Does respite care address the needs of palliative care service users and carers? Their perspectives and experiences

International Journal of Palliative Nursing; Apr 2017; vol. 23 (4) p 174-185
Wolkowski, Anna; Carr, Susan M

This research revealed that although there is a need for respite care and that it's valued by service users and carers, there are some fundamental tensions in service models which limit its potential. The authors conclude that reframing respite care as an empathic response within a new palliative care approach is needed. 

Available in print in Arthur Rank Hospice Library, Cambridge

Towards a model of loss navigation in adolescence

Death Studies; May 2017; vol. 41 (5) p 291-302
Lytje, Martin

The Model of Loss Navigation in Adolescence was developed from a focus group study with 39 Danish adolescents (aged 9-17). Centered on the three factors--Being Different, Being in Control, and Being in Grief--the model highlights the social conventions children have to navigate and how these influence both their day-to-day lives and their road to recovery.

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

Addressing palliative care clinician burnout in organizations: a workforce necessity, an ethical imperative

Journal of Pain and Symptom Management; Jun 2017; vol. 53 (no. 6); pp 1091-1096
Harrison, Krista L; Dzeng, Elizabeth; Ritchie, Christine S; Shanafelt, Tait D; Kamal, Arif H; Bull, Janet H; Tilburt, Jon C; Swetz, Keith M

In this article the authors consider the ethical responsibility for the management and prevention of burnout at an organisational level.

Palliative care professionals' care and compassion for self and others: a narrative review

International Journal of Palliative Nursing; May 2017; vol. 23 (no. 5) pp 219-229
Mills, Jason; Wand, Timothy; Fraser, Jennifer A

From their review of the literature, the authors identified four themes: (1) importance of self-care; (2) awareness, expression, and planning; (3) dimensions of self-care; and (4) balanced compassion. It highlights both the importance and multifaceted nature of palliative care professionals' self-care, in relation to self-compassion and compassion for others. 

Available in print in Arthur Rank Hospice Library, Cambridge

HOPES for palliative wounds

International Journal of Palliative Nursing; Jun 2017; vol. 23 (no. 6) pp 264-268
Woo, Kevin

Kevin Woo looks at the clinical assessment of key symptoms which he says should include (H)aemorrhage, (O)dour control, (P)ain, (P)ruritis, (E)xudate and (S)uperficial bioburden, as recommended by the European Oncology Nursing Society.

Ketamine for cancer pain: what is the evidence?

Jonkman, Kelly; van de Donk, Tine; Dahan, Albert
Current Opinion in Supportive and Palliative Care; Jun 2017; vol. 11 (no. 2) pp 88-92

This review found four randomized controlled trials that examined the benefit of oral, subcutaneous or intravenous ketamine in opioid refractory cancer pain but none showed clinically relevant benefit in relieving pain or reducing opioid consumption. These findings contrast the benefit from ketamine observed in a large number of open-label studies and (retrospective) case series. The authors relate the opposite outcomes to methodological issues. They conclude that there is still insufficient evidence to state with certainty that ketamine is not effective in cancer pain.

Doll therapy for dementia sufferers: A systematic review

Complementary Therapies in Clinical Practice; Feb 2017; vol. 26 pp 42-46
Ng, Qin Xiang; Ho, Collin Yih Xian; Koh, Shawn Shao Hong; Tan, Wei Chuan; Chan, Hwei Wuen

The authors of this systematic review suggest that despite some ethical concerns and the lack of empirical data, there is evidence that doll therapy is effective for dementia care, is well-aligned with the ethos of person-centred care and could be useful in the management of dementia patients.

Building community capacity in bereavement support: lessons learnt from bereaved caregivers

American Journal of Hospice and Palliative Medicine; Apr 2017; vol. 34 (no. 3) pp 275-281
Breen, Lauren J.; Aoun, Samar M.; Rumbold, Bruce; McNamara, Beverley; Howting, Denise A.; Mancini, Vincent

The study's purpose was to inform bereavement support by determining the advice people bereaved through expected deaths in palliative care have for others in that situation.   The authors suggest their responses could be incorporated into information brochures, posters, and other community education avenues in order to upskill palliative care bereavement volunteers and the wider community so that bereaved family caregivers are best supported.

The use of ultrasound in palliative care and hospice

American Journal of Hospice and Palliative Medicine; May 2017; vol. 34 (no. 4) pp 385-391
Chernack, Betty; Knowlton, Sasha E.; Kohler, Minna J.

This was a literature review into the use of ultrasound as a diagnostic tool, a therapeutic modality and a tool to accurately guide palliative procedures in hospice and palliative care.

Do blood transfusions make a difference when you are dying?

Progress in Palliative Care; Jun 2017; vol. 25 (no. 3) pp 126-131

Woodwark, Catherine; Dean, Antonia

This was a retrospective review of patient records over a 54 month period.  The researchers documented the reasons for transfusion and their impact in light of NICE guidelines and studies that question the benefits and costs of red cell transfusions. As a result of this study the hospice has developed an algorithm for the diagnosis and management of fatigue with an emphasis on assessment and re-evaluation after each intervention.

Fulltext available in Progress in Palliative Care

Available in print in Arthur Rank Hospice Library, Cambridge

'Dignity therapy', a promising intervention in palliative care: A comprehensive systematic literature review

Palliative Medicine; June 2017; vol. 31 (no. 6) pp492-509
Martínez, Marina; Arantzamendi, María; Belar, Alazne; Carrasco, José Miguel; Carvajal, Ana; Rullán, María; Centeno, Carlos

The authors report that the available evidence suggests that DT is beneficial, with patients and families evaluating it positively. The results suggest that patients with the highest distress levels can benefit the most from therapy, but more studies are needed to confirm DT’s outcomes.

Fulltext available in Palliative Medicine

Available in print in Arthur Rank Hospice Library, Cambridge

Opioids combined with antidepressants or antiepileptic drugs for cancer pain: Systematic review and meta-analysis

Palliative Medicine; June 2017
Kane, Chris M; Mulvey, Matthew R; Wright, Sophie; Craigs, Cheryl; Wright, Judy M; Bennett, Michael I

The aim of this study was to determine if there is additional benefit when opioids are combined with antidepressant or antiepileptic drugs for cancer pain. The authors conclude that combination therapy did not significantly improve pain relief in patients with tumour-related cancer pain compared with opioid monotherapy but due to the heterogeneity of patient samples, benefit in patients with definite neuropathic cancer pain cannot be excluded.

Fulltext is available in Palliative Medicine

Available in print in Arthur Rank Hospice Library, Cambridge

Palliative care for Parkinson's disease: Patient and carer's perspectives explored through qualitative interview

Palliative Medicine; Jul 2017; vol. 31 (no. 7); p. 634-641
Fox, Siobhan; Cashell, Alison; Kernohan, W George; Lynch, Marie; McGlade, Ciara; O'Brien, Tony; O'Sullivan, Sean S; Foley, Mary J; Timmons, Suzanne

The aim of this study was to explore the palliative care and related issues most affecting people with Parkinson's disease and their families and to examine their perceptions about and understanding of palliative care. Crises requiring Specialist Palliative Care involvement may occur at diagnosis and with advancing illness.  The authors suggest that an holistic palliative care approach could address the complex physical and psychosocial symptoms experienced by people with Parkinson's disease and their carers.

Fulltext available in Palliative Medicine

Available in print in 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. 

Palliative care clinicians' knowledge of the law regarding the use of the Deprivation of Liberty Safeguards (DoLS).

BMJ Supportive & Palliative Care 2017 April 24

Caroline Barry, Anna Spathis, Sarah Treaddell, Sally Carding, Stephen Barclay

The aim of the study was to examine palliative care clinicians' level of knowledge of the law regarding the use of the Deprivation of Liberty Safeguards (DoLS).  The authors found that clinicians working in palliative care have good levels of knowledge of the DoLS but raised concerns about the difficulty of using them in practice, the relevance of the Safeguards to palliative care and delays in assessments. 

Fulltext available in BMJ Supportive and Palliative Care

Available in print in Arthur Rank Hospice Library, Cambridge

Consensus statement of the International Summit on Intellectual Disability and Dementia related to end-of-life care in advanced dementia.

Journal of Applied Research in Intellectual Disabilities: JARID 2017 May 9

Philip McCallion, Mary Hogan, Flavia H Santos, Mary McCarron, Kathryn Service, Sandy Stemp, Seth Keller, Juan Fortea, Kathleen Bishop, Karen Watchman, Matthew P Janicki

This report on end of life care in advanced dementia makes recommendations that will ensure greater and more appropriate support at the end of life for persons with intellectual disabilities and advanced dementia.

The Patient Dignity Inventory: just another evaluation tool? Experiences with advanced cancer patients

Palliative & Supportive Care 2017 June 21, pp1-7

María Rullán, María Arantzamendi, Ana Carvajal, Marina Martínez, Amaia Saenz de Ormijana, Carlos Centeno

The aim of the present work was to generate a better understanding of the experiences of healthcare staff when using the PDI. The authors conclude that as well as its intrinsic therapeutic value, it often led to a meaningful conversation with the patients on the meaning of life, dignity and other sensitive issues related to the process of advanced illness.

Fulltext available in Palliative and Supportive Care

Recommendations to reduce inequalities for LGBT people facing advanced illness: ACCESSCare national qualitative interview study

Palliative Medicine 2017 April 1
Katherine Bristowe, Matthew Hodson, Bee Wee, Kathryn Almack, Katherine Johnson, Barbara A Daveson, Jonathan Koffman, Linda McEnhill, Richard Harding

Despite recent legislative change, experiences of discrimination and exclusion in health care persist for LGBT people. Ten recommendations, for health-care professionals and services/institutions, are made from the data which are simple, low cost and offer potential gains in access to, and outcomes of, care for LGBT people.

Full text available in Palliative Medicine

“Unexpected and distressing": understanding and improving the experience of transferring palliative care inpatients to residential care.

Journal of Social Work in End-of-life & Palliative Care 2017, June 1, pp1-12

Voula Kallianis, Lynette Joubert, Sue Gorman, Sonia Posenelli, Carolyn Lethborg

The authors researched the effects on patients, families and the multidisciplinary healthcare team of transition from a specialist palliative care facility to residential care, identified the barriers relating to the move and highlighted opportunities to improve clinical practice in this area.

Palliative care for people with dementia in the terminal phase: a mixed-methods qualitative study to inform service development

BMC Palliative Care, 28th April 2017
Jenny T. van der Steen, Natashe Lemos Dekker, Marie-José H. E. Gijsberts, Laura H. Vermeulen, Margje M. Mahler and B. Anne-Mei The

The aim of this article was to understand what needs to be in place to develop optimal palliative care services for the terminal phase of dementia (so at the end of life, but not necessarily with advanced dementia), drawing on empirical evidence, experiential knowledge and case studies of service provision.

Fulltext available in  BMC Palliative Care

Quality standard: Care of dying adults in the last days of life

National Institute for Health and Care Excellence, March 2017

This quality standard covers the clinical care of adults (aged 18 and over) who are dying, during the last 2 to 3 days of life. It describes high-quality care in priority areas for improvement.

Importnat note: This quality standard does not cover care before the last few days of life, such as palliative care or ‘end of life care’ (often defined as care during the last year or so of a progressive disease), or care after death. These are included in NICE’s Quality Standard QS13 for end of life care for adults.

Follow this link for fulltext

A walk through bereavement theory

End of Life Journal, 2017, 6(1)
Isabel Dosser

The aim of this article is to give nurses and other health professionals an overview of some of the main bereavement theories which have developed over the last 50 years, enabling them to better understand the grief process and provide evidence-based support to patients and families.

Testamentary capacity and palliative care: helping patients implement estate planning

European Journal of Palliative Care, 2017, 24(2) 58-63
Kieran M Kennedy, Julien O’Riordan, Eileen Mannion and Sharon Beatty

This is the first in a new series offering practical advice to all members of the palliative care team on a range of legal and ethical issues. Here, the authors outline and discuss the appropriate ways of helping patients to implement estate planning by assessing, and maximising, their ability to make or change a valid will.

Available in print in the Arthur Rank Hospice Library, Cambridge

Psychological ideas in palliative care: attachment theory

European Journal of Palliative Care, 2017, 24 (1) 24-27
Jenny Strachan

This is the first in a series of articles that explores psychological concepts and translates them into practical advice to promote psychologically informed practice for people working in both clinical and non-clinical palliative care roles.  Here, the author suggests that care should be adapted to meet the needs of patients with different attachment styles and that attachment theory should be among the considerations of policy and process development.

Available in print in  the Arthur Rank Hospice Library, Cambridge

2016 Updated MASCC/ESMO consensus recommendations: Management of nausea and vomiting in advanced cancer

Supportive Care in Cancer, 2017, 25(1) 333-340

Walsh D.; Davis M.; Ripamonti C.; Bruera E.; Davies A.; Molassiotis A.

The aim of this paper was to develop a set of evidence-based guidelines for the management of different syndromes related to nausea and vomiting in advanced cancer.  The authors found that the level of evidence in most studies is low, but conclude that the drug of choice is metoclopramide, with alternative options including haloperidol, levomepromazine, or olanzapine. For bowel obstruction, the recommendation is to use octreotide given alongside an antiemetic (haloperidol) and where octreotide is not an option to use an anticholinergic antisecretory agent. For opioid-induced nausea and vomiting, no recommendation could be made. 

Fulltext available in  Supportive Care in Cancer

Evidence on the analgesic role of bisphosphonates and denosumab in the treatment of pain due to bone metastases: A systematic review within the European Association for Palliative Care guidelines project

Palliative Medicine, 2017, 31(1) 5-25
Porta-Sales, Josep; Garzón-Rodríguez, Cristina; Llorens-Torromé, Silvia; Brunelli, Cinzia; Pigni, Alessandra; Caraceni, Augusto

The aims of this review were to appraise the evidence for the efficacy and safety of biphosphonates and denosumab in controlling pain and the appropriate schedule of administration.  The authors found that the evidence to support an analgesic role is weak but that they do appear to be helpful in delaying the onset of bone pain. 

Fulltext available in Palliative Medicine

Available in print in the Arthur Rank Hospice Library, Cambridge

Economics of palliative and end of life care (special issue)

Palliative Medicine, 2017 31(4) 

This issue of Palliative Medicine contains a range of articles exploring various aspects of the economics of providing and funding palliative and end of life care.  Among the topics covered are:

• The use of Quality-Adjusted Life Years (QUALYs) in cost-effectiveness analyses in palliative care
• The contributions of family caregivers at end of life: a national post-bereavement census survey of cancer carers' hours of care and expenditures
• Costs of formal and informal care in the last year of life for patients in receipt of specialist palliative care

Fulltext available in Palliative Medicine

Available in print in the 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

Caregivers' perspectives on the use of long-term oxygen therapy for the treatment of refractory breathlessness: a qualitative study

Journal of Pain and Symptom Management, 2017, 53(1) 33-39

Collier, Aileen; Breaden, Katrina; Phillips, Jane L; Agar, Meera; Litster, Caroline; Currow, David C

The benefits of long-term oxygen therapy are often overestimated and its potential harms are underestimated.   The authors argue that caregivers should be provided with opportunities to collaborate with clinicians in evidence-based decision making and efforts should be made to provide them with information and education about the most effective pharmacological and nonpharmacological strategies to manage refractory breathlessness in a palliative care setting, including the appropriate use of LTOT, to enable them to do so.

Integrating supportive care principles into dialysis decision making: a primer for palliative medicine providers

Journal of Pain and Symptom Management, 2017, 53(3) 656-662

Moss, Alvin H

Because of their multiple comorbidities, high symptom burden, and limited life expectancy, CKD patients would benefit from the integration of supportive care principles into their routine care. This article addresses how supportive care specialists can collaborate with nephrology clinicians to provide patient-centered supportive care and identifies resources to assist them.

Systematic review and meta-analysis of acupuncture to reduce cancer-related pain

European Journal of Cancer Care, 2017,  26 (no. 2)

Chiu, H Y; Hsieh, Y J; Tsai, P S

From their review, the authors concluded that acupuncture is effective in relieving cancer-related pain, particularly malignancy-related and surgery-induced pain. Their findings suggest that acupuncture can be adopted as part of a multimodal approach for reducing cancer-related pain.

Supporting children and young people with Autism Spectrum Disorder through bereavement

Bereavement Care, 2016, 35(3) 94-101

Koehler, Katie

The author explores some of the underlying perceptual and processing difficulties observed in children with ASD that may affect their understanding of death and their reaction to a bereavement.  It suggests some approaches which may help children and includes a list of helpful resources.

Fulltext available in Bereavement Care

Available in print in Arthur Rank Hospice Library, Cambridge

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

Falls toolkit

Hospice UK, 2016

Hospice UK has updated its online toolkit aimed at managing and preventing falls.

https://www.hospiceuk.org/what-we-offer/clinical-and-care-support/clinical-resources

Education:Out-of-hours palliative care: what are the educational needs and preferences of general practitioners?

BMJ Supportive and Palliative Care, 2016, vol 30(3) 362-368
Claire Magee; Jonathan Koffman

This study examines the confidence of out-of-hours general practitioners (GPs) in symptom control and end of life prescribing, and identifies their educational needs and preferences in order to inform recommendations for future education.  The authors conclude that regular e-learning is favoured, but should be blended with other approaches that promote engagement including out-of-hours themed workshops and case discussion. They also suggest that specialist palliative care services should engage with out-of-hours providers to support education.

Full text available in BMJ Supportive and Palliative Care
Available in print in Arthur Rank Hospice, Cambridge

Pharmacovigilance in hospice and palliative care

BMJ Supportive and Palliative Care, 2016, vol 6(3) 

Two articles in this issue look at the net effects of drugs commonly used in palliative settings - pregablin for neuropathic pain and dexamethasone for anorexia.  They both stem from an international pharmacovigilance programme established to better understand how medications affect hospice/palliative care patients.  The aim in both cases is to add to the evidence base for the use of the drugs in these patients.
  
Full text available in  BMJ Supportive and Palliative care - Pregablin for nueropathic pain

Full text available in  BMJ Supportive and Palliative Care - Dexamethasone for anorexia

Available in print in Arthur Rank Hospice Library, Cambridge

Vitamin D and patients with palliative cancer

BMJ Supportive and Palliative Care, 2016, vol 30(3) 287-91
Linda Bjorkhem-Bergman; Peter Bergman

The authors of this review explore the role of vitamin D in the immune system and discuss its potential value in the palliative care of cancer patients. From the results of their own observational study and a case report they suggest that vitamin D supplementation has a beneficial effect on pain and well-being and could reduce susceptibility to infections.

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

Progesterone therapy for the treatment of non-cancer cachexia: a systematic review

BMJ Supportive and Palliative Care, 2016, vol 6(3) 276-86
Joanne K Taylor; Neil Pendleton

The selected studies collated results from 916 patients with HIV/AIDS, end-stage renal failure, chronic obstructive pulmonary disease (COPD) and geriatric cachexia.  The authors conclude that current evidence does not support the use of progesterone therapies for non-cancer cachexia. There may however be a limited role for its use as an appetite stimulant in a palliative context on a case-by-case basis.

Full text available in  BMJ Supportive and Palliative Care
Available in print in Arthur Rank Hospice, Cambridge

The bereavement experiences of lesbian, gay, bisexual and/or trans* people who have lost a partner: A systematic review, thematic synthesis and modelling of the literature

Palliative Medicine; Sep 2016; vol. 30(8) 730-744

Bristowe, Katherine; Marshall, Steve; Harding, Richard

The studies identified in this review described universal experiences of the pain of losing a partner; however, additional barriers and stressors were reported for lesbian, gay, bisexual and/or trans* people, including homophobia, failure to acknowledge the relationship, additional legal and financial issues and the 'shadow' of HIV or AIDS. A novel model was developed to explain how the experience for lesbian, gay, bisexual and/or trans* people is shaped by whether the relationship was disclosed and acknowledged in life and into bereavement and how this impacts upon needs and access to care. 

Full text available in  Palliative Medicine

Available in print in Arthur Rank Hospice Library. Cambridge