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

Development of a question prompt sheet for cancer patients receiving outpatient palliative care

Journal of Palliative Medicine; Aug 2016; vol. 19(8) 883-887

Arthur, Joseph; Yennurajalingam, Sriram; Williams, Janet; Tanco, Kimberson; Liu, Diane; Stephen, Saneese; Bruera, Eduardo

A question prompt sheet has been shown to improve doctor/patient communication during consultations. The aim of this study was to develop a single-page consensus list of prompt questions for use by patients attending outpatient palliative care. An expert group of experienced physicians and mid-level providers were invited to participate in the study conducted in three Delphi rounds. From this, a 25-item, single-page QPS was developed for use by patients attending outpatient palliative care.

The effect of 5 minutes of mindful breathing to the perception of distress and physiological responses in palliative care cancer patients: a randomized controlled study

Journal of Palliative Medicine; Sep 2016; vol. 19(9) 917-924

Ng, Chong Guan; Lai, Kiah Tian; Tan, Seng Beng; Sulaiman, Ahmad Hatim; Zainal, Nor Zuraida

This is a randomized controlled trial involving sixty palliative cancer patients. They were randomly assigned to either 5 minutes of mindful breathing or normal listening arms. There was significant reduction of perceived distress, blood pressure, pulse rate, breathing rate, and galvanic skin response; also, significant increment of skin surface temperature in the 5-minute MB group. The changes in the 5-minute breathing group were significantly higher than the normal listening group. The authors conclude that five-minute MB is a quick, easy to administer, and effective therapy for rapid reduction of distress in palliative setting.

Multidimensional symptom clusters: an exploratory factor analysis in advanced chronic kidney disease

Journal of Advanced Nursing; Oct 2016; vol. 72(10) 2389-2400

Almutary, Hayfa; Douglas, Clint; Bonner, Ann

436 people with stage 4 and 5 chronic kidney disease were recruited to explore the existence of symptom clusters in advanced chronic kidney disease. . Five symptom clusters were consistently identified across all symptom dimensions, with clusters ranging from 2-10 symptoms. Adopting a symptom cluster approach has the potential to significantly advance symptom assessment and nursing care for people in advanced stages of chronic kidney disease.

Developing a policy to empower informal carers to administer subcutaneous medication in community palliative care; a feasibility project

International journal of palliative nursing; Aug 2016; vol. 22(8) 369-378

Lee, Louise; Howard, Kay; Wilkinson, Lyn; Kern, Cheryl; Hall, Sarah

This article describes the development and implementation of a policy to support community professionals to train informal carers to give, 'as required ', subcutaneous medications to their relative. From the small numbers audited it could be suggested that if the process is well managed and the informal carers feel supported they can safely and effectively administer subcutaneous injections in community palliative care. 

Available in print in Arthur Rank Hospice Library, Brookfields Hospital

Thromboembolic disease and breathlessness

Current opinion in supportive and palliative care; Sep 2016; vol. 10(3) 249-255

Noble, Simon

The management of venous thromboembolism remains challenging because the clinical trials informing practice recruited patients that are largely unrepresentative of the advanced disease populations. Recent years have seen several developments in the management of VTE including new oral anticoagulants, an appreciation of the patient's experience of VTE, and the importance of considering other comorbidities in ensuring an individualized approach to VTE treatment. This study reviews the challenges of VTE management within supportive and palliative care.

'I am actually doing something to keep well. That feels really good': Experiences of exercise within hospice care

Progress in Palliative Care; Jul 2016; vol. 24(4) 204-212

Turner K.; Tookman A.; Bristowe K.; Maddocks M.

This qualitative study explored patients' experiences of an exercise programme within a palliative care setting, with the interviews focusing on the perceived impact on all aspects of quality of life. Patients reported an awareness of the positive physical, psychological, and social consequences of exercising. Their experiences reflected on all dimensions of quality of life, the impact of others and the sense of meaning gained through participation in exercise. 

Full text available in Progress in Palliative Care

Available in print in Arthur Rank Hospice Library, Brookfields Hospital

Service delivery of complex interventions for refractory breathlessness

Current opinion in supportive and palliative care; Sep 2016; vol. 103) 228-235

Booth, Sara; Ryan, Richella; Spathis, Anna

The review considers the evidence for different service models existing for helping people manage the chronic, irreversible breathlessness that accompanies advanced disease. Randomized controlled trial evidence confirms that a complex intervention for breathlessness can improve quality of life, reduce symptom impact, and support carers. Some preliminary data suggest prognosis improvement in some people. Integrated care is needed for both rapidly progressive disease, where death is inevitable, and chronic illness, when health improvement is possible.

Withholding versus withdrawing treatment: artificial nutrition and hydration as a model

Current opinion in supportive and palliative care; Sep 2016; vol. 10(3) 208-213

Somers, Emma; Grey, Carl; Satkoske, Valerie

This article explores various cultural perspectives of withholding and withdrawing of life-sustaining treatment utilizing a case involving artificial nutrition and hydration (ANH) to guide ethical discussion. Recent literature challenges the evidence base that feeding tubes for people with advanced dementia lead to significant harm. In light of these new findings, the authors reconsider end-of-life decision making that concerns ANH to determine whether these new findings undermine previous ethical arguments and to consider how to best educate and support patients and families during the decision-making process. 

The pathophysiology of pruritus - a review for clinicians

Progress in Palliative Care; May 2016; vol. 24(3); 133-146

Brennan F.

Pruritus is a troubling and occasionally disabling symptom. This review synthesizes the current understanding of the mechanism of pruritus and argues that a well-informed knowledge of pathophysiology is necessary to both illuminate this area of clinical practice and enhance strategies of management.

Full text available in Progress in Palliative Care

Available in print in Arthur Rank Hospice Library, Brookfields Hospital

Compromised autonomy: when families pressure patients to change their wishes

Journal of Hospice and Palliative Nursing, Aug 2016, vol. 18, no. 4, p. 284-289

Blackler, Liz

When patients are unduly pressured by their families to make medical decisions that are not in line with previously held values, beliefs, or perspectives, autonomy is compromised. Decision making in the context of family involvement and relational autonomy will be explored along with effects of caregiver stressors, patient/family disagreements, and the nuances of substituted judgment. The article also discusses strategies for best working with and advocating for patients who are experiencing compromised autonomy.

Spiritual beliefs, practices, and needs at the end of life: Results from a New Zealand national hospice study

Palliative and Supportive Care, 2016, 30th August

Richard Egan, Rod MacLeod, Chrystal Jaye, Rob McGee, Joanne Baxter, Peter Herbison, Sarah Wood

The authors report the results of a project to investigate people's understanding of spirituality and spiritual care practices in New Zealand hospices.  Participants included patients, family members and staff.  They found that spirituality is broadly understood and considered important for all three of the populations studied. The patient and family populations had high spiritual needs that included a search for meaning, peace of mind, and a degree of certainty in an uncertain world. The healthcare professionals in the hospices surveyed seldom explicitly met the needs of patients and families. Staff had spiritual needs, but organizational support was sometimes lacking in attending to these needs.

Full text available in Palliative and Supportive Care

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

Palliative Medicine, 2016, August 26th

Marina Martínez, María Arantzamendi, Alazne Belar, José Miguel Carrasco, Ana Carvajal, María Rullán, Carlos Centeno

Dignity therapy is psychotherapy to relieve psychological and existential distress in patients at the end of life.  The evidence from this review suggests that dignity therapy is beneficial. One randomized controlled trial with patients with high levels of psychological distress shows DT efficacy in anxiety and depression scores. Other design studies report beneficial outcomes in terms of end-of-life experience. Further research should understand how dignity therapy functions to establish a means for measuring its impact and assessing whether high level of distress patients can benefit most from this therapy.

  

Full text available in Palliative Medicine

Available in print in Arthur Rank Hospice Library, Brookfields Hospital

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