St Joseph’s Hospice was founded in 1967 by Cicely Saunders in order to help cancer patients for whom medicine had nothing else to offer. Often these patients would suffer from the effects of their illnesses and died in miserable circumstances which were distressing to both patients and their families. Over the next decades hospice/palliative care services developed all over the world, and practitioners pride themselves on being patient-centric. Hospice/palliative care staff value their communication skills, and listen actively in order to find out what their patients need. They try to offer bespoke care customised to the individual patient and their family.
In New Zealand on 07 November 2021 the End of Life Choice Act 2019 will be enacted which will mean that people with less than six months to live who have intolerable suffering and fulfil the criteria can legally access assisted dying services. New Zealand Hospice and Palliative Care organisations around the country have put forward a viewpoint that they are not supportive of assisted dying, and have largely not engaged with the subject at all despite it becoming legal and available in five days’ time.
What if NZ Hospice/Palliative Care was to try to empathise with someone with the opposing point of view. What if it was to put itself into the shoes of a person considering accessing assisted dying services? What might such a person have to say to them?
I didn’t know what was going on, every day I felt more and more tired. I tried going to bed earlier, but no matter how much sleep I had, I still felt exhausted. It started affecting my work, I had trouble concentrating, and then I really got sick.
One day I collapsed at work and had to go to the hospital via ambulance. I ended up staying there for two weeks. I had many blood tests, X-rays and scans, and I was started on various medications some of which had unpleasant side effects. It seemed that every few days that there was more bad news, and that I felt a bit less like myself with each passing day. My body just didn’t feel like my own any more. Even looking in the mirror I hardly recognised the haggard, older person who stared back at me. I had lost weight, but there were many other losses still to come. The doctors told me that I had a terminal illness, and as soon as I heard the words, I couldn’t hear anything else for the next 10 minutes, which seemed to go on for much longer. I was jolted back when my partner asked a question, and was given the answer, “less than six months.” Crap, I’m going to die.
I never went back to work again, and I’ve had to access a sickness benefit from Social Welfare. I had worked hard, and it was really hard to not be physically able to work any more, to not be able to contribute to society. Pride took a big hit, as did our family finances. We had wanted to fund the kids’ tertiary education, but that’s not gonna happen. The losses keep on piling up, and each one needs to be grieved for. I can’t walk without a stick now, I need help with showering. It was really hard to let a total stranger into the home, us having always been very private people. Now this person helps me wipe my butt everyday, and washes my feet.
This was all crappy, but then the pain in my neck started. Sometimes it feels as if I’m being ripped apart from the inside. That’s how it feels in my heart as well, that choices keep on being taken away from me, control keeps on being lost. My doctor gave me an Advance Care Planning booklet the other day, and I’ve been too scared to open it. What is it, a Lonely Planet guide to death and dying? Apparently it will help to let people know what’s important to me, what I want, or don’t want.
What do I want? I think I want out, this is no way to live a life. From November 7 assisted dying will be legally available in NZ, and I think that I want to legally access my rights to it. The members of parliament voted for it, it went to a legally binding referendum and two-thirds of voters said Yes.
What do I want from health care people? I want to be listened to, really listened to, and not lectured. I want to be supported to make my own choices. I don’t just want a fair weather friend, who will support me through easy times, and only through easy choices. Sometimes I might choose things that you don’t agree with or believe in. I have a right to make those choices because it is my life I’m dealing with, and I need to do what’s right for me. You’ll only be involved in a small part of my life and then I’ll be gone, but I have to do the right thing by me, and by my family. They will be the ones who survive my death, and who will have to live with my choices, you won’t be there afterwards.
Things are bad already and I know they will become much worse. Do you honestly believe that you can ease all of my suffering? Because I don’t believe that you can. I don’t trust you, and you won’t talk to me about something I think is important. No-one can guarantee that I will not suffer and how dare you be so arrogant as to define for me how bad my suffering is. Can you actually feel what I am feeling every day? No you can’t. When it comes to my suffering, I am the expert, not you, no matter how much specialist training you have had.
Who am I? I could be anyone, I could be your partner, your parent, your child, your friend, if you are unlucky, I could be you.
You doctors hide behind your Hippocratic Oath, which has been around for over 2000 years. Its all Greek to me. What would the iconoclastic mother of Hospice Dame Cicely Saunders be saying if she were still alive? Would she want Hospice care to be firmly stuck in the 1960s, or set in concrete in 2008, to not change with the times?
What I don’t want? I don’t want to be judged by you. I don’t want to be dumped when I need you the most. I don’t want unsolicited advice, I already have too many people telling me what to do, instead of asking me what I want to do. Where’s your empathy for me, can you try to understand what I am going through? Where’s your compassion, you see me suffering but don’t act, but try to shield yourself from my pains.
Of course I’m angry, of course I’m afraid, and you still want to take away something that the law will entitle me to?
F#*k you, either you are on my side or you are not. I am running out of time, so don’t you waste my precious time.
If you are going to abandon me, then you can F#*k off.
Totara Hospice https://www.tvnz.co.nz/shows/q-and-a/clips/hospice-explains-why-it-will-offer-assisted-dying
Outside of Aotearoa/New Zealand the interview is available here: https://www.youtube.com/watch?v=ztFwS6hBDrs