"The Pathway To Death" - Why I Don't Trust It

In recent years the NHS has come under scrutiny and received much press coverage for it's Liverpool Pathway or End of Life policies. The Daily Mail campaign in July 2013 highlighted the plight of those people deemed to be close to death being starved of water and nutrition and given high doses of sedatives in order to prevent requests for food or drink. In some cases those 130,000 patients per year were still capable of drinking orally, either with or without help. It was also widely reported that hospital trusts were given targets and cash incentives to place people on the Pathway - death on demand to help fund the NHS.

Death was normally expected to come within 30 hours on average, but some lasted for weeks, lingering on in what must have been a hellish ordeal for them and their loved ones. There was one documented case of a man who was so thirsty that he was sucking on the sponge that was supposed to be for cleaning his face and mouth. Is this how people are supposed to end their lives in this so-called civilised society?

The Daily Mail reported in July 2016 on a WW2 veteran who had been on the Liverpool Pathway until his death in 2013. He had been admitted to hospital with a chest infection. His medical records stated that he was suffering from dementia, as well as terminal heart and kidney failure. This was later proven to be untrue. Again, in September 2016, the Daily Mail reported that people were “still dying badly”.

Re-wind back to the summer of 2014 when, after the Daily Mail campaign. an independent enquiry and a review by the Leadership Alliance for the Care of Dying People, led to the advice to hospitals being changed. The General Medical Council agreed to adopt most of the new guidelines and in 2015, a revised pathway was introduced which is The End of Life Care Plan.

In this new Care Plan is a section about “recognising dying” and it recommends that food and water should continue to be offered when the patient is able to take it without adverse effects. It also states that tampering with a patient's medical records would be considered a “disciplinary breach” and that “failure to provide oral hydration and nutrition when still possible” would amount to “professional misconduct”.

 Among the signs of impending death are loss of consciousness, slurred speech and hallucinations. Along with certain other factors like skin palour and any known medical issues it is as this point that a senior consultant is charged with the decision to place the patient on the End of Life Care Plan. Death is expected to occur with 29 hours on average, relatives should be informed and the patient too, if he or she is still conscious at this point. Everyone is given their chance to say their goodbyes and await the end in relative peace and with due dignity. 

I have had personal experience of the End of Life Care Plan. My 79 year old father was admitted to hospital in early 2016 after a fall at home. Whilst in hospital his condition deteriorated and he was diagnosed with a Urinary Tract Infection. Huge doses of antibiotics were given intravenously but over the next few weeks he continued to go downhill. He developed pneumonia, began to drift in and out of consciousness and was having hallucinations. His speech was slurred and he was unable to feed himself or drink, even with thickened fluids. He was, we were informed, waiting to die.

The hospital consultants told my 84 year old mum and the rest of the family to prepare for the inevitable. There was, they said, nothing more they could do and even if, by some miracle, he survived, he would never walk again. They were ready to put him onto the End of Life Care Plan. We were devastated by this news. Until he had this fall he had been a reasonably healthy man who had never drunk alcohol or smoked and who was perfectly capable of holding his own in conversation.

He was already disabled from a stroke at birth and had a weak left hand side and suffered from epilepsy that had been controlled by medication for all of his life, but he had learned to cope with his disabilities and had managed to live a relatively normal life. His only other fairly major problem had been lymphoedema in his legs which caused some difficulty walking, but over the course of his stay in hospital his legs had returned to normal size and were now very thin. He had effectively been walking around on water for several years! The thought of this remarkable man, our step-father, who had only ever tried to do good by everyone he ever met, having to spend his last hours in a hospital bed with no food or water was simply heart-breaking.

We demanded a meeting with the consultants and after finally convincing them that the man they had in their hospital ward was not the man we had known until he arrived there, we had a breakthrough. The hospital agreed to fit Dad with a feeding tube which, in their opinion, he would need to have for the rest of his life and to try gradually to reduce his epilepsy medication whilst continuing to monitor his progress, or in their eyes at least, his demise.

The results were astounding! Within a matter of a few days, Dad was sitting up in bed again, He knew who we all were and was amazed to find out that he had been in hospital for almost six weeks! A few days later the feeding tube was removed and he was able to eat small meals and drink thickened fluids. His medication had been reduced to less than half of his previous dosage and it was apparent that this had contributed to his deterioration. In fact, it transpired that he had been accidentally overdosing on his medication for years despite his own GP's recommendation to reduce it!

The doctors were amazed at his recovery, but, as he was still unable to walk due to muscle wastage and unable to use his left arm due to the birth stroke, he was recommended for discharge to a nursing home because Mum couldn't manage him at home. Even though they were paying privately it still took a further three weeks to relocate him due to a shortage of care space. He became a bed-blocker.

Dad spent almost eight months in the nursing home with my mum visiting him every day. His personal mission was to walk again so he could eventually return home, even though the doctors said it couldn't be done. He and Mum paid for an intensive physiotherapy course and with this and his exercises, he was able to gradually build up his strength enough to be able to walk with a frame and was finally well enough to return home. Extensive alterations were made for him to be able to move around at home and last weekend he was able to celebrate his 80^th birthday in his own home, with his wife and family around him. He is now looking forward to trying out his new motorised wheelchair when the weather improves and is ready to start living again.

The End of Life Care Plan is a vast improvement on the old Liverpool Pathway, but there are still many lessons to be learned. It is never acceptable to write someone off just to meet hospital targets or free up beds. My Dad was one of the lucky ones – he had us on his side and our persistence paid off.

I hope that Dad's story will be heard by both the medical profession and relatives alike. Otherwise, how many more elderly and infirm people will be condemned to death before their time is truly at an end?

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Credits to the Daily Mail and the Leadership Alliance for the Care of Dying People