I haven’t posted about assisted dying for a while.
OK, so I haven’t posted much of anything for a while, but let’s gloss over that!
Like many supporters of
, and believers in a change in the law to allow terminally ill people autonomy over their death, I was gutted when Noel Conway’s latest legal battle was unsuccessful in November.
Noel has been an unending powerhouse in fighting for a change in the law. Suffering with Motor Neurone disease, and wanting the assurance that he can end his own life when the disease becomes too much for him to bear, he has been through court cases and appeals, all with the support of Dignity in Dying. In November the Supreme Court – the highest in the UK – ruled that he could not appeal against an earlier ruling that he could end his life by assisted suicide at such time he deemed fit.
This leaves Noel in the situation of either waiting for his disease to kill him; a slow, dignity stripping and painful end, or seeking an assisted death elsewhere. The current choice of destination for Brits wanting to end their own life on their own terms is Dignitas in Switzerland.
If you’ve followed my blog for a while you’ll know that my Dad wanted the option to travel to there rather than be ravaged by a late stage diagnosis of prostate cancer. What he actually wanted, underneath all of that, was what many terminally ill people want – the choice to end their life on their own terms, in their own home with their family around them, With that not being an option, Dignitas was the next best thing for him. Unfortunately his GP blocked the necessary paperwork he needed, on legal and ethical grounds, leaving Dad to face the very end that scared him most.
Fast forward then to this week, and the heartbreaking case of Geoff Whaley and his family. Geoff too had motor neurone disease, like Noel Conway. Geoff feared the disease taking away any sense of living in his final months. Being alive is so different to living, and that wasn’t what Geoff wanted. So he made plans to travel to Dignitas and have control over his death.
I did not fear death, but I did fear the journey. When I eventually got the ‘green light’ from Dignitas, a weight lifted; I was able to get on with living without the constant mental anguish over my death.
This is the key for so many people who want the choice of assisted death. Fear hangs over them and overtakes every day – days when they could be making the most of the time they have left. My Dad was a living example of this; he was consumed by wondering how ill he would get. Would the cancer take his mobility? Would he end up bedbound? Unable to go to the bathroom? Would his death be everything he didn’t want it to be?
Horribly, for Geoff and his family, someone made an anonymous phonecall to the authorities to alert them to his plan. Imagine involving the law in a dying man’s wishes? Imagine the selfishness and self-centredness that would lead you to try and turn a dying man and his family into criminals?
Because that’s one of the major issues here. Anyone who assists a person to make their way to Dignitas and end their life can face a criminal investigation and up to 14 years in prison. Geoff’s wife had made the arrangements for him because his disease had already stripped him of the use of his hands to make the calls and send the emails himself.
Thankfully, although a small mercy, the police decided not to proceed with any criminal charges. That doesn’t excuse the fact that Geoff’s final weeks were blighted by the threat of investigation and criminal charges against his family.
Geoff travelled to Switzerland with his wife, children and close friends. He ended his life independently by drinking a cup of water laced with barbiturates.
Tellingly, his wife Ann said:
I wish the law let me have him for longer.
Geoff, like so many others, had to end his life earlier than he may have wanted to because of logistics. He had to be well enough to travel to Switzerland. Had the UK law been different, Geoff would not have had to expedite his death for fear of missing the opportunity.
In a last show of strength, Geoff wrote an open letter to MPs. In it, he implores them to consider the real effects of the law on real people and real families.
No family should ever have to endure the torment we have undergone in recent weeks.
The reason that people like Geoff and Noel fight the fight is not for themselves. It’s for the future of other people who might find themselves in such a position. And their fight isn’t without results.
Change of heart
Although every assisted dying bill has so far been overruled in the House of Commons – the most recent being the bill brought forward by Lord Falconer in 2015, the tide is turning. Some MPs are becoming vocal in their support for a change in the law. Lib Dem leader Vince Cable, who I listened to in Parliament last January as he spoke of the potential for an assisted dying law to be exploited, and therefore his inability to support it, has now come out with a very different view.
He concedes that, with safeguards in place, assisted dying could be a viable legal option for terminally ill people. He has publicly gone on record as saying he is now in support of looking at the law surrounding the controversial topic.
There’s still much to be done. Change won’t come overnight, and nor should it. But the fact that high profile cases such as Geoff’s are making politician’s think more about the situation and how they themselves might want to proceed with the same circumstances can only be a good thing.
Last night, as we settled into bed, we saw the terribly sad news that a friend of ours had passed away. Chris had cancer. He died because of cancer.
But cancer did not beat Chris, and he didn’t lose the battle.
Sure, it’s only terminology, just words. But for the people left behind, experiencing the death and pain and emptiness, it’s important. At least it was to me, when my Dad died. I hate that anyone might think my Dad “lost”. That he didn’t fight hard enough, or long enough.
I’ll never forget the day my Dad asked me if I’d heard of Dignitas. It was about a year after his inoperable cancer diagnosis and we were sitting in his lounge one Saturday afternoon. He’d told me before I got there that he wanted to talk to me about some things, and I knew it would be related to his illness. He’d started off with discussing his will, so I was already crying by the time he mentioned the assisted dying clinic in Switzerland. I knew it wasn’t just idle conversation.
My Dad was very very scared of how he would die from cancer. I’m sure he was afraid of dying too, but his main focus was the how; what would happen to his body in the lead up to the end. Effects of prostate cancer include spinal cord compression – when the active tumours press on your spinal cord leading to limited mobility or, in some cases, paralysis. He was consumed with the idea that this might happen to him. That his final days or weeks might be spent confined to bed, relying solely on others to clean and feed him. It wasn’t how he wanted his life to end.
By the time he brought up the subject with me he’d already started looking into it. He’d been in touch with Dignitas to find out the process for being accepted at the clinic. Contrary to somewhat popular belief, their services aren’t open to just anyone. It’s not enough to feel you’re done with life and want to end it all. They ask for recent medical proof of your condition and, if possible, a prognosis. They’re not in the business of helping healthy people to die. They’re there to provide a much needed choice; a dignified end for people who want to control how and when they die, and at what stage in their deterioration. For people like my Dad who don’t want to face the end in potential pain; losing their independence and dignity as their illness ravages their body.
We discussed the logistics of it; how he would want his wife and I to fly with him to Switzerland. How he would need to be there for a couple of days prior to his chosen end date in order to be seen by medical professionals and psychiatric assessors. How he could change his mind at any time. How the clinic would help with arrangements around accommodation and restaurants and things to do in the days prior. How, on the chosen day, he would self administer a lethal amount of liquid barbiturate which would send him into what looks like a deep sleep, while his wife and I were there with him, holding his hand and able to say our goodbyes. How, after around 30 minutes, his organs would slow and eventually shut down completely. How his body would be cremated in Switzerland. How it might be difficult to repatriate his ashes into the UK because of the legalities around assisted dying, and how he understood. Whether he would tell family and friends in advance. Whether we would bring his belongings home, after we flew out to Switzerland as three people, and came back as two.
It was heartbreaking.
But, that said, I completely understood. And I completely supported him.
You see, my Dad never recovered from his inoperable cancer diagnosis. I don’t mean physically, that was an impossibility. But mentally he was never able to put it to the back of his mind. Although he went on holidays and did stuff while he still could, he never had that “fuck you cancer” mentality. It was pretty much all he spoke about. And that’s an exhausting way to live. From the time he was diagnosed he became obsessed with how long he had left to live, and what that time would be like. And, the more he found out about how bad things could become, the less he wanted to let nature take it’s course.
My Dad didn’t make it to Dignitas. He made the mistake of asking his GP for his medical records, so he could send them away as per the rules of the Swiss clinic. His GP asked him why he wanted them; almost goading him into telling him why. So my Dad told him. And his GP said he would have to consult the practice legal team, who advised that they couldn’t condone ending his life in that way, so he had to mark my Dad’s medical files as a potential suicide case with strict instructions not to release his files to him.
Dad was angry. Incredibly angry. He felt he’d been tricked and blamed the GP. He sought out charities and organisations and individuals who may have been able to help. He applied for his hospital records in the hope that they weren’t marked up with his intentions. But it proved just too difficult to get the information he needed quickly enough. Dignitas required recent medical records, and by the time the hospital processed the request they were already out of date for his needs.
During that fateful GP appointment, his doctor spoke very highly of the palliative care services available in the UK. Palliative care is end of life care. Pre-death care. The intention is to make sure that people with terminal illnesses are comfortable, not in pain and not suffering. There are Macmillan nurses and hospice workers who dedicate their life to looking after people with cancer, and they do a magnificent job. But what about the mental pain? The fear and the anguish of what’s to come? You can’t treat that with a morphine injection and a comfortable bed.
Palliative care 100% has a place in the NHS, I strongly believe that. But it shouldn’t be the only option.
When my Dad was given a timescale on his illness, towards the end, his obsession with what was to come became even worse. The team from Macmillan told him he had about 4-6 weeks left to live. He was too poorly to do anything, to weak to go out, too uncomfortable to share his marital bed, too ill to enjoy food or even eat. He lost a lot of weight, needed sticks just to get around at home and was regularly physically sick. Hew was also in immense amounts of pain, because the team supporting him were struggling to get the balance of medication right. The palliative care team the doctor had spoken so highly of; who were supposed to be a real and equal option to that of Dignitas. He had no quality of life, and still continued to fear worse to come; that he would be paralysed before his body gave up. He didn’t want to have to have a bed in his lounge and be unable to live the life he had previously there. He made the difficult decision to be transferred to a hospice for specialist care.
My Dad never made it to the hospice. He had a suspected stroke in the early hours of the morning he was due to be transported there by ambulance. He was rushed to A&E where he was convulsing and writhing in suspected pain. After the amazing hospital staff managed to get him comfortable, he was transferred to a private room in a ward where we knew he would see out his last hours. He never regained consciousness but all of his family were around him for the whole day and into the night, where he died not long before 11pm. We were, thank god, able to say our goodbyes. It was, in a way, the best thing that could have happened. Had he survived another 4 weeks, as diagnosed by the cancer specialists, he would have suffered an incredible amount, lost even more weight, been even more poorly and perhaps even have become paralysed as he feared. He’d have been in a hospice, away from home, waiting to die. And that just isn’t acceptable as the only option.
Imagine how much better he could have coped from the time of diagnosis until the inevitable end if he knew that he didn’t have to face the very worst that the illness could throw at him? That he could know in his own mind when enough was enough, and end his life on his terms? Because that’s the other issue with Dignitas. You need to be well enough to make the journey, and physically able to take the barbiturate. People who do make it to Dignitas often have to choose an end date in advance of what they would if assisted dying was an option in the UK, because they need to be sure they’re capable of getting there. They need to book flights and accommodation. They need to choose an end well in advance, without knowing if they’ll definitely feel desperately ill enough by that point. People are potentially cutting their lives shorter than they need to because of our archaic laws here in the UK.
It’s also bloody expensive, so not a valid option for everyone.
This is where Dignity in Dying comes in. They’re a charity who’s focus is to change the law in the UK around assisted dying; to make it possible for people with a terminal illness and a doctor’s diagnosis to choose when to die, in their own home or place of their choice, with their family and friends around them. For people to do it on their terms. Not to have to slink off like criminals. Not to have to worry whether their loved ones who have helped or accompanied them will face legal repercussions back in the UK. Not to fear undeterminable pain, potential paralysis, loss of bowel control, loss of appetite, sickness and god knows what else while they’re waiting to die. We aren’t talking about families pushing vulnerable people to end their life so as not to be a financial or literal burden. We’re talking about people for whom there is no hope of getting better, only the reality of getting worse. People who want to control their own destiny and make their own decision on when enough is enough. People who, understandably, don’t want their final days to be full of pain and suffering; people who don’t want to potentially die alone in hospital; people who want choice. Not inevitability. Not that sense of having to give in and accept their fate. The power to say enough is enough.
I know it’s said so many times by people who support the right to assisted dying, but we wouldn’t allow animals to suffer the way we allow humans to. I recently read a comment on a Dignity in Dying Facebook post, which said a terminally ill person would probably be better off going to a vet than a doctor. You can see the point. If an animal is poorly we do “the kindest thing”. It’s an accepted part of a humane society and an accepted part of being a pet owner. It’s allowable by law. Why then are people with cancer who can no longer eat or drink towards the end, due to the illness, allowed to essentially dehydrate and starve for days until their body finally gives up? Why are people with neurological diseases allowed to become prisoners in their own body, as their muscular responses cease to function, with death the only hope of respite?
Noel Conway was diagnosed with Motor Neurone Disease (MND) in November 2014. Prior to his illness he’d worked in education and been incredibly active; hiking the Shropshire countryside around his home and skiing in Europe. His illness put a stop not only to that, but to any independence of life. He can now no longer walk, has difficulty breathing and has to be hoisted from his bed to a chair. He knows he’s in the latter stages of the illness, and his time is limited. Noel’s illness is terminal and he has naturally started to focus on the end of his life, which he would like to be on his terms. So, in an incredibly brave and dedicated act, Noel became involved with Dignity in Dying; using his own experiences and position to lobby for a change in the law in the UK.
In a better, more advanced, more compassionate country, Noel could make the most of the last months of his life in the small ways he can still create enjoyment; safe in the knowledge that when he knows that the time is right for him, he could call on a doctor to help him die in his own home with family and friends around him. Of course that time may not come. Noel may decide that he wants nature to take it’s course. The key word here is choice. Noel wants the choice to be available to him. Instead, because of archaic British laws which the UK Parliament are too scared to review – in spite of overwhelming support from the British public – Noel has spent his dying months in a legal battle which he’s taken all the way to the High Court.
In true Noel spirit, he and his legal team are already looking into the appeal process, on the basis that the 1961 suicide act – which prevents assisted dying in the UK – is incompatible with human rights legislation. Dignity in Dying will, of course, support Noel in his appeal.
Assisted dying in California – Betsy Davis
In November of last year, Betsy Davis – a 41 year old artist also dying from MND (or, more specifically, ALS which is the most common form of MND and also the type that Noel Conway has) held a party at a Californian ranch, surrounded by 30 friends. There was music, laughter, shared stories and memories. At the end of the weekend, she was wheeled out in her bed to watch the sunset and ingest a legally prescribed cocktail of drugs which slowed down her organs until she passed away peacefully. The assisted dying law had only been in force in California for a month.
What a difference this law made for Betsy. Her fear at living the last months of her life entombed in her own body, being fed through a tube and being completely reliant on others for every day care was replaced by a sense of purpose to organise her own exit; to spend her last days and hours how she wanted to, to end her life on a high note created at her own will, rather than in potential excruciating physical pain, and certainly mental anguish.
Support for a change in the law
There is a lot of support for a change in the law; not just from the general public but from people in the public eye.
The former Archbishop of Canterbury, George Carey, has come out in support of choice.
Archbishop Desmond Tutu also calls for choice, and for that choice to be respected.
Now, if men of the cloth can understand the need for a change in the law, when religion is at the very heart of some people’s objection to assisted dying, why can politicians not see the need for change?
This image of Sandy, for me, sums it up.
It certainly would have helped my Dad, it would help Noel Conway, and it would help thousands of people both now and in the future. We’re forced to take responsibility for how we live our lives. Let’s be granted the responsibility for how we choose to die, too.