Recognising and supporting inequities in palliative care

It is important to remember that socioeconomic circumstances can affect peoples’ options and abilities to carry out palliative care, particularly care that is carried out at home. Previous research we have undertaken highlighted that there are unexpected costs involved when someone is at the end of their life. Traveling to medical appointments, parking fees at hospitals, medications and increased utilitarian costs (telephone, internet, heating) are increased when caring for someone at end of life. Caring health professionals will find new ways to support kaumātua and whānau to manage the additional financial costs and associated medical care expenses that are needed when the person is nearing the end of their life.

Financial difficulties increase as kaumātua navigate the end of their life; GP K’s response is to waiver medical fees for kaumātua patients:

Cost is another one. So, you know, I often say to my palliative patients, ‘So you know how you used to book in, and you used to have to turn up at a certain time? Now we’re in a space where I’m going to allow you to come in whenever you need to. And there’s no cost to that.’ So, I try to, when they’re in that phase, make it easy, and then [say] ‘When you can’t come in, then I’m going to come to you.’ We’re not hard into that, but like I don’t make the GPs do that, but I, being the Medical Director, I like to lead by example. And I also am looking when hiring people, for that aroha. So, you actually have to be a special person to work in here because it is not for everyone. So that’s what we’re trying to attract; a kind, caring, empathetic, good communicators, understand kaupapa Māori. So, if you’ve got all of that, you’re probably going to end up treating and caring for your palliative patients similar to what I, what I do.

It is important for whānau to have a good connection with their GP so they can get the support they need at end of life. However, GP A. reflects that not all whānau have a doctor and some cannot afford to visit a GP:

Well they need to know who their GP is. They need to be connected to that person. I think in this day and age people are flitting and floating, they’re not connected because they can’t afford to go to the GP so that’s a real government, political issue isn’t it? So, because if they can’t afford to go, they don’t know who they are, how are they meant to get the support? So that’s a really big barrier. So, connecting them to their GP where… it doesn’t have to be a Māori GP, but maybe they’ve got a Māori ngākau. [A caring heart] is really important because they can understand that whānau a little bit differently, and without judgement... so what I mean is having a heart, a heart of Māori just being like understanding the Māori world. So that they know, and most of the time like we’ve got some GPs at [name of medical centre], who aren’t Māori, but they’re very- got at Māori ngākau. You’d think they’re Māori because they’ve worked there so long, and they’ve been born and bred into this culture of [name of place] that they feel like they’re Māori and they know exactly in their eyes how they want to treat somebody.

Increased costs associated with end of life care - wairuatanga, whanaungatanga, manaakitanga

There are additional cultural costs for whānau as they have a cultural obligation to manaaki (host, care) for family and friends who arrive at the house to visit the ill or dying person. Kai (food) is provided to guests not only to nourish them but it is also used to clear the energy associated with visiting the ill or dying person at this tapu (sacred/restricted) time. Te Awekotuku (2007, p.4) defines ‘tapu ’as providing the means for the practical application of spiritual protection:

"Tapu is about maintaining balance, about keeping people safe, about protecting each other, and the ensuing generations. Tapu is exercised or sustained because Māori consciously decide to believe in it; it persists because it works. Tapu is about survival and resilience..." 

Te Awekotuku, N. (2007, 16-18 November). He ngārahu tapu taku ngārahu: forbidden or foreboding? Concerning Tapu and Moko Māori. Paper presented at the “Taboo”: The Forbidden / Forbidding Subject of Anthropology - the 32nd Annual Conference of the Association of Social Anthropologists of Aotearoa/New Zealand, University of Waikato, Hamilton, NZ

Mary Te Awhi (hospice kaitakawaenga) commented that for some whānau what is important are the day to day things; housing, finances, food and transport. Talking about their illness and the impact it is having on their life often comes later:

To do with the illness or their needs, sometimes if we feel comfortable with one another… the one question I might ask carers and whānau, and our tūroro [patient] is, ‘In this time and moment, currently on this day, what’s the most important thing?’ They will come up with all sorts of things. Because I know when you’re being open, asked an open question immediately you’re thinking ‘what are they asking me?’ So, they might think of all those things that feel real. And it might be things like housing and financials and food, and where we can get a mirimiri [massage], and transport and [about] the power bill, and the doctors’ bills. And then gently you can start to get into how the illness is actually affected their lives, or where there’s journey’s come from, or where’s its going… Yeah and I tend not to ask invasive questions. I tend to let them feel their way until we’re both comfortable with each other.

To gain a deeper understanding of where whānau live it is important for nurses and doctors to see the remote areas where some whānau live and the long distances they have to travel to get to urban health service provider locations. Joy (health professional) tries to help create a more holistic environment for Māori whānau by introducing new (non-Māori) staff to the communities they work with. Although the hospital provides a bus to transport whānau, it is not accessible to all whānau. Joy explains the difficulties whānau face with travel; some whānau have no transport and they live in remote areas on gravel roads. Some have to cross water:

How do they travel? How do they get there? I mean we’ve got the hospital bus but that’s not suitable for some people. I mean… we’ve still got metal roads, windy roads and yeah so some have to come across on the ferry from [place] to come down so.

Joy often goes the extra mile to support whānau to access transport so they can attend their medical appointments:

...so that’s one of my roles as well, is making sure that they can get down [to health services for treatment] and how are they going to come? Or [I] book them on the bus and we’ll make sure they’re booked on the bus… [A] lot of health professionals say, 'oh well we’ve got to maintain their independence and let them do it.' I said 'no sometimes you got to guide them. You’ve actually got to guide them, step by step. Be there with them, and once they’ve got it, they’ve got it. They can do it themselves; but sometimes they’ll just say ‘oh well you can just [say to the family] here’s a number… ring them, catch the bus’. But some whānau can’t do that yeah. I had a patient and, oh for some of them, not just one, I’ve done it for quite a few, that have had to go to [health facility in the city]. So, what I do is I write it down step by step; each day, what time, you know, what time you’ll catch the bus here. Where do you get off? Where you’re going to from there like to the [cancer clinic]. So, what time you’ll get there. And where do you go to from there. So, you’ve got to do it step by step. Each little step you’ve got to write it down.... Yeah and that’s just [to] reassure them… then they feel quite comfortable; they feel, a bit safer to know exactly where they’re going to be at what time even, yeah.

Financial support and resources available to whānau

Some kaumātua do not know they are entitled to financial support via Work and Income New Zealand (WINZ). In some circumstances whānau may also be entitled to financial assistance to help with the costs of a tangihanga/funeral service. When people are diagnosed with a life limiting illness and they have to stop work, this puts whānau under financial pressure. Whānau entitled to apply to for financial support through WINZ. 

Joy (health professional) identifies that applying to WINZ can be a big barrier for whānau. WINZ provides an online system for people to fill out forms and this is obstructive especially for kaumātua and kuia who don't even have a computer or know how to use one. Joy commented that WINZ are not good at letting whānau know what they are entitled to, and in her nursing role it is very common for her to hear whānau say “I've been to WINZ and they won't do nothing.”

Recommendations

For health and palliative care professionals, we recommend:

  • Become aware of the support that statutory services provide, such as Work and Income New Zealand.
  • If you observe kaumātua and whānau who are struggling financially ask them if they know about WINZ and the financial support that is available to help.

Resource

Gott, M., Allen, R., Moeke-Maxwell, T., Gardiner, C., & Robinson, J. (2015). ‘No matter what the cost’: A qualitative study of the financial costs faced by family and whānau caregivers within a palliative care context. Palliative Medicine, 29, 518-28.

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