End Stage Liver Disease Regional Audit Casenote Survey

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1. This questionnaire is an audit of clinical documentation of patients who have died of end stage liver disease. 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

2. Demographics Please complete the patient's demographic details. * 1. Patient s Specialist Palliative Care Service Group (SPCSG) * 2. Patient s SPCSG Location & Service * 3. Age * 4. Gender Female Male * 5. Patient s Place of Care Home Nursing Home Hospice Hospital 2

3. * 1. What is the documented cause of the patient's end stage liver disease? Alcoholic liver disease Alcoholic hepatitis Primary liver cancer Fatty liver disease (NAFLD / NASH) Viral liver disease Liver metastases Other chronic liver disease cause documented * 2. If documented what was the patient's Child-Pugh score? A B C t documented * 3. If documented, what was the patient's MELD score? 40 30-39 20-29 10-19 9 or less t documented * 4. Did this patient have evidence of hepatic encephalopathy e.g mood changes, disorientation, inappropriate behaviour, somnolence, confusion, asterixis, slurred speech, ataxia coma? t recorded Other (please comment) 3

4. * 1. If this patient had hepatic encephalopathy how was this managed? Rifaximin Lactulose Regular enemas Benzodiazepines Antipsychotics * 2. Was this patient at risk of life-threatening haemorrhage? t recorded 4

5. * 1. If the patient was at risk of life-threatening haemorrhage, how was this managed? Communication of risk of life-threatening haemorrhage. Anticipatory Midazolam prescribed. Dark towels placed in patient's room. * 2. Did this patient have an egfr of less than 30 ml/min per 1.73 m? 2 t recorded * 3. Was there documented evidence that the patient was recognised as likely to be dying? * 4. Which of the following symptoms were present in the patient's last 7 days of life? (Tick all that apply) Pain Nausea Dyspnoea Respiratory Tract Secretions Agitation symptoms recorded 5

* 5. What medication(s) were prescribed as needed (PRN) for pain? Paracetamol Ketorolac Nefopam Morphine Oxycodone Fentanyl Alfentanil Buprenorphine Hydromorphone medication(s) were prescribed as needed (PRN) for pain. * 6. What medication(s) were prescribed as needed (PRN) for nausea & vomiting? Metoclopramide Domperidone Cyclizine Levomepromazine Haloperidol Ondansetron medication(s) were prescribed as needed (PRN) for nausea & vomiting * 7. What medication(s) were prescribed as needed (PRN) for dyspnoea? Morphine Oxycodone Midazolam Lorazepam medication(s) were prescribed as needed (PRN) for dyspnoea 6

* 8. What medication(s) were prescribed as needed (PRN) for respiratory tract secretions? Hyoscine hydrobromide Hyoscine butylbromide Glycopyrronium Octreotide medication(s) were prescribed as needed (PRN) for respiratory tract secretions * 9. What medication(s) were prescribed as needed (PRN) for terminal agitation? Midazolam Lorazepam sublingual Levomepromazine Phenobarbital Haloperidol medication(s) were prescribed as needed (PRN) for terminal agitation? * 10. Was there a documented Advance Care Plan in the case records? (This would include an Advance Care Plan Summary document and/or Advance Decision to Refuse Treatment document) * 11. Was there a valid DNACPR documentation in place? * 12. Was a member of the specialist palliative care team involved in this patient's care in the last hours to days of his/her life? Don't know (not documented in case notes) * 13. How long before this patient's death was the first contact made with the specialist palliative care team? Less than 1 day 1-2 days 3-7 days 8 days or more The specialist palliative care team was not involved in this patient's care 7

6. 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. If you wish to submit more examples please click on the Done button and enter this address again: https://www.surveymonkey.co.uk/r/3yvd3vj 8