences with death in their (social) environment. For most barriers and facilitators, agreement between patients and family caregivers was fair to moderate, suggesting an individual approach is needed to improve communication at the end of life.

Available in print in Arthur Rank Hospice, Brookfields Hospital

Cancer-related fatigue in palliative care: a global perspective

International Journal of Palliative Nursing, May 2016, vol. 22, no. 5, p. 244-252

Vilchynska, Tetyana, Beard, Barbara

Apart from exercise, cognitive behavioural therapy and psychosocial interventions, there is an absence of high quality evidence that favours any particular pharmacological and non-pharmacological treatments for cancer-related fatigue. The authors propose solutions for an optimum CRF care pathway in the palliative setting using an integrated care pathway, with an emphasis on treating the symptoms not the syndrome.

Available in print in Arthur Rank Hospice Library, Brookfields Hospital

Shadow into Light: a Bristol-based arts project for bereavement

Bereavement Care, Jan 2016, vol. 35, no. 1, p. 7-12,

Glover, Eleanor, Rice, Gillian, Phillips, Val, Williamson, Claire

Shadow into Light (SIL) is a creative and therapeutic art and writing project offering support to bereaved people, facilitated by a poet and artist with a counsellor also present. They use word and image to investigate and express feelings and assist development of new coping mechanisms, while developing supportive peer relationships. This article outlines the aims of the project and details the content of each session. Evaluation of the first two courses held found that the project was meeting its aims.

Fulltext available in Bereavement Care

Available in print in Arthur Rank Hospice, Brookfields Hospital

Learning from linguistics: structuring our sentences sensitively

Bereavement Care, Jan 2016, vol. 35, no. 1, p. 31-35

Carr, Sarah

This article examines basic techniques to improve sentence clarity to help bereavement support workers to use understandable words and phrases when communicating with clients, both verbally and in writing.  It also describes how to check the readability of  text using a feature built into Microsoft Word. References.

Fulltext available in Bereavement Care

Available in print in Arthur Rank House Library, Brookfields Hospital

A service evaluation of an integrated model of palliative care of cystic fibrosis

Palliat Med. 2016 30 (7) p698-702

Bourke SJ, Booth Z, Doe S, Anderson A, Rice S, Gascoigne A, Quibell R

In this article, the authors report an evaluation of an integrated model of care for people with cystic fibrosis in which palliative specialists worked with the CF team to provide palliative care alongside standard care. Both teams rated this model of care highly and suggest it has successfully overcome difficulties in access to specialist palliative care for patients with CF.

Fulltext available in BMJ Supportive and Palliative Care
Available in print in Arthur Rank House Library, Brookfields Hospital

Advance care planning in England: is there an association with place of death? Secondary analysis of data from the National Survey of Bereaved People

BMJ Supportive & Palliative Care 2016 June 16

Josie Dixon, Derek King, Martin Knapp

The authors used an expressed preference for place of death which was recorded by health care staff as an indicator of advanced care planning in order to explore whether ACP is associated with place of death.  They also considered if enough support was available to care for a person dying at home and the overall quality of care and pain management.  They found a strong association between advance care planning and a range of quality outcomes, including preferred place of death.

Fulltext available in BMJ Supportive and Palliative Care

Available in print in Arthur Rank House Library, Brookfields Hospital

Education and training to enhance end-of-life care for nursing home staff: a systematic literature review

BMJ Supportive & Palliative Care 2016 June 21

Sally Anstey, Tom Powell, Bernadette Coles, Rachel Hale, Dinah Gould

Education is thought to be the most important way of overcoming the difficulties of providing good end of life care in nursing homes.  In this review, the authors found that the methodological quality of the the research was poor and that there is an urgent need to design educational interventions that could potentially improve end of life care in this setting.

Metastatic spinal cord compression: diagnosis and management

BMJ, May 2016
Rasha Al-Qurainy; Emily Collis

This clinical review focuses on the causes, presentation and management of MSCC as a result of extradural masses.

Fulltext available in the  BMJ

Desire for hastened death: how do professionals in specialized palliative care react?

Psycho-oncology, May 2016, vol. 25, no. 5, p. 536-543

Galushko, M, Frerich, G, Perrar, K M, Golla, H, Radbruch, L, Nauck, F, Ostgathe, C, Voltz, R

This study aimed to identify the responses of health professionals working in specialist palliative care to patients' desire for hastened death (DHD).  It identified a number of responses that related to the patients and to themselves as practitioners. The authors concluded that profound personal and professional development that strengthens their own resilience is necessary to respond to the challenges presented by DHD as well as establishing helpful relationships with patients.

Consensus norms for palliative care of people with intellectual disabilities in Europe

European Association of Palliative Care: White Paper, April 2015

This White Paper provides guidance on the care of people with intellectual disabilities and includes background information on its development, research evidence, practice examples and further resources.

Click here to access the document

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

A systematic review of reasons for gatekeeping in palliative care research

Palliative medicine, Jun 2016, vol. 30, no. 6, p. 533-548

Kars, Marijke C, van Thiel, Ghislaine Jmw, van der Graaf, Rieke, Moors, Marleen, de Graeff, Alexander, van Delden, Johannes Jm

Gatekeeping - preventing eligible patients from inclusion in research - is thought to be the reason for the failure of many studies in palliative care.  This review sought to identify potential gatekeepers and explore their reasons for blocking patients' participation.

Available in print in Arthur Rank Hospice Library, Brookfields Hospital

Factors influencing Australian general practitioners' clinical decisions regarding advance care planning: a factorial survey

Journal of Pain and Symptom Management, Apr 2016, vol. 51, no. 4, p. 718

Sinclair, Craig, Gates, Kiri, Evans, Sharon, Auret, Kirsten Anne

In this study, the authors found that the likelihood of initiating ACP was influenced by GP attitudes and psychosocial aspects of the doctor-patient relationship. They suggest that to encourange engagement with the process, training needs to be targeted at attitudes towards ACP and communication skills.

Underrecognition and undertreatment of pain and behavioral symptoms in end-stage dementia

American Journal of Hospice and Palliative Medicine, Apr 2016, vol. 31, no. 3, p. 276-280

Brecher, David B., West, Tasheba L.

Symptoms in end-stage dementia are often under-recognised and under-treated because of the patients' reduced ability to communicate.  This article highlights the role of assessment scales and pain management in improving behavioral symptoms.  It also explores how an interdisciplinary team approach can develop a care plan to optimise patient care.

Management of breathlessness in patients with advanced cancer: a narrative review

American Journal of Hospice and Palliative Medicine, Apr 2016, vol. 31, no. 3, p. 286-290

Lok, Chan Wing

This article reviews the etiology, assessment and measurement of dyspnea in patients with advanced cancer and  both the pharmacological and nonpharmacological interventions that will provide the greatest relief.

Hospice palliative care volunteers: a review of commonly encountered stressors, how they cope with them, and implications for volunteer training/management

American Journal of Hospice and Palliative Medicine, Mar 2016, vol. 31, no. 2, p. 201-204

Claxton-Oldfield, Stephen

The results of this review suggest that hospice volunteers generally do not perceive their work as highly stressful.  However, potential challenges and the ways in which the volunteers coped with them were identified. 

Hospital at home: home-based end-of-life care

Cochrane Database of Systematic Reviews, Online Publication Date: February 2016 

Sasha Shepperd, Daniela C Gonçalves-Bradley, Sharon E Straus, Bee Wee

The evidence included in this review supports the use of home-based end-of-life care programmes for increasing the number of people who will die at home, although the numbers of people admitted to hospital while receiving end-of-life care should be monitored. Future research should systematically assess the impact of home-based end-of-life care on caregivers.

Fulltext available here

Live Discharge from Hospice and the Grief Experience of Dementia Caregivers

Journal of Social Work in End-of-life & Palliative Care 2016, 12 (1-2): 47-62
Stephanie P Wladkowski

This qualitative study (N = 24) explored the experience of caregivers of adults with dementia, including Alzheimer's disease, who experienced a 'live' discharge from hospice. Specifically, the experience of grief is examined.  It concludes that hospice social workers are well positioned to offer emotional and other concrete support to caregivers who experience a 'live' discharge.

Te Kete Marie - the peaceful basket: an initiative for supporting people with dementia or delirium

International Journal of Palliative Nursing 2016, 22 (3): 130-6

Leanne Bolton, Tanya Loveard

Having identified the challenge to staff on an inpatient unit of caring for an increasing number of patients with dementia and delirium, an occupational therapist and two nurses developed a toolkit to improve their care.  The initiative took place in a hospice in New Zealand and the authors hope that sharing their findings will enable it to be duplicated in similar settings.

Available in print in Arthur Rank Hospice Library, Cambridge

Development and efficacy of music therapy techniques within palliative care

Complementary therapies in clinical practice, May 2016, vol./is. 23/(125-129)

Clements-Cortés, Amy

The author presents an overview of music therapy techniques used with palliative care patients with reference to the descriptive and research literature.  She also discusses its role in the grieving and bereavement process.