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.
Background Paramedics are increasingly being called to attend patients dying from advanced incurable conditions. However, confidence to deal with such calls varies, with many feeling relatively unskilled in this aspect of their role. A number of interventions have been piloted to improve their skills in end-of-life care but without a fully specified theoretical model. Theory of change models can provide theoretical and testable links from intervention activities to proposed long-term outcomes and indicate the areas for assessment of effectiveness. This study aimed to develop an intervention for improving paramedic end-of-life care for patients in the community. Methods A theory of change approach was used as the overarching theoretical framework for developing an intervention to improve paramedic end-of-life skills. Relevant stakeholders - including specialist community paramedics, ambulance call handlers and palliative care specialists - were recruited to five consecutive online workshops. Over multiple workshops, stakeholders decided on the desired impact, short- and long-term outcomes, and possible interventions. During and between these workshops a theory of change model was created, with the components shared with stakeholders. Results The stakeholders agreed the desired impact was to provide consistent, holistic, patient-centred, and effective end-of-life care. Four potential long-term outcomes were suggested: 1) increased use of anticipatory and regular end-of-life medications; 2) reduced end-of-life clinical and medication errors; 3) reduced unnecessary hospitalisations; 4) increased concordance between patient preferred and actual place of death. Key interventions focused on providing immediate information on what to do in such situations including: appraising the situation, developing an algorithm for a treatment plan (including whether or not to convey to hospital) and how to identify ongoing support in the community. Conclusions A theory of change approach was effective at identifying impact, outcomes, and the important features of an end of life intervention for paramedics. This study identified the need for paramedics to have immediate access to information and resources to support end-of-life care, which the workshop stakeholders are now seeking to develop as an intervention.
Background Paramedics are increasingly being called to attend patients dying from advanced incurable conditions. However, confidence to deal with such calls varies, with many feeling relatively unskilled in this aspect of their role. A number of interventions have been piloted to improve their skills in end-of-life care (EoLC) but without a fully specified theoretical model. Theory of Change models can provide theoretical and testable links from intervention activities to proposed long-term outcomes and indicate the areas for assessment of effectiveness. This study aimed to develop an intervention for improving paramedic EoLC for patients in the community. Methods A Theory of Change approach was used as the overarching theoretical framework for developing an intervention to improve paramedic end-of-life skills. Nine stakeholders - including specialist community paramedics, ambulance call handlers and palliative care specialists - were recruited to five consecutive online workshops, ranging between 60 and 90 min. Each workshop had 2–3 facilitators. Over multiple workshops, stakeholders decided on the desired impact, short- and long-term outcomes, and possible interventions. During and between these workshops a Theory of Change model was created, with the components shared with stakeholders. Results The stakeholders agreed the desired impact was to provide consistent, holistic, patient-centred, and effective EoLC. Four potential long-term outcomes were suggested: (1) increased use of anticipatory and regular end-of-life medications; (2) reduced end-of-life clinical and medication errors; (3) reduced unnecessary hospitalisations; (4) increased concordance between patient preferred and actual place of death. Key interventions focused on providing immediate information on what to do in such situations including: appraising the situation, developing an algorithm for a treatment plan (including whether or not to convey to hospital) and how to identify ongoing support in the community. Conclusions A Theory of Change approach was effective at identifying impact, outcomes, and the important features of an end-of-life intervention for paramedics. This study identified the need for paramedics to have immediate access to information and resources to support EoLC, which the workshop stakeholders are now seeking to develop as an intervention.
Background Patients with heart failure have significant palliative care needs, but few are offered palliative care. Understanding the experiences of delivering and receiving palliative care from different perspectives can provide insight into the mechanisms of successful palliative care integration. There is limited research that explores multi-perspective and longitudinal experiences with palliative care provision. This study aimed to explore the longitudinal experiences of patients with heart failure, family carers, and professional caregivers with palliative care services. Methods A secondary analysis of 20 qualitative three-month apart interviews with patients with heart failure and family carers recruited from three community palliative care services in the UK. In addition, four group interviews with professional caregivers from four different services were analysed. Data were analysed using ‘reflexive thematic’ analysis. Results were explored through the lens of Normalisation Process Theory. Results Four themes were generated: Impact of heart failure, Coping and support, Recognising palliative phase, and Coordination of care. The impact of heart failure on patients and families was evident in several dimensions: physical, psychological, social, and financial. Patients developed different coping strategies and received most support from their families. Although professional caregivers endeavoured to support the patients and families, this was sometimes lacking. Professional caregivers found it difficult to recognise the palliative phase and when to initiate palliative care conversations. In turn, patients and family carers asked for better communication, collaboration, and care coordination along the whole disease trajectory. Conclusions The study provided broad insight into the experiences of patients, family carers, and professional caregivers with palliative care. It showed the impact of heart failure on patients and their families, how they cope, and how they could be supported to address their palliative care needs. The study findings can help researchers and healthcare professionals to design palliative care interventions focusing on the perceived care needs of patients and families.
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