A palliative care approach for people with advanced heart failure : recognition of need, transitions in care and impact on patients, family carers and clinicians

Background: Despite international and national consensus guidelines, patients with advanced heart failure (HF) have significant unmet palliative care needs. UK policy recommends identification of those requiring palliative care based on prognosis (last year of life). However, HF has an unpredictable course, and clinicians might not discuss a palliative approach for fear of causing alarm and destroying hope.Aim: To explore aspects of a palliative care approach for people with advanced HF: recognition of need, transitions in care and impact on patients, family carers and clinicians.Methods: Mixed method study with integration of findings. Systematic literature review of prognostic variables associated with the last year of life in HF. Analysis of General Practice Research Database (GPRD) records to compare recognition of the need for palliative care between cancer and HF patients. Qualitative semi-structured interviews with patients receiving a palliative approach to care, their carers and clinicians.Findings: GPRD data demonstrated gross inequity between documented recognition of the need for a palliative care approach; HF patients were poorly represented on the palliative care register, and those that were, were registered close to death. Prognostic markers, identified in both the systematic review and GPRD, had limited clinical usefulness for identifying the last year of life. From interview data, clinicians appeared reluctant to discuss a palliative care approach without clear irreversible deterioration of the patient. However, patients welcomed, and some initiated, conversations regarding the change in focus of care. Following such discussion all involved found this approach beneficial, even with subsequent periods of stability or improvement. Other barriers included lack of recognition of symptoms by clinicians and difficulties in delivering proactive care.Conclusions: A palliative care approach before the very end of life is beneficial in this group. A problem-based flexible approach to recognising the need for palliative care, rather than prognosis is recommended

Medical students writing on death, dying and palliative care : a qualitative analysis of reflective essays

Background: Medical students and doctors are becoming better prepared to care for patients with palliative care needs and support patients at the end of life. This preparation needs to start at medical school. Objective: To assess how medical students learn about death, dying and palliative care during a clinical placement using reflective essays and to provide insights to improve medical education about end of life care and/or palliative care. Methods: Qualitative study in which all reflective essays written by third year medical students in one year from a UK medical school were searched electronically for those that included ‘death’, ‘dying’ and ‘palliative care’. The anonymised data were managed using QSR NVivo 10 software, and a systematic analysis was conducted in three distinct phases: (1) open coding; (2) axial coding and (3) selective coding. Ethical approval was received. Results: Fifty-four essays met the inclusion criteria from 241 essays screened for the terms ‘death’, ‘dying’ or ‘palliative’, 22 students gave consent for participation and their 24 essays were included. Saturation of themes was reached. Three overarching themes were identified: emotions, empathy, and experiential and reflective learning. Students emphasised trying to develop a balance between showing empathy and their emotional state. Students learned a lot from clinical encounters and watching doctors manage difficult situations, as well as from their refection during and after the experience. Conclusions: Reflective essays give insights into the way students learn about death, dying and palliative care and how it affects them personally as well as the preparation that is needed to be better equipped to deal with these kinds of experiences. Analysis of the essays enabled the proposal of new strategies to help make them more effective learning tools and to optimise students’ learning from a palliative care attachment

Medical students writing on death, dying and palliative care:a qualitative analysis of reflective essays

Background Medical students and doctors are becoming better prepared to care for patients with palliative care needs and support patients at the end of life. This preparation needs to start at medical school. Objective To assess how medical students learn about death, dying and palliative care during a clinical placement using reflective essays and to provide insights to improve medical education about end-of-life care and/or palliative care. Methods Qualitative study in which all reflective essays written by third-year medical students in 1 year from a UK medical school were searched electronically for those that included ‘death’, ‘dying’ and ‘palliative care’. The anonymised data were managed using QSR NVivo 10 software, and a systematic analysis was conducted in three distinct phases: (1) open coding; (2) axial coding and (3) selective coding. Ethical approval was received. Results 54 essays met the inclusion criteria from 241 essays screened for the terms ‘death’, ‘dying’ or ‘palliative’; 22 students gave consent for participation and their 24 essays were included. Saturation of themes was reached. Three overarching themes were identified: emotions, empathy and experiential and reflective learning. Students emphasised trying to develop a balance between showing empathy and their emotional state. Students learnt a lot from clinical encounters and watching doctors manage difficult situations, as well as from their refection during and after the experience. Conclusions Reflective essays give insights into the way students learn about death, dying and palliative care and how it affects them personally as well as the preparation that is needed to be better equipped to deal with these kinds of experiences. Analysis of the essays enabled the proposal of new strategies to help make them more effective learning tools and to optimise students’ learning from a palliative care attachment

Palliative care among heart failure patients in primary care: A comparison to cancer patients using english family practice data

© 2014 Gadoud et al. Introduction: Patients with heart failure have a significant symptom burden and other palliative care needs often over a longer period than patients with cancer. It is acknowledged that this need may be unmet but by how much has not been quantified in primary care data at the population level. Methods: This was the first use of Clinical Practice Research Datalink, the world's largest primary care database to explore recognition of the need for palliative care. Heart failure and cancer patients who had died in 2009 aged 18 or over and had at least one year of primary care records were identified. A palliative approach to care among patients with heart failure was compared to that among patients with cancer using entry onto a palliative care register as a marker for a palliative approach to care. Results: Among patients with heart failure, 7% (234/3 122) were entered on the palliative care register compared to 48% (3 669/7 608) of cancer patients. Of heart failure patients on the palliative care register, 29% (69/234) were entered onto the register within a week of their death. Conclusions: This confirms that the stark inequity in recognition of palliative care needs for people with heart failure in a large primary care dataset. We recommend a move away from prognosis based criteria for palliative care towards a patient centred approach, with assessment of and attention to palliative needs including advance care planning throughout the disease trajectory

What are the main symptoms and concerns reported by patients with advanced chronic heart failure?—a secondary analysis of the Palliative care Outcome Scale (POS) and Integrated Palliative care Outcome Scale (IPOS)

© Annals of Palliative Medicine. All rights reserved. There is a lack of valid disease-specific patient-reported outcome measures (PROMs) for detecting symptoms and concerns in patients with advanced chronic heart failure (CHF). The Palliative care Outcome Scale (POS) and Integrated Palliative care Outcome Scale (IPOS) are specifically developed to capture the main symptoms and concerns of people severely affected by advanced disease. The aim of this study was to determine whether POS and IPOS captures the main symptoms and concerns self-reported by patients with advanced CHF. A secondary analysis of existing POS/IPOS data collected in three longitudinal studies was conducted. POS and IPOS start with an open-ended question for patients to report their main problems and concerns, followed by subsequent closed questions on a range of symptoms and other concerns. Descriptive statistics were used to report the results. The 102 participants from the three datasets had median age 81 years (SD ±9.84 years); 62% male; 87% white. A total of 107 concerns were reported in the first, open POS/IPOS question seeking the patient’s main concerns. Of these, 83 (77%) were reflected in the subsequent IPOS/POS closed questions. The high correspondence between the free-text responses and the closed questions indicates that most issues are captured by the POS/IPOS items. In conclusion, the generic versions of POS and IPOS do capture the main problems and concerns of patients with advanced CHF. Minor adaptations and further psychometric validation of POS and IPOS are needed in this population

“A Friend in the Corner”: Supporting people at home in the last year of life via telephone and video consultation – an evaluation

YesObjective: To evaluate a 24/7, nurse led telephone and video-consultation support service for patients thought to be in the last year of life in Bradford, Airedale, Wharfedale and Craven. Method: Activity and other data recorded at the time of calls were analysed. Interviews with 13 participants captured patients and carers perspectives. Results: Between April 1st 2014 and March 31st 2015, 4648 patients were registered on the Gold Line. 42% had a non-cancer diagnosis and 46% were not known to specialist palliative care services. The median time on the caseload was 49 days (range 1-504 days). 4533 telephone calls and 573 video consultations were received from 1813 individuals. 39% of the 5106 calls were resolved by Gold Line team without referral to other services. 69% of calls were made outside normal working hours. Interviews with patients and carers reported experiences of support and reassurance and the importance of practical advice. Conclusion: A nurse led, 24/7 telephone and video consultation service can provide valuable support for patients identified to be in the last year of life and their cares. The line enabled them to feel supported and remain in their place of residence, reducing avoidable hospital admissions and use of other services. Providing this service may encourage health care professionals to identify patients approaching the last year of life, widening support offered to this group of patients beyond those known to specialist palliative care services.Health Foundation adn Shared Purpos

Palliative care needs-assessment and measurement tools used in patients with heart failure:a systematic mixed-studies review with narrative synthesis

Patients with heart failure have comparable illness burden and palliative care needs to those with cancer. However, few of them are offered timely palliative care. One main barrier is the difficulty in identifying those who require palliative care. Several palliative care needs-assessment/measurement tools were used to help identify these patients and assess/measure their needs, but it is not known which one is the most appropriate for this population. This review aimed to identify the most appropriate palliative care needs-assessment/measurement tools for patients with heart failure. Cochrane Library, MEDLINE Complete, AMED, PsycINFO, CINAHL Complete, EMBASE, EThOS, websites of the identified tools, and references and citations of the included studies were searched from inception to 25 June 2020. Studies were included if they evaluated palliative care needs-assessment/measurement tools for heart failure populations in terms of development, psychometrics, or palliative care patient/needs identification. Twenty-seven papers were included regarding nineteen studies, most of which were quantitative and observational. Six tools were identified and compared according to their content and context of use, development, psychometrics, and clinical applications in identifying patients with palliative care needs. Despite limited evidence, the Needs Assessment Tool: Progressive Disease – Heart Failure (NAT:PD-HF) is the most appropriate palliative care needs-assessment tool for use in heart failure populations. It covers most of the patient needs and has the best psychometric properties and evidence of identification ability and appropriateness. Psychometric testing of the tools in patients with heart failure and evaluating the tools to identify those with palliative care needs require more investigation.4

A pilot study of interprofessional palliative care education of medical students in the UK and USA

Background Educating medical students to care for patients at the end-of-life is increasingly recognised as an essential component of training. Traditionally, medical student programmes are run by doctors, but patient care is delivered by an interprofessional team. Our programmes in the UK and USA independently developed a teaching experience led by an interprofessional team of palliative care health professionals. Objectives This study explores the palliative care health professionals’ perceptions, regarding their unique role in medical student palliative care education. Methods This is the first study to ascertain views of an interprofessional team delivering palliative care education to medical students. Focus groups enable interaction between members of the group as well as the generation of consensus of comments among group members. Results Two major themes were identified: perceived benefits and value of the experience, and the challenges and lessons learnt from the experiences. Conclusions Despite different structures and settings, this experiential learning in palliative care provided a rewarding interprofessional experience that has historically been difficult to achieve

Online forums support palliative and bereavement care: machine learning and natural language processing analysis of qualitative data from the internet

Palliative public health policy emphasises the value of sustainable community-led palliative care and psychosocial support. However, there are significant challenges to adequate palliative and bereavement care provision including precarious funding, inconsistent availability, and recent challenges presented by the COVID-19 pandemic. Minority groups and those at the greatest socioeconomic disadvantage are among those least likely to receive the care they need. Digital services may circumvent these challenges, allowing people to self-manage their needs. This research aimed to investigate how community-led online forums are used to support people facing life-limiting illness, their caregivers, and bereaved peopl

Research priorities in advanced heart failure: James Lind alliance priority setting partnership.

OBJECTIVE: To determine research priorities in advanced heart failure (HF) for patients, carers and healthcare professionals. METHODS: Priority setting partnership using the systematic James Lind Alliance method for ranking and setting research priorities. An initial open survey of patients, carers and healthcare professionals identified respondents' questions, which were categorised to produce a list of summary research questions; questions already answered in existing literature were removed. In a second survey of patients, carers and healthcare professionals, respondents ranked the summary research questions in order of priority. The top 25 unanswered research priorities were then considered at a face-to-face workshop using nominal group technique to agree on a 'top 10'. RESULTS: 192 respondents submitted 489 responses each containing one or more research uncertainty. Out-of-scope questions (35) were removed, and collating the responses produced 80 summary questions. Questions already answered in the literature (15) were removed. In the second survey, 65 questions were ranked by 128 respondents. The top 10 priorities were developed at a consensus meeting of stakeholders and included a focus on quality of life, psychological support, the impact on carers, role of the charity sector and managing prognostic uncertainty. Ranked priorities by physicians and patients were remarkably divergent. CONCLUSIONS: Engaging stakeholders in setting research priorities led to a novel set of research questions that might not have otherwise been considered. These priorities can be used by researchers and funders to direct future research towards the areas which matter most to people living with advanced HF