Dying persons’ perspectives on, or experiences of, participating in research: An integrative review
Bloomer et al. Palliative Medicine 2017
This review explores the evidence of dying patient’s views with regards to participating in research. 10 studies across 5 countries, were included, with inpatient, outpatient, and clinical trial settings. Patients have diverse motivations for cooperating with research programs, but overall there was a strong desire to help others, particularly with regards to improving future care and contributing to research.
Characterising the growth in palliative care prescribing 2011–2015: Analysis of national medical and non-medical activity
Ziegler et al. Palliative Medicine 2017
To establish the level of non-medical prescribers’ activity in palliative care across England, prescriptions of palliative care medications issued by general practitioners, nurses and pharmacists in England and dispensed in the community between April 2011 and April 2015 were extracted from the Prescribing Analysis Cost Tool system. The number of prescriptions issued by nurse prescribers in community palliative care in England has doubled since 2012, with much of this related to opioid prescribing in the community. Non-medical prescribers are now prescribing 7% of all medications issued in community palliative care.
The Royal College of Physicians
This month, the Royal College of Physicians is focusing on end-of-life care in both of its journals and in its membership magazine. Clinical Medicine includes reviews of how to manage cancer pain and non-pain symptoms (co-authored by Jason Boland, chair of the APM Science Committee), plus guidance on less directly clinical aspects of caring for the dying patient, ranging from legal issues to religion.
The Future Healthcare Journal, meanwhile, focuses on the system changes needed to deliver high-quality care at the end of life, plus research and discussions around attitudes to assisted dying, while Commentary Magazine brings a wide variety of perspectives by key thinkers and innovators in the field, as well as family members and carers.
Phase of Illness in palliative care: Cross-sectional analysis of clinical data from community, hospital and hospice patients.
Palliat Med. 2018 Feb;32(2):404-412
Mather H, Guo P, Firth A, et al.
A secondary data analysis of 1317 patients (75% had a diagnosis of cancer) who attended palliative care services in the south of England looked at patient, family and carers needs using validated measures and associations with phase of illness. In unstable and deteriorating phases, pain, physical problems and psycho-spiritual issues were significantly higher than in the stable and dying phases. In the multivariate analysis, family and carers needed more support in the deteriorating phase than the unstable phase of illness; there was no association between psycho-spiritual problems and phase of illness. The authors concluded that the phase of illness can be considered as a measure of palliative care needs.
Can patient-reported measurements of pain be used to improve cancer pain management? A systematic review and meta-analysis.
BMJ Support Palliat Care.
Adam R, Burton CD, Bond CM, et al.
This systematic review and meta-analysis looked at whether providing feedback to patients and/or professionals from patient-reported pain measurements influenced management of cancer pain. There were 29 studies included (22 trials of 20 interventions; 5234 participants). The narrative synthesis reported that feedback of pain measurements increased discussions between patients and professionals about pain and/or symptoms. Twelve studies were included in the meta-analysis, there was moderate heterogeneity. This analysis showed statistically significant reduction in average pain intensity in the intervention group.
Neoh K, Stanworth S, Bennett MI: Blood transfusion practice in the UK and Ireland: a survey of palliative care physicians. BMJ Supportive & Palliative Care 2018 (published online ahead of print)
This national survey of the Association for Palliative Medicine membership (n = 293, response rate 27%) sought to compare members’ blood transfusion practice to the latest NICE guidelines, using 4 scripted vignettes. Less than half of respondents gave responses concordant with latest guidelines, and most were more likely to prescribe blood transfusion than NICE guidance would suggest is appropriate. Trainees were less liberal in their approach to transfusion than more senior physicians. The authors recognise that NICE guidance is mainly based on evidence from trials outside of the palliative care context, and that more evidence is needed to guide transfusion practice in palliative care.
Pask S, Pinto C, Bristowe K et al: A framework for complexity in palliative care: A qualitative study with patients, family carers and professionals. Palliative Medicine 2018 (published online ahead of print).
The authors sought to understand what complexity means in palliative care using qualitative interviews with 65 stakeholders across the United Kingdom. Findings included the importance of ‘pre-existing’, ‘cumulative’ and ‘invisible’ complexity, and the complexity of interactions between patients, families, and professionals across different services. The authors used an ecological systems theory approach to understand how complexity may exist at different levels. They conclude that this more detailed understanding of complexity may help services to target resources where they are most needed.
Naima B Benelhaj, Ann Hutchinson, Anthony M Maraveyas, Julie D Seymour, Muhammad Waqas Ilyas, Miriam J Johnson
Palliative Medicine 2018 vol 32(5) 1010- 1020
This article identified the available literature on patients experience of cancer-associated thrombosis. They identified 1397 articles, only 5 met the inclusion criteria. They used a quality appraisal checklist on all of the identified articles. Themes that emerged included knowledge deficit from patients and clinicians, effects of cancer-associated thrombosis, both physical and psychological, and effects of anticoagulation and coping strategies. They concluded that thrombosis is a frightening and unexpected burden on cancer patients. They felt that patients are not routinely educated about the risk or warning signs of thromboembolism, and called for education for patients and clinicians to be part of routine care and further work to address this patient priority.
Harriet Lancaster, Ilora Finlay, Maxwell Downman, James Dumas
BMJ Supportive and Palliative Care 2018, 8, 93-101
This article sought to explore the variation in commissioning of services by Clinical Commissioning Groups (CCGs), using a data collection exercise. They used a Freedom of Information request in the form of a questionnaire to all 209 CCGs in England. Only 29 CCGs provided information on the number of patients with palliative care needs in their population. The authors found that budgets were very variable – providing evidence to support concerns about a postcode lottery. Provision of 24 hour access to specialist palliative care and pain control was also found to be inconsistent. There was also variation in the type of training provided to healthcare professionals. Only half of those that responded are committed to improving their services in the future. This study showed that not only is there variation in provision of services in England but also little uniformity in the information the CCG is required to hold and a disparity in the responsibility of service provision between CCGs, trusts and hospices. The authors suggest that this data shows that palliative care is not being seen as a core service in some parts of England and call for a national framework to ensure patients achieve good end of life care everywhere.
End of life care and quality of dying in 23 acute geriatric hospital wards in Flanders, Belgium. Verhofstede et al.
This is a cross-sectional descriptive study across thirteen acute hospitals. Structured after death questionnaires were completed by medical, nursing staff and family carers. This is an interesting 360 degree approach to measure quality of dying. The most frequent symptoms reported were shortness of breath, lack of serenity/ peace and lack of calm (reported by nurses and carers).
Emergency department staff priorities for improving palliative care provision for older people: a qualitative study. Wright et al. Palliative Medicine online
Qualitative study to establish emergency clinicians’ improvement priorities for emergency department-based palliative care for older people.
Hyperacute peripheral neuropathy is a predictor of oxaliplatin-induced persistent peripheral neuropathy. Tanishima et al.
Retrospective analysis of forty-seven cases showed that total oxaliplatin dose and presence of hyperacute peripheral neuropathy were predictors of persistent peripheral neuropathy
Efficacy, tolerability and acceptability of oxycodone for cancer-related pain in adults: an updated Cochrane systematic review
Mia Schmidt-Hansen, Michael I Bennett, Stephanie Arnold, Nathan Bromham, Jennifer S Hilgart
This updated Cochrane systematic review looked at 23 RCTs using Oxycodone for cancer -related pain. Meta-analyses showed no significant difference between controlled release and immediate release in pain intensity or adverse effects.
Meta-analysis of the adverse events found a significantly lower risk of hallucinations than with morphine with no other differences, but the studies used were of low quality, so the authors suggest interpreting this finding with caution.
Other studies comparing Oxycodone with other opioids showed no clear superiority or inferiority in either pain relief or adverse events. The results lead the authors to suggest that Oxycodone can be used as a first line alternative to Morphine but as Morphine remains cheaper, Morphine remains the first line opioid of choice.
Impact of specialist palliative care on coping with Parkinson’s disease: patients and carers
Nathan J Badger, Dorothy Frizelle, Debi Adams, Miriam J Johnson
This short report describes a qualitative study looking at whether and how, access to specialist palliative care (SPC) services affected patients’ and cares’ coping with Parkinsons Disease (PD).
Three patients and five carers had semi-structured interviews and identified a number of Parkinsons’ related stressors. The interviewers identified three themes about how palliative care services affected the participant’s coping with PD: Managing uncertainty, impacts on self; and SPC maintaining a positive outlook.
The authors suggest that SPC acknowledged death and the complex, holistic nature of PD suggesting that SPC helps patients and carers cope with some effects of the disease and supports increased consideration of palliative need and provision for this neglected group.
The engagement of young people in their own advance care planning process: A systematic narrative synthesis.
A systematic narrative synthesis from the University of Lancaster exploring advanced care planning (ACP) in young adults. The authors highlight the fundamental need to understand barriers and facilitators to young people’s engagement with ACP in order to assist in the fulfilment of their wishes and inform future practice.
Although some barriers, including poor communication, relationship conflicts and lack of training for healthcare professionals were recognised, a lack of rigorous, high-quality research limited conclusions and the authors call for future studies to facilitate ACP engagement in young people in the future.
Hughes, B. O’Brien, M. Flynn, A. Knighting, K
Palliative Medicine. 2018 Jul;32(7):1147-1166.
International palliative care research in the context of global development: a systematic mapping review
Palliative care has global support from the World Health Organisation but has failed to attract attention from funding agencies and policymakers.
The authors of this review argue that an international approach to palliative research is required to put palliative care on the global map. They performed a systematic mapping review of international studies to inform future planning.
They concluded that international palliative care research is in its infancy but is developing. They identified gaps in the evidence, highlighting that observational studies predominate and a paucity of interventional research demonstrating the cost-effectiveness of palliative interventions, this therefore limits engagement with international policymakers.
Clark, J. Gardiner, C. Barnes, A.
BMJ Supportive & Palliative Care 2018;8:7-18.
Breakthrough cancer pain (BTcP) management: a review of international and national guidelines
The main objective of this review was to determine the continued relevance of the APM 2008 breakthrough cancer pain guidelines by comparing them with current national and international guidelines.
In general there was good agreement between the specific BTcP guidelines. The main areas of contention were identified as being the type and dosage of rescue medication.
The 2008 APM guidelines relied on expert opinion and low-grade evidence. In the interim, few studies have added to the evidence base. The authors recommend that more head-to-head studies of rapid-onset opioids versus oral opioids are needed to support clinical practice, as well as an international consensus on the definition and diagnosis of BTcP.
BMJ Supportive and Palliative Care 2018; 8:241-249.
Davies AN, Elsner F, Filbert MJ et al.
Duration and determinants of hospice-based specialist palliative care: a national retrospective cohort study
This study of 64 UK hospices aimed to identify the patient and organisational factors that influence the duration of hospice-based palliative care (inpatient, community or outpatient) in the UK prior to death. Patients with a progressive, advanced illness with a prior hospice referral who died in 2015 were included.
The median time for referral to death was 48 days. 40% of all referrals were made within 30 days of death. Increasing age and non-cancer diagnosis were significant predictors of fewer days of hospice care prior to death.
The authors’ conclusions included that there may be a need for reorientation of services to both older age groups and non-cancer conditions and suggest that further research is needed to understand the reason for such late referrals to UK hospice care.
Palliative Medicine 2018; 32:1322-1333.
Allsop MJ, Ziegler LE, Mulvey MR et al.
Overall Survival in Older Patients with Caner
A growing number of patients with cancer are older adults. We sought to identify the predictors for overall survival (OS) in older adults with solid tumour and haematological malignancies between January 2013 and December 2016.
Retrospective cohort study. A comprehensive geriatric assessment was performed, with a median follow-up of 12.8 months. Analysis: univariate and multivariate Cox proportional hazards regression analysis.
Overall survival in older patients with cancer. Edwards BJ, Zhang Z. et al
BMJ Supportive and Palliative Care; online doi: 10.1136/bmjspcare-2017-001452
Please click here for full article
Impact of Different Exercise Programs on Severe Fatigue in Patients Undergoing Anticancer Treatment. A Randomized Controlled Trial
Markus K. Schuler, MD, MSc, Leopold Hentschel, Dipl-Psych, Wadim Kisel, Michael Kramer, Dipl-Psych, Felicitas Lenz, BSc, Beate Hornemann, Dipl-Psych, Julia Hoffmann, Stephan Richter, MD, Gerhard Ehninger, MD, Martin Bornh€auser, MD, and Frank Kroschinsky, MD
Journal of Pain and Symptom Management January 2017; Vol. 53; No. 1; 57-66
This randomised controlled trial looked at the impact of a structured individual sports program on fatigue in patients with advanced cancer (undergoing curative and palliative treatments) over 12 and 24 weeks. They found no significant difference in general fatigue at 12 weeks but a significant reduction in mental fatigue both at 12 and at 24 weeks for the groups taught the exercise program and worsening of fatigue in the control group. There was a non significant advantage for the group that had twice weekly therapist supervision as well as the exercise program but as these patients had the worst baseline scores of fatigue this cannot be attributed to the supervision. Although their numbers are small and the study was not blinded, this study adds to the evidence for the advantages of physical therapy in improving fatigue in a heterogenous sample of patients, many of whom were having palliative treatment.
Evidence still insufficient that advance care documentation leads to engagement of healthcare professionals in end-of-life discussions: A systematic review
Ebony Lewis, Magnolia Cardona-Morrell, Kok Y Ong, Steven A Trankle and Ken Hillman
Palliative Medicine 2016, Vol 30(9), 807-824
This systematic review looked for evidence that the presence of Advance Care Documentation (ACD) enhanced clinician’s involvement in initiating End of Life (EOL) discussions and whether that engagement was perceived or measured as effective. 24 studies were included involving over 23,000 participants with most of the studies being qualitative in nature. The review only found one well designed cohort study that provided high level evidence of a statistical significant association indicating that the ACD prompted an EOLC discussion. The authors’ conclusion is that the evidence to date cannot provide an answer to the effectiveness of ACD on triggering conversations about EOL wishes despite most studies finding staff had a positive attitude to the use of ACD as instruments to improve communication.
Prepared by Helen McGee, on behalf of the APM Science committee
Does simulation have a role in palliative medicine specialty training?
Authors: Lucy N Walker, St Catherine’s Hospice, Scarborough, UK. Lynne Russon, Sue Ryder Wheatfields Hospice, Leeds, UK
BMJ Supportive & Palliative Care
This interesting pair of papers gives an insight into the use of simulation in training for medical students and Palliarive Medicine trainees. It’s clear the training was valued and there are some tips on how to run such training.
Somatostatin Analogues Compared With Placebo and Other Pharmacologic Agents in the Management of Symptoms of Inoperable Malignant Bowel Obstruction: A Systematic Review
George P. Obita, MB, ChB, MPHCM, MSc, MFPH’Correspondence information about the author MB, ChB, MPHCM, MSc, MFPH George P. ObitaEmail the author MB, ChB, MPHCM, MSc, MFPH George P. Obita, Elaine G. Boland, MD, MRCP, PhD, David C. Currow, BMed, MPH, PhD, FRACP, FAHMS, Miriam J. Johnson, MBChB (Hons), FRCP, MD, Jason W. Boland, MB, BChir, FRCP, PhD
JPSM – Journal of Pain and Symptom Management
There’s been a lot of debate about the use of these drugs recently. This is a great starting point for those interested. The implications for future research section is worth reading for anyone who is thinking about doing any further work in the area.
Prepared by Paul Perkins, on behalf of the APM Science committee
Determinants of hospital death in haematological cancers: findings from a qualitative study
A useful study examining why haematological patients die in hospital. While it reinforces the complex and uncertain trajectory of some of these conditions there is a distinction drawn between younger and older patients. There is also a patient expectation to be able to access hospital and on-going supportive treatment which community and hospice settings cannot match. The final theme is that it is not always practical to manage a death at home if complicated. It is probably worth sharing with your local haematologist as includes bereaved relatives views.
Effect of communication skills training on outcomes in critically ill patients with life-limiting illness referred for intensive care management: a before-and-after study
A brave attempt to do a communication skills intervention on the effects of ITU admissions. The study was in Australia but could equally apply to the UK. However the focus was on goals of care and the intervention with simulated patients around this. It is then not surprising the documentation related to this increased but overall admission rate and outcomes did not. The study focused on those admitted to the ICU and you are left wondering if the focus should be on preventing these admissions in the first instance. As a recent conference slide said “ one hour of difficult conversation can prevent two weeks of ITU admission and death”. There is increasing evidence of who is likely to benefit from admission and who won’t – the paper talks about disease specific trajectories to focus on.
The costs, resource use and cost-effectiveness of Clinical Nurse Specialist–led interventions for patients with palliative care needs: A systematic review of international evidence
Shulman C, Hudson B, Low J, et al. End-of-life care for homeless people: A qualitative analysis exploring the challenges to access and provision of palliative care. Palliative Medicine (2017): 0269216317717101.
This paper uses interviews with current and formerly homeless people, homelessness staff, and health and social care professionals to explore end of life care delivery for homeless people.
The findings highlight that homeless people often remain in hostels as health deteriorates, and sometimes for end of life care, due to a lack of alternatives. The authors conclude that person centred care is often lacking for this vulnerable group, and that improved training and in-reach into hostels may be beneficial.
Article Available at: click here
Salamanca-Balen N, Seymour J, Caswell G, et al. The costs, resource use and cost-effectiveness of Clinical Nurse Specialist–led interventions for patients with palliative care needs: A systematic review of international evidence.Palliative Medicine (2017): 0269216317711570.
There is evidence that clinical nurse specialists can improve quality of care and potentially improve costs, but this systematic review points out the great variation in the quality of evidence, and how the impact of nurse specialists is measured. More high quality studies are needed to pinpoint the settings and models of care in which nurse specialists may have the greatest impact.
Article available at: click here
Prepared by Simon Etkind, on behalf of the APM Science Committee
Mayland CR, Mulholland H, Gambles M, et al
How well do we currently care for our dying patients in acute hospitals: the views of the bereaved relatives?
BMJ Supportive & Palliative Care 2017;7:316-325.
This paper presents the results of a survey of bereaved relatives of patients who died in hospitals. Quite a few carers were not contacted for various sensible reasons. Of those who responded only 4% said that staff did not do enough to control the patient’s pain. Relatives’ ratings of communication were not so high. This paper might help those of us involved in training hospital staff.
George R, Prasoona TS, Kandasamy R, et al
Improving malodour management in advanced cancer: a 10-year retrospective study of topical, oral and maintenance metronidazole
BMJ Supportive & Palliative Care 2017;7:286-291.
Here’s some practical advice for the management of malodour and a great new ladder – the SNIFF ladder.
Does the EQ-5D capture the concerns measured by the Palliative care Outcome Scale? Mapping the Palliative care Outcome Scale onto the EQ-5D using statistical methods
Mendwas D Dzingina1, Paul McCrone2, Irene J Higginson1
Palliative Medicine, vol. 31, 8: pp. 716-725 click here
It’s helpful when academics can guide us as to the best quality of life or health economic measures for studies. The EQ-5D may not be the best tool for measuring economic outcomes in palliative care research. The author’s question how appropriate economic analysis is in palliative care is and argue that further research is needed in this area.
Prepared by Paul Perkins, on behalf of the APM Science Committee
Randomised clinical trial of early specialist palliative care plus standard care versus standard care alone in patients with advanced cancer: The Danish Palliative Care Trial
Mogens Groenvold, Morten Aagaard Petersen, Anette Damkier, Mette Asbjoern Neergaard,Jan Bjoern Nielsen, Lise Pedersen, Per Sjøgren, Annette Sand Strömgren, Tove Bahn Vejlgaard, Christian Gluud, Jane Lindschou, Peter Fayers, Irene J Higginson and Anna Thit Johnsen
Palliative Medicine 2017, Vol 31(9), 814-824
Previous studies have shown improved outcomes and improved survival in cancer patients referred early to specialist palliative care. This Danish multicentred randomised clinical trial compared early referral to specialist palliative care vs standard care alone. Patients with advanced cancer were screened for palliative care needs and those exceeding a predefined threshold were eligible. 145 patients were randomised to specialist palliative care and 152 to standard care. There was no effect on the primary outcome of change in primary need (the most severe of seven EORTC QLQ-C30 scales) nor any difference in the secondary outcomes including survival with the possible exception of nausea and vomiting where there was a larger but non-significant benefit in the palliative care group. Some explanations for the negative results such as the teams involved not having the resources to cope with the new model or prioritising other patients are suggested by the authors.
Initial perceptions of palliative care: An exploratory qualitative study of patients with advanced cancer and their family caregivers
Anna Collins, Sue-Anne McLachlan and Jennifer Philip
Palliative Medicine 2017, Vol 31(9) 825-832
This cross-sectional, prospective, qualitative study from Australia interviewed patients with advanced cancer and their carers around their initial perceptions of palliative care. They interviewed 30 patients and 25 carers and identified 3 main themes; (1) diminished care, seen as a lesser treatment (2) diminished possibilities for hopes and treatments focused on cure and (3) diminished choices for the circumstances of their care. Although a number of studies have demonstrated the benefits of early palliative care involvement for patients with advanced cancer, there remains an issue with late referrals and the authors suggest there is a significant opportunity to help patients and carers understand palliative care and reduce the stigma associated with a referral.
Prepared by Dr Helen McGee, on behalf of the APM Science Committee
Continuation of non-essential medications in actively dying hospitalised patients
This article reports the use of 11 non-essential medications in actively dying patients, using secondary data from the Best Practices for End-of-Life Care for Our Nation’s Veterans trial. The electronic medical records of 5476 deceased patients were reviewed. The article reports that non-essential medications were administered to actively dying patients, but that interventions to enhance recognition of the dying phase facilitated the discontinuation of these medications.
Shared decision-making at the end of life: A focus group study exploring the perceptions and experiences of multi-disciplinary healthcare professionals working in the home setting
This qualitative article investigates the perceptions and experiences of a multi-disciplinary team with Shared Decision Making (SDM) at the end of life. The researchers interviewed 43 health and social care professionals who frequently engaged in home-based palliative care. The article reports that conceptual confusion, uncertainty of the process, and organisational issues all impede the process of SDM. The article concludes by highlighting the complexity of moving from the rhetoric of SDM to the reality at individual, process, and system levels.
Prepared by Prof Paddy Stone, on behalf of the APM Science Committee
The Science Committee’s articles of the month from the APM journals.
Palliative Care Screening and Assessment in the Emergency Department: A Systematic Review
George N, Phillips E, Zaurova M, Song C, Lamba S, Grudzen C.
J Pain Symptom Manage. 2016 Jan;51(1):108-119
This systematic review included 7 articles addressing palliative care interventions in the emergency department. The interventions assessed in all studies increased palliative care referral, but the study outcomes varied widely and six of the seven studies required additional staff to perform screening for palliative care needs in the emergency department. Standardization of palliative care screening in the emergency department is recommended.
Variations in specialist palliative care referrals: findings from a population-based patient cohort of acute myeloid leukaemia, diffuse large B-cell lymphoma and myeloma.
Howell DA, Wang HI, Roman E, Smith AG, Patmore R, Johnson MJ, Garry AC, Howard MR.
BMJ Support Palliat Care. 2015 Dec;5(5):496-502.
This cohort study collected information on patients with three haematological malignancies. Of the 323 included patients, 155 (48%) were referred to specialist palliative care, with patients living longer or having myeloma being more likely to be referred. People dying at home or hospice were more likely to have been referred to specialist palliative care services compared with those dying in hospital. The authors suggested further research to explore the reasons for specialist palliative care referral and non-referral, and differences in the preferred and actual place of death.
Elaine Boland, on behalf of the APM science committee
The Burden of Polypharmacy in Patients Near the End of Life
Michael J. McNeil, Arif H. Kamal, Jean S. Kutner, Christine S. Ritchie, Amy P. Abernethy
J Pain Symptom Manage. 2016;51(2):178–183
In a secondary data analysis of a multi-centre randomised trial, medication burden of 244 adults estimated to be in the last year of life taking a statin for primary cardiovascular disease prevention was evaluated. Patients took an average of 12 medications at enrolment and 11 medications at death or study termination. Antihypertensives, broncholytics/bronchodilators, laxatives, antidepressants, and gastric protection drugs were the most common classes of medications prescribed near the end of life.
Should we involve terminally ill patients in teaching medical students? A systematic review of patient’s views
Harris DG, Coles B, Willoughby HM.
BMJ Supportive & Palliative Care 2015;5:522–530.
A systematic review using narrative synthesis explored how terminally ill patients feel about being involved in undergraduate medical teaching. Seven studies with 269 patients (mostly hospice based) were included. Patients were generally in favour of being involved in teaching. Negative aspects included concerns about being physically examined; finding it tiring and feeling unable to decline.
Prepared by: Jason Boland, on behalf of the APM science committee
What are the views of hospital-based generalist palliative care professionals on what facilitates or hinders collaboration with in-patient specialist palliative care teams? A systematically constructed narrative synthesis
Firn J, Preston N and Walshe C
Palliat Med 2016; 30(3): 240-256
A systematic review using narrative synthesis explored collaboration between generalists in palliative care and specialist palliative care teams in hospital. Twenty-three studies were identified. Five themes were drawn from the literature.
Collaboration was seen as beneficial yet challenging. Communication between specialists and generalists, and clarification of the role of both were important in facilitating collaboration. An integrated approach between specialists and generalists seemed to enhance collaboration. The education provided by specialist teams was identified as a significant benefit of referring.
‘My body’s falling apart.’ Understanding the experiences of patients with advanced multimorbidity to improve care: serial interviews with patients and carers
Mason B, Nanton V, Epiphaniou E et al.
BMJ Support Palliat Care 2016; 6(1): 60-65
A multi-centre interview-based study explored the experiences of care of patients with two or more advanced illnesses. Patients were identified as likely to be in the last year of life. A total of 87 interviews were carried out, at 8-12 week intervals, with a total of 37 patients and 17 carers. Interpretive analysis was used.
Two themes were identified: ‘experiences of care’ and ‘understanding’ (of their illnesses). Patients and carers described a progressive physical decline, with struggles in coping with multiple care systems and multiple, frequently-changing medications. Deterioration was often attributed to ‘getting old’ rather than becoming more unwell, and little evidence of future care planning was described.
Prepared by Richard Kitchen, on behalf of the APM Science Committe
Andrew Davies, FRCP, Gill Mundin, BSc (Hons), Joanna Vriens, MRCP, Kath Webber, PhD, Alison Buchanan, RGN and Melanie Waghorn, RGN
Journal of Pain and Symptom Management 2016 Vol. 51, No.3 538-545
Nine cancer patients with salivary gland hypofunction underwent a series of three pharmacokinetic studies with the sublingual fentanyl orally disintegrating tablet (Abstral). The data suggests that salivary gland hypofunction negatively affects the pharmacokinetics of sublingual fentanyl orally disintegrating tablets (longer Tmax, lower Cmax, a lower AUC-30 and a lower AUClast). The use of a saliva substitute (water) or a saliva stimulant (pilocarpine) were equally effective in terms of optimizing the absorption of the sublingual fentanyl orally disintegrating tablet although this study did not compare this with patients with normal salivary gland function. Given that salivary gland hypofunction is very common in palliative care patients the authors suggest that patients are advised to moisten the oral mucosa before dosing or be prescribed a salivary stimulant.
Methicillin-resistant Staphylococcus aureus: Prevalence, incidence, risk factors, and effects on survival of patients in a specialist palliative care unit: A prospective observational study.
Aoife Gleeson, Philip Larkin, Cathal Walsh and Niamh O’Sullivan
Palliative Medicine 2016, Vol 30(4) 374-381
Data were collected for consecutive patient admissions to a 16-bed specialist palliative care unit in Ireland over an 18 month period resulting in 609 admissions for 466 individual patients. Prevalence of MRSA colonization was 11.59% with a 1 week incidence of colonization of 1.2%. Risk factors included high Waterlow score, high palliative performance scale score, MRSA prior to admission, admission from hospital, presence of urinary catheter or PEG tube and poor dietary intake. MRSA was eradicated in 8.1% with 62.2% of MRSA patients dying before completion of the eradication protocol calling into question the value of the eradication protocol. The authors suggest that MRSA screening be best restricted to high risk patients. MRSA did not significantly impact on survival but was significantly associated with having infection episodes and length of stay
Prepared by Helen McGee, on behalf of the APM Science Committee
Bregje Thoonsen, Stefanie H M Gerritzen, Kris C P Vissers, Stans Verhagen, Chris van Weel, Marieke Groot and Yvonne Engels
– BMJ Supportive & Palliative Care
Training GPs to recognise palliative patients a RCT – a very helpful paper demonstrating the use of a training program for GPs ( in Holland) that had a longer lasting effect over 15 months to keep them aware of likely patients who would be suitable for the GSF equivalent in the UK
Yolanda WH Penders, Judith Rietjens, Gwenda Albers, Simone Croezen, Lieve Van den Block
– Palliative Medicine Journal
A study looking at the differences in out of pocket expenses in the last year of life – useful to compare across Europe – the UK does well as the NHS meets this but there are lots of informal and hidden costs which are made explicit and a reminder of the expenses incurred not simply health related
Marieke H.J. van den Beuken-van Everdingen, MD, PhD, Laura M.J. Hochstenbach, MSc, Bert E.A.J. Joosten, PhD, Vivianne C.G. Tjan-Heijnen, MD, PhD, Daisy J.A. Janssen, MD, PhD
– Journal of Pain and Symptom Management
An updated meta-analysis and review of cancer pain – does not add new knowledge but for educational purposes and training it is a useful reminder that it is still significantly under treated outside of the expert area – reaffirmed by recent voices data on lack of pain relief with patients dying at home
Prepared by Ollie Minton, on behalf of the APM Science Committee
A Mixed-Methods, Randomized, Controlled Feasibility Trial to Inform the Design of a Phase III Trial to Test the Effect of the Handheld Fan on Physical Activity and Carer Anxiety in Patients With Refractory Breathlessness
Miriam Johnson, Sara Booth, David C. Currow, Lawrence T. Lam, Jane L. Phillips
– JPSM 2016; 51:807-815
A multisite, international, parallel, nonblinded, mixed-methods randomised controlled trial where patients were randomised to breathlessness self-management/exercise advice +/- fan. 43 completed the study and interviews showed patients found fans useful. They conclude that a definitive, multisite trial is feasible BUT it’s not going to happen – ‘the value of information for changing practice or policy is unlikely to justify the expense of such a trial, given perceived benefits, the minimal costs, and an absence of harms demonstrated in this study.’
Lucy Selman, Vicky Robinson, Lara Klass, Shaheen Khan, Rob George, Kate Shepherd, Rachel Burman, Jonathan Koffman
– BMJ Support Palliat Care 2016;6:231-236
This is a before and after evaluation of a 2 day End of Life Care course for hospital and community staff – 236 staff completed the course over 2 years. Quantitative and qualitative results showed participants valued the course. Further research is planned to optimise the intervention and determine the optimum trial methodology to evaluate its impact on patient, family carer and staff outcomes and cost-effectiveness.
Prepared by Paul Perkins, on behalf of the APM Science Committee
A recent publication in BMJ Supportive and palliative care illustrates the potential value of routinely collected clinical data and shows how clinical services can engage in collaborative service improvement projects even if they do not necessarily have the infrastructure to participate in randomised controlled trials (Hatano et al. Pharmacovigilance in hospice/palliative care: the net immediate and short-term effects of dexamethasone for anorexia.
Palliative Medicine has recently published the abstracts of the 9th World Research Congress of the European Association for Palliative Care (doi:10.1177/0269216316646056). For those who were unable to attend the conference (and even those who were there but were unable to absorb all of the information that was presented), this provides a valuable resource. It is a valuable resource which documents the wide variety of research occurring across Europe. It is worth searching the abstract book for terms such as “randomised controlled trial” or “systematic review” in order to get a feel for how the quality of the evidence available to help inform our decision making is slowly growing.
Prepared by Paddy Stone, on behalf of the APM Science Committee
A secondary analysis looking at how patients’ define ‘acceptable’ pain intensity on a numerical rating scale.
Wendy H Oldenmenger1⇑ Carin CD van der Rijt1,2 Department of Medical Oncology, Erasmus MC Cancer Institute, Rotterdam, The Netherlands Netherlands Comprehensive Cancer Organisation, Utrecht, The Netherlands Wendy H Oldenmenger, Department of Medical Oncology, Erasmus MC Cancer Institute
From “Breakthrough” to “Episodic” Cancer Pain? A European Association for Palliative Care Research Network Expert Delphi Survey Toward a Common Terminology and Classification of Transient Cancer Pain Exacerbations.
A Delphi expert survey attempting to re-categorise and redefine breakthrough cancer pain
Løhre ET1, Klepstad P2, Bennett MI3, Brunelli C4, Caraceni A4, Fainsinger RL5, Knudsen AK6, Mercadante S7, Sjøgren P8, Kaasa S6; European Association for Palliative Care Research Network.
A letter responding to the above article questioning the terminology and definitions used
Andrew Davies, Andrew Dickman, Paul Farquhar-Smith, Katherine Webber, John Zeppetella
Journal Pain Symptom Manage DOI:http://dx.doi.org/10.1016/j.jpainsymman.2016.06.002
Prepared by Katherine Webber, on behalf of the APM Science Committee
Erica Witkamp, Mirjam Droger, Rien Janssens, Lia van Zuylen, and Agnes van der Heide. J Pain Symptom Manage 2016;52:235e242.
This is a secondary qualitative analysis of relatives’ comments and answers to 10 open questions on the quality of dying in a general university hospital in the Netherlands. 451 questionnaires were returned and analysed from 951 sent to relatives of deceased adult patients. If bereaved relatives feel acknowledged by the trust staff in their role as caregiver, representative, and close relative, be involved in decision making and be informed in a timely fashion, then they felt they were in a better position to represent the patient.
Katherine Bristowe, Steve Marshall and Richard Harding
Palliative Medicine 2016, Vol. 30(8) 730– 744
This systematic review evaluated the evidence of the bereavement experiences of lesbian, gay, bisexual and/or trans people who have lost a partner. There were 13 studies of 555 individuals. Loss of the primary relationship is a universal experience, regardless of sexual or gender identity. Additionally experiences around the time of death were often shaped by interactions with healthcare professionals, legal and financial issues, and HIV or AIDS. Social and familial support, and if their relationship was disclosed openly also influenced bereavement
Prepared by Elaine Boland, on behalf of the APM Science Committee
J Pain Symptom Manage. 2016 Oct 31
Diamond EL, Panageas KS, Dallara A, et al
This case-control study examined factors associated with acute hospital admission within one month of death in 385 patients with GBM. Nearly half were admitted within a month of death, mostly to manage neurologic decline. Of these, a third were admitted to ICU. In-hospital chaplaincy and being in a clinical trial, were associated with hospital admission within one month of death.
J Pain Symptom Manage. 2016 Sep 29.
Poulain P, Berleur MP, Lefki S et al
A multicentre randomized controlled trial was used to assess the effectiveness of stop-and-go and progressive methadone titration in patients with cancer pain who did not have adequate pain relief or side effects from strong opioids. Most patients had improvement in pain (≥2 point reduction on the visual scale and a pain score <5 for 2 consecutive days); this was maintained for the 56 day follow-up period; there was no difference between groups. In both groups, 84% had adverse events; respiratory depression occurred in 12-14%.
Prepared by Jason Boland, on behalf of the APM Science Committee