Next week (14th May,) Jane Nicklinson, the widow of ‘Right to Die’ campaigner, the late Tony Nicklinson will begin her quest to see the Court of Appeal overturn the High Court ruling against doctor-assisted death. She will be joined by Paul Lamb who is severely paralysed and is seeking a separate court declaration that any doctor who killed him would have a defence against a charge of murder.

In what is shaping up to be the start of a momentous week and long battle, Lord Charles Falconer QC will be tabling an Assisted Dying Bill in the House of Lords on Wednesday 15th May, seeking to legalise the choice of assisted dying for terminally ill adults with less than six months to live.

In England and Wales, it is an offence to encourage or assist a suicide.The law is almost identical in Northern Ireland and anti-euthanasia campaigners say the current law protects vulnerable people.

Joining us in this special Benenden Health assisted dying live webTV show are Heather Pratten, Official Patron of Dignity in Dying, who is in support of assisted dying and Mik Scarlet, Broadcaster and Journalist, who is against a change in the law. Mik has experience of members of the medical profession questioning his "quality of life", even though he is happily married and has a successful career in the media, things which many non-disabled people dream of.

Heather herself has been put on bail for murder for being with her son Nigel (who had hereditary degenerative neurological disorder, Huntington's disease) and putting a pillow over his face when he lost consciousness from the overdose. In the end she was charged with aiding and abetting a suicide and received a conditional discharge for one year.

So where do you stand in this controversial debate? Would you consider assisting a loved one to die, knowing it is illegal in the UK? Would you travel to another country where assisted dying is legal to help a loved one die as/when they choose? What circumstances should qualify for the right for any ‘assisted dying’ law to be utilised?

Join the live Benenden Health webTV show where we have two voices from different sides of the assisted dying debate, who will be discussing the whole issue in much more detail.

Website: www.benenden.co.uk

16749 Assisted Dying

H: Vicky Letch – Webcast Host

A: Heather Pratten - Official Patron of Dignity and Dying

B: Mik Scarlet – Broadcaster & journalist

H: Hello and welcome to Health and Wellbeing, I’m Vicky Letch. In England and Wales it’s an offence to encourage or assist a suicide but on the 15th of May Lord Charles Falconer QC will be tabling an assisted dying bill in the House of Lords, seeking to legalise the choice of assist dying for terminally ill adults with less than six months to live. Joining me today and in support of this change in law is Heather Pratten, official patron of Dignity and Dying and Mik Scarlet a broadcaster and journalist who thinks the law should remain as it is. Welcome both of you, thank you very much for being here.

We are live today so if you have any questions or of course opinions or thoughts of your own for Heather or Mik and you want to get them across all you have to do is use the box on your screen and we’ll do our best to tackle them over the course of the next fifteen minutes or so. If you are tweeting whilst watching the show all you have to do is use the hashtag #StudioTalkTV and we will try and give you a mention. We’ve had lots and lots of comments come in already. Lots of you have lots to say on the matter so keep them coming in and we’ll get through as many as possible.

So we are looking at a momentous week in terms of what’s going on. Not only do we have Lord Falconer’s bill but also Jane Nicklinson, the wife of the late Tony Nicklinson, the right to die campaigner is looking to overturn the high court ruling which is against doctors assisting death. So why do you think this is all happening now?

A: I think it’s partly coincidence as well although you’ve got the focus on the new bill going through which is giving all the extra publicity so that could have been timed for that as well. Most people are coming round to think that there should be a law passed. The present law is a bit woolly and is open to lots of interpretation and it’s much better to have a properly legalised bill with proper safeguards in place that people can understand quite clearly and know what the limits are. The other one with Paul Lamb and Jane Nicklinson is entirely different and the two shouldn’t be confused. It is quite confusing for people to talk about the two at the same time. I’m all for the Dignity and Dying.

H: Absolutely, ok. What would you say though, you were talking about it having to be airtight because each case and individual would be so very different just with the nature of what we are talking about. Mik what would you say about the law at the moment in the fact that it protects those that we would consider as vulnerable.

B: I think that is the key issue as Heather said, there are two facets to this discussion. You’ve got assisted dying which is for those people that are approaching the end of their life but then you’ve also got people that are trying to get assisted suicide through and that is for people who claim their quality of life is such that they want to be assisted to die by someone, a member of the medical profession and I think that that’s when it starts to get worrisome for me is the idea that we are going to ask doctors to change their relationship with their patient. So instead of them fighting to keep you alive or at least to make sure that your suffering is kept to a minimum amount that they will then have the assisting someone to die as part of them treatment package and does start to worry me and I think that we’ve got to find a way of going forward with this discussion because it is a discussion that we need to have but in a rational and calmer manner and I think for some reason this week it has definitely all kicked off and possibly the two mean that it has muddied the water in a lot of people’s minds.

H: In terms of the relationship between the doctor and the patient how does that worry you? If it was considered as something at the end of someone’s care plan in terms of every avenue had been exhausted?

B: I’ll tell you an example, a little while ago I did a documentary where I interviewed disabled people who had discovered on their notes DNR orders which is do not resuscitate. Now they hadn’t asked for those, they hadn’t requested that. That had been placed on that by a doctor who had looked at their medical notes and thought that they had a quality of life that meant it would mean that they might suffer if they were resuscitated and I myself have had doctors say to me about my quality of life and about whether or not I wanted to go forward with my treatment but there had been no discussion with me about what my life was like it was just a list of medical ailments and impairments and I won’t denying if you look at my medical notes they are quite scary. Even me, they scare me but I think that’s the worrying issue is that we need to make it so that, I don’t want it to be something, it’s completely, we can’t discuss it but I think it needs to be done in a more sensible and calm manner. I mean today me and Heather we’ve been chatting all day and we probably have a lot more in common than we actually thought at the start of the day but I think it’s just that the discussion, everyone is gripped by panic about what might happen to them and I think that when that happens we all lose sight of being sensible about what we are discussing.

A: But what we haven’t said today is that people can get a living will. They can fill it in and they can state what treatment they want, what treatment they don’t want. This can be downloaded by compassion in dying from the internet and it’s very important that people do that. I think that is a major, major step.

B: Yes, I totally agree, I think it’s something that we don’t discuss very often is that we legally have the right to say no to any treatment. If you knew the amount of times I’ve walked out of hospital because I’ve thought, I’ve had enough of this and we are legally entitled to do that so if you are at a point in your life where you think I’ve had enough you can legally say, that’s it, no more treatment for me and that it gives you that level of control and I’m just really unhappy at the idea that some people are asking that they have the right to ask somebody else to do something they wouldn’t necessarily do for themselves. Do you see what I mean, they are asking someone else to kill you. The majority of people we are talking about have got conditions and illnesses which are progressive and I just think that sometimes we’ve got to make sure that we clarify that situation first before we start saying, and if you are too disabled to do it yourself that someone else will do it for you. There are ways and means of finding, I wound up in a wheelchair so that’s a mechanism for getting around. There are mechanisms that we could discover and find and argue and discuss with each other that at the end would mean we weren’t asking somebody else to do it for us.

H: Heather, I want to talk to you about the research undertaken by Benenden Health. Quite a surprising figure, well it certainly will be a surprise to some people. 77% of people in the UK are in favour of assisted death being legalised in the UK. Why do you think that’s the case?

A: I think people have become more open to talking about death and there has been so much media attention to it. People are worried about how they are going to die, what’s sort of death they are going to have. They want a good death, they want to be at home, they want to have their family around them and I think this is why they feel that they should be in control, that it should be their choice of what they have.

H: Tell us a little bit about your story.

A: Well my son was different he had a degenerative disease so each year he would get worse. He could have lived another seven to eight years but each year would have been worse. He was beginning to lose the use of his legs. His speech was going he was finding it difficult to swallow food. He found he couldn’t be around his friends anymore. He could no longer hold a pencil and drawing was his passion in life. He could no longer do that. Because it was a genetic disease he’d seen his father and he’d seen his aunt suffer to the end and he just knew that it wasn’t for him. We talked about it for two years and he looked at all the options at one point he tried to starve himself but I had him taken into hospital. He was absolutely furious with me. He then said he’d been to the train station but could only think of the train driver. He did say if all else failed he would hang himself but his friends obtained some heroin for him. He didn’t want to die on his own so I stayed with him. He couldn’t inject it because of his movement so he ended up swallowing it and we actually, he said if I don’t leave here alive I will never speak to you again and I said well if it works you’re never going to speak to me again anyway and we actually sort of laughed over that and he said, I’m not frightened to die this is a happy day.

H: Do you think having those conversations about death are more and more important because we can be quite closed off I think as a society generally to us talking about people dying.

A: Yes. We had days out together and we would laugh and joke but at the end of the day it always came down to how he was going to die and he was specific. He didn’t want a violent death he didn’t want to be alone.

H: and you wouldn’t have wanted that for him. So how were you treated after that happened by the law?

A: The police were very good to me. I was quite straight forward with them, I said that at the end I had put the pillow over his face but he was so close to death that that didn’t make any difference which was very lucky for me but they treated me really well. They were very kind to me and I felt that they were on my side to be quite honest.

H: That’s good, that’s good. We have a comment here from Sarah Desburgh, thank you very much Sarah from a giving tribute and it says my mother in law passed away last week after a two year battle with pancreatic cancer and she told me before she died that she just wanted to sleep and not wake up. Why can she not have that choice, it’s her life and should have been here death and then a similar comment here from Tracy Castle, thank you Tracey. I suffered a brain haemorrhage fourteen years ago I know that I’ll more than likely end up with early dementia. If this does happen I don’t want to be a burden on my family. I think in this situation and many others if it’s what the person wants let us make up our own minds while we still can make that decision and David, similar again, how can people with advanced dementia be given the option for assisted dying when they are unable to communicate their wishes.

B: But then we have got to be careful of people who are vulnerable and the idea, this is what we were discussing the idea of a living will is if you make your wishes known before you end up in that state, but if we make the law so that you can have it done for you by your family than you have no absolute guarantee unless you’ve made some kind of absolute cast iron proof that you are not being forced into it, that it is not a lie, that you are not having it done to you against your will and this is my problem is time and time again people can put up all these examples but everybody that we are talking about so far has the opportunity to say at some point I am going to take my own life. What we are discussing here, what this law is saying is not the right that you can take your own life because we all do have that, it’s the right to say to someone else you will take my life for me and that’s a massive difference. So surely if all of these people that are writing in saying at some point I know I’m going to reach this point, it’s not like they are going to wake up one day and Shazam, it does happen to some people, but the majority of people that are saying these comments are coming from a position of I have a disease that is degenerative in some way or other, I want to know that I can take my life. Well you can and I have nothing against, seriously but I do have something against and idea of saying else must do it for me and it always the medical profession and I worry about that.

H: but if people have made that decision and you know as we were discussing, the conversations have happened over a year, two years but when it comes to it they are not physically able to go through with it.

B: I still don’t like the idea of making, it’s taking your responsibility for your death and saying I want to die, I can’t do it so I’m placing it on someone else and I think that’s a huge ask to ask of someone, to ask of our society. Society must kill me and once you go down that road where will you end. My own experience when I was fifteen I went into a wheelchair after I was cured of cancer and all of that but my spine collapsed when I was fifteen so I went from being a walking person a bit like Tiny Tim, to a wheelchair user and when I went in the chair I lost the ability to stand, to walk, to dance which I love to do, to have sex and to have children. Now as a fifteen year old, these are all big things and I became massively depressed and I even tried to commit suicide but I didn’t. I stopped myself because I was worried that my mum would find my body. Six months later, my life had started to get better, ten years later, I was the first actor to appear in a UK soap, I presented my own kids’ TV show which I won an Emmy for and I’d just come off tour with my band supporting my teenage hero Gary Newman. You’d never have told me when I was fifteen that that was my future. If I could’ve gone to someone at that point and said, will you kill me because I cannot take it, none of that would’ve happened. You’ve got to remember that a third of people in this Benenden survey said that if someone is severely disabled in a way that affects their lifestyle, they should be able to take advantage of assisted suicide. Well trust me, being incontinent, as I was then, infertile, impotent and unable to walk at a fifteen year old, I don’t think I could think of much more that would’ve affected my lifestyle then. So I would’ve fallen completely under the auspices of what a third of those people want and yet here I am at the age of 47, happily married, I have a wonderful life and I spend my time trying to tell other people that are newly disabled not to despair because the world out there is really amazing. You can have a wonderful life, so we must make sure we don’t confuse the two and I think that’s one of my worries. So many people talk so impassioned about their fears for their future, but at the same time we mustn’t make sure that we muddy it so that people that are going through a grieving process, when you do become disabled, you grieve for the person you were and you grieve for the future you’ve lost and at that moment if someone offers you the chance to take your own life, you may take it and that’s really scary. If you take your own life, fine, but I don’t think we should say someone else can help you to die.

A: Well hopefully you wouldn’t just be able to go and say that, they would say, no you’ve got to go to counselling and all that first.

B: Well I would hope so yes but no one gave me any counselling, I had no assistance at all. It really was a case of just get on with it and I think that that’s one of the big issues that we face. I have lots of disabled friends who I’ve been in contact with about this and I remember one case especially. She was saying how much she was in favour of it and then it transpired that part of the reason was that she’d been trying to get her doctor to give her proper pain relief for three years and he wouldn’t do it because he was worried that she might become addicted to the pain meds. Now if you have chronic pain, who cares, give me the medicine! I’ve had these rows with doctors myself, I’ve been taking pain medication for longer than most of my GPs have been qualified, so I know more about my medication than they will ever know, but yet they feel that they have the right to say what I should be doing. I think that’s something else that we need to fight and I think that disabled people and ill people and everybody has access to all of the palliative and preventative care that they have to make sure that their life is comfortable.

H: Yes, absolutely. We have something here from Dianne, thank you very much Dianne. She says how do you guarantee that people were not pressured into assisted suicide or worse still assisted to die without their consent as has happened with a Liverpool Care Pathway and do not resuscitate orders.

A: Well people say that about the Liverpool Care Pathway, but mostly it is done with the permission of the person who’s there and with the family. There are very few cases where it has been without their knowledge, but it’s another thing that’s being tried out and tested and hopefully enough safeguards will be put in place for it to be a safe system.

H: Mik, you don’t look like you’re agreeing with that.

B: One of the things I find very funny about this whole discussion is there’s really no facts. It’s assisted death. How? And there’ll be all these protections in place. What? No one every says what protections, what processes we’re going to use, how will the doctor help you, how will he kill you, what will he use? It’s all a bit “do do do” and it’s kind of words, assisted death, but without being funny, if you’re going to make a law I want facts, I want deep and detailed facts before we even proceed.

H: But surely that will happen, surely that will happen?

B: Well as you said 77% are in favour of it, they don’t even know what they’re in favour of. They know they’re in favour of not being in pain when they die. Well everybody’s in favour of that. Surely the other 23% aren’t like oh no I quite like the idea of being in agony when I die. No, we all want to die in a nice way, it’s just when we have this debate, can we have it with facts? I think that that’s the big fear for all the people like me who are against the idea is – I still don’t know what they mean. I still don’t know absolutely what things are going to be in place. Do they mean that they need to have video wheels or what I don’t understand what it is and in an era of technology, you can’t really say that you’ve got a letter because you know, word processor and we’re done. Without being too flippant, I just want to know what the detail is and we’ve seen in television and even books, everywhere you go, there’s facts about it, but the media and everyone seems to be really weak on the detail, but there’s lots of emotion. There’s lots of, here is Paul Lamb, he’s suffering, here is Tony Nicklinson, he’s suffering. Yes, but what are the facts, what do you want? I want to be assisted to die.

A: Well surely that’s why it’s so important to do your living will. You get the chance to say what you want and what you don’t want as well.

B: So what is it, do you have a massive morphine overdose or what is it?

H: It can’t be a free-for-all, you want things put into place.

B: Because it’s law, the thing about law is that you have to get it tied down, because I want to know that if Paul Lamb wins that it doesn’t pass into law that anyone with a spinal injury who’s got chronic pain, suddenly becomes liable to be killed by a doctor because I’ve got a spinal injury and I’ve got chronic pain and I don’t ever want my doctor to bring that up in my presence. So how would you word that? Would you word it so it became that it would only be raised if the person seeing the doctor raised it? These are the details and it’s easy to say yeah I’m in favour of it, but until you know exactly what you’re in favour of, what people are saying is they are in favour of making sure they don’t suffer at the end of their life and everyone’s in favour of that.

H: We are running out of time but just a quick note here from Kelly, thank you Kelly. She says, is the answer that people need to get decent counselling so they have support?

B: I think so and I think that even in Heather’s case, I think that if the medical profession and society have been more involved, I think that whatever happened at the end of Nigel’s life, it would have been a more pleasant experience to both of you and Heather would have been supported through it and I think that this is the point. society needs to stop saying, it’s the easy option and we need to say we’ve got to be there for people, we’ve got to make society a place where we’re all equal and we’ve all got the opportunity to enjoy every moment of life.

A: But Nigel had the choice of going into a really good placement especially for HP people where he would’ve had a reasonable life, it just wasn’t for him. His brother went into a really really good palliative care. They had their own swimming pool, they had their own gym, a little café in the grounds and he settled there, but at the end of his time when he couldn’t swallow, he still starved to death over about eight days. So he didn’t have an easy death but he chose to go into palliative care and Nigel chose not to go down that path. It was what they both wanted, they both wanted different things so it does come down to an individual person.

H: Absolutely, so Heather, what are your final thoughts that you’d like to share with the viewers?

A: It’s very isolating for the family to have to help someone and the law does need to be tightened up to show what safeguards there are. It’s not really oh I’m just going to help someone in my family to die if they want to, it’s got to be far more legalised than that but you do need the proper legal protection in there because at the moment it’s very woolly the law.

H: And Mik, final thoughts from yourself.

B: I’d probably agree with Heather in that I think hopefully finally this will start a discussion that means we can end up somewhere where we’ll all agree. I don’t think we’re there at the minute so I do hope that the high court cases don’t necessarily succeed. The bill I’m not so sure about but I do hope the high court cases fail.

A: We hope the bill succeeds.

H: Thank you to both of you, we are out of time, my thanks to Heather Pratten and Mik Scarlet. If you want to find out more information go to benenden.co.uk/media-centre thank you for watching, bye.