Kaumātua normally prefer to be cared for at home by their whānau and they generally want to die at home; they like to have their familiar things around them, be near their whenua (lands), looking out to the moana (ocean), maunga (mountains), ngāhere (bush), awa (rivers) and other familiar landscapes or places they feel deep spiritual and emotional connections to. However, sometimes their deteriorating health can result in them using a hospital or hospice service, and sometimes they may need support of a Residential Care Facility. When kaumātua lose their mobility, increasingly become more tired, breathless, and experience nausea and pain, their whānau will want to stay with them and care for them. If they are staying in a health care environment, then whānau will want to stay with them day and night.

On further reflection GP K. talked about the importance of home for kaumātua at end of life:

I sort of think when I think about… how I tried to awhi them into the services that they’re slightly reluctant to go to because they’re āhua Pākehā; if it could be done in the home, like a lot of my whānau [patients], don’t like leaving their home. They want to stay in the home. They want to be in the home with their loved ones, where they know, where the cat and the dog are and you know everyone is, it’s home. So, if I was to think quick about, what another model [of end of life care] would look like, it would be around home. Around, you know where you’re from, if you’re living in the place where you’re from, with your supportive whānau around and not having to move out into somewhere foreign.

Most Māori want to be cared for at home and die at home. However, whānau do not always have the ideal social circumstances to make this possible (having a warm, dry house is important) and having whānau to provide end of life care is essential. Ensuring that any pain and symptoms are well managed is critical at this stage.

Matilda (community health care assistant) spoke about the importance of good pain management as this helps the ill whānau member remain active and comfortable for as long as possible:

… I think to be pain free and comfortable throughout the whole process, but not that you’re going to be, um zonked out or, or unable to be active in your, you know, day to day needs. I think they [health professionals] need to be [providing] adequate and good pain relief… the Graseby pump, the palliative pumps they use for comfort…Yeah and allowing them [to] get up and go and have a wash without great struggle.

On a home visit Mary Te Awhi (hospice kaitakawaenga) explained that there are things that health professionals should not do when vesting ill kaumātua and whānau:

One of the things that really scares people, anybody (you don’t have to be Māori), is somebody rocks through their door, literally demands to come through the door and says, ‘Right, we’ve got a lot of paperwork to do and I’ve got to get to my next appointment in 30 minutes. So right, how’s your bowels? How’s your pain? Are you, well, you should be taking that pill this way?’ Really? No. No sorry. No don’t do it. You know.

Adult children and mokopuna often live at a distance to kaumātua sometimes leaving only one or two caregivers to carry out end of life care. Whānau manaaki can become very fatigued and stressed; particularly if they are not supported to take breaks, or they care for others, and are financially stretched (live on a lower income).

When whānau live in different places it can be difficult to bring them all together in one place to provide care. Aroha (health professional) helps whānau to talk about some of these concerns:

… we look at their network, their whānau network. So that’s what we do. We look at that and how they can utilise that network to help them out… it depends on the family, but it’s pretty scarce at times because there’s whānau all over the world. And, people in our society, I guess, aren’t good at relying on one another because we’re so independent and standing on your own two feet... And so, it is really hard for them to sort of do a 360 [degree turnabout] you know, and look at ‘how do I ask for help or how do I accept help?’ So, we do a lot of kind of breaking down that- the idea of that they’re, you know, a burden, or that they’re weak and so on for asking for support

There is only so much people can manage. Sometimes a main caregiver has to move homes (sometimes from another country), reduce work or give up employment to provide care. However, the participants in the Pae Herenga study highlighted that whānau happily go the extra mile.

Many whānau are disparate, and when they’re living in different places it can be difficult to bring them all together in one place to provide care. GP Aroha helped whānau to talk about some of these concerns:

… We look at their network, their whānau network. So that’s what we do. We look at that and how they can utilise that network to help them out… it depends on the family, but, it’s pretty scarce at times because there’s whānau all over the world. And, people in our society, I guess, aren’t good at relying on one another because we’re so independent and standing on your own two feet... And so, it is really hard for them to sort of do a 360, you know, and look at ‘how do I ask for help or how do I accept help.’ So, we do a lot of kind of breaking down that, the idea of that they’re, you know, a burden, or that they’re weak and so on for asking for support.

Identifying each whānau member’s strengths and how they thought they could help was as important aspect of Aroha’s work in establishing care for a whānau member at end of life:

And usually, we’ll have sort of a family meeting, a whānau meeting… and we’ll talk about the strengths of everybody you know what are the strengths and where do they fit in within the network? And try and sort of build that around that.

Recommendations

For health and palliative care professionals, we recommend:

  • That if a death is anticipated to occur at home it is important to have a discussion with the kaumātua and their whānau manaaki about their wishes; what do they want to happen? Have a clear understanding of their preferences and ensure they know whom to contact when things change.
  • Exploring what type of support, and level of support, is needed by whānau manaaki before the kaumātua dies, at time of death and following death. Ensuring NASC are done regularly would be helpful. Explaining the processes and possible scenarios that could take place will be very helpful.
  • Visiting the home to assess the level of care needed to support whānau. Whānau can get burned out and providing care to give much needed respite (showering, administering medications) can be helpful. Services may be well resourced and can offer a trusted health care assistant to stay in the home overnight, providing respite to a primary caregiver, for example.

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