Friday, 8 September 2017

The Man At The Bus Stop

In October 2013, 47 year old Neil Jones was hospitalised in Christchurch Public Hospital. He had severe alcohol-induced hepatitis - inflammation of the liver.

Three weeks later, gastroenterologist Dr Richard Gearry decided that, despite having severe jaundice, Jones' condition had stabilised and he was faking his symptoms in order to stay in hospital.  Gearry ordered Jones' discharge.  Other staff expressed disquiet about this decision in light of how ill Jones was and the fact that he was homeless.

Jones was taken by hospital security to a bus stop near the hospital, and left there.  He was wearing hospital pyjamas because he had soiled his own clothes.  He lay on the ground at the bus stop for six hours, severely jaundiced, barely coherent and unable to walk.  

The hospital’s security staff were instructed to tell members of the public who expressed concern about Jones, that he was alright.  He was eventually brought back into the emergency department but was not reassessed or readmitted.

Instead, police were called to remove him from the waiting room and to issue a trespass order - i.e. order him not to return on pain of arrest. The police officers did not question this and delivered Jones to the City Mission who took him in, despite having serious concerns about how extremely ill he was. 

The Mission asked the police officers for an assurance that they would take Jones back to hospital if he deteriorated.  When Jones began vomiting blood, the police were called and after a 2 hour wait, the Mission phoned for an ambulance.  Jones was readmitted to hospital and he died there 2 days later.

Neil Jones had become an alcoholic after his partner's suicide in 2008 and at his worst was said to have been drinking 3 litres of vodka a day. How he managed to afford to buy that much is not known.

What is known is that he wanted to stop drinking but couldn't do it on his own and there is a shortage of places for alcohol and drug rehabilitation in Christchurch because of government funding cuts.  When he tried to get onto a rehab programme in late August 2013 there was a long waiting list and he started drinking again. 

Because of his severe alcoholism, his family and his partner had taken out trespass orders against him, which had left him homeless.  He was in the grip of a powerful current of extreme adverse circumstances and was unable to extricate himself from it. He was drowning and he needed a life line. 

When he was first hospitalised, he had not eaten for 3 days and was severely constipated - to the extent that his breath 'smelled faecal' according to nurses. 

During his stay he was often drowsy and could not follow instructions. On the day of his discharge Jones soiled himself and the conclusion was he was doing that deliberately in order to stay off the streets even though he was severely jaundiced and the fact that bladder dysfunction along with reduced GI motility and loss of sphincter control leading to constipation, diarrhoea and incontinence are all features of advanced liver disease. 

I don't know what tests were done on Jones or what treatments he received. What I do know is that when a person's liver is profoundly compromised, waste products that are normally filtered out by the liver build up in the blood stream and can cross the blood-brain barrier resulting in one of liver failure's most horrible complications - hepatic encephalopathy.  

Hepatic encephalopathy can cause intellectual impairment, confusion, irritability, loss of control of bodily functions, drowsiness and ultimately, if untreated, it results in coma and death.  

The symptomatic treatment for it is the use of powerful laxatives to clean out the bowel and reduce the build up of neuro-toxins in the blood. These laxatives can cause explosive and uncontrollable diarrhoea.  

Another complication of advanced liver disease is variceal haemorrhage - which is what ultimately killed Neil Jones.  Cirrhosis - scarring of the liver caused by chronic inflammation - causes an Increase in pressure in the portal vein system which takes blood from the intestines to the liver. 

This portal hypertension results in enlarged and weakened veins in the oesophagus, stomach and rectum. As portal hypertension increases, these varices can rupture, causing internal bleeding, which will result in death if especially severe and/ or untreated.

The other major player in this end stage liver disease drama is hepatorenal syndrome. The kidneys can fail because of vasoconstriction as a consequence of the disturbances to systemic circulation caused by portal hypertension. 

The only way kidney function can be protected long-term is with a liver transplant or if the patient has sufficient healthy liver cells and can be kept haemodynamically stable until the liver is able to regenerate enough for systemic circulation to improve. 

However, the reality is that if portal hypertension is severe enough to cause varices and ascites (fluid leaking from blood vessels and liver which builds up in the abdominal cavity) the disease has already progressed to the point where a liver transplant is the only hope.

Liver transplants are hugely expensive and there are too few organ donors; the only hospital which performs them is in Auckland; to get onto the list you have to be judged to be a suitable candidate physically and psychologically, you must be able to be at the hospital within a few hours of a liver becoming available, have a person who can accompany you, and be able to live near the hospital until all the postoperative care is completed, which may take weeks.

That means if you are an alcoholic, if you are homeless, poor or you are judged for some other reason not to be a suitable candidate for transplantation, you will die.  In fact, most people with advanced liver disease die.  Once active treatment ceases, they are sent home to die or they go into a hospice.  

For a man with advanced liver disease to be dumped at a bus stop in hospital pyjamas is so unthinkable it is hard to write about it without anger taking over. 

It has plunged me back into the storm of emotions I felt when I watched my younger brother die from liver disease with all of its many awful complications - refractory ascites, oesophageal varices, hepatic encephalopathy and hepatorenal syndrome. He was not in the same situation as Neil Jones but, like Jones' family, we were left with many unresolved questions about his treatment - especially on discharge. 

Another factor in Jones' tragic story is the extent of the pain that he may have been experiencing.  Pain management for cirrhotic patients is hugely problematic in that opioids cause constipation which increases the likelihood of hepatic encephalopathy, and non-steroidal anti-inflammatories can cause renal failure and gastric bleeding.  The only drug judged to be safe is paracetamol but in overdose paracetamol is acutely hepatoxic and what constitutes an overdose for a cirrhotic patient is hard to measure so it is prescribed in such small doses it is next to useless as an analgesic for severe pain.

Neil Jones went into hospital already carrying the label of hopeless alcoholic and it does seem he became a victim of that undercurrent of moralism which so often accompanies it.  In addition to being desperately ill, poor and homeless, he had no-one to act as his advocate - i.e. no-one the hospital staff were immediately answerable to.  

if he was suffering from mild to severe episodes of hepatic encephalopathy he was not able to speak for himself or to look after his own interests.  By repeatedly soiling himself and being extremely confused he may have been seen as a problem patient by some staff. According to Doctor Gearry it was feed back from some staff which led to his decision to discharge Jones, even though other staff challenged both the medical wisdom and the humanity of that decision.

Arguably the most telling thing about this is the fact that, despite the discharge debacle, no post-mortem was carried out and the on-duty coroner decided there was no need for an inquest.  If Neil Jones' family had not complained, we'd never have known how appallingly bad his treatment had been. 

As anyone will tell you who has lost loved ones - even loved ones who were as hard to help as someone like Neil Jones - the loss is that much harder to bear when you believe there were things that could and should have been done which might have altered the outcome.

If a veterinary clinic dumped a stray dog, suffering from a painful and incurable disease, out on to the street to die, there would be immediate and extreme outrage.  As his mother has said, that is precisely what was done to Neil Jones. 

The system casually spat Neil Jones out and in so doing, it failed him so profoundly it is hard to comprehend that such a thing could happen in New Zealand.

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