The difficulties of discharging hospice patients to care homes at the end of life: a focus group study

Palliative Medicine, 2018 32(7) p.1267-1274
Thomas, Tabitha; Clarke, Gemma; Barclay, Stephen

The aim of this study was to investigate the issues that arise when patients are transferred from hospice to care home at the end of life, from the perspective of the hospice multidisciplinary team. Difficulties identified included (1) ethical concerns (dilemmas around the decision, lack of patient autonomy and allocation of resources); (2) communication challenges; and (3) discrepancies between the ideals and realities of hospice palliative care. The authors suggest that further research is needed to understand patients' experiences concerning moving to care homes for end of life care in order that interventions can be implemented to mitigate patients' and families' distress.

The engagement of young people in their own advance care planning process: A systematic narrative synthesis

Palliative Medicine, 2018 32(7) p.1147-1166
Hughes, Ben; O'Brien, Mary R.; Flynn, Anita; Knighting, Katherine

With an increasing number of young people living with life-limiting conditions there is a need to understand how far young people are engaged in their own advance care planning in order to shape future practice and facilitate young people's wishes. The aim of this study was to identify and assess the current evidence to determine the barriers and facilitators to the engagement of young people in their own advance care planning process.

How might organisational institutionalism support the challenges of the modern hospice?

International Journal of Health Planning and Management, 2018, 28th June
E. Hodges; S. Read

The authors argue that the external environment within which UK charitable hospice care operates is changing. This paper outlines a number of environmental and influencing factors driving and impacting those changes. A model of institutional change is introduced, explored, and considered from the context of hospice. 

Dementia: assessment, management and support for people living with dementia and their carers. (Guideline)

National Institute for Health and Care Excellence (NICE)

June 2018

This guideline covers diagnosing and managing dementia (including Alzheimer’s disease). It aims to improve care by making recommendations on training staff and helping carers to support people living with dementia.  Section 1.10 makes recommendations for Palliative care.

Fulltext available on NICE website

Contemporary best practice in the management of malignant pleural effusion

Therapeutic Advances in Respiratory Disease 2018, 12: 1753466618785098

Coenraad F N Koegelenberg, Jane A Shaw, Elvis M Irusen, Y C Gary Lee

Malignant pleural effusion (MPE) affects more than 1 million people globally but there is a lack of evidence on the therapeutic approach to MPE, and, as a result, a high degree of variability in its management. This review aims to provide practicing clinicians with an overview of the current evidence on the management of MPE and to provide guidance on how to approach individual cases.

Fulltext available at Sage Publications

Laycarers can confidently prepare and administer subcutaneous injections for palliative care patients at home: A randomized controlled trial

Palliative Medicine, 2018 32(7)  p1208-1215
Healy, Sue; Israel, Fiona; Charles, Margaret; Reymond, Liz

This Australian study explored differences in laycarers' confidence in administering subcutaneous injections depending upon whether a laycarer, registered nurse or pharmacist prepared injections for subsequent administration by laycarers.  Results indicated that upskilled laycarers can confidently administer subcutaneous injections for loved ones, regardless of who prepares injections. This finding can improve patient outcomes and potentially decrease unwanted admissions to inpatient facilities.

A retrospective medical records review of risk factors for the development of respiratory tract secretions (death rattle) in the dying patient

Journal of Advanced Nursing, 2018 74(7)  p1639-1648
Kolb, Hildegard; Snowden, Austyn; Stevens, Elaine; Atherton, Iain

The identification of risk factors for the development of death rattle would allow for targeted interventions.  Two hundred consecutive medical records of mainly cancer patients who died in a hospice inpatient setting between 2009-2011 were reviewed. Fifteen potential risk factors were investigated.  The authors conclude that dying patients with a requirement for a high dose of Midazolam have an increased likelihood of developing death rattle.

Pressure injury progression and factors associated with different end-points in a home palliative care setting: a retrospective chart review study

Journal of Pain and Symptom Management, 2018 56(1)  p23-32
Artico, Marco; D'Angelo, Daniela; Piredda, Michela; et al

The authors of this study carried out in Italy conclude that pressure injury healing is a realistic aim in home palliative care, particularly for injuries not exceeding Stage II occurring at least two weeks before death. When assessing pressure injuries, their results highlight the need to also pay attention to artificial nutrition, continuous deep sedation, and the caregiver's role and gender.

Palliative sedation in terminal cancer patients admitted to hospice or home care programs: does the setting matter? Results from a national multicenter observational study

Journal of Pain and Symptom Management, 2018 56(1)  p33-43
Caraceni, Augusto; Speranza, Raffaella; Spoldi, Elio et al

The aim of this study was to compare palliative sedation rates in the hospice care and home care settings, patient clinical characteristics before and during palliative sedation, the decision-making process and clinical aspects of palliative sedation. 

Psychotherapy targeting depression and anxiety for use in palliative care: a meta-analysis

Journal of Palliative Medicine, 2018 21(7)  p1024-1037
Fulton, Jessica J.; Ramos, Katherine; Porter, Laura S.; Newins, Amie R.

This meta-analysis examined the effect of psychotherapy on depression and anxiety among individuals with any condition appropriate for palliative care. Overall, findings suggest that psychotherapy in palliative care populations reduced depression (large effect) and anxiety (small effect) symptoms. Psychotherapy also improved quality of life (small effect). Significant moderators of intervention effects included type of intervention and provider, number and length of treatment sessions, and sample age. Cognitive-behaviorally based and other therapies (e.g., acceptance, mindfulness) showed significant effects, as did interventions delivered by mental health providers. More treatment sessions were associated with greater effect sizes; longer sessions were associated with decreased effect sizes. 

Ten tips palliative care pharmacists want the palliative care team to know when caring for patients

Journal of Palliative Medicine, 2018 21(7) p 1017-1023
Uritsky, Tanya J.; Atayee, Rabia S.; Herndon, Christopher M.; Lockman, Kashelle; McPherson, Mary Lynn; Jones, Christopher A.

Pharmacists, experts in the nuances of medication management, are valuable resources and colleagues for palliative care providers. This article will offer 10 useful clinical pharmacy tips that PC pharmacists think all PC providers should know for safe and effective symptom management.

A checklist to a good transition

Together For Short Lives, February 2018
Julia Hodgson

Although designed for seriously ill young people to assess how well agencies involved in their education and care are working together to enable a smooth transition, "A checklist to a good transition" can also be a useful tool to guide person-centred discussions between professionals, young people and their family members. Professionals may find that the questions asked in the checklist are good prompts for conversations around transition and advance care planning.

Download the guide from the Together for Short Lives website

Pressure damage scanner has positive impact in hospice

June 2018

Nurses at the first hospice in the UK to trial a ground-breaking scanner designed to detect pressure damage say the device has helped them act sooner to stop ulcers developing and raises questions about the value of traditional skin assessments.

Read more here

People must make plans for their digital legacies (news)

E-Hospice, 5th June 2018

A survey carried out by a hospice in the West Midlands revealed that more than 40 per cent of people did not know what a digital legacy was, and of those that did, only 12 per cent had planned what to do with all or some of their legacy.

You can read more about the results and find out what a digital legacy is on the e-hospice website

Top ten tips palliative care clinicians should know when caring for patients with endometrial cancer

Journal of Palliative Medicine, 2018 21(6)  p857-861
Davidson, Brittany A.; Moss, Haley A.; Arquiette, Jaclyn; Kamal, Arif H.

Patients with locally advanced or metastatic disease that is not amenable to control with radiation and/or chemotherapy commonly present with disease-related symptoms. In this article, a team of gynecologic oncology and palliative care experts have assembled practical tips for the care of women with endometrial cancer. A "Top 10" format is used to highlight issues that may help palliative care physicians understand a patient's prognosis, address common misconceptions about endometrial cancer and improve the quality of shared decision making and goals of care discussions.

Therapeutic procedures for malignant ascites in a palliative care outpatient clinic

Journal of Palliative Medicine, 2018 21(6)  p836-841
Korpi, Säde; Salminen, Veera V.; Piili, Reetta P.; Paunu, Niina; Luukkaala, Tiina; Lehto, Juho T.

The optimal treatment of malignant ascites (MA) and feasibility of the management with free drainage remain unclear. The of this research was to study the success of drainage, complications, and survival after paracentesis or insertion of an indwelling tunneled catheter (TC) for the MA performed on a day-case basis. The authors suggest that free drainage of MA seems feasible in an outpatient clinic and that early insertion of TC should be considered to avoid repeated paracenteses. However, in patients with pancreatic cancer, paracentesis might be an accepted alternative due to their short life expectancy.

Efficacy, tolerability and acceptability of oxycodone for cancer-related pain in adults: an updated Cochrane systematic review

BMJ Supportive and Palliative Care, 2018 8(2)  p117-128
Schmidt-Hansen, Mia; Bennett, Michael I; Arnold, Stephanie; Bromham, Nathan; Hilgart, Jennifer S 

The authors of this updated Cochrane review conclude that oxycodone offers similar levels of pain relief and adverse events to other strong opioids. However, hallucinations occurred less with CR oxycodone than with CR morphine, but the quality of this evidence was very low, so this finding should be treated with utmost caution. Our conclusions are consistent with other reviews and suggest that oxycodone can be used first line as an alternative to morphine. However, because it is cheaper, morphine generally remains the first-line opioid of choice.

A critical appraisal of gabapentinoids for pain in cancer patients

Current Opinion in Supportive and Palliative Care, 2018 12(2) p108-117
Jordan, Roberta I; Mulvey, Matthew R; Bennett, Michael I

This review summarizes recent randomised controlled trials (RCTs) evaluating the use of gabapentinoids for tumour-related and treatment-related pain.  Many of the studies included were limited by small sample size, lack of blinding, and inadequate follow-up.  The authors therefore conclude that more and better quality studies are required but that gabapentinoids may offer benefits to cancer patients with pain, but that careful titration and monitoring of adverse effects is necessary.

Palliative sedation for existential suffering: a systematic review of argument-based ethics literature

Journal of Pain and Symptom Management, 2018 55(6) p1577-1590
Rodrigues, Paulo; Crokaert, Jasper; Gastmans, Chris

Using palliative sedation for controlling refractory existential suffering (PS-ES) is controversial. Complicating the debate is that definitions and terminology for existential suffering are unclear, ambiguous, and imprecise, leading to a lack of consensus for clinical practice.  The authors' analysis revealed mind-body dualism, existential suffering, refractoriness, terminal condition, and imminent death as relevant concepts in the ethical debate on PS-ES. The ethical principles of double effect, proportionality, and the four principles of biomedical ethics were used in the debate.

Developing and evaluating a course programme to enhance existential communication with cancer patients in general practice

Scandinavian Journal of Primary Health Care, 2018 36(2) p142-151

Hvidt, Elisabeth Assing; Ammentorp, Jette; Søndergaard, Jens; Timmermann, Connie; Hansen, Dorte Gilså; Hvidt, Niels Christian

Patients with cancer often desire to discuss existential concerns as part of clinical care but general practitioners (GPs) lack confidence when discussing existential issues in daily practice. The authors report that attending the course resulted in an increase in the participants' confidence in the ability to carry out existential communication. This study adds knowledge to how confidence in existential communication can be increased among GPs.

Fulltext available in Scandinavian Journal of Primary Health Care 

Framework for complexity in palliative care: A qualitative study with patients, family carers and professionals

Palliative Medicine, 2018, 32 (6), p 1078-1090
Pask, Sophie; Pinto, Cathryn; Bristowe, Katherine; et al

The aim is to explore palliative care stakeholders' views on what makes a patient more and less complex and insights on capturing complexity at patient level.

The value of rehabilitation medicine for patients receiving palliative care

American Journal of Hospice and Palliative Medicine; June 2018; 35 (6); p 889-896
Wittry, Sarah A; Ny-Ying Lam; McNalley, Thomas

The objective is to evaluate the scope and effectiveness of rehabilitation interventions and exercise programs in improving the quality of life and distressing symptoms in patients receiving palliative care. This test has proven that current available literature supports the use of these interventions, to improve fatigue, mood, functional independence, breathlessness and pain.

Missed opportunities: advance care planning report

Macmillan 2018

This report examines the role of ACP and explores the barriers to its implementation among people with incurable cancer as well as health social care professionals. It outlines the vital role advance care planning (ACP) can play in ensuring a dying persons wishes are met.

Download the document here

End of life care: a briefing paper

Institute of Public Policy Research, 2018

This briefing paper provides a brief summary of issues around end of life care, including an overview of evidence regarding the impact of location on quality and cost of care. It analyses the data on location and cost of care in England and how it compares at a national and international level. It also provides an analysis of the policy agenda in the UK and suggests key areas where improvements should be made.

Download from the IPPR website 

Providing comprehensive, person-centered assessment and support for family carers towards the end of life

Hospice UK, April 2018
Ewing, Gail; Grande, Gunn

A report that discusses that comprehensive person-centered support for family carers during end of life care requires whole-systems change within healthcare organisations. This document outlines the structures and processes that need to be in place to deliver such change in the form of 10 recommendations.

To download the document click here

Exploring the meaning and practice of self-care among palliative care nurses and doctors: a qualitative study

BMC Palliative Care; 2018, 17 (1),  63
Mills, Jason; Wand, Timothy; Fraser, Jennifer A

The aim of the present study was to explore the meaning and practice of self-care as described by palliative care nurses and doctors in Australia.  The findings provide a detailed account of the context and complexity of effective self-care practice previously lacking in the literature. 

Fulltext available in BMC Palliative Care

Palliative care for homeless people: a systematic review of the concerns, care needs and preferences, and the barriers and facilitators for providing palliative care

BMC Palliative Care; 2018, 17 (1) 67
Klop, Hanna T; de Veer, Anke J E; van Dongen, Sophie I; Francke, Anneke L; Rietjens, Judith A C; Onwuteaka-Philipsen, Bregje D

This systematic review aims to summarize evidence about the concerns, palliative care needs and preferences of homeless people, as well as barriers and facilitators for delivering high quality palliative care.

Fulltext available in BMC Palliative Care

Family carers' experiences of coping with the deaths of adults in home settings: A narrative analysis of carers' relevant background worries

Palliative Medicine; 2018, 32 (5), 950-959
Thomas, Carol; Turner, Mary; Payne, Sheila; et al

The aim of this qualitative cross-sectional observational study was to illustrate the relevance of 'relevant background worries' in family carers' accounts of caring at home for a dying adult.  Four case studies are presented where the worries constituted psychosocial factors that impacted on caregivers' actions and emotional well-being. Two themes are discussed: (1) whether relevant background worries are important enough to be identified and responded to and (2) how such worries could be picked up and managed by professionals. It is argued that the quality of clinical practice could be improved if specialist palliative care teams in community contexts both identified and responded to significant support needs associated with family carers' relevant background worries.

Tactile massage reduces rescue doses for pain and anxiety: an observational study

BMJ Supportive & Palliative Care; 2018, 8(1) 30-33
Pedersen, Karina; Björkhem-Bergman, Linda

This was an observational study at a hospice ward in Sweden in which forty-one palliative patients were offered TM, at an average of three treatments per patient.  Before and after every treatment, self-assessed pain, well-being and anxiety according to the Edmonton Symptom Assessment Scale (0-10) were recorded.  The authors report that TM reduced the need for administration of rescue doses for pain and anxiety and improved well-being, although they suggest larger randomised studies with parallel control groups are needed to confirm the findings.

Available in print in Arthur Rank Hospice Library, Cambridge

Persistent inequalities in Hospice at Home provision

BMJ Supportive & Palliative Care; February 2018
Buck, Jackie; Webb, Liz; Moth, Lorraine; Morgan, Lynn; Barclay, Stephen

The aim of this study was to describe the nature and scope of a new Hospice at Home (H@H) service and to identify its equality of provision.  Results showed that demand outstripped supply with twice as many night care episodes requested as were provided. Inequalities in access to the service related to underlying diagnosis and socioeconomic status.  The authors conclude that there is significant unmet need and potentially large latent demand for the H@H service. 

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

Integrating palliative care into neurology services: what do the professionals say?

BMJ Supportive & Palliative Care, 2018, 8 (1) 41-44
Hepgul, Nilay; Gao, Wei; Evans, Catherine J; et al

Here the authors present survey results describing the current levels of collaboration between neurology and palliative care services and exploring the views of professionals towards a new short-term integrated palliative care service (SIPC).  They suggest their results demonstrate the opportunity to increase collaboration between the services for people with progressive neurological conditions, and the acceptability of SIPC as a model to support this.

Prevalence of hyponatremia in inpatients with incurable and life-limiting diseases and its association with physical symptoms-a retrospective descriptive study

Supportive Care in Cancer; 2018, 26 (1) 213-222
Kremeike, Kerstin; Wetter, Ricarda; Voltz, Raymond; et al

This study aims to describe the prevalence of hyponatremia, associated symptoms, and symptom intensity in inpatients with hyponatremia receiving specialist palliative care (SPC).  More than one third of all SPC patients showed a hyponatremia, and the hyponatremia grade was associated with symptom burden and symptom intensity. 

Patient-centred goal setting in a hospice: a comparative case study of how health practitioners understand and use goal setting in practice

International Journal of Palliative Nursing;  2018, 24 (3) 115-122
Boa, Sally; Duncan, Edward; Haraldsdottir, Erna; Wyke, Sally

This was a comparative case study of 10 healthcare practitioners in one hospice in Scotland.  From the results, the authors note that goal setting focused around what was seen as important from the health practitioner's perspective, rather than being patient-centred. They concluded that a more explicit, person-centred goal setting process may support practitioners more consistently in helping patients to identify their priorities and enhance their quality of life.

My future wishes: Advance Care Planning (ACP) for people with dementia in all care settings

NHS England, 2018 This document aims to assist practitioners, providers and health and social care commissioners create opportunities for people living with dementia to develop an Advance Care Plan. Please note the any changes that are made to this document in the future will be completed on the digital copy which can be found here:

NHS England - My future wishes

palliativedrugs.com

BMJ Supportive & Palliative Care; Mar 2018; vol. 8 (no. 1); p. 21-24

Wilcock, Andrew; Charlesworth, Sarah

This feature in the journal provides a selection of items that have featured in the News and Latest additions section of the website in recent months.

Register on the palliativedrugs.com website for more information and to receive updates.

Available in print in Arthur Rank Hospice Library, Cambridge

Developing design principles for a Virtual Hospice: improving access to care

BMJ Supportive & Palliative Care; Mar 2018; vol. 8 (no. 1); p. 53-57
Taylor, Andrea; French, Tara; Raman, Sneha

This paper presents early-stage design work on a Virtual Hospice to improve access to services provided by Highland Hospice serving a largely remote and rural population in Scotland. A number of themes and barriers to accessing the Hospice's services were identified and, in response, an initial set of seven design principles was developed to improve prioritisation and decision making by ensuring alignment with research insights. It is suggested that this approach could be applied by other hospices facing similar challenges on delivering services in remote and rural settings.

Available in print in Arthur Rank Hospice Library, Cambridge

Management of hiccups in palliative care patients

BMJ Supportive & Palliative Care; Mar 2018; vol. 8 (no. 1); p. 1-6
Jeon, Yong Suk; Kearney, Alison Mary; Baker, Peter Graham

This article provides an evidence-based approach overview of the causes and treatment of this debilitating condition for such patients, with a management algorithm.

Available in print in Arthur Rank Hospice Library, Cambridge

Why is Meaning-Centered Group Psychotherapy (MCGP) effective? Enhanced sense of meaning as the mechanism of change for advanced cancer patients

Psycho-oncology; Feb 2018; vol. 27 (no. 2); p. 654-660
Rosenfeld, Barry; Cham, Heining; Pessin, Hayley; Breitbart, William

The authors of this study looked at the data from two randomised controlled trials to advance understanding of the effectiveness of MCGP.  They suggest the findings support MCGP as a way of enhancing a sense of meaning which improves quality of life and decreases psychological distress.

Palliative care in dementia

Palliative Medicine; March 2018

This special issue of Palliative Medicine includes research aimed at increasing knowledge in the field of dementia. Included are both quantitative and qualitative studies that demonstrate sophisticated methodology and include at least one negative trial (Boogaard et al.2) because it's important to know what works and what does not. It includes the following topics:

• The effect of two feedback strategies on perceived quality of end-of-life care and comfort in dying nursing home residents with dementia.
• Effects on pain of a stepwise multidisciplinary intervention (STA OP!) that targets pain and behavior
• How palliative care is understood in the context of dementia

View the full contents in Palliative Medicine

Palliative care for those with neurological diseases

Palliative Medicine April 2018 32(4)

This special issue of Palliative Medicine includes research aimed at increasing knowledge in the field of neurological diseases.  It includes the following topics:

• Interventions for informal caregivers of people with motor neurone disease
• Views about assisted dying of people with Huntingdon's disease
• Palliative care triggers in progressive neurodegenerative conditions