by Lu Spinney
Miles’s partially sentient self – is it the same self as before? If it is a different self, is he still the same person? The children and I drew up a list together once with a friend of Miles’s. It was a list of what had defined Miles, and what defines him now.
BeforeAfter
A protectorDefenceless
DeterminedHelpless
PowerfulVulnerable
IntellectualBrain-damaged
DecisiveUnable to make decisions
Strategic thinkerUnable to think ahead
ArticulateMute
WittyMute
FunnySad
ProactiveUnable to initiate
IrascibleLong-suffering
ImpatientLong-suffering
ArtisticImpaired vision
Enjoyer of good foodUnable to swallow
We could have continued; the point was that in every conceivable way we could think of Miles had been rendered the opposite by his accident.
Now something else comes to mind, to complete the list:
To beNot to be
When Miles was thirteen he was chosen to play Hamlet in the annual school play. The actors’ parents helped backstage if they had the time and I was put in charge of doing the make-up. It was huge fun for me – small boys between nine and thirteen are a joyful species – but the English master was serious in his aim of showing what his boys could rise to; he told me he had always wanted to produce Hamlet and knew when he first taught Miles aged ten that he had found his man, as he put it. The school gym was adjacent to the main hall where the production took place and a number of thick mattresses were laid out on the floor for the boys to sit on while they waited to go on stage. I would wait there to touch up their make-up if necessary and I have fond memories – I think of Ophelia, a slight eleven year old as pretty as a girl in his pale make-up and long white dress, coming off stage and in repressed exuberance taking a flying leap on to a mattress with a resounding tearing of lace.
But at thirteen Miles was beginning to leave that exuberance behind. The painful clouds of adolescence were lowering on the horizon and with them came sudden unexpected squalls of introspection and self-doubt. The newness of them informed his delivery and Shakespeare’s words were expressed with a moving rawness quite different from that of a more mature actor. Now when I read those words they have quite another resonance for me: To be, or not to be, that is the question . . . To die – to sleep, No more: and by a sleep to say we end the heart-ache . . .
I have made an appointment to see an eminent barrister, a QC who specialises in Court of Protection and medical decisions. The children and I meet with my solicitor Brian and his assistant at the barrister’s chambers and make small talk as we wait. Brian has advised me kindly throughout the raft of administrative measures I have had to deal with in my position as Miles’s legal guardian and I know he is concerned about this new situation. He is involved with both his local church and local hospice and I am sure it runs against his belief. What he would not understand is the bitter irony in me feeling that I am about to appear before a judge of the highest court to plead for Miles’s life, not its ending, as though everything that has happened over the past four years now hinges on me to resolve.
I have done my homework for this meeting as requested, have sent the QC in advance a summary of Miles’s life and his character before the accident and a chronological assessment of his life and treatment since the accident. The barrister arrives and ushers us into the meeting room. He looks every part the classical lawyer, silver-haired, distinguished, but his manner is immediately informal and he puts us at our ease as we hesitantly seat ourselves around the intimidatingly large and gleaming boardroom table. He is empathetic about Miles’s predicament. He asks us all our views and listens respectfully. He has clearly read everything we sent him and he has got the measure of Miles’s character.
By the end of the meeting he has reached the opinion that he is prepared to take on Miles’s case. Having listened to what we have all had to say and having read the two doctors’ reports, both Dr Davies and Dr Jensen, as well as the reports from Miles’s time at Putney and Addenbrooke’s in Cambridge, he is of the opinion that the Court might consider Miles’s case sympathetically. From these reports he understands that Miles is not aware all of the time but is definitely aware some of the time. He tells us that, as a barrister, he has seen many families who interpret signs from loved ones optimistically, but it seems to him that we are not such a family. He understands the irony of our situation, that we had spent our time since Miles’s accident arguing that he should be receiving better treatment but that now we are fighting for Miles’s life and his suffering to be ended, which is a total shift from our initial feelings. He understands that it is no longer in Miles’s best interests to continue; were he in the family’s situation, he would feel the same. If we are prepared to face the very difficult and long process of an application to the Court, he is willing to help us. We should discuss among ourselves what we have learnt of the process and whether we still wish to go ahead and instruct him.
As we leave the chambers and walk together down the Embankment to Charing Cross I think about that sunlit walk four years ago along the river Inn in Innsbruck. So much has happened, and so little.
The gravity of our situation is onerous. Our lives, the children and mine, are weighted with the knowledge of what we may be embarking on, though there is no dilemma as to its rightness. It is a mission of mercy. I speak about it with a few very close and trusted friends, Jennifer, Matthew, a lawyer Andrew and his wife Madeleine; their support and advice is invaluable. I’m given the name of a rehabilitation expert, Dr Lazard, who has acted in end of life cases as the patient’s so-called ‘litigation friend’ for the Court of Protection’s Official Solicitor and I contact his secretary. She tells me a good time to call him and when I do we speak on the phone for over an hour; though he doesn’t know Miles or me, his experience allows him to understand the situation precisely and he is unexpectedly supportive and sympathetic. But his advice is clear: the law only allows end of life requests to apply to patients who are PVS. He does not believe a Court of Protection judge would grant the request. In his view it would be a long, painful, expensive process for nothing. And then he confides in me that he knows there is a ground-breaking case going through the Court at the moment for a person who is MCS; he can’t tell me more than that but we should wait to hear the result before we embark on any proceedings. Call me in six months’ time, he says, and I will be able to tell you more.
This news is both reassuring and frustrating. I wish I could know the story behind the other application, could contact the family to share our experience and give them our support. If they are successful it will pave the way for our application, just as the initial PVS case of the Hillsborough victim Tony Bland changed the law in 1993. If they are not successful, Miles’s situation will be even more difficult. We must wait and Miles must continue to endure his existence.
Ray has been in and out of hospital for the past month, and one day Tracy asks me what the word palliative means. I’ve been told a palliative care doctor is coming from a hospice to see Ray, she says. He doesn’t need a new bloody doctor. What’s he coming for? She has no idea what it means but she knows what a hospice is and she is alarmed and angry.
I don’t think it’s for me to tell her that the doctors believe Ray’s life is nearing its end. All I can do is suggest that she telephones the hospice, explain who she is and ask to speak to the palliative care doctor who is going to see him. I hope the doctor will be understanding and undeterred by her anger. I wish I could protect her from the horror that must surely engulf her when Ray dies, for I fear her love for him is the one stable thing in her life. It has been an illuminating experience, a privilege, to witness the courage of this young woman whose life has been so narrowed down in every way, and her refusal to accept that
the tragedy of Ray’s situation should have made him any different.
Four days later Ray died. I was away for a long weekend and Joseph told me what happened. Ray had been readmitted to hospital and then was sent back to Gael Lodge. There was nothing more that could be done for him and he was put on a syringe driver of morphine with no further treatment prescribed. When it became clear he was dying Tracy spent the night in his room and in the morning she went to Rachel to explain that she would now have to call his family because in the Romany tradition all his relatives must come to see him before he dies.
The first one arrived at 10.30 in the morning and by the end of the day more than two hundred people had come to see Ray. All of them were travellers, large men and women who crammed themselves into his small upstairs room while their children ran about through the day rooms and in the garden, shouting happily at each other and throwing snowballs at the windows. The adults brought in alcohol and smoked in the ward. One man fell over in Ray’s room and cut his head so badly the nurse on duty had to attend to him; another fell off the chair in Rachel’s office while asking her to phone Croydon police station because he was on bail and due to report there in an hour – could she explain to them that his brother was dying so he wouldn’t be able to make it? Despite the care staff putting up a large makeshift notice warning that the lift could take no more than six people, in the early evening it finally broke down completely between the two floors with ten people in it. One of the men had tried to force open the metal doors, cut his hand, and bled all over the lift and down the lift shaft.
Throughout the day Tracy remained at Ray’s side. Her behaviour was impeccably restrained during this final time; she understood what was happening. Little Ray was not with her; he played with the other children. Around 7 that evening Ray died and the last travellers took their leave.
The ward is small and there is only one lift. Repairing it is an expensive and complicated procedure. Luckily Miles’s room is on the ground floor, but for the next few days the patients upstairs are unable to be brought down for treatment, while Ellen has been stranded downstairs and has had to be re-accommodated on another ward.
Ray’s death affects us all deeply. The ward feels a much colder place without him, without Tracy and little Ray, their exuberance and their innocence.
Six months have passed and I call Dr Lazard. He tells me that the MCS case he had told me about is still under review and he does not think it will be resolved for some considerable time, probably not until next year. He reiterates his view that there is absolutely no point in our applying to the Court until we know the result.
Miles’s mood is increasingly bleak and nothing we do appears to distract or engage him. Claudia returns from a visit one day in tears. He seemed so depressed, so utterly desolate, Mum, that I just couldn’t help slipping into the old thing of telling him how well he was doing and how he would recover. And then the same thing happened as before – as I said the words he did that awful tensing up he does, his legs lifting rigid and his head pushed forward out of the headrest and he glared at me with such undisguised fury it was obvious what he was saying, he was telling me to stop the lie. It was frightening. I felt I had to apologise and I said I’m so sorry, Miles, it’s not true. You understand your situation. I know what you want, and I’m going to look into ways of doing it for you. I will help you get out of this. As I said that he relaxed back into the chair and closed his eyes in the way he does when we’ve understood him and the effort is over. His anger was shocking, Mum. He still feels so passionately. I can’t bear him suffering like this.
None of us can. I see how it is affecting Will and Marina too, the solemn tenderness with which they engage with him and their extreme sadness after each visit, the sense of defeat. We try to make a point of having Miles’s friends around on Sundays, so that his visit home is lightened with outside banter to lift the atmosphere. But while the children and I continue to wait for the results of the Court of Protection case, our mood is darkening. How can I describe the fact that we now sit around the kitchen table and discuss how to end Miles’s life ourselves? We have heard that it is quite possible to buy the necessary fatal drug over the internet, but the dread-filled, restraining fear is that we don’t know the precise, correct dose. I have a number of friends who are doctors. Could I ask them? Do we really have the courage to follow this through? Our desire to help Miles is now accompanied by a growing anger at the realisation that one man or one woman, a judge, a person who does not know Miles and most likely has no personal experience of traumatic brain damage, will be the ultimate arbiter of his life. How can his or her personal beliefs not influence the outcome? It is a deeply sensitive, personal, moral issue; it should not be a legal one.
I think of the moment when Miles pressed his thumb down on my hand under the pergola, his look of deep, yearning pity. I can’t help but believe that at the beginning, in Innsbruck, he stayed for our sake, the ultimate protector. He has suffered enough for that decision. It is our duty now to let him go.
In cold desperation one morning I contact Dignitas. As I dial the number I sense that the line I am crossing with this call is irrevocable. I explain the situation to the person who answers the phone, though all the time I am aware that Miles will certainly not be eligible because he is not able to express his intention to end his life or to undertake the last act himself, either to swallow or to administer the drug via his gastric tube. The woman I am speaking to confirms my fears, but she is so understanding and sympathetic that I find myself crying on the phone with this stranger. I feel so helpless, I tell her. My son falls outside every avenue of hope – he is not PVS so he doesn’t fit the British legal qualification, he is not eligible for Dignitas, and he can’t do it himself. Yet he is aware enough to suffer, and to convey his suffering to us and to the doctors treating him. I wish I could help you, she says. Maybe in the future you will be able to help me personally, I tell her. I strongly support the view that, when facing the end of life, if it is what a person wishes, he or she should be allowed to choose the time and the manner in which they die. I do not think it should be for the state to decide.
Putting down the phone I think: I have cut the very last thread of hope. We are in a different place now. And then I think: maybe all four of us should hold the fatal syringe together. We will gift Miles this last thing as one, loving him as one. Let the judges do with that what they will. Put the four of us in jail. How the tabloids would love it. Perhaps it would finally make somebody understand the wretchedness and indignity of the lives so many people are currently condemned to live.
Talking to Jennifer I tell her of the call to Dignitas. She is one of my closest friends and I am losing her to the breast cancer that has now metastasised, though for the moment she is in remission. She is a doctor, a consultant psychiatrist. She has known Miles since he was a boy, has three children of her own, and the prospect of losing her warmth, vitality, humour, wisdom, I cannot absorb. I will do it for Miles, she says. While I lay in the hospital bed after my last treatment I could only think of Miles. I understood, for a while, what he is going through. I had to ask the nurse to stop the hands on the clock above the door – I could not endure the seconds passing by. Time was a terrible thing, unbearable. I would gladly release him from that and you know I no longer have to be concerned with jeopardising my career. But I cannot let her; her remaining life is fragile and I don’t want her to take on such a responsibility. It is entirely ours to resolve; and yet we cannot bring ourselves to act.
In a way Jennifer’s offer clarifies my dilemma, our dilemma. The desire to help Miles is clear and fervent, but it is a matter of principle, a thing of the mind. The physical act, however we use words, language, to describe our desire for it, is different. It is not our place. We need instruction; we are not doctors, we do not know how. We fear getting it wrong. Compassion is not enough; skill is required too. I have followed the story in the press of a mother who tried to end the l
ife of her son who suffered a traumatic brain injury when, following a pub fight, he was taken to hospital by ambulance but managed to open the back doors and fell out while it was still moving. Two months after his injury she injected him with street heroin in an attempt to end his life, but instead he suffered a heart attack. He was resuscitated, following which his disabilities were even more profound and he was now deemed to be in a vegetative state. She was banned from seeing him, but some months later she gained entry to his rehabilitation unit under an assumed name and this time the dose of heroin succeeded. At her trial the doctors said that her son was showing signs of possible recovery before her first attempt disabled him further. She was jailed, after appeal, for five years.
I do not identify with this woman, though I feel immense pity for her. I find it incomprehensible that she did not give her son a chance to recover, that her first injection of heroin took place only two months after his injury. But then I do not know her story.
If the law were changed, if consent were required and properly given both by the doctors treating Miles and by us, his family, then Miles could be released without dilemma, helped by his doctor as he should be and allowed to go gracefully and painlessly. It is what he wants, but it cannot happen. Perhaps in fifty, a hundred, years’ time we will have learnt to accept death when it is necessary, instead of keeping it in abeyance at all costs.
VI
It is the Easter weekend and spring has come early. How blithely the year comes round without Ron, the new buds and growth disconcerting in their tenderness. We bring Miles home on Good Friday and, wheeling him out into the garden, we set his chair in the shade and draw up the deckchairs alongside him in the sun for ourselves. How glad I am the children are all here, books and newspapers piled next to us on the grass and the peace of this garden behind its high walls, all luxuries to be savoured. But Miles is uncomfortable and tetchy, coughing more than usual and finding it difficult to clear his throat. I fetch the hated suction machine, drawing out the phlegm from his mouth and the back of his throat and watch it fill the machine’s container. As I stand over him my mind wanders back and I think about how at the beginning Miles would obstruct us, biting the hard end of the tube and not letting go, and then suddenly, today, as he looks up at me with the helpless passivity with which he now allows us to do this thing, it is too much to bear. Stopping the machine I put away the tube and bend down and put my arms around him to bury my face in the curve of his neck as the familiar wave of pain engulfs me. When it begins to ebb away I realise Claudia has left what she was doing and is here too, her arms around us both in a silent embrace. Miles is starting to cough again so we move and I resume the suctioning. You’re a darling, I say to Claudia. My back aches slightly; hugging Miles when he is in his wheelchair is never comfortable, you have to bend forward in such a way that the small of the back takes all your weight and I’ve never found how to solve the problem.