November 16, 2016
Ms COOK ( Fisher ) ( 21:45 ):
I rise with pride to speak in support of the Death with Dignity Bill. This has weighed very heavily on me for some time now in parliament under the previous iteration presented by the member for Ashford as a voluntary euthanasia bill. I have not prepared a speech. I thought what I would do is run through some of the things that I have been presented over the past 12 months by people in my electorate—people statewide, nationwide and internationally—and how I have managed to use my own thought processes and my experience through my nursing of over 30 years—yes, over 30 years is a long time—with patients in various types of settings.
One of the settings that comes to mind has done so because of the member for Elder's heartfelt contribution. For some years, I looked after people in an institution who were profoundly disabled. Not all people who are disabled have a deficit with their cognitive ability to rationalise where they want to be on this earth either. Many of them are profoundly physically disabled because of an illness or a degenerative medical condition which leaves them in a situation where they cannot care for themselves.
I could stand here and give you a very specific and colourful description of the reality of what their space is in a bed where they can do nothing for themselves anymore but lie there. They cannot use their bowels themselves and they cannot even do that lying in bed. They have to be elevated up into a position of gravity so that it helps to force this from their stomach. My point of telling you that colourful description, which I hope you can get out of your head before you go home, is that dignity is subjective. Pride is subjective. Suffering is subjective.
It is not for me to say the level of suffering that you are going through and it is not for me to say where your level of dignity lies, but I know from talking to hundreds of people while caring for them, while sitting with them, that there is a point at which dignity for them no longer exists. If they are in the throes of a condition which is going to leave them in a state of death at some point in the forseeable future, where they are struggling to breathe, they cannot rise their chest enough to get the air in—and the Minister for Health described the ventilator used to help people with muscular and skeletal deficit to breathe.
It is a pressure machine called BiPAP or CPAP, which blows into your throat to keep your airways patent so that oxygen exchange can take place. You lie there as a patient with that machine on, unable to move and at the mercy of that machine to keep your airways open with the fear that at any minute that could become disconnected or that at any minute you would lie there and suffocate. Suffocation for these people is one of the most terrifying sensations that they must go through, the fear of that inability to breathe when secretions build up in the chest and you feel like you are drowning. I have had these descriptions given to me over the years.
I listen to and I respect fully people's experiences they share about death, a beautiful death and a peaceful death. They do happen, and they happen, thank God, due to palliative care. Palliative care is amazing. It is not that we want to undermine, reduce or eliminate what palliative care is, but it does not always work. It is not always there for people to stop that feeling of suffering and to take away that sense of loss of dignity. Again, it is not for us to judge, it is for the people who are experiencing that themselves.
I have been challenged by people accusing us of a lack of consultation on this bill and a lack of consultation on this process. Well, goodness me, this is the 15th time it has come in front of this parliament. There has been consultation after consultation. As the Treasurer rightly points out, potentially it will come back to the house again. Somebody may well want to change what is happening with that bill. I hope it gets through, with some of the very measured and reasonable amendments from the member for Kaurna. We are all prepared to look at those things.
If it does come back here, though, I do not attest that it is always going to be to reduce what it is, in a way. Somebody might want to escalate euthanasia. They might want to make it easier. I can tell you that I can put my hand on my heart and say I cannot make it easy for people. It is not that we want it to be easy for people. We have to have the tests and we have to have the measures. It has taken us this long to get to this point. Do you really think that if someone brings an escalated bill to the house in the next few years, that it is going to be passed?
Do you really think that is going to happen? If you do, I am really sorry for the space that you find yourself in and the fear that you have about that because I do not believe that is the case. We have found it so very hard to get to this point. I do not believe that we, as a society, will accept this notion of 'slippery slope', or whatever it is that you dream up that you think is going to happen, because I just do not buy it. Like I said, this is the 15th iteration. I have watched as a member of the public and as a nurse, and I stand here, along with the member for Elder, representing our sisters and brothers in nursing.
For the people who doubt the population numbers, who doubt the level of support for euthanasia in a measured and safeguarded form, I am sorry, but you are wrong. The nursing profession is one of the most trusted professions in our world. We are the ones who sit there with patients as they suffer, as they lose their dignity, as they express to us where they are in that space of their illness. I guarantee that these people exist, that their family members exist and that the public exists. As a nurse, I go out to dinner with them and they discuss all sorts of interesting things, such as digestive system issues and the like.
But also as a nurse, over the years people have discussed euthanasia. Euthanasia is a very real and very desired place to be for some people who are suffering, people who are frightened, people who are nearing the end of their life anyway. They are not people who will be on this earth in the next 12 months. They are people who are at the end of their life, they are suffering, they want to take control of their destiny and they want dignity. Nothing we throw at them is going to change their medical condition. It is not going to make them survive.
I want to leave you with a letter I am going to read on behalf of a man called Lawrie Daniel, who, at the age of 50, was stricken with MS. He was a father of two. I am going to read part of the letter, but I am not going to read all of it. Some of you may have heard it before. He writes:
My dear Rebecca, if you are reading this it is probably because I have made an attempt at voluntary euthanasia and I sincerely hope I have been successful.
I am so sorry for putting you and the children through this, but it has been nine years since my first physical MS symptom in 2007 and you know what I have been living with all this time and what will happen in the next horrifying stages of this disease.
If I was just dealing with incontinence, or just paralysis, or just my feet and legs feeling like they are burning with cold fire all the time, or just the physical deformities from life in a wheelchair, or just the musculoskeletal pain, or just the neuropathic pain, or just the weakness in my arms and hands…spasms, or just the total mind-and-body exhaustion, I think I might have had a fighting chance, but I am dealing with all of this at once, and it is unrelenting. You and I have done everything we could possibly think of for so long now to slow or reverse this process, and I am losing the battle.
Lawrie goes on to talk about how he saved up his medication to a point where he knew it would end his life. He continues:
I had to wait until you went on respite, because I needed six to twelve hours undisturbed (closer to 24 hours if possible) and I couldn't risk you or the children—
and he had two children aged about 9 and 12—
coming into my room after I had taken the [ tablets] , and calling an ambulance. It's 15 hours between the carers coming so that was my best chance. I'm sorry to everyone for having to do it that way. I didn't want to involve the carers, but I felt I had no other option.
My arms and hands have been getting worse as you know, and I had to be able to do this for myself. I have been having trouble peeling a mandarin even, and my hands could go completely at any time. I couldn't know when next I would have close to 24 hours whe re I was undisturbed. It may have been sooner than necessary, but I felt I had to do this now.
If we had a compassionate voluntary euthanasia process in this country, none of this would have had to happen in the way that it has. I'm so sorry I had to do this , and that you are going to have to deal with the aftermath of me having to end my life and having to end it in this way. I hope you can forgive me, and that you and the children won't see this as selfish, but as self - care and...compassion , in a country where I have no alternative but to turn to self - help. I hope that this letter helps to explain why and how I took this step. Please show it to any relevant person/authority if you feel it necessary.
I love you, I love our children. I am so sorry I have had to leave you all and end my life in this way, but I could see no other option available to me in the circumstances. I ask for everyone's compassionate understanding, and I ask you all to please forgive me. You and our children helped me every day during nearly a decade of my life with this illness, with infinite loving kindness. Thank you for everything.
Rest in peace, Lawrie. He should not have had to do it by himself.