"Kotahitanga is a process where whānau come together as a collective and make unified decisions. "

Kotahitanga is a process where whānau come together as a collective and make unified decisions. When the kaumātua, whānau manaaki and their health care team are aligned, they will have a powerful partnership; this health alliance can ensure the care provided to kaumātua is of the highest standard. Bringing people together to converse sets the intention for everyone to be on the same page. When there are robust cultural processes in place everyone can participate in an open transparent dialogue and information can be easily clarified.

Health and social care professionals must be prepared for some discussion and debate. This is a positive and respectful process that ensures everyone understands what is happening and everyone has an opportunity to be on the same page. Bringing people together makes room for the airing of past issues. Sometimes it is acceptable when voices are raised as people express themselves and express mamae (emotional pain) while working towards kotahitanga (consensus through unity).

If whānau do not understand something that is said, they may feel too vulnerable or embarrassed to ask for clarification, or they may be feeling overwhelmed or extremely stressed. Silence does not mean agreement. When either party bottles things up it can create a blockage in the relationship and can result in resentment. In some circumstances, a skilled mediator or community leader who is fluent in te reo and is experienced working with Māori communities may need to be seconded to support a whānau hui.

Mary Te Awhi (hospice kaitakawaenga) described how difficult it can be for whānau to understand health professionals and how not being listened to can impact kaumātua emotionally, spiritually as well as physically:

They [Western health services] give us tests, they give us diagnoses, they give us medications and treatments and then when they’re ready they send us out, and they say ‘we are sending you home and we’re going to put you back under your GP for recuperation’. That’s not totally true because the GP doesn’t have time. And so, what happens is a lot of people just get sick again. They don’t heal properly and when they don’t heal physically, they don’t heal mentally and socially. And this kuia, her daughters, her two lovely daughters, got together and they decided, they said to their mum, ‘What about some respite somewhere?’ And so, she actually agreed to it. I was totally surprised. And they found a rest home for her to go to. She agreed to go because it was about wellness. She ended up there for a month in respite.

Mary Te Awhi (hospice kaitakawaenga) described how difficult it can be for whānau to understand health professionals and how not being listened to can impact kaumātua emotionally, spiritually as well as physically:

They [Western health services] give us tests, they give us diagnoses, they give us medications and treatments and then when they’re ready they send us out, and they say ‘we are sending you home and we’re going to put you back under your GP for recuperation’. That’s not totally true because the GP doesn’t have time. And so, what happens is a lot of people just get sick again. They don’t heal properly and when they don’t heal physically, they don’t heal mentally and socially. And this kuia, her daughters, her two lovely daughters, got together and they decided, they said to their mum, ‘What about some respite somewhere?’ And so, she actually agreed to it. I was totally surprised. And they found a rest home for her to go to. She agreed to go because it was about wellness. She ended up there for a month in respite.

Nurse N., described her key strengths’ that assist her to work with kaumātua and whānau within a hospital setting as ‘time’ and ‘communication’:

[S]o for me, it would be the time and the communication with the family. You’ve got to make sure… you’re able to communicate as per the family’s need… [The] ones we do get fluent [in te reo Māori] are from [name of place]. And then I’ve felt ‘oh got to really watch [myself]. But they’re the ones that say ‘come’, yeah… You’ve got to watch… because I’m Māori… it just comes naturally to know what you need to be careful of [tikanga side of care].

Every health and social care professional should have effective communication with kaumātua and whānau manaaki. Ideally, effective communication (clear communication style, easy for people to understand what is being conveyed, safe space for kaumātua and whānau manaaki to ask questions) will result in health professionals having an understanding of the end of life care wishes and preferences of kaumātua. This will support kaumātua and their whānau manaaki to achieve the outcomes they want and will help to reduce inequities within health services. Going the extra mile is contributing to building a compassionate community.

Pato’s (health care assistant’s) networking and communication skills extend to asking for her patients’ fees to be waivered:

So, I gotta go and look for people that will do it for nothing… when I ring them [health services] and tell them the situation [about the whānau], they go, “Um, ok, I will do this for free, but I will do the referrals so that way that they don’t pay, that day on.” Yeah. That’s how it’s been going and I’m going, “Oh thank you, thank you, thank you.” Yeah. Oh, I’m so grateful... I was quite amazed

Nurse N. explained that her key role is communicating with whānau to understand their needs so that she can provide support for them at this time:

So, more communication and listening skills for the family. There is a point, and having the trust, with the whānau you know. Someone that they can, you know there’s times in the ward and that nurses might stress out and [be] too busy… just quite stressful where the whānau can’t approach them. But as long as they know you’re approachable with whatever they need. That’s pai [good].

Kim (community worker whānau manaaki) provided an example of advocating on behalf of kaumātua as they were not always open to saying what was happening for them, or accepting help, especially if health services try to contact them:

… So sometimes I’ll go down and I’ll advocate so- because they’re not going to tell… that’s what I find with our whānau. If you go, they ring up and they go, ‘Oh, how are you?’ ‘Oh, I’m fine.’ ‘Do you need help?’ ‘No.’ But actually the answer’s not ‘no’, it’s actually ‘yes’. And this is where I find a lot of people don’t get [the help they need] because what I found (I’m going to be jumping all over the place because I work with so many different organisations), but what I found with like access… they [health and social care organisations] don’t actually come out and see what the situation is. And they’re ringing from the hospital to see what the need is. And then you know, they’re ringing up and asking, ‘Can you shower yourself?’ Well of course our people are straight away going to say, ‘Course I can shower myself.’ You know? But really, they can’t, they might fall over, they’re getting dizzy you know? … I think that’s a flaw down there [in our rural community] because they need someone; that’s why I be that person…

Sometimes Kim helps kaumātua within her community without their knowledge:

…So, if I can hear- I’ve got my ears out all the time, you know, listening to what’s going on, what the need is… ‘Oh blah, blah, blah’s got Alzheimer’s.’ And sometimes I’m telling on people, but they don’t know… I marry all these things up and they don’t even know, you know. I’ve helped them with their WINZ, I’ve helped them with their benefit… you know, to make sure that they’re getting disability allowances.

Kim could only recall upsetting one person in her community through advocating for her although, as she explains, the kaumātua obviously was in need of support:

… I’ve had one person that’s been upset with me that did that, ’because I did that. But guess what? She ended up in hospital two days later because to me the hospital sent her home too early…

Recommendations

For health and palliative care professionals, we recommend:

  • That a good way of bringing everyone together is to work with kaumātua and whānau through a process of hui (meetings). Creating the time, organising a place, and bringing people together makes room for the discussing any issues the whānau has. This process can assist whānau to understand what the health issue is, what the treatment options are and what lies ahead; they will be able to identify their goals and prepare themselves to carry out their care plan.
  • Setting the right cultural processes in place in the first instance as this will enhance the outcomes of the hui. This may take a longer time, but the outcome will be more satisfactory for everyone.
  • If it seems as though things are not going very well during a hui, especially if people have conflicted views about a particular issue, make sure the kaupapa (agenda) is adhered to. It is important that everyone feels as though their point of view has been listened to and there has been an opportunity to find a middle ground or compromise.
  • Being aware that silence does not necessarily mean whānau understand what is being said.
  • Enabling whānau to be present during hui. It may be necessary to offer consultations via multi-media to include whānau and health professionals who cannot be there in person.
  • Becoming great advocates for kaumātua and whānau manaaki. Being an advocate means doing everything you can to ensure that health care is equitable (fair) and seamless for kaumātua and their whānau.
  • Upholding the mana of kaumātua and their whānau by speaking up if you notice that something is wrong within the health system and kaumātua and whānau manaaki are being unfairly treated. You can be a good advocate if you see whānau manaaki struggling (overwhelmed with exhaustion or experiencing financial or social issues, for example); offer help and enlist the support of others who can offer assistance.

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