When I went to a Dignity in Dying meeting in Parliament back in January, it was quite clear from the MPs who attended that there’s still a hell of a lot of misconception about what the charity and it’s supporters (myself included) are fighting for. On that basis it’s clear that, when there is another vote on the issue in Parliament (as there was in 2015), those MPs won’t understand what they’re voting for, which will obviously affect the outcome.
To be clear, Dignity in Dying are fighting for a change in the law that allows mentally competent, terminally ill people with less than 6 months to live, the legal right to end their life in the UK with medical assistance. Mental competence would be assessed by an independent psychiatric professional. This would end the need for people to travel to Dignitas in Switzerland or other countries and organisations where assisted dying is currently legal. It would mean that people could die at home, in comfort, surrounded by family. It would mean they didn’t have to skulk away like criminals and worry that anyone who had helped them to make the journey overseas may face prosecution.
My Dad’s wife’s MP is Tom Watson, Member for West Bromwich East and Deputy Leader of the Labour Party. He didn’t vote in favour of changing the assisted dying law in the last vote three years ago. As a constituent, she and another local resident Jim, who took his partner to Dignitas because the UK law didn’t allow her to end her life in her home country, requested a meeting with him to discuss the issue. They both shared their stories and experiences with him, and presented him with the latest research from Dignity in Dying.
Mr Watson was very moved by both of their stories, and surprised at the difference in treatment at the hands of their doctors (Dad’s doctor refused to give hi the paperwork he needed to be accepted by Dignitas on legal grounds, whereas Jim’s partner’s doctor helped them to collate everything they needed. Ironically they were both under the same GP surgery). He was visibly emotional and his opinion of assisted dying changed during that meeting. He pledged to publicly declare his support.
True to his word, Mr Watson was interviewed by the Daily Mirror newspaper, and an article was published this weekend. He acknowledges that meeting with my Dad’s wife and Jim changed his opinion, and has gone on record as saying the law needs to change
I’m sharing this message to prove that you, me, all of us, can make a difference. Not just specifically to Dignity in Dying, but with anything you feel passionately about. Maybe your MP is like Tom Watson – doesn’t understand your issue or has never really given it any thought. Maybe the thing that you want changing has never been on their agenda. Maybe you’re the person to make them understand and make them think about it.
I’ll be honest, I don’t know an awful lot about Stephen Hawking. I know that he was an incredibly intelligent man with a capacity for knowledge, analysis, understanding and comprehending the world and the universe that most people will never come close to. I know that he never allowed himself to be defined by his disability, and overcame physical limitations to be able to share his incredible brain power.
But, in the wake of his recent death, these are the things about Stephen Hawking that resonated and will stay with me.
This. Always this. Never stop learning, questioning, reading and wanting to know more.
If one of the most intelligent men of our time can understand the need for assisted dying, and the need for the taboo and secrecy behind it to stop, then why can’t our government?
I would suggest that they adhere to the first quote and read more about the process, the people involved, public opinion, and the heartache of individuals and families denied the right to choose death instead of prolonged terminal suffering.
If you’ve read this blog for a while, you’ll know that I’m vocal in my support for changing the UK law to allow assisted dying. Through that support and the blog post I initially wrote around it, I’ve been in contact with Dignity in Dying, who fight tirelessly to help change the law, and last week they invited me to attend a meeting in the House of Commons where they would be presenting their latest research. I jumped at the opportunity because it’s something I feel so passionate about, and I was keen to see how their findings would be received by the meeting attendees, including research assistants and Members of Parliament.
I’ve been to the Houses of Parliament many years ago, on a school trip, although the security is (understandably) a lot tighter these days. It’s still a very impressive building, even second time around; it must be strange for somewhere so grand to be your place of work. There’s currently a lot of structural work happening as the building is showing signs of decline (not surprising, considering it’s age) but the amount of artwork, gold leaf and carved stone inside is very impressive.
The meeting was to be split into two halves – the first 30 minutes consisting presentations to the room from DiD and people who have experienced helping others with assisted dying, and the second half opened to the floor for questions and debate.
The presentations were, for me, so compelling that I don’t see a reason why anyone would vote against changing the law to allow the choice for assistive dying. My Dad’s wife was name checked as someone who had to help a loved one deal with the implications of not being legally allowed to go to Dignitas, which of course wouldn’t be necessary if assisted dying was legal in the UK. We heard from Carole Taylor OBE who, along with her husband Mick Murray, had accompanied two friends, on two separate occasions, to Switzerland to end their life on their own terms. Friends for a number of years, they’d talked in the past about how they would help each other if the time came. First was Anne, who was diagnosed with supranuclear palsy, and then, whilst he was still grieving the loss of his wife, her husband Bob following a terminal lung cancer diagnosis. That, to me, is proof that assisted dying isn’t scary or regretful. That Bob had accompanied his wife and seen everything that was involved and still wanted to seek such an end for himself is testament to the process and the compassion of all involved, and the strength of feeling he had around the alternative, which was to suffer immeasurably.
We also heard from Dr Simon Sandberg, who had accompanied a friend of many years to an alternative facility in Switzerland. He regaled us with tales of his friend’s vivacious nature, zest for life and commitment to his business; as well as as the positive way he faced his illness and his impending death. His situation got so bad that he tried and failed to take his own life by hanging before he got to Switzerland, and also to throw himself from a bedroom window. Thankfully he was able to make the final journey and end his life by choice, doing so with a great deal of humour and self respect.
Both of these real life case studies prove to me not only that it’s not a fearful process, as I stated earlier, but that knowing that assisted dying is an option helps terminally ill people to face their final months; knowing that if everything gets too much there is an option to take control and exit with dignity. As a friend, an old friend, with years of shared memories and experiences, or a family relation, it must be a difficult decision to make to help them end their life but also an incredibly easy one – you want to end their suffering and help them achieve a dying wish. The research conducted by Dignity in Dying reveals that of those people in the general public who support the case for assisted dying, very few are put off by the potential criminal investigation that might follow. The love and support they feel towards the person asking for help far outweighs any reticence around breaking the law.
The second half of the meeting was opened up to the floor for Q&A and debate. Of course, this was always going to be a mix of opinion, by very virtue of the subject matter. Interestingly Alex Chalk, MP for Cheltenham, commented that he has always been against assisted dying but, having heard the panel speakers, was shifting his views – if not in favour of changing the law, then certainly to a point of being less against it and open to hearing more about personal experiences. This is the kind of response that Dignity in Dying were hoping for; to have an audience with people who may not have considered the personal effect on family and friends and explain not just the physical side, but the emotional and mental side for all involved.
Unfortunately from there, MP for Worthing West Peter Bottomley muddied the water somewhat by quoting ludicrous figures about euthanasia in the Netherlands – neither relevant or conducive to the conversation; although, when this was pointed out to him, he refused to back down and kept repeating the statistics (after telling the room how he visits dying people in his constituency every 2-3 weeks as though that makes him qualify for talking rot and wasting valuable debate time). It’s fare to say that he riled a lot of people with his mis-information and pigheadedness although he was firmly corrected by Professor Bronwyn Parry who independently conducted the research for DiD.
As the meeting came to an all too soon close, Lib Democrat leader Vince Cable asked to make a point. He’d missed the presentations due to other commitments, so wasn’t fully informed, which I think applies to many politicians who don’t agree with a change in the law. He expressed concern using his own Mother as an example, that the process was flawed and could be taken advantage of. He said his own Mother has a history of mental illness and is suffering from dementia, and some days she says she doesn’t want to live anymore, whereas others she’s quite content. Thanks goodness Baroness Molly Meacher, member of the House of Lords and chairwoman of Dignity in Dying, was able to make the closing statement. Speaking to Mr Cable, she quite clearly told him “your Mother wouldn’t even be eligible to be considered for assisted dying. Every person would undergo a psychiatric evaluation to ensure they’re mentally capable of making the decision to end their own life on their own terms. People with mental illness or dementia arent mentally capable of making their own decision.”
Well said Molly! This is the absolute key to the change in the law we’re campaigning for. Assisted dying would only be available to people with less than 6 months to live who are mentally competent. In truth, of the people it would be available to, only a small proportion would go ahead with the process. But knowing that they could choose that option if the pain and suffering became too much, without having to make travel arrangements and spend thousands of pounds and legally implicate family and friends would be of great mental comfort to them.
On a more positive note, it was great news that Noel Conway won his right to appeal an earlier decision rejecting his case for the right to die. It’s appalling that Noel had to go to court to even seek permission to appeal, but the law’s an ass and rules are rules. Dignity in Dying will continue to support Noel in his personal endeavour, which would of course have further reaching implications for other terminally ill people in the future.
How brave and inspiring of Noel to be fighting such a fight at a time when his own life expectancy is limited. And how unfeeling of the legal system to put him through what should be a personal right.
Today, Dignity in Dying have released their latest research into public support for a change in the law, to allow terminally ill people to choose when to end their life based on their own pain and experiences.
I’m a staunch supporter of the charity and have blogged previously about why I support them, the work they do, and why they do it. My Dad was denied the chance to go to Dignitas for a dignified end to his life on his terms, thanks to his doctor blocking access to his medical records on ethical and legal grounds. In truth, he shouldn’t have had to consider going to another country, like some kind of criminal. The option for assisted dying in his own home, surrounded by family and loved ones, should be a basic human right.
When Dad died, we asked for donations rather than flowers at his funeral. People were incredibly generous, and we were able to make a sizeable donation to Dignity in Dying, in Dad’s honour. Through this, Dad’s wife Julie started a dialogue with them around Dad’s circumstances, and they asked if she’d be interested in helping them to raise the profile of why a change in the law is needed, to which she readily agreed.
I’m so proud of Julie for getting involved and sharing her story, especially as it’s only just over a year since my Dad passed away. It’s still very raw for her, and reliving it is hard. But she feels very strongly about helping the charity and contributing to a very worthwhile cause, and wants to do whatever she can in Dad’s memory.
Such is the strength of Julie’s story, that DiD have made her the current face of their campaign. She’s on the homepage of their website, and 2 of her videos feature on the research page, alongside other people who have been in similar situations.
All we’re asking for is choice. The choice for people to live their life for as long as they are able, and the choice to end it when the pain and suffering is too much.
If you feel strongly about the right for choice and would like to support Dignity in Dying, you can make a one off donation or set up a monthly donation via the giving page on their website. You can also become a member for regular updates.
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.
12th September is a day that will forever be etched in my head and heart for two reasons. 8 years ago – on Thursday 12th September – I married my best friend, the fabulous husband.
5 days ago – on Monday 12th September – my Dad died.
If you’ve been reading this blog for a while you may have read my previous posts about his cancer diagnosis and the advancement of the illness. We knew the end was imminent. But recent visits from the palliative care team suggested there were a few weeks to go until the end. In fact he was booked to go into a hospice for pain control on Monday. He never made it. He had a massive stroke at around 5am and was rushed to hospital. When my phone rang I thought it was his wife telling me what time his hospice transport was booked for. Instead she was telling me I needed to get to A&E as quickly as possible. It doesn’t take a genius to work out that’s not good news.
Somehow, maybe due to the strength of his organs due to his pretty healthy lifestyle and relatively young age, it took until 10.40pm for his poor cancer ravaged body to shut down. An agonising day into night of watching him, listening for changes in his breathing and willing him to let go. Everyone who needed to see him did, including his Mom. That’s not the natural order of life; having to say goodbye to your own child, no matter what age they are.
My Dad told me a couple of weeks back that we should be relieved when it was finally over, because it mean he wouldn’t be in pain anymore. It’s not just physical pain. It’s the mental anguish of knowing the end is coming and wondering how bad things might get before the inevitable happens. He had no positivity or fight in him, because it was pointless. He had no quality of life because of the pain and was unable to enjoy anything because he was consumed by the disease. He told me, his wife, family members and medical professionals that he wanted to die, before the pain got too bad and he became solely reliant on other people to care for him.
Unfortunately, due to the archaic laws and closed minded politics in this country, that wasn’t an option. He didn’t have that choice. For that reason, rather than flowers at his funeral, we’re requesting donations, half of which will be passed to Dignity in Dying to help fund their continuing campaigning to allow people to be treated with the same compassion as animals (I know it’s a cliché, but you wouldn’t let your pet suffer in the same way we allow humans).
I had this tattoo in January last year. I wanted him to know how much I loved him while he was still with us, rather than having a memorial tattoo when he’d gone. It’s on my right hip, so he’ll always be by my side.
I also know how proud he was of this blog, and how much he enjoyed reading it. I have to attribute my level of education to my Dad; he encouraged me so much as a kid and spent time learning with me and teaching me.
I’m forever grateful to my Dad for everything he did for me – be that working all hours to provide for me; playing in the swimming pool with me on holiday; setting me maths questions; playing yahtzee; teaching me to drive; wanting to know everything about my first job; buying me a dishwasher for my first home; talking for hours about travels and holidays. I certainly inherited his appetite and we never tired of talking about food and how much we loved it.
I’ve been touched by the kind messages of love and support for me in my loss, and overwhelmed by how well liked and respected my Dad was by so many people.
Losing him at 59, losing our future years together, is the worst and most unfair thing I’ve experienced in my life so far. But I have no choice but to cope and get through this. Bitterness and anger won’t help in the long term.
At least we had time – time to talk about things, time to reminisce and time to somehow say some form of goodbye.