End of life care at home

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 (land), looking out to the moana (ocean), maunga (mountains), ngāhere (bush), awa (rivers) and other familiar landscapes or places they feel deep spiritual and emotional connection 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, particularly when they are dying.

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

[W]hen I think about… how I tried to awhi them [kaumātua] into the services that they’re slightly reluctant to go to (because they’re āhua Pākehā); if it could be done in the home [it would be better], 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… [where] everyone is - it’s home. So, if I was to think quickly 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 pain and symptom management is well managed is critical at this stage; it not only helps the ill and dying person but, it also relieves stress and heartache for their whānau.

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, zonked out or unable to be active in your day to day needs [is important]. 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 [ill person 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 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 to provide care. Sometimes, they may move from another country. They may have to give up employment to provide care or reduce work hours. Whānau go the extra mile to provide end of life care.

It can be difficult to bring whānau together to provide end of life care. GP Aroha helped whānau to talk about some of their concerns:

We look at 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 stand on our 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 breaking down the idea… they’re a burden, or that they’re weak and so on for asking for support.

Identifying each whānau member’s strengths and how they can help is an important aspect of in establishing care for a whānau member at the 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 we try and sort of build that [care] around that.

Recommendations

For health and palliative care professionals, we recommend:

  • If a death is anticipated to occur at home it is important to have a discussion with the kaumātua and their whānau about their wishes. What do they want to happen? Have a clear understanding of their preferences and ensure they know who to contact when things change.
  • Explore what type and level of support is needed by the whānau before the kaumātua dies. What support might be needed at time of death and also following death? Ensuring NASC are done regularly would be helpful. Explaining processes and possible scenarios that could take place at time of death could be helpful.
  • Visit the home to assess the level of care needed to support whānau. Whānau can burn out and providing respite (showering, administering medications) can be helpful. A trusted health care assistant who could stay in the home overnight and provide respite to a primary caregiver could make all the difference.

© Copyright 2022 Te Ipu Aronui

Website crafted by bocapa. Design by Sasha Maya