Helen

Brief Outline:

Helen is 57, she had one daughter and twin sons. In 2006, her sixteen-year old twin-sons were involved in a car crash – which left one, Christopher, in a coma. He was placed on a ventilator and underwent a craniotomy. Helen was told within days that he was very unlikely ever to recover. The consultant who operated on him commented: “we threw everything at him, including the kitchen sink, maybe we shouldn’t have”.

Background:

In 2006, at the age of 16, Helen’s son, Christopher, was severely injured in a car accident. He was eventually diagnosed as being in a permanent vegetative state and died after the withdrawal of artificial nutrition and hydration in 2010.

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At first Helen was in shock, and could not believe that her son was not coming back to her. She was determined that with enough love, care and faith he would make a meaningful recovery. After difficulties with one care home and incidents of poor care Helen eventually moved her son into an excellent care home where he received very skilled and compassionate care. But in spite of some initial signs of progress, Christopher went backwards rather than progressing and over time hope faded. Christopher had convulsions, bouts of MRSA and recurrent lung and urinary tract infections. Helen does not believe her son would have wanted to live like this – in a “twilight” world where he could not communicate and where the only response he gave appeared to be reacting to pain. She says: “such a lonely existence would have been terrifying for a loving and complex individual”. Living on red alert for years was also draining and exhausting for the whole family.

When she first heard of the possibility of withdrawing Christopher’s nutrition and hydration Helen dismissed this: “My first reaction was, I’m not that sort of person”. The family was also given misinformation which profoundly distressed them all. However, her feeling was that “if nature took its course he would have died a long time ago” and eventually she made enquiries about the possibility of withdrawing his feeding tube. It was important to her that the ultimate responsibility for any decision lay with the court. She remembers being comforted by her barrister telling her: “you’re asking the question of the court. … You’re not deciding to end your son’s life, the judge and the court will make that decision”. She says: “I felt as if a burden had been lifted then”. 

In 2010 the Court of Protection declared that it was lawful and in Christopher’s best interests to have artificial nutrition and hydration withdrawn. Helen witnessed the excellent palliative care Christopher received in his last days and believes he was able to die with grace and dignity, and that he is now, finally, at peace. Helen is keen to share her experience in the hope that it may help others think about the options and do whatever is right for them and their family.

Helen has seen a range of care homes – and emphasises the importance of the quality of the staff, rather than the buildings.

So, care homes, can you say a bit about your experience of care homes?

Yes. I think care homes are like schools. There are some really good ones and there are some real shockers around. And the ones that you finish up dealing with, very often it’s a matter of luck. Christopher was nursed in two care homes. One was modern, bright, it had all the state of the art rehab equipment. But both the staff and the management didn’t really care. And that made talking to them extremely difficult because they were either offensive or aggressive, whatever was said. And it almost meant that simple things like hygiene or the placement of his wheelchair or whether the sun was in his eyes or not, none of those were factored into his care. And we couldn’t talk to either his principal carer or the matron or the management because they didn’t want to know. 

The second care home he was in was a converted Edwardian house. With all the problems that that involved: small kitchens, antiquated plumbing, high ceilings, the drafts whistled in all sorts of places. But the staff were absolutely top hole. They cared. And I think any care home is only going to be as good as the carers working in it. And if you have a problem and the manager of the care home says to you, “Right, well, we’ll discuss that at the review meeting in a fortnight, now if you don’t mind I’ve got a teleconference.” [Makes whooshing noise] It’s completely different to the manager patting your hand and saying, “Oh dear, come on, I’ll put the kettle on and you can tell me about it.” And at the end of the meeting saying, “Look dear, if you’re worried just pick up the phone any time, somebody is here twenty-four hours a day. If you can't sleep, call us.” You probably won't feel the need, but just knowing you can do it. 

Helen says that being able to cuddle her son in his vegetative state, gave her comfort – but she came to feel that such comfort came at too high a cost.

For so long the only thing that enabled me to cope was telling myself that, all right, he was injured but he was still alive, he was still there. And I’ve gone on record as saying I used to go into his room and sit by his bed and bury my nose in his blonde curly hair and just sniff it. Because he felt like my son and he smelt like my son, and I could hold my warm, living boy in my arms. …And things changed, the day I had to ask myself if the maternal comfort I was getting from that was worth the price that my son was having to pay to provide it for me. …And that is a tough question to ask and the answer doesn’t come easily. 

Eventually Helen’s hope for her son’s recovery was replaced by hope that the rest of the family might be able to ‘get on with living’.

Hope. Hope is key. Because the minute you get so tired and so overwhelmed that you can't see the hope in the situation is when you enter a downward spiral which takes an awful lot of energy and very often the help of your GP to overcome. First of all, I found I had to have hope that Christopher would first of all survive. And secondly, recover to such an extent that he could have some quality of life. And it was that hope that kept us going over the first couple of years. And then when that hope was finally lost and the family struggled for quite some while, it then dawned on us that although hope was lost for Christopher there was hope for us, for us. And that is what he would have wanted for us. That we could – we could hopefully remove him from a situation of emptiness, loneliness and pain. And that we could, hopefully, lay him to rest, think of him with love, and then move on to a life where he was remembered with so much love and so much affection and gratitude. And we could get on… with living. 

Helen now knows what the whole family would want.

Sex, drugs and rock and roll at every turn, but mention death and everybody gets hysterical. 

And why is it important to talk about death?

I think if it’s something that is part of your life, if it’s a reality you’re going to have to face sooner rather than later, pushing it under the carpet isn’t going to help. Information is important.

Have you – have you thought about your own end of life wishes and what you would want if you were ever—

Oh yes.

Serious, seriously brain injured. Oh, she says enthuse—

[Laughs] Do you know, the whole family has. It only has to happen once and everybody goes back to the drawing board and thinks, “what would I want if it were me?” And I know exactly what all of the family would want, and they know exactly what I would want. So there’s, there’s no misunderstanding [laughs].

And would any of you want to be kept alive in Christopher’s state?

No.

Helen, like some other people we spoke to, initially resisted the idea of withdrawing artificial nutrition and hydration from her son – but came to reassess this.

And when you first heard about the possibility of withdrawing artificial nutrition and hydration, how did that – what was your reaction to that as a first idea, when you first—

I thought that might be fine for other people but there’s no way I would even consider that. And then about twelve months later I’d seen him through several nightmare urinary tract infections. I’d watched him lose weight. I’d watched his skin start to break down. I’d seen him in pain. I’d seen the splints that he’d got on his hands start to cut into his wrists. And just the general wear and tear of intensive and invasive nursing practice began to tell on his overall physical health. And it was at that point I started to reassess. His father started to reassess the situation. And so did his brother and sister. 

After some initial challenges, Helen found the legal procedure was robust and it was helpful to know that the final decision was not her responsibility. She explains what happened in her case, and offers advice to other families.

When we took the decision that we would consider the option of ending Christopher’s life, it was done so knowing him as well as we did, that is what he would have wanted. 

The first thing I think that any family needs to do is to talk to those who are caring for their loved one. And just get a sense of what they feel the medical situation is, what the long-term prognosis is, and actually what their personal views are, because that will affect your journey. Armed with that information, I then wrote to the Area Health Authority and asked them to consult the Primary Care Trust solicitor. And then, once it had been decided that this was something that they were prepared to consider and to work with us to do, they then collated all of my son’s medical records from every hospital that had treated him. So that they could get a full picture of really how desperate the situation was. The medical records all added up and they could see that this young man was not going to recover. And the costs of keeping him alive were going to be very high, financially and emotionally for everybody involved. 

And for us that was the thing, Christopher’s care kept him alive. He wasn’t living independently. He was being kept alive artificially. And we knew that if nature took its course he would have died a long time ago. And what is natural and right was actually quite comforting, it was reassuring for us. 

We were told when the idea was first broached that what would kill him if we followed the withdrawal of feeding and hydration route was organ collapse due to lack of fluid. That would be the main thing; and it would be very painful and agonising and no painkiller could touch it and he would die in agony. And that broke our hearts for weeks. 

So we put the whole process on hold for weeks while we actually took a deep breath, mopped the tears and thought, no, before we make this decision, let’s do a little bit more research and talk to some people who have real expertise in this field. And they were able to reassure us that modern painkillers are well able to deal with the distress caused by organ failure. And painkillers are always given very generously in cases like this, that morphine pumps are very efficient. And to be honest, Christopher lost no weight at all. His hands remained the same, his face remained the same. The only thing that changed was that he slept more. That was the only thing.

Like most people as a family we really struggled with guilt at even thinking about ending Christopher’s life. And my barrister was aware of this and he took me on one side one day, over a mug of tea, and he said, “Do you realise what you’re actually doing here?” And I said, “Yes, I’m following a process to end my son’s life.” And he said, “No, you’re not.” And I said, “Aren't I?” And he said, “No”… “All you’re doing is you’re asking the question of the court. The court will then say; yes this is a permissible course of action, or; no, this isn’t right. You’re not deciding to end your son’s life, the judge and the court will make that decision.” And I felt as if a burden had been lifted then.

Sometimes I wish I could, I could just close the door and allow myself to forget for a few days that it ever happened. But one thing that made it all of any sense to us, not just me but his twin brother, his sister and his grandparents, was that Christopher’s life shouldn’t have been lost for nothing. And if it can help other families to look after themselves during the long, drawn out nursing process. If it can help other families be open minded about whether they seek to end the life or not. Both options are equally valid, because every family is different, every patient’s different. But if it can allow people to think with an open mind and an open heart and then possibly, possibly tackle the process of ending a loved one’s life with the confidence that it is the right thing. They’re not wicked, they’re not cruel, it doesn’t prove that they, they no longer love the patient, then it’s worth doing.

Helen describes her son’s death after his feeding tube was withdrawn as peaceful, calm and dignified.

When we got the phone call to say that Christopher has passed away, I scooped up my son and my daughter and we went straight over. And he was lying in his room in a freshly made bed, in his favourite t-shirt. He’d got a cuddly toy in each hand and an arrangement of flowers on his bedside table. And there was such a wonderful air of calm and peace in that room. It was almost as if a long and hard fought battle was over. …And everybody was relaxing. And I had dreaded seeing Christopher dead. But he was my boy, but without the stress and the tension and the fear that was tightening the muscles in his face. He – for the first time in years he looked as if he was peacefully asleep. 

So in the end seeing him dead was not as heart breaking or disturbing as you’d thought, after all those years of him being in a vegetative state?

No, he finally looked peaceful. And he hadn’t looked peaceful before. It’s the difference between seeing a child asleep while it’s having a nightmare and a child asleep resting peacefully. It’s just the look of the face. 

So the eye opening turned to more of eye closing and—

Yes.

Yeah.

Yes. I thought that he slept his way towards his death. My daughter, who’s quite robust, said that probably he’d got so many drugs inside him he was as high as a kite [laughs]. But certainly Christopher’s nursing, as he went towards his death, was far calmer, and his life was far calmer and far more peaceful and far more dignified than when he was being actively nursed. Which I thought was interesting, and I wouldn’t have believed that if I’d not gone through the process. 

Helen told us about the choice of gravestone for her son and the importance to being able to remember her son with happiness.

And I was very moved by the gravestone you’d chosen for him, you showed a picture?

Oh yes.

Can you tell me a bit about the choice of that – those, that wording?

Okay. For most people when they die on their epitaph you have when they were born and when they die. There’s no question, those are immovable. But for Christopher it was different. He was born on the seventh of September. He lost his life on the thirtieth of April. And he was finally at peace on the twenty-first of December. An awful lot of people don’t have that interregnum between the loss of life and being at peace. But he did. And it struck me important that they were each marked.

So there were many years between when he lost his life and when he was at peace?

Yes. But he is at peace now. Which makes it possible for us to take a deep breath and move on. And that perhaps is the biggest gift that he left for us. That we knew that he would want us to recover and remember him with happiness and remember the good times, and not to have our life overshadowed by on-going infections, hospital visits, problems with splints and everything else. But that we should actually get our own proper normal lives back to a degree. 

Her son’s funeral was a lovely occasion, and Helen had the strong sense that her son was there with her.

His funeral was lovely. We used to live in a rather beautiful village and the old Norman Church was literally just over the road from our house. And the vicar very kindly allowed us, even though we no longer lived in the parish, to have his funeral there and for him to be buried in the churchyard. My father was a church organist. He can't see anymore and arthritis has completely written off his fingers, but he got the music out because he said that he wasn’t going to let anybody else play for his boy’s funeral. And the country had been gridlocked by snow but people made it from Cornwall, they made it from the Lake District, they made it from Yorkshire. And we’d ordered him a wicker coffin. And the night before his funeral my mother and I went to the chapel of rest with a big, big basketful of Christmas greenery, holly, ivy, bay, Christmas roses, all sorts of things. And the funeral director brought us a large pot of tea and we had the lid off the coffin and we literally wove these Christmas greens through his, through his coffin, so that it was covered in flowers and greenery the following morning as it went into church. And we had his favourite music and we had his favourite readings. And he went out of church to a piece by Andrew Lloyd Weber from his, musical ‘Starlight Express’. And the words to that were, ‘if only you use the power within you, you can stop the rain and turn the tide.’ And that was just so much his attitude to life. And we stood in the snow, at his graveside and we all threw in a red rose for him, because his house flower at school was the red rose, he had to wear one on his lapel every speech day. 

And then we went to the nearest hotel and everybody took their wet shoes off… and we had obscene amounts of hot chocolate and toasted sandwiches and chocolate cake and we wished him well on his journey. And he was there with us, no question, he was there. 

Helen would like to see a wide spread changes in policies and social attitudes.

If there was one message you wanted to give out to policy makers or law makers – what would that message be?

Oh, my goodness. I think it would be this. The world’s changing and medical science is changing. A hundred and fifty years ago it was considered ethically unsound to give a woman an anaesthetic in childbirth, but we’ve moved on. Fifty years ago, if someone was dying it was considered ethically unsound to tell them, we’ve moved on. And we’ve moved on again. To live in a permanent vegetative state is no life for the patient and it’s no life for the family. And I do think that as a civilised society we do need to be able to offer families alternative solutions to watching a loved one suffer without hope, year in and year out. As an educated and civilised society we deserve to do better than that for our people.