Right to life: 'When the doctor changed his mind it felt like a miracle'

The Monday Interview: A son's quest to stop his father's life support from being turned off has astonished the High Court

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The Independent Online

In the grandeur of the High Court, he is simply referred to as the anonymous Mr L, a patient who cannot speak for himself and whose fate relies on the decisions of doctors.

But to his family, he is a man who toiled for years in textile factories to ensure his children had a university education, who loves cricket, dotes on his four grandchildren and has an inability to see wrong in others.

Today they will return to court to plead for him to be allowed to carry on living. The Court of Protection will hear their determined legal battle against Pennine Acute Hospitals NHS Trust, whose clinicians say that 55-year-old Mr L has such a minimal chance of making a "meaningful recovery" from a cardiac arrest that left him severely brain damaged that a do-not-resuscitate (DNR) order should be in place.

There were extraordinary scenes at the first hearing back in August, which was dramatically adjourned after a doctor confirmed the family's claims that Mr L was showing signs of consciousness.

Every day for the past four months, his wife of 35 years has sat next to her near-motionless husband in hospital, talking about their family and telling him jokes. The other day, when a glimmer of a laugh appeared on his face, it only increased her resolve to defy the doctors and fight to keep him alive.

"As soon as my mum speaks, he knows it is her. He becomes very alert – looks to the side she is speaking. He laughed at her joke. For my Mum it was important that he acknowledged her. It has been hard for her. To be told that her husband is not going to be the man she knew was difficult," said his 25-year-old son.

"My dad always had his family beside him and we will always love him regardless of how he is," he told The Independent. "He was a family man first: that was the passion of his life. He was a sociable person, who got on with anybody. He liked to overlook the bad things in people. Everybody knew him. We would drive in the car and there was always somebody waving."

But at the end of May, having suffered years of ill-health, including pneumonia and two cardiac arrests, he was in hospital when he had another arrest and suffered catastrophic brain damage. The doctors insisted that he was in a persistent vegetative state (PVS) and implemented a DNR instruction.

Fighting the order through the court in August, the family's claim that they were seeing signs of awareness was dismissed as simply reflex movement. The clinicians agreed that there was "no meaningful prospect of further recovery" and to resuscitate him would simply be a "prolongation of death and lack of dignity".

But in an 11th-hour development, a film taken by his eldest son was shown to a leading expert who concluded that he was not in a PVS but in a state of minimal consciousness.

"When they said he was not PVS it felt like a miracle," his son added, describing how every one of Mr L's sons and daughters as well as wider family had visited him every day, sometimes twice a day.

Arriving from Kashmir as a young man, Mr L, from the Greater Manchester area, whose identity is protected by reporting restrictions, worked as a cotton spinner until the pains in his hands made it impossible for him to continue. But he inspired his children and all but two went through university while his eldest son set up his own textile business.

"He used to do everything for us, drive us to three different schools. He doted on us and Mum. He always had good advice but he was good for a laugh and a joke. He would make sure we were going to school and achieving. He was always interested in talking, keeping up with the times."

His strong Islamic faith, his family insists, means that he would never agree to a DNR order.

When his own father was dying, he drove him four hours from Kashmir to Islamabad, his son explained: "He wanted him to get the best treatment, to help prolong his life. He believed human life was important whatever the quality was, regardless of the person."

The night before his eventual collapse, his son visited and remembered him being weak. At the end of visiting hours he pleaded with him to stay.

"It is hard to look back and know he wanted me to stay but visiting times are limited."

The following day the family received a call to say he had been moved to intensive care. They insist that within days they saw signs of consciousness as he responded to requests to open or close his eyes or stick his tongue out: "By the second or third day when they took him off the sedative the responses began but nobody took it on board."

"We would tell him to look at someone and he would look in that direction, sometimes fix them with his gaze. Recently he laughed when my Mum told a joke. It was not a very vocal laugh but an expression. Now he is trying to verbally communicate, move his mouth."

The case is due back before the Court of Protection today when Mr L's doctors and other independent experts will report back on his condition.

Initially they were unanimous in their assessment that he had minimal prospect of improving any neurological function and, if he was capable of feeling pain, would suffer as his physical condition deteriorated. Treatment should be limited to maintaining his dignity and relieving any discomfort, the experts said.

But in a dramatic development during the August hearing, a neurologist, Dr Peter Newman, altered his assessment. After evidence from a doctor that Mr L showed signs of closing his eyes and grimacing during a visit by his family, the independent expert declared that he was no longer in a persistent vegetative state but one of minimal consciousness and he could not rule out further improvement. He is among the experts expected to give evidence during the hearing.

The family's solicitor, Helen Lewis, of the law firm Pannone, said, "At the hearing the court will be given further evidence from Mr L's treating clinicians and also independent doctors. Mr L's family have witnessed further improvements in his condition over the last few weeks and we hope to persuade the judge that it is in Mr L's best interests to attempt to resuscitate him and that Mr L would want to be resuscitated should there be any deterioration in his condition."

He son said: "It is kind of hard to put into words, it consumes your life. It becomes the way you live. You are always trying to hope for the best.

"For us, especially his kids, our Dad raised us to the best of his abilities so the least we can do is put across what he wanted and fight for his rights.

"In an ideal world we would like him back as he was while understanding he is not going to make a huge full recovery. But he is showing signs of improvement. It is very minimal but he is more aware, more alert," he continued.

"Personally it feels amazing. He is somebody who has defied the odds before and he is showing signs of defying the odds again. He is going to prove people wrong."

Court battles: the right to live

* In January, a Norfolk pensioner Bob Hammond received compensation from Queen Elizabeth Hospital in King's Lynn after a do-not-resuscitate order was issued for his wife Jean without his knowledge. The 80-year-old took the case to court and secured an apology and £1,000.

* David Tracey, whose wife died at Addenbrooke's Hospital, Cambridge, is taking legal action against the trust and former Health Secretary Andrew Lansley. He is alleging hospital staff unlawfully issued a DNR order without his 63-year-old wife Janet's consent. The trust and the Department of Health deny acting unlawfully.

* A man with Down's syndrome is suing an NHS trust over a decision to issue a DNR order, giving his disability as one of the reasons. The family of the 51-year-old remained unaware of the order until he had returned from hospital to his care home. East Kent Hospitals University NHS Foundation Trust says it complied fully with guidance.