Early palliative care for people with advanced illnesses: research into practice

Identifying people with advanced illnesses whose health is deteriorating, assessing their needs and planning care proactively with them are healthcare priorities given the demographic trend of ageing populations in the UK and internationally. Over the past 10 years (2004-2014), I have led a series of research studies that have made an important academic contribution to improving palliative care services for patients with heart disease and advanced multimorbidity. My first paper reported secondary analysis of data generated from a qualitative study of the illness and care experiences of patients with advanced heart failure. This work used innovative, qualitative research methods to explore and understand patient, carer and health professional perspectives over time. My second study then evaluated whether health and social care services were configured and delivered in response to the needs of people with heart failure and their families. This led me to recommend an anticipatory care framework which integrated a palliative care approach with other aspects of treatment and care. Around this time, advance care planning (planning ahead to facilitate end-of-life care aligned with people’s goals and preferences) was being strongly advocated by NHS health policy makers despite limited research in the UK. For my third study, I evaluated an evidence-based, educational intervention for general practitioners while also exploring barriers and facilitators to advance care planning in primary care for patients with cancer or other advanced conditions. It was becoming increasingly clear that failure to identify people with deteriorating health and a high risk of dying in a timely way was a major barrier to more effective palliative care. The problem was greatest for patients with non-malignant conditions whose illness trajectory is much less easy to predict than in cancer populations. I therefore started to research and develop a new clinical tool designed to prompt early, proactive patient identification in routine clinical practice – the Supportive and Palliative Care Indicators Tool (SPICT). My fourth research paper reported an evaluation of the SPICT in a mixed-methods study in a large tertiary care hospital. The SPICT was then used to identify people with multimorbidity for my fifth study, a longitudinal exploration of patient and carer experiences of hospital admission and ongoing community care. In my final paper, I drew on my previous research and combined this with well-developed approaches to timely identification and effective communication. I described the design of a successful pilot randomised trial of future care planning with people who had advanced heart disease and their carers. This thesis presents a critical review of these six research studies setting them in context and demonstrating the impact they have had in ensuring that high quality research evidence informs current and future developments in palliative care policy and clinical practice

Translation and Cross-Cultural Adaptation of the Supportive and Palliative Care Indicators Tool into Japanese:A Preliminary Report

BACKGROUND: There is a need for tools in primary care to support clinicians to identify patients with unmet palliative care needs. The Supportive and Palliative Care Indicators Tool (SPICT) is concise and covers most conditions in primary care settings. However, the SPICT was not available in Japanese. METHODS: The translation and cultural adaptation of the SPICT was conducted in four stages: forward translation (Stage I), synthesis (Stage II), back translation (Stage III), and expert committee review (Stage IV). RESULTS: During the translation process, any content challenging to translate was addressed in Stage II and through discussion among the researchers. The expert committee review provided valuable insights on palliative care in Japan in addition to the translation. CONCLUSION: The Japanese version of the SPICT and its user guide are ready to be tested in clinical settings. They have the potential to help Japanese family physicians integrate palliative care in their care of patients with all life-limiting illnesses

Archetypal trajectories of social, psychological, and spiritual wellbeing and distress in family care givers of patients with lung cancer: secondary analysis of serial qualitative interviews

Objective To assess if family care givers of patients with lung cancer experience the patterns of social, psychological, and spiritual wellbeing and distress typical of the patient, from diagnosis to death

Unscheduled and out-of-hours care for people in their last year of life:a retrospective cohort analysis of national datasets

Objectives To analyse patterns of use and costs of unscheduled National Health Service (NHS) services for people in the last year of life.Design Retrospective cohort analysis of national datasets with application of standard UK costings.Participants and setting All people who died in Scotland in 2016 aged 18 or older (N=56 407).Main outcome measures Frequency of use of the five unscheduled NHS services in the last 12 months of life by underlying cause of death, patient demographics, Continuous Unscheduled Pathways (CUPs) followed by patients during each care episode, total NHS and per-patient costs.Results 53 509 patients (94.9%) had at least one contact with an unscheduled care service during their last year of life (472 360 contacts), with 34.2% in the last month of life. By linking patient contacts during each episode of care, we identified 206 841 CUPs, with 133 980 (64.8%) starting out-of-hours. People with cancer were more likely to contact the NHS telephone advice line (63%) (χ2 (4)=1004, p<0.001) or primary care out-of-hours (62%) (χ2 (4)=1924,p<0.001) and have hospital admissions (88%) (χ2 (4)=2644, p<0.001). People with organ failure (79%) contacted the ambulance service most frequently (χ2 (4)=584, p<0.001). Demographic factors associated with more unscheduled care were older age, social deprivation, living in own home and dying of cancer. People dying with organ failure formed the largest group in the cohort and had the highest NHS costs as a group. The cost of providing services in the community was estimated at 3.9% of total unscheduled care costs despite handling most out-of-hours calls.Conclusions Over 90% of people used NHS unscheduled care in their last year of life. Different underlying causes of death and demographic factors impacted on initial access and subsequent pathways of care. Managing more unscheduled care episodes in the community has the potential to reduce hospital admissions and overall costs

Massive Open Online Courses (MOOCs) as a Window into the Veterinary Profession

Catriona Bell – ORCID: 0000-0001-8501-1697 https://orcid.org/0000-0001-8501-1697Item not available in this repository.Previously deposited in Edinburgh University repository at: https://www.research.ed.ac.uk/en/publications/massive-open-online-courses-moocs-as-a-window-into-the-veterinaryMassive open online courses (MOOCs) are freely available online courses open to anyone who registers and typically are associated with thousands or hundreds of thousands of participants. Using an established online platform, the authors created and delivered a five-week MOOC aimed primarily at prospective veterinary students, but open to anyone with an interest in finding out more about the veterinary profession in general. 11,911 people signed up for the course, and of these, 8137 interacted in some way with the course and 1716 received a certificate of completion. The majority of participants (84 per cent) were female, and there was a wide age range (under 18 to over 65). Most participants were from North America or the UK. 65 per cent of those completing the entry survey were hoping or intending to work in the vet profession in the future, while 33 per cent were not. Qualitative data indicated that the course was helpful in aiding those undecided as to whether they wanted to be a veterinarian or not to decide one way or another whether they want to pursue veterinary medicine as a career. Furthermore, the course was seen as being a useful introduction to the veterinary profession even for those who had no intention of working in the field.https://doi.org/10.1136/vr.103979180pubpub

Using illness trajectories to inform person-centred, advance care planning

What you need to know- Most patients with progressive illness follow characteristic trajectories of decline, previously identified as rapid, intermittent, or a gradual decline from a low baseline- Multimorbidity is increasingly common and follows a distinct fourth trajectory- An understanding of the dynamic multidimensional trajectories of patients with progressive illnesses helps clinicians consider individual holistic needs and have meaningful conversations with patients and families about advance care planning- In patients with an acute deterioration in health (such as from an infection), considering the main underlying illness trajectory helps guide shared decision making about realistic current and future treatment and care option

Outcomes, experiences and palliative care in major stroke:a multicentre, mixed-method, longitudinal study

Background: Case fatality after total anterior circulation stroke is high. Our objective was to describe the experiences and needs of patients and caregivers, and to explore whether, and how, palliative care should be integrated into stroke care. Methods: From 3 stroke services in Scotland, we recruited a purposive sample of people with total anterior circulation stroke, and conducted serial, qualitative interviews with them and their informal and professional caregivers at 6 weeks, 6 months and 1 year. Interviews were transcribed for thematic and narrative analysis. The Palliative Care Outcome Scale, EuroQol-5D-5L and Caregiver Strain Index questionnaires were completed after interviews. We also conducted a data linkage study of all patients with anterior circulation stroke admitted to the 3 services over 6 months, which included case fatality, place of death and readmissions. Results: Data linkage (n = 219) showed that 57% of patients with total anterior circulation stroke died within 6 months. The questionnaires recorded that the patients experienced immediate and persistent emotional distress and poor quality of life. We conducted 99 interviews with 34 patients and their informal and professional careers. We identified several major themes. Patients and caregivers faced death or a life not worth living. Those who survived felt grief for a former life. Professionals focused on physical rehabilitation rather than preparation for death or limited recovery. Future planning was challenging. “Palliative care” had connotations of treatment withdrawal and imminent death. Interpretation: Major stroke brings likelihood of death but little preparation. Realistic planning with patients and informal caregivers should be offered, raising the possibility of death or survival with disability. Practising the principles of palliative care is needed, but the term “palliative care” should be avoided or reframed