WARNING – This post involves death and talks about my personal experience in detail, so if the subject makes you nervous, perhaps read something else on my blog.
Andrew Denton is someone I have admired for a long time because of his interview style (if you want to watch empathy in action just watch his interviews) but my admiration has gone up tenfold for taking this subject on. Andrew has gone on a journey to find if there is an answer to how we can have a better death for people who are suffering incurable diseases and conditions where quality of life is no longer an option. He’s looking for a better way to help those suffering from terminal illness to end their life. Listen to him through this conversation with Richard Fidler.
My sister was diagnosed in 2009 with breast cancer and by that time, it had spread to her liver and in her hip bone. Christina was the brainy one of the family… The eldest of 4 daughters… She had 6 languages conquered and could do mathematics to the level of an actuary, so she knew very quickly what the probability of her survival was. She used that brain to research and scour every science journal and research paper and refused treatments she knew were not of benefit to her, based on probability and the science, knowing she had a death sentence and aimed for quality of life instead. So she got 5 years more out of life instead of the 6 months they gave her to live when first diagnosed… And they were mostly good years too! Not full of pain or discomfort or endless chemo or radiation treatments. She cleaned up her diet, moved to the Gold Coast to bask in the sun and exercised and got happy. She lived her life by her terms and not her doctors (or her families). But she always knew the clock was ticking. She also knew that death could be painful and distressing… She fixated on that a lot and who could blame her. She had very robust conversations with her doctors and everyone who would listen about it.
I can remember the phone conversation clearly… The first time she told me she was going to take her own life. I think we spoke for about and hour and it was confronting. I had once attended a suicide prevention workshop that helped prepare me for clients who may express suicidal thoughts, but this was different. Christina was not depressed, she was not irrational… She was being very rational. She didn’t want someone else to decide how she should die. She didn’t want the indignity of having her partner or family wipe her bum or clean up her vomit or watch her fade into a painful puddle on the bed. She wanted out before it got to that stage. She made me swear to secrecy and I honoured that.
Christina was a complex woman. Highly intelligent, also on the ASD spectrum and had a tough time filtering her words so in the end it shouldn’t have been a surprise to me that she’d talk her plan of euthanasia through with everyone and I mean EVERYONE she came in contact with. So much of her life choices and situation was broadcast so why would this have been any different?!
In the last year of her life when things started to get hairy, I spent time with her and sat with her during doctors visits and treatments (that she finally agreed to) and I could see that every medical person that came in contact with her could totally admire her for her obvious intelligence and ability to speak technical medical lingo (most thought she was a doctor) and then she would blurt out her plans to end it and I’d see their discomfort and need to shut her down. Most didn’t want to entertain her conversation around euthanasia. Some encouraged and understood her decision but didn’t or couldn’t be seen to encourage it in public. They told her to keep it quiet, but she couldn’t, she processed her thoughts, tested her theories with everyone around her. She had oncologists in two cities and GP’s sending her to psychologists to treat her for depression only to be given a clean mental bill of health. She was not depressed. She was very logical and rational. Even the psychologists could see that.
Most people, even in the business of terminal illness, couldn’t entertain the conversation so they just wanted her to go away or be quiet about it. Just not have the conversation at all.
But Christina was not like that.
She made you think about it.
Her lack of filter and rational thought made you realise… Hey this situation is not right.
Why should she NOT have control over when and how she died?
Why should she suffer pain and lack of dignity when there were options to help her avoid that?
She was also so enraged with the association of religion to her inevitable death… Many of the hospice and hospitals that specialize in cancer treatments are run by religious organisations that advocate against euthanasia. She was frustrated that a religion, she didn’t even believe in, had control over the way she died. That she would have to suffer because of their beliefs really pushed her to find an alternative solution.
So she did.
She scammed a couple of her doctors and got a lethal cocktail of drugs she knew would cause an easy death but she was concerned that she may get these doctors into trouble. She had a huge amount of compassion for others… Even when I encouraged her to think about her own needs (yes at this point I was totally supporting her rational decision) she couldn’t bring herself to potentially affect their careers.
So she had an alternative plan… She went to a Euthanasia meeting put on by Dr Philip Nitschke and purchased a gas cylinder and instructions on how to use it.
Now, let me make this clear to all who do not know how this is done… AND THIS IS DISTRESSING TO KNOW…
This kit requires the owner to, by themselves, construct a sealed plastic bag that encloses the entire head, doesn’t allow any air flow and just allows for a tube to go into the bag in which you release this gas that makes you got to sleep quickly and then stops you breathing. Can you imagine that for a moment?
You have to do this alone.
You have to construct it yourself, because you don’t want to implicate your partner, family or friends in your death because it’s illegal to help someone die. So it has to be done by your hand.
You have to insist your love ones not be there when you put that bag on.
You have to stick a bag on your head…
You have to connect the gas and turn on the tap.
You have to die alone… Unassisted and looking through plastic.
When I asked Christina, because I knew she would know the answer, how many people actually go through with this? She said, compared to how many people buy the kit?… Not many.
I could understand why. If you’re not depressed, then everything in your mind is trying to keep you from doing what was being asked of you.
I asked her if she thought she could go through with it… She said she didn’t know.
Fast forward to her going down hill quickly…. She was in the hospital for liver problems… Her abdomen was swelling up… She looked 9 months pregnant and had to have her stomach cavity drained regularly to relieve the pressure. Her liver was failing. She was uncomfortable, in pain and over hospital visits. She was now spending more time in hospitals and with doctors and less time actually living.
She wanted it over. Quality of life was now almost non existent.
I could see her fight was gone.
It was a roller coaster ride for her and those supporting her.
She was ready and determined to end it now.
She had a plan and we were all to go along with it.
I wanted to be there for her but she said no, she didn’t want either me or her husband implicated with her death. I said it was OK if she couldn’t do it, that we’d go to plan C if that was the case.
I spent a horrible morning with my other sister waiting… Just waiting for her husband to show up (part of the plan was to have him with us on some pretense of returning a book and having a cup of tea)… I mowed my healthy sisters lawn. We kept our other sister and mother in the dark, not wanting to stress them out anymore than they already were.
We waited, we cleaned the house and finally I got a phone call from Christina. I didn’t even ask, I just said, “It’s OK, we’ll just go to the next plan”. I couldn’t blame her for not doing it… I couldn’t have done that by myself either. It seemed so cruel to me that she had to do it alone.
For every scary distressing, challenging moment in my life I had the option of having supportive family around. I could see how inhumane this whole experience was for her and all of us. It just wasn’t fair.
I had no choice but to engage with the hospice and we had her examined and admitted. The nurse who came to assess her at home believed she had weeks to live and not days as Christina thought. She was wrong. Christina died 7 days later pumped to her eyeballs of drugs and alone in a room early in the morning. While we all had been with her as much as possible, we were not able to stay over night and she was consequently alone when she passed away.
I was in bed at my sisters place when I felt her presence. It was actually the smell of her breath that came into the room and then left. I thought it was odd, because it was so distinctly her smell. Then my sister walked in not 10 minutes later having received the call from Christina’s husband that she was gone. I was relieved for her and incredibly sad too.
Anyone who has witnessed a love one deteriorate from illness or an incurable disease will know the pain of watching that person go through pain and disappear before their eyes. The pain and helplessness of not being able to truly help them other than walk along side until you cannot anymore… Those last steps in death they must take alone.
I had a beautiful dog who developed cancer and we gave him all our love and attention and when the time came, when he couldn’t get up and play anymore, we called the vet and he came and put him into a deep sleep in our lounge room and then administered the heart stopping drug. We were all there telling him it was OK, that we loved him and he died looking into our loving eyes being stroked.
I could do that for my dog but not my sister.
That’s why we need this conversation. That’s why we need to change the way we legislate how we deal with incurable conditions that rob all quality of life.
It needs to be a personal decision not tied to any form of religion. Not everyone believes in it and they shouldn’t be forced to die by rules they don’t agreed to or believe in.
It can be regulated. It can be humane. It should be a personal decision.