Missed opportunities for liver disease

There has been a great deal of media publicity relating to the issues surrounding alcohol abuse and a number of documents have been published highlighting care recommendations for patients with alcohol-related liver disease (ARLD). In The National Plan for Liver Service published in 20091 the British Society of Gastroenterology (BSG) identified that secondary care of liver disease was poorly organised and suggested that services for liver patients could be improved at relatively little cost to the NHS. In 2010, the British Society of Gastroenterology, Alcohol Health Alliance UK and the British Association for Study of the Liver published a joint position statement on the care of patients with alcohol-related disease.2 This report made a series of key recommendations about how the average district general hospital could organise its services to improve care for patients with alcohol-related problems. There has also been guidance from the National Institute for Health and Care Excellence (NICE)3 and reports from the Royal College of Physicians of London4 and the NHS Confederation,5 while the National End of Life Care Intelligence Network has recently documented concerns about end-of-life care for this group of patients and the variations in that care.6 The Chief Medical Officer’s 2011 report, published last year, also highlighted liver disease as one of the three key areas for population health.7 The figures surrounding liver disease continue to be a cause for concern. The recent Atlas of Liver Care for England8 indicated that there has been an 88% rise in age-standardised mortality from chronic liver disease, the only one of the major diseases which is still increasing, of which alcohol-related liver disease is one of the primary causes, along with viral hepatitis. Cirrhosis deaths are also rising in England while falling in most other EU countries and the growing impact of alcohol misuse is estimated to cost the NHS £3.5 bn a year. Data from the Office for National Statistics demonstrated that there were 8,748 ARLD deaths in the UK in 2011.9 A recent report by Sheron et al also describes the extent of alcohol-related morbidity and mortality nationally and internationally.10 ARLD is also known to be a disease of the young – while mortality from liver disease has risen steadily, the average age of death is only 59 years and is falling.6 This is in contrast to other major causes of mortality such as heart and lung disease or stroke, where the average age of death is over 80 years and is rising due to improved public health and medical intervention.

More worrying statistics

The latest report from the National Confidential Enquiry into Patient Outcome and Death (NCEPOD) adds further worrying statistics to those already listed. ‘Measuring the Units – a review of patients who died with alcohol-related liver disease’ set out to identify the remediable factors in the quality of care provided to patients who died with a diagnosis of ARLD. During the six-month study period, 2454 patients were identified to NCEPOD as dying with a diagnosis of ARLD. It is well documented that many patients who succumb to ARLD have multiple hospital admissions prior to the episode in which they die. In the current study, 71% of the patients identified to NCEPOD had one or more admissions to hospital in the two years prior to the admission in which they died. The report summary states that the care of patients who died with a diagnosis of ARLD was rated as less than good in more than half of the cases reviewed. The majority of patients had been to hospital at least once in the two years prior to the admission when they died yet not enough was done about their harmful drinking at that time. There was a failure to screen adequately for harmful use of alcohol and even when this was identified, patients were not referred for support. The report said that when patients were admitted with signs and symptoms of serious liver damage, there were many missed opportunities to improve their care by doing simple things such as optimising fluid management and screening for, or treating, sepsis. In a complex group of patients, specialist review would generally have been of benefit to define the best treatment options, commented the report authors. This was frequently delayed and sometimes did not happen at all. When organ failure occurred and an escalation of treatment was indicated, again, the additional treatment that was needed was often not given. Both the advisors who reviewed the cases and the clinicians who looked after the patients in their own hospitals also often agreed that there was room for improvement in care because of these missed opportunities. The report concluded that these findings should be taken as a further opportunity to improve the care of patients with ARLD. The challenge, say the report authors, is to use this report and its recommendations to organise services, improve the assessment of patients and to ensure early specialist review and appropriate escalation of care for this complex group of patients. Bertie Leigh, NCEPOD chair, is troubled by the findings. He said: “We know that this is a group of people who are difficult to help. But they are still entitled to be treated on their clinical merits and given the care that would bring benefit... I fear that there is more than a hint of dismissive attitudes in many of these cases, according to the advisors. The illness may be self-inflicted, like so many lifestyle diseases and the prospects of a cure for many of these people may not have been propitious for some years. But the present concern about the quality of care delivered in our hospitals is as valid for them as it is for any other group of patients: no decent healthcare system should write people off or deem them less worthy of the best care available to them.” Mr Leigh went on to explain that the report is an assessment of work in progress. He said: “The National Liver Plan was published in 2009 and the patients featured in this report were treated two years later. Some of the shortcomings identified could not have been addressed so quickly – indeed the Plan allows until 2016 to recruit more trained hepatologists. But we felt, as did the National Clinical Director for Liver Care, Professor Martin Lombard, that two years would provide a useful interval for NCEPOD to see how things are getting on.”