Background: Evidence suggests that involving General Practitioners in the care of patients with palliative care needs may improve patient outcomes.
Aim: To evaluate whether a two-tiered intervention involving training in palliative care and a new consultation model in primary care for patients with palliative care needs is feasible and could reduce patients' symptom burden.
Design: Before-after study including an internal pilot.
Setting/participants: Nine general practitioners working in a health region in Portugal and 53 patients with palliative care needs from their patient lists were recruited. General Practitioners received training in palliative care and used a new primary palliative care consultation model, with medical consultations every 3 weeks for 12 weeks. The primary outcome was physical symptom burden, self-reported using the Integrated Palliative care Outcome Scale (IPOS) patient version (min.0-max.1000). Secondary outcomes included emotional symptoms (min.0-max.400) and communication/practical issues (min.0-max.300).
Results: Of the 35/53 patients completed the 12-week intervention (mean age 72.53 years, SD = 13.45; 54.7% female). All had advanced disease: one third had cancer (n = 13), one third had congestive heart failure (n = 12); others had chronic kidney disease and chronic obstructive pulmonary disease. After the 12 weeks of intervention, there was a reduction in physical symptom burden [mean difference from baseline of 71.42 (95%CI 37.01-105.85) with a medium-large effect size (0.71], and in emotional symptom burden [mean difference 42.86 (95%CI 16.14-69.58), with a medium effect size (0.55)]. No difference was found for communication/practical issues.
Conclusions: Our intervention can be effective in reducing patients' physical and emotional symptoms.
Trial registration: ClinicalTrials.gov ID - NCT05244590. Registration: 14th February 2022.
Background: For people with limited lifetime expectancy, the benefit of many medications may be outweighed by their potential harms. Despite the relevance of reducing unnecessary medication use, deprescribing is poorly enacted in primary care practice.
Aim: This study aims to describe factors, as identified by primary care professionals and patients, that influence deprescribing in the last phase of life.
Design: Semi-structured interviews were conducted and analysed using a thematic approach.
Setting/participants: This study was performed in primary care settings, including general practices, hospices and community care teams in The Netherlands. Purposefully identified primary care professionals (general practitioners, pharmacists, nurses) and patients with limited lifetime expectancy due to advanced chronic illness or cancer and their caretakers were interviewed.
Results: Three themes emerged detailing factors influencing deprescribing in the last phase of life in primary care: (1) non-maleficence, the wish to avoid additional psychological or physical distress; (2) reactive care, the lack of priority and awareness of eligible patients; and (3) discontinuity of care within primary care and between primary care and specialty care.
Conclusions: Deprescribing is an incremental process, complicated by the unpredictability of life expectancy and attitudes of patients and health care professionals that associate continued medication use with clinical stability. Opportunities to facilitate the deprescribing process and its acceptance include the routinely systematic identification of patients with limited life expectancy and potentially inappropriate medications, and normalisation of deprescribing as component of regular primary care, occurring for all patients and continuing into end-of-life care.
Background: Palliative care is seldom integrated in healthcare in fragile, conflict affected and vulnerable settings with significant refugee populations.
Aim: This study aimed to evaluate the integration of palliative care into a fragile, conflict affected and vulnerable community in Northern Uganda.
Design: Consecutive Rapid Participatory Appraisals were conducted to evaluate the integration of palliative care in Adjumani District. The first established a baseline and the second, 4 years later, evaluated progress. Data collection included documentary review, key informant interviews and direct observation.
Setting/participants: A rural district in Uganda with equal numbers of refugees and host populations living side-by-side. 104 key informants were interviewed, and practice observed in 11 health facilities.
Results: At baseline, palliative care was not routinely integrated in the health system. Barriers included health system challenges, cultural beliefs, understanding and trust, mental health issues, gaps in palliative care provision, the role of the community and beliefs about illness impacted care with the village health teams being a trusted part of the health system. Following integration activities including training, mentorship and community sensitisation, the repeat rapid appraisal after 4 years showed a significant increase in palliative care delivery. New themes identified included increased provision of palliative care, the impact of training and community engagement and ownership of palliative care.
Conclusion: Community engagement and participation, training interventions and referral pathways enabled the integration of palliative care. Rapid Participatory Appraisal provides a useful framework to evaluate activities aimed at integration of palliative care in a community.
Background: Coordination and communication challenges in home-based palliative care complicate transitions from hospital care. Electronic symptom monitoring enables real-time data collection, enhancing patient-provider communication. However, a systematic evaluation of its effectiveness in home-based palliative care is lacking.
Aim: To analyze the feasibility, effectiveness, and limitations of electronic symptom monitoring in home-based palliative care, assess the evidence quality, identify the evidence gap, and suggest implications for future research and practice.
Design: This study uses systematic review, meta-analysis, and narrative synthesis (CRD42023457977) to analyze relevant studies until September 2023.
Data sources: Electronic searches in MEDLINE, CENTRAL, and Embase until September 2023, complemented by hand-searching of references and citations.
Results: This study included twenty studies. The majority of patients positively engage in electronic symptom monitoring, which could improve their quality of life, physical and emotional well-being, and symptom scores without a significant increase in costs. However, firm conclusions about the effects of electronic symptom monitoring on outcomes like survival, hospital admissions, length of stay, emergency visits, and adverse events were limited due to significant variability in the reported data or inadequate statistical power.
Conclusion: Introducing electronic symptom monitoring in home-based palliative care holds potential for enhancing patient-reported outcomes, potentially decreasing hospital visits and costs. However, inconsistency in current studies arising from diverse monitoring systems obstructs comparability. To advance, future high-quality research should employ standardized follow-up periods and established scales to better grasp the benefits of electronic symptom monitoring in home-based palliative care.
Background: Growing global demand for palliative care services has prompted generalist clinicians to provide adjunct support to specialist teams. Paramedics are uniquely placed to respond to these patients in the community. However, embedding palliative care principles into their core business will require multifactorial interventions at structural, healthcare service and individual clinician and consumer levels.
Aim: To develop a palliative paramedicine framework suitable for national implementation, to standardise best practice in Australia.
Design: Delphi study utilising questionnaire completion; each round informed the need for, and content of, the next round. Free text comments were also sought in Round 1. Two rounds of Delphi were undertaken.
Setting/participants: Sixty-eight participants took part in Round 1, representing six countries, and 66 in Round 2. Participants included paramedics, palliative care doctors and nurses, general practitioners, researchers and carers with lived experience and expertise in palliative paramedicine.
Results: Seventeen of the original 24 components gained consensus; 6 components were modified; and 9 new components arose from Round 1. All modified and new components gained consensus in Round 2. Only one original component did not gain consensus across both rounds and was excluded from the final 32-component framework.
Conclusion: This study has developed a comprehensive national framework addressing the macro-, meso- and micro-level interventions required to standardise palliative paramedicine across Australia. Future research ought to engage a multidisciplinary team to create an implementation strategy, addressing any perceived barriers, facilitators and challenges for applying the framework into policy and practice.
Background: The final year of life is often associated with increasing health complexities and use of health services. This frequently includes admission to an acute hospital which may or may not convey overall benefit. This uncertainty makes decisions regarding admission complex for clinicians. There is evidence of much variation in approaches to admission.
Aims: To explore how Primary Care clinicians approach hospitalisation decisions for people in the final year of life.
Design: Systematic literature review and narrative synthesis.
Data sources: We searched the following databases from inception to April 2023: CINAHL, Cochrane Library, Embase, MedLine, PsychInfo and Web of Science followed by reference and forward citation reviews of included records.
Results: A total of 18 studies were included: 14 qualitative, 3 quantitative and 1 mixed methods study. As most of the results were qualitative, we performed a thematic analysis with narrative synthesis. Six key themes were identified: navigating the views of other stakeholders; clinician attributes; clinician interpretation of events; the perceived adequacy of the current setting and the alternatives; system factors and continuity of care.
Conclusion: This review shows that a breadth of factors influence hospitalisation decisions. The views of other stakeholders take great importance but it is not clear how these views are, or should be, should be balanced. Clinician factors, such as experience with palliative care and clinical judgement, are also important. Future research should focus on how different aspects of the decision are balanced and to consider if, and how, this could be improved to optimise patient-centred outcomes and use of health resources.