External papers of the month
Each month, we select two papers of interest, one representing the work of our department, and one reflecting research from the wider palliative research community.
Each paper is accompanied by a brief explanation of who chose it, and why it was chosen. We also endeavour to contact authors of external papers to alert them to our interest. We hope you find these papers of interest too.
Add title here
Chosen by Anna Roach
Zernikow, B., Szybalski, K., Hübner-Möhler, B., Wager, J., Paulussen, M., Lassay, L., & Oommen, P. T. (2018). Specialized paediatric palliative care services for children dying from cancer: A repeated cohort study on the developments of symptom management and quality of care over a 10-year period. Palliative medicine, 0269216318818022.
This paper conducted a repeated cross-sectional cohort study across 10 years in paediatric oncology departments in Germany to assess symptom management and quality of care developments. They led semi-structured interviews with parents bereaved of a child with cancer and spoke to departments about paediatric palliative care infrastructure. Over the 10 year period, parents’ perception of symptom burden, symptom occurrence and effectiveness of symptom-related treatment remained constant. The availability of paediatric palliative care increased as did the quality and satisfaction of care. They concluded that better paediatric palliative care infrastructure is associated with better quality of care and higher parents’ satisfaction and this should be implemented to improve outcomes for children who are facing terminal cancer diagnoses.
Chosen by Dr Mevhibe Hocaoglu
Petersen, M. A., et al. (2018). "The EORTC CAT Core—The computer adaptive version of the EORTC QLQ-C30 questionnaire." European Journal of Cancer 100: 8-16.
Paper by Petersen et al (Petersen, Aaronson et al. 2018) provides a detailed overview of the research program to develop CAT versions of EORTC-QLQ-C30’s 14 functional domains to reduce participant burden, improving relevance as well attaining measurement precision. The study steps include a literature search, expert consultation, patient interviews and field testing.
Chosen by Dr Emeka Chukwusa
Smallwood N, Moran T, Thompson M, Eastman P, Le B, Philip J. Integrated respiratory and palliative care leads to high levels of satisfaction: a survey of patients and carers. BMC Palliative Care. 2019;18:7. https://doi.org/10.1186/s12904-019-0390-0.
The study aimed to explore patients and carers’ experience of an integrated palliative care services known as the Advanced Lung Diseases Services (ALDS) in order to identify valued aspects of the care. A qualitative survey of patients who used the ALDS between 2016 and 2017 was assessed with a patient satisfaction assessment tool. Data were analysed using descriptive statistics. The study found that continuity of care, high-quality communication, and feeling cared for were greatly valued and highlight simple but important aspects of care for all patients.
Chosen by: Lisa Brighton
Improving living and dying for people with advanced dementia living in care homes: a realist review of Namaste Care and other multisensory interventions
Frances Bunn, Jennifer Lynch, Claire Goodman, Rachel Sharpe, Catherine Walshe, Nancy Preston, and Katherine Froggatt
The authors conducted a realist review to develop an explanatory account of how the Namaste Care intervention might work, on what outcomes, and in what circumstances for people living with dementia in care homes. They found that Namaste Care can provide structured access to social and physical stimulation, equip care home staff to cope effectively with complex behaviours and variable responses, and provide a framework for person-centred care.
Please see here for the full paper: https://doi.org/10.1186/s12877-018-0995-9
Chosen by Lucy Fettes:
Title: Effect of Exercise Intervention on Functional Decline in Very Elderly Patients During Acute Hospitalization: A Randomized Clinical Trial
Authors: Nicolas Martinez-Velilla,Alvaro Casas-Herrero, Fabrico Zambom-Ferraresi, Mikel Lopez Saez de Asteasu, Alejandro Lucia, Arkaitz Galbete, Agurne Garcia-Baztan, Javier Alonso-Renedo, Belen Gonzalez-Glaria, Maria Gonzalo-Lazaro, Itziar Apezteguia Iraizoz, Marta Gutierrez-Valencia, Leocadio Rodriguez-Manas, Mikel Izquierdo.
A RCT to assess effectiveness of a multicomponent exercise intervention on functional status of 370 very elderly patients during acute-care hospitalisation. At discharge, the exercise intervention showed significant benefits in functional independence (Barthel index and Short Physical Performance Battery (SPPB)), cognitive function and quality of life, compared to usual care.
Chosen by Dr Deokhee Yi:
McCaffrey, Nikki, Thomas Flint, Billingsley Kaambwa, Belinda Fazekas, Debra Rowett, David C Currow, Janet Hardy, Meera R Agar, Steve Quinn, and Simon Eckermann. “Economic Evaluation of the Randomised, Double-Blind, Placebo-Controlled Study of Subcutaneous Ketamine in the Management of Chronic Cancer Pain.” Palliative Medicine, (October 2018). doi:10.1177/0269216318801754.
A within-trial analysis to evaluate the cost-effectiveness of subcutaneous ketamine versus placebo (normal saline) in patients unresponsive to opioids and co-analgesics. Toxicity was higher and health related quality of life was worse for ketamine participants. Ketamine is neither an effective nor cost-effective treatment for refractory pain in advanced cancer patients.
Chosen by Dr Kennedy Nkhoma
Title: Self-management of patients with mild COPD in primary care: randomized controlled trial
Authors: Kate Jolly, Manbinder S Sidhu, Catherine A Hewitt, Peter A Coventry, Amanda Daley, Rachel Jordan, Carl Heneghan, Sally Singh, Natalie Ives, Peymane Adab, Susan Jowett, Jinu Varghese, David Nunan, Khaled Ahmed, Lee Dowson, David Fitzmaurice
Aim: Evaluate effectiveness of a nurse-led telephone health coaching intervention vs standard information leaflet among mild COPD patients
Design and setting: Multicentre RCT, 71 GPs in four areas of England
Participants: 289 intervention, 288 control with MRC dyspnoea scale of 1 or 2
Primary Outcome: QOL (SGRQ-C)
Results: No significant differences at 12 months in SGRQ-C. Good fidelity of the intervention. Intervention group reported greater physical activity.
Comment: Self-management is a good model in chronic illness and leads to positive health behaviour changes such as smoking cessation and physical activity.
Chosen by Dr Stephen Ashford
Advance care planning in rehabilitation: An implementation study.
Krystal SONG, Bhasker AMATYA, and Fary KHAN
Journal of Rehabilitation Medicine 2018; 50
Advance care planning (ACP) is the planning of future healthcare and treatment preferences to guide clinical decision-making when the individual is unable to communicate decisions due to lack of capacity. The authors evaluated the effectiveness of an ACP programme in an inpatient rehabilitation setting in Australia with patients with chronic illnesses.
Chosen by Marsha Dawkins
Abigail E Vallance, Nicola S Fearnhead, Angela Kuryba, James Hill, Charles Maxwell-Armstrong, Michael Braun, Jan van der Meulen, Kate Walker,
Effect of public reporting of surgeons’ outcomes on patient selection, “gaming,” and mortality in colorectal cancer surgery in England: population based cohort study. BMJ 2018; 361 https://doi.org/10.1136/bmj.k1581
This national cohort study examined the effect of public reporting of surgeon specific outcome on 90 day mortality of patients with colorectal cancer undergoing elective surgery.
The proportion of patients undergoing surgery and categorisation of resections did not change. Observed 90 day mortality fell, possibly due to improved perioperative planning.
Chosen by Dr Adejoke Oluyase
Aoun SM, Breen LJ, White I, Rumbold B, Kellehear A. What sources of bereavement support are perceived helpful by bereaved people and why? Empirical evidence for the compassionate communities approach.
This cross-sectional survey explored provision of bereavement support in the community. 678 bereaved people responded. The study found that the most frequently used sources of support were informal such as family, friends and funeral providers. The professional sources were the least used and also perceived to be most unhelpful.
Chosen by Dr Anna Weil
Depner, R. M. et al. (2018) ‘“People don’t understand what goes on in here”: A consensual qualitative research analysis of inmate-caregiver perspectives on prison-based end-of-life care’, Palliative Medicine. doi: 10.1177/0269216318755624.
This qualitative interview study explores an innovative prison-based end-of-life care programme that trains prison-inmates to become caregivers to those dying in the prison system. This is one of 69 similar programmes from across the USA, and is the first study to explore the inmate-caregiver perspective in depth. This paper is of importance as it addresses a vulnerable and under-represented group in palliative care research. Potential benefits of the programme were identified for dying inmates, inmate-caregivers and healthcare staff working in prisons. The authors recognise that although there are differences across international systems, findings from this study may be relevant and transferrable to other prison settings outside of the USA.
Chosen by Dr Ping Guo
Ng AYM & Wong FKY. Effects of a home-based palliative heart failure program on quality of life, symptom Burden, satisfaction and caregiver burden: a randomized controlled trial. Journal of Pain and Symptom Management 2018; 55: 1-11.
This randomised controlled trial undertaken in Hong Kong demonstrates that a home-based palliative heart failure programme (HPHF) is effective in enhancing the quality of life of end stage heart failure patients, increasing patient satisfaction with care, and reducing caregiver burden. The HPHF group received a 12-week structured programme with regular home visits/telephone calls, using a transitional care framework and holistic palliative principles. This trial highlights the importance of introducing palliative care into heart failure management.
Chosen by Anna Bone
Gilissen J, Pivodic L, Gastmans C, Vander, Stichele RV, Deliens L, Breuer E, Van den Block L. How to achieve the desired outcomes of advance care planning in nursing homes: a theory of change. 2018 BMC Geriatrics 18:47
Using Theory of Change approach, this study describes the hypothetical causal pathways between advance care planning (ACP) and intended outcomes in the nursing home setting in Belgium. This is in response to frequent calls (e.g. MORECARE statement) for more explicit outlining of theory, rationale or logic for how an intervention is expected to work. Authors combined findings from a contextual analysis, systematic review of the literature, and two stakeholder workshops to develop a comprehensive visual Theory of Change map, which will inform future feasibility testing of the ACP intervention in nursing homes.
Chosen by Clare Ellis-Smith
Lamahewa K, Mathew R, Iliffe S, Wilcock J, Manthorpe J, Sampson EL, Davies N. A qualitative study exploring the difficulties influencing decision making at the end of life for people with dementia. Health Expect. 2018;21:118–127. https://doi.org/10.1111/hex.12593
This qualitative study explores the difficulties of decision making for practitioners and family members at the end of life for people with dementia. Challenges relate to providing coherent care across systems. Uncertainty and conflict for practitioners results from the unpredictable progression of the disease, and relatives’ uncertainty and conflict relates to deciding what the person with dementia would have wanted. Preparedness for the end of life may have a powerful positive influence on decision making between practitioners and family members.
Chosen by Laura Cottrell
Schuurman, N., Martin, M., Crooks, V.A., & Randall, E. (2018). The development of a spatial palliative care index instrument for assessing population-level need for palliative care services. Heath & Place, 49, 50-58.
This paper describes the development of an innovative tool, the Palliative Care Index (PCIX), which is designed to enable the spatial determination of population-level potential need for use of palliative care services. Specifically, the PCIX can help to identify and visually represent areas where heightened need for palliative care services can be anticipated. It uses readily available census data and has broad application for any jurisdiction, thus it is an easily transferable decision-making tool. I chose this article because the PCIX is an innovative tool with predictive capabilities, which can thus assist in planning for future palliative care provision. The development of the PCIX also underscores the benefits of cross-disciplinary work in research.
Chosen by Cathryn Pinto
Aoun, S. M., Ewing, G., Grande, G., Toye, C., & Bear, N. (2017). The Impact of Supporting Family Caregivers Before Bereavement on Outcomes After Bereavement: Adequacy of End-of-Life Support and Achievement of Preferred Place of Death. Journal of Pain and Symptom Management.
This paper highlights the benefit of routinely assessing and supporting family caregivers’ needs in palliative care. The authors developed an interesting intervention using the Carer Support Needs Assessment Tool (CSNAT). Outcomes for family caregivers were measured post-bereavement. The findings showed that the intervention had a positive impact; family caregiver’s who received the CSNAT intervention reported that they received adequate support, had fewer unmet needs and achieved the patient’s preferred place of death. These findings demonstrate the importance of systematically supporting family caregivers in palliative care services, well before the patient’s death.
Chosen by Dr Natasha Lovell
Wade, J., Mendonca, S., Booth, S., Ewing, G., Gardener, C. and Farquhar, M., 2017. Are within-person numerical rating scale (NRS) ratings of breathlessness “on average” valid in advanced disease for patients and for patients’ informal carers?. BMJ Open Respiratory Research, 4(1).
The Numerical Rating Scale (NRS) can be used to assess patient reported breathlessness, commonly assessing worst breathlessness (NRS-Worst), current breathlessness (NRS-Now) and on average breathlessness (NRS-Average). This paper aimed to identify whether extreme (NRS-Worst) or current (NRS-Now) breathlessness influence patient reported average breathlessness (NRS-Average) using the Numerical Rating Scale (NRS). Data were collected within three studies and key variables were pooled (n=561). Cases where participants reported a paradoxical average (average> worst) were identified (n=45). NRS ratings of average breathlessness were then assessed for fit to the Peak/ End rule. Results showed a high positive correlation between memory based reporting and responses as predicted by the Peak/ End rule, suggesting that the reporting of average breathlessness is influenced by currently breathlessness. The NRS requires further standardisation to enable informed interpretation.
Chosen by Alice Firth:
Brereton L, Clark J, Ingleton C, et al. What do we know about different models of providing palliative care? Findings from a systematic review of reviews. Palliative Medicine. 2017; 31: 781-97.
This systematic review of reviews identifies the existing range of models of palliative care that have been evaluated. Much of the evidence found relates to home-based palliative care, although some models are delivered across care settings. The authors found that the components of the interventions were under-reported however Irrespective of setting or patient characteristics, models of palliative care appear to show benefits. The authors conclude that, much more detailed and systematic reporting of the components is essential.
Chosen by Cheng-Pei Lin
Sudore, R.L., et al., Defining Advance Care Planning for Adults: A Consensus Definition From a Multidisciplinary Delphi Panel. J Pain Symptom Manage, 2017. 53(5): p. 821-832.e1.
The aim of the study is to develop a consensus definition of ACP for adult which could be used to guide the implementation and measurement of ACP clinical, research and policy initiatives. The authors convened a 10 rounds Delphi panel including multidisciplinary, international ACP experts of 52 clinicians, researchers and policy leaders from four countries (e.g. USA, Canada, Australia and Netherland) and a patient advisory committee with 13 participants. Content analysis was used to analyse the qualitative data from the panel members.
The result of this paper is that the panel achieved a final consensus one-sentence definition and accompanying goals statement as followed,
‘Advance care planning is a process that supports adults at any age or stage of health in understanding and sharing their personal values, life goals, and preferences regarding future medical care. The goal of advance care planning is to help ensure that people receive medical care that is consistent with their values, goals and preferences during serious and chronic illness.’
This might be the first work in terms of developing a consensus definition of ACP since there is no unifying definition about ACP.
Chosen by Joanna Davies
Shulman C, Hudson BF, Low J, Hewett N, Daley J, Kennedy P, Davis S, Brophy N, Howard D, Vivat B, Stone P. End-of-life care for homeless people: A qualitative analysis exploring the challenges to access and provision of palliative care. Palliat Med. 2017 Jun 1:269216317717101. doi: 10.1177/0269216317717101. [Epub ahead of print]
An extensive piece of qualitative work drawing attention to the fact that ‘many homeless people are dying in unsupported, unacceptable situations’. The authors highlight that this rapidly growing population face a lack of options for care at the end of life, with hospitals, hospices and care homes typically ill-equipped to cope with alcohol and drug use, and hostels often poorly supported to care well for dying people. They make the case for urgent expansion of specialist palliative care outreach work, suggest much earlier planning of care preferences incorporated into more general discussions with homeless people about their health choices and future aspirations, and raise a question about whether new dedicated ‘shelter based hospice’ services similar to those operating in Canada might be needed to cope with growing demand for care.
Chosen by Dr Emeka Chukwusa
Naruse T, Matsumoto H, Fujisaki-Sakai M, Nagata S. Measurement of special access to home visit nursing services among Japanese disabled elderly people: using GIS and claim data. BMC Health Services Research BMC series – open, inclusive and trusted 201717:377 DOI: 10.1186/s12913-017-2322-0.
The study examined the association between Home Visit Nursing Service (HVNs) usage and the proportion of elderly population (i.e. aged >=75 years) living within 10 minutes drive-time from HVN agencies. The results indicate that elderly population living within a reachable distance of 10 minutes from HVN agencies were significantly more likely to use HVN service (Odd Ratio: 1.938, Confidence Interval 1.265 - 2.967). The finding suggests that service access is an important predictor of HVNs usage. This paper was chosen because it applied a novel technique (Geographical Information Systems) to explore the importance of service access on usage.
Chosen by Dr Simon Etkind
Beernaert K, Smets T, Cohen J, Verhofstede R, Costantini M, Eecloo K, Van Den Noortgate N, Deliens L. Improving comfort around dying in elderly people: a cluster randomised controlled trial. The Lancet. 2017 May 16. doi: 10.1016/S0140-6736(17)31265-5
In this well conducted cluster randomised controlled trial undertaken on 10 geriatric wards, the authors aimed to assess the effectiveness of the Care Programme for the Last Days of Life (CAREFuL) at improving comfort and quality of care in the dying phase in elderly people.
241 patients were included, and there was evidence of improved nurse assessed comfort in the intervention group. On this basis, the authors argue that there is evidence to support wider implementation of this programme.
However the other primary outcomes - family assessed comfort and symptom management - did not improve, and family caregiver satisfaction was significantly lower in the intervention group. Further work is warranted to explain these findings. Qualitative exploration, as undertaken by Sleeman et al in relation to the Liverpool Care Pathway, might be a useful approach.
Chosen by Dr Katherine Sleeman
Lancaster H, Finlay I, Downman M, Dumas J. Commissioning of specialist palliative care services in England. BMJ SuPaC, March 2017. doi: 10.1136/bmjspcare-2016-001119
This paper, written by Baroness Ilora Finlay and three of her current / former Parliamentary researchers, reports the results of a Freedom of Information request to all 209 CCGs (Clinical Commissioning Groups) in England to assess their commissioning of palliative and end of life care services. The main results were: 1) that CCGs hold varying and often inadequate information about their local population (only 29 had information about the number of people in their area with palliative care needs); 2) where information was widely held (eg on budgets) there was huge variation – for example, CCGs allocated budgets ranging from £51.83 to £2329.19 per patient per annum; 3) results give us a comprehensive picture of services commissioned nationally – eg 78% CCGs commission 7 day admission to specialist palliative care beds, 45% of CCGs had no plans to update or review their palliative care services.
This paper is interesting for several reasons. 1) it uses an interesting methodology - a Freedom of Information request – as the basis for an academic paper; 2) the results are likely to be very influential in terms of calling for policy change and prioritisation of palliative care – indeed the study was prompted by a lack of information available during preparation for the Access to Palliative Care Bill; 3) the dissemination strategy was highly successful, the paper generated a huge amount of press interest, and was featured on the Radio 4 Today programme and other outlets.
In summary, this paper is a good example where an important ‘gap’ in knowledge, a simple methodology, and an effective dissemination strategy have combined to produce a highly influential and (I anticipate) impactful paper.
Chosen by Dr Matthew Maddocks
Pavasini R, Guralnik J, Brown JC, et al. Short Physical Performance Battery and all-cause mortality: systematic review and meta-analysis. BMC Medicine. 2016;14:215. doi:10.1186/s12916-016-0763-7.
This large meta-analysis over data from over 16,500 people demonstrates that poor physical performance is associated with an increased risk of all-cause mortality in a dose-response manner. The objective measure of functional limitation offered by the Short Physical Performance Battery (that includes walking, sit to stand, and balance tests) captures the multisystemic effects of aging, disease and cognition on overall health status. This work supports the role of simple physical tests as markers for risk stratification.
Chosen by Dr Jonathan Koffman
Connor, Stephen R. et al. Estimating the Global Need for Palliative Care for Children: A Cross-sectional Analysis Journal of Pain and Symptom Management, Volume 53 , Issue 2 , 171 – 177. doi.org/10.1016/j.jpainsymman.2016.08.020
The need for children's palliative care (CPC) globally is relatively unknown. Connor and colleagues attempt to examine the scope of need by creating an accurate global estimate of need for CPC based on a representative sample of countries from all regions of the world, and all World Bank income groups. The study makes use of data from the Institute for Health Metrics and Evaluation, mortality data from the World Health Organization for the specific diseases known to require CPC, among other sources The findings identify estimated need for CPC ranged from almost 120 per 10,000 children in Zimbabwe to slightly more than 20 per 10,000 in the UK. Overall, among the over 21 million children worldwide with conditions that might benefit annually from a palliative care approach, more than 8 million require specialized palliative care.. The authors argue the estimation of need for palliative care is a critical step in meeting the needs of children with life-threatening conditions. Moreover it provides a sound platform to advocate narrow unacceptably wide gap in provision.
Chosen by Jo Bayly
Runacres F, Gregory H, Ugalde A. 2016. ‘The horse has bolted I suspect’: A qualitative study of clinician’ attitudes and perceptions regarding palliative rehabilitation. Palliative Medicine 1-9. DOI:10.1177/0269216316670288. [epub ahead of print]
The authors used semi-structured interviews and thematic analysis to explore the attitudes and perceptions of palliative medicine physicians working in in-patient palliative care settings towards rehabilitation services delivered in the in-patient palliative care setting. Thematic analysis of interviews recorded with twenty physicians across rural and city palliative care in-patient units in Australia identified that the majority of participants interviewed viewed rehabilitation as being as important aspect of palliative care. However few reported that adequate rehabilitation services were available. Physicians with access to and experience of palliative rehabilitation services were more likely to report that most of their patients had palliative rehabilitation needs. Those without access described that only a few of their patients would need rehabilitation.
Participants demonstrated varied understanding regarding what palliative rehabilitation actually entails. The authors also encountered concerns regarding the term ‘rehabilitation’ in the palliative care setting, some felt it was a positive term, fostering hope and aiding transitions as people’s health status changed. Others felt the term to be ‘misleading’, with a potential to create unrealistic expectations.
The authors conclude that palliative rehabilitation services need to balance between improving and maintaining patients’ function while at the same time managing symptoms and supporting patients to optimise their quality of life.
Resource and skill set limitations were reported to act as barriers to the provision of rehabilitation services. The authors recommend that future research should lead to agreed definitions, frameworks of care and evidence based clinical guidelines to enable rehabilitation services to be resourced and available to patients who may gain benefit.
This paper was chosen as the external paper of the month to highlight the semantic issues with the term palliative rehabilitation. These mirror the semantic variations encountered in definitions of palliative care and end of life care, which impact on how services are configured and perceived.
Chosen by Dr Wei Gao
Wilson DG, Harris SK, Peck H, Hart K, Jung E, Azarbal AF, Mitchell EL, Landry GJ, Moneta GL. Patterns of Care in Hospitalized Vascular Surgery Patients at End of Life. JAMA Surg. 2016 Nov 2. doi: 10.1001/jamasurg.2016.3970. [Epub ahead of print]
A study published this month in JAMA Surgery found that most vascular surgery patients who died during hospitalisation are placed on comfort measures, but few had advance directives or a palliative care consultation. The findings suggest that preoperative advance care planning may improve care in older, sicker patients at the end of life.
Chosen by Dr Fliss Murtagh
Wallington M, Saxon EB, Bomb M, et al. 30-day mortality after systemic anticancer treatment for breast and lung cancer in England: a population-based, observational study. Lancet Oncol 2016; 17: 1203–16
Chosen by Lisa Brighton
Pino, M., Parry, R., Land, V., Faull, C., Feathers, L., & Seymour, J. (2016). Engaging Terminally Ill Patients in End of Life Talk: How Experienced Palliative Medicine Doctors Navigate the Dilemma of Promoting Discussions about Dying. PLoS One, 11(5), e0156174. doi: 10.1371/journal.pone.0156174
Communication about end of life (EoL) care is challenging for many professionals. The authors aimed to examine how experienced hospice doctors conduct conversations about EoL.
They used conversation analysis of recorded consultations between hospice doctors, patients with terminal disease, and relatives. Participants provided both prospective assent and retrospective consent for the recordings.
The most frequent method of promoting EoL talk was ‘elaboration solicitation’, in three forms: (1) fishing questions: asking for elaboration on specific concerns that may lead to EoL talk, (2) “You said…” phrases: paraphrasing something the patient/relative said to explore towards potential EoL talk, and (3) overt suggestions possible EoL thoughts. The latter was typically used when the first two methods did not result in EoL talk.
This study provides useful evidence of how EoL talk can be elicited by clinicians. Future research exploring EoL conversations in acute hospitals or primary care settings is suggested by the authors.
Chosen by Dr. Catherine Evans
Davies, N, Mathew R, Wilcock J, Manthorpe J, Sampson EL, Lamahewa, K and Iliffe S. (2016). A co-design process developing heuristics for practitioners providing end of life care for people with dementia. BMC Palliative Care 2016 Aug 2;15:68. doi: 10.1186/s12904-016-0146-z.
Clinical decision making for people with dementia at the end of life (EoL) is complex. The authors aimed to develop a toolkit of heuristics (meaning ‘rules-of- thumb’) to support practitioners’ decision making. The study used qualitative methods comprising narrative literature review and individual interviews/ focus groups with families, and health and care practitioners. The intention was to synthesise experience alongside evidence to form the heuristics. The co-design group reviewed iterative prototypes of the heuristic designs using a nominal group process. The final prototypes are presented in five clinical sites (e.g. GP practice).
The study identified four areas anddeveloped heuristics to support difficult decision making. Each heuristic comprised a set of rules and a decision tree, e.g. Withdrawing treatment supports practitioners through a process of considering benefits of treatment versus quality of life. The authors conclude heuristics offers an easy to use approach to support clinical decision making on key areas for patients with dementia at the EoL. The next steps are reporting on use in the clinical sites.
Chosen by Dr. Katherine Bristowe:
Rueda S, Mitra S, Chen S, Gogolidhvili D, Globerman J, Chambers L, Wilson M, Logie CH, Shi Q, Morassaei S and Rourke S (2016). Examining the associations between HIV-related stigma and health outcomes in people living with HIV/AIDS: a series of meta-analyses. BMJ Open. doi:10.1136/bmjopen-2016-011453
One of the biggest challenges facing people living with HIV today is stigma and discrimination. The authors sought conduct a systematic review and series of meta-analyses on the association between HIV-related stigma and health among people living with HIV.
64 studies were included in the meta-analyses. The authors found significant associations between HIV-related stigma and higher rates of depression, lower social support, lower levels of adherence to antiretroviral medications and access to and usage of health and social services.
HIV-related stigma has a detrimental impact on a variety of health-related outcomes in people with HIV. The authors recommend that future research should focus on understanding the mechanism of action behind the negative relationship between stigma and health, to better inform interventions to reduce the impact of stigma on the health and well-being of people living with HIV.
Chosen by Clare Pearson:
Seow Hsien, Sutradhar Rinku, McGrail Kim, Fassbender Konrad, Pataky Reka, Lawson Beverley, Sussman Jonathan, Burge Fred, and Barbera Lisa. End-of-Life Cancer Care: Temporal Association between Homecare Nursing and Hospitalizations. Journal of Palliative Medicine. February 2016, 19(3): 263-270. doi:10.1089/jpm.2015.0229.
Homecare nursing by generalists and reduced end-of-life hospitalizations was examined using linked administrative datasets in three Canadian provinces (with different homecare systems). In 84,000 decedents, adjusted results showed protective effect of nursing with end of life intent on hospitalization across last six months and of standard nursing in last month.
Chosen by Dr. Jen-Kuei Peng
Beck KR, Pantilat SZ, O'Riordan DL, Peters MG. Use of Palliative Care Consultation for Patients with End-Stage Liver Disease: Survey of Liver Transplant Service Providers. J Palliat Med. 2016 Apr 19. [Epub ahead of print] PubMed PMID: 27092870.
This study evaluated the attitudes of liver transplant (LT) providers and perceived barriers to palliative care services (PCS) for patients with end-stage liver disease (ESLD). Nearly all providers agreed that PCS benefits patients and reported that LT and PCS are not mutually exclusive. However, there were two main barriers to PCS, including confusion over referral criteria and describing PCS as end-of-life care by attending physicians. Besides, many providers felt that patients’ depression was poorly managed. Knowing these findings are important for integrating PCS into the care for patients with ESLD.
Chosen by Dr. Steve Ashford
Effect of a Task-Oriented Rehabilitation Program on Upper Extremity Recovery Following Motor Stroke. The ICARE Randomized Clinical Trial.
Carolee J. Winstein, PhD; Steven L.Wolf, PhD; AlexanderW. Dromerick, MD; Christianne J. Lane, PhD; Monica A. Nelsen, DPT; Rebecca Lewthwaite, PhD; Steven Yong Cen, PhD; Stanley P. Azen, PhD; for the Interdisciplinary Comprehensive Arm Rehabilitation Evaluation (ICARE) Investigative Team
JAMA. 2016;315(6):571-581. doi:10.1001/jama.2016.0276
The aim of the ICARE study was to compare the efficacy of a structured, task-oriented motor training program vs usual and customary occupational therapy (UCC) during stroke rehabilitation. A pragmatic, single-blind randomized trial was conducted.
No group differences were found between task-oriented training, does equivalent occupational therapy or usual care. The results suggest that usual and customary community-based therapy, provided during the typical outpatient rehabilitation time window by licensed therapists, improves upper extremity motor function and that more than doubling the dose of therapy does not lead to meaningful differences in motor outcomes.
Chosen by Dr. Nilay Hepgul
Chochinov HM, Johnston W, McClement SE, Hack TF, Dufault B, Enns M, Thompson G, Harlos M, Damant RW, Ramsey CD, Davison S, Zacharias J, Milke D, Strang D, Campbell-Enns HJ, Kredentser MS. (2016). Dignity and Distress towards the End of Life across Four Non-Cancer Populations. PLoS ONE 11(1):e0147607. doi:10.1371/journal.pone.0147607
This study compares dignity related distress in four non-cancer populations (ALS, ESRD, COPD and the frail elderly). Moderate/severe loss of dignity was reported across groups with no significant difference. However, each group had a different pattern of physical, psychological and existential distress. Knowing these intricacies of distress are important for understanding the end-of-life experiences and palliative care needs of non-cancer populations.
chosen by Melinda Smith
Krug, K., Miksch, A., Peters-Kimm, F., Engeser, P., & Szecsenyi, J. (2016).
Correlation between patient quality of life in palliative care and burden of their family caregivers: a prospective observational cohort study, BMC Palliative Care, 15(1):4 doi: 10.1186/s12904-016-0082-y.
This paper recognises the crucial role that caregivers have in supporting patients at the end of life in their wish to be cared for at home, and how caregiver burden may mean that palliative care at home is only possible to a limited extent. I thought this paper may raise particular issues in regards to how caregiver burden may influence a home death happening or not.
Caregiver burden increased with deteriorating emotional functioning (between time 3 and time 2) and with increasing breathlessness of the patients (between time 2 and time 1). Regular monitoring of patient breathlessness and emotional functioning, and interventions to support both patients and caregivers when there is a change in these symptoms, is recommended to effectively reduce caregiver burden.
chosen by Dr Roxana Vanderstay
C Chruzander, S Johansson, K Gottberg, U Einarsson, J HillertLotta, W Holmqvist and C Ytterberg. A 10-year population-based study of people with multiple sclerosis in Stockholm, Sweden: use of and satisfaction with care and the value of different factors in predicting use of care. BMC Health Services Research (2015) 15:480 DOI 10.1186/s12913-015-1144-1
This study explored the use of care, the predictive value of personal factors, disease-specific factors and functioning on the use of care for people with multiple sclerosis, and the patient satisfaction with care in a 10-year perspective in Stockholm, Sweden. Primary care accounted for the majority of all care and Neurology and Rehabilitation Departments together accounted for two-thirds of all hospital outpatient care. Lower coping capacity, impaired manual dexterity and activity of daily living dependency at baseline, together with progress in MS disability predicted a higher use of care. Overall, patient satisfaction with care was stable over time, however, there are challenges to care coordination. Implementation of person-centred care could be a strategy to increase efficacy/outcome of care.
chosen by Dr Matthew Maddocks
Johnson MJ, Kanaan M, Richardson G, Nabb S, Torgerson D, English A, Barton R, Booth S. A randomised controlled trial of three or one breathing technique training sessions for breathlessness in people with malignant lung disease. BMC Medicine 2015, 13:213
Johnson et al. report findings from a randomised controlled trial testing the superiority of three versus one sessions of breathing training, to reduce breathlessness intensity in patients with thoracic cancer. The trial identified no additional benefit from three sessions and the authors concluded that one session of breathing training represents a more cost-effective means to deliver this intervention. The findings are likely to be useful to a wide multidisciplinary audience who use breathing training as part of their practice. Strengths of the trial are its external validity; participants were recruited from multiple settings, and the novel concept of an optimal dose of supportive care, which considers the potential adverse effects of excess treatment burden.
chosen by Dr Jonathan Koffman
Wei-I Tsai, Holly G Prigerson, Chung-Yi Li, Wen-Chi Chou, Su-Ching Kuo, and Siew Tzuh Tang Longitudinal changes and predictors of prolonged grief for bereaved family caregivers over the first 2 years after the terminally ill cancer patient’s death Palliat Med. 2015 Aug 26. pii: 0269216315603261. [Epub ahead of print]
A significant minority of bereaved caregivers experience prolonged grief. However, few longitudinal studies have examined prolonged grief, especially in Asia. In this paper, Wei-I Tsai and colleagues conducted a prospective longitudinal study to identify instances of prolonged grief among caregivers who had lost a loved one or close relative. A total 493 caregivers were recruited from a medical center in Taiwan. They observed the prevalence of prolonged grief decreased significantly over time. Caregivers’ likelihood of prolonged grief was higher if they had severe pre-loss depressive symptoms, negatively perceived their relative’s dying situation, and were poorly prepared for the patient’s death. The authors suggest prolonged grief diminished over time and was predicted by modifiable factors before, during, and after bereavement. They recommend healthcare professionals develop and provide at-risk caregivers with effective interventions to alleviate preloss depressive symptoms, and recuce instance of prolonged grief.
chosen by Sophie Pask
Jarrett, N., Porter, K., Lathlean, J. Duke, S., Corner, J. and Addlington-Hall, J. Palliative care patients’ perceptions of the work involved in understanding and managing the network of care provision surrounding them. BMJ Supportive and Palliative Care. March 2015. doi:10.1136/bmjspcare-2014-000781.
This study explored how cancer palliative care patients manage the large network of care provision surrounding them. They found one main theme (patient work – their strategies and project management), which included 7 subthemes. The findings can be used to refine clinical practice in relation to communication challenges patients and families face.
chosen by Joanna Davies
Ahmadi Z, Lundstrom S, Janson C, Strang P, Emtner M, Currow DC, Ekstrom M. End-of-life care in oxygen-dependent COPD and cancer: a national populationbased study. European Respiratory Journal. August 2015. [Epub ahead of print]. doi:10.1183/09031936.00035915
This study uses linked Swedish population-based datasets to expand our knowledge of the comparative symptom burden, and relief of symptoms, in cancer patients and COPD patients. The study found that prescription of ‘as-needed’ medications was significantly lower for COPD patients than for cancer patients across a range of symptoms.
chosen by Marsha Dawkins
Dr Thomas W LeBlanc, Michael J McNeil, Arif H Kamal, Prof David C Currow, Prof Amy P Abernethy. Polypharmacy in patients with advanced cancer and the role of medication discontinuation. The Lancet Oncology July 2015, 16(7), e333-e341.
Polypharmacy is prevalent in the advanced cancer population. Few data for specific interventions in the advanced cancer population are available. Clinicians need to be aware of this and at least informally screen for polypharmacy, particularly in elderly frail patients who might be at high risk of developing adverse drug events.
chosen by Ping Guo
Vedel, I., Ghadi, V., Lapointe, L., Routelous, C., Aegerter, P., & Guirimand, F. (2014). Patients’, family caregivers’, and professionals’ perspectives on quality of palliative care: A qualitative study. Palliative medicine, 28(9), 1128-1138.
This qualitative study (Vedel et al., 2014) identified four major dimensions of quality of care which are deemed critical by 61 different patients, families, health professionals across six settings in Paris. The findings can be used to refine or develop quality indicators that truly mirror the points of different stakeholders.
chosen by Mendwas Dzingina
Burns EJ, Quinn SJ, Abernethy AP, Currow DC. Caregiver Expectations: Predictors of a Worse than Expected Caregiving Experience at the End of Life. Journal of pain and symptom management. 2015. Epub 2015/05/26.
This was a cross sectional study conducted in South Australia which aimed to identify and characterize for the first time those people who reported a “worse” or “much worse” than expected caregiving experience while caring for someone at the end of life. The study found that 48.3% of the 1,628 caregivers reported a worse or much worse than expected caregiving experience and this was significantly associated with gender and with level of care provided.
chosen by Lesley Henson
Kistler EA, Sean Morrison R, Richardson LD, Ortiz JM, Grudzen CR. Emergency department-triggered palliative care in advanced cancer: proof of concept. Academic emergency medicine : official journal of the Society for Academic Emergency Medicine. 2015;22(2):237-9. doi: 10.1111/acem.12573
Kristler and colleagues (2015) conducted a single-blinded pilot randomised controlled trial to evaluate the effect of emergency department initiated palliative care referral on the proportion and timing of palliative care consultations. Patients with advanced cancer who were admitted to hospital following presentation to the emergency department were randomly assigned to either standard care or the study intervention group which involved the palliative care team being informed of the patients presentation whilst they were still in the emergency department. They found that 88% of patients in the intervention group had documented palliative care consultations during their hospital admission compared to just 18% in the control group (p<0.01) highlighting the very low rate of physician-driven palliative care consultation seen with usual care. Further research aimed at generalising emergency department interventions to trigger palliative care referrals is needed.
chosen by Alice Brown
Heyland DK, Dodek P, Mehta S, Cook D,Garland A, Stelfox HT, Bagshaw SM, Kutsogiannis DJ, Burns K, Muscedere J, Turgeon AF, Fowler R, Jiang X and Day AG. Admission of the very elderly to the intensive care unit: Family members’perspectives on clinical decision-making from a multicenter cohort study. Palliative Medicine 2015, Vol. 29(4) 324–335.
Heyland et al (2015) conducted a multicentre, prospective, cohort study describing family member’s perspectives about care provided to the very elderly critically ill patients in the ICU. The study of 535 family members reported that the ‘patient be comfortable and suffer as little as possible’ was their most important value and ‘the belief that life should be preserved at all costs’ was their least important value. (57.9%) preferred that life support be used for their family member, whereas 24.1% preferred comfort measures only, and 14.4% were unsure of their treatment preferences. These findings suggested a difference between family values and preferences for end-of-life care and the actual care received. Deficiencies in communication and decision-making were highlighted and may be associated with prolonged use of life-sustaining treatments in very elderly critically ill patients.
chosen by Liesbeth van Vliet
Managing Advanced Progressive Supranuclear Palsy and Corticobasal Degeneration in a Palliative Care Unit: Admission Triggers and Outcomes.
Am J Hosp Palliat Care. 2014 Dec 30. pii: 1049909114565110. [Epub ahead of print].
Bukki et al (2014) studied triggers for and outcomes of palliative care involvement for patients with Progressive Supranuclear Palsy and Corticobasal Degeneration in a German setting. A retrospective chart review of patients admitted to a Palliative Care Unit (which was run by an integrated palliative care/neurology team) between 2006-2012 was conducted. For the 38 included patients, swallowing (59%), gait instability (52%) and pain/spasticity (46%) were the most common problems at admission, pain (52%) was best improved and swallowing (11%) least at discharge. Overall, most patients did stabilize or improve (68%). Despite most people being discharged home, only half received continued professional support (despite high symptom load). These findings show the potential role palliative care interventions might play for this patient group.
We are currently running a phase 3 RCT study (OPTCARE Neuro) in which we test a short-term integrated palliative care intervention for people suffering from long-term neurological conditions such as PSP. This study highlights the potential of this intervention in this patient group. Moreover, it provides some background information regarding symptoms that might be prevalent in this patient group and which palliative care might be able to influence to different degrees. Our webpages for OPTCARE Neuro will be available shortly.
chosen by Deokhee Yi
Schaller, S., et al., The main cost drivers in dementia: a systematic review. Int J Geriatr Psychiatry, 2014.
An international systematic literature review of cost of illness studies on dementia focusing on community versus institutional costs found that main cost drivers of dementia are informal costs due to home based long term care and nursing home expenditures rather than direct medical costs (inpatient and outpatient services, medication).
Chari, A.V., et al., The Opportunity Costs of Informal Elder-Care in the United States: New Estimates from the American Time Use Survey. Health Services Research, 2014: p. n/a-n/a. (Article first published online: 7 OCT 2014)
A study using data from the 2011 and 2012 American Time Use Survey found that total opportunity costs of informal elder-care amount to $522 billion annually, while the costs of replacing this care by unskilled and skilled paid care are $221 billion and $642 billion, respectively.
chosen by Lucy Selman
Steinhauser KE, Voils CI, Bosworth HB, Tulsky JA. Validation of a Measure of Family Experience of Patients with Serious Illness: The QUAL-E (Fam). J Pain Symptom Manage. 2014 Dec;48(6): 1168-81.
Although the family is part of the core unit in care in palliative care, there are currently relatively few measures to assess outcomes in family members and informal caregivers. This paper presents the validation of the QUAL-E (Fam), a measure of the experience of families of patients with serious illness, led by Karen Steinhauser and colleagues from Duke University and Durham Veterans Administration Medical Center.
Cognitive interviews with 32 family members of terminally ill patients were conducted to refine the instrument followed by factor analysis and testing of test-retest reliability and convergent and divergent validity in two samples (n=141, n=244). The resultant 17-item measure has four subscales assessing symptom impact, relationship with healthcare providers, completion within patient-family relationships, and preparation. Findings suggest the QUAL-E (Fam) provides a valuable measure of family experience for assessing and improving the quality of palliative care.
chosen by Lesley Henson
Reyniers T, Houttekier D, Cohen J, et al. What justifies a hospital admission at the end of life? A focus group study on perspectives of family physicians and nurses. Palliat Med. [Epub ahead of print]
This paper explores healthcare professionals’ perspectives on “what justifies a hospital admission at the end of life”. The study involved eight focus groups with nurses and family physicians, with the findings analysed using a constant comparative approach. The paper reports that patient preference, certain medical situations and an inadequate caring capacity at a patient’s current setting were all reasons “justifiable” of an acute hospitalisation towards the end of life.
chosen by Jana Witt
Currow DC, Allingham S, Yates P, Johnson C, Clark K, Eagar K (2014) Improving national hospice/palliative care service symptom outcomes systematically through point-of-care data collection, structured feedback and benchmarking. Support Care Cancer. [Epub ahead of print]
This is the first paper to report on the overall impact of routine use of outcome measures and systematic feedback in palliative care. It presents data collected by the Australian Palliative Care Outcomes Collaboration (PCOC) as part of a national programme.
Results show that over three years, there were statistically significant improvements in all outcome domains as reported by patients and clinicians, with the exception of pain. Additionally the data suggest that, not only was the overall performance of services improving, but outcomes were being achieved more consistently. Link: http://link.springer.com/article/10.1007%2Fs00520-014-2351-8
chosen by Stephen Ashford
Eng JJ, Reime B. (2014) Exercise for depressive symptoms in stroke patients: a systematic review and meta-analysis. Clinical Rehabilitation 28(8): 731-739
This paper presents a systematic review and meta-analysis of randomised controlled trials examining the effect of physical exercise for depressive symptoms in stroke patients. Work has been undertaken in this area in a number of conditions and progressing this in the stroke population is particularly clinically relevant. Prevalence of depression in stroke survivors has been documented at between 29 and 36%. Physical exercise forms a significant part of rehabilitation programmes for many stroke patients and this issue is therefore particularly relevant for rehabilitation professionals and patients to consider.
chosen by Katherine Bristowe
Houben CHM, Spruit MA, Groenen MTJ, Wouters EFM & Janssen DJA. (2014). Efficacy of advance care planning: a systematic review and meta-analysis. JAMDA; 15 (7): 477-489.
This paper is a systematic review and meta analysis of the efficacy of advance care planning interventions in adult populations. The authors identified 56 randomised controlled trials of interventions that focused on completion of advance directives, and interventions that also included communication about end of life care, published between 1992 and 2012. They found that both interventions focusing on advance directives, and those that also included communication about end of life care, increased completion of advanced directives and occurrence of end of life discussions, which was their primary outcome. Importantly, interventions that included communication about end of life issues in addition to completion of advance directives also improved concordance between patients’ preferences for end of life care, and received end of life care. However, the impact on satisfaction with healthcare and use of healthcare services remains unknown.
chosen by Stephen Kriese
Poonja Z, Brisebois A, van Zanten SV, Tandon P, Meeberg G, Karvellas CJ. (2014). Patients with cirrhosis and denied liver transplants rarely receive adequate palliative care or appropriate management. Clinical Gastroenterology and Hepatology, 12(4), 692–698. DOI: http://dx.doi.org/10.1016/j.cgh.2013.08.027
This is a historical cohort study of 102 patients with end-stage liver disease who were declined listing or removed from the waiting list of a liver transplantation programme in a single Canadian centre between 2005 and 2010. These patients, all of whom are nearing the end-of-life, had a high prevalence of subsequent ICU admissions (48%), 64% died in hospital and pain and other symptoms were commonly recorded in medical notes. Strikingly, only 11% of patients were in receipt of specialist palliative care. This study provides further support for the importance of detailed prospective study of the experiences of people with liver disease nearing the end-of-life and of their families.
chosen by Keira Lowther
Bergstraesser E, Paul M, Rufibach K, Hain R, Held L. The Paediatric Palliative Screening Scale: Further validity testing. Palliative Medicine. May 2014. 28(6) pp530-533)
This paper reports on further validation for a paediatric screening tool for palliative care. Paediatric palliative care experts were recruited to assess case vignettes, composed of categories from the Paediatric Palliative Screening Scale, for eligibility for palliative care. Estimated life expectancy and child/parent preferences were the strongest predictors. This instrument may simplify the identification of children who may benefit from palliative care.
chosen by Katherine Sleeman
Clark D, Armstrong M, Allan A, Graham F, Carnon A, Isles C. Imminence of death among hospital inpatients: Prevalent cohort study. Palliative Medicine 17 March, 2014.
This paper, published by David Clark at the University of Glasgow, very simply highlights why end of life care should be core business for people who work in hospitals. The study used routinely collected data to determine the likelihood of hospital inpatients dying within a year. The authors showed that almost a third of hospital inpatients studied were in the last year of their lives, and amongst people over 85 years, almost half were in their last year. Prof Clark has written a blog about the study here.
The online version of this article can be found at: http://pmj.sagepub.com/content/early/2014/03/17/0269216314526443
chosen by Barb Daveson
Lo C, Hales S, Jung J, Chiu A, Panday T, Rydall A, Nissim R, Malfitano C, Petricone-Westwood D, Zimmermann C, Rodin G. Managing Cancer And Living Meaningfully (CALM): Phase 2 trial of a brief individual psychotherapy for patients with advanced cancer. Palliat Med March 2014 28: 234-242, first published on October 29, 2013. doi:10.1177/0269216313507757 http://pmj.sagepub.com/content/28/3/234.full.pdf+html
Adequately supporting psychosocial and psychosocial needs of those with advanced cancer is a challenge in palliative care. A new brief individual psychotherapy for patients with advanced cancer is examined in this article through a phase 2 intervention-only design. The primary outcome examined was depressive symptoms. Secondary outcomes were death anxiety, attachment security, spiritual well-being and psychological growth. Multilevel regression was used. Findings from the study indicate that the intervention may be a feasible intervention of benefit and a phase III study is warranted. This work begins to address a gap in the evidence as individual interventions targeting physical and psychosocial challenges is currently lacking. Pilot studies regarding this intervention are now underway in Canada, Germany and Italy.
chosen by Clare Ellis-Smith
Zimmermann, C., Swami, N., Krzyzanowska, M., Hannon, B., Leighl, N., Oza, A., Moore, M., Rydall, A., Rodin, G., Tannock, I., Donner, A. and Lo, C. Early palliative care for patients with advanced cancer: a cluster-randomised controlled trial. The Lancet, Published online 19 February 2014. doi http://dx.doi.org/10.1016/S0140-6736(13)62416-2
This article reports on a cluster-randomised trial of an early palliative care intervention compared to standard care for patients with advanced cancer. The intervention consists of a comprehensive multidisciplinary palliative care assessment and follow-up. There was a non-significant change in the primary outcome of quality of life at 3 months measured by the Functional Assessment of Chronic Illness Therapy – Spiritual Wellbeing (FACIT-Sp). Secondary outcome measures including change in a second quality of life measure and satisfaction with care were significant at 3 months. At four months, changes in both quality of life measures, satisfaction with care, and symptom severity were significant in favour of the intervention. This study suggests that an early comprehensive palliative care service intervention can improve outcomes for patients with cancer.
chosen by Iris Groeneveld
Gardiner C, Brereton L, Frey R, Wilkinson-Meyers L, Gott M. Exploring the financial impact of caring for family members receiving palliative and end-of-life care: A systematic review of the literature. Palliative Medicine. 2013 Nov (Online first: http://pmj.sagepub.com/content/early/2013/11/05/0269216313510588)
Gardiner et al. have conducted a systematic review of the literature on the financial impact of caring for family members receiving palliative and end of life care. They identified 21 articles from 17 studies reporting significant direct and indirect financial costs of caregiving, multidimensional caregiver burden (such as delaying studies or medical treatment), and various factors to mediate the extent of financial burden (ethic minority groups and lower socio-economic groups were at a disadvantage). The review highlights a gap in the evidence base regarding the financial implications of providing care for a family member, particularly in light of policy developments to move provision of palliative and end of life care to community settings.