Why I support Dignity in Dying

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’s story

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.

Today, the High Court has rejected Noel’s bid to have the choice to end his own life legally and on his own terms.

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.

Dignity in Dying Ian McKewan

Dignity in Dying Jo Brand

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.

Dignity in Dying Sandy

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.

Thanks, as always, for reading. x

11 thoughts on “Why I support Dignity in Dying

  1. WhatLydDid says:

    The tears were absolutely pouring as I read this. Tears of compassion, sadness, fury. His GP surgery ‘couldn’t condone it’? I obviously wouldn’t wish cancer or terminal illness on anyone, but I do wonder how quickly they would have changed their minds if they had experienced his situation for just five minutes.

    I am so sorry that your dad did not receive the support, respect, and autonomy he received. Your support must have meant the absolute world to him, and I am so glad that he had family who loved him enough to go through every step of the fight with him, and be with him at the end.

    I couldn’t respect you more for sharing your story and educating people on exactly how the process works. Even as a huge supporter of dignity in dying, there were things I was unaware of. It’s a brilliant tribute, and I really hope that your writing can at least persuade people to think deeper if they are in any way against the movement.

    • This, tatt and the other says:

      Thank you so much for your kind words. It’s heartbreaking that my Dad’s case isn’t an uncommon one. There are people across the country and the world who would benefit from a change in the law and it’s wrong that by wanting control they’re viewed upon as criminals.

  2. Bethany Jane says:

    Thank you so, so much for writing this incredibly moving and powerful post. I’m crying as I write this because it’s just so unfair, and I am so frustrated by it. Your father’s story broke my heart, honestly. The way he, and so many others, have been treated is just cruelty under the guise of ‘compassion’, but the only people it’s protecting are medical professionals and their careers. There is no humanity in it.

    My nan suffered from Alzheimer’s Disease, and she was in a very bad way by the time she died. For years, she’d been unable to comprehend anything, and unable to speak. It makes me angry that she was just kept in a room to waste away, something she would never have wanted. My poor grandad had to watch the woman he loved become a shell. It’s just horrific.

    I truly hope that one day soon we will have the ability to make these decisions for ourselves. We need to do better for people who are at the end of their lives.

    Beth xx

    • This, tatt and the other says:

      Thank you sweetheart. That means a lot.

      The law around Alzheimer’s patients is a lot more complex. By the time they’re too poorly to benefit from assisted dying, they’re too poorly to request it either. Sadly my Dad’s wife, having gone through all that with my Dad, is now watching her own Dad deteriorate with Alzheimer’s and Parkinson’s disease. He’s so far from the man he was, or would want to be, but too far mentally removed from responsibility to be able to make any decision around his future. Sadly he’ll just deteriorate slowly until the end.

      Thank you again for reading our story. I hope we’ll make legal progress in 2018.

      • Christine Benjamin-Young says:

        That was exactly the same story for my beloved parents and probably thousands of others. Care homes, even where they do their absolute best, cannot halt, the terrible to witness, deterioration of our loved ones.. Mum had Alzeihmers and a poor heart and eventually died in the care home where dad also chose to live with her, as he could not bear to be apart, despite her no longer recognising him as the love of her life for almost 63 years. He died the day she did inside, but his strong heart kept him going for another almost 7 years despite his own illness of Prostate Cancer and Parkinsons. He had moments of pleasure Im sure but his life became a huge burden to him without the love of his life and his own illnesses. For the last 18months or more, he could not speak, became bedridden, had long been doubly incontinent, did not recognise his family and could not even turn over in bed ,feed himself or even scratch his nose if it itched. No quality of life, really just a living death. In the end he could not swallow and effectively choked and drowned in his own secretions. The last days of his life the District Nurse refused to give him morphine to ease his distress because she didn’t think he was agitated enough. My God I wish I had been able to be there to advocate for him. My sister was too close and had been bearing the brunt of witnessing his deterioration for too long. I live in Australia and so was spared the physical witness of the worst of it. Dad had always been an independent man, looking after everyone. He did not know what was happening to him but I know he would have taken his own life if he could. Surely he deserved a kinder end, a more compassionate end to his life. It is not just those who have cancer or other diseases who suffer, many, like my mum and dad, are not in a fit state to ask for a release by the time they really need to. We must make sure that people like them can have the right to an assisted death too. This problem is only going to get worse as the ageing generation of Baby Boomers have increasingly failing health and disease. Let’s give people the right to choose when it is their time to go if that is what they want and need. Having the right to die with dignity will give us the right to live without fear, free of unendurable suffering and mental anguish until you no longer can.

        • This, tatt and the other says:

          I’m so sorry to hear what you went through, and indeed your parents too. I think you’re right about extending assisted dying to people who physically cannot ask for it themselves; we generally know our own family and know whether or not they would want what is merely an existence. Of course this may be open to being taken advantage of by unscrupulous family members, so would need to be much more stringently controlled by law.

          If we can get the law changed to allow assisted dying in terminally ill patients first, then hopefully more legislation may follow in the future.

          Thank you so much for sharing your story.

  3. Mrs W E Badman says:

    I absolutely agree with everything you have said Jo. A vet would say it’s not fair to let an animal suffer and it would be best to let it go peacefully, so why can’t we be allowed to do the same!!!

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