It's a hard conversation to have'. Healthcare professionals' views concerning advance care discussions with young people affected by life-limiting neuromuscular diseases: an interview study

BMJ Supportive & Palliative Care, 2019 9(1) p. e9
Hiscock, Andy; Barclay, Stephen

There is very limited literature concerning the discussions about end-of-life plans healthcare professionals have with young people affected by life-limiting neuromuscular diseases. While recognising the inevitable progression of the conditions, there was no consensus among interviewees concerning best approaches to discuss end-of-life care plans. Several environmental and personal barriers were identified that lead to avoidance of the emotionally challenging and difficult conversations.

The lived experience of breathlessness for people diagnosed with heart failure: a qualitative synthesis of the literature

Current Opinion in Supportive and Palliative Care, 2019 13(1) p.18-23
Walthall, Helen; Floegel, Theresa

The experience of breathlessness in patients with heart failure is understudied. Recent studies show those at risk for and those who have heart failure need appropriate education to recognize breathlessness as a critical symptom. In addition, adequate communication between patients and providers of the breathlessness symptom is needed to support management.

Top ten tips palliative care clinicians should know about caring for patients with neurologic illnesses

Journal of Palliative Medicine, 2019 22(2) p.193-198
Mendlik, Matthew T.; McFarlin, Jessica; Kluger, Benzi M.; et al

This article offers palliative care providers 10 useful tips that neurologists with palliative care training think all PC providers should know to improve care for patients with neurologic illness.

What do patients and family-caregivers value from hospice care? A systematic mixed studies review

BMC Palliative Care 2019, 18:18 (Published on: 8 February 2019)
Nicole Marie Hughes, Jane Noyes, Lindsay Eckley and Trystan Pritchard

This is the first review to explore what patients and carers value from hospice care. Findings strengthen the existing evidence base and provide new insights beyond symptom management and health outcomes.  With large disparities in the availability of services, however, the underrepresentation of patients with nonmalignant diseases and the limited evidence base demonstrating adequate support for the social needs of carers, there continues to be considerable gaps. 

Fulltext available in BMC Palliative Care 

Upper extremity subcutaneous lymphatic drainage "lymphocentesis" for symptom relief in end-stage breast cancer

American Journal of Hospice & Palliative Medicine, 2019 36(2) p. 111-115

Liao, Pamela; Rossini, Kathleen; Sauls, Roberts

Subcutaneous drainage is a technique that has been used in some case reports for the lower extremity and sacrum with good results. This report describes an adapted technique of subcutaneous drainage for treating upper extremity lymphedema in the palliative setting.

Top ten tips palliative care clinicians should know about spinal tumors

Journal of Palliative Medicine, 2019 22(1) p. 84-89

Theresa Williamson, Brice Painter, Elizabeth P Howell, C Rory Goodwin

Continuing the 'Top Ten Tips' series, this month's issue looks at crossfunctional collaboration between palliative care, radiation oncology, medical oncology, and neurosurgery which is crucial both in the maximization of available treatment options and optimization of quality of life for patients with metastatic spine tumours.

Music intervention as a tool in improving patient experience in palliative care

American Journal of Hospice & Palliative Medicine, 2019 36(1) p. 45-49

Peng, Cynthia S.; Baxter, Kelly; Lally, Kate M.

In this study, following live music intervention sessions, patients reported significant decreases in pain, anxiety, nausea, shortness of breath, and feelings of depression along with significant increase in feelings of well-being. Opioid use in time periods after the music intervention trended toward decreased usage when compared to the equivalent time period before. Finally, compiled personal narratives of patients' and families' experiences of the music intervention demonstrated common themes of spirituality, comfort, relaxation, escape, and reflection.

"Remembrance": a self-care tool for clinicians

Journal of Palliative Medicine 2018 December 15

Sue E Morris, John P Kearns, Amanda Moment, Kathleen A Lee, Jane deLima Thomas

This article describes the development of "Remembrance," an interdisciplinary approach to acknowledge and process the deaths of patients on an inpatient palliative care unit. The authors suggest that such a practice is an important component of both quality end-of-life care and clinician self-care, which should be routinely taught and incorporated into clinical services. A template is included that summarises the approach, which can be easily adapted by other hospitals/services to use.

Fulltext available in Journal of Palliative Medicine 

'I've no fear of dying alone': exploring perspectives on living and dying alone

Mortality, 2019 24(1) p. 17-31
Caswell, Glenys; O'Connor, Mórna

This paper reports findings from a study which explored ways of investigating individuals' perspectives on dying alone at home. For the older people, the idea of dying alone was less problematic than the idea of needing care and support from others, and the perceived loss of independence that this would entail. The nurses would prefer no one to die alone, but believed they had seen patients managing their own dying so that they could be alone at the moment of death. The paper suggests that dying alone may be a problem for survivors, rather than for the person who is dying.

Diagnosis, assessment and management of constipation in advanced cancer: ESMO Clinical Practice Guidelines

Annals of Oncology: Official Journal of the European Society for Medical Oncology, 2018 29 (Supplement 4) p. iv111-iv125
P J Larkin, N I Cherny, D La Carpia, M Guglielmo, C Ostgathe, F Scotté, C I Ripamonti

The 2018 ESMO Clinical guidelines on diagnosis, assessment and management of constipation in advanced cancer update evidence in relation to strategies for management. Opioid analgesics for cancer pain pose specific challenges for constipation management. A recommendation for the use of peripherally-acting mu-opioid receptor antagonists (PAMORAS) including prolonged-released formulations in the management of refractory constipation is included.

Fulltext available at the European Society for Medical Oncology

The use of humor in palliative care: a systematic literature review

American Journal of Hospice & Palliative Care 2018, 35 (10): 1342-1354
Miguel Ángel Cuervo Pinna, Vinita Mahtani-Chugani, Miguel Ángel Sánchez Correas, Alvaro Sanz Rubiales

The acceptance of the use of humour by terminal stage patients and health-care professionals has not been studied in depth and is not free from controversy. The aim of the study was to understand the significance, appropriateness, and pertinence of the use of humour in palliative care and to analyse its applicability.

The ‘safe death’: an ethnographic study exploring the perspectives of rural palliative care patients and family caregivers

Palliative Medicine, 2018 32(10) p. 1575-1583
Rainsford, Suzanne; Phillips, Christine B.; Glasgow, Nicholas J.; MacLeod, Roderick D.; Wiles, Robert B.

It was found that a ‘safe death’ was central to a ‘good death’ and was described as a death in which one could maintain (1) a connection with one’s previous identity; (2) autonomy and control over decisions regarding management of end-of-life care and (3) not being overwhelmed by the physical management of the dying process. For all participants, the preferred place of death was the ‘safe place’, regardless of its physical location. The authors conclude that a home death is not essential for and does not ensure a ‘good death’.

Development, validity and reliability testing of the East Midlands Evaluation Tool (EMET) for measuring impacts on trainees' confidence and competence following end of life care training

BMJ Supportive & Palliative Care, 2018 8(4)  p.439-446
Whittaker, B; Parry, R; Bird, L; Watson, S; Faull, C; 

The EMET comprises 27 items with Likert-scaled responses supplemented with questions seeking free-text responses. The authors suggest that this tool is effective in assessing impacts of end of life care training and gathering feedback on training events.

Available in print in Arthur Rank Hospice Library, Cambridge

Crash course in EPaCCS (Electronic Palliative Care Coordination Systems): 8 years of successes and failures in patient data sharing to learn from

BMJ Supportive & Palliative Care, 2018 8(4), p447-455
Petrova, Mila; Riley, Julia; Abel, Julian; Barclay, Stephen

EPaCCS are England's pre-eminent initiative in enabling advance care planning and improved communication and coordination at the end of life but have been extremely challenging to develop and implement. The authors discuss the current EPaCCS landscape and way forward, summarise key facts concerning the availability, uptake, outcomes and costs of EPaCCS and outline the key challenges and drivers. 

Fulltext available in BMJ Supportive & Palliative Care

Available in print in Arthur Rank Hospice Library, Cambridge

Dying in long-term care: perspectives from sexual and gender minority older adults about their fears and hopes for end of life

Journal of Social Work in End-of-Life & Palliative Care, Nov 2018 ; p. 1-16
Kortes-Miller, Katherine; Boulé, Jessica; Wilson, Kimberley; Stinchcombe, Arne

This qualitative study from Canada explored the hopes and fears of older LGBTQ + adults considering long-term care as they face end of life. Fears included social isolation, decreased independence and capacity for decision-making, increased vulnerability to LGBTQ+-related stigma as well as exposure to unsafe social and physical environments. The authors conclude there is a need for palliative care specialists and long-term care home staff to address the unique health needs of older LGBTQ + adults nearing the end of life in order to create supportive and inclusive long-term care environments.

Welcoming death: exploring pre-death grief experiences of caregivers of older adults with dementia

Journal of Social Work in End-of-Life & Palliative Care, Nov 2018 ; p. 1-17
Hovland, Cynthia

This qualitative study explored the end-of-life experiences for 36 bereaved family caregivers of older adults with dementia, focusing on understanding their experiences with pre-death grief. These caregivers shared experiences with the phenomenon of "welcoming death" and findings highlighted the primary reasons they anticipated, accepted, or wished for the death of their family member with dementia. With the overarching goal of improving bereavement outcomes and reducing feeling of guilt, the author recommends pre-death grief support services throughout the caregiving process.

Systematic review and meta-analysis on non-opioid analgesics in palliative medicine

Journal of Cachexia, Sarcopenia and Muscle 2018 October 29

Robert H Schüchen, Martin Mücke, Milka Marinova, Dmitrij Kravchenko, Winfried Häuser, Lukas Radbruch, Rupert Conrad

This systematic review aimed to bring together the evidence for pain relief in palliative care but was able to identify only studies dealing with cancer pain.  The review summarises this evidence and highlights the lack of evidence for the management of pain with non-opioids in conditions other than cancer. 

Fulltext available at Wiley Online Library 

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