The ethics of prioritizing access to palliative care: a qualitative study

American Journal of Hospice & Palliative Medicine, 2019 36(7) p.577-582

Philip, Jennifer; Russell, Bethany; Collins, Anna; Brand, Caroline; Le, Brian; Hudson, Peter; Sundararajan, Vijaya

Semi-structured focus groups and individual interviews were conducted with twenty health professionals working across various disciplines, service types and locations in Victoria, Australia.  This study revealed key ethical decision-making issues associated with prioritizing access to palliative care services. The authors argue that making explicit the processes and influences upon decision-making provides greater transparency that limited resources are allocated in an equitable and reproducible way.

The trajectory of functional decline over the last 4 months of life in a palliative care population: a prospective, consecutive cohort study

Palliative Medicine, 2019 33(6) p.693-703

Morgan, Deidre D; Tieman, Jennifer J; Allingham, Samuel F; Ekström, Magnus P; Connolly, Alanna; Currow, David C

Understanding current patterns of functional decline will inform patient care and has health service and resource implications.  Data were collected from 55,954 patients cared for in hospices, hospitals and at home. Changes in functional status were measured using the Australia-modified Karnofsky Performance Status Scale.  Two simplified trajectories of functional decline in the last 4 months of life were identified for five patient cohorts. Both trajectories present opportunities to plan for responsive healthcare that will support patients and families.

Fulltext available in Palliative Medicine 

Socioeconomic factors affecting access to preferred place of death: a qualitative evidence synthesis

Palliative Medicine, 2019 33(6) p.607-617

Turner, Victoria; Flemming, Kate

Existing quantitative evidence suggests that at a population level, socioeconomic factors affect access to preferred place of death. However, the influence of individual and contextual socioeconomic factors on preferred place of death in the UK are less well understood.  The authors conclude that the main factor affecting access to preferred place of death was social support; people with fewer informal carers were less likely to die in their preferred location. Other key findings included fluidity around the concept of home and variability in preferred place of death itself. They suggest there needs to be more widespread discussion and documentation of preferred place of death while also recognising these preferences may change as death nears or in times of crisis.

Teaching health-care providers to query patients with cancer about sexual and gender minority (sgm) status and sexual health

American Journal of Hospice & Palliative Medicine, 2019 36(6) p.533-537

Cathcart-Rake, Elizabeth J.; Breitkopf, Carmen Radecki; Kaur, Judith; et al

End of life is difficult for all patients but sexual and gender minorities (SGM) are prone to isolation and loneliness, especially if their SGM status is unknown or unaccepted. This article summarizes the mandate for understanding cancer issues in SGM populations and the dearth of cancer-related data within this group. It also describes an ongoing 3-part study intended to build a mini curriculum with the goal of helping cancer health-care providers to ask patients with cancer about SGM status and to ask all patients with cancer about sexual health issues. The results of this ongoing study could potentially improve end-of-life care for subgroups of patients.

Volunteer involvement in advance care planning: a scoping review

Journal of Pain and Symptom Management, 2019 57(6) p.1166
Sellars, Marcus; Simpson, Jamie; Kelly, Helana; et al

Volunteer involvement in ACP has not been clearly described in the literature. This study aimed to map research on volunteer involvement in ACP, identify outcomes associated with ACP volunteer models, and determine gaps in existing knowledge. The results obtained will help to inform strategies that will maximize volunteer effectiveness and performance monitoring in ACP delivery.  A positive finding from the review was that most of the volunteer-led ACP facilitation programs reported improvements in the frequency of completion of ACP conversations or advance care directives, compared with having no ACP initiative in place. In addition, volunteers in both facilitation and education roles became more comfortable discussing ACP as they became more experienced in their role. 

Fulltext available in Journal of Pain and Symptom Management 

A palliative care model and conceptual approach suited to clinical malignant haematology

Palliative Medicine, 2019 33(5) p.483-485
Button, Elise; Bolton, Michael; Chan, Raymond J; et al

In this opinion piece the authors discuss a palliative care model and conceptual approach that are well suited to clinical malignant haematology and can lead to best practice palliative and end-of-life care for this unique population.  Palliative care is still integrated from diagnosis and tailored around the individual’s needs, but, in this model, can lead to death and bereavement care or cure and survivorship care. This model demonstrates the evolution of the palliative care model from terminal care to individualised care that is responsive to patients’ needs and unpredictable illness trajectories. 

Fulltext available in Palliative Medicine

Advance care planning in progressive neurological diseases: lessons from ALS

BMC Palliative Care 2019 18:50
Antje A. Seeber, A. Jeannette Pols, Albert Hijdra, Hepke F. Grupstra, Dick L. Willems and Marianne de Visser

The authors used the knowledge gained from observing ACP in a tertiary ALS centre in Amsterdam to formulate recommendations for integration of ACP in the care of patients with other chronic progressive neurological diseases.  They suggest that it is feasible to integrate ACP into follow-up of patients with ALS and PMA from diagnosis onwards. Supported by recent literature, they argue that such a well-structured approach would enhance the quality of care and life of patients with other chronic progressive neurological diseases.

Fulltext available in BMC Palliative Care 

Imminent death: clinician certainty and accuracy of prognostic predictions

BMJ Supportive & Palliative Care, 2019, May 10

Nicola White, Fiona Reid, Victoria Vickerstaff, Priscilla Harries, Christopher Tomlinson, Patrick Stone

The results of this study show that even when doctors are very (>90%) confident that a patient will die within the next 72 hours, these estimates are only correct on 75% of occasions. It is therefore important for clinicians to convey this level of uncertainty in their communications with patients and relatives. This suggests that while clinical predictions will continue to have a role for routine prognostication, other approaches (such as the use of prognostic scores) may be required for those cases where doctors’ estimates are indeterminate.

Fulltext available in BMJ Supportive and Palliative Care 

Opioid use in palliative care: new developments and guidelines

Prescriber, 2019 30(4) p.25-31

Lucy Bemand-Qureshi; Faye Gishen; Adrian Tookman

This article looks at the analgesic options available and reviews recent evidence and guidelines.

Full text available in Prescriber

Breakthrough cancer pain in patients with abdominal visceral cancer pain

Journal of Pain and Symptom Management, 2019 57(5) p.966-970
Mercadante, Sebastiano; Adile, Claudio; Masedu, Francesco; Valenti, Marco; Aielli, Federica

The study aim was to assess the characteristics of breakthrough cancer pain (BTcP) in patients with abdominal cancer pain, and the eventual factors associated with its presentation.  Four hundred and fourteen patients were included.  The researchers found that in nearly a third of patients, the breakthrough pain was predictable and that ingestion of food was the most frequent trigger. 

Young people and their understanding of loss and bereavement

Bereavement Care, 2019 38(1)  p.6-12
Scott, Ros; Wallace, Rebecca; Audsley, Annie; Chary, Srini

The aim of this study was to explore how pupils aged between 12 and 18 understand major loss, death and dying, whom they talk to and the support they access at these times, and their awareness of the range of support available to them.  It was found that pupils who had experience of major loss or bereavement showed significant awareness of their feelings. It appears that young people primarily seek support from family, friends and the school.

Risk reduction and management of delirium

Scottish Intercollegiate Guidelines Network, March 2019

This guideline provides recommendations based on current evidence for best practice in the detection, assessment, treatment and follow up of adults with delirium, as well as reducing the risk of delirium. The guideline applies to all settings: home, long-term care, hospital, and hospice.

Fulltext available at the SIGN website

Acupuncture therapy improves health-related quality of life in patients with chronic obstructive pulmonary disease: a systematic review and meta-analysis

Complementary Therapies in Clinical Practice, 2019 35 (May) p. 208-218
Po-Chun Hsieh; Mei-ChenYang; Yao-Kuang Wu; et al

The conclusions of this review are that body acupuncture therapy is an effective adjunctive non-pharmacological treatment to improve HRQL in patients under medical treatment for COPD. The authors suggest that BAT should be considered as one of the methods of management in patients with COPD.

Systematic bias in cancer patient-reported outcomes: symptom 'orphans' and 'champions'.

BMJ Supportive & Palliative Care, 2019 9(1) p. 67-74
Thomas, Shirley; Walsh, Declan; Aktas, Aynur

In this context, 'orphans' were defined as any symptom not assessed in any of the six selected instruments referenced; 'champions', in contrast, were present in all six. Of 46 checklist cancer symptoms, over a third were orphans. Only 5 checklist symptoms were champions: fatigue, pain, anorexia, dyspnoea and nausea. The bias appears to disproportionately affect gastrointestinal and neuropsychiatric symptoms. It's suggested that symptom studies should specifically report the limitations and account for the inherent item bias of any instrument used.

Fulltext available in Arthur Rank Hospice Library, Cambridge

Top ten tips palliative care clinicians should know about medical cannabis

Journal of Palliative Medicine, 2019 22(3) p. 319-325
Briscoe, Joshua; Kamal, Arif H.; Casarett, David J.

The use of medical cannabis is increasing significantly in spite of limited and sometimes contradictory data about its effectiveness. This article seeks to dispel myths about medical cannabis and provides a balanced view of the benefits and burdens of this therapeutic option, providing evidence where it exists and offering practicing clinicians guidance on conditions in which medical cannabis is likely to be helpful or burdensome.

"Remembrance": a self-care tool for clinicians

Journal of Palliative Medicine, 2019 22(3) p. 316-319
Morris, Sue E.; Kearns, John P.; Moment, Amanda; et al

In this article, the authors describes the development of "Remembrance," an interdisciplinary approach to acknowledge and process the deaths of patients on an inpatient palliative care service, paying particular attention to how patients and their families affect them as clinicians. They suggest that such a practice is an important component of both quality end-of-life care and clinician self-cares. A template summarizes the approach, which can be easily adapted for use by others.

Quality indicators for Palliative Day Services: a modified Delphi study.

Palliative Medicine 2019 33(2) p. 197-205
McCorry, Noleen K.; O'Connor, Sean; Leemans, Kathleen, et al

The aim of this study was to develop and provide the first set of quality indicators that describe and evaluate the quality of Palliative Day Services. The resulting indicators were compiled into a 'toolkit' and tested in five UK Palliative Day Service settings. The result was the identification of 30 indicators which were used in practice testing. The final indicator set comprised 7 structural indicators, 21 process indicators and 2 outcome indicators. The authors suggest that these indicators deliver an appropriate and feasible means to assess, review, and communicate the quality of care, and to identify areas for quality improvement.

Anticipatory prescribing of injectable medications for adults at the end of life in the community: a systematic literature review and narrative synthesis

Palliative Medicine 2019 33(2) p. 160-177
Bowers, Ben; Ryan, Richella; Kuhn, Isla; Barclay, Stephen

The anticipatory prescribing of injectable medications to provide end-of-life symptom relief is an established community practice in a number of countries. However, current anticipatory prescribing practice and policy is based on an inadequate evidence base. The authors conclude that the views and experiences of patients and their family carers towards anticipatory prescribing need urgent investigation and that further research is needed to investigate the impact of anticipatory prescribing on patients' symptoms and comfort, patient safety, and hospital admissions.

Brief psychosocial interventions improve quality of life of patients receiving palliative care: a systematic review and meta-analysis

Palliative Medicine, 2019 33(3) p. 332-345
Warth, Marco; Kessler, Jens; Koehler, Friederike, et al

The authors reported the effects of 17 interventions involving 1248 patients. They conclude that brief psychosocial interventions can improve clinically relevant health outcomes, including improvement in quality of life and a reduction in emotional and existential distress compared to the control groups.

Palliative care physicians' perspectives on transferring patients to nursing homes and communication strategies to facilitate this transition: a qualitative study

Palliative Medicine, 2019 33(3) p.323-331
Stiel, Hilary; Nagarajan, Srivalli V.; Forster, Benjamin C.; Clayton, Josephine M.

This study highlights the tension Australian palliative care physicians experience when transferring palliative care patients to nursing home and the complexity involved in decision-making. Physicians identified several communication strategies to engage patients and families to ease the transition.

TIME CDST: an updated tool to address the current challenges in wound care

Journal of Wound Care, 2019 28(3) p.154-161
Moore, Zena; Dowsett, Caroline; Smith, Glenn, et al

The TIME principle was first published in 2003. However, this tool has been criticised for its tendency to focus mainly on the wound rather than on the wider issues that the patient is presenting with. At an expert meeting held in London in 2018, this conundrum was addressed and the TIME clinical decision support tool (CDST) was elaborated upon. This article introduces the TIME CDST, explains why it is required and describes how its use is likely to benefit patients, clinicians and health-service organisations.

Acupuncture for cancer pain and symptom management in a palliative medicine clinic

American Journal of Hospice & Palliative Medicine, 2019 36(4) p.326-332
Miller, Katherine R.; Patel, Jai N.; Symanowski, James T.; Edelen, Connie A.; Walsh, Declan

This study determined acupuncture's effect on cancer-related pain and identified variables associated with pain response.  The authors conclude that acupuncture improved cancer-related pain and other symptoms. Those with higher baseline pain scores and advanced disease were more likely to achieve significant pain reduction. Improved depression and fatigue were closely related to pain reduction.

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