Background:
Liver disease represents the third commonest cause of death in adults of working age and is associated with an extensive illness burden towards the end of life. Despite this, patients ...rarely receive palliative care and are unlikely to be involved in advance care planning discussions. Evidence addressing how existing services meet end-of-life needs, and exploring attitudes of patients and carers towards palliative care, is lacking.
Aim:
To explore the needs of patients and carers with liver disease towards the end of life, evaluate how existing services meet need, and examine patient and carer attitudes towards palliative care.
Design:
Qualitative study – semi-structured interviews analysed using thematic analysis.
Settings/participants:
A total of 17 participants (12 patients, 5 bereaved carers) recruited from University Hospitals Bristol.
Results:
Participants described escalating physical, psychological and social needs as liver disease progressed, including disabling symptoms, emotional distress and uncertainty, addiction, financial hardship and social isolation. End-of-life needs were incompatible with the healthcare services available to address them; these were heavily centred in secondary care, focussed on disease modification at the expense of symptom control and provided limited support after curative options were exhausted. Attitudes towards palliative care were mixed, however, participants valued opportunities to express future care preferences (particularly relating to avoidance of hospital admission towards the end of life) and an increased focus on symptomatic and logistical aspects of care.
Conclusion:
The needs of patients with liver disease and their carers are frequently incompatible with the healthcare services available to them towards the end of life. Novel strategies, which recognise the life-limiting nature of liver disease explicitly and improve coordination with community services, are required if end-of-life care is to improve.
Wissenschaft und Technologie waren zentrale Bestandteile kolonialer und imperialer Politiken. Sie waren Platzhalter für Modernisierung und Fortschritt innerhalb eurozentristischer ...Entwicklungsprogramme. Später wurden sie zur Zielscheibe der Kritik von post-development und postkolonialen Ansätzen. Während diese dazu neigten, indigenes und lokales Wissen zu romantisieren, glorifizieren aktuelle Entwicklungsinitiativen neue, globale Technologien und wissenschaftliche Experimente als die Lösung für Entwicklungsprobleme. Dieser Artikel geht diesen unterschiedlichen Bedeutungszuschreibungen von Wissenschaft und Technologie im entwicklungspolitischen Kontext nach. Er stellt (postkoloniale) Science and Technology Studies (STS) als eine Perspektive vor, die es ermöglicht, den Entwicklungsapparat kritisch zu hinterfragen, indem gezielt die Rolle von Wissenschaft und Technologie in der (Re-)Produktion von Logiken und Praktiken der Entwicklung(szusammenarbeit) beleuchtet werden. Postkoloniale STS können einen neuen Impuls für eine theoretisch inspirierte Entwicklungsgeographie jenseits bisher dominanter, binärer Sichtweisen sowohl von Technologie als auch von Entwicklung geben.
Enlightenment notions of science and technology have been crucial to imperial and colonial endeavors. They have come to stand for modernization and progress in a Eurocentric development agenda; later on, they have turned into the central objects of post-development and post-colonial critiques. While post-development approaches tend to romanticize indigenous and local knowledges, some of the most recent development initiatives return to a glorify (global) science and technology as the solution for development. This paper critically engages with these narratives about science and technology and introduces (postcolonial) science and technology studies (STS) as a perspective that challenges such binary ways of dealing with science and technology in development contexts. By doing so it contributes to recent debates about the role of science and technology for development and gives new inspiration for a theoretically inclined development geography.
The World Health Assembly recommends integration of palliative care into treatment of patients with any life-limiting condition, yet patients with non-malignant disease are less likely to receive ...specialist palliative care (SPC). This study compares SPC offered to patients with hepatocellular carcinoma (HCC) versus patients with chronic liver disease without HCC (CLD without HCC).
Patients who died from CLD or HCC over 5 years (2013-2017) in England were identified using a dataset linking national data on all hospital admissions (Hospital Episode Statistics - HES) with national mortality data from the Office for National Statistics (HES - ONS). The primary outcome was the proportion of patients who received inpatient SPC in their last year of life (LYOL). Secondary outcomes were (1) early inpatient SPC input and (2) the proportion dying in a hospice. The outcomes were compared between patients with HCC and CLD without HCC.
29 669 patients were identified, 8143 of whom had HCC. Patients with HCC were significantly more likely to receive inpatient SPC input-adjusted OR 3.74 (95% CI 3.52-3.97) and early inpatient SPC input-adjusted OR 7.26 (95% CI 6.38-8.25) and die in a hospice OR 8.23 (95% CI 7.33-9.24) than patients with CLD without HCC.
These data highlight the stark inequity in access to SPC services between patients with HCC and patients with CLD without HCC in England. Addressing these inequities will improve end-of-life care for patients with CLD.
Abstract Background The Improving Outcomes in Urological Cancers guidelines recommended centralisation of cystectomy services to improve outcomes for bladder cancer (BCa) patients. Objective To ...investigate trends in all-cause and cause-specific survival to see if there was an improvement in survival after centralisation was implemented. To analyse trends in the number of acute hospital trusts undertaking cystectomy. Design, setting, and participants We used routine data to capture information on radical cystectomy (RC) in BCa patients aged 20 yr and older between 1998 and 2010 ( n = 16 033). Outcome measurements and statistical analysis We calculated 30-d and 90-d mortality, and 30-d, 90-d, 1-yr, and 5-yr survival. The average number of RCs per trust was derived. Trends were identified using regression analysis. Results and limitations The 30-d crude mortality decreased from 5.2% to 2.1% ( p < 0.001) and 90-d crude mortality decreased from 10.3% to 5.1% ( p < 0.001). There was an increase in 30-d relative survival from 96% to 98% ( p < 0.001), in 90-d relative survival from 91% to 96% ( p < 0.001), in 1-yr relative survival from 71% to 80% ( p < 0.001), and in 5-yr relative survival from 49% to 56% (2004–2006 data; p < 0.001). The mean number of RCs performed by trusts in England increased from six to 24 ( p < 0.001). Smoking status and stage at diagnosis were not available. Conclusions Survival after RC has increased alongside decreases in short-term mortality. There is little evidence of a cohort effect. The trends in survival are linear and we conclude that the continued survival improvements are a result of a combination of service improvements that include service reconfiguration, improved surgical training, neoadjuvant chemotherapy, enhanced recovery principles, and continued improvements in perioperative care. Patient summary We analysed routinely collected hospital data. Outcomes for patients who undergo cystectomy have improved for all age groups. This is likely to be due to a combination of changes in practice.
Wissenschaft und Technologie waren zentrale Bestandteile kolonialer und imperialer Politiken. Sie waren Platzhalter für Modernisierung und Fortschritt innerhalb eurozentristischer ...Entwicklungsprogramme. Später wurden sie zur Zielscheibe der Kritik von post-development und postkolonialen Ansätzen. Während diese dazu neigten, indigenes und lokales Wissen zu romantisieren, glorifizieren aktuelle Entwicklungsinitiativen neue, globale Technologien und wissenschaftliche Experimente als die Lösung für Entwicklungsprobleme. Dieser Artikel geht diesen unterschiedlichen Bedeutungszuschreibungen von Wissenschaft und Technologie im entwicklungspolitischen Kontext nach. Er stellt (postkoloniale) Science and Technology Studies (STS) als eine Perspektive vor, die es ermöglicht, den Entwicklungsapparat kritisch zu hinterfragen, indem gezielt die Rolle von Wissenschaft und Technologie in der (Re-)Produktion von Logiken und Praktiken der Entwicklung(szusammenarbeit) beleuchtet werden. Postkoloniale STS können einen neuen Impuls für eine theoretisch inspirierte Entwicklungsgeographie jenseits bisher dominanter, binärer Sichtweisen sowohl von Technologie als auch von Entwicklung geben. Enlightenment notions of science and technology have been crucial to imperial and colonial endeavors. They have come to stand for modernization and progress in a Eurocentric development agenda; later on, they have turned into the central objects of post-development and post-colonial critiques. While post-development approaches tend to romanticize indigenous and local knowledges, some of the most recent development initiatives return to a glorify (global) science and technology as the solution for development. This paper critically engages with these narratives about science and technology and introduces (postcolonial) science and technology studies (STS) as a perspective that challenges such binary ways of dealing with science and technology in development contexts. By doing so it contributes to recent debates about the role of science and technology for development and gives new inspiration for a theoretically inclined development geography.
Good end-of-life care is essential to ensure dignity and comfort in death. To our knowledge, there has not been a national population-based study in England of community prescribing of all drugs used ...in end-of-life care for patients with cancer.
57 632 people who died from malignant cancer in their own home or in a care home in 2017 in England were included in this study. National routinely collected data were used to examine community prescriptions dispensed for drugs for symptom control and anticipatory prescribing by key sociodemographic factors in the last 4 months of life.
94% of people who died received drugs to control their symptoms and 65% received anticipatory prescribing. Prescribing increased for the symptom control drug group (53% to 75%) and the anticipatory prescribing group (4% to 52%) over the 4-month period to death.
Most individuals who died of cancer in their own home or a care home were dispensed drugs commonly used to control symptoms at the end of life, as recommended by best-practice guidance. Lower prescribing activity was found for those who died in a care home, highlighting a potential need for improved end-of-life service planning.
