Palliative care for people with dementia living at home: A systematic review of interventions

Palliative Medicine, 2019 33(7) p.726-742

Miranda, Rose; Bunn, Frances; Lynch, Jennifer; Van den Block, Lieve; Goodman, Claire

The aim of this review was to examine evidence on home palliative care interventions in dementia, in terms of their effectiveness on end-of-life care outcomes, factors influencing implementation, the extent to which they address the European Association for Palliative Care palliative care domains and evidence gaps. The evidence, albeit of generally weak quality, showed the potential benefits of the interventions in improving end-of-life care outcomes, for example, behavioural disturbances. The interventions most commonly focused on optimal symptom management, continuity of care and psychosocial support. 

Fulltext available in Palliative Medicine

S.T.R.I.D.E. professional guide to compression garment selection for the lower extremities

Journal of Wound Care, 2019 28(Sup6a) p.1-44

Bjork, R; Ehmann, S.

The authors' intention is to propose a decision support system for choosing specific compression devices, which can be adjusted to counteract the individual signs and symptoms in an optimally adopted way. The document concentrates on compression devices which can be self-applied by the patients: compression stockings and adjustable wraps. The acronym 'S.T.R.I.D.E.', incorporating both textile characteristics and clinical presentation, stands for: Shape, Texture, Refill, Issues, Dosage and Etiology.

Fulltext available at the Journal of Wound Care website

Psychosocial interventions for pain management in older adults with dementia: a systematic review of randomized controlled trials

Journal of Advanced Nursing, 2019 75(8) p.1608-1620

Pu L; Moyle W; Jones C; Todorovic M.

The findings of this review suggest that psychosocial interventions may be potentially effective alternatives for pain management in people with dementia, perhaps leading to a reduction in pain medication. However, the authors warn that caution is needed in interpreting these results due to limited studies, risk of bias and heterogeneity across studies.

How can activity monitors be used in palliative care patients?

Journal of Palliative Medicine, 2019 22(7) p.830-832

To, Timothy H.M; Currow, David C; Swetenham, et al

Objective measurement of physical activity in palliative care patients is challenging. In this article, the authors highlight their experiences of activity monitoring in palliative care patients as part of a telehealth trial. They highlight the strengths and limitations of activity monitoring in this patient group and potential applications. They conclude that although the advent of consumer technology for activity measurement makes their use seem attractive in palliative clinical settings, there are a number of issues that must be considered, in particular the reason for the activity monitoring and associated limitations in the technology.

Treatment for lymphedema following head and neck cancer therapy: A systematic review.

American Journal of Otolaryngology, 2019 May 30.
Tyker A, Franco J, Massa ST, Desai SC, Walen SG

The aim was to perform the first systematic review evaluating all established treatment modalities of head and neck lymphedema resulting from head and neck cancer therapy. Evidence for the efficacy of all types of lymphedema therapy is limited by paucity of large randomized controlled trials. While manual lymph drainage is best studied, liposuction and surgical treatments have also been effective in a small number of patients.

Benzodiazepines and/or neuroleptics for the treatment of delirium in palliative care: a critical appraisal of recent randomized controlled trials.

Annals of Palliative Medicine, 2019 Mar 26.
Gaertner J1, Eychmueller S2, Leyhe T3, Bueche D4, Savaskan E5, Schlögl M

Despite the lack of randomized-controlled-trials (RCTs) benzodiazepines and neuroleptic agents are used extensively in palliative care for the pharmacological management of delirium.  This is a narrative summary of the findings of two RCTs and practical recommendations are presented. The recently published landmark RCTs provide moderate evidence to adopt recommendations from other medical specialties (i.e., intensive care, geriatrics) to the field of palliative care.

Fulltext available in Annals of Palliative Medicine

Palliative care for persons with Parkinson’s disease: a qualitative study on the experiences of health care professionals

BMC Palliative Care 2019 18:53
Herma Lennaerts, Maxime Steppe, Marten Munneke, et al

The aim of this study was to examine health care professionals’ experiences of potential barriers and facilitators in providing palliative care for people with Parkinson's Disease in the Netherlands.  In daily practice, they struggled to identify persons’ needs due to PD-specific symptoms such as cognitive decline and communication deficits. Timely advance care planning to explore the personal preferences for palliative care was identified as an important facilitator. Findings indicate a perceived lack of care continuity, fragmentation of services, time pressure and information discontinuity and a need to improve the knowledge of complex PD.

Fulltext availalbe in BMC Palliative Care

Palliative care for people with substance use disorder and multiple problems: a qualitative study on experiences of patients and proxies

BMC Palliative Care 2019 18:56

Anne EbenauBoukje Dijkstra,Chantal ter Huurne,Jeroen Hasselaar,Kris Vissers and Marieke Groot

This study aims to explore the issues and needs of patients with SUD and multiple problems, and their proxies, in the palliative care phase. It shows that talking about and anticipating palliative care with this patient-group appears hard due to patients’ closed and avoiding communication. Furthermore, some of the patients’ EOL preferences and needs, and coping strategies, seem to differ from the more generally-accepted ideas and practices. The authors offer suggestions for the improvement in communication with this patient-group, the identification of the palliative care phase and person-centred care.

Fulltext available at BMC Palliative Care

Preferences for place of care and place of death: What, how, when and who to ask

Progress in Palliative Care, 2019 27(2) p.64-68

Gerber, Katrin; Hayes, Barbara; Bryant, Christina

The strategies that researchers and clinicians use to capture the end-of-life views of patients vary greatly in four key questions. These include: what, how, when and who to ask about location preferences. The authors argue that how researchers and clinicians choose to answer these questions directly influences their findings. Ways to improve future palliative care and empirical end-of-life studies by addressing the precision, methods, timing and sources of preference assessments are highlighted.

Effectiveness of a short-term psychotherapeutic group for doctors and nurses in a hospice in Southern Europe

Progress in Palliative Care; Apr 2019; vol. 27 (no. 2); p. 58-63
Floriana, Caccamo; Luca, Caldironi; Simona, Ghedin

This pilot study aimed to evaluate the effectiveness of a short-term psychotherapeutic group implemented for doctors and nurses of a Hospice in southern Europe. Burnout and alexithymia were measured at the beginning and at the end of a psychotherapeutic group conducted with the Photolangage method which encourages sharing of emotional experiences by the medium of a photo. Significant differences between pre- and post-evaluation were observed in the scores for alexithyimia (measured with TAS-20) and burnout (measured with MBI). This is suggestive of the effectiveness of this group intervention in reducing risk of burnout and increasing awareness of emotions experienced during daily work at the hospice.

Management of venous thromboembolism in far-advanced cancer: current practice

BMJ Supportive & Palliative Care 2019 June 25

Simon Noble, Sophie Banerjee, Nikki Jane Pease

Guidelines suggest that indefinite anticoagulation be considered for patients with ongoing active cancer.  This paper reviewed current practice and associated symptoms at the end of life for patients with advanced cancer who had been anticoagulated for VTE.  

The majority of cancer associated thrombosis patients with metastatic disease remain anticoagulated up to or within days of death. Despite the limitations of retrospective data across healthcare settings, the authors suggest that anticoagulation as death approaches confers a significant bleeding risk without additional benefit of preventing VTE symptoms.

Group singing in bereavement: effects on mental health, self-efficacy, self-esteem and well-being

BMJ Supportive & Palliative Care, June 2019
Fancourt, Daisy; Finn, Saoirse; Warran, Katey; Wiseman, Theresa

This study used a non-randomised controlled design to explore the effects of group choir singing on mental health among people who have been bereaved due to cancer.  Participants who sang in a choir had more stable symptoms of depression and levels of well-being, as well as gradual improvements in their sense of self-efficacy and self-esteem over the 24 weeks. In contrast, those in the control group showed gradual increases in depressive symptoms, reductions in levels of well-being and self-esteem and no improvement in their self-efficacy.  These results were independent of all covariates.  The authors conclude that weekly group singing could be a promising mutual support intervention for people experiencing grief.

Fulltext available in BMJ Supportive and Palliative Care

Palliative care for people with dementia living at home: a systematic review of interventions

Palliative Medicine, 2019 33(7) p.726-42
Rose Miranda, Frances Bunn, Jennifer Lynch, et al 

The aim of this review was to examine evidence on home palliative care interventions in dementia, in terms of their effectiveness on end-of-life care outcomes, factors influencing implementation, the extent to which they address the European Association for Palliative Care palliative care domains and evidence gaps.

None of the evidence found was of high quality.  However, it showed the potential benefits of the interventions in improving end-of-life care outcomes, for example, behavioural disturbances. The interventions most commonly focused on optimal symptom management, continuity of care and psychosocial support.  No direct evidence on facilitators and barriers to implementation was found.

Fulltext available in Palliative Medicine

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.