Comment: 7 November 2024 marked the third anniversary of the End of Life Choice Act coming into force. A unique aspect of our assisted dying law is that people need to specify, in advance, the time and date for their death as part of their application. Of course, the date can be brought forward or pushed back, or the application can be withdrawn.
In other countries, things are done slightly differently. Assisted dying medication is either given to the person to take at the time of their choosing (in contrast, medicine administration is always supervised here) or the person lets the assisted dying provider know when they are ready.
So how do Kiwis who apply for assisted dying choose a date with death? When is the right time to die? And is there a right answer?
Over the past three years, I’ve been researching these questions. During my research, I’ve interviewed seven people applying for assisted dying, 10 family members, and six assisted dying providers. I was fortunate to speak to applicants on multiple occasions in the lead up to the assisted death (for those who went through with it) and spoke to family and providers afterwards.
Participants used various ways to describe having to choose their date for assisted dying—from very confronting, to just a date on a piece of paper that could be changed, through to a huge relief because they knew there could be an end to their suffering. Finding it surreal to choose a time to die was common.
Having a date in place can be beneficial for people to give them time to prepare, get their affairs in order, and gather family and friends around to say goodbye. These things occur with any expected death but can take on greater meaning when there is a planned date for death and can help people become as ready as they can be for such an event.
When choosing a date, participants in my research found themselves considering the meaning and purpose of life and death (existential questions), when they and the people around them would be ready (social questions), when their assisted dying provider would be available and paperwork approval times to factor in if they wanted to change the date (practical questions).
Some described having an intuitive sense of when the right time would be. The right time balances everyone’s needs and wishes. There can be a wrong time—if you leave your application too late or if you choose your date too far away and either die beforehand or lose your capacity to give consent on the day planned for receiving assisted dying.
Whatever their wishes, people had thought about how to spend their remaining time and planned their last day —their favourite meal or drink, their favourite dress, which room, what people would be looking at and listening to in the room, and of course who is present and who knows what’s happening. Planning the date sees 80 percent of all assisted deaths in New Zealand take place in a private residence.
A few people decided not to go ahead with assisted dying. One person decided hospice care was meeting her needs, though her partner disagreed in retrospect with how her death was managed. Another person chose to pursue active treatment instead. Her daughter also thought that, in retrospect, assisted dying may have been a better ending for her mum.
In another case, some family members disagreed with the date chosen by their mother for assisted dying because they had other life events on at that time. However, the mother felt it was the right time and she had to be the decision-maker under the assisted dying process.
For those whose relative went ahead with assisted dying, the family members were deeply grateful that this choice was available. The providers also found it meaningful to assist someone with their last wishes.
Potential changes to the End of Life Choice Act are being considered by the Ministry of Health as part of its three-year review of the legislation, which concludes this month. Although picking a date for assisted dying isn’t the biggest issue in terms of improving access to assisted dying for eligible people, it is certainly a significant challenge. Allowing the person to nominate a date closer to when they’re ready, rather than in advance, would be one way to improve the experience of those going through the process.
This article was originally published on Newsroom.
Jessica Young is a senior research fellow at Te Herenga Waka—Victoria University of Wellington. She received a post-doctoral fellowship from the Cancer Society New Zealand to conduct assisted dying research. She also receives funding from the Health Research Council to research assisted dying and conference funding from the End of Life Choice Society of New Zealand.