Psychological ideas in palliative care: behaviour change

European Journal of Palliative Care; 2017 24(6) p. 260-265
Strachan, Jenny

There is little written about behaviour change in palliative care settings. In this article Jenny Strachan examines how encouraging patients to change certain types of behaviour – such as non-compliance with medicines, persistent reassurance seeking and strain in family relationships – comes down to understanding and adjusting the relationship between the behaviour and its reinforcers.

Fulltext available in European Journal of Palliative Care
Available in print in Arthur Rank Hospice Library, Cambridge

What do patients with cancer and their families value most at the end of life? A critical analysis of advance care planning

International Journal of Palliative Nursing;  2017 23(12) p. 596-604
Johnson, Stephanie B; Butow, Phyllis N; Kerridge, Ian; Tattersall, Martin Hn

The findings from this study suggest that models of ACP which are constructed around patients' 'rights' to determine what happens to their bodies may do little to enhance the quality of EoL care, as patients value veracity, trust and comfort at the EoL more than autonomy. Quality EoL care should focus on paying increased attention to the relational and social aspects of care.

'A strange kind of balance': inpatient hospice volunteers' views on role preparation and training

Progress in Palliative Care; 2017 25(6) p. 279-285
Dean, Antonia; Willis, Susan

In the UK, there have been calls for the development of a core curriculum for hospice volunteers but debate exists around the potential for unnecessary 'professionalization' of volunteers. This qualitative, focus group study explores the views of UK inpatient hospice volunteers regarding initial training for role preparation. This study will inform local practice, shaping the education and support of future volunteers, and adds to the wider evidence-base surrounding the development of this crucial group within the hospice workforce.

Fulltext available in Progress in Palliative Care

Available in print in Arthur Rank Hospice Library, Cambridge

Fear in palliative care

Progress in Palliative Care; 2017 25(6) p 273-278
Macleod, A. D.

In this article the author discusses the difference between fear and anxiety and considers the limited literature on the management of fear in terminally ill patients. 

Fulltext available in Progress in Palliative Care
Available in print in Arthur Rank Hospice Library, Cambridge

Hidden losses and ‘forgotten’ suffering: the bereavement experiences of British Romany Gypsies and Travellers

Bereavement Care; Dec 2017; 36(3) p94-102
Rogers, Carol; Greenfields, Margaret

This paper presents a narrative review of the literature illustrated by quotes from a from a recently completed study that examines the bereavement support needs of Gypsies and Travellers and best practice for organisations seeking to support these ‘hard to reach’ populations.

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

Journal of Social Work in End-of-Life and Palliative Care; 2017 13(2-3) p193-204
Kallianis, Voula; Joubert, Lynette; Gorman, Sue; Posenelli, Sonia; Lethborg, Carolyn

When a patient no longer requires specialist palliative care services, transfer from an inpatient palliative care facility to residential care may be necessary. This research explored the impact of this transition on the patient and their families and on the interdisciplinary health care team treating the patient and makes recommendations for best managing the transition. 

Family Anticipatory Grief: An Integrative Literature Review

American Journal of Hospice and Palliative Medicine,  September 2017, 34(8) 774-85

Coelho A, Barbosa A.

Uncertainty persists in anticipatory grief (AG) literature, concerning its definition and basic characteristics. This review synthesizes recent research in order to develop further knowledge about the family experience of AG during a patient's end of life.  Ten themes were identified, which correspond to AG nuclear characteristics, contributing to a deeper conceptualization of the term and to a more sensitive clinical practice.

The good of gardening: cultivating wellbeing at home and in hospices

Marie Curie, October 2017

A new joint campaign between Marie Curie, the UK’s leading terminal illness charity, and the National Garden Scheme, launches this week. The campaign, ‘The Good of Gardening’, aims to highlight the therapeutic potential of gardening for people living with terminal illnesses, and their families.

It follows a report published last year by the King’s Fund, and commissioned by the National Garden Scheme, that summarised research evidence linking gardens and gardening to a range of physical and psychological wellbeing benefits.

The good of gardening - cultivating wellbeing at home and in hospices

Sexual well-being in cancer and palliative care: an assessment of healthcare professionals' current practice and training needs

BMJ supportive & palliative care; Sep 2017; 7(3) 251-54

Gleeson, Aoife; Hazell, Emily

This study aimed to identify the current practice of healthcare professionals working with cancer and palliative care patients in Wales in relation to sexual well-being and to ascertain their need for training.

Fulltext available in BMJ Supportive and Palliative Care

Available in print in Arthur Rank Hospice Library, Cambridge

Improving malodour management in advanced cancer: a 10-year retrospective study of topical, oral and maintenance metronidazole

BMJ supportive & palliative care; Sep 2017; vol. 7 (no. 3); p. 286-291

George, Reena; Prasoona, Thotampuri Shanthi; Kandasamy, Ramu; Cherian, Renitha; Celine, Thangarathi; Jeba, Jenifer; Murali, Shakila; Mathew, David

Following a case note review of 179 patients examining the relative effectiveness of topical or oral metronidazole used for malodour in necrotic cancers, the authors suggest that their data support formulary guidelines recommending maintenance metronidazole for recurrent malodour.  They propose a protocol for metronidazole usage in managing malodour.

Fulltext available in BMJ Supportive and Palliative Care 

Available in print in Arthur Rank Hospice Library, Cambridge

The mourning process of older people with dementia who lost their spouse

Journal of Advanced Nursing; Sep 2017; 73(9) 2143-2155

Watanabe, Akiko; Suwa, Sayuri

In this study, the authors aimed to explore the mourning process of people with dementia who have lost their spouse using family caregivers' and professionals' perspectives and devise grief care for people with dementia.

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

A meta-analysis of the effectiveness and safety of kinesiology taping in the management of cancer-related lymphoedema

European Journal of Cancer Care; Sep 2017; 26(5)

Gatt, M; Willis, S; Leuschner, S

This review aims to determine the effectiveness and safety of kinesiotaping (KT) in the management of CRL compared to compression bandaging or hosiery.  

Pharmacology of cough in palliative care

Current opinion in supportive and palliative care; Sep 2017; 11(3);147-151

Morice, Alyn H; Shanks, Gabriella

The purpose of the review is to assess the current evidence relating to the pharmacological management of cough. Its findings will aid practitioners' understanding of cough in a variety of settings, including palliative care.

Palliative and end-of-life care for adults with advanced chronic obstructive pulmonary disease: a rapid review focusing on patient and family caregiver perspectives

Current opinion in supportive and palliative care; Dec 2017; vol. 11 (no. 4); p. 315-327 Mathews, Gillian; Johnston, Bridget

The review identified areas of unmet need across physical, psychosocial and spiritual domains, particularly in relation to appropriate and timely conversations.  There have been positive developments in the care and treatment of COPD and some evidence about the use of technology in end-stage COPD.

Evaluation of a low-light intervention - starlight therapy - for agitation, anxiety, restlessness, sleep disturbances, dyspnea, and pain at end of life

Journal of Hospice and Palliative Nursing; Jun 2017; vol. 19 (no. 3); p. 214-220

Emerson, Kathleen; Murphy, Mary; Quinlin, Linda; O'Malley, Patricia; Hayes, Kathleen

This research was conducted in Ohio and assessed the effectiveness of Starlight Therapy in treating the negative symptoms associated with end of life.  The study of 40 patients found the Starlight Therapy effective in treating the symptoms of anxiety, agitation, dyspnea, insomnia, and pain in 90% of the patients within a 30-minute period. 

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

Physiotherapy programme reduces fatigue in patients with advanced cancer receiving palliative care: randomized controlled trial

Supportive Care in Cancer; Sep 2017; 25(9) 2899-2908

Pyszora, Anna; Budzyński, Jacek; Wójcik, Agnieszka; Prokop, Anna; Krajnik, Małgorzata; Budzyński, Jacek; Wójcik, Agnieszka; Krajnik, Małgorzata

This trial involved 60 patients. The physiotherapy programme included active exercises, myofascial release and PNF techniques and was found to have beneficial effects on cancer related fatigue and other symptoms in patients with advanced cancer who received palliative care. The authors conclude that the results  suggest physiotherapy is a safe and effective method of CRF management.

A systematic review of religious beliefs about major end-of-life issues in the five major world religions

Supportive and Palliative Care 2017 15(5) 609-22

Rajshekhar Chakraborty, Areej R. El-Jawahri, Mark R. Litzow, Karen L Syrjala, Aric D. Parnes, Shahrukh K. Hashmi

The objective of this study was to examine the religious/spiritual beliefs of followers of the five major world religions (Christianity, Islam, Hinduism, Buddhism and Judaism) about frequently encountered medical situations at the end of life (EoL).

Fulltext available in  Supportive and Palliative Care

Music therapy for palliative care: A realist review

Supportive and Palliative Care 2017 15(4) 454-64

Tracey McConnell, Sam Porter

The authors wanted to explore how music therapy benefits patients receiving palliative care and the barriers and facilitators to its implementation.  They found that it may be an effective non-pharmacological aid to managing distressing physical, psychological, emotional and spiritual symptoms.   They also identified the contexts in which music therapy was successfully introduced.  

Fulltext available in  Palliative and Supportive Care

Safe use of subcutaneous diphenhydramine in the inpatient hospice unit

American Journal of Hospice and Palliative Medicine, 2017 34(10) p954-957

Chen A1, Loquias EJ1, Roshan R, Levene R, Zelhof R, Hickey T, Cooney GA, Gonzalez F.

Although commonly administered in an impatient setting via the subcutaneous (SC) route, outside the hospice setting subcutaneous DPH has not been widely used, primarily because of a handful of case reports published in the 1990s that report skin necrosis following subcutaneous administration of DPH for local anesthesia. 

In this study a total of 648 diphenhydramine subcutaneous injections were administered in 109 individual patients. None of the patients were reported to have an adverse cutaneous reaction. The authors suggest that this review demonstrates that subcutaneous diphenhydramine injection is a safe alternative to oral and other parenteral routes, and may be particularly valuable in terminally ill patients, who are often unable to swallow and are without IV access.

Palliative care in interstitial lung disease: living well

The Lancet Respiratory Medicine, 12 October 2017 Professor Michael Kreuter, et al This review discusses the urgent need for the involvement of palliative care in all stages of interstitial lung disease, the specific problems that require palliative intervention, when it should be initiated, obstacles to effective palliative care and research priorities. Palliative care in interstitial lung disease: living well

The state of hospice services in England 2014 to 2017

Care Quality Commission, 2017

This report presents the findings from CQC’s initial programme of comprehensive inspections of hospice services.

Hospice care across England has the highest percentage of health and social care services that are rated outstanding (25%), and a further 70% are rated good. However, there is more to be done to make sure that everyone can access high-quality end of life care, as it was noted services to some groups was variable and that the needs of these people were not always considered and understood.

The state of hospice services in England 2014 to 2017 

One year on: the government response to the review of choice in end of life care

Department of Health, 21st September 2017 This report sets out the progress the national end of life care programme board has made in implementing the government’s choice commitment. Access the report here

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