Palliative Medicine最新文献

Background: Palliative care is an essential component of children's health services but is accessed by fewer children than could potentially benefit.

Aim: Appraise the evidence to identify factors influencing referral and access to children's palliative care, and interventions to reduce barriers and improve referrals.

Design: Scoping review following the six stages of the Arksey and O'Malley framework. Data were charted using an adapted version of the socioecological framework.

Data sources: CINAHL, MEDLINE, PsycINFO, EMBASE, Cochrane Library were searched for primary studies of any design and literature/systematic reviews. Studies reporting barriers/facilitators and interventions in relation to referral of children with a life-limiting condition to palliative care, in any setting, were included.

Results: One hundred ninety five articles (primary qualitative and quantitative studies, reviews) were retained (153 reporting barriers/facilitators; 40 interventions; 2 both). Multiple factors were identified as barriers/facilitators: Individual level: underlying diagnosis, prognostic uncertainty, parental attitudes, staff understanding/beliefs; Interpersonal level: family support, patient-provider relationships, interdisciplinary communication; Organisational level: referral protocols, workforce, leadership; Community level: cultural norms, community resources, geography; Society level: policies and legislation, national education, economic environment, medication availability. Most of these factors were bi-directional in terms of influence. Interventions (n = 42) were mainly at the organisational level for example, educational programmes, screening tools/guidelines, workplace champions and new/enhanced services; one-third of these were evaluated.

Conclusion: Barriers/facilitators to paediatric palliative care referral are well described. Interventions are less well described and often unevaluated. Multi-modal approaches incorporating stakeholders from all levels of the socioecological framework are required to improve paediatric palliative care referral and access.

Background: As the number of people ageing in prison with complex healthcare needs continues to increase, so does the need for palliative care in the restrictive prison context. Palliative care for people in prison is facilitated by correctional officers, and prison- and hospital-based clinicians. A collective analysis of existing research to identify common experiences of these stakeholders globally has not been completed.

Aim: To explore the perceptions and experiences of correctional officers and prison- and hospital-based clinicians who facilitate palliative care for people in prison.

Design: A systematic review and meta-synthesis.

Data sources: Keywords and subject headings related to palliative care and prisons were used to search seven databases with no time limitations. Peer-reviewed research in English, containing qualitative data from stakeholders facilitating palliative care for people in prison were included, and appraised using the CASP tool.

Results: Two analytical themes emerged: (i) a prison lens on a palliative approach and (ii) coping complexities. Palliative care is 'translated' into the prison setting according to security and environmental constraints. Stakeholders experienced ethical, personal and professional difficulties, because prison-based palliative care did not align with community norms. Ambiguous policy and expectations regarding prioritising care needs and balancing custodial rules led to role stress.

Conclusions: Providing palliative care for people in prison is complex and impacts stakeholders and people in prison with palliative care needs. Supporting person-centred care through a multi-service approach, stakeholder education and standards will improve the quality and accessibility of care.

Background: Delays and limitations of palliative care in patients with liver transplantation-ineligible end-stage hepatocellular carcinoma according to Barcelona Clinic Liver Cancer staging system may be explained by different perceptions between hepatologists and palliative care physicians in the absence of shared guidelines.

Aim: To assess physicians' attitudes toward palliative care in end-stage hepatocellular carcinoma and to understand what the obstacles are to more effective management and co-shared between palliative care physicians and hepatologists.

Design: Members of the Italian Association for the Study of Liver Disease and the Italian Society of Palliative Care were invited to a web-based survey to investigate practical management attitude for patients with liver transplant-ineligible end-stage hepatocellular carcinoma.

Participants: Physician members of the of the two associations, representing several hospitals and services in the country.

Results: Ninety-seven hepatologists and 70 palliative care physicians completed the survey: >80% regularly follow 1-19 patients; 58% of hepatologists collaborate with palliative care physicians in the management of patients, 55% of palliative care physicians take care of patients without the aid of hepatologists. Management of cirrhosis differed significantly between the two groups in terms of prescription of albumin, esophagogastroduodenoscopy, anti-viral treatment, anticoagulation, indication to paracentesis and management of encephalopathy. Full-dose acetaminophen is widely used among hepatologists, while opioids are commonly used by both categories, at full dosage, regardless of liver function.

Conclusions: This survey highlights significant differences in the approach to patients with liver transplantation-ineligible end-stage hepatocellular carcinoma, reinforcing the need for shared guidelines and further studies on palliative care in the setting.

Background: Many individuals with advanced dementia die in hospital, despite preferring home death. Existing evidence of factors affecting their place of death is inconsistent. To inform policies/practices for meeting needs/preferences, systematically establishing the evidence is pertinent, particularly given the exponential rise in advanced dementia prevalence.

Aim: To identify factors influencing where people with advanced dementia die.

Design and data sources: This systematic review with meta-analysis was registered on PROSPERO (CRD42022366722). Medline, CINAHL, PsycINFO, SocINDEX and a grey literature database, Overton, were searched on 21/12/2022, supplemented by hand-searching/citation tracking. Papers reporting quantitative data on factors associated with place of death in advanced dementia were included and appraised using QualSyst. Data were analysed using random effects with the certainty of evidence determined using the GRADE criteria.

Results: Thirty-three papers involving >5 million individuals (mean age = 89.2 years) were included. Long-term care setting deaths were relatively common but hospice deaths were rarer. Marriage's association with home death underscores social networks' importance, while younger age's and male gender's associations with hospital death demonstrate patients' and families' interdependency. Pneumonia/COPD's opposing effects on hospital deaths with cancer/functional impairment highlight the challenges of advanced dementia care. Unlike hospital/nursing home bed availability's lack of effect, capitated funding (fixed-amount-per-patient-per-period) decreased hospital death likelihood.

Conclusion: This comprehensive review of place of death determinants highlight the profound challenges of advanced dementia end-of-life care. Given that bed capacity did not affect place of death, a capitation-based, integrated palliative care model would appear more likely to meet patients' needs in a resource-constrained environment.

Background: Patients with serious illness frequently report (temporary) wishes to hasten death. Even until the end-of-life, many patients also harbor a will to live. Although both phenomena are negatively correlated according to some studies, they can also co-exist. Knowledge about the complex relationship between the seemingly opposing wish to hasten death and will to live is limited, but crucial for delivering adequate care and understanding potential requests for assisted dying.

Aim: To study the correlation of and explore the relationship between wish to hasten death and will to live over 6 weeks.

Design: Observatory, prospective cohort study following a mixed methods design. Analysis of quantitative (Schedules of Attitudes Toward Hastened Death, a visual numerical scale and (additional) validated questionnaires) and qualitative (semi-structured interviews) data with illustrative case descriptions.

Setting/participants: Patients receiving palliative care with heterogenous underlying diseases from various care settings, before and after an open conversation on a possible desire to die.

Results: In n = 85 patients, wish to hasten death and will to live were strongly negatively correlated at three time points (baseline: r(65) = -0.647, p ⩽ 0.001; after 1 week: r(55) = -0.457, p ⩽ 0.001 and after 4-6 weeks: r(43) = -0.727, p ⩽ 0.001). However, visual assessment of scatterplots revealed a small, but substantial number of outliers. When focusing on these outlier patients, they showed clinically relevant changes between baseline and 6 weeks with the wish to hasten death changing in n = 9 (15% of n = 60) and the will to live changing in n = 11 (18.6% of n = 59). Interview data of three outlier cases illustrates unusual trajectories and possible factors which may influence them.

Conclusions: As they can co-exist in different possible combinations, a high wish to hasten death does not necessarily imply a low will to live and vice versa. Patients receiving palliative care can hold such seemingly opposing positions in mind as a form of coping when confronted with an existential threat of serious illness. Therefore, health professionals are encouraged to proactively engage patients in conversation about both phenomena.

Introduction: Timely identification of dying in motor neurone disease enables optimal care, yet we know that healthcare professionals can fail to recognise when death is approaching. Clinical factors help predict the end of life in other terminal conditions. Examining these principles in motor neurone disease would help guide more accurate recognition of this critical phase.

Aim: To examine and map out what is known about dying in patients with motor neurone disease, and the recognition of dying by healthcare professionals.

Design: A scoping review was conducted following the Arksey and O'Malley methodological framework.

Data sources: Four electronic databases (MEDLINE, Scopus, PsycINFO and CINAHL) and grey literature were searched on the 10th May 2023. Reference lists and citations were also reviewed.

Results: From 1512 articles, 13 studies were included. Dyspnoea, anxiety and pain were the most common symptoms associated with the dying phase. Worsening respiratory function, the development of specific new symptoms and deteriorating symptom control suggested approaching death. No studies reported changes in vital signs or biomarkers associated with dying. Barriers to the recognition of dying by healthcare professionals included a rapid and unpredictable terminal decline.

Conclusions: Dying in motor neurone disease is associated with patterns of symptoms and signs, however evidence is limited compared with other terminal conditions and requires further exploration. The characteristic sudden and unpredictable terminal decline is a key barrier to recognition of dying by healthcare professionals. Optimising advance care planning is one approach to navigate these complex, unpredictable clinical situations.