Challenges whānau face

Social issues and intergenerational trauma

Whānau carry a lot on their shoulders when caring for an ill kaumātua. However, if they are weighted down by social concerns this can 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 emerge and sometimes clash. Health professionals need support to work safely and effectively with whānau who have mamae (emotional, spiritual, physical pain). How will health services support paid and voluntary staff to care for whānau?

Whānau face many challenges

Māori whānau often show resilience when faced with adversities, although some are very vulnerable, and they may be in need of extra support. Māori have experienced the loss of their lands, alienation of their indigenous language, and exposure to assimilation and integration through othering education and health policies. Many kaumātua and whānau are struggling with intergenerational trauma that can be traced back to colonisation and ongoing colonialism. End of life care can be complicated by extenuating circumstances or factors including caring for:

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.

Whānau are diverse and working safely with whānau is a priority. A hospice kaiwhakahaere, Whaea Linda, has a quiet and soothing energy and it is healing for whānau to be around her. The following is a beautiful example that highlights Whaea Linda’s natural ability to build trust with whānau. While caring for a patient at home who had gang affiliations, she spoke about the way in which she approached the environment. She also helped the nurses to be comfortable entering 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 helpfully 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.

Co-ordinated care

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.

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.

Recommendations

For health and palliative care professionals we recommend:

Become 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 are exposed to today.
Alert your manager of any cultural gaps you identify in your service and keep following it up with management until the level of support you need have been provided.
If, when caring for a kaumātua at end of life you identify they may need help to manage a social problem within their whānau, it might be helpful to talk with the kaumātua and their immediate kin about what they want to happen. Rostering visiting hours and providing separate rooms or spaces for whānau who wish to visit might be helpful.

For health and palliative care services, we recommend: