As the country’s global palliative care ranking plummets, a new professional movement has emerged to fill critical gaps in end of life support.
Margaret’s room was filled with her favourite music, candle lit, her chosen whānau (family) and beloved dog present, and the window open wide to let her spirit soar, just as the 65-year-old had planned months earlier.
Despite the raw grief, there was peace.
She and her family had time to say everything that mattered because they weren’t scrambling under pressure to make decisions about care, funeral arrangements, or after-death wishes. Everything was prepared according to her values and desires.
This approach, from crisis-driven dying to supported death, illustrates both the potential of End of Life Doula care and the need that has driven New Zealand Doulas to establish the End of Life Doula Alliance Aotearoa (NZ). Also known as ELDAA.
ELDAA sets the professional standards for End of Life Doula practice and supports and advocates for their Doulas. ELDAA is also the central point of contact for those seeking End of Life Doula support in NZ.
The launch in 2024 comes as the country faces mounting challenges in palliative care.
According to Te Whatu Ora/Health NZ, deaths will rise from around 36,000 in 2023 to 63,000 in 2053, with two-thirds of New Zealanders expected to need palliative care.
That’s an almost doubling of demand within 30 years, while services already struggle to keep pace.
Chronic underfunding has forced hospices to cut services and our international palliative care ranking has dropped from 3rd in 2015, to 12th in 2023.
End of Life Doulas walk alongside those advancing in age, or living with incurable illness (and their families), providing non-medical holistic care. Helping to navigate the health system, sharing knowledge so that people can be empowered to make informed decisions, addressing emotional, spiritual and cultural needs, and supporting autonomy and control over the person’s life, death and what happens afterwards.
Research by Profession Allan Kellehear, the founder of public health palliative care and Patron of ELDAA, highlights the “95/5% Rule”, that a person with life-limiting illness spends approximately 95% of their final year outside direct contact with healthcare services; leaving the other 95% reliant on family, friends, neighbours, the cat, and the TV.
With an already stretched healthcare system, Doulas work alongside Hospices, GP’s, Hospitals and other healthcare providers, to anticipate the needs of the person, help increase communication, and be the one who is alongside the person from go to woah and beyond, advocating for and ensuring that the health providers know what’s important to that person.
And while Hospice and Doula roles sometimes cross over, the sheer weight of demand often precludes our health professionals from providing timely, all round holistic care of the dying.
Evidence and Integration
International evidence suggests that doula support can ease strain on health systems. For example, a UK study showed that only 13.4% of people supported by doulas had unplanned hospital admissions in their final 90 days, compared with 34–50% without such support.
ELDAA plans to conduct similar research in New Zealand to build the evidence base for systemic integration.
“Our long term vision is integration, with doula care funded, and to be recognised as partners in end of life care,” says Treza Gallogly, Chair of ELDAA. “We envisage referral pathways from health professionals to be standard practice, so families can access our support as a matter of course.”
Looking Forward
Our recent Dying Matters Week saw over 250 events across the country, hosted by Doulas, Celebrants, Hospices and others in the deathcare space.
There is a growing thirst for more information and Doulas are educating our communities to be confident in caring for their loved ones at the end of life, and be cognisant of their own mortality.
As New Zealand grapples with an ageing population and stretched palliative care resources, ELDAA offers a professionally supported, community based response that honours cultural diversity and human dignity.
“As EOLD’s we are responsive. We fill the gaps. We come with compassion and neutrality and we find out the best way to support people in accordance with who they are and what they wish. We honour the deeply human experience of dying. It’s about ensuring that every New Zealander has the chance to die with dignity, in the way that feels right for them and their whānau (family).”
Authors : Treza Gallogly and Sarah Campbell-Simpson, ELDAA. Both are trained End of Life Doulas and Committee members of the End of Life Doula Alliance Aotearoa (NZ).
Treza Gallogly, Chair, End of Life Doula Alliance Aotearoa (NZ)
chair@eldaa.org.nz +64 21 957255.
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