Some whānau may need support to provide care at home

Most kaumātua want to die at home, cared for by their whānau. Many whānau successfully carry out home-based care largely independent of health service provider intervention. However, carrying out 24/7 care often depends on the type illness, level of care needed, and the duration of care required. It can also depend on the number of people available in the whānau to provide care and the resources they can draw on to sustain caregiving over months or years.  A lack of resources (including whānau availability), geographical restrictions (proximity to health services and palliative care support), and the high financial costs associated with caring for the ill and dying, can place a significant burden on kaumātua and their whānau. Having timely access to needs assessments through NASC (Needs Assessment Service Coordination) can ensure that whānau get the help they need to undertake care at home when they need it.  It is common for whānau to put their ill and dying kaumātua first, often prioritising their needs over their own. Health professionals have an important role to play in ensuring the caregivers receive all the support they need to care for their kaumātua in a manner befitting the older person’s mana (status).

According to Matilda (community health care assistant) whānau members who provide full-time care need to have down-time for themselves:

… I do see sometimes it’s really hard for the family member that’s providing the care, and I have this sense of, ‘I think you really need to step aside and maybe go and get some fresh air,’ or maybe, ‘Just take 24 hours off.’ Because if I feel like it’s upsetting it’s going to be upsetting the client… it’s been on my mind. I’ve sensed it. I’m worried about it. And I’ve always gone back and everything’s ka pai, hunky dory, life goes on again. I kind of been in a situation where I, I think the carer’s going to blow… and it’s sad if the client’s going to be in among this [situation].

Matilda has observed that some family carers go beyond their own limits to provide care, even if they are unwell:

But I do wonder [when] family members [are] 24/7 caring and they won’t let go because, [quoting whānau member] ‘I want to do it.’ [Quoting herself], ‘But you know that you… aren’t good or aren’t well… take some time out.’

When whānau are first visited, they are often in shock and do not know what they want. Mary Te Awhi (hospice kaitakawaenga) explains that listening to the whānau is what is needed most:

… They also don’t know what my role might be. And sometimes it’s not always appropriate to try and go in, and say to whānau, ‘This is what I do. This is my role, this is my place at, at hospice.’ Sometimes it’s just about sitting down and just letting them talk, or I talk for a wee while. And then you start to read each other’s body [open up], it’s that relationship building thing.

When health professionals have a good understanding of Māori cultural values and end of life care customs they can go the extra mile to provide practical support to help people die at home, should they so choose, no matter who they are or where they are from. Pato (health care assistant) is dedicated to supporting whānau when someone dies:

[W]ell my boss knows. You know, I get really involved in my clients… and they give me a week off, something like that. [I’m] emotionally drained… after the death. But I have to go, I have to be there before they go to the undertakers…. [Then] I have to go back and see my other patients that are still here on this earth… And with that, I just go to the [client’s] house before they go to the undertakers, and the funeral day… I’m usually there [during work hours or] I’m on my way to go to there, sorta thing [when they die].

When Pato (health care assistant) visits patients she encourages whānau manaaki to have a break; to give them time out, and to also give her and the patient time together to build a rapport:

They [whānau] offer their services but it’s, you know, for them, it’s time [out] for them. They need to go do their own stuff. And this is how I build my rapport with my patients. 'See ya. Don’t need the whānau, I can do this,' sorta thing. Yeah, [whānau need a] bit of a breather.

A male Māori Chaplain spoke about the support his brother received before he died. He highlighted the family home was prepared with a walk-in shower and resources. He was grateful for the considerate care his brother’s specialist had shown:

I’m reminded a few years ago my brother who’s a year and a day younger than me passed on. One of the things that I remember quite distinctly was the fact that the resources he was able to attain; because he was actually given the choice by the specialist when he was in hospital, either to pass in hospital or whether he’d like to go home. Well most Māori will always say ‘I want to go home’ and in doing that, there were two people that had… redone his whole thing [bathroom] into a walk-in shower… they’d got the latest hospital bed into the sitting room and it was all those types of things, that really contributed to his, his passing.

Plus, his specialist came and mihi[‘d] to the family. Beautiful and he let all the whānau know where he was at, what was happening. And then [the specialist], his last words I remember is that, ‘I’m here to make his transition painless and seamless as possible.’ And for me ah, that’s you know, it’s beautiful. And this is the specialist. And I think he had a love for Māori culture. And he knew how everyone was feeling, all the family was feeling. But to have him come in, and he changed his medication because we could see the pain that my brother was going through.

Recommendations

For health and palliative care services, we recommend:

  • Support whānau who wish to provide care at home by ensuring that they have access to a supportive needs assessment process and that they are well resourced with home-based health care support, after hours support, information, equipment, spiritual care support, bereavement support and resources. For example, being able to access a health care worker who could provide respite at home would give whānau a much-needed break. This could help to sustain them to continue their caring efforts for a longer duration over the illness trajectory.

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