What role do death doulas play in end-of-life care? A systematic review

Health and Social Care in the Community, 2018, September 26th

Deb Rawlings; Jennifer Tieman; Lauren Miller-Lewis; Kate Swetenham

A systematic review was conducted to explore the role and potential implications for models of care delivery. Included were articles that describe the role/work of a death doula or a death midwife in the context of end-of-life care, or death and dying. 

Fulltext available in Health and Social Care in the Community

Beyond the bucket list: unfinished business among advanced cancer patients

Psycho-oncology, 2018 27(11) p.2573-2580

Masterson M.P.; Slivjak E.; Breitbart W.; et al

This study aimed to examine the prevalence and common themes of unfinished business (UB) and its associations with distress among advanced cancer patients. The authors conclude that unfinished business was both prevalent and distressing in their sample and that their findings underscore the need to develop and implement interventions designed to help patients resolve or find solace with UB.

Fulltext available in  Psycho-oncology

Instruments to evaluate complexity in end-of-life care

Current Opinion in Supportive and Palliative Care, 2018 12(4) p. 480-88

Martin-Rosello, Maria Luisa; Sanz-Amores, Maria Reyes; Salvador-Comino, Maria Rosa

This review presents the state of art of the role of complexity in specialist palliative care provision. Complexity science, complexity frameworks, as well as tools evaluating complexity in palliative care are described.

Top ten tips palliative care clinicians should know about parkinson's disease and related disorders

Journal of Palliative Medicine, 2018 21(10)  p.1507-1517
Katz, Maya; Galifianakis, Nicholas B.; Goto, Yuika; et al

A team of Parkinson's Disease and Palliative Care experts assemble practical tips for the care of people with PD. The "Top 10" format emphasizes the most relevant issues to enable PC clinicians to provide optimal care for those suffering with this complex neurodegenerative disease.

Cultural factors influencing advance care planning in progressive, incurable disease: a systematic review with narrative synthesis.

Journal of Pain and Symptom Management, 2018 56(4) p.613-636

McDermott, Ella; Selman, Lucy Ellen

Low uptake of advance care planning indicates it is less acceptable to patients of some cultural backgrounds. The objectives of this study were to explore how cultural factors influence ACP for patients with progressive, incurable disease and how ACP might be made cross-culturally appropriate.

Benzodiazepines for agitation in patients with delirium: selecting the right patient, right time, and right indication

Current Opinion in Supportive and Palliative Care, 2018 12(4) p.489-94

Hui, David

This review provides an evidence-based synopsis on the role of benzodiazepines in patients with agitated delirium.

Complementary and Alternative Medicine in hospice and palliative Care: a systematic review

Journal of Pain and Symptom Management, 2018 56(5) p.781-94

Zeng, Yvette S; Wang, Connie; Ward, Kristina E; Hume, Anne L

The objectives of this study were to evaluate the available evidence on the use of complementary or alternative medicine (CAM) in hospice and palliative care and to summarize their potential benefits. Therapies included acupressure, acupuncture, aromatherapy massage, breathing, hypnotherapy, massage, meditation, music therapy, reflexology, and reiki.

Top ten tips for palliative care clinicians caring for heart failure patients

Journal of Palliative Medicine, 2018 21(11) p.1646-1650
Warraich, Haider Javed; Rogers, Joseph G.; Dunlay, Shannon M.; Hummel, Ellen; Mentz, Robert J.

Continuing the 'Top Ten Tips' series, a team of experts provide high-yield tips to address challenges faced by palliative care clinicians in the management of patients with heart failure.

An Admiral Nursing and hospice partnership in end-of-life care: innovative practice

Dementia, 2018 October 22
Karen Harrison Dening, Jaqueline Crowther, Sadaf Adnan

In partnership with Dementia UK Kirkwood Hospice in West Yorkshire embarked upon a two-year pilot to introduce the first end-of-life care Admiral Nurse to their Specialist Community Palliative Care Team to identify and support people with dementia who required palliative and end-of-life care. This paper describes and discusses this innovative partnership and outcomes from year one evaluation and sets out its future plans.

Allow natural death versus do-not-resuscitate: titles, information contents, outcomes, and the considerations related to do-not-resuscitate decision

BMC Palliative Care 2018, 17:114 | Published on: 10 October 2018 

Sheng-Yu Fan, Ying-Wei Wang and I-Mei Lin

The aims of this study were to explore: (1) how “allow a natural death” versus “do not resuscitate” and specific scenarios and outcomes, influence the willingness to sign a DNR order; and (2) the information needs and consideration of the DNR decisions, and the benefits and barriers of the DNR discussion, in the general population.

Fulltext available in BMC Palliative Care

Hope tree: an interactive art installation to facilitate the expression of hope in a hospice setting

American Journal of Hospice & Palliative Medicine, 2018 35(10) p.1273-1279
Collins, Andrew; Bhathal, Darpanjot; Field, Tara; Larlee, Randene; Paje, Rachael; Young, Daneen

Patients can continue to have hope or be hopeful, even in the face of a terminal illness. In this paper the authors address the question 'Can participation in a creative writing practice improve the expression of hope in a hospice setting?' Each expressed hope placed on the "Hope Tree" was independently coded by all research team members utilizing inductive content analysis. Eight major themes emerged from the data: "Peace," "Dreams," "Total well-being," "Acknowledgment of loss," "Relationships," "Hospice care," "Spirituality," and "Dichotomies." It was concluded that the Hope Tree is a creative art project that can be used within a hospice environment to promote hope among family members and the health-care professionals who care for patients.

The ‘good death’ and reduced capacity: a literature review

Mortality; Nov 2018; vol. 23 (no. 4); p. 381-395
Read, Simon; MacBride-Stewart, Sara

This review explores the themes that contribute to a good death, specifically examining their applicability to those who lack mental capacity to make their own decisions. Largely the literature on a ‘good death’ builds on an underlying assumption that the dying patient is cognisant and capable of rationalising their death. The authors suggest that specific consideration is required on how to achieve a ‘good death’ for those with reduced capacity.

On healing and palliative care

European Journal of Palliative Care, 2018 25(3)  p.134-137

Lucas, Viv

Modern medicine has become so entrenched with the requirement for evidence, skills, competencies, outcomes and conformity that the concept of healing has been almost entirely forgotten. Viv Lucas investigates healing and what it means both as a concept generally and to palliative care specifically.

Fulltext available in European Journal of Palliative Care

Available in print in Arthur Rank Hospice, Cambridge

Psychological ideas in palliative care: distress, adjustment and coping

European Journal of Palliative Care, 2018 25(3) p.120-124
Strachan, Jenny; Clark, Lucy

Many patients, family and staff use the word ‘traumatic’ when discussing end-of-life experiences. As with many terms considered in this series, ‘trauma’ and ‘traumatised’ mean something more specific in a clinical sense than they do in common usage. The authors consider what it means to be traumatised, and how the condition might be recognised and managed in a palliative care setting?

Fulltext available in European Journal of Palliative Care

Available in print in Arthur Rank Hospice Library, Cambridge

Creating a legacy -- a tool to support end-of-life patients

European Journal of Palliative Care, 2018 25(3)  p.116-119
Vidal, Carolina; Gonçalves, Ana Luísa; Pavoeiro, Marta

Beside the psychological impact, there is increasing evidence that creating a legacy alleviates physical symptoms.  In this paper, the authors explore the concept  and creation of legacy, explaining the physical and spiritual benefits for both patients and their carers/families.

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

Music therapy in UK palliative and end-of-life care: a service evaluation

BMJ supportive & palliative care; Sep 2018; vol. 8 (no. 3); p. 282-284
Graham-Wisener, Lisa; Watts, Grace; Kirkwood, Jenny; Harrison, Craig; McEwan, Joan; Porter, Sam; Reid, Joanne; McConnell, Tracey Helena

This service evaluation aims to identify the provision, role and perceived impact of UK music therapists in supporting patients receiving palliative and end of life care (PEOLC), their families and health and social care professionals. It was found that although the evidence suggests that provision of music therapy in UK PEOLC settings in the past 10 years has increased, lack of sustainable funding means the role is not consistently accessible in this setting.

Integrated breathlessness services for people with chronic conditions

Current Opinion in Supportive and Palliative Care, 2018 12(3) p.227-231

Bausewein, Claudia; Schumacher, Philipp; Bolzani, Anna

This review aims to describe recent studies evaluating the effects of breathlessness services for patients with advanced chronic conditions. The authors suggest that as the prevalence of breathlessness due to advanced disease is high and increasing, more such services should be provided to support patients throughout the course of their disease.

Psychological support for patients with cancer: evidence review and suggestions for future directions

Current Opinion in Supportive and Palliative Care, 2018 12(3) p.276-292

Hulbert-Williams, Nicholas J; Beatty, Lisa; Dhillon, Haryana M.

This article reviews contributions to the psychological literature published since January 2017. The majority of new psychological intervention research in cancer has used cognitive behavioural therapy (CBT) or mindfulness-based interventions. CBT has been considered a gold-standard intervention and recent evidence justifies continuation of this. Recent reviews call into question the validity of evidence for mindfulness-based interventions. A smaller number of trials using acceptance and commitment therapy, meta-cognitive therapy, dignity therapy and coaching have emerged, and whereas findings are promising, additional fully powered trials are required. Weaker evidence exists for counselling, support-based and narrative therapy interventions.

Supporting self-management in palliative care throughout the cancer care trajectory

Current Opinion in Supportive and Palliative Care, 2018 12(3) p.299-307

Schulman-Green, Dena; Brody, Abraham; Gilbertson-White, Stephanie; Whittemore, Robin; McCorkle, Ruth

In this review, the authors consider the complementary relationship of self-management and palliative care and how they support living with cancer as a chronic illness. Recent studies provide evidence of support among patients, family caregivers and healthcare professionals for integration of self-management interventions into palliative cancer care across the care trajectory, including the phases of curative care, palliative care, end-of-life care and bereavement.

Managing medicines for patients dying at home: a review of family caregivers' experiences

Journal of Pain and Symptom Management, September 2018
Wilson, Eleanor; Caswell, Glenys; Turner, Nicola; Pollock, Kristian

The aim of the article is to explore the literature focused on family caregivers' experiences of medications management for patients being cared for and dying at home.  The authors concluded that as increasing demands are placed on family caregivers, there remains limited acknowledgement or understanding of the challenges they face, how they cope, or could be best supported. Alongside training, family caregivers need access to 24hrs support and medication reviews to rationalise unnecessary medications.  The ethical challenges arising from administering medicines at the end of life also need to be acknowledged and discussed.

Fulltext available in Journal of Pain and Symptom Management

Is cancer fundraising fuelling quackery?

BMJ 2018 September 12
Melanie Newman

Crowdfunding sites are helping people with advanced cancer spend thousands of pounds on unproved and alternative treatments. Melanie Newman examines calls to help ensure patients and their donors are not being exploited.

Fulltext available in the BMJ

Top ten tips palliative care clinicians should know about interventional symptom management options when caring for patients with gastrointestinal malignancies.

Journal of Palliative |Medicine, 2018 21(9):1339-1343
Johnson AM, Spaete JP, Jowell PS, Kamal AH, Fisher DA.

Patients diagnosed with advanced stages of gastrointestinal (GI) malignancies are often quite symptomatic, with symptoms primarily related to anatomic sites of obstruction. Issues that may help palliative care physicians recognize common presentations of advanced GI malignancies, address interventional approaches to improve symptom burden, and improve the quality of shared decision making and goals-of-care discussions are highlighted.

Mu‐opioid antagonists for opioid‐induced bowel dysfunction in people with cancer and people receiving palliative care

Cochrane Database of Systematic Reviews 2018 June 5
Candy B, Jones L, Vickerstaff V, Larkin PJ, Stone P.

Update of 2 Cochrane reviews identified 4 new trials. Conclusions for naldemedine are new, suggesting that taken orally, it improves bowel function over 2 weeks but increases risk of adverse events. Conclusions on naloxone and methylnaltrexone have not changed.

Fulltext available from the Cochrane Library 

Mending the heart and mind during times of loss: a review of interventions to improve emotional well-being during spousal bereavement

Bereavement Care, 2018 37(2) p. 44-54
Shahane, Anoushka D.; Fagundes, Christopher P.; Denny, Bryan T.

In this paper the authors review evidence from existing pharmacological and psychotherapeutic treatment approaches for normal bereavement, complicated grief, and bereavement-related depression, and look ahead to promising future interventions.

End-of-life decision-making for people in a minimally conscious state: A review of the application of the mental capacity act 2005

Indian Journal of Palliative Care, 2018 24(3) p 334-344
Curtice, Martin; Two, Jessica; Packer, Jonathan

This article provides an overview of key sections of the Mental Capacity Act applied in end-of-life minimally conscious state cases and reviews seminal cases elucidating how the Act has been applied. It further describes the evolution of how courts have interpreted the doctrine of best interests when considering withholding or withdrawing clinically assisted nutrition and hydration and other life-sustaining treatments.

Fulltext available in Indian Journal of Palliative Care

A purpose-designed monofilament-fibre pad for debridement of hard-to-reach wounds: experience in clinical practice

Journal of Wound Care, 2018 23(7) p 421-425
Dissemond, Joachim; Eberlein, Thomas; Bültemann, Anke; Riepe, Gunnar; Stoffels, Ingo; Stephen-Haynes, Jackie; Roes, Claas; Martin, Abel

This multicentre, international user test was performed by experienced physicians and nurses in Germany and the UK, who used the monofilament-fibre pad in their clinical practice, after which they completed an evaluation questionnaire. The monofilament-fibre pad effectively, easily and safely removed slough and debris from wounds of various aetiologies and was effective in wounds of different shapes, such as in cavity wounds and those in hard-to-reach locations, and compared favourably to standard methods of debridgement.

Medicinal cannabinoids in palliative care

British Journal of Clinical Pharmacology, 2018 June
Meera Agar

There is strong public support for the availability of medicinal cannabis, particularly for people with palliative diagnoses, though clinical data to date has been inconclusive in key symptoms such as pain and nausea, and data from other settings such as chemotherapy‐induced nausea and vomiting not readily extrapolated. In people with refractory symptoms, the consideration of unregistered products or off‐label prescribing should be guided by the potential influences of pharmacokinetic, pharmacodynamic and drug–drug interactions, supported by an informed discussion with the patient, and regular review of net clinical benefit.

Fulltext available in British Journal of Clinical Pharmacology

Difficulties for a practitioner preparing a family for the death of a parent: a narrative inquiry

Mortality, 2018 23(3) p 247-260
Macpherson, Catriona

A practitioner inquiry within an NHS specialist palliative care context used narrative methods to explore difficulties faced by practitioners when assisting a family in the process of preparing a child for the death of a parent.

Psychological interventions in palliative care

Current Opinion in Psychiatry, 2018 31(5) p 389-395
Pia von Blanckenburg, Nico Leppin

This paper provides an update on recent studies about psychological interventions in palliative (mainly cancer) care with a focus on physical, psychological, spiritual, and social aspects.

Advance care planning in dementia: recommendations for healthcare professionals

BMC Palliative Care, June 2018 
Ruth Piers, Gwenda Albers, Joni Gilissen, et al

No high-quality guidelines are available for ACP in dementia care.  The authors aimed to develop evidence-based clinical recommendations to guide professionals across settings in the practical application of ACP for people living with dementia.

Fulltext available in BMC Palliative Care

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

Ten tips nephrologists wish the palliative care team knew about caring for patients with kidney disease

Journal of Palliative Medicine; Apr 2018; vol. 21 (no. 4); p. 546-551
Bansal, Amar D; Leonberg-Yoo, Amanda; Schell, Jane O; Scherer, Jennifer S; Jones, Christopher A

Written by nephrologists and palliative care clinicians, this article will help PC providers to have a richer understanding of kidney disease-related symptom burden, disease trajectory, prognosis, and barriers to hospice enrollment for patients with CKD and end-stage renal disease.

Diuretics combined with compression in resistant limb edema of advanced disease-a case series report

Journal of Pain and Symptom Management 2018; vol. 55 (no. 4); p. 1179-1183
Gradalski, Tomasz

This was a prospective observational study of 19 patients with severe bilateral leg edema resistant to parenteral diuretic therapy.  Clinically meaningful results were reported  leading the author to conclude that the combination of compression therapy with hypersaline diuretics could be considered as a valuable option for refractory cases of limb edema in advanced disease.

Targeted palliative care day therapy interventions using modified MYMOP2 tool can improve outcomes for patients with non-malignant diseases

International Journal of Palliative Nursing; Feb 2018; vol. 24 (no. 2); p. 92-95
Monnery, Daniel; Webb, Esther; Richardson, Lorna; Isaac, Jane; Chapman, Laura

The authors suggest that using the modified MYMOP2 tool to tailor and measure the outcome of holistic day therapy services results in a more sustained improvement for patients with non-malignant disease.

The efficacy of complementary therapy for patients receiving palliative cancer care

International Journal of Palliative Nursing; Mar 2018; vol. 24 (no. 3); p. 146-151
Cedar, S H; White, Melanie; Atwal, Anita

60 patients participated in this study to evaluate the effect of complementary therapies on patient well-being and to explore concerns and factors that influenced well-being in order to improve service provision. 

The nourishing role: exploratory qualitative research revealing unmet support needs in family carers of patients with advanced cancer and eating problems

Cancer Nursing; Mar 2018; vol. 41 (no. 2); p. 131-138
Hopkinson, Jane B

This study revealed that family carers needed information and support not only on how to provide nutritional care for the patients but also to manage their own nutritional risk.

Deactivation of implantable cardioverter-defibrillators in heart failure: a systematic review

Journal of Hospice and Palliative Nursing; Feb 2018; vol. 20 (no. 1); p. 63-73
Herman, Mark; Horner, Kathryn; Ly, Julie; Vayl, Yelizaveta

The aim of this systematic review was to identify problems that may delay the deactivation of implantable cardioverter-defibrillators and address possible considerations for their management to improve end-of-life care.  The authors conclude that ongoing discussions with patients are needed as well as the development of a protocol or policy to guide care at the end of life.

Psychological ideas in palliative care: distress, adjustment and coping

European Journal of Palliative Care; Jan 2018; vol. 25 (no. 1); p. 26-31

Jenny Strachan

In the latest in this Psychology in Palliative Practice series, Jenny Strachan looks at distress, coping and adjustment and considers when is a reaction normal and when does it become a problem.

Fulltext available in European Journal of Palliative Care (contact library for login details)

Available in print in Arthur Rank Hospice Library, Cambridge

Barriers to palliative care for people with severe mental illness: exploring the views of clinical staff

European Journal of Palliative Care; Jan 2018; vol. 25 (no. 1); p. 20-25
Jerwood, Jed; Phimister, Diane; Ward, Gillian; Holliday, Nikki; Coad, Jane

The first in a series of articles exploring inequalities in palliative care provision looks at end of life care for people with severe mental health illness.  It considers the challenges and the opportunities for improving high quality, personalised care for all.

Fulltext available in European Journal of Palliative Care (contact library for login details)
Available in print in Arthur Rank Hospice Library, Cambridge

'Being with' or 'doing for'? How the role of an end-of-life volunteer befriender can impact patient wellbeing: interviews from a multiple qualitative case study (ELSA)

Supportive Care in Cancer: Official Journal of the Multinational Association of Supportive Care in Cancer 2018 March 29

Steven Dodd, Matt Hill, Nick Ockenden, Guillermo Perez Algorta, Sheila Payne, Nancy Preston, Catherine Walshe

The aim of this research was to study the impact of a volunteer-provided befriending service for people in the last year of life and their families.  The participants reported feeling less lonely, isolated and depressed or anxious.

Fulltext available in Supportive Care in Cancer

Red blood cell transfusion in adult palliative care: a systematic review

Transfusion 2018, 58 (1): 233-241

Nicolas Chin-Yee, Joshua Taylor, Kaitlyn Rourke, Danika Faig, Alexandra Davis, Dean Fergusson, Elianna Saidenberg

The authors of this review concluded that although RBC transfusions might provide some relief and improve subjective well-being, the size and magnitude of the effects and the risks are unclear with no high quality evidence to support and guide the use of this procedure in the palliative care population.

A second class ending: Exploring the barriers and championing outstanding end of life care for people who are homeless (discussion paper)

Care Quality Commission and Faculty for Homeless and Inclusion Health, November 2017

This paper explores the reasons why homeless people do not experience good care at the end of life and demonstrates that there are many opportunities to improve standards of care.

Fulltext available here

The effect of relaxation techniques on edema, anxiety and depression in post-mastectomy lymphedema patients undergoing comprehensive decongestive therapy: A clinical trial

PloS One 2018 13 (1): e0190231

Bahareh Abbasi, Navid Mirzakhany, Leila Angooti Oshnari, Ashkan Irani, Samaneh Hosseinzadeh, Seyed Mehdi Tabatabaei, Shahpar Haghighat

This study aimed to assess the effects of relaxation techniques on the level of edema, anxiety and depression in women undergoing Comprehensive Decongestive Therapy (CDT).  It concluded that relaxation techniques reduced the anxiety and depression scores and the volume of edema in the patients with lymphedema.  Further studies are required to determine the cost-effectiveness of this intervention.

Fulltext available in PloS One 

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

Palliative Medicine; 2018 32(1) p. 23-35
Bristowe, Katherine; Hodson, Matthew; Wee, Bee; Almack, Kathryn; Johnson, Katherine; Daveson, Barbara A; Koffman, Jonathan; McEnhill, Linda; Harding, Richard

ACCESSCare is the first national study to examine in depth the experiences of LGBT people facing advanced illness.  It shows that 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. These are simple, low cost and offer potential gains in access to, and outcomes of, care for LGBT people.

End-of-life care for homeless people: A qualitative analysis exploring the challenges to access and provision of palliative care

Palliative Medicine; 2018 32(1) p. 36-45
Shulman, Caroline; Hudson, Briony F; Low, Joseph; Hewett, Nigel; Daley, Julian; Kennedy, Peter; Davis, Sarah; Brophy, Niamh; Howard, Diana; Vivat, Bella; Stone, Patrick

The aim of this study was to explore the views and experiences of current and formerly homeless people, frontline homelessness staff (from hostels, day centres and outreach teams) and health- and social-care providers, about the challenges of supporting homeless people with advanced ill health, and to make suggestions for improving care.  It highlights the complexities of identifying who is palliative and the lack of appropriate services for homeless people who have high support needs, particularly in combination with substance misuse issues. Recommendation include increased collaboration between services, the promotion of in-reach into hostels and greater training and support for all professional groups. 

Development and evaluation of the Dignity Talk question framework for palliative patients and their families: A mixed-methods study

Palliative Medicine; 2018 32(1) p. 195-205
Guo, Qiaohong; Chochinov, Harvey Max; McClement, Susan; Thompson, Genevieve; Hack, Tom

Effective patient-family communication can reduce patients' psychosocial distress and relieve family members' current suffering and their subsequent grief but terminally ill patients and their family members often experience great difficulty in communicating their true feelings, concerns, and needs to each other.  The aims of this study were to develop a novel means of facilitating meaningful conversations for palliative patients and family members, coined Dignity Talk and  to explore the anticipated benefits and challenges.  The questions were endorsed by a majority of participants who felt that Dignity Talk would be valuable in promoting conversations, enhancing family connections and relationships, enhancing patient sense of value and dignity, promoting effective interaction, and attending to unfinished business. 

Pharmacovigilance in hospice/palliative care: net effect of haloperidol for nausea or vomiting

Journal of Palliative Medicine; 2018 21(1) p. 37-43

Digges, Madeline; Hussein, Akram; Wilcock, Andrew; Crawford, Gregory B; Boland, Jason W; Agar, Meera R; Sinnarajah, Aynharan; Currow, David C; Johnson, Miriam J

The objective of this study war to explore the immediate and short-term net clinical effects of haloperidol when treating nausea and/or vomiting in palliative care patients.  The authors conclude that haloperidol as an antiemetic provided rapid net clinical benefit with low-grade, short-term harms.

Drugs for treating opioid-induced constipation: a mixed treatment comparison network meta-analysis of randomized controlled clinical trials

Journal of Pain and Symptom Management; Feb 2018; vol. 55 (no. 2); p. 468-479
Sridharan, Kannan; Sivaramakrishnan, Gowri

The objective of this study was to compare available interventions for the treatment of opioid-induced constipation, using principles of network meta-analysis.  The authors found the quality of evidence for the comparisons is either low or very low but concluded that subcutaneous methyl naltrexone performed better than other interventions for managing opioid-induced constipation.

Moral distress at the end of a life: when family and clinicians do not agree on implantable cardioverter-defibrillator deactivation

Journal of Pain and Symptom Management; 2018 55(2) p. 530-534
Steiner, Jill M; Patton, Kristen K; Prutkin, Jordan M; Kirkpatrick, James N

An implantable cardioverter-defibrillator can serve to avoid sudden death but may lead to a prolonged death from heart failure.  Although ethical consensus holds that defibrillator deactivation is legal and ethical, disagreements about life prolongation may complicate decision making. The ethical, technical, and medical complexity involved in the case study presented in this article speaks to the need for clear, prospective communication involving the patient, the patient's family, and members of the care team.

Addressing a patient's hope for a miracle

Journal of Pain and Symptom Management; 2018 55(2) p. 535-539
Shinall, Myrick C; Stahl, Devan; Bibler, Trevor M

Ill patients may make decisions to continue aggressive life-prolonging care based on hope for a miraculous recovery, and clinicians can find goals of care discussions with these patients extremely challenging.This case presents a typology of ways patients express hope for a miracle along with analysis of the motivations and beliefs underlying such hopes and suggestions for tailored responses by palliative care providers.

The development of a 'wet leg' pathway for chronic oedema

International Journal of Palliative Nursing; 2018 24(1) p. 40-46
Morgan, Karen; Thomas, Melanie

This article presents the Chronic Oedema 'Wet Leg' Pathway which provides nurses and therapists with clear guidelines to support prompt, efficient and effective management of all patients with chronic oedema and wet legs. 

Available in print in Arthur Rank Hospice Library, Cambridge

Psychological impairments burden and spirituality in caregivers of terminally ill cancer patients

European Journal of Cancer Care; 2018 27(1)
Lai, C; Luciani, M; Di Mario, C; Galli, F; Morelli, E; Ginobbi, P; Aceto, P; Lombardo, L

Spirituality is mostly studied in the context of terminally ill patients but this study investigates the association between spirituality, burden, and psychological state in caregivers of terminally ill cancer patients.  The authors conclude that in these caregivers, higher levels of intrinsic spirituality predicted a higher amount of time devote to caregiving, and also protected against the emotional distress linked to providing assistance.

Acupuncture in hospice settings: A qualitative exploration of patients' experiences

European Journal of Cancer Care; January 2018
McPhail, P; Sandhu, H; Dale, J; Stewart-Brown, S

The aim of this study was to explore patients' experiences of acupuncture in the hospice setting. Acupuncture was found to be a highly acceptable, accessible and popular treatment with positive holistic effects reported across the domains of physical, mental and spiritual health and no serious adverse effects. 

The acceptability and potential benefits of mindfulness-based interventions in improving psychological well-being for adults with advanced cancer: A systematic review

Complementary Therapies in Clinical Practice;  February 2018  30  p.68-78
Zimmermann, Fernanda F; Burrell, Beverley; Jordan, Jennifer

This systematic review aims to describe, evaluate and synthesize the acceptability and potential benefits of mindfulness-based interventions (MBIs) for the psychological well-being of people with advanced cancers.  It concludes that there is evidence of acceptability and of effectiveness, indicating potential benefit for this population.