Palliative Medicine最新文献

Background: Delirium is common and distressing for hospice in-patients. Hospital-based research shows delirium may be prevented by targeting its risk factors. Many preventative strategies address patients' fundamental care needs. However, there is little research regarding how interventions need to be tailored to the in-patient hospice setting.

Aim: To explore the behaviours of hospice in-patient staff in relation to delirium prevention, and the influences that shape these behaviours.

Design: Focused ethnography supported by behaviour change theory. Observation, semi-structured interviews and document review were conducted.

Setting/participants: A total of 89 participants (multidisciplinary staff, volunteers, patients and relatives) at two UK in-patient hospice units.

Results: Hospice clinicians engaged in many behaviours associated with prevention of delirium as part of person-centred fundamental care, without delirium prevention as an explicit aim. Carrying out essential care tasks was highly valued and supported by adequate staffing levels, multidisciplinary team engagement and role clarity. Patients' reduced physical capability limited some delirium prevention behaviours, as did clinicians' behavioural norms related to prioritising patient comfort. Delirium prevention was not embedded into routine assessment and care decision-making, despite its potential to reduce patient distress.

Conclusions: The value placed on fundamental care in hospices supports delirium prevention behaviours but these require adaptation as patients become closer to death. There is a need to increase clinicians' understanding of the potential for delirium prevention to reduce patient distress during illness progression; to support inclusion of delirium prevention in making decisions about care; and to embed routine review of delirium risk factors in practice.

Background: People with Stage IV cancer face physical and emotional challenges impacting quality of life. Conventional quality of life measures do not capture daily fluctuations in patient well-being.

Aim: This pilot study used daily diaries to explore the concept of a "good day" living with advanced cancer and to identify activities associated with "good days" as well as associations between daily "goodness" and conventional quality of life measures.

Design: Twenty participants with Stage IV cancer completed daily diaries on a mobile app over a 14-day period. Participants rated each day's "goodness" and documented daily activities. Statistical analyses examined associations between daily "goodness" ratings, activities, and baseline quality of life measures from the Patient-Reported Outcomes Measurement Information System (PROMIS).

Setting/participants: Participants were recruited from oncology clinics and online research registries. Inclusion criteria included age over 18 years old, having Stage IV cancer, and owning a smartphone.

Results: Analysis of 178 completed surveys from 18 participants revealed overall average "goodness" ratings exhibited more within-person than between-person variability. Average goodness was positively related to the PROMIS domain of Ability to Participate in Social Roles/Activities and negatively related to PROMIS domains of Anxiety and Depression. Participants reported better days when they engaged in leisure activities and worse days when they spent time managing physical symptoms.

Conclusions: This study highlights the importance of understanding day-to-day quality of life in individuals with advanced cancer. Further research is needed to assess quality of life longitudinally and to develop personalized supportive and palliative care interventions in this population.

Background: The limited palliative care evidence base is poorly amenable to existing grading schemes utilized in guidelines. Many recommendations are based on expert consensus or clinical practice standards, which are often considered 'low-quality' evidence. Reinforcing provider hesitancy in translating recommendations to practice has implications for patient care.

Aim: To rationalize the selection of an appropriate grading system for rating evidence to support recommendations made in palliative care clinical practice guidelines.

Design: Review of the methodology sections of international palliative care guidelines published in English identified five grading systems comparison: Grading of Recommendations, Assessment, Development and Evaluations (GRADE); the Scottish Intercollegiate Guidelines Network (SIGN); Infectious Diseases Society of America-European Society for Medical Oncology (IDSA-ESMO); Confidence in the Evidence from Reviews of Qualitative research (CERQual) and the National Service Framework for Long Term Conditions (NSF-LTC).

Results: There is heterogeneity among grading systems used in published palliative care or terminal symptom management guidelines. GRADE has been increasingly adopted for its methodological rigour and inter-guideline consistency with other medical associations. CERQual has the potential to support recommendations informed by qualitative evidence, but its role in clinical guidelines is less defined. The IDSA-ESMO system has an intuitive typology with the ability to categorize tiers of lower-quality evidence.

Conclusions: It is challenging to apply commonly used grading systems to the palliative care evidence base, which often lacks robust randomized controlled trials (RCTs). Adoption of IDSA-ESMO offers a feasible and practical alternative for lower-resourced guideline developers and palliative clinicians without a prerequisite for methodological expertise.

Background: Palliative care and supportive care provided in the home for people with heart failure can improve quality of life, caregiver wellbeing and reduce healthcare costs. Identifying components of home-based palliative and supportive care in heart failure is useful to inform tailored care to people with heart failure.

Aim: To identify and describe components of home-based palliative and supportive care in adults with heart failure.

Design: A scoping review was undertaken in accordance with Joanna Briggs Institute guidelines. The protocol was registered prospectively with the Open Science Framework (https://doi.org/10.17605/OSF.IO/GHCME).

Data sources: Embase, PubMed, CINAHL and Cochrane databases were searched from inception in May 2023 and re-run in January 2024. Original research focussed on palliative and supportive care in the home setting that included adults diagnosed with heart failure who have not undergone nor awaiting a heart transplant was included.

Results: Results were extracted from 13 papers based on eight studies. The findings highlight that nurses supported by a multidisciplinary team, providing symptom management, patient and carer education and discussion of goals of care and advance care planning, facilitates home-based palliative and supportive care for people with heart failure.

Conclusion: Ensuring patient and caregiver-centred care supported by a multidisciplinary team is essential to delivering home-based palliative and supportive care for people with heart failure. Further research focussed on the role of digital interventions in home-based palliative and supportive care, the composition of the multidisciplinary team and research which includes individuals across all stages of heart failure is needed.

Background: Grieving is a natural process, and many people adjust with support from family and friends. Around 40% of people would benefit from additional input. Online bereavement support interventions may increase access to support. Evidence regarding their acceptability and effectiveness is emerging but needs to be synthesised.

Aim: To synthesise evidence on the feasibility, acceptability, effectiveness, impacts and implementation of online interventions to improve wellbeing, coping and quality of life after bereavement.

Design: A rapid review of evidence regarding online bereavement support. We appraised study quality using AMSTAR 2 and the Mixed Methods Appraisal Tool.

Data sources: English language articles published 1 January 2010 to 4 January 2024, using Ovid MEDLINE, Ovid Embase and APA PsycINFO. Eligible articles examined formal and informal online interventions to improve bereavement outcomes.

Results: We screened 2050 articles by title and abstract. Four systematic reviews and 35 individual studies were included. Online bereavement support was feasible, acceptable and effective in reducing grief intensity, stress-related outcomes and depression. Where reported, participant retention was typically >70%. Positive impacts included: access to a supportive community at any time, reduced isolation; opportunities to process feelings; normalisation of loss responses; access to coping advice and opportunities for meaning-making and remembrance. Negative impacts included upset due to insensitive comments from others via unmoderated online forums.

Conclusion: Online interventions can widen access to acceptable, effective bereavement support and improve outcomes for bereaved people. National policies and clinical guidelines relating to bereavement support need to be updated to take account of online formats.

Background: Prospectively tracking errors can improve patient safety but little is known about how to successfully implement error reporting in a home-based palliative care context.

Aim: Explore the feasibility of implementing an error reporting system in a home-based palliative care program in Toronto, Canada, and describe the possible factors that may influence uptake.

Design: A convergent mixed-methods approach was used. Participants prospectively documented errors using a novel reporting tool and completed monthly surveys. Following the reporting period, we conducted a semi-structured interview exploring participants' experiences and perceived factors influencing reporting behaviors. Error, survey, and interview data were analyzed separately, then integrated for comparison.

Setting and participants: Thirteen palliative care physicians from a single home-based palliative care organization in Toronto, Canada anonymously reported errors between October 2021 and September 2022. Of these, six participated in the exit interview.

Results: Participants reported 195 errors; one-third (n = 65) involved internal staff or systems. Three themes describe the factors impacting the likelihood of reporting errors: (1) High levels of cognitive burden decreases the likelihood of error reporting; (2) Framing errors as opportunities to learn rather than reason for punishment improves likelihood of error reporting; (3) Knowing that error data will improve patient safety motivates individuals to report errors.

Conclusions: Physicians are amenable to error reporting activities so long as data is used to improve patient safety. The collaborative nature of care in a home-based palliative care context may present unique challenges to translating error reporting to improved patient safety.

Background: In Confucian-influenced Asian societies, explicit end-of-life conversations are uncommon and family involvement in decision-making is crucial, which complicates the adoption of culturally sensitive advance care planning.

Aim: To develop a consensus definition of advance care planning and provide recommendations for patient-centered and family-based initiatives in Asia.

Design: A five-round Delphi study was performed. The rating of a definition and 84 recommendations developed based on systematic reviews was performed by experts with clinical or research expertise using a 7-point Likert scale. A median = 1 and an inter-quartile range = 0-1 were considered very strong agreement and very strong consensus, respectively.

Setting/participants: The Delphi study was carried out by multidisciplinary experts on advance care planning in five Asian sectors (Hong Kong/Japan/Korea/Singapore/Taiwan).

Results: Seventy-seven of 115 (67%) experts rated the statements. Advance care planning is defined as "a process that enables individuals to identify their values, to define goals and preferences for future medical treatment and care, to discuss these values, goals, and preferences with family and/or other closely related persons, and health-care providers, and to record and review these preferences if appropriate." Recommendations in the domains of considerations for a person-centered and family-based approach, as well as elements, roles and tasks, timing for initiative, policy and regulation, and evaluations received high levels of agreement and consensus.

Conclusions: Our definition and recommendations can guide practice, education, research, and policy-making in advance care planning for Asian populations. Our findings will aid future research in crafting culturally sensitive advance care planning interventions, ensuring Asians receive value-aligned care.

Background: Policy and practice encourages patients to engage in self-care, with individual patient management and remote monitoring of disease. Much is known of the moderate stage of chronic disease, without a clear understanding of how self-care applies towards the end of life.

Aim: To review the current evidence on practices of self-care in life-limiting conditions and its impacts on healthcare utilisation, quality of life and associated costs.

Design: We systematically searched 10 scientific databases (MEDLINE, CINAHL, Embase, PsycINFO, Cochrane Central, Cochrane Database of Systematic Reviews, Scopus, Sociological Abstracts, Social Work Abstracts and Health Management Information Consortium) from inception to October 2023 with citation and hand searching. A narrative synthesis was undertaken, with quality and relevance assessed using Gough's Weight of Evidence framework. Titles and abstracts were independently screened by three researchers.

Results: Findings from 33 studies revealed self-care as increasingly burdensome or unfeasible towards the end of life, with patients delaying use of professional care. Self-care became increasingly burdensome for patients, carers and professionals as illness progressed. Self-monitoring may exacerbate hospitalisations as patients delayed seeking professional help until crises arose. Findings regarding quality were inconclusive, with some evidence suggesting that self-care can decrease care costs.

Conclusions: This review has shown that research on self-care is an evolving area of study, with a current focus on acute care and hospitalisations. Future research should seek to provide a more complete account of the relation between self-care and non-acute care use, and quality, with further efforts to study self-care costs incurred through self-funding.

Background: The increase in non-communicable disease burdens and aging populations has led to a rise in the need for palliative care across settings. In resource-limited settings such as Indonesia, however, notably in rural areas, there is a lack of professional palliative care. Little is known about specific palliative care navigation, as previous studies have mostly focused on cancer care navigation. A locally tailored approach is crucial.

Aim: To explore how patients and families navigate palliative care and the problems they experience.

Design: An ethnographic study using in-depth interviews and observations, analyzed using reflexive thematic analysis.

Setting/participants: Interviews with 49 participants (patients, family caregivers, and health professionals) and 12 patient-family unit observations in Banyumas, Indonesia.

The analysis: Patients and families navigated palliative care through different strategies: (1) helping themselves, (2) utilizing complementary and alternative medicine, (3) avoiding discussing psychological issues, (4) mobilizing a compassionate and advocating community, and (5) seeking spiritual care through religious practices.

Conclusions: Our participants used intricate care networks despite limited resources in navigating palliative care. Several problems were rooted in barriers in the healthcare system and a lack of palliative care awareness among the general public. Local primary health centers could be potential palliative care leaders by building upon pre-existing programs and involving community health volunteers. Cultivating a shared philosophy within the community could strengthen care collaboration and support.