He aha te tikanga o te ‘Mutunga o te Ora’: What do we mean by ‘End of Life’?
Te Wā Whakamutunga: Part 2
Our research into end-of-life experiences in Aotearoa New Zealand began with many questions. Yet, one has emerged with striking clarity:
When does the end of life begin, and what does it truly mean?
In Aotearoa New Zealand, health and policy systems often define ‘end of life’ through a clinical lens, typically referring to the final year, narrowing further to the last months, weeks, or days when a person is considered to be actively dying. This framing is echoed in national tools like Te Ara Whakapiri, which provide guidance for care in the last days of life, often when death is imminent. While some services may extend support earlier, around the year to six-month mark, in practice, many people receive end-of-life care too late, sometimes just days before death. One major study found the median time from referral to death across services was only 19 days.
This narrow, time-bound definition shapes who gets support and when, often relying on a clinician’s ability to estimate life expectancy. It risks shrinking the time, space, and scope of care to fit prognosis, rather than responding to the person’s actual needs.
Globally, there is no universally agreed clinical definition of end of life, but broader, more human-centred understandings are emerging. The World Health Organization (WHO), for example, does not sharply distinguish between palliative and end-of-life care. Instead, it views end-of-life as the final phase in a continuum that begins when someone is diagnosed with a serious or life-limiting condition. In this model, end of life is not a precise moment, but a progressive period when physical, emotional, and spiritual needs begin to grow.
This difference is more than semantic; it is relational. In Aotearoa New Zealand, being told you don’t yet qualify for end-of-life services can feel like being told your needs don’t yet count. In contrast, the WHO-aligned model recognises end-of-life as a longer, unfolding journey; one that begins not with a deadline, but with a shift in reality for the person and their whānau.
This broader framing acknowledges that suffering often begins long before death is imminent. It creates space for grieving and preparation, not only clinically, but also spiritually, relationally, and culturally. It invites care to begin earlier, guided by need rather than prognosis.
It opens the door for care to begin earlier, guided by need rather than prognosis. Without that early support, the slow decline can remain unseen, and the evolving patterns of pain, adjustment, and vulnerability risk being overlooked or misunderstood.
The Māori worldview reminds us that time is not linear and that death is not simply an endpoint. Te Ao Māori offers ways of understanding life and death as deeply relational and spiritual, interwoven with whakapapa, whenua, and wairua. In this view, the end of life is not something to be rushed or rationed. It is wā tapu, sacred time, deserving of presence, preparation, and collective holding.
A generous definition of end-of-life asks us to widen the circle of care. To offer time, comfort and community, not only at the final breath, but in all the moments leading up to it. In those moments, for example, when a patient is surrounded in bed by friends, wine, cheese, and laughter or when the bedroom doors are thrown open, letting in the hush of the sea and the soft call of tūī, life carries on just beyond but is still present. It's quiet for sure, but rich with presence and connection.
We began our research speaking to those with end-of-life experiences. We spoke to formal providers such as local GPs, hospice care workers, nurse practitioners and care providers. We also interviewed the formal networks surrounding a loved one, namely family members.
When interviewing whānau, we invited them to reflect on their loved one's time of endings and asked a simple question: "When do you believe the end-of-life journey began?"
Their responses were striking. Few spoke of the final days or weeks. Instead, most described a much longer, slower unfolding, often beginning months, and sometimes more than a year, before death. There was rarely a single defining moment. Rather, they recalled a gradual shift: an unexplained symptom, subtle changes in behaviour, increasing uncertainty, and the quiet erosion of everyday routines as health declined. One participant, reflecting on her husband's experience, captured this poignantly:
“One day we were driving to the beach, it was November, and for the first time ever, he let me drive. He never drove again after that. Later, I thought back to the times he drove himself to hospital appointments while I was away. He’d never damaged a car in his life, but when I returned, I noticed dents in ours. Where did they come from? I think his judgement just wasn’t the same by then.”
Some described a particular medical event, a stroke, a new medical regime, a new scan result, as a turning point. But for many, the end of life didn’t start with a prognosis; it started with the quiet, often unspoken recognition that life was changing, and not in a way that would be reversed.
Family members spoke of slow losses: energy, appetite, independence. They told us how relationships changed. They described how hopes recalibrated to comfort, from future planning to making day-by-day living safe and comfortable.
What emerged was not a clear line marking when end-of-life "begins", but a blurred, deeply human threshold, marked by physical decline, emotional recalibration, and social realignment. This is the time, when the dying person is unwell but still holding on, that support is often needed most, and yet most often absent.
As we continue to listen to experiences, it is becoming clear that defining the end-of-life too narrowly, only in its final days or weeks, fails to recognise these early and meaningful shifts. If our systems wait until death is imminent before providing care, they are missing the very space where people begin to confront their mortality, adjust to new realities, connect and make peace with any time they have left.
These stories challenge us to expand our definitions, not just to change the eligibility criteria, but to change how we see the end of life altogether: not as a sharp decline at the end of a timeline, but as a profound and layered stage of life in its own right.