This week (September 1 – 7) is Dying Matters Week Aotearoa. It’s a week to connect people across the motu, to start conversations in a safe space, learn from local experts and seek support to get affairs in order and navigate grief or loss. To commemorate the week, Death Doula and Vice-chair of the End of Life Doula Alliance Aotearoa, Sarah Campbell-Simpson has penned this eye-opening piece about the worsening state of our palliative care services in New Zealand, and why she believes end of life doulas (also known as death doulas) should be integrated into Aotearoa’s palliative care frameworks (including pathways for funding through health services) due to the truly positive impact they can have on the dying – and their whanau.
OPINION PIECE
Life is never more profound than when we are dying.
Picture this: Your mother is nearing the end of her life. She’s expressed a desire to die at home, surrounded by family, with her favourite music playing softly in the background. She knows death is near, but she feels held by what she wanted, her hopes and wishes honoured in her final days, hours, moments. Although raw sadness fills the room, there is also peace, and a sacred honouring of her life and your family’s love.
But the reality is often starkly different. She’s in a busy hospital ward, the medical team stretched thin, and your family feels adrift, navigating the overwhelming feelings and difficult and pressurised decisions that dying can bring. They don’t understand what’s happening. Shock and fear fill the spaces where preparation and agency should have been. This isn’t just about the institutional setting, it’s about families feeling unprepared, unable to create the meaningful farewell that death deserves.
This scenario plays out daily across Aotearoa, and it doesn’t have to.
The reality
By 2061, two in three New Zealanders will die needing palliative care—nearly double today’s demand and half of us are dying in hospital despite most preferring home. New Zealand dropped from 3rd to 12th globally for palliative care in just 10 years and our Hospices are cutting services due to chronic underfunding. Even then access is a “postcode lottery.” It’s clear, current service levels are already unsustainable.
Even when palliative care is available, it’s not uncommon to find that individuals and families find themselves overwhelmed by medical language, systems and decisions, with little time to process what is happening. At home, families often lack the plans and resources to navigate the next stages. Dying becomes a medical event rather than the deeply human experience it truly is.
This huge space is where End of Life Doulas can help. We offer non-judgmental, non-medical, holistic care to people of all ages and at all stages of life, including those advancing in age or living with chronic or life-limiting illness, and those supporting them. Just as midwives guide us into the world, doulas guide us out, with as much presence, compassion, and respect that we can bring.
We embrace choice, diversity and inclusion because we understand that there is no single way to die well. Our work honours the full spectrum of human experience—different cultures, beliefs, family structures, and personal values. Working with empathy, respect and dignity is our vision; it’s how we show up.
End of Life Doulas don’t replace doctors, nurses, or hospice teams; we complement them by providing what the system often cannot: unhurried time, calm continuity, and the confidence that families are not alone. Our goal is to work collaboratively with multidisciplinary teams, always in accordance with each person’s goals, values and preferences. We work in the 95% of the journey that happens outside hospitals and hospices, at home, in community, in the everyday life of dying.
The numbers tell the story
The impact is both human and measurable. International research, including the NHS Leeds pilot, found that with doula support only 13.4% of people had unplanned hospital admissions in their final 90 days, compared with 34–50% without doula support. An impressive 85.2% died in their preferred place—most often at home. Families felt calmer, better prepared, and more empowered to care for their loved ones.
Here in Aotearoa, End of Life Doulas are already making this difference. Through the End of Life Doula Alliance Aotearoa (ELDAA), over 100 members, including 25 certified professionals who have completed comprehensive training programs, are working across the motu. Together we are building a compassionate, community-centred model of care that supports families, strengthens palliative care, and restores confidence in communities’ ability to care for their own.
Equity and Access Matter
But beyond the numbers lies something more fundamental: equity and dignity. Too often, access to good end-of-life care depends on postcode, income, or education. Rural communities, Māori and Pasifika whānau, and families in lower socioeconomic areas can face barriers to accessing quality palliative care.
Dying well should not be a luxury; it is a human right. It means knowing when death is coming and understanding what to expect, being able to plan and make choices about care, maintaining dignity and privacy, and having pain managed effectively. It means controlling where death occurs, accessing spiritual and emotional support, having trusted people present at the end, and being able to say goodbye on one’s own terms.
Death is not going away. With New Zealand’s aging population, demand for palliative care will only increase. The question is whether we try to keep up with this challenge with crisis management, or be ahead of the tsunami with foresight, compassion, and courage.
Our vision is twofold: For ELDAA to be recognised as the trusted professional entity for trained, compassionate end of life Doulas in NZ, and to have doulas integrated into Aotearoa’s palliative care frameworks, with pathways for funding through health services, expanded reach into underserved regions, and recognition within healthcare policy. We are building the evidence base that demonstrates both the emotional and economic benefits of doula care—reducing hospital admissions, supporting family caregivers, and enabling more people to die where they choose. This approach recognises that death is not just a medical event, but a deeply personal, family and community experience.
Our role is not to add pressure to the health system but to relieve it, offering scalable, community- based care that is relational, human, and effective. We have the workforce, the training, and the passion. What we need now is conversations, recognition and integration pathways that acknowledge there is a gap that needs to filling so we can support death and dying with humanity and care.
As Ram Dass once said, we are all just walking each other home. Our role is simply to make that final walk as supported, comforting, and meaningful as possible, honouring the whole person and working alongside families and healthcare teams to ensure that every person’s journey is met with the dignity, respect and compassion they deserve.
He aha te mea nui o te ao?
He tangata, he tangata, he tangata.
What is the most important thing in the world? It is people, it is people, it is people.
 is Dying Matters Week Aotearoa. Our palliative care services are worsening - could death doulas improve...){kind=link}