Campaigning

All-Party Parliamentary Group on Dying Well

As you know Not Dead Yet UK provided presentations to the APPG on Dying Well. Here is a link to the audio/video. https://bit.ly/3l5Kq7o


We have produced below a transcript of the APPG proceedings featuring, Baroness Jane Campbell, Dr Miro Griffiths, Dr Peter Scott Morgan and Phil Friend. (Please forgive any typos).

Good afternoon, Hello. I’m Danny Kruger, I am the MP for Devises and I’m the chair of the All-Party Parliamentary Group for Dying Well. We’re just hosting this seminar and very, very pleased to see so many people join us today. I think this is the best-attended meeting we’ve had yet, which I’m very pleased about and reflects the importance of this aspect of the agenda and the debate around the potential legalization of assisted suicide. So, I’m very pleased today to be able to hand over in a moment to Jane Campbell, who’s going to open the meeting and introduce our panellists, Jane Campbell DBE, is known as one of the most powerful leaders of the modern disability movement. She’s had a 40-year career campaigning for the rights of disabled people, especially through parliamentary engagement in the field of equality and human rights legislation. She has set up very soon a number of disability organizations including the National Centre for Independent Living, and Not Dead Yet UK. And since joining the House of Lords in 2007, as an independent crossbench peer, Jane has played key roles in securing a range of legislative rights in health and social care, employment and access to justice. She’s also effectively fought off three private member’s bills to legalize assisted suicide. So, we’re in good hands, I’m very excited that she’s going to be running this meeting today. And, and to me, this reflects the absolutely central importance of the rights of disabled people in this debate. And I’m very, very keen that we keep them front and centre in the debate that we’re going to be having in Parliament in the months ahead. And she’s got a great line-up of speakers as well to hear from so Jane I hope you can be promoted to the panel.

BC

Baroness Campbell of Surbiton

9:12

Seated in a wheelchair wearing a black cardigan and a black and white dress

Thank you Danny for letting me hijack your seminar and yes, I am that old and I have fought off many bills, select committees. I’ve also been in the High Court on the issue, so I guess you can call me an old hand. Right. Welcome, everybody. I believe there are over 100 people zooming in to the seminar, which, I’m delighted to take you through now and I’m going to introduce you to three disabled speakers, two members are members of Not Dead Yet and we have a visiting guest who intuitively supports assisted suicide but does not support the Baroness Meacher Assisted Dying bill. I hope that between us we’ll give all Parliamentarians a much broader understanding of the potential consequences of passing this bill. So, let me begin by explaining the background of the Not Dead Yet UK campaign against changing the current law on assisted suicide. I founded the organisation in 2004 when my colleague, and my good friend, Lord Joffe, introduced the first, Assisted Suicide private member’s bill into Parliament. Suicide is not illegal. So, therefore, it seemed logical to me to have those who cannot commit suicide for reasons of disability be assisted to do so. In the same, way for example, that I have assistance, to breathe, eat and to work. But of course, logic doesn’t provide all the answers. I was soon persuaded to change my mind by increasing numbers of disabled people who contacted me expressing their fears about the bill, and its unintended consequences. They felt that it would simply feed into society’s commonly held belief that many sick and disabled people suffer unbearably and their lives are tragic and consequently not worth living. And this is constantly endorsed by the media. They believe as a consequence, assisting us to die, alternatives, such as investing in palliative care, and support for living would come, secondary, it would be much easier and cheaper to help us to die rather than live. So, began my research both nationally and internationally to find out what the evidence said. Unfortunately, it soon confirmed that individuals identified by the legislation permitting assisted suicide were not offered the same equal rights to support to live with dignity and respect, in all the jurisdictions where it was legal.

So, I concluded, that to change the law was far too dangerous without greater state investment in support to live and thrive without pain and with dignity. To that end, I convened an open meeting open to all disabled people, and those who may be seen as beneficiaries of legalizing assisted dying and basically ask everyone “What do you want to do?” And on that day, Not Dead Yet UK was born. Today NDYUK is a growing network of disabled and terminally ill people who have been instrumental in defeating attempts to legalise assisted suicide in the UK.

There are no organisations of or for disabled and terminally ill people who actively campaign for a legal right to Assisted Suicide and 12 disability organisations have recently signed up to our campaign against Baroness Meacher’s Bill. More are expected to follow.

We respect and understand the views of individual disabled people who want the right for someone to assist them to end their life. But contrary to popular public belief this is not the general view held by the majority of people with lived experience of progressive medical conditions.

They tell me until such time, as disabled and terminally ill people have enough support to thrive with independence, dignity and access to palliative care we cannot contemplate a bill that will have the opposite effect which I hope will demonstrate why we are so afraid of this bill. To begin. I’d like to introduce you to our first speaker, Peter. We became friends after I watched his documentary on Channel 4 last year. Dr Peter Scott Morgan is a polymath who earned the first robotics PhD in the UK. He is acknowledged as the world expert in the unwritten rules that drives civilization and currently leads an international team pioneering the application of cutting edge, artificial intelligence to extreme disability. I think your mind will be blown. Over to you Peter.

DK

BC

Baroness Campbell of Surbiton

18:51

Sorry about the technical hitch. Until Dr Peter’s voice is found, I’d like to introduce you to Dr Miro Griffiths. He’s a research fellow in Disability Studies at the University of Leeds. He has written extensively on disability policy issues. And is an advisor to the UK department of health and social care, the European Commission and the board of the equality and human rights commission disability.

DM

Bearded and spectacle wearing seated in a wheelchair wearing a light blue sweater.

Dr Miro Griffiths

19:34

Thank you, Jane. And Hello, everybody. Hopefully, you can hear me. If we can load my slides up, that would be helpful. Oh, yeah. Great. Thank you. So I’m going to talk briefly for 12 minutes around my concerns as a researcher and academic on the proposed bill. If it goes to the next slide, please. I think an important place to start is with my overall message, which I think can be broken down into three particular areas. Firstly, we need to recognize the context of the situation. And that is disabled people, and by that, I mean, I am including individuals with health conditions, impairments, illnesses and so on, who experience extensive marginalization and injustice on a daily basis. And that is across the entirety of the life course. And we can see that with the evidence with regard to accessing services and systems, such as healthcare, and social care. We can also see it in relation to things like labour market access, and education, which of course, are linked to social mobility. And there are widespread restrictions on community participation and opportunities to contribute and have a valued and prominent role in society, which, of course, will impact the way that we think about ourselves, as disabled people and people with impairments and health conditions. But also questions on our self-worth and value will also affect the way that we think about the importance of services and what we want from services. So, recognising that context, I think it’s important to read this assisted dying bill with that in mind. And my argument is that it’s not a safe time to be introducing this bill, because of the historical legacy of injustice experienced by several people, but also because currently, we have, we are going through a pandemic, which has exacerbated the marginalization experienced by disabled people. And is a point to all of those listening here, I suppose the question is, what is the purpose of legislation and policy? Is the purpose, and in my view it is, to provide people with sufficient support, to live, to contribute to their communities, to have opportunities to engage and be part of society, and participate? So the question is, does this bill in your view, does this bill provide that opportunity? Does it prompt us toward a direction of sufficient support to live and contribute and thrive? And if it doesn’t, and this is an extended question, does the bill undermine these issues and these points that have been raised by Jane in the introduction? So to do that, I’m going to cover a number of different areas. And I want us to think about all these issues in relation to the current bill. Next slide, please. And briefly speaking, I think it’s important to recognize that much of disability policy. And the legislation around disability has attempted to emphasize that people have impairment and health conditions and illnesses, and so on. But the disability comes from the way society is organized. And it comes through the built environment. And it comes through attitudes, and it comes through policy implementation. So, we need to think about this in relation to the bill and understand that much of the concerns raised by communities who are advocating for assisted suicide and assisted dying mechanisms are talking about experiences that are produced within society. And surely the emphasis should be placed on trying to remove those barriers. When we think about the importance of support, the importance of care, and the importance of participation in society. Next slide, please. And if we think about the current situation facing disabled people, we are aware of how the pandemic, as an example, has affected disabled people in relation to their thoughts on health care, and health professionals and their own ideas and values about themselves as human beings. And if we think about much of the rhetoric that surrounds the assisted dying bill, we see emphasis placed on people talking about accessing assisted dying, because their life is, is extremely difficult. They’re experiencing deep concerns and worries about their life and, of course, in relation to their healthcare and the experience of healthcare. But when we have the latest data that shows us that 35% of disabled people are experiencing affected healthcare, access to health care has affected 40% of disabled people. Their overall well being affected in terms of 65% and of course, the pandemic itself has created a worsening of people’s mental health. And those last two points, 1/4 disabled people feeling that they are a burden on others, feeling anxiousness for some; 67% feeling lonely and when we think about this in relation to why people may choose to go down the route of assisted dying/ assisted suicide, we have to acknowledge that this is the context. This is the real situation faced by people with health conditions and impairments. And that is why the bill is unsafe, in my view. But let’s drill down a little bit further into the bill and think about the current problems and the problematic areas. Next slide, please. I think a useful way to do this is to compartmentalize this in five areas. And these are the five areas that I have outlined, which I feel are problematic with the current bill as it stands. And the first area is this issue of individual autonomy, and the principle of sanctity of life. We have to recognize that social policy is designed to affect and instigate change for the entirety of society. And that doesn’t dismiss the important voices and views of those who advocate for assisted dying and assisted suicide. But what it does recognize is that we have to base our opinions on the way the legislation should be organized, and the way that social policies should be implemented, on how they will affect the totality of society, how they will affect our behaviours and our thoughts and principles about certain aspects. And of course, how they will affect the provision of services and the infrastructure around that. So, we have to think about how the bill is going to implement mechanisms and procedures, which will undoubtedly change and shift the way that we think about healthcare, and healthcare professionals, and of course, the importance of sufficient support to exist and be part of your community. And we can see that, in particular areas such as the shifting of social attitudes and perspectives, often the language that is used, surrounding the terminology used by advocates for assisted dying, propose this idea of relieving a burden or relieving stress on families and informal networks. But we’ve seen this also translated in countries where there is assisted dying and assisted suicide infrastructure. We see examples such as in Oregon, where these sorts of opinions become integrated within medical practice, where we see people being offered assisted suicide because perhaps other treatments and support infrastructure is not available or is not as desirable as this option. We see situations where families have recorded accounts where health professionals have raised the option of assisted suicide as a way to spare or relieve the burden on families and individuals. And of course, there are issues here with the increase in cases and the broadening of criteria. And we see that in terms of the increasing numbers, percentages of people who are accessing assisted dying/assisted suicide. So, it’s the creeping effect of increasing numbers, the peer-reviewed data that I’ve shown you here 344% increase from 1998 to 2011. In Oregon, if you look at that now, the data from 1999 to 2020. It’s an 807% increase in the number of people choosing to die through assisted suicide. And when we look at the reasons why people choose to do this, we see emphasis placed on the burden on families and caregivers being cited, we see issues around the ability to participate in enjoyable activities, and the fear and the concerns around isolation. And as I’ve touched on before in the previous slides, if this is the current situation for people, because of the way that society is organized, surely the emphasis is on changing the way society is organised and removing the barriers in society so that people can have enjoyable opportunities as their life progresses and as their needs, health needs, change over time. But there are also issues here in terms of concern around health professionals, and the implications that this has for the practitioner role. So again, we see the data in Oregon between 2001 and 2007. the quarter of the prescriptions written for the lethal drug prescriptions, only 3 doctors out of 109 were writing the prescriptions. So this shows that there is a problem in the way that that the provision of assisted dying will become concentrated by prominent advocates within the medical professional. And this has major implications for accountability and transparency. But of course, there’s an issue here as well around the conflict of interest. As we know health professionals are often involved in setting the budgets and determining levels of access to services. There is a conflict of interest when we think about how social and economic concerns around healthcare intervention may then become incorporated within our perspectives on seeing assisted dying/ assisted suicide as a viable option. If I think about my own life, as a disabled person, over 100,000 pounds worth of support from healthcare assistance every year, two weeks of current medical drug treatment is 8000 pounds from my condition. So there is always a constant question to judge and value the role of current healthcare procedures. Next slide, please. If we drill down even further, we can start to question aspects of the bill even further. So we have these concerns around the creeping of the inclusion-exclusion criteria. And what has always perplexed me is often those who have been campaigning for changes in legislation, those who are advocates for the assisted dying bill who are using their own experiences, I’m not clear on how they would be eligible for the assisted dying procedure under the current offer made in the bill. So surely, as we’ve seen in other countries, we will see an expansion agenda where those who are not eligible but are currently campaigning, will want to have access to this treatment. And we have seen this undoubtedly occur in other countries. And of course, I see there’s also a contradiction as well, in the bill, in the way that the bill dismisses those who have a mental health conditions, or issues of capacity. But if you’re arguing that the prognosis of a terminal illness necessitates this sort of intervention, then how can that terminal condition then become irrelevant when it is combined or intersected with other groups (people with mental health conditions or learning disabilities)? There’s also concerns I think around the arbitrary measures. And as we assemble together the changes in health outcomes, medical technologies interventions, we see that it is difficult to define when an expected death will happen. And the data shows us that there are groups who have lived for longer, even though when there are professional knowledge and outcomes associated with predicting death. So even the arbitrary measures need to be questioned. And I argue that they are unsafe. And of course, the infrastructure issue here. And carrying out the due diligence associated with the declarations remains ambiguous. How do we determine the absence of coercion and duress, particularly when the Royal College of psychiatrists and others have argued that it is very difficult to determine and recognize experiences of coercion or duress or even mental health when it becomes entangled with terminal illness? And, again, this point I keep making about how the emphasis is on improving disabled people’s access to community participation in society. So surely, we should be emphasizing resources on health care and social care and the broader strategies associated with our participation. And this becomes a way to think about the importance of healthcare as our body changes, rather than attempting to accelerate mechanisms and approaches that will ultimately end with individuals dying. Because last slide, please. This slide, please. So my argument here is that I think the bill remains unsafe as it currently is, I think it is introduced at a dreadful and dangerous time. And we have to acknowledge the context of disabled people who are being marginalized in society, exacerbated by the pandemic. And I’ll leave you with a final point that often perplexes me. Often those who support the bills and advocates of assisted dying, dismiss the concerns by campaigners, organisations, and scholars who are against assisted dying bills such as this one. But if the bill is supposed to be coherent and reliable and safe, then surely those who are advocates for it should be able to demonstrate how all of our concerns can be addressed through the current ways in which the bill has been designed and with the current procedures in the bill. Because if the concerns that we have raised cannot be addressed within this current iteration of the bill, that surely means the bill remains unsafe. And that’s where I’ll stop.

BC

Baroness Campbell of Surbiton

34:28

Thank you very much. Super, but there’s a great deal of data there which we will let people have after the seminar.

We’re going to give it another go. So bear with us. Dr Peter Scott-Morgan, please speak.

Head and shoulders picture of Peter Scott Morgan

Dr Peter Scott Morgan

34:58

Noble and right honourable Ladies and gentlemen, I find myself intuitively supporting the assisted dying bill. To me, its intentions appear so obviously reasonable, compassionate, humane. But as a scientist, I’m trained to question even the most obvious, especially the obvious, because if those most fundamental assumptions, the unquestioned assumptions prove false, then every conclusion based upon them is invalidated, even the reasonable, compassionate, humane ones. So, as part of your due diligence, I invite you to focus on the most fundamental, most unquestioned assumption of this bill. The apparently self-evident truth that with an untreatable condition such as late-stage motor neuron disease, MN D, with someone diagnosed as being within six months of their death, there is no reasonable expectation that the patient can not only survive but thrive for many years, with an increased quality of life is a crucial test for me. If that seemingly ludicrous scenario occurred, even once, then it would unravel all the reassuring assumptions underpinning my intuitive support for the bill. Everything would be called into question because of confusion about the likelihood let alone inevitability of intolerable suffering. concern that we are not only shortening the life by a few months, worry there are insufficient protections against patients not being fully informed. Uncertainty between being terminal and simply being disabled. The danger is that some with an extreme disability may unnecessarily kill themselves in anticipation of what they incorrectly believe will inevitably happen. And the ethical risk of protecting an individual’s human right to choose to die without putting the same effort, education and funding into their right to thrive. None of this fundamental unravelling would undermine the bill’s basic premise that this is a personal choice, but it’s unequivocally would undermine the assumption that the choice was fair. I know because this is me. I have late stage MND in 2017. Doctors agreed I might die within six months. Now. I’m always completely paralyzed, locked in. I’m a prime candidate to be fast-tracked for death. But I will pass on the other. I am, frankly, far too busy having fun. Let me explain how and invite you to decide whether I trigger the criteria for revisiting the assumptions behind the bill. Does what’s that the world’s cruellest disease nevertheless, inevitably suck the joy out of life? Look, I found the trick to enjoying total paralysis is simply to imagine you’re in a luxury spa hotel, and the Maitre D insisted you put your feet up and you don’t move a muscle is brilliant. In the life of a sedentary Ferro, I’ve discovered my inner slob. And no one complains. Even better paralysis is an engineering challenge far more than a medical one. And that’s something I know a bit about. You see with MND. The good news is that you always be able to go to the loo. The bad news is you’ll never be able to get to the loo or eat or drink. My solution was to completely rebrand my gut and to add four new connections. food in liquid in waste number one, waste number two-path it’s never been done before. So I booked to see a top surgeon at my local NHS hospital here in torque to explain my ideas. After a while, he shook his head and said, Of course, we should be offering this on the NHS. A few months later, a trio of him and two other surgeons performed the first-ever such operation in the world. Now, I never have to get up at night. I can eat while I’m asleep. For the first time in my life, I drink over two litres of water a day. For me, it’s been a definite upgrade. Now I was guaranteed not to starve to death, there remains that pesky problem of carrying on breeding. Lots of people with MND die of a type of pneumonia caused by saliva getting into their lungs. So, I came up with the idea of using an operation designed for throat cancer that detaches your windpipe from the throat, so saliva can never get in. It turned out part of the first time the patient the NHS ever did this, for the only downside was I had to sacrifice my voice box. So while I could still speak biologically, I worked with an amazing company in Edinburgh to use artificial intelligence AI to clone my voice. This isn’t how I’ll end up sounding, that’ll hopefully be indistinguishable from how I used to speak. But my Peter 2.0 voice already sounds very like originally, this beginning to show some of the emotion and emphasis and pauses that defined the real me just as much as my voice. I’m planning to use more and more AI to work with me on everything. Everything from speaking to controlling things to moving about, I need AI to second guess what I’m wanting to communicate, to partner with me, like a chess combo. And yes, that AI we some of the top tech firms in the world have started researching with me, we get better every year in pace with computer power. That’s going to transform my ability to convey the real me the one insight. A year ago, we set up a charitable research body called the Scott Morgan Foundation, to act as the focus for a hugely ambitious research program stretching across decades. And we’ve been unbelievably lucky in being able to attract some of the world’s top brains to get involved. Our mission is to completely rewrite the future of disability. And the beating heart of that mission of the Scott Morrison foundation is to light an unquenchable beacon of hope for those with extreme disability and so-called terminal conditions to guide them out of the darkness. As a scientist, and as a prototype. I’m very optimistic about the power of AI and robotics to transform our expectations of what it means to be old. Even in terms of becoming forgetful or getting dementia. We are at the early dawn of escaping the fear of becoming infirm or being powerless or feeling trapped in an inadequate body. My overall quality of life is exceptional. I have love I have fun. I have hope I have dreams. I have a purpose. Oh, did I mention I’m still alive? I mean, really alive. Not just one of the Living Dead but surviving. thriving. My diagnosis with MND has confirmed to me that joy in life, contentment, happiness fun, is far less a result of circumstances than many assume they are active will. The point is each of us can find ourselves crushed, simply staying alive. But each of us can also choose to rise like a phoenix and thrive. Whatever we are, whatever our background, whatever our circumstances, whatever ambitions. Of course, it’s scary. But when our response to our clash of hope and fear is nevertheless to deliberately break the rules rebel against fate for our own destiny, then sometimes impossibly, we get to leave our fingerprints on everyone’s future, and we change everything. I want you to meet someone. He is a human Phoenix, rising from the ashes of his old body transformed. reborn. He’s also me their real me, Peter, on the leash. This is why I’m transitioning to Hello, I’m Peter 2.0. Welcome to the future.

BC

Baroness Campbell of Surbiton

45:02

Well, thank you very much. I think it’s really important for me to draw all our viewers that you are the first or one of the first to see, Peter’s new avatar. As you can see all sorts of features to break Peters voice alive with expression. So thank you very much for that Peter. Again, I think you must have given all of us some real food for thought, as a living example of someone who is really transitioned from the experiences of having extreme impairments, as people call it, of MND. So moving swiftly on. I would like to introduce you to our last speaker today, Phil Friend OBE, from his active supporter, and co-convener with me, since 2009, as the organization got bigger, and bigger I certainly couldn’t do it on my own. And Phil has been a great stalwart, by my side since then, after a very successful career in social work with children, he sets up a consultancy, and training company that promotes employment, independent living, and social inclusion programs for and with disabled people fell over to you.

Grey haired wearing a light blue and white striped jacket

Philip Friend OBE

46:51

Thank you very much, Jane. And thank you, everyone else for joining us this evening. Well, it’s really afternoon. How do I follow the previous two speakers is the challenge for me? And I think in discussion with colleagues about my part of this process, I wanted to talk primarily from a slightly more personal view. Just to kick things off, I contracted polio when I was three. I’ve therefore been disabled for most of my life. And I should explain that as a result of that I dream in a wheelchair, I do not dream walking. It’s not what I do. So, for me, disability has always played a major role in my life. As a result of that, I’ve been very fortunate to be born in a country, which has medical care system and other systems in place, which enable me to live a very full life I was born just before the National Health Service was formed, I benefited hugely from the fact that it existed. When I caught polio I was placed in an iron lung because I was completely paralyzed and couldn’t breathe. And doctors and other medical professionals did everything they could to ensure that I survived that experience. As a three-year-old, I was then admitted into different hospitals where I spent many of my childhood years. I then went through a special education, which equipped me maybe not as adequately as it might have done to deal with the world that I was about to move into. What I want to remind you the listeners is that the medical profession plays an absolutely crucial and vital role in the lives of all of us, but particularly those of us who have disabilities or long term health conditions, we are frequent users of their services. And there’s no doubt in my mind that without the care and attention I received, I wouldn’t be talking to you now.

What the Meacher Bill does for me, and for many disabled people I and should mention that I feel an awesome responsibility to be speaking on their behalf especially for those who can’t be with us this evening. The simple fact is that the Meacher Bill begins to place some doubts in our minds and doctors’ minds about what their role is. I’ve always had, and I think many, many people like myself have always had complete and unshakeable faith and trust in doctors and medical professionals. They’ve always done what they could to enable me to live life to the fullest. But as Jane mentioned, we’ve been involved in several campaigns on and off for a long time now. Various Bills have come and gone to try and change the law on assisted suicide. The scary prospect is the fact that doctors are now going to be asked to consider ending life rather than saving it. That I think completely undermines the relationship that exists between the patient and the doctor. It’s not an option that can be offered at the moment, so we have to explore other ways to help patients to live.

The BMA, later this year is going to hold another conference where they will once again discuss this issue. They will be urged or at least we believe they will be urged to change their position on assisted suicide and support a law change. We are really worried about that. We think that the doctors are the people that protect us and help us to manage thoughts that life is not worth living. A quote that I’d like to use from Robert Twycross, who is a Palliative Care doctor. He says, “Palliative care is based on the belief that life has meaning and purpose, up to the moment of death. Whereas assisted dying is essentially nihilistically expecting health professionals to deliver both palliative care and assisted dying, in other words, to face in two directions simultaneously, is too big an ask”.

One of the greatest challenges that I believe the Meacher Bill proposes for disabled people is the threat of the relationship we have with our doctors and others who look after us.

Now, much has been made, and Miro talks about it and so did Peter, the idea and concept of being a burden. Miro specifically talked about the perceptions of disabled people or disabilities. Historically, disabled people or those with disabilities have been seen to be about suffering, pity, hopelessness, and tragedy. These words are used to describe both the disability and disabled people. And over the last 30 or so years, there have been active campaigns to try and shift this view. Some of you will have heard of the Social Model of Disability, which shifts the emphasis away from the individual more to the discrimination that the individual faces. But there is no doubt in my mind that disabled people are still viewed pitifully. And while that is the case, it’s very easy to t take the view, that it would be easier for this individual to end their lives. To “put them out of their misery” After all they can’t be successful can’t hope for futures, they can’t aspire to do things. I would remind all of you that as a result of the treatments that I have received, I’ve had a very successful career. I have four children, I have five grandchildren, I’m still doing very nicely, thank you and living a life to the full. So this idea that disability is something to be pitied and therefore we should act kindly towards it doesn’t cut much ice with me.

Turning to safeguards contained in the proposed bill that suggest that there are adequate protections for disabled people. Some of these “safeguards are based on the notion of consents and involvement of families in the process. I’m reminded that some families are not nice. Some families do not treat their family members well, particularly their disabled family members. 

A former Court of Protection Judge, Denzil Lush, has estimated that one in eight Lasting Powers of Attorney may involve financial abuse. And according to a 2015 report by Age UK, 50% of financial abuse of elderly people in the UK is perpetrated by adult children. So, when we think about the idea of covert coercion, etc, it’s worth reminding ourselves that it’s very difficult to understand the dynamics of families and therefore extremely difficult to protect the vulnerable or those at most risk from their relatives. The safeguards don’t inspire much confidence in my view.

The recent experiences of COVID have taught us that resources are scarce that life or death decisions are made on whether resources are available. As I mentioned at the beginning of this presentation, I was lucky enough to be placed in an iron lung and as a result of that, I survived. I suspect that nowadays, different judgments might be made based on my age, and my long-lasting condition. I think that until the state, and I use that term very generally sees disability as a positive issue, rather than a negative one, then continuing judgments will be made, which do not necessarily work in the best interest of disabled people. We will continue to feel that we are a burden to our families and on wider society.

As I move towards the conclusion, I believe that the safeguards that are currently in place are not safe at all. Miro pointed out that there is evidence that in every jurisdiction where assisted suicide currently exists, they have been expanded to cover more and more people. And there have been huge percentage increases in the numbers of people applying for assisted suicide, this is scary, to put it mildly.

For the parliamentarians listening to this, and who’s participated in the conversation this afternoon.

It is our concern, that you should not focus on personal choice or personal morality, but focus on public safety. This has to be the primary consideration, in all legislation.

What we want you to do is to help disabled people to thrive, not to die.

And finally, if you can go through the voting lobby for those of you that will, and put your hand on your heart, and be sure that there will be no unintentional deaths as a result of this legislation. Please vote for it. But if you can’t, then don’t.

Thank you very much.

BC

Baroness Campbell of Surbiton

56:53

Thank you very much. I’m going to hand it over to Danny Kruger now. Danny, thank you again for letting me hijack your APPG

DK

Danny Kruger MP

57:42

Jane, thank you so much. You’ve hijacked it brilliantly. And I’m very pleased and very grateful to all those speakers that absolutely tremendous and compelling set of arguments and data. I’m convinced I was anyway, so I’m very, very grateful. We’ve got a few minutes only for questions. So, every so if we can get everyone promoted to the panel again, I’m just going to fire a couple of questions at them if that’s okay. Jane let me come to you first, yeah, since you’ve addressed this, but why don’t you just try and summarize it in a sentence or two? What safeguards Do you think should be in place to make the law safe? If it were to pass? How could it be amended to be safe?

BC

Baroness Campbell of Surbiton

58:28

I’m not sure that there could be enough safeguards in a particular bill at this particular time, to make it safe for everybody. Having just come out of a pandemic, where hundreds of 1000s of disabled people endured great problems surviving throughout and were not given equal health and public service support to live I think the timing of Bill is very insensitive. I think that we need to understand a lot more about what could potentially happen to disabled people as an unintended consequence before we start legislating to end their lives prematurely in the name of ending suffering.

DK

Danny Kruger MP

59:31

Okay, Jane, thank you very much. Thank you. Miro. Can I ask you a question that’s coming from Ellen Clifford is interested in the relationship between the pandemic and what feels like a goal a global rush towards legalization? So, Spain, Canada, other parts of the UK or seem interested in this. Do you relate that to the pandemic and what do you see as the connection if any?

DM

Dr Miro Griffiths

59:57

I think it does because we’ve seen during the past didn’t make that much of the emphasis was questioning disabled people’s access to health care and questioning the quality of life and existence, particularly by non-disabled communities without the voice of disabled people. So, my argument would be, it’d be exacerbated by the pandemic, but the historical legacy of social injustice for disabled people and inequality has to be acknowledged in this process as well. And when you have had a legacy of campaigning by disabled peoples, organizations across the globe, that have based the majority of their arguments on insufficient support, to live to contribute, having opportunities in society, surely that should be the emphasis of parliamentarians and policymakers, rather than debating and questioning mechanisms in operation that will accelerate opportunities to die, and, of course, bring a real problematic situation for the government, which are medical professionals, being asked is to facilitate death. And I think those questions whilst they can be debated, must not overtake the broader arguments by themselves disabled people and their organizations, which is the right to live and the right to thrive and be part of society in a valued position.

DK

Danny Kruger MP

1:01:19

Miro, thank you very much, indeed. Thank you. And then my last question is for you, Phil, and it’s coming from James who, who says it says this, that suicide is legal in this country. If I am too severely disabled to commit suicide without assistance. If I become terminally ill, and I’m suffering intolerably, what advice do you have?

PF

Philip Friend OBE

1:01:53

I think the first question I would ask is, why is he suffering intolerable? I think we’ve got a long way down the road of helping people feel comfortable and at peace, at the end of their lives. So that’s my first response. But I think the second is that I don’t believe that allowing the suicide act to be extended to include assistance to die necessarily helps the majority. It argues against providing good services at the end of life because it’s cheaper and quicker to end it. And we’ve got evidence from a number of economic papers that suggest that one of the big pushes is that long term care costs a lot of money, whereas of course, assisted suicide, drugs don’t. So for me, it’s not about personal issues, I do recognize that many people suffer or feel that they may suffer and want to do something about that and take control over their lives. But I think that puts the rest of us in jeopardy. And that’s why we take the position we do.

DK

Danny Kruger MP

1:03:13

Thank you. Thank you very much indeed. Jane, last word for you. Do you want to say anything you’d like to say particularly about the process of the bill? Are we now expecting it to come to your house in early September? What would you like people to do between now and then?

BC

Baroness Campbell of Surbiton

1:03:28

I would like people to be informed about all the potential ways to alleviate their often unfounded fears, I would like them to not have this issue from their own experiences or what happens to their life or what has happened to above my head, my first husband died from HIV from contaminated products. It was the worst five years of my life. If I took that one experience and said, this is the reason why I would like to give assistance to die, but it was extremely difficult at the end of his life, I would know that that would be wrong because it will affect 1000s of others negatively. This cannot be seen as an individual battle. You must look at the public safety issues. And look, look.

DK

Danny Kruger MP

1:04:36

Thank you very much. Very, very powerful. I hope you also give practical advice to people who are watching to write to their right to parliamentarians. That’s what we hope people will do over the next few months out.

BC

Baroness Campbell of Surbiton

1:04:48

Yes, I would ask people, especially those with the lived experience of a terminal, condition or a progressive disability to write in and say exactly why you might be afraid.

DK

Danny Kruger MP

1:05:08

Jane, thank you and my thanks to everybody to all our speakers, everyone who’s taken part. It will be great if people could contact their MPs or peers. The APPG website has a whole host of useful resources and material and information that’s dying well.co.uk please follow us on Twitter that’s @dyingwellappg. And do get in touch with my office through parliamentary routes. If you’d like to get involved, or for more information, I’m extremely grateful we’re going to close the meeting there.