scholarly journals Of apples and oranges: Lessons learned from the preparation of research protocols for systematic reviews exploring the effectiveness of Specialist Palliative Care

2016 ◽  
Vol 15 (1) ◽  
Author(s):  
Jan Gaertner ◽  
Waldemar Siemens ◽  
Barbara A. Daveson ◽  
Melinda Smith ◽  
Catherine J. Evans ◽  
...  
2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Anne M. Finucane ◽  
Connie Swenson ◽  
John I. MacArtney ◽  
Rachel Perry ◽  
Hazel Lamberton ◽  
...  

Abstract Background Specialist palliative care (SPC) providers tend to use the term ‘complex’ to refer to the needs of patients who require SPC. However, little is known about complex needs on first referral to a SPC service. We examined which needs are present and sought the perspectives of healthcare professionals on the complexity of need on referral to a hospice service. Methods Multi-site sequential explanatory mixed method study consisting of a case-note review and focus groups with healthcare professionals in four UK hospices. Results Documentation relating to 239 new patient referrals to hospice was reviewed; and focus groups involving 22 healthcare professionals conducted. Most patients had two or more needs documented on referral (96%); and needs were recorded across two or more domains for 62%. Physical needs were recorded for 91% of patients; psychological needs were recorded for 59%. Spiritual needs were rarely documented. Referral forms were considered limited for capturing complex needs. Referrals were perceived to be influenced by the experience and confidence of the referrer and the local resource available to meet palliative care needs directly. Conclusions Complexity was hard to detail or to objectively define on referral documentation alone. It appeared to be a term used to describe patients whom primary or secondary care providers felt needed SPC knowledge or support to meet their needs. Hospices need to provide greater clarity regarding who should be referred, when and for what purpose. Education and training in palliative care for primary care nurses and doctors and hospital clinicians could reduce the need for referral and help ensure that hospices are available to those most in need of SPC input.


2021 ◽  
Author(s):  
Kirsty Thorpe ◽  
Jamie McKnight ◽  
Hildegard Kolb ◽  
Claire McCullough ◽  
Tim Morgan

2021 ◽  
Vol 50 (Supplement_1) ◽  
pp. i12-i42
Author(s):  
D Hibbert

Abstract   NACEL is a national comparative audit of the quality and outcomes of care experienced by the dying person and those important to them during the final admission in acute and community hospitals in England and Wales. Mental health inpatient providers participated in the first round but excluded from the second round. NACEL round two, undertaken during 2019/20, comprised: Data was collected between June and October 2019. 175 trusts in England and 8 Welsh organisations took part in at least one element of NACEL (97% of eligible organisations). Key findings include Recognising the possibility of imminent death: The possibility that the patient may die was documented in 88% of cases. The median time from recognition of dying to death was 41 hours (36 hours in the first round). Individual plan of care: 71% of patients, where it had been recognised that the patient was dying (Category 1 deaths), had an individualised end of life care plan. Of the patients who did not have an individualised plan of care, in 45% of these cases, the time from recognition of dying to death was more than 24 hours. Families’ and others’ experience of care: 80% of Quality Survey respondents rated the quality of care delivered to the patient as outstanding/excellent/good and 75% rated the care provided to families/others as outstanding/excellent/good. However, one-fifth of responses reported that the families’/others’ needs were not asked about. Individual plan of care: 80% of Quality Survey respondents believed that hospital was the “right” place to die; however, 20% reported there was a lack of peace and privacy. Workforce Most hospitals (99%) have access to a specialist palliative care service. 36% of hospitals have a face-to-face specialist palliative care service (doctor and/or nurse) available 8 hours a day, 7 days a week. NACEL round three will start in 2021.


BMJ Open ◽  
2021 ◽  
Vol 11 (3) ◽  
pp. e044196
Author(s):  
Madalene Earp ◽  
Pin Cai ◽  
Andrew Fong ◽  
Kelly Blacklaws ◽  
Truong-Minh Pham ◽  
...  

ObjectiveFor eight chronic diseases, evaluate the association of specialist palliative care (PC) exposure and timing with hospital-based acute care in the last 30 days of life.DesignRetrospective cohort study using administrative data.SettingAlberta, Canada between 2007 and 2016.Participants47 169 adults deceased from: (1) cancer, (2) heart disease, (3) dementia, (4) stroke, (5) chronic lower respiratory disease (chronic obstructive pulmonary disease (COPD)), (6) liver disease, (7) neurodegenerative disease and (8) renovascular disease.Main outcome measuresThe proportion of decedents who experienced high hospital-based acute care in the last 30 days of life, indicated by ≥two emergency department (ED) visit, ≥two hospital admissions,≥14 days of hospitalisation, any intensive care unit (ICU) admission, or death in hospital. Relative risk (RR) and risk difference (RD) of hospital-based acute care given early specialist PC exposure (≥90 days before death), adjusted for patient characteristics.ResultsIn an analysis of all decedents, early specialist PC exposure was associated with a 32% reduction in risk of any hospital-based acute care as compared with those with no PC exposure (RR 0.69, 95% CI 0.66 to 0.71; RD 0.16, 95% CI 0.15 to 0.17). The association was strongest in cancer-specific analyses (RR 0.53, 95% CI 0.50 to 0.55; RD 0.31, 95% CI 0.29 to 0.33) and renal disease-specific analyses (RR 0.60, 95% CI 0.43 to 0.84; RD 0.22, 95% CI 0.11 to 0.34), but a~25% risk reduction was observed for each of heart disease, COPD, neurodegenerative diseases and stroke. Early specialist PC exposure was associated with reducing risk of four out of five individual indicators of high hospital-based acute care in the last 30 days of life, including ≥two ED visit,≥two hospital admission, any ICU admission and death in hospital.ConclusionsEarly specialist PC exposure reduced the risk of hospital-based acute care in the last 30 days of life for all chronic disease groups except dementia.


Author(s):  
Lauren Russo ◽  
Karen Willis ◽  
Natasha Smallwood

Objectives: Interstitial lung disease (ILD) is a debilitating and life-limiting condition, requiring multi-disciplinary care. While guidelines recommend early specialist palliative care referral to improve symptoms and quality of life, few patients access such care towards the end-of-life. This study aimed to explore clinicians’ perspectives regarding specialist palliative care and opioids to understand barriers to optimal care and guide clinical practice improvement initiatives. Methods: A cross-sectional, exploratory, qualitative study was undertaken with Australian respiratory clinicians caring for people with ILD (n = 17). In-depth, semi-structured interviews were audio-recorded, transcribed verbatim and coded. Thematic analysis was undertaken to extrapolate recurring ideas from the data. Results: Four themes were identified: 1) understanding how to improve patient care and support, 2) the need to dispel stigmatized beliefs and misconceptions, 3) the importance of trusted relationships and good communication and 4) the challenges of navigating the health-care system. Participants discussed the need to implement early specialist palliative care and symptom palliation to alleviate symptoms, provide emotional support and augment quality of life. Participants described challenges accessing palliative care and opioids due to stigmatized beliefs amongst patients and clinicians and difficulties navigating the health-care system. Trusted therapeutic relationships with patients and strong inter-disciplinary partnerships with collaborative education and communication were perceived to improve patients’ access to symptom palliation. Conclusion: Specialist palliative care and opioids were believed to improve patients’ quality of life, however, many barriers can make accessing such care challenging. To address these issues, multi-disciplinary collaboration, high-quality communication and trusted therapeutic relationships are crucial throughout the ILD illness journey.


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