Palliative services getting involved: When is the right time? What are the barriers?

Palliative services getting involved: When is the right time? What are the barriers? Learning from the NHS report Getting it Right: Improving End of Life Care for liver Disease (2013) Lynda Greenslade Lead Nurse Specialist Practice Hepatology Royal Free London 19 th January 2018 Aims and Objectives Earlier identification of those with end stage liver disease Barriers to effective end of life care Case Study Models of good practice Solutions and future plans for improving care Burden of liver disease Liver disease is the third biggest cause of premature mortality in the UK Lancet Commission (2014) Is increasing - 25% increase in liver deaths between 2001 2009 (National End of Life Care Intelligence Network 2012) More than 1 in 10 deaths of people in their 40s is from liver disease Changing Creating new problems Challenging us to look for new solutions in providing best practice care for those with end stage liver disease Burden of liver disease Burden of liver disease In the UK liver disease causes approximately 2% of overall deaths Itis the third most common cause of premature death and threatening to overtake deaths from IHD. While new treatments for HCV has seen a decrease in deaths and need for liver transplantation (OLT) there has been an increase in NAFLD and NASH developing end stage liver disease and the need for (OLT). Identifying which patient with decompensating liver disease who will die remains difficult we all know patients who have survived several life threatening admissions and gone home. Care is often poor and patch across the UK More work is needed to understand how end of life care for people with cirrhosis can be managed well. New models of care have been proposed 1

Fluctuating disease trajectory "Voices" survey 2012 National survey of bereaved people, asking about experiences at the end of their relatives life Where liver disease was mentioned (367 responses) carers were: Less likely to rate the overall quality of care as outstanding Less likely to rate the quality of care by GPs as excellent More likely to rate their care as poor. More likely to rate the overall quality of care as poor More likely to rate the co-ordination of care as not working well Liver Disease Many patients don t have contact with GPs Some patients die at their first decompensation Some prediction tools used in secondary care only look at eligibility for liver transplant and life expectancy i.e. MELD The events around decompensation are critical to identifying the patients changing prognosis There is a ongoing pattern of admissions but with no continuity of care or follow up. There is poor awareness of liver disease and its consequence at end of life Getting it Right: Improving End of Life care with Liver Disease Commissioned through Martin Lombard the then Liver Czar. Complexity of these patients mean than more die in hospital than other with other diseases Lifestyle and cultural barriers Stigma Alcohol related liver disease and Non-alcoholic fatty liver disease Lack of public awareness that liver disease is commonly fatal Patient can have ongoing issues with addiction and mental health issues Many hospitals lack specialists in hepatology Inconsistent access to out of hours specialist experience Report Sets out an agenda for providing a seamless integrated high-quality for patients with advanced live disease to manage symptoms and support early identification and communication about advance care planning across healthcare settings form periods of active intervention to care in the last days of life 2

End of life care in liver disease: challenges Recognition of need How to identify patients at appropriate time Barriers to access to services Age Social deprivation Continued alcohol / substance use Disease course marked by sudden or profound deterioration Resources Not all palliative care services see patients without cancer Barriers Agreement with HCPs that the patient is entering an end of life phase Communication between: Medical teams Nurses and other HCPs Patients and their teams often seen by different medical team to their own consultant if in hospital Patients and their families HCP s and the families Community palliative care and HCPs Barriers Using the right language often medicalised and many patients and their families don t understand what cirrhosis and its liver complications are. Need for earlier education, patient information when patients first present with liver cirrhosis so know what might happen in future. Complaints about care for liver patients often are around lack of information about complications particularly hepatic encephalopathy Case Study 40yr old man with first decompensation with alcoholic hepatitis and underlying cirrhosis Treated for Alch hep with steroids responded slowly Ascites treated with paracentesis x 2 in hospital and on spironolactone on discharge Had an OGD varices seen and banded. Discharged home 3 weeks late in AE at local hospital died with 24hrs with Ascites and HE. Partner complained that she had had no information about how he might deteriorate and what HE was and how to recognise and manage it. Investigation of the complaint showed that all the clinical care was appropriate BUT lack of communication poor Royal Free Project with Marie Curie UCL Research Team National interest in improving EOL care in liver disease Scoping exercise at RFH 66% referred to p/c but in last few days of life Research collaboration UCL Marie Curie Palliative Care Department Ongoing project looking at our care at end of life Looking for a different intervention Methodology Aim: To identify how EOL care could be improved in ESLD to reduce hospital admissions. Objective : To explore clinical symptoms + service use in last 12 months of life. To understand the views of HP s + users ESLD detailed case note review completed 30 patients purposive sample over 18mths: diagnosis, age, gender Completed now: - Economic analysis - cost per patient admission - Focus groups with patients and HCPs - GP interviews + user interviews 3

Case History 68yr old male with known alcohol related liver disease but abstinent for 8 months Referred from another hospital for liver transplant assessment Had type 2 diabetes mellitus Main problems On-going reversal of sleep / day pattern due to HE At times more drowsy and confused due to HE Regular paracentesis Saw 3 different consultants at our trust Marie Curie Palliative Care Research Department Case review EOL care findings in RFH Transplant assessment Conversations about prognosis limited - 53% 63% had encephalopathy no plans for future care Dying phase difficult to identify 70% referred to p/c - late in last 3-5 days 17-19% patients die on the waiting list Who should have the end of life converstion with them? Referring hospital Transplant centre Problems Tensions for hepatologists Many want to treat to the bitter end just in case there is recovery About 18% of patients on the Transplant waiting list will die and once off the list they die within 30-45days When should we refer to palliative care? Do we refer? Many find it difficult to speak to their patients and to acknowledge patients deterioration Some feel they have had the conversation but not recorded in OPC letters to GP or referring hospital. Lack of a pathway that includes continued treatment with the acknowledgement that supportive treatment will continue. Marie Curie Palliative Care Research Department Qualitative findings - admissions Patients have a high burden of disease and limited services exist to treat them the quality of life of patients is very poor (Hepatologist) The uncertain trajectory + liver s ability to recover leads to active treatment The treatment emphasis in liver disease is recovery.we don t think about the patients perspective or their quality of life (Hepatologist) 4

Marie Curie Palliative Care Research Department Qualitative findings RFH - end of life care Prognosis discussions Patients don t understand their results,...are unable to interpret them, are unaware of what the reality is for them (General Practitioner) Drs don t ask patients about their EOL wishes..we are too busy trying to get them better (Hepatologist) Drs have difficulties identifying the dying phase It is a big problem to identify if someone is dying which causes conflict everyday (Hepatologist ) Are there any tools that identify patients earlier? SPICT tool Supportive and Palliative Care Indicators Tool. Bristol Development of a supportive care intervention Holistic early referral to develop a shared care liver pathway for patients - Basildon Specific triggers SPICT Tool 2 or more unplanned admissions in a year (SPICT Tool) - solutions Transplant assessment when to refer to palliative care Decreasing performance status Q of Life not done Ascites or hydrothorax unresponsive to treatment -indwelling pleurex catheters Deteriorating renal function improve hydration particularly after paracentesis Episodes of spontaneous bacterial peritonitis - prophylaxis Recurrent variceal bleeding Recurrent episode of HE Hepatocellular cancer progressive or mets Ongoing alcohol consumption in survivors of acute alcoholic hepatitis young population? Room for recovery More than 2 of all of these Use of SPICT tool at RFH Over a 3 month period we used the SPICT tool and identified 20 patients that would fit the tool. Bristol integration of prognostic screening tool and development of supportive care intervention (2017) Over the same time we only referred 7 patients to palliative care Of the 20 patients identified 8 were still alive at 1 year but all but 2 have now died at 2 years. When to refer to community palliative care? 5

Bristol model Models of Good Practice Patients are discussed at an MDT meeting and this is included in the notes Suitability or not for liver transplantation is also clearly documented It generates a letter to the GP with a clear plan for the patient Each patient has a named CNS There is ongoing training for the whole team in advanced communication skills Delivers supportive care interventions to run in parallel to their ongoing active management (Hudson et al, 2017) Named Liver Disease Nurse working within a hospice aiming to : Manage symptoms with expertise in managing those that are very specific to liver disease. Coordination of care and support (signposting) Advance care planning (before patients develop encephalopathy) Family support (as often young patients) Education for primary and secondary care by working alongside hepatology team in secondary care Models of Good Practice Hospice and DGH working together to offer: Holistic needs assessment Day care in hospice Paracentesis in hospice Improving patient choice and quality of care Who should have the discussions? Someone who: Knows the patient Consistent message Knowledge Confidence / comfort in this area Communication skills Time May be more than one person: One professional discusses prognosis and another helps with care planning Case Study 70yr old lady with NASH cirrhosis an ascites that had become diuretic resistant at the beginning of Jan 2017 PMH Obesity, Cardiac failure, Bilateral leg oedema, Stroke in 2016 affecting speech and right eye. Social retired lives at home with son Liver Issues discussed the moving ito a duifferent phase of diseas early Jan and GP aware Difficult to do paracentesis as large amount of adipose tissue to get through often leaked after paracentesis Referred to palliative care Sept 2017, had DN in to bandage both legs Cont Problems Increasingly bedbound Reliant on tertiary care had several bad experiences at local hospital Palliative care and GP on in a different area to where patient lives so care disjointed. New Care Plan register with new GP local visits regularly change in DN team and palliative care improved communication now booked for respite care in hospice in Feb inserted rocket drain before Christmas draining well weekly telephone clinic with CNS patient says I have got my sense of humour back 6

Liver care planning checklist in clinic or OPC Ascites paracentesis, alpha pump, pleurex drain, care in community? Hepatic encephalopathy early identification by carer to keep pt at home Bacterial infections - prophylaxis Gastrointestinal bleeding banding /beta-blockers Kidney failure - stop renal toxic medication Intensive care - discussion with patient and family Alcohol problems - frank discussion and compromise Psychological Problems addressing anxiety, fear, isolation family problems How are we doing in comparison with Getting it right? Sets out an agenda for providing a seamless integrated high-quality for patients with advanced live disease to manage symptoms and support early identification and communication about advance care planning across healthcare settings form periods of active intervention to care in the last days of life Where are we? Future developments Ongoing research in this area to evaluate and embed supportive care into the management of patients with end-stage liver disease. Improve the quality of care our patients and their families / carers get across secondary and primary care. Share findings and work collaboratively Publish findings to raise awareness in the hepatology field BASL working group to update Improving End of Life Care for liver Disease (2013) but with a more practical approach ongoing next meeting March 2018 Future developments Working group to update the Palliative Care Formulary - Hepatic impairment chapter publish end of 2018 Ongoing pilot trial of inserting of abdominal pleurex / rocket drains to manage ascites in the community setting - hopefully becoming a larger scale trial Bristol team still looking at a supportive model palliative care and hepatology consultant doing a joint clinic Work around frailty and a question prompt for patients and their carers Nurse led paracentesis shown to improve patients mortality and satisfaction why because mainly all done by liver nurses or those with an interest in liver patients offer one shop stop Summary Earlier identification of patients needing supportive care by making end of life care routine Increased education for the MDT Use a consistent approach Make sure that patients have a named nurse who can help coordinate their care Better documentation for primary care about the patients condition / ceilings of care. Use feedback from patients and carers to inform and change practice Share good practice BUT we are still missing something that would improve identification Summary Ideally the combination of palliative care with lifesustaining therapy can maximise the patient s quality and quantity of life (Larson, 2015). Thereby providing supportive care with ongoing active care until that becomes futile then the patient and their family are already having quality care with a real understanding that there is no further treatment options and recovery is not possible 7

And finally Sets out an agenda for providing a seamless integrated high-quality for patients with advanced live disease to manage symptoms and support early identification and communication about advance care planning across healthcare settings from periods of active intervention to care in the last days of life Thank - You Where are we? References 1.Williams R, Aspinall R, Bellis M, et al. Addressing liver disease in the UK: a blueprint for attaining excellence in health care and reducing premature mortality from lifestyle issues of excess consumption of alcohol, obesity, and viral hepatitis. Lancet 2014;384:1953 97. 2. Hudson BE, 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. doi:10.1136/flgastro-2016-100734 3. Joseph Low et al. Palliative care for cirrhosis: a UK survey of health professionals 'perceptions, current practice and future needs. Frontline Gastroenterology 2016;7:4 9. doi:10.1136/flgastro-2015-100613 4. Paul Cox-North el al (2013). The transition to End-of-Life-Care in End-stage Liver Disease. Journal of Hospice and Palliative Care Nursing, 2013;15(4):209-215. References 5. Amanda Clements, Lynda Greenslade (2014). Nursing Care for end-stage liver disease. Nursing Times Vol110, No 29; 16-19. 6. Joseph Low el al (2017).Advanced chronic liver disease in the last year of life: a mixed methods study to understand how care in a specialist liver unit could be improved. BMJ Open 2017;7:e016887.doi:10.1136/bmjopen-2017-016887. 7. Sharon Quinn, Virginia Campbell, Karen Sikka (2017). Sooner rather than later: early hospice intervention in advanced liver disease. Gastrointestinal Nursing https://doi.org/10.12968/gasn.2017.15.sup5.s18. 8. 2nd Atlas of variation in risk factors and healthcare for liver disease http://fingertips.phe.org.uk/profile/atlas-of-variation 9. Larson A. Palliative care for patients end-stage liver disease.current Gastrenterol Rep. 2015; 17: 18. http://www.ncbi.nlm.nih.gov/pubmed/25855211. References 10. National Survey of Bereaved People (VOICES): England, 2015. 11. Getting it Right: Improving End of Life Care for People Living with Liver Disease (2013). NS Liver Care National End of Life Care programme. 8