BBC Radio World Have Your Say Transcript 11/3/14
Emma Wilson: Now the debate about assisted suicide, or the right to die is not new, but the death of a 29 year old woman, Brittany Maynard, who decided to take lethal drugs to end her life in the US after being diagnosed with terminal brain cancer, has revived that difficult debate, now Brittany just before she died on Saturday she posted a video on You Tube, it has been watched over 10 million times, and in it, she explains why she decided to end her life in this way.
Maynard’s Voice: I plan to be surrounded by my immediate family, which is my husband and my mother, and my stepfather, my best friend who’s also a physician, and probably not much more people…um…and I will die upstairs, in the bedroom that I share with my husband, um, with my mother and my husband by my side and pass peacefully with some music that I like in the background. I can’t even tell you the amount of relief that it provides me to know that I don’t have to die the way that it’s been described to me that my brain tumor would take me on its own. I hope to enjoy however many days I have left on this beautiful earth and spend as much of it outside as I can surrounded by those I love. I hope to pass in peace…
Emma Wilson: And George, let me just introduce you to Diane Coleman whose with the charity Not Dead Yet. Welcome to you, Diane.
Diane Coleman: Hello
Emma Wilson: This is a question for you both, what is your reaction to the death of Brittany? George, let’s start with you; what did you think after you heard the news?
George Eighmey: Well, it’s always sad when somebody dies, and such a young, vibrant woman; intelligent, articulate, but she was facing death, death was imminent in her case, she was very valiant and brave in what she did, and I am sad that she’s gone but at the same time she passed doing it her way, and I think that was very comforting for her and her family.
Emma Wilson: Diane?
Diane Coleman: Well, my heart goes out to her family at the loss; that just you know, she took her life two days ago, but our concern, the disability rights community’s concern in the US is about the public policy of legalizing assisted suicide, and the danger that that law poses for so many other people who do not necessarily have the loving family that Brittany had but face very serious risks, and it’s that public policy decision that we’re concerned about; we oppose legalizing assisted suicide.
Emma Wilson: I should just explain a little bit about both of you; now George, you have worked with terminally ill people; you have fought for their rights, to end their lives, and Diane you suffer from neuromuscular disabilities yourself. I wanna hear more about that fear that you have. Is there evidence to suggest that people are misusing-whether it be assisted suicide or euthanasia laws-to target people with disabilities? I mean here we’re talking about someone who very clearly had a terminal illness-a very aggressive kind of cancer, George?
George Eighmey: Well, first of all, in response to the opposition of Not Dead Yet and uh, we passed an amendment to the law back in 1999 because we knew that uh, there was never going to be way that we could satisfy all of their concerns, but we did pass a law that simply said nobody with a terminal diagnoses can use the law based solely on their-a-I mean, their disability-you must have a terminal diagnosis that two doctors have determined will end your life within six months. It is not targeted in any way toward the disabled, I have been a champion for disabled individuals all my life; I’ve passed legislation when I was a legislator, protecting their rights making sure they have access to all the services that they need, so it is not in any way uh a fear that should be concern-now we have almost 16 years of data showing that that is not the case, that we have not in any way targeted people who use the law do so independently, without coercion, they are fiercely independent individuals who love life, and would love to live as long as possible, but they have decided that, on their own terms, they wish to end their pain and suffering.
Emma Wilson: Diane, let me ask you about the subject of choice. It’s something that’s coming up again and again and again on twitter, on Facebook, you know, people have read the story and have been commenting about it-shouldn’t there be that choice, I mean, we allow people to euthanize their pets when they’re seriously ill; on the verge of death, if they’re in pain, should people not have that choice?
Diane Coleman: Well, I really hate to see the pet analogy brought up, because all the data on pet euthanasia indicates that there are many other reasons than mercy, why people euthanize their pets. But I think it’s probably more important, given the limited time in this discussion, to talk about what the Oregon evidence does and doesn’t say. One thing we know is that in the Oregon reports they point out the distance of time between when a person made a request for a lethal prescription, and when they died; and the length of time is up to 1009 days, while the prediction of the doctor was that they would die in 180 days. What the data does not show is how many people exceeded that 180 day, terminal diagnosis; in other words, how many people were not in fact, terminal when they were determined to be so. We do know from hospice data is that about fifteen percent of people don’t…you know, they live beyond their terminal diagnosis. That means that those individuals were not terminal, but there’s no consequence to making that kind of diagnostic mistake. In addition, the people who are-there’s an indication or a statement being made that there is no indication of coercion or abuse, but what we can see in the data is that in about half of those cases, there is no independent witness, no medical provider at the death, and in those cases we can’t actually know if the drug was self-administered or if the person consented at the time of death. Although-
Emma Wilson: So, Diane, you have a lot of questions about what mindset the patient is in, what support they’re receiving, I mean George, that’s something again that comes up, people say why help terminally ill people die, why not instead make sure they have really good palliative care, that they have much, much more support as their life comes to an end.
George Eighmey: That’s exactly what we do, um, first of all, the data shows that over 95 percent of people who use the law are enrolled in hospice, in fact, the 1600 people that contacted our organization when I was the executive director we would always say, are you in hospice, are you getting palliative care, our goal is not for you to use the law, our goal to give you options at the end of life, and we know that if you get enrolled in hospice, or get palliative care and good medical care, you may decide that the quality of your life is acceptable. And it’s proven out over and over again, of the 1600 people who died when I was there, only about 450 of them used the law, about 700 of them had the medicine, and so they don’t use the medicine simply to end their life willy nilly. People who live longer than six months is proof that in fact they live as long as they possibly can-we all want to live as long as we can. Family members encouraging one to have alternative medicine, to live longer so no, the data actually proves that we encourage people to live as long as possible, and they do.
Emma Wilson: Let me bring in John Kelly from Boston. John is a colleague of Diane Collman’s; he’s also with the charity Not Dead Yet. Welcome to you, John.”
John Kelly: Thank you very much, Emma.
Emma Wilson: Um, John, can you…let’s just step away a moment from the debate itself. Now you also have a neuromuscular disability, you’ve used a motorized wheelchair since you were eleven, tell us some of the issues…”
John Kelly: Uh, Emma, sorry, I have a spinal chord injury, I use a motorized wheelchair that I move with my mouth, and I’ve been disabled since I was 25.
Emma Wilson: I apologize, I had that wrong, thank you for correcting me. Can you describe to us some of the issues that you’ve been through in terms of the issue of quality of life, the kind of care that you feel you need to live the life you want to live.
John Kelly: Well, I’ll talk about the effect on our whole group of disabled people mainly that we are constantly inundated with the idea that it would be better to be dead, that people would rather be dead than like us, that we are a burden, and indeed, out in Oregon, up to half the people are being reported, as saying they’re a burden on other people. We get this all the time, we are told we are expensive, that we are not productive; we are told that we might be of better service to other people by dying and allowing our organs to be harvested, and we are full of people who have received mistaken terminal diagnoses; some a number of times, some since birth. So we are-many of us-are survivors of such bad bad medicine. These laws-
Emma: Can-
John Kelly: are
Emma Wilson: That really-can I just interrupt you because that really surprises me that people would-that you would get this feeling that people would think it would be better if no one had to look after you-where are you getting that from?
John Kelly: Well, I’m getting it from people saying it directly, I’m getting it from the data which says that people feel like a burden, the people who are dying under this program, they are all disabled, now not every person with a disability is terminal, but everyone who is dying of a disease does have a disability. And so we see in the UK, that Tony Nicklenson, a disabled man who is not terminal is being used as the exemplar of why assisted suicide is necessary, even though at this point at least, he would not be eligible. So, when we hear talk of suffering, and dignity, and quality of life, we know that they are talking about people like us.
Emma Wilson: Well, let me bring this back to Brittany Maynard, because that’s the reason we’ve been discussing it again, it has been discussed, but we’re talking here about a 29-year-old woman..uh..uh..uh, I mean, she spoke very freely..uh, about why she was choosing to do this, you could see she had the drug, she carried it around, um, she sort of set a date, she talked about her quality of life, where she would die, um, and I just wanna bring it back to that-do you think that her case, and this question is for really all three of you-do you think that her case has had an impact on this debate, and if so, what is it? George, can I start with you?
George Eighmey : Yes, first of all I think it’s had a very positive impact, as a said before, very articulate young woman who…very attractive, and, she talked freely about her dying process and what her wishes were…that she has opened the debate, opened the conversation, throughout the world, not just throughout the united states, people are talking about what type of quality of life they want at the end of their lives, not, not mentally incompetent people, not disabled individuals, but people who are terminally ill and have six months or less to live. That conversation is necessary because it is an option. And-
Emma Wilson: Ok-
George Eighmey: just because Brittany chose that option, I respect her, but I also respect anyone who does not choose that option.
Emma Wilson-Ok, George, let me pause you there because we’re going to run out of time and I want to give Diane and John a chance. Diane, briefly, what impact has she had?
Diane: Well, she’s certainly gotten the debate back in the media but I think it’s important to look beyond the one case, um, because this is really about thousands of people, and, you know, the US department of health and human services says that 1 in 10 elders are abused in this country. 1 in 10. Everyone of those who has a terminal condition is at risk that their abusers-who are usually relatives, 90 percent-
Emma Wilson-Ok, Diane, let me stop you there because I reallywant to give John a very brief chance-John, in a couple of sentences, what impact has she had?
John Kelly: Well, she’s the face of the movement, and um she is putting out-the use of her case is putting out a misperception that terminal diagnoses are right, that at the…
Emma Wilson-John, I’m gonna have to stop you there, I’m really, really sorry but I really do wanna thank all three of you for being in touch with us, for participating in the debate-we stay online at facebook.com/worldhaveyoursay