The End of Life Choice Act

Here in New Zealand we are being asked to vote on an act of parliament, the End of Life Choice Act, that, if passed, will allow those with only months to live to choose a managed death ushered in by professionals. At first glance the Act is an obvious extension to our emphasis on every person, within reason, being able to live as they wish. There are however, two images I can’t shake when I imagine this Act passing.

The first is the profound loneliness of the person concerned who, according to the law, must carry full responsibility for this choice. There is a passage in the book Things seen and unseen by Nora Gallagher where she writes of her friend who is in the final stages of a long illness. Lois has been given the option of surgery that may, if it goes well, extend her life by months. What I found heartbreaking about the passage is not Lois’s imminent death. It is the demand placed on her to make a life-or-death decision that is both hers alone and excruciatingly public. She must show her hand when she has no clear sense of what it contains. Gallagher writes:

I offer to pray with her. God help Lois make this decision, I think as we pray... She needed me to go out on a limb with her and be responsible, with her, for making what may have been the wrong decision. She needed me to help carry the load. I didn’t. That had nothing to do with respecting Lois’s autonomy; it was about washing my hands. We pretend to respect the autonomy of people who are sick or dying; in actuality, we hang them out to dry. I see something then… faith requires me to get down and dirty, to risk making a mistake for the sake of another, the join the awful intimacy of Lois’s suffering.

I see myself – the kind of person who, if I were soon to die, would feel the sickly-sweet offering of the End of Life Choice Act. I imagine the irony of knowing that my life is being taken from me and having to make yet another decision. I imagine wanting, as always, to do the right thing. There, there Niki, I want to say to my future self and others like me, just let it be. This is bigger than you now.

The second image is of the medical professionals who deliver the fatal cocktail. In Dancing with Mister D Bert Keiser, a physician who works at a Dutch hospice, writes of the terror he feels in the minutes between a patient taking the lethal medicine and dying. What if they change their minds? Of course he has chosen his role but still, there is something disconcerting about the state empowering some people to end the lives of others. I contrast this with the more ambiguous, collective decisions that may happen on the path to death. I’ve always suspected, for example, that we gave our mother too much morphine in her final days. We were prompted by having a supply we could control, her inability to tell us how she was feeling, and not realising that morphine slows breathing – the very thing she was finding difficult. Do I regret this? No. What I remember is the doctor talking with our mother about how hard, and for how long, she and those around her had been working at this. I sensed in this permission to no longer strain. Our mother’s death wasn’t elegant and there were aspects I regret, but it was a transition that involved many people – not a pre-planned moment delivered by a single agent.

That our mother bore it all, made me fear death a little less.

At face value, the End of Life Choice Act is clean and tidy – there are people who want to die, we have the technology to provide this and so why not? But the existence of a choice has far deeper implications than simply providing for those who want to make that choice. Inevitably it will change how we manage disease and imminent death. It makes living with suffering a little less noble, a little more irrational. I am not saying that people should fight until the end. Giving up, it seems to me, can be the obvious step – refusing the surgery that repels you, no longer eating, perhaps even stockpiling the necessary drugs to end your life if the moment comes. But letting go of life as a private act that emerges from the situation at hand, is very different from receiving a planned and medically delivered death.

I’m not sure if I’ll abstain or vote no in the coming referendum. I’d welcome hearing others’ views on this issue.

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