Monday, 17 September 2012

Time To Leave ...

mawhera te awa, today I am sharing it with her

Every Monday just before 11am, she arrived at our office to do her two hour stint on the reception desk. She and her walking frame shuffled slowly up the ramp, her husband walking close behind to catch her if she stumbled. Then she'd wait, slightly impatiently, while he picked up the doormat, because she was unable to step onto it, and hold the door open for her. She always came in the door with a cheerful smile, "hi Iri, how are you, have we been busy today?" She settled down behind the desk, her husband bringing her a glass of water, "I'm alright now, you can go", she'd say to him. sometimes giving instructions about jobs she wanted him to do. Then he would go and sometimes I would be in a hurry with things I wanted to do so I would just leave. Other times I might hang about a bit and we'd chat.

She told me the story of her awesomely brave daughter who brought joy to people around her, yet had the bad luck to be stuck with a mental illness which made her own life a struggle and an endurance. This very grown-up, adult woman decided her quality of life was so badly stunted by the unasked-for illness that she wanted to leave. And, of course, our laws don't allow for us to receive assistance to complete our lives by our own decision. Even if we have a terminal illness we are expected to suffer every painful ragged raspy breath until our bodies finally give it up. If we have a non-terminal illness then our only respite might be when we can close our eyes and sleep. And wake up the next morning to continue life in a body that cannot respond to the commands our brain wants to give. Like get up, brush your teeth perhaps. Or a brain that doesn't work properly and spirals us down into the depths of despair, or up into irresponsible highs, or maybe we are tortured by mad, bad voices.

All this is apparently supposed to be character-building. Morality even. To what end, I ask? To be inspirational for some other healthy sod reading ridiculous inspirational emails or blogs, then going forth into our days to smell the roses? Really? Or to inspire some other struggling soul into carrying on her/his uphill struggle? I'm dammed if I can work it out.

Yes, I know there are people who, given a choice are happy to continue with life, no matter what brickbats are thrown at them. I applaud them, I really do. But it is about choice. It all hangs on that. It is about us all being considered as adults, able to make decisions about our own bodies, our own lives.

So, one day when in her twenties, and after a lot of very considered thought (and I think there had been at least a couple of previous attempts), the awesomely brave daughter wrote a long and beautiful letter to her family outlining what she was doing and why, "don't grieve for me" and walked out, into the Pacific Ocean.

I think this daughter must have been very like her mother. Pragmatic, down to earth and so very, very brave. Of course the mother grieved for the daughter, but she understood the decision. And respected it. This mother, this strong woman who relieves me in the office every Monday, has Multiple Sclerosis. Her father also had Multiple Sclerosis so she watched him die, watched him choke on his food, watched him struggle to breathe, watched him die in pain. And she made her decision. That when life became too onerous, too futile, when nothing would help anymore, then she would refuse further intervention. Right now, today, as I type, this is what she is doing.

She has refused any medication, she has refused a further surgery. She just wants to come back here, to the wee geriatric hospital in our town, to die. They are trying to do that for her, this morning. I am hoping she is on her way up here now.

It should be easier for her. At the moment of her choosing she ought to be able to finish it. Right then.

We don't get to choose to be born into this life. I think the least we can have is the choice to leave it, with dignity, if we want to. We do this for our pets. Why not people? If we have made a considered decision it should be respected.


  1. It is religion, I think, that is the author of this obscenity which is unnecessary suffering. I was very moved by your story and I like to think that as the daughter went under the water she felt, in her final moments, a relief and a clarity. And perhaps the mother will go easily too, but that is a fairy tale.

    If we have made a considered decision, it should be respected.

    1. Thank you Benni, I agree. It's the next morning here and I am waiting to hear if she was able to come back here to her home, if she made it through the night even, and if I will be able to visit her briefly , to say goodbye.

  2. First let me say how sorry I am that you are losing a friend in your life, Iri Ani.

    I quite agree that people should be given a choice to leave this world with some measure of dignity. The state I live in has one of the few laws in the USA protecting the right of people to a doctor's assisted end-of-life. It sounds like your friend is ready for a hospice situation where she can not be pulled down into unimaginable agonies.
    I also think you put the case as plainly and succinctly as it needs to be--everyone also has a right to live for as long as their body holds out if that is what he or she chooses to do. But to force people to be an "example for others", or a "hero" unwillingly is plain wrong.

    It's true what you say about pets. We and our vets know when our four-footed friends would only suffer if we prolong their lives. If a person is in their right mind, as your friend has and considered all aspects carefully, then a doctor or health specialist should be honoring that.

    1. I am impressed with your state, Doug, for its very decent and humanitarian laws on this subject. I wish all our politicians would follow their lead.

      What really infuriates me is that whenever we have a bill about voluntary euthanasia put forward, the MPs are always permitted to vote according to their own consciences when surely they are supposed to be representing us, the constituency. In Waimakariri we are overwhelmed with three MPs, (one electorate and 2 list) who all insist they are representing us, yet not one of those sods has ever actually thought to make any survey asking us our thoughts on this issue. Two of them, Clayton Cosgrove and Kate Wilkinson (Labour and National) are actually extremely cagey on the issue. they don't even want to tell us which way they will vote. At least the fatuous and foolish NZ First MP Richard Prosser is more upfront. He will vote against voluntary euthanasia because he doesn't believe in it.

      I always remember what my father's doctor said when my father was dying from cancer and was asking what was going to happen. He said to my father, "if you were a dog, we'd be allowed to take you out and shoot you when the going got too tough, but sadly because you are a human we have to make you suffer. I'm sorry."

    2. Oh, that's heartbreaking about your father, Iri Ani. I'm sorry.

      The thing is politicians who don't have the guts to do anything but cagey about issues like this should step aside. Of course Cosgrove and Wilkinson likely won't if they are like the run-of-the-mill sort of politicos we have here. They should state a case since this is an issue likely to effect so many families.

    3. I sympathise with your situation, but please don't impugn my reputation on the basis of your own ignorance, misinformation, or indeed mischeivous agenda.

      Our Party's policy is to call for a two-year period of nationwide debate and discussion on the issue of euthanasia, followed by a binding referendum on the matter.

      I have said, several times, that subject to certain criteria being met, ensuring the rights of everyone involved, that I personally will vote in favour of informed voluntary euthanasia, because I do believe in the right of the individual to choose.

      Your claim to the contrary is completely wrong and probably defamatory, and I have no idea how you formed it, because you have certainly never asked me.

      Describe me as you wish, but don't presume to put words in my mouth, especially when they are manifestly incorrect.


      Richard Prosser

    4. Actually Richard, I think my comment above was more around the idea that, at least (despite the fact that I disagreed with your stance) you were being upfront in your voting agenda. Unlike your also-named mealy-mouthed competitors for the title of Waimakariri MP. I thought I had read your comments in your own column in the Northern Outlook but having checked back I see your comments were around voting against Gay Marriage. Perhaps I made a wrong assumption that people who are against individual rights of choice for one group of people are often consistently against the rights of choice for other groups of people.

      I thank you for your correction. Readers here will now know where you stand and the NZ First Party policy as well. Which is the way it should be.

      You will note that the post on which you comment started out talking about a friend. I have watched both my parents die. On the issue of voluntary euthanasia I have no mischeivous (spelt mischievous btw) agenda. I am completely serious. We - all of us - as responsible adults should be allowed the right to choose our own manner of dying.

      My biggest issue would have to be around conscience voting (on any issue) in Parliament. All MPs are voted into Parliament to represent the people and therefore all policy should be in the public arena before election time. Or MPS could survey the people in an electorate and vote according to the wishes of the people. But to vote on bills like voluntary euthanasia, gay marriage, alcohol reform etc as the MP's conscience dictates, is to take away the democratic rights of the electorate.

  3. I could easily have imagined this happening to my own mother---so had so many problems at the end I was afraid she would ask for help to leave. Thank God she just went peacefully, but at least she would've had the chance to discuss options with her doctors.

  4. I think you raise some very important questions here about choice and sovereignty, essentially the right to complete suicide and I agree (like I suspect most people would agree) that in the circumstances you describe people should be supported in their decision to end their life.

    However, I have also been on the 'other side' of this so to speak, in that for over 13 years I did 24/7 mental health crisis work and deliberate self harm aftercare and met many people claiming that they want to die, hundreds in fact.

    It also happened quite rarely that I would see someone in a similar position to the person you are describing, a terminally ill person whose carefully planned suicide bid had gone wrong and who had survived.

    The dilemma for me was that it was my role to make a judgement about the mental state of the person and the risks to their health and/or safety for which I am legally responsible and also I hold some legal powers which means that I make the final judgement on whether people meet the criteria for compulsory admission under the Mental Health Act....that's my call for which I am personally liable in law.

    I also have a common law duty and a professional duty of care to preserve life... plus my working day is founded upon a whole raft of domestic and EU statutory obligations and duties to weigh up and consider, human rights, mental capacity, mental disorder and more general powers and duties under a patchwork of Acts of Parliament.... I make my own decisions but they are made against this legislative and procedural backdrop

    A person in these failed to die circumstances now has the added devastation of that failure to cope with on top of everything else.

    My solution was to be totally honest about what I am employed to do. To say as a human being I can fully understand and accept what they are saying but as a professional I might have a couple of things that could help them through the whatever happens next when they are discharged from hospital.

    This negotiation didn't happen in ten minutes of course this was the result of a conversation that would last usually somewhere between 1 and 2 hours (someimes longer) in hospital as soon as the person was medically fit to make an informed decision about whether or not they wanted to talk to me.

    The general take-up rate for deliberate self harm aftercare (usually within 24 hours of the event) in my experience is more than 90 per cent.

    So whilst respecting their point of view I would explain that could only arrange the offer of services that might help with certain things and could bring about improvements in their overall quality of life and in my experience those people always took up those services,it was never refused.

    Perhaps they did kill themselves sometime in the future, I don't know?... But I DO know from not having to attend any inquests that, if they did kill themselves... it must have been a long time after I saw them or I would be compelled to give evidence and wasn't. So either they died "naturally" in due course... or they lived a lot longer than was predicted.

    So I think that there are clear cut cases where people should get support to die, but I suggest that these are far fewer in number than the vast majority of cases where people should get more support to live...for as long as it is viable and that's historically where I come in.

    I do less crisis work nowadays but I still do some and I remain involved in these sorts of activities.

    Actually I am exploring innovations in democratising mental health and wellbeing opportunities and supporting increased recovery, reablement and personal choice and control for service users, although I hasten to add that it wasn't One Flew Over The Cuckoo's Nest before :-)

  5. I think the counselling part to all of this is so, so very important Aaran. I have a very good friend here who works with the bereaved families of people who 'complete' suicide as they call it now.

    There are indeed lots of people who say they want to die and really all they need is attention because they are hurting so badly. Perhaps some of those even suicide 'by accident' while trying to get that attention, others in cultures where guns are carried in their handbags may blow themselves away (and sometimes take others with them) without even giving themselves time to think anything through.

    I think what that you make some extremely important points here and I would expect that once people are given the opportunity to decide for themselves, many may indeed opt to live as long as they are able to be kept comfortable. In effect, that is really what my friend that I write about has done. Now she could opt for further surgery but to what end? Not worth it, she says, and has refused further treatment apart from, obviously, pain relief. And at some point her body will shut down, slowly, with her family sitting by, watching and waiting, and upset to see her struggle. Which is not how she wanted it.

    She wanted to choose her manner of dying and to die with dignity. I think that is a right we all should have. With support and decent counselling. A lot of people will choose to carry on, I think, as you suggest and that should be their right also. The issue here is about choice. Our choices and our rights over our own bodies.

  6. She left us on Saturday afternoon. Rest in Peace.

  7. So the end of this story has come, your friend's struggle is over and can now be viewed as the closing chapter in her life story. She took control of her fate and although of course I never knew her I salute her for it and pay tribute to her willpower from afar. Thanks for taking-up this very important topic here Iri, it gives scope for discussion of some of the more sensitive issues in life and as a blog, I think it raises the game.