Whānau Stories

In the Māori creation story, Tāne’s quest was to ascend the heavenly realms to retrieve three baskets of knowledge to help humankind. The third kete (basket) he retrieved was ‘Kete Aronui.’ This kete contained all manner of practical knowledge to help humans live well and prosper on earth. Kete Aronui kete contains helpful tikanga and kawa that are woven together by whanonga pono (values). Each whānau ‘kete’ contains specific values that guide and support the family to provide care to someone who is ill and dying; each kete includes their expressions of love, emotional, physical, practical, financial and spiritual support.

This page is dedicated to highlighting some information about whanonga pono (values) to support whānau to provide care to an adult or kaumātua at the end of their life. The information is based on the Pae Herenga study findings. Kaumātua advisors from the Te Ārai Palliative Care and End of Life Research Group, School of Nursing, University of Auckland support our recommendations.

Ten Whanonga Pono (values)

Many whanonga pono and principles underpin tikanga and influence how whānau care for their kaumātua. We found 10 whanonga pono that emerged when we analysed pūrākau from whānau who took part in an interview in the Pae Herenga study; these values form the threads of Kete Aronui. Collectively these values show the importance and mana (authority, status) of whānau in the end of life caregiving system. We briefly describe these values below - they are not listed in any order or importance as each value has its own merits and is interconnected and reliant on the others. These 10 whanonga pono are supported by pūrākau videos (stories) provided by Pae Herenga study participants and pilot study participants.

End of life is a time where whānau provide care filled with love, empathy compassion, understanding and patience. This produces a powerful healing energy vibration that fortifies whānau to care for their kaumātua. Some great examples of aroha are demonstrated in Cess and Fin’s pūrākau (stories) (Pae Herenga study participants’), and also Kiripai’s story (Pilot study participant).

End of life care activities are relational. Caregiving takes place within a whānau care system; caring involves every member of the whānau. Everyone has something they can contribute. Caring means sharing! Good connections and strong relationships help to spread the end of life care privilege and responsibility. Each whānau member has a role, or multiple roles to play in caring for a kaumātua. Even children have a role to play as their presence can help to uplift the spirit of a kaumātua. Some lovely examples of these connections are shown in Marilyn and Kim’s stories (Pae Herenga study participants), and Red’s pūrākau (Pilot study participant).

End of life is a time when kaumātua are preparing themselves to cross the ārai (veil). They will return to their spiritual origins to be embraced by Io Matua Kore (Supreme Creator) and will be reconnected with their ancestors. Kaumātua are valued and respected in relation to their whakapapa (genealogical connections), tūpuna connections and ancestral histories. Everyone has a whakapapa, and everyone comes with his or her own personal life story, which is also a type of whakapapa. Not all life stories are easy and not everyone has a large whānau to care for them at end of life, but most kaumātua will have someone in their whānau to help them. Health professionals can provide valuable support. See a good example of this in Vanessa’s story (Pae Herenga study participant).

Whānau respect the relationships kaumātua have with their whenua (lands), ancestral homes and those places where they feel most emotionally and spiritually connected. Good end of life care honours these connections with important ancestral spaces and places. Sometimes, before they die, kaumātua need to visit their ancestral homes and be with the people who live there, as well as their maunga (mountains), ngāhere (forests), awa (rivers), moana (oceans), marae (gathering places), urupā (gravesites) and whenua (lands) as this helps to calm and fortify them for what lies ahead. Knowing they have planned where their tangihanga (funeral customs) will take place and what urupā (gravesite) they will be buried in, can lift a huge weight of their shoulders. This lifts some of the organisational responsibility off whānau. An important example of this in Abigail and Ivy-Lee’s story (Pae Herenga study participants), and Eliza’s story (Pilot study participant).

End of life care requires many conversations among whānau who plan and prepare for days, weeks, months and sometimes years ahead (as with dementia care, for example). The goal is to reach an agreement on what is needed and what will produce the best outcomes for kaumātua and their whānau. Sometimes one family member takes leadership and helps to organise their whānau. This can be particularly helpful when the person has knowledge of the health care system and a high level of health literacy (being able to obtain, understand and apply important health information); they bring this together with their tikanga (customs) to inform their planning and care preparations. A great example of this can be viewed in Manaaki’s story (Pilot study participant).

Care needs will change as life unfolds and the older person’s health declines. Discussions and decision making often involve living arrangements, caregiving at home, hospital, hospice or Aged Residential Care involvement, personal cares, pain and symptom management, medical treatments, care of other dependents (such as arranging care for any mokopuna the kaumātua may be raising), tangihanga arrangements and legal matters. Consensus is reached when everyone is satisfied with the decisions made. Conversations take place between the kaumātua and their whānau, and discussions can include health providers who can also become part of the broader whānau end of life care system. See an example of good communication in Anita’s story (Pae Herenga study participant).

When you are part of a whānau, there is a collective responsibility to support kaumātua when they need it. It is common for kaumātua to give someone in their whānau speaking rights to speak on their behalf when they are no longer able to speak for themselves. This advocacy position can be very helpful as the kaitiaki (person who provides the leadership/spokesperson support) can carry out the wishes (including cultural obligations) of the kaumātua. The kaitiaki has a useful role in being able to hapahapai (advocate, champion, promote) on behalf of their kaumātua, by speaking up to health professionals. Some whānau may have more than one spokesperson and they may have spokespeople for different things (medical, cultural, legal). Sometimes these roles might be formalised legally, for example, an Enduring Power of Attorney assumes legal protection of the kaumātua. A strong example of kaitiakitanga (leadership) is highlighted in Tiana’s story (Pae Herenga study participant).

End of life is the time whānau give back to kaumātua. There is a recognition that kaumātua have cared for their whānau throughout their lives and now they need this aroha and support returned. It is an opportunity for the whānau to care for them. The older person’s community has a role to play in supporting this based on the status the kaumātua has as a rangatira (respected leader) and elder within their community. See some good examples of manaakitanga in Jonine’s and Stella’s stories (Pilot study participants).

End of life care means that whānau have a role in protecting the self-determination and self-management of kaumātua. Whānau will try to ensure the older person’s independence to live and die how they want is respected and protected until they take their last breath. Kaumātua are often very independent and can resent people taking away their ability to do things for themselves. Some kaumātua may feel the need to protect their whānau from taking on a caregiving role, as they know their whānau are busy, financially under pressure and perhaps they may live some distance from them. Whānau can find ways to discuss these issues so they can support and help their kaumātua while still protecting their end of life care preferences. See an example of this in Devi-Ann’s story (Pilot study participant) where her brother George used his autonomy to organise his own tangihanga.

End of life care means that whānau have the privilege and obligation to uphold the status, authority and prestige of their kaumātua by caring for them 24 hours a day, particularly when they are close to dying. This includes protecting kaumātua from any form of harm during this phase of their lives as this is a time when they could be feeling physically, financially, socially, emotionally and spiritually vulnerable. Whānau try to protect their kaumātua by ensuring that they are not put in compromising situations physically, emotionally or spiritually. They focus on uplifting the mana of kaumātua and do what they can to help them feel as comfortable as possible at all times. See Coline’s story (Pae Herenga participant) highlighting how she cares for her father.

End of life is a time when the traditional caregiving values and practices (tikanga and kawa) that have been handed down by tūpuna (ancestors), that kaumātua are familiar with, are actioned. Through their practical application, this cultural knowledge is transmitted (passed down) to their whānau. These tikanga can be role-modelled by kaumātua themselves as they demonstrate or teach their whānau how they want to be cared for and what tikanga (customs) need to be carried out to their satisfaction. This might involve instructions on how to prepare food in a particular way, it might involve the types of rongoā rākau (plant medicines) kaumātua want made into a pani (balm) and rubbed on their skin, or a specific karakia (prayer) they want said when they die. See Pae Herenga participants’ Rawi and Ngawati’s pūrākau and also Ned’s story, highlighting how they use their cultural knowledge of rongoā to care for kaumātua and whānau.

End of life care means caring for the spiritual health and well-being of the kaumātua and their caregiving whānau. Rongoā (treatments, remedies, solutions [to a problem]) is a spiritual healing system that helps to bring comfort by petitioning traditional or contemporary Atua (for example, Io Matua Kore, God, Jesus, Supreme Creator and Divinities) in reducing emotional and physical pain and symptoms. Rongoā includes a broad range of healing approaches. It can include any form of healing support that is generated and extended by Atua; its primary goal is to bring comfort and protection, and to clear negative or blocked energies. Rongoā lightens the emotional, mental, physical, spiritual energy, symptoms and pain of people and environments. The healing energy seeks to uplift and heal everything, and everyone involved in end of life care. The practice of rongoā can include, but is not limited to, karakia (prayers, incantations, chants), waiata (singing), karanga (calling), whaikōrero (speechmaking), hui (gatherings), rongoā rākau (plant medicines), mirimiri (massage), romiromi (deep tissue massage) and matakitetanga (prophecy, clairvoyance and mediumship). The use of humour is also an important rongoā that can help to lift and clear energy and raise the mauri (energy life force). See Pae Herenga study participant Huriana’s story which highlights the healing power of humour, and participants’ Arena and also John and Heather’s pūrākau on spiritual care.

There are many different forms of rongoā, and kaumātua and whānau may have specific preferences for particular rongoā they like. See Mary’s (Pae Herenga participant’s) story. Some religious faiths do not permit the use of rongoā, but it is up to each kaumātua and whānau to determine what is right for their kaumātua. Increasingly more kaumātua and whānau are using, or wanting to use rongoā support, particularly rongoā rākau as they know it can be very beneficial to them. See Pae Herenga study participants’ Ned’s story shown previously.