National Palliative Care Work Programme

We're working to ensure palliative and end-of-life care meets the needs of all New Zealanders and their whānau.

Overview - national palliative care work programme from July 2023

Health New Zealand | Te Whatu Ora holds responsibility for developing a palliative care work programme. The purpose of this programme is to support a nationally consistent approach to palliative and end-of-life care planning, funding, service delivery and outcomes.

This includes responding to the action in Te Pae Tata - Interim New Zealand Health Plan 2022 to develop a nationally consistent model for paediatric and adult palliative and end-of-life care that is integrated across primary and community health and strengthens the equitable provision of palliative care across Aotearoa (pg 63).

Health NZ is committed to working in partnership with Government agencies, providers of palliative care services (primary and specialist), consumers, and communities to ensure palliative and end-of-life care meets the needs of all New Zealanders and their whānau. Work will be informed by cross-agency and cross-sector input, national and international evidence, the lived experiences of people with palliative care needs and their whānau, and the priorities identified by communities.

Steering group

A national palliative care Steering Group was established in August 2023. This group of leaders will provide oversight and guidance for the national work programme over a 2 year period. The Steering Group will also establish and oversee the various short-term working groups required.

Working in partnership with whānau and communities, the initial focus of the Steering Group will be overseeing the following key deliverables:

providing recommendations on achieving equitable access to, and outcomes from, palliative care services for all New Zealanders
identifying and recommending core palliative care services that will be publicly funded
developing a national model for paediatric and adult palliative care
proposing national adult specialist palliative care service specifications and costings
providing recommendations to sustain a clinically and culturally competent, diverse workforce that represents the community it is serving and meets service demands
developing a national outcomes and reporting framework.

The Steering Group members appointed through an Expression of Interest process are:

Amanda Landers, Emily Chang (appointed July 2024), Emma Hedgecock, Fraser Watson, Georgina Johnson, Kim Fuller, Margaret Tuala, Maryellen Mitchell, Sara Simmons, Tess Huia Moeke-Maxwell, Vanessa Eldridge, Verbena Harawira, Warrick Jones, Wayne Naylor.

Further information about the Steering Group can be found in the Terms of Reference and member biographies below.

Position statement - National Palliative Care Steering Group

The Position statement - National Palliative Care Steering Group, September 2024 (PDF 303KB) includes information about palliative care health services, as well as key definitions and an overview of equity considerations, system pressures, and population projections. It also outlines the aims of the Work Programme which include ensuring we have an equitable and sustainable palliative care system that meets the current and future needs of patients, whānau-family carers, and communities.

Working groups

To achieve their deliverables, the Steering Group will establish and oversee 6 short-term working groups between September 2023 and June 2025. These working groups will each have a specific focus, and most will run for approximately 6 months. The proposed working groups are:

Equity (Feb 2024 – June 2025 approx.) see deliverable 1 above.
Models of care – paediatric (Dec 2023 –July 2024 approx.) see deliverables 2 and 3 above.
Models of care – adult (June 2024 – Dec 2024 approx.) see deliverables 2 and 3 above.
Contracting and funding (late 2024 – early 2025 approx.) see deliverable 4 above.
Workforce (mid 2025 – late 2025 approx.) see deliverable 5 above.
Measures and reporting (mid 2025 – late 2025 approx.) see deliverable 6 above.

Working group members will be appointed by the Steering Group following an Expression of Interest (EOI) process for each working group.

Further information about working group EOI processes and Terms of Reference will be added below as each of the groups are established.

 1. Models of care – paediatric working group

This working group was established in Dec 2023 in collaboration with the Paediatric Palliative Care Clinical Network, and concluded in July 2024. The purpose of this group was to:

review previous guidance and identify a national model for paediatric palliative care that is whānau centred and meets the needs of children, adolescents, young people, and their whānau in Aotearoa
provide recommendations on achieving equitable access to, and outcomes from, paediatric palliative care services for children, adolescents, young people, and their whānau in Aotearoa
recommend core paediatric palliative care services that will be publicly funded
propose a national model of paediatric palliative care for Aotearoa, including a funding model and implementation plan.

The working group members appointed through an Expression of Interest process were:

Amanda Evans, Amanda Lyver, Amy Hinder, Callum Gately, Cynthia Ward, Davina Collins, Emily Chang, Gemma Aburn, Jay Marlow, Jo Truscott, Kirimoana Pook, Michelle Wood, Nicole Coupe, Turid Heiler.

The final report from this working group is due to be submitted to the Steering Group and Equity Working Group in August 2024. Following this, we will make the report available here, and people will have the opportunity to provide their own feedback before this work is finalised.

2. Equity working group

This working group was established in Feb 2024 and will ensure that the national palliative care work programme keeps equity front and centre. They will identify unwarranted variation, inequitable access to, and outcomes from, palliative care services and provide recommendations on achieving equitable access for all New Zealanders and their whānau.

The working group members appointed through an Expression of Interest process are:

Amy Henry, Christina Bowen, Diane Perenara, Jackie Robinson, Jesse Davis, Jonathon Hagger, Lyneta Russell, Lea Galvin, Perminder Kaur, Richard Eagan, Sally-Anne Mason, Samuel Cho.

The voices of underserved communities in palliative care report (PDF, 3.8MB) Te Ārai Palliative Care and End of life Research Group

Excerpts from the Introduction of the report:
First and foremost, there are commonalities in terms of the strength, resilience and creativity of people from underserved communities. These skills are applied to end of life, as is evident in the stories you will read...
Also of note is that people across most of these communities die younger than the population as a whole and often in preventable ways. Palliative care need is complex, with many experiencing multiple physical and mental health conditions, as well as social circumstances which can amplify suffering. These deaths also often look different from the “typical death” seen in palliative care

3. Models of care – adult working group 

Update August 2024

This group was established in June 2024 to review how adult palliative care services and systems work together in Aotearoa. They will recommend core adult palliative care services and develop a national model and implementation plan for adult palliative care.

The working group members appointed through an Expression of Interest process are:
Anna Blackwell, Connie Watts Williams (resigned July 2024), Evelyn Gerrish, Hera Pierce (joined August 2024), Hinetewai, Kate Grundy, Louisa Ingham, Salina Iupati, Sue Tutty.

Other ways to participate in this mahi

Survey of palliative care services and change priorities.
Thank you to everyone who filled in our national survey during April and May 2024. We received over 1000 responses! Our initial report of the key themes is available here.
Webinar update. The Models of Care – Adult Working Group members presented an online webinar to discuss their progress and future actions. This event was held on 23rd October 2024. The recording will be available here shortly.

Feedback on the recommendations for change. Once the Models of Care – Adult Working Group has submitted their recommendations to the Steering Group, a public and targeted feedback process on the recommendations will follow. This process is likely to start in late 2024/early 2025 and will include online presentations, face-to-face meetings, and an online feedback form.
Updates on progress. For those wanting to keep up to date with this work, regular progress updates will be available here on our website and emailed to those on our stakeholder list.

Contact

If you would like to contact the Health New Zealand | Te Whatu Ora palliative care team or join our stakeholder list to receive email updates on our national palliative care work programme, email us.