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Te Ipu Aronui Road Map

There is no standard end of life pathway just like there is no standard whānau. Everyone’s circumstances, illnesses, and end of life care preferences are different and unique to them. In order to get to a destination, we often need a plan, a driver and a navigator. The end of life is a bit like that. The tikanga (customs) and kawa (ceremonial customs) that are followed in each iwi, hapū and whānau provide the tools to help us to navigate and manage things as they arise.

“The Te Ipu Aronui - Kete Aronui end of life road map provides an example of what the end of life pathway might look like”

The following roadmap illustrates that there is no linear (straight-line) to follow at the end of life. Whānau describe the end of life as somewhat unpredictable, therefore it is best to plan and prepare for the unexpected. Sometimes it can seem as though an unwell person is improving and then something happens and there’s a setback. End of life becomes a huarahi (road) that is lived in spirals inwards and outwards (like the breath) rather than a smooth even pathway that leads to the future.

Tāne’s journey to obtain Te Kete Aronui was important because it contained information about aroha (love, care, compassion), arts, crafts and rituals to benefit humankind and all living things. For example, this kete informs the tikanga (customs) and kawa (ceremonies) that support whānau as they care for an ill and dying kaumātua. It also supports how whānau experience and express their grief as whānau pani (bereaved families), and how they plan and carry out tangihanga (funeral customs), kawe mate (mourning ceremonies at subsequent tangihanga and events) and hura kōhatu (unveiling) ceremonies.

Signposts accompany each route, leading to pathways and processes that can be successfully negotiated on the end of life journey. However, things generally do not happen in a linear or straightforward manner. There are usually a lot of twists, turns and speed bumps on the way. Things may be going along quite smoothly and then something new and concerning happens, and everything has to be re-assessed. So, keep in mind the various obstacles and challenges that you may meet as you travel the pathway.

Each marker below has information about various stages of the end-of-life journey.

Kaumātua and whānau may wish to discuss a care plan and put this into place (they may wish to consider an Advance Care Plan and so speak with their GP or nurse).
Kaumātua and whānau may want to start initial planning for their tangihanga depending on the seriousness of the illness and the length of time the kaumātua has to live
- Important issues can be sorted such as where the kaumātua will lie in state (home, marae) and the urupā they will be buried in
- The option for cremation may be discussed; some iwi prefer burial over cremation… discussing this with the host marae will be important to avoid any confusion at a later point (some marae do not permit creation remains inside their wharenui (meeting house) or whare tūpuna (ancestral house)
Not all kaumātua and whānau want to know how long someone has to live
- If they do want to know they can ask the health provider but be aware that they may not know the answer to this question
  - Whānau can discuss who the best person is to carry this type of information; is it the kaumātua themselves, or perhaps someone else in the whānau (i.e. on behalf of the kaumātua?). Is there a specific person or perhaps the whole whānau who wants to know the answer? Is the person who the kaumātua has the closest relationship with the one that should be told, or should the person (or people) who are likely to provide the kaumātua with the most support at the end of their life be informed? These things take time to decide.
  - Some health conditions can also lead to significant symptoms or events nearing death, or at time of death. Whānau need to be aware of this as it can be distressing if families are unprepared. Whānau can ask health professionals if there is anything, they need to be aware of.
Some whānau may want to know what the actual death will look like
- Many kaumātua need more and more sleep as they get closer to the ārai (veil) and death happens peacefully and naturally.
- Some illnesses have specific things that can happen when a person dies (whānau may want to be prepared and can ask a health professional about this).

Kaumātua and their whānau manaaki can have many hui (gatherings) to discuss the diagnosis and develop a care plan
- What do they need right now? What about later when their health declines?
- What needs to change?
- Who will support the older person with their immediate health needs?
- Who will become their spokesperson when they are no longer able to speak for themselves?
- Can they continue to live on their own? What living arrangements will be appropriate for them in the future?
- What do they need right now? What about later, if they get sick?
- Who in the whānau manaaki network can support them with personal cares, and help the kaumātua to run their home, business as well as support the kaumātua with their succession planning [cultural knowledge, passing on land and artefacts?]
- Do they need financial support and who can help them?
- Who will make end of life preparations [tangihanga?]. Who will support kaumātua to carry out their wishes? Do they have any funeral insurance cover, or have they pre-paid their funeral? Where are their documents kept (it is helpful to know where birth certificates, wedding certificates, divorce papers, change of name certificates, passport and insurance policies are kept).
- Is there another kaumātua that may need care and support at this time (i.e. the kaumātua’s spouse)? Whānau manaaki may need to put care in place for two older people, not one.
- Does the kaumātua want to give their information to a trusted whānau member or complete an Advance Care Plan? Do they wish to see a lawyer to appoint an Enduring Power of Attorney for their Medical and Financial decision-making when they are no longer able to?

It is normal for someone to want to karanga, say karakia, wail, cry, sob, become silent or physically get upset when someone dies
- Karanga, karakia, waiata, mihimihi (speeches) help to soothe the minds and hearts of whānau pani (bereaved families), as does touching or hugging the deceased kaumātua and each other
Following death, a doctor carries out an assessment of the older person to ensure their heart has stopped beating. However, if the older person has been seen by a medical doctor prior to death they may not need to be re-examined
A Death Certificate will be issued by the doctor
- If the death happens in a hospital, hospice or residential care facility the organisation may allow the kaumātua’s body, and their whānau, to stay for an extended period before the Funeral Director comes to collect them (if the death happens late at night the whānau may be able to stay until the following morning with the tūpāpaku (body) – this is up to the organisation as each one has their own policy. The tūpāpaku can also be released directly to their whānau however, policies may apply so best to check it out first
- Whānau have the choice to keep their kaumātua at home with them or to contact someone else to care for, and prepare, the tūpāpaku for viewing
Many whānau will select a local funeral service and call them
- The funeral director will collect the kaumātua’s tūpāpaku and will prepare it for viewing
- Arrangements will be made according to the kaumātua and their family’s wishes:
  - Did the kaumātua want to be embalmed (this takes time and whānau are not permitted to be present during this process?)
  - Will whānau dress the tūpāpaku after the funeral director has completed the preparations?
  - Does the whānau wish to view the kaumātua at the funeral home or will the tūpāpaku be taken to a specific marae or a whānau home? Are others allowed to visit the kaumātua at the funeral home?
  - What are the policies during a pandemic?

Kuia K. commented on the process of grieving and the role of whānau in easing the pouritanga (sadness, depression, gloom) throughout the life-death-grieving cycle of life:

[W]hen a loved one is dying, it starts right from the beginning and I’m talking about the process of grief, anxiety, unwellness and then healing. And I mean there’s a lot of things in-between but… for myself the big feature… is the grief… you go through that grief when you hear that sick person say, ‘I’ve got cancer and I’m dying’. That’s when you start grief/grieving, and it goes right through that whole period. How long it takes, 12 months, 2 years, that grief and that anxiety is there with the whānau, with that woman, that sick person and with the whānau, the whole time. But the amazing thing is how it’s dealt with. You know you can feel grief, you can feel anxiety, but you just have the ability to cope. Because you have a caring whānau around you and this is the other thing, whānau arohanui [deep affection], manaakitanga [kindness], tiakitanga [guardianship, protection], kotahitanga [togetherness, solidarity, collective action], wairuatanga [Māori spirituality], karakia [prayers, incantations, chants], all those things. Together, those ‘tanga[s]’ [suffix to help make verbs into nouns] helps to carry, not only the one person [but] the whole whānau through that whole process from grief right through…

And it doesn’t stop at the dying either (at the death) - it continues right through because, after that… it’s what you do, how you awhi [embrace, cherish] the whānau pani [chief mourners]. That’s a really important part of how you awhi the whānau pani at the end you know, it doesn’t finish at the burial, it carries on. Then what do you do with the whānau pani? [Do] you just leave them up high and dry - you can go home, it’s all over? Not like that- the whānau, the extended whānau takes that whānau pani home. That extended whānau take that whānau back to where they were. So, everything goes back to normal. So… that whole awhi process just goes right through. I think it’s beautiful…

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