29 Sep Dying Wish – NZ Woman’s Weekly Column
First published in the NZ Woman’s Weekly, 5 October 2020…
I have been a close witness to five deaths – two very special friends who died of cancer in the 1980s, and then family members in recent years, including my father who died in January 2017, and my mother who died in June last year.
I’ve also been present for several births – I was very involved in my daughter’s birth 27 years ago (I’m still tired when I think about it) and I was holding her hand when each of my grandchildren were born.
What I’ve learnt from those experiences is that the beginning and the end of life are similarly significant events. There’s nothing simple about arriving on the planet, or about leaving it and, no matter your role, being in the room when those things happen changes you forever. My mother, Donna, and I talked about it a lot over the years – how these twin events are the bookends of life.
We spend a lot of time planning for a birth – talking about it, preparing ourselves, writing a “birth plan”, doing everything we can to make it as healthy and comfortable as possible for the mother and baby. We will also intervene to make a birth happen days or weeks sooner than it might otherwise to make it safe and bearable, with the least trauma and suffering. My daughter, for example, was induced six weeks early because getting her out of the womb and into the world was better than letting nature take its course.
It seems right to think about death the same way – talk about it, make a plan, be prepared to intervene to make it as free of pain and as full of kindness possible.
When my mother, Donna, was given a terminal diagnosis in 2018, she said with her typical courage and clarity that she was not afraid of dying, but she was afraid of pain. We knew from other deaths – particularly my father’s the year before – that no amount of palliative care is a guarantee there won’t be suffering. We have known friends and family who have taken their death into their own hands by refusing food and water because they felt they had no other choice. Donna said she didn’t want that. She wanted a final chapter that reflected the rest of her story which was a life lived with elegance and dignity.
Our conversation about end-of-life choice had started years before, and we owe a debt of gratitude to Lucretia Seales for getting us talking so openly. In 2015, Lucretia mounted a legal challenge seeking the right for a doctor to help her die without being at risk of criminal prosecution. I think everyone’s heart broke a little when the courts didn’t allow this, but Lucretia did a remarkable thing in allowing her death to be part of our national conversation. I will be thinking of her as well as my mother when I vote “Yes” on the End of Life Choice referendum next month.
Where you put your tick will depend largely on how robust you think the safeguards are. There are doctors and palliative care specialists in both camps, plus people with terminal diagnoses or vulnerabilities because of race, disability and socio-economics who do and don’t support it.
In a nutshell, you must be terminally ill with less than six months to live and experiencing “unbearable suffering” that cannot be relieved to even begin to be eligible. The law is intended to put the patient at the centre – patient-led and with the option to change your mind at any time. Very few of us – perhaps only five percent – will ever need this law or be able to use it, so it’s about giving those people a choice. The government’s website will be your most trustworthy source for clear and unbiased information: https://www.referendums.govt.nz/endoflifechoice/index.html
We did manage to give Donna what she would call “a good death”, though we could never be certain and there were moments when it was a close run thing. There was a tension at times between what health professionals needed to be seen to do in terms of medications and protocols, and what the patient would choose to be eased off the planet. Donna would have had a different death if she hadn’t had a constant advocate, and not everyone can arrange that.
We need to talk about death more – especially the good deaths, and what it is that makes them good. Think of the people you love, and what you would want their last days to be like. Most of all, think of the things you most like about your life – being independent, making your own choices, living with integrity and dignity, being able to leave the party when you have had enough – and how good it would be to have a final chapter that reflects the best of your life’s story.