scholarly journals Developing Priorities for Palliative Care Research in Advanced Liver Disease: A Multidisciplinary Approach

2021 ◽  
Author(s):  
Arpan A. Patel ◽  
Christopher Woodrell ◽  
Nneka N. Ufere ◽  
Lissi Hansen ◽  
Puneeta Tandon ◽  
...  
Keyword(s):  
Palliative Care ◽  
Liver Disease ◽  
Multidisciplinary Approach ◽  
Advanced Liver Disease ◽  
Care Research

P1274 : Supportive and palliative care in advanced liver disease: Patients’ needs and priorities

2015 ◽  
Vol 62 ◽  
pp. S836-S837
Author(s):  
B.M. Kimbell ◽  
M. Kendall ◽  
K. Boyd ◽  
S.A. Murray
Keyword(s):  
Palliative Care ◽  
Liver Disease ◽  
Advanced Liver Disease

What do we know about patients’ perspectives and expectations relating to palliative and end-of-life care in advanced liver disease? A systematic review of qualitative literature using ENTREQ guidelines

2021 ◽  
pp. bmjspcare-2021-003057
Author(s):  
Debasish Das ◽  
Mafas Ali ◽  
Ithsham Ali Hussain ◽  
Josh Thomas Nigel Ingram ◽  
Rachel Sarah Johnstone ◽  
...  
Keyword(s):  
Systematic Review ◽  
Palliative Care ◽  
Liver Disease ◽  
End Of Life ◽  
End Of Life Care ◽  
Community Support ◽  
Life Care ◽  
Advanced Liver Disease ◽  
End Stage Liver Disease ◽  
End Stage

BackgroundLiver disease, a major cause of death worldwide, affects younger people compared with other major causes of death. Palliative and end-of-life care for these patients are often overlooked. Guidelines are emerging on what good end-of-life care in liver disease should look like, but there is a dearth of research into patients’ perspectives even though they are most affected by these guidelines.AimTo explore current knowledge and understanding of patients’ lived experiences, perspectives and expectations in relation to palliative and end-of-life care in advanced liver disease.DesignSystematic review with thematic synthesis complying to the enhancing transparency in reporting the synthesis of qualitative research (ENTREQ) statement.Setting and participantsDatabase searches (Ovid Medline, 1946–2021 and Web of Science, 1970–2021) to identify qualitative studies exploring patients’ perspectives of palliative and end-of-life care in advanced liver disease.FindingsOnly eight articles met all criteria. Themes demonstrated repeated hospital admissions towards the end of life, lack of coordinated care in community and barriers in discussion about palliative care in end-stage liver disease due to lack of confidence among professionals and a negative view about palliative care among patients and carers. Emotional, financial and disability-related needs of patients and their carers are often neglected.ConclusionThere is a dearth of studies exploring patients’ perspectives about care in advanced liver disease relating to palliative and end-of-life care. Lack of coordinated community support and honest conversations around palliative care leads to reduced quality of life. More primary research from diverse population is needed to improve palliative care and end-of-life care in end-stage liver disease.

Emerging Role of Palliative Care in Patients with Advanced Liver Disease

2019 ◽  
Vol 40 (02) ◽  
pp. 163-170
Author(s):  
Roberta I. Jordan ◽  
Puneeta Tandon
Keyword(s):  
Palliative Care ◽  
Liver Disease ◽  
Symptom Burden ◽  
Models Of Care ◽  
Care Needs ◽  
Advanced Liver Disease ◽  
Mortality And Morbidity ◽  
Level Of Involvement ◽  
Current State ◽  
Potential Benefits

AbstractAdvanced liver disease is increasing in mortality and morbidity worldwide, as a result of growing alcohol consumption, obesity, and viral hepatitis infection. Alongside efforts to reduce these factors, it is clear that we must identify the considerable palliative care needs of these patients in order to improve quality of life and reduce symptom burden. Our review focuses on the current state of palliative and end-of-life care for patients with advanced liver disease, the significant associated symptom burden in this disease group, identified level of involvement and potential benefits of specialist palliative care, as well as possible barriers to accessing this care. We demonstrate that although palliative care involvement varies considerably worldwide, there is much opportunity for improvement. Further research is needed to determine new interventions and models of care that may improve access for patients with liver disease, including an expansion of providers comfortable with generalist palliative care.

scholarly journals Palliative care for people with advanced liver disease: A feasibility trial of a supportive care liver nurse specialist

2018 ◽  
Vol 32 (5) ◽  
pp. 919-929 ◽  
Author(s):  
Barbara Kimbell ◽  
Scott A Murray ◽  
Heidi Byrne ◽  
Andrea Baird ◽  
Peter C Hayes ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Liver Disease ◽  
Supportive Care ◽  
Feasibility Trial ◽  
Decompensated Cirrhosis ◽  
Nurse Specialist ◽  
Care Planning ◽  
Advanced Liver Disease

Background: Liver disease is an increasing cause of death worldwide but palliative care is largely absent for these patients. Aim: We conducted a feasibility trial of a complex intervention delivered by a supportive care liver nurse specialist to improve care coordination, anticipatory care planning and quality of life for people with advanced liver disease and their carers. Design: Patients received a 6-month intervention (alongside usual care) from a specially trained liver nurse specialist. The nurse supported patients/carers to live as well as possible with the condition and acted as a resource to facilitate care by community professionals. A mixed-method evaluation was conducted. Case note analysis and questionnaires examined resource use, care planning processes and quality-of-life outcomes over time. Interviews with patients, carers and professionals explored acceptability, effectiveness, feasibility and the intervention. Setting/participants: Patients with advanced liver disease who had an unplanned hospital admission with decompensated cirrhosis were recruited from an inpatient liver unit. The intervention was delivered to patients once they had returned home. Results: We recruited 47 patients, 27 family carers and 13 case-linked professionals. The intervention was acceptable to all participants. They welcomed access to additional expert advice, support and continuity of care. The intervention greatly increased the number of electronic summary care plans shared by primary care and hospitals. The Palliative care Outcome Scale and EuroQol-5D-5L questionnaire were suitable outcome measurement tools. Conclusion: This nurse-led intervention proved acceptable and feasible. We have refined the recruitment processes and outcome measures for a future randomised controlled trial.

Palliative Care and Resource Utilization at the End-of-Life in Advanced Liver Disease

2016 ◽  
Vol 111 ◽  
pp. S395
Author(s):  
Arpan Patel ◽  
Anne Walling ◽  
Folasade May ◽  
Sammy Saab ◽  
Neil Wenger
Keyword(s):  
Palliative Care ◽  
Liver Disease ◽  
End Of Life ◽  
Resource Utilization ◽  
Advanced Liver Disease
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