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Supportive care in advanced cirrhosis — Making the case for collaboration

This article discusses the need for collaboration in providing supportive care for patients with advanced cirrhosis, highlighting the barriers to palliative care and challenges in its provision.

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Supportive care in advanced cirrhosis — Making the case for collaboration

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  1. Supportive care in advanced cirrhosis —Making the case for collaboration Dr Hazel Woodland Clinical Research Fellow in Hepatology

  2. What to cover? • Liver disease in the UK • What is advanced chronic liver disease • Prognosis • Barriers to palliative care • Challenges of providing palliative care

  3. “Drink is, at its dark, pickled heart, a sepia pessimist. It draws curtains, pulls up the counterpane. It smothers and softens and smoothes. The bliss of drinking is that it softens and smooths. The bliss of drink is that it's a small death. The difference between you and us, you civilian amateur hobbyist drinkers and us professional, committed indentured alcoholics is that you drink for the lightness, we drink for the darkness. You want to feel good, we want to stop feeling so bad. All addictions become not about nirvana but maintenance. Not reaching for the stars but fixing the roof.” AA Gill 2016, Pour Me 

  4. “Sometimes, drunk, I ruminate on the state of my liver, and think of all the cirrhotics I have watched turn yellow and die. They either bleed out, raving, coughing up and drowning in blood from ruptured oesophageal veins, or, in coma, they slip away, slip blissfully away down the yellow-brick ammonia-scented road to oblivion.”  Dr Samuel Shem 1978, The House of God

  5. Liver disease – some stats • Since 1970 mortality risen by ~ 400% • Alcohol, obesity and viral hepatitis main causes in UK • 3rd commonest cause of death in adults of WORKING AGE • ~ 12% of deaths in men 40 to 49 years • Disease of deprivation

  6. The Lancet Liver Commission 2014

  7. Chronic liver disease

  8. What does CLD look like?

  9. Assessing Prognosis: Child-Pugh • Used widely to assess prognosis • Not usually used to trigger palliative care discussions • Variables: albumin, bilirubin, prothrombin time, ascites, encephalopathy

  10. Assessing prognosis Bristol Screening Tool

  11. Barriers to Palliative Care Patient Disease Physician

  12. Questionnaire Survey of UK Hepatologists 21.8 % 48.7% 51.7 % Hudson et al, BASL 2016 unpublished data

  13. Challenges Guilt Capacity Substance misuse Finances Metabolism of drugs Young patients Symptom burden Social support Literacy Stigma Homeless

  14. What to do about it?

  15. Outline • Gauging unmet need – local experience • Integrating earlier palliative care – feasibility study

  16. Local Experience

  17. The Final 24 Hours Discussion with family. DNACPR form signed A&E PC: chest/abdominal pain Referred to surgeons ITU consultant “multiple organ failure. Physically frail. Prognosis poor. All active HDU measures should be pursued, however ITU admission not in pt’s interest.” MHDU consultant: “continues to deteriorate. Ask family to attend urgently” Medical Consultant (diabetes) post-take “Very unwell – refer to medical HDU” Medical registrar: “Monitored asystolic arrest. Patient dead” Medical registrar CT: no perforation. Care taken over B chest x-ray B B B B chest x-ray B arterial line B chest x-ray central line Medical SHO Clerk-in “frail and unwell” CT scan Medical registrar: “complex tachycardia on monitoring. I suspect that this means the point of terminal decline, amiodarone seems futile but won’t harm the patient. D/W family: likely dying Plan: amiodarone/keep comfortable” MHDU registrar “Drowsy. Unable to answer questions. Fatigued.” Plan: ITU r/v, nasal high flow O2, central line, arterial line Surgical CT2 ?perforation CT abdomen requested Gastroenterology consultant “main issue is sepsis. Possible UGIB. OGD currently hazardous”

  18. Multi-site feasibility studyIntegrating Palliative Care into the Management of Patients with End Stage Liver Disease

  19. Aims of study • To assess feasibility of incorporating early supportive care into ongoing active management of patients with advanced CLD • To assess impact of early involvement of palliative care specialists on patients’ symptoms, mood and quality of life • To assess acceptability of early supportive care input to patients and their carers • To create an opportunity for knowledge and skill sharing between specialists in hepatology and palliative care

  20. Inclusion criteria • Diagnosis of cirrhosis (any aetiology) with refractory ascites or • More than one admission to hospital with episodes of decompensated liver disease (variceal bleed, jaundice, ascites, reversible encephalopathy) in the preceding year and • Able to provide fully informed written consent to participate in research

  21. Exclusion criteria • Lack of capacity, inability or refusal to provide informed written consent to participate in research • Diagnosis of hepatocellular carcinoma or any other malignancy • Hepatic encephalopathy of grade 2 or above (West-Haven criteria)

  22. Intervention • 1 hr joint consultation with Hepatologist/Gastroenterologist and a Palliative Medicine Consultant • Consultation in a private room • Patient asked to complete: • Hospital Anxiety and Depression Scale (HADS) • Integrated Palliative care Outcome Score (IPOS) • Carer asked to fill out Carer Experience Questionnaire • Consultation template • Patients offered written information on advance care planning at time of consultation, if appropriate

  23. Recruitment • Patients identified by hepatology/gastroenterology team caring for them (inpatient or outpatient) • Information leaflet given • Encouraged to invite carer • Inpatients: verbal consent sought after 2 days • Outpatients: verbal consent is obtained for telephone contact after 1 week

  24. Follow-up • Post consultation letter with support details • Letter summarising consultation will be sent to GP/usual gastroenterologists • Ongoing palliative care input arranged if needed • Follow up HADS and IPOS after 2-4 months • Carers again asked to fill out the carer experience questionnaire

  25. Progress • Recruitment • Reflections from joint consultations • Recognition of mutual benefit

  26. Summary • Optimal end stage liver disease management: • Recognition of deterioration and triggered by gastro/hepatologists • …who open up conversations • Involving patients and carers • With parallel planning • And transmitting important information to key people • Uncertainty may make this difficult… • …but shouldn’t be a reason not to do it • There is value to specialist palliative care expertise in some situations

  27. Discussion Points • Whose role is it anyway? • The MDT attender – is this unsustainable? Or invaluable?

  28. References (1) • Patel, A.A., Walling, A.M., May, F.P. et al. Palliative care and healthcare utilization for patients with end stage liver disease at • end of life. Clin Gastroenterol Hepatol 2017; 15:1612-1619 • Leon, D.A., McCambridge, J. Liver cirrhosis mortality rates in Britain from 1950 to 2002: an analysis of routine data. Lancet 2006; 367: 52-56 • Measuring the Units: A Review of Patients who Died with Alcohol Related Liver Disease. NCEPOD 2013 https://www.ncepod.org.uk/2013report1/downloads/MeasuringTheUnits_FullReport.pdf last accessed 11/11/2018 • National Survey of Bereaved People (VOICES) England, 2015: https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/healthcaresystem/bulletins/nationalsurveyofbereavedpeoplevoices/england2015 last accessed 10/11/2018 • British Association for the Study of the Liver and British Society of Gastroenterology. A time to act: improving liver health and outcomes in liver disease. The National Plan for Liver Services UK, 2009 • NCEPOD. “Measuring the Units”-a review of patients who died with alcoholic related liver disease. National Confidential Enquiry into Patient Outcome and Death (UK); 2013:1–25 • ISD SMR01, 11 June 2007 • Hudson BE, Ameneshoa K, Gopfert A, et al Integration of palliative and supportive care in the management of advanced liver disease: development and evaluation of a prognostic screening tool and supportive care intervention Frontline Gastroenterology 2017;8:45-52 • The costs of alcohol use and misuse in Scotland, Scottish Government 2008

  29. References (2) • Kimbell, B., Murray, S., Byrne, H., Baird, A., Hayes, P., MacGilchrist, A., Finucane, A., Brookes-Young, P., O'Carroll, R., Weir, C., Kendall, M. & Boyd, K. 8 Mar 2018 In : Palliative Medicine. p. 1-11 Palliative care for people with advanced liver disease: a feasibility trial of a supportive care liver nurse specialist • Kimbell, B, Boyd, K, Kendall, M, Iredale, J & Murray, SA 2015, Managing uncertainty in advanced liver disease: a qualitative, multiperspective, serial interview study BMJ Open, vol. 5, no. 11, e009241. DOI: 10.1136/bmjopen-2015-009241 • Kimbell, B, Kendall, M, Boyd, K & Murray, S 2015, 'Supportive and palliative care in advanced liver disease: patients' needs and priorities' Journal of Hepatology, vol. 62, no. Suppl_2. • New Light on Adult Literacy and Numeracy in Scotland. Scottish Government, 2008 • Protosek J, Curry M, Buss M. Integration of Palliative Care in End-Stage Liver Disease and Liver Transplantation. J Pall Med 2014: 17(11) 1271-1277 • Low J, Vickerstaff V, Davis S et al. Palliative care for cirrhosis: a UK survey of health professionals’ perceptions, current practice and future needs

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