Whānau manaaki have a lot on their shoulders when caring for an ill kaumātua. However, if they are weighted down by social concerns this will exacerbate their stress. It is important to be aware that social complexities can mean that there are competing needs within the whānau that have to be taken into consideration when someone is nearing death.

There may be financial worries or tension escalating within the family. For example, a kaumātua may have a mokopuna (grandchild) that has an issue with drugs or alcohol who may not want to follow hospital visiting regulations. Or family members associated with gang culture who wear their patches into a hospice for example, may offend other whānau members who cause friction by asking them to remove their emblems. As the illness progresses and more time and space are required by whānau to be with their kaumātua before death, problems can arise as the different life histories, values, tikanga and preferences of individuals begin to clash. How will health services and health professionals manage this?

Whānau are diverse and it can be challenging visiting some whānau who are gang affiliated. Whaea Linda’s (hospice kaiwhakahaere) energy is quiet and soothing and it is healing for whānau to be around her. The following is a beautiful example that highlights this and Whaea Linda’s natural ability to build trust with whānau. While caring for a patient at home who was affiliated with a gang, Whaea Linda spoke about the way in which she approached entering the environment. She helped the nurses to be comfortable in that setting:

[H]ard out core gang related. Hard out core. And that was the most beautiful experience. Beautiful. I say it was [a] beautiful experience in the whole wide world because he let us into his life. At first, he was reluctant. But we were, I think we were brave going into his house, into his life, because it was like gang and- but then as I was going into their place and talking with one particular patient, I thought to myself, ‘Well, you know if he wants our help nothing will come to harm us. Nothing will come to harm us. And his friends will feel the same.’

That’s my thinking I don’t know if I was right on that line, but that was my thinking. So, their friends wouldn’t deprive their friend of getting cared for, well cared for. That, well that was my thinking. I thought, ‘Okay, well I’ll be brave. I’ll go in and kōrero with him, and kōrero.’ And it was okay. Well I helped our nurses not to be scared either. Because it was a scary atmosphere that we had to go into this particular gang. Because it was a mix, mixture of gang related he was connected to. A mix of all. Yeah... [Where] he lived, his room was dark and dingy. It was pretty [freaky] in there.

A male Māori Chaplain discussed how one hospice allocated space and helped the whānau members agree to different visiting times as a way of managing family tension while still allowing the whānau to carry out their cultural care practices:

The hospice itself ensured, where they could, that they had two rooms for people to gather in, and open for people to bring kai in, and [they] knew that people would be coming all hours of the night. Now I think the defining point for me was that the strain and the stress didn’t show on the staff. And they were- they’re right into manaaki. There was a smile, they knew what was going on and, they knew that there was family tension, so they helped facilitate times in and out for different families to be together, and [family] had some private times, and had some sort of shared open times.

 

They were able to facilitate that with the other whānau member[s]… we were able to have karakia and do all those sort of things. And that’s where I think the hospice at that stage did a really good job in ensuring that everyone was cared for, and everyone (ah in terms of mana, manaakitanga), that was all kept intact, that was good.

Māori whānau are resilient, although some are very vulnerable and may be in need of extra support. Māori have experienced the loss of the majority of their lands, alienation of their language, and they have been exposed to assimilation and integration policies through education and health. Māori are experiencing the legacy of this today. Some kaumātua and whānau are struggling with the impact of intergenerational trauma. The end of life care can be complicated by extenuating circumstances or factors:

  • kaumātua who are in prison and their whānau
  • kaumātua with serious mental health issues and their whānau
  • kaumātua with drug and alcohol addictions and their whānau (who may also have addiction problems)
  • kaumātua who are differently-abled or disabled and their whānau (Tāngata Whaikaha – Māori with a disability)
  • kaumātua who are pōhara (poverty stricken, hard-up) and their whānau
  • kaumātua who live in different ways (different lifestyles such as, gang affiliations, members of religious sects)
  • kaumātua who or are homed differently (un-homed, transient, living rough)
  • kaumātua who have removed themselves from their whānau or who have been removed by them.

A well-co-ordinated palliative care approach involving health, palliative care and social care professionals, Māori hauora and whānau helps to provide good support at end of life.

Matilda (community health care assistant) has seen the value of great co-ordinated care and good communication between doctors, hauora and other health providers.

And I’ve seen families very relaxed and embracing, as well as the clinical [team] yeah… good coordination of care…Beautifully [done], I’ve not seen anything different.

Māori are still struggling with the impact of colonisation. Palliative care needs to be equitable requiring appropriate and timely management of all physical, emotional/psychological, social and spiritual problems as they arise. This will require interdisciplinary teams working in collaboration with each other and with the kaumātua and their whānau. Helping whānau with the many challenges that confront them can be stressful for them, and for health and palliative care professionals. Establishing relationships with Māori cultural experts will help to strengthen the team to support kaumātua and whānau manaaki who may be vulnerable. Some organisations may be fortunate to have employed Māori cultural support, such as Kaitakawaenga, who have expertise in working with whānau who have a high level of social care.”

Recommendations

For health and palliative care professionals, we recommend:

  • Becoming familiar with New Zealand’s history and the colonisation of Aotearoa and its Indigenous people to help increase your understanding of the inter-generational trauma and social difficulties that many Māori whānau face today.
  • Alerting your manager of cultural gaps, you identify in your service and keep following it up with management until the level of support you need has been provided.
  • When caring for a kaumātua and you need support to help them manage a social problem within their whānau, talking with the kaumātua and their immediate kin about what they want to happen. Rostering visiting hours and providing separate rooms or spaces for whānau might be helpful.

For health and palliative care services, we recommend:

  • Undertaking robust social and cultural assessments with kaumātua and their whānau manaaki to help identify if there is a need for specialist cultural, spiritual and social support.
  • Finding a Māori support person from inside your workplace as well as from the Māori community in your area. For example, seek out, and liaise with cultural experts from your local Māori community such as a Māori health provider or a Whānau Ora Navigator. They can advise you on the best way to help the kaumātua and their whānau.
  • Discussing with staff who support whānau, the establishment of appropriate cultural supports. This may include setting up a support group (Rōpū Kaitiaki or a group of Māori kaumātua and cultural advisors) to provide helpful cultural advice and support.
  • When establishing any support or advisory group, that the initiative and any cultural expertise/advisors involved are appropriately resourced (for example, meeting space, kai (refreshments), reimbursement for time and travel expenses).

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