The Last Act of Love

by Cathy Rentzenbrink

M Hinchliffe for the Official Solicitor

  Elmhurst & Maxton

  SIR STEPHEN BROWN (P):

  This is a distressing case which has given rise to an application by the parents of a young man who is now 24, but who suffered a serious road accident injury as long ago as 1990. He is in what the experienced medical witnesses have described as a “permanent vegetative state”.

  Professor Jennett, who has perhaps more experience than anybody else – except perhaps Dr Andrews – of this condition, has no doubt that he is in a permanent vegetative state, and has been in that condition now for several years with no hope of recovery.

  The application made is that the court should grant a declaration that plaintiffs and the responsible medical practitioners having the care of this young man may lawfully discontinue all life-sustaining treatment and medical support measures, including nutrition and hydration by artificial means, designed to keep “M” alive in his existing permanent vegetative state, and may lawfully furnish such treatment and nursing care under medical supervision as may be appropriate to ensure that “M” suffers the least distress and retains the greatest dignity until such time as his life comes to an end.

  I have observed that it is a distressing case, particularly moving, because this young man in his young life had achieved so much and showed great promise for the future. I have before me a lengthy affidavit sworn by his mother who has given him remarkable care over the past seven years. It is a very moving account of how the family had to face the appalling tragedy which confronted them, and how they had to live with the day-to-day knowledge which grew upon them, that there would be no hope of recovery.

  They had at the beginning optimism and hope and one can well understand it, but the initial grave condition was exacerbated quite shortly afterwards by the onset of epilepsy. By 1992 this young man was experiencing epileptic fits fortnightly.

  The medical attention has been superb and intensive. He was initially in intensive care in hospital. There came a time in April, 1991 when he was taken home and nursed there by his mother, and eight or nine devoted care attendants, all of course under the supervision not only of the General Practitioner, whose affidavit evidence I have before me, but also of the Consultant Neurosurgeon who saw him on frequent occasions and who has reported on no less than six occasions and I have his affidavit evidence before me.

  There is no doubt in my mind having heard and read all the evidence that for several years now this young man has been wholly unaware of anything that goes on about him. It is one of the features of this condition that there are reflex responses which can give to those unaccustomed with dealing with these matters, a false idea of the patient’s actual condition.

  In this case there was, of course, another feature, that is to say, because this young man had suffered injuries as a pedestrian by being knocked down by a motor vehicle there was claim for damages, and that had to be investigated by those pursuing the claim. The Court of Protection has been involved and, of course, the insurance company representing the driver of the motor vehicle. They had to make their inquiries and one step that they took was to instruct a Neurologist who examined this patient and I have before me Reports of 1992 and 1993 in which that Doctor seemed to indicate that there was some degree of awareness. But as has been pointed out by Dr Howe, to whom I shall refer in due course, in these reports it rather seems as though that Doctor was describing rather more what he had been told than what he actually observed himself.

  Of course those matters have put the Official Solicitor, and indeed the plaintiffs’ doctors on inquiry, and hence, of course, the instruction of Professor Jennett as a totally independent and experienced expert in this field, and also of Dr Howe, a Consultant Neurologist of great experience in this field. He was, in fact, the Consultant Neurologist who had the initial responsibility for the care of Mr Bland, whose case was the first to come before the courts in this area.

  I have heard the oral evidence of Professor Jennett, and of Dr Howe. Both these witnesses are in no doubt at all that this is a classic case of the persistent vegetative state. There is no awareness; there is an indication of some nystagmus which Professor Jennett describes as a confusing matter, and has been described by Dr Howe as being recognized now as something that can be generated by the brain stem. In recent research which he has conducted himself by investigating with others in this condition, he has made it plain that that is not a matter which can indicate real living awareness.

  The parents and sister of “M” have no doubt whatsoever of their daily observations, and they of all people are most in touch with him, that this is not a “living person” – I put that in inverted commas – but merely the body shell of a spirit who no longer exists in this world. It is a very sad case indeed.

  Every case which gives rise to the permanent vegetative state is distressing, but I believe this to be particularly distressing to these caring parents who have in their minds only the best interests of their son. They have not undertaken these proceedings lightly. Indeed, it is quite plain from the lengthy affidavit of the mother that there has been a very great deal of heart searching in the past, but they have come to the conclusion that it is in the best interests of their son that his physical existence should now be allowed to come to an end in a dignified manner.

  I have heard Mr Hinchliffe, who appears for the Official Solicitor, who has conducted the fullest inquiries on behalf of this patient who cannot, of course, instruct anybody himself. This has been investigated with the very greatest care and I am quite satisfied that it is a case of permanent vegetative state, that it has existed now for several years, and that there is no possibility of any recovery or improvement. In these circumstances it is in the best interests of “M” that these declarations should be granted, and I propose to grant them.

  I would like to express my appreciation of the tremendous care which has been given to “M” by his mother, father and sister, and to express, what I am sure all those in court will wish to be associated with, the very greatest admiration for their courage and the care which they have given to him. I believe that the time has come when the reality of the position must be recognized, and accordingly I make the declarations.

  Application granted.

  DEATH COMES AS THE END

  On Tuesday 23 June 1998, Matty made his last homecoming. We told no one about the withdrawal because we were still worried that religious protesters would try to stop it. We just said that Matty was very poorly and had come home to die.

  We’d discussed how we could cope with it in a way that reminded me of coming home in the car the morning after the accident. Mum and Dad made a plan that she would look after Matty, and Dad would look after her. I would stay in London for a few days and then travel up to Yorkshire on Friday with John after he finished work. That would be day four of withdrawal and by then Matty should be in full coma. I envisaged sitting by his bed, holding his hand, being with him as he slipped away. I’d talk him through his last hours with childhood stories, the way I used to. I hoped that once in deep coma, I’d be able to see the lost Matty in his sleeping face. I wanted to try to forget the eight years that had passed since that night in the road, to remember him as he was and to be able to mourn him.

  I phoned my parents two or three times a day and they talked me through everything they were doing. They worked out what equipment they needed to bring back from the nursing home: the electrically operated bed, the ripple mattress, the hoist, convenes, urine bags, medications. They didn’t need the feeding paraphernalia as the withdrawal was to start straightaway. Mum went up to the nursing home and helped Sue to bathe Matty, whilst Dad transferred the bed and mattress to the bungalow, then came back for Matty. His bed was put back at the side of Mum’s and Dad’s, and they tried to make the room look as little like a hospital as possible: freesias on the windowsill, World Cup commentary on the radio. Mum had set herself up with a table and a jigsaw to keep her company through the coming hours.

  Dr Howe had to
ld them what to expect. He said there would be an increase in reflex motor activity because of an increase in adrenaline stimulating the brain stem’s motor reflexes. After two or three days, Matty’s eyes would close and a coma state would come in. The whole process would take seven to ten days, and if the patient had been well looked-after up to the time of treatment withdrawal, it would be on the longer side.

  He said that Matty’s death would probably occur because of kidney failure (increase in potassium) and/or a chest infection (decrease in oxygen in the blood). Both act to stop the heart. We would know we were near the end when his breathing rate increased. The GP would call every few days, and Dr Howe said we could ring him any time. The GP said to use diazepam as a sedative as often as necessary, and not to let Matty be uncomfortable at all. It was important that no fluids were administered. There was a gel called glandosane to put on his lips to stop them cracking.

  When I rang on Thursday I could hear the stress in Mum’s voice, though she was trying to sound upbeat.

  ‘He’s still awake and making quite a lot of noise, but he should go into coma soon.’

  She had used up all the diazepam and had been upset when the chemist hadn’t had any earlier in the day. She had rung for a prescription, rung the chemist to check they had it, collected the prescription from the surgery, but when she called at the chemist found they had none in stock.

  ‘Sorry to be so self-pitying,’ she said to me, ‘but it doesn’t seem a lot to ask when we are doing so much ourselves.’

  When John and I arrived at the pub late on Friday night, I went into the bungalow and John went straight upstairs. I’d met John after Matty had moved to Snaith Hall so John had never seen him, and I didn’t want him to see him now. It was in my mind to protect them both. Matty didn’t need to be observed by yet more people, and I didn’t want John to be faced with the devastating sight of what a blow to the head could do to a human being. I explained this to John and he agreed to leave me to it.

  Mum and Dad looked tired and drawn and Matty was asleep. This was the first time I’d seen him since just after he’d gone to the nursing home almost three years ago. Three years in which I’d tried to get on with life and Matty had stayed still. I felt more strongly than ever that no human being should be made to linger on in a deteriorating body when the brain has gone. Mum said she hoped that this sleep might be the start of the coma that would lead to his death.

  The next morning I could hear Matty as I went into the bungalow. He was making a low groaning sound, a constant ‘Uh-uh, uh-uh.’ When Dr Howe rang he was surprised that he was not yet in coma five days in. He said it could be that Matty was a bit overweight and fat cells hold a lot of water, but he said he still expected the whole process to be over within ten days.

  John went back to London after the weekend and I stayed for another five days. Nothing changed. No coma, no peaceful ending. Mum looked after Matty while Dad and I took Murphy down to the riverbank and went to the pub together. We played lots of games of darts. At one point Dad got three 180s on the bounce, a pretty amazing achievement, though his grim expression didn’t alter.

  I thought of all the years growing up when we’d had a dartboard in the house at Almond Tree Avenue and Dad used to take me and Matty on all the time. He wouldn’t let us win but would always give us a good start so we had a fighting chance. He’d also take us up to the pub and teach us to play pool. I always had the edge over Matty at darts; he was better than me at pool. When I was seventeen I became the youngest ever winner of the Snaith and District Ladies’ Darts Championship. We all went to the club at Drax Power Station for the finals. I threw a 180, for which I’d get an extra trophy, and Dad was so proud when I finished – on double sixteen, my favourite – that he bounded onto the stage and picked me up in his arms. I couldn’t connect anything about that family then with what we’d become over the eight years since Matty’s accident.

  Still, the darts, while not giving us pleasure, gave us something to do. Being honest by nature, it was difficult for us to be with people, given that we weren’t able to tell them the full story. I kept wondering what people would say if they knew, if I just blurted it out.

  ‘How’s your kid?’

  ‘We’re starving him to death right now. His kidneys might be ceasing to function this very second.’

  I tried to sit and talk to Matty but found it very hard and couldn’t bear to look into his eyes. All those years I’d stared into them looking for his soul, and now I hoped he’d never had any awareness of his awful situation, that his soul hadn’t been trapped there, suffering.

  Looking down at his arms, I realized that the scars from the accident had completely healed. I remembered the priest who told us that the fact that Matty’s hair grew meant he’d get better. I stared at Matty’s body, his twisted arm and foot. This healing of scars was the one positive thing that had happened to him physically.

  On the tenth day Dad found me crying in the bungalow and suggested I go back to John.

  ‘You’re breaking your heart here. There’s nothing you can do. Don’t tear yourself apart.’

  One of our customers drove me to Doncaster station and I took the train back to London. I was in agonies of sobbing. I curled up in a little ball and cried all the way. A couple of people asked if they could help, but I just shook my head.

  ‘I’m sorry,’ I choked out. ‘I’m sorry. Please just leave me alone.’

  The news came on Sunday, thirteen days after we had started the withdrawal. I was sitting on the sofa when my dad rang. I can’t remember what I did in the three days between getting back to London and taking the call. It feels like I just sat on the sofa and stared at the phone.

  ‘It’s over, Ca. He’s gone. Poor old chap.’

  He asked me if I was all right, and I could hear the worry in his voice. I remembered seeing the worry on Matty’s face that day I fell off his motorbike and knowing it was a sign of love. I thought of when I’d had to ring Mum from Pontefract on the night of the accident. I thought what a terrible thing to have to do as a father, to ring your daughter to say that your son, her brother, is dead, and to worry how she will cope with it.

  ‘I’ll be OK, Dad,’ I said. ‘I’ll be OK.’

  THE LONG COFFIN

  I woke up crying on the day of Matty’s funeral. I cried my way through putting on my white blouse, my black trousers, my little black ballet pumps, cried as we assembled in the street outside our pub in the hot sun. Mum and Dad. John and Sophie, Frank, Liz and Sue. I knew I was surrounded by love as we walked up the street to the church, following the big, black, shiny hearse and followed in turn by our friends and customers.

  At the church, there was a problem as the undertakers tried to manoeuvre the long coffin out of the car and onto the shoulders of Matty’s friends. There was a little stumble, and I thought they were going to drop him. And it was funny. I felt like I’d seen it before, in Only Fools and Horses or Last of the Summer Wine. For just a moment I wanted to laugh rather than cry.

  Of course the coffin was long because Matty was long. I thought of how his height – all six feet and four inches of him – had been such a source of pride to us all when he was upright and then so problematic after the accident. He had had to have a special extension built on the end of his hospital bed. The shorter physiotherapists and nurses had struggled. ‘Isn’t he long?’ people would say as they looked down at him in a bed, on a mat, in a shower trolley. Not tall, any more, but long. And here again his length was causing problems.

  They didn’t drop him, Matty’s friends, the boys who had grown up with him, played football with him, drunk vodka with him. The boys who had visited him in hospital and then at home until it gradually became clear to everyone that he had no idea they were there. They delivered him safely into the church, we filed our way to the front, and the vicar said some kind things about Matty, about us, and about the love that he saw in our family.

  He told a story about Matty’s competitive streak, about how i
n biology class at school he snapped his friend Lizzie’s broad bean because it was growing faster than his. There was a ripple of laughter and a feeling of relief. He was doing a good job, the vicar, because who knows what to say in this situation? How do you find something to say about someone who hasn’t demonstrated any of their considerable personality for the last eight years?

  As the sun shone through the stained-glass windows making beautiful patterns on the floor and dust motes drifted in the air, the vicar talked about Matty dying with his parents and his sister by his side. But this wasn’t true. It should have been, but I couldn’t hack the final days and it was Sue who had been with my parents when Matty died. The vicar’s mistake was making me feel even more of a useless fraud than I already did. I wasn’t there, I kept thinking as the tears ran down my cheeks, I wasn’t there.

  There were hymns. ‘Abide with Me’ and ‘Dear Lord and Father of Mankind’, which was Mum’s favourite – she’d chosen it for both her wedding and her father’s funeral. My uncle did a reading, 1 Corinthians 13, about how the greatest thing is love.

  We left the church and got into the car that would take us to the crematorium.

  Dad said, ‘Thank God that’s over. Now we can get on with planning your wedding.’

  I stared out of the window.

  I can’t remember much of what happened at the crematorium. I’ve been to other funerals since and they’ve jumbled up in my mind. I can’t remember if the coffin trundled off on a conveyor belt – does that ever actually happen? – or if the curtains were simply drawn around it. I can see faded blue velvet curtains with a brocade trim in my mind, but I can’t swear that it was Matty’s coffin they shrouded. I know I stared at the coffin for a good long time as we listened to Mozart and I wondered about who would be in charge of the next stage. How would the coffin get into an oven, how would that long, tall, body be reduced to a pile of ash? I wondered if Matty’s pile of ash would be bigger than the pile of ash you’d get from a shorter person. I started to feel sick. At least we were burning him, I thought. At one time I’d liked the idea of burying him in the churchyard, but I’d have been even less able to cope with the idea of him rotting away under the ground.