This survey aims to look at individual practice and can be completed by any healthcare professional. If you have any questions about how this form should be completed please contact Dr Grace Ting (ghlting@doctors.net.uk) or Dr Andrew Khodabukus (andrew.khodabukus@nhs.net) Thank you. 1
* 1. Your Profession * 2. Your Location & Service * 3. In which healthcare setting do you MAINLY work in? (Please select only 1 option) Specialist Palliative Care - Community Specialist Palliative Care - Hospice Specialist Palliative Care - Hospital Primary Care Hepatology and Gastroenterology Critical Care Acute Medicine (Emergency Department / Accidents and Emergencies Department / Medical Assessment Unit / Urgent Care) 2
* 4. Select the top 3 common reasons which would prompt your referral of a patient with end stage liver disease to specialist palliative care (Please select only 3) Complex symptom control End of life care Hospice admission required Advance care planning Family support Advice on ongoing management of recurrent ascites * 5. Which prognostic indicator for assessing liver disease do you ROUTINELY use Child-Pugh MELD UKELD I do not routinely use a liver prognostic score Other /Comments (please specify) * 6. For the following scenarios, please select case(s) you consider specialist palliative care input would be appropriate. (Please tick all that apply) 56 year old male. Compensated Childs A Non-Alcoholic Steatohepatitis (NASH) cirrhosis. Seen 6 monthly in stable cirrhosis clinic. 47 year old woman. Primary biliary cirrhosis - UK End-stage Liver Disease (UKELD) score of 52. Listed for transplantation. 78 year old man. NASH cirrhosis with diuretic resistant ascites and renal impairment. 2 weekly outpatient paracentesis. 67 year old man with decompensated Childs B cirrhosis starting direct acting antiviral therapy for chronic hepatitis C virus infection. 37 year old woman. Alcohol dependency. Being discharged following 3 week admission for severe alcoholic hepatitis (first presentation) 52 year old man of no fixed abode. Ongoing addiction issues with alcohol and drug use. Recurrent A&E attendances. Child C cirrhosis with jaundice, ascites and grade 1 encephalopathy. 64 year old man. Hepatocellular carcinoma. Childs A cirrhosis. Delisted for transplantation as tumour now outside criteria for transplant list. Involvement of specialist palliative care is not appropriate in any of the above cases. * 7. What role do you think specialist palliative care has in the management of patients with end stage liver disease? 3
* 8. How confident are you in your knowledge and skills in looking after patients with end stage liver disease? (Please rate on a scale of 0 to 10; 0 = Not confident at all, 10 = Very confident) 0 = Not confident at all 5 = Neutral 10 = Very confident * 9. What training (if any) do you feel would improve your skills and knowledge in caring for patients with end stage liver disease? (Please rank in order of priority; 1 = most important, 7 = least important) Pharmacology of drugs used in end stage liver disease. Management of recurrent ascites. Management of hepatic encepalopathy Management of hepatorenal syndrome. Prevention and management of life-threatening haemorrhage. Social care and family support mechanisms. Advance care planning guidance * 10. Which strong opioid would be your first choice for managing pain in patients with end stage liver disease at the end of life with a preserved renal function? Morphine Oxycodone Hydromorphone Fentanyl Alfentanil * 11. Which strong opioid would be your first choice for managing pain in patients with end stage liver disease at the end of life with an impaired renal function? Morphine Oxycodone Hydromorphone Fentanyl Alfentanil 4
* 12. Which antiemetic would be your first choice for managing nausea and vomiting in patients with end stage liver disease at the end of life? Cyclizine Metoclopramide Levomepromazine Ondansetron Haloperidol * 13. Which medication would be your first choice for agitation in patients with end stage liver disease at the end of life? Midazolam Lorazepam Haloperidol Levomepromazine Phenobarbital * 14. Which medication would be your first choice for managing respiratory tract secretions in patients with end stage liver disease at the end of life? Hyoscine hydrobromide Hyoscine butylbromide Glycopyrronium * 15. What is your laxative of choice when managing hepatic encephalopathy? Laxido Senna Lactulose Docusate sodium Picolax Bisacodyl Enemas 5
* 16. How confident are you in managing life-threatening haemorrhage in end stage liver disease? (Please rate on a scale of 0 to 10; 0 = Not confident at all, 10 = Very confident) 0 = Not confident at all 5 = Neutral 10 = Very confident * 17. What do you find most challenging when managing patients with end stage liver disease in their last hours to days of life? (Please rank in order of 1 = most challenging, 10 = least challenging) Pain Agitation Delirium Recurrent ascites Pruritus Hepatic encephalopathy Haemorrhage Breathlessness Nausea / vomiting Respiratory tract secretions 6
This survey is now complete. Thank you for completing the survey. The results of this survey will be presented at the Regional Audit Meeting on 18th January 2018 at Marie Curie Hospice Liverpool. Click DONE to submit. 7