2 days ago
Assisted dying: Thoughts from the front line
Comment: When the End of Life Choice Act 2019 came into effect in November 2021, it marked a profound shift in how we approach death and dying in New Zealand. As researchers and clinicians our team felt a deep responsibility to understand how this new law was unfolding, not from the top down, but from the ground up. That meant listening to the very people who were making it happen: assisted dying practitioners.
These are the doctors and nurse practitioners who sit with patients in their final moments, who navigate complex eligibility criteria, and who carry the emotional weight of helping someone die on their own terms. They are the ones who bring the service to life. And yet, before this research, we knew very little about their experiences.
Why we did this study
The motivation behind this research was simple: to capture what was actually happening in practice. Assisted dying is a new health service in New Zealand, and many practitioners entered it with no roadmap. They were learning as they went, often alone, often unsure, and often deeply moved by the experience.
We wanted to understand their journey, not just to document it, but to help improve the service. If there were challenges, we needed to know. If there were moments of beauty and meaning, we needed to honour those too. Ultimately, this study was about making assisted dying safer and more sustainable for everyone involved, including patients, their families, and providers.
We used a 'memorable case' approach, inviting 22 assisted dying practitioners to reflect on their experiences during the first 12 months of the Act's implementation. These weren't just clinical accounts, they were deeply personal stories that revealed the emotional, ethical, and logistical complexities of assisted dying.
Through thematic analysis, we identified three major themes: 'Knowing', reflecting on practitioners' prior personal and professional experience; 'doing', reflecting on their early assisted dying experiences of delivering this service; and 'being', reflecting on their personal/professional accounts of being an assisted dying provider. These themes helped us understand not just what practitioners did, but how they felt, what they struggled with, and what they learned.
What assisted dying practitioners said
Let's start with the positives because there were many. Practitioners consistently described the experience as a privilege. Despite the anxiety and emotional intensity, particularly during the first couple of service provision, they felt honoured to be part of something so meaningful. For many, the last words they heard from patients were 'Thank you'. That simple phrase carried immense weight. It affirmed that they were helping to end suffering, honour final wishes, help fulfil autonomy and choice, and offer peace.
But there were challenges too, some of which persist today. One major issue is the eligibility criteria, particularly the requirement that a person must be likely to die within six months. This can exclude people who are suffering profoundly but don't meet the strict timeline. Assisted dying practitioners sometimes found themselves in situations where they were challenged to give an exact or accurate prognosis because of the unpredictable nature of many medical conditions.
Another challenge is the regulatory prohibition on raising the topic of assisted dying with patients. Practitioners can't initiate the conversation; it must come from the patient. While this protects against coercion, it also means that many people don't even know the option exists. Some practitioners felt torn: they felt ethically challenged by withholding information about the full range of end-of-life care options, but they couldn't say so. Some others accepted the restriction, fearing that even a well-intentioned suggestion could be misinterpreted.
Assessing suffering was another complex area. There's no standard guideline or measurement tool, and suffering is deeply subjective, which could confuse patients in the evaluation process. Practitioners had to dig deeper, asking about daily activities, joy, and quality of life to understand the full picture. This subjectivity, however, allowed some room to acknowledge other forms of suffering, including psychological, existential, and spiritual suffering. For some practitioners, this subjectivity was seen as a positive point, allowing patients to determine whether and how they were suffering.
Experienced clinicians were often better equipped to do this and acknowledged that assisted dying involves a steep learning curve for junior practitioners.
And then there's the stigma. In smaller communities, some practitioners feared backlash from colleagues, neighbours, and even family. Many kept their involvement quiet, worried about judgment or misunderstanding. For some, this secrecy added another layer of emotional strain to an already demanding role and limited their ability to seek support.
Finally, we must acknowledge the logistical burden. Most assisted dying practitioners were, and still are, doing this work on top of their regular duties, after hours, on weekends, driven by compassion rather than compensation. Their dedication was extraordinary, but it may not be sustainable without better support.
What comes next
This study was just the beginning. It gave us a snapshot of the early days, a time of uncertainty, courage, and profound human connection. Since then, some challenges have been addressed, which is encouraging. But others remain, and we must keep listening, learning, and evolving.
Assisted dying is not just a legal or medical service; it's a deeply human one. If we want it to succeed, we need to support the people who make it possible. That means clearer guidelines, better training, more public awareness, and a culture that values openness over silence.
We are proud of this research and grateful to the practitioners who shared their stories and experiences. Their voices are essential. They remind us that behind every policy is a person and behind every person is a story worth telling.
