Whānau who provide end of life care

Whānau manaaki is a term that can be used to describe families who provide care to a kaumātua at end of life. The term ‘whānau’ means family and is inclusive of extended family; it can include multiple generations with widespread biological connections and extended family and friends. ‘Manaaki’ is about caring for the mana of people and things. Manaakitanga is the process of actively caring for people, providing hospitality, and showing kindness and generosity.

Māori Kaumātua

Kaumātua are respected elders; they are valued members of iwi, hapū and whānau. Some iwi refer to both older males and females as kaumātua while other iwi refer to kaumātua as being only males; kuia is the term widely used for an older woman. Meanings associated with the term kaumātua vary depending on a range of factors including biological age, cultural knowledge and participation in Māori society. There are different age bands that iwi and whānau associate with kaumātua. For some whānau, a kaumātua might be as young as 50 while for others it is those aged 70 and over. On the Te Ipu Aronui website and in our work, we have used the term ‘kaumātua’ to include both men and women over 50.

Caring for the mana of kaumātua and whānau

Mana is the status or prestige that an individual or a whānau has. Within their own communities kaumātua may be recognised as rangatira (leaders) and bestowed with great mana. Everyone has mana. Māori believe:

a) People are born with mana (inherited from the merits and mana of the ancestors)

b) Mana is gained through an individual’s (whānau, iwi, hapū’s) aspirations and achievements across the life course

c) Others can attribute or give mana to another person (whānau, iwi, hapū).

Rangatiratanga

Even kaumātua who are recognised for their great leadership and mana may need help at the end of life. Despite being well loved by their whānau and communities, some kaumātua need the support of health professionals when they become ill. However, they may choose to try to protect their whānau from being burdened with this end of life responsibility. Some kaumātua may openly refuse their family’s offer of support, or they may valiantly try to hold on to their independence, as a way of loving and protecting their family. In truth, whānau tell us that caring for their ill and dying kaumātua is an honour and a privilege. It is good to be aware of these related, and yet different perspectives among whānau.

Mary Te Awhi (hospice kaitakawaenga) reflected that not all kaumātua are prepared for the end of life. Having someone to talk to about how they’re feeling about dying can be beneficial:

I knew that she was the kuia and her whānau were from [name], but I didn’t know the depths of it. And I knew that name because… we’ve looked after them over the years. And I just learned a bit more about [her]. I knew that she was passionate about her marae and about her community and she had been a hardworking woman all her life. Raised her four children and some of her mokopuna and did a lot of volunteer work for the marae in terms of tangi and wananga and various other things.

We were sitting one day and she’s in her 80s, and she said to me, ‘I never ever thought about dying.’ And I went, ‘Nan, really?’ And she said, ‘Well, dying is there. We know that’s part of life, but I never ever thought about me dying. My dad died young, my… some of my sisters have died, you know, my whānau, but I never thought about me dying.’ And I just kind of thought that that was just, totally unique. For a woman, I think Nan is like 83, 84… I think she was more shocked that she was having to think about [that]. Here was this independent woman that did her own gardening, mowed her lawns, worked full time and worked hard all her life, helped out at her marae, and helped out with her whānau; she counselled, she supported, she did all sorts of things, and all of a sudden, she now needs the help. Yes, that’s the struggle of the adjustment. Not so much that she’s got some mamae, but that it’s restricting her from being who she is.

Whaea Marilyn, a rongoā practitioner, spoke about the importance of treating the person as a person and not as a patient:

To be treated like a person, not like a patient, to be treated like my koro, to be treated like my nani, to be treated like my mother in-law, but not as a patient… Because I think that can be so debilitating … I’m sorry, but that’s what the hospitals do. And I love them up here at the hospice, I really do. But some of them will still treat them [whānau/kaumātua] as a patient. Not all of them, but just some of them.

Recommendations

For health and palliative care professionals, we recommend:

  • Health professionals recognise and value the status of kaumātua and ensure that their mana and dignity is upheld by respecting the older person’s rangatiratanga (self-determination, authority), and their valued place within society.

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