Dataset Information

Palliative care for cirrhosis: a UK survey of health professionals' perceptions, current practice and future needs.

ABSTRACT:

Objective

To determine the knowledge and practice patterns of a UK cohort of relevant healthcare professionals (HCPs) about delivering palliative care in cirrhosis, and to inform priorities for future research.

Design

An on-line questionnaire survey with closed and open responses.

Setting

HCPs identified from the mailing list of special interest groups in hepatology and gastroenterology (liver), general practice and specialist palliative care (SPC) across the UK.

Results

Of the 6181 potential contacts identified, 517 HCPs responded. Most believed a role exists for SPC in caring for people with cirrhosis, but many SPC HCPs felt ill prepared to provide good care to those facing death. Further training was needed in managing liver-related symptoms, symptom control and end of life issues. All HCP groups wished to increase community provision of palliative care support, but many general practitioners felt unable to manage advanced cirrhosis in the community. There were differences in the optimal trigger for SPC referral with liver HCPs less likely to refer at symptom deterioration. Prognostication, symptom management and service configuration were key areas identified for future research.

Conclusions

All who responded acknowledged the role of SPC in caring for those dying with cirrhosis and need for further training to improve confidence and enable joint working between SPC, general practice and liver teams. Low response rates make it difficult to generalise these findings, which require further validation.

SUBMITTER: Low J

PROVIDER: S-EPMC5369469 | biostudies-literature | 2016 Jan

REPOSITORIES: biostudies-literature

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Publications

Palliative care for cirrhosis: a UK survey of health professionals' perceptions, current practice and future needs.

Low Joseph J Vickerstaff Victoria V Davis Sarah S Bichard Julia J Greenslade Lynda L Hopkins Katherine K Marshall Aileen A Thorburn Douglas D Jones Louise L

Frontline gastroenterology 20150724 1

<h4>Objective</h4>To determine the knowledge and practice patterns of a UK cohort of relevant healthcare professionals (HCPs) about delivering palliative care in cirrhosis, and to inform priorities for future research.<h4>Design</h4>An on-line questionnaire survey with closed and open responses.<h4>Setting</h4>HCPs identified from the mailing list of special interest groups in hepatology and gastroenterology (liver), general practice and specialist palliative care (SPC) across the UK.<h4>Results ...[more]

PMID: 28839829

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Project description:BackgroundThe Emergency Department (ED) is not always the optimal place for people with palliative care needs but is the most common route for treatment when urgent care is sought. The aim of this study,''REasons for PalLIative Care Admissions (REPLICA)' was to explore the perspectives of ED healthcare professionals of hospital admission or discharge via ED for palliative care patients.MethodsThis is a sequential mixed methods study comprising (i) quantitative descriptive analysis of Hospital Episode Statistics (HES) of palliative care patients (code Z51.5) who were admitted through ED in a West Midlands Hospital and for the rest of England; (ii) in-depth semi-structured interviews with 17 ED staff which were analysed using thematic content analysis.ResultsOver the four years (2013-2017), 430,116 people admitted through ED were identified with a Z51.5 diagnosis code, 0.6% (n = 2736) of whom were from the West Midlands Hospital. The most common reasons for palliative care patients' admission to hospitals across England were for care of chronic kidney disease, cancers and urinary tract infections. Five themes were elicited from the qualitative analysis: (1) Providing palliative care in ED is challenging, due to factors including lack of training in palliative care and the unsuitable environment. (2) Patients go to ED due to challenges in community management such as inappropriate referrals and no care plan in place. (3) Health system influences admission and discharge decisions, including bed availability and being unable to set up community services out-of-hours. (4) Discussion with patient about treatment and end of life care needs to be outside of ED whilst the patient is still well enough to express their wishes. (5) Improving services for patients with palliative care needs. Recommendations include short training sessions for ED staff and accessing palliative care professionals 24/7.ConclusionsA large number of palliative care patients visit ED and are admitted to hospital for care; there is an urgent need to prevent patients attending the hospital through the establishment of a coordinated and dedicated service to support palliative care patients in the community.

Project description:BackgroundThere is a variation in dialysis withdrawal rates, but reasons for this variation across European countries are largely unknown. We therefore surveyed nephrologists' perceptions of factors concerning dialysis withdrawal and palliative care and explored relationships between these perceptions and reports of whether withdrawal actually occurred in practice.MethodsWe developed a 33-item electronic survey, disseminated via an email blast to all European Renal Association-European Dialysis and Transplant Association (ERA-EDTA) members. In our data analyses, we distinguished those respondents who reported occurrence from those reporting no dialysis withdrawal in their unit. With multilevel logistic regression, we investigated the association between respondents' characteristics and perceptions and whether they reported occurrence of dialysis withdrawal or not.ResultsFive hundred and twenty-eight nephrologists from 45 countries completed the questionnaire; 42% reported occurrence of withdrawal in their unit in the past year, and 56% perceived that stopping life-prolonging treatment in terminally ill patients was allowed. Few respondents reported presence in their unit of protocols on withdrawal decision making (7%) or palliative care (10%) or the common involvement of a geriatrician in withdrawal decisions (10%). The majority stated that palliative care had not been part of their core curriculum (74%) and that they had not recently attended continuous medical education sessions on this topic (73%). Respondents from Eastern and Southern Europe had a 42 and 40% lower probability, respectively, of reporting withdrawal compared with those from North European countries. Working in a public centre [odds ratio (OR), 2.41; 95% confidence interval (CI), 1.36-4.25] and respondents' perception that stopping life-prolonging treatment in terminally ill patients was allowed (OR, 1.96; 95% CI, 1.23-3.12), that withdrawal decisions were commonly shared between doctor and patient (OR, 1.97; 95% CI, 1.26-3.08) and that palliative care was reimbursed (OR, 1.81; 95% CI, 1.16-2.83) increased the odds of reporting occurrence of withdrawal.ConclusionReports of dialysis withdrawal occurrence varied between European countries. Occurrence reports were more likely if respondents worked in a public centre, if stopping life-prolonging treatments was perceived as allowed, if withdrawal decisions were considered shared between doctors and patients and if reimbursement of palliative care was believed to be in place. There is room for improvement regarding protocols on withdrawal and palliative care processes and regarding nephrologists' training and education on end-of-life care.

Dataset Information

Palliative care for cirrhosis: a UK survey of health professionals' perceptions, current practice and future needs.

Objective

Design

Setting

Results

Conclusions

Publications

Palliative care for cirrhosis: a UK survey of health professionals' perceptions, current practice and future needs.

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