Palliative Care

Manaakitanga and Kaitiakitanga at the End of Life

Because of the changes brought by colonisation and the ways many of us live today, not all whānau have had the opportunity to learn traditional caregiving practices or access mātauranga Māori to guide end-of-life care. Some may feel unsure about what to do, where to start, or how to uphold tikanga in these moments.

If you are looking for practical guidance from a whānau perspective on caring for Māori adults and kaumātua at the end of life, you may find support at Te Ipu Aronui (www.teipuaronui.co.nz). It offers whakaaro (ideas) and resources grounded in Māori values and experiences. You can also learn a lot about Māori death tikanga from reading Rapua te Mārama – whānau stories about end of life care and dying during the COVID-19 lockdowns or viewing the virtual reality interactive online resource.

Whānau are at the heart of caring for someone who is seriously ill or dying. They awhi and manaaki their loved one — embracing them, protecting them, supporting them, and walking alongside them through this final stage of life.

Each whānau has its own ways of caring. Often, people naturally step into roles that reflect their strengths, relationships, and mana within the whānau — whether as tuākana, teina, or in other important positions. Some become the steady companions who provide 24/7 care at home or within a health setting. Others coordinate support, communicate with services, or ensure cultural practices are upheld.

Every person brings their own unique gifts. When whānau come together in kotahitanga — sharing information, planning, talking things through, and preparing for what lies ahead — they strengthen the oranga of their loved one. Care includes looking after the tinana (physical body), hinengaro (emotional and mental wellbeing), and wairua (spiritual wellbeing).

A person who is seriously ill may choose someone they trust to speak on their behalf. This person is their māngai (spokesperson), or it may be said that they “wear someone’s pōtae” when engaging with health professionals, health services, or the Assisted Dying Service. This role carries responsibility and aroha — ensuring the person’s wishes are clearly understood and respected. However, the person who has an incurable terminal illness must make the decision to have an assisted death on their own terms and verbally express this to an assisted dying attending medical practitioner. Whānau can support them in various ways such as finding assisted dying information and attending the assisted dying assessments. Whānau can support the person’ as they arrange their end of life affairs and they can help to organise their dying day and tangihanga.

Whānau are an important part of the wider palliative care team. They are also often central when a loved one is thinking about assisted dying. Listening with compassion, holding space for honest conversations, and helping to gather information are all ways whānau offer support.

Whānau may help their loved one make enquiries or understand the assisted dying process. However, the law is clear: the decision to have an assisted death must be made by the person with the terminal illness themselves, without pressure or coercion from anyone else — including whānau, friends, or health professionals.

At the end of life, whānau are often deeply involved in daily care. They may manage nutrition, organise and administer medications, oversee finances or living arrangements, and call upon kaumātua or cultural leaders to uphold tikanga such as karanga, karakia, waiata, whaikōrero, and the arrangements for tangihanga.

Trusted whānau members are often asked to walk closely beside their whanaunga as they explore and make decisions — including decisions about assisted dying. These supporters may have a special bond with the person, or particular strengths that help them navigate the Kaitiakitanga Assisted Dying Pathway.

People need whānau beside them during assisted dying assessments, in planning for the day itself, and in preparing for tangihanga. Above all, they need aroha, respect, and the reassurance that they are not alone.

In all of this, manaakitanga and kaitiakitanga guide the way — caring deeply for our people, protecting their dignity, and upholding their wishes with love and integrity.

Palliative care is the care and support offered to someone who has a serious, life-limiting illness. When doctors determine there is no cure for the illness, the focus gently shifts from trying to cure the disease to caring for the person.

The aim is comfort, dignity, and quality of life — managing pain and other symptoms, while supporting the person and their whānau emotionally, spiritually, and practically. Palliative care is available to people of all ages and can begin at any stage of a serious illness. It is not only for the final days of life.

The World Health Organization (WHO) describes palliative care as an approach that improves the quality of life for people and their families facing life-threatening illness. It focuses on preventing and relieving suffering through early assessment and treatment of pain and other physical, emotional, social, and spiritual concerns.

For Māori, this holistic approach aligns closely with caring for the whole person — their tinana (body), hinengaro (mind and emotions), wairua (spirit), and their connections to whānau.

Palliative care also recognises that whānau are at the center. It offers:

  • Clear information so whānau understand what is happening
  • Emotional and grief support
  • Practical help, such as equipment (hospital beds, wheelchairs, commodes)
  • Guidance to help whānau care for their loved one at home if they wish

Care is usually provided by a team that may include doctors, nurses, social workers, cultural support workers, and other health professionals — all working alongside whānau.

For many people, dying is a gradual process. They may begin sleeping more, eating and drinking less, and becoming weaker. Breathing may become slower and less frequent. This is often described as a “natural death,” where the body gently slows down.

Some people are cared for by their GP and community nurses and are able to remain at home surrounded by their whānau. Others may be in aged residential care. Some people with more complex health needs may require specialist hospital or palliative care support to help manage pain and symptoms.

Access to services can vary, especially in rural or remote areas. Not all services operate 24 hours a day, and some may not be well equipped for pēpi, tamariki, or people with very complex conditions.

In Aotearoa New Zealand, hospice services provide specialist palliative care for people with life-limiting illnesses and their whānau.

Hospice New Zealand represents more than 30 hospices across the country and works to ensure quality and equitable access to palliative care.

Many people think hospice is simply a place people go to die. This is not the case. Hospice care focuses on helping people live as well as possible for as long as possible.

What Hospice Provides

Hospice care includes:

  • Specialist symptom and pain management
  • Holistic support — physical, emotional, social, and spiritual
  • Whānau support and bereavement care
  • Home-based care — most hospice support happens in the person’s own home
  • Inpatient care (where available) — some hospices have beds for short-term specialist care or respite
  • Free services — hospice care is free for patients and whānau
  • Community-supported services — funded through a mix of government funding and community fundraising

 

For many Māori whānau, home-based hospice care works well, as it allows loved ones to remain in familiar surroundings, supported by whānau and guided by tikanga

Palliative and hospice care are about walking alongside a person and their whānau with compassion, respect, and dignity — ensuring no one faces serious illness or the end of life alone.

Hospice

Selwyn Screen & Tau Huirama

Hospice from a Clinical Nurse Specialist in Māori Health

Kim Stephan

Hospice from a Kai Whakahaere

Linda Olsen

Hospice from a Kai Whakahaere

Pania Dewes

Caring for wairua at end of life

Tau Huirama

Palliative Care

Katrina Kirikino-Cox and Cathy Livermore

Rongoā

Cathy Livermore