Sage Palliative Medicine & Chronic Care

This episode features Merryn Gott (School of Nursing, The University of Auckland, Auckland, New Zealand). The aim of this study was to explore the role of community at end of life for people dying in advanced age from the perspective of their bereaved family caregivers. The study used a constructionist framework underpinned a qualitative research design. Data were analysed using critical thematic analysis. A reduction in the social networks and community engagement of the older person was identified in the end-of-life period. Numerous barriers to community engagement in advanced age were identified. This study provides strong support for public health approaches to palliative care that advocate building social networks around people who are dying and their family carers. However, it also indicates that strategies to do so must be flexible enough to be responsive to the unique end-of-life circumstances of people in advanced age. Full paper available from: http://journals.sagepub.com/doi/abs/10.1177/0269216317

This episode features Professor Miriam Johnson (Director, Wolfson Palliative Care Research Centre, Hull York Medical School). The aim of this study was to: establish cardiology led palliative care versus usual care was feasible, to assess quality of data capture, to facilitate future sample size calculation and to assess survival.  Study design was a feasibility, non-randomised trial, which recruited unmatched symptomatic heart failure patients who were receiving maximal therapy for their disease. The study recruited 77 participants (43 in palliative cardiology and 34 usual care). The study concluded that a future trial is feasible. No difference in survival was noted between the intervention and control groups. This study concludes that cardiology led palliative care may improve care delivery, but further research is required to test this hypothesis further. Full paper available from:https://doi.org/10.1177/0269216318763225

This episode features Rachel Depner (Palliative Care Institute, The Center for Hospice & Palliative Care, New York, USA). She reports on her study which aimed to (a) describe a prison-based end-of-life program utilizing inmate peer caregivers, (b) identify inmate-caregiver motivations for participation, and (c) analyze the role of building trust and meaningful relationships within the correctional end-of-life care setting. A total of 22 semi-structured interviews were conducted with inmate-caregivers. Data were analyzed using Consensual Qualitative Research methodology. The study finds that, in total, five over-arching and distinct domains emerged; this manuscript focuses on the following three: (a) program description, (b) motivation, and (c) connections with others. The findings suggest that inmate-caregivers believe they provide a unique and necessary adaptation to prison-based end-of-life care resulting in multilevel benefits. These additional perceived benefits go beyond a marginalized group gaining

This episode features Professor Gunn Grande (University of Manchester, Manchester, UK). The aim of this qualitative study was to explore whether and how family carers are currently supported during patient discharge at end of life; to assess perceived benefits, acceptability and feasibility of using The Carer Support Needs Assessment Tool (CSNAT) Approach in the hospital setting to support carers. The study identified current barriers to supporting carers at hospital discharge, which were an organisational focus on patients’ needs, what practitioners perceived as carers’ often ‘unrealistic expectations’ of end-of-life caregiving at home and lack of awareness of patients’ end-of-life situation. The CSNAT Approach was viewed as enabling carer support and addressing difficulties of discussing the realities of supporting someone at home towards end of life. Implementation in hospital required organisational considerations of practitioner workload and training. To enhance carer support, a two-stage process of asse

This episode features Dr. Mariona Guerrero (Universitat Internacional de Catalunya, Barcelona, Spain). She reports on her systematic review which aimed to identify meaning in life interventions implemented in patients with advanced disease and to describe their context, mechanisms and outcomes. The study was a Systematic review of four electronic databases, and involved a realist synthesis of meaning in life interventions using criteria from the Realist And Meta-narrative Evidence Syntheses: Evolving Standards project. A total of 12 articles were included in the systematic review, corresponding to nine different interventions. Analysis of context, mechanisms and outcomes configurations showed that a core component of all the interventions was the interpersonal encounter between patient and therapist, in which sources of meaning were explored and a sense of connectedness was re-established. Meaning in life interventions were associated with clinical benefits on measures of purpose-in-life, quality of life, s

This episode features Anna Bone (Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King’s College London). This study aimed to project where people will die from 2015 to 2040 across all care settings in England and Wales. The study was a population-based trend analysis and projections using simple linear modelling. All deaths (2004–2014) from death registration data and predicted deaths (2015–2040) from official population forecasts in England and Wales. Age- and gender-specific proportions of deaths in hospital, care home, home, hospice and ‘other’ were applied to numbers of expected future deaths.  The study demonstrated that if current trends continue, the number of deaths in care homes and homes will increase by 108.1% and 88.6%, with care home the most common place of death by 2040. If care home capacity does not expand and additional deaths occur in hospital, hospital deaths will start rising by 2023. Due to increasing demand, in order to sustain current trends, end-of-life care

This episode features Briony Hudson (Louis Dundas Centre for Children’s Palliative Care, UCL Institute of Child Health, London, UK  and Marie Curie Palliative Care Research Department, UCL Division of Psychiatry, London, UK) and Linda Oostendorp, (Marie Curie Palliative Care Research Department, UCL Division of Psychiatry, London, UK). They describe their study which aimed to explore how children and young people (aged 0–25 years) with life-limiting conditions or life-threatening illnesses and their families were identified, invited and consented to research published in the last 5 years. The study was a systematic of (quantitative, qualitative and mixed methods) research published between 2009 and 2014, recruiting children and young people with life-limiting conditions or life-threatening illness and their families. A total of 215 studies – 152 qualitative, 54 quantitative and 9 mixed methods – were included. The study demonstrated that all stages of recruitment in children were under reported. Most studies

This episode features Wendy Duggleby (University of Alberta, Edmonton,  Canada) who describes a study which aimed to (a) explore the transition experience of family caregivers caring for persons with advanced cancer living in the community, (b) describe potential triggers for transitions, (c) identify what influences this experience, and (d) develop a conceptual framework of their transition experience. The study was a meta-synthesis review of qualitative (and mixed-method) research, which described caregiving experiences of family caregivers for community-living persons with advanced cancer at the end of life. Seventy-two studies were included. The study reports how family caregivers experience a “life transition” whereby their lives are permanently altered. The participants described the process of redefining normal which consisted of coming to terms with their situation and connecting with others. Outcomes of these processes were as follows: (a) maintaining a sense of personhood, (b) reframing hope, (c)

This episode features Claudia Virdun (Faculty of Health, University of Technology Sydney (UTS), Ultimo, NSW, Australia) who describes a study which aimed to gain a richer and deeper understanding of elements of end-of-life care that consumers consider most important within the hospital setting. The study was a meta-synthesis (review of all the qualitative research on a given subject) of consumer narratives reporting what they considered important elements of end of life care. Sixteen studies were included. Synthesis yielded 7 patient and 10 family themes including 6 common themes: (1) expert care, (2) effective communication and shared decision-making, (3) respectful and compassionate care, (4) adequate environment for care, (5) family involvement and (6) financial affairs. Maintenance of sense of self was the additional patient theme, while the four additional family themes were as follows: (1) maintenance of patient safety, (2) preparation for death, (3) care extending to the family after patient death and

This episode features Suresh Kumar Chhetri (Preston MND Care and Research Centre, Department of Neurology, Royal Preston Hospital, Lancashire Teaching Hospitals NHS Foundation Trust, Preston, UK) who describes a study which aimed to explore patients' experience of enteral feeding and its impact on quality of life. The study was a questionnaire based prospective analysis of 21 MND patients receiving enteral feeding followed at 3, 6 an 12 months post gastrostomy. The questionnaire was asked participants about their quality-of-life. The study focused on four main themes: (1) problems with enteral feeding (2) improved quality-of-life (3) no change in quality-of-life and (4) worse quality-of-life. The research found that most of the study participants acknowledged the importance of enteral feeding and had a positive attitude to this practice. However, the positive impact of enteral feeing may not be observable in the first few months post gastrostomy. Full paper available from: http://journals.sagepub.com/doi/ab

This episode features Professor Matthew Allsop (Leeds Institute of Health Sciences, University of Leeds, Leeds, UK) who describes a study that outlined and applied an evaluation framework to examine how and when electronic documentation of advance care planning is occurring in end of life care services. The study extracted data from electronic palliative care coordination systems for 82 of 108 general practices across a large UK city.  This study reports the first methodology for evaluating how and when electronic palliative care coordination systems documentation is occurring. It raises questions about what can be drawn from routine data collected through electronic palliative care coordination systems and outlines considerations for future evaluation.. Full paper available from: http://journals.sagepub.com/doi/full/10.1177/0269216316663881

This episode features Professor Liz Forbat (Australian Catholic University, Canberra, ACT, Australia) and Rachel Bilton-Simek (Calvary Public Hospital Bruce, Canberra, ACT, Australia). Together they describe a Single-arm mixed-method feasibility proof-of-concept trial which aimed to design and test an innovative distance-learning educational package (PrECEPt: PalliativE Caregivers Education Package). The study determined that distance learning is acceptable and feasible for both caregivers and healthcare professionals. Two modules were developed and tested (nutrition/hydration and pain management) with 18 caregivers. The materials did not have a statistically significant impact on carer self-efficacy. However, statistically significant improvements were observed on the two subsidiary measures of (1) caregiving tasks, consequences and needs (p = 0.03, confidence interval: 0.72, 9.4) and (2) caregiver preparedness (p = 0.001, confidence interval: −1.22, −0.46).  In conclusion the findings demonstrates educati

This episode features the work of Philippa Cahill et al (School of Medicine, The University of Notre Dame Australia, Sydney, NSW, Australia) who describes a systematic review that examines the evidence supporting family meetings as a strategy to address the needs of palliative patients and their families. The authors found that there was low-level evidence to support family meetings. Only two quantitative pre- and post-studies used a validated palliative care family outcome measure with both studies reporting significant results post-family meetings. Four other quantitative studies reported significant results using non-validated measures. In conclusion the findings demonstrates that there is a paucity of evidence to support family meetings in the inpatient palliative care setting. Further research using more robust designs, validated outcome measures, and an economic analysis are required to build the family meeting evidence before they are routinely adopted into clinical practice. Full paper available fro

This episode features the work of Professor David Currow et al (Flinders University, Adelaide, SA, Australia) who describes a study which aimed to compare characteristics, expressed unmet needs and outcomes for spousal caregivers, with other caregivers at the end of life, by gender and age. The study used data from The South Australian Health Omnibus (an annual, random, face-to-face, cross-sectional survey wherein respondents are asked about end-of-life care). The authors found that bereaved spousal caregivers were more likely to be older, female, better educated, have lower incomes, less full-time work, English as second language, sought help with grief and provided more day-to-day care for longer periods. Spousal caregivers were less likely to be willing to take on caregiving again, less able to ‘move on’ with life and needed greater emotional support and information about illness and services. In conclusion, spousal caregivers are different from other caregivers, with more intense needs that are not fully

This episode features the work of Dr Eliza M Park et al (Department of Psychiatry, The University of North Carolina at Chapel Hill, Chapel Hill, NC, USA) who describes a study which aimed to describe the experience of living with advanced cancer as a parent, including illness experience, parental concerns, and treatment decision making and to explore whether these experiences differ by their functional status. The study was a cross-sectional, qualitative study using in-depth, semi-structured interviews. Data were analyzed using thematic content analysis. The results demonstrated four themes regarding the experience of being a parent with advanced cancer: (1) parental concerns about the impact of their illness and death on their children, (2) “missing out” and losses of parental role and responsibilities, (3) maintaining parental responsibilities despite life-limiting illness, and (4) parental identity influencing decision making about treatment. Full paper available from: http://journals.sagepub.com/doi/abs/1

This episode features the work of Dr Hilde Buiting et al (Netherlands Cancer Institute, Amsterdam and Netherlands Comprehensive Cancer Organisation (IKNL), Utrecht) who conducted a medical record review of patients selected selected patients from the nationwide Netherlands Cancer Registry. The aim of the study was to explore the content of medical records of patients with advanced non-small cell lung cancer and pancreatic cancer with specific emphasis on doctors’ notes about decisions on palliative systemic treatment. Full paper from: http://journals.sagepub.com/doi/abs/10.1177/0269216316661685?journalCode=pmja

This episode features the work of Dr Peter Tanuseputro et al (Bruyère Research Institute and Ottawa Hospital Research Institute, Ottawa, ON, Canada) who conducted a retrospective population-level cohort study, describing palliative care in the last year of life using linked health administrative databases which the aim to provide a population perspective on end-of-life palliative care delivery across health sectors. Full paper from: http://journals.sagepub.com/doi/full/10.1177/0269216316653524

This episode features the work of Dr Alze Tavares et al (Hospital Paulistano, Sao Paulo, Brazil) who conducted a study which aimed to implement a patient-centred outcome measure in daily practice, in order to fulfil one quality indicator, which is to improve pain during the 72 hours after admission, in at least 75% of patients.. Full paper from: http://journals.sagepub.com/doi/full/10.1177/0269216316655349

In this episode Dr James Downar (University of Toronto, Canada) presents a study which aimed to determine whether standardized patient simulation offers benefit over didactic sessions alone for improving skill and comfort discussing goals of care of first-year internal medicine residents. Full paper from: http://journals.sagepub.com/doi/full/10.1177/0269216316652278

In this episode Professor Robin Cohen (Departments of Oncology and Medicine, McGill University, Montreal, QC, Canada) presents a study which aimed to revise the McGill Quality of Life Questionnaire (McGill Quality of Life Questionnaire–Revised) while maintaining or improving its psychometric properties and length, keeping it as close as possible to the McGill Quality of Life Questionnaire to enable reasonable comparison with existing McGill Quality of Life Questionnaire literature. A copy of the questionnaire can be requested by email (robin.cohen@mcgill.ca).  Full paper from: http://journals.sagepub.com/doi/full/10.1177/0269216316659603