Health information

Navigating the health system

The health system is complex and navigating it can be very difficult even when you have health literacy. An important role of health and social care professionals is to increase the health literacy of the kaumātua and whānau. Having good communication is important for ensuring kaumātua and their whānau understand what the health team is trying to convey. Good communication is critical if whānau are to obtain and understand information about the diagnosis, prognosis treatment and care plan (palliative care health literacy).

Whaea T. (health professional) described how she creates information packs for her whānau clients, so that they are aware of what resources are available:

I do an introduction, a folder of the service. And on the front, it’s done by the PHO it’s… information... And it’s got all the GP clinics… contact details… it’s got, ‘if you’re going to any GP appointments, make sure you’ve got answers for all these types of conditions’ and that… I made my own folder, presentation folder for each whānau about my service and what resources are within the community and that… And 0800 numbers… But yeah… [I] make sure that they understand before they go to the GP, write down everything, like what that little card is doing on the front of your folder… informing them of their rights… to treatment… and a lot of them are still trying to find that confidence and self-esteem.

Joy (health professional) explains that when Māori patients are first told of their diagnosis they are in shock; all they hear is the word 'cancer.' They often don't hear all the information the health professional is saying. Patients are advised to bring whānau with them, for support and also to help with the information been given.

...Well I think for them [whānau] they’re in a state of shock and I know the health professionals, they talk to them about what’s going on, their diagnosis. But the patient doesn’t really hear that. All they hear is the word 'cancer.' And, they may click on to a couple of things but everything else is a blur for them. It’s not until they go home [they can absorb what is happening] and that’s why we always encourage them to come with whānau, to sit with them, because they miss a lot of what is being said. And I think for them at that time, it is about that whānau support. But also, someone [to be there], you know for staff, the way staff communicate with them is really, really important…to be kind, to listen. And just to have that ah, that trust for them to gain that trust in that person.

Sometimes when things aren’t going right for whānau they may get upset and express this in different ways. GP A. commented that they may get emotional and this often gets misread:

And you know, and I always like, sometimes it’s really difficult for me, even as a Māori, when Māoris are going at me, you know, like… and I have to tell myself you know, ‘this is okay, let them go’ and then, you know once they’ve settled down just come back and say ‘look I can hear that you really love [this person] you’re caring for them.’ And this isn’t even just in palliative this is just general. The frustrations I’m hearing at the moment you know, ‘I’m trying my best, to do the best I can, and I’m on the same waka as you guys.’ You know like and I think sometimes that’s all they need to know so that [I’m expressing] ‘I’m here for you and I’m fighting for you and I’m your advocate,’ you know…. However, we may say that, or convey it, that it’s really important because whānau feel that you know, and so I think blocking whānau from having the say is a major thing that can hinder healing. And it happens because we’ve got time constraints in hospitals and in GP clinics. We’ve got all these constraints and again I come back to time.

Hui (gatherings) are usually the preferred cultural method for kaumātua and whānau to meet the health care team (and it may be easier to hear difficult news when whānau are together as they can support each other).

Communicating to patients in a manner they understand can be done in multiple ways depending on what is right for the individual. GP K. highlights a whānau hui benefits the whole whānau and helps to ensure everyone understands what is happening:

But these days we’re trying to plant the seed at diagnosis so that it’s a little bit more, it’s not something that you’re bringing up when, you know, two days before they’re heading into dialysis. Like it probably was in the old days… especially in our clinic where we have quite low heath literacy. So, it’s sometimes I will draw pictures. I never give brochures to be honest, because I don’t know that they’d get read. Ah so I, I’m not a fan of brochures, but certainly [I] draw pictures, lots of whānau hui, you know, this is the thing you can’t just sort of have the- Unless the patient wants, if the patient just wants a one-on-one, and there are a couple out there that just don’t want anyone else to know, and that’s pai tēnā [that’d fine]. But… whānau hui is the way, way forward for a lot of our whānau and… that’s good because you can. It’s time consuming, but you can get to the point and get everyone on the same sort of page and hear everyone’s concerns in one, in one go.

At the time of her Pae Herenga interview Coline had cared for her father since his diagnosis with stage four chronic kidney disease (renal failure). Since Matua Colin’s diagnosis, he had both legs amputated and was also receiving dialysis several times a week. Coline has been caring for her father for the last 8 years and moved from Australia back to New Zealand in order to carry out this role:

Okay so Dad’s now a double amputee and he has been for two years, I think. And he’s on dialysis three times a week due to diabetes. Renal failure they call it. End stage renal failure. He’s probably been like that for the last 8 years...The renal doctors, well they came out, visited a few times, and they thought ‘oh he’s okay’. So… that was initiated from the renal doctors. And I guess, quite a few times the doctors have told me, ‘you know it’s not a good- not a great prognosis for Dad’ and I know that. Have to try and tell Dad that. Sometimes, you know he has said to me ‘they think I’m going to die - what they think I’m going to die? like it’s a surprise or something’…Yeah and I’m sort of stuck in the middle. So, I’ve got to try not to take on board what they’ve said and then not let it get [to me]. But, yeah. It’s hard.

Face-to-face hui are more personal; they provide an opportunity for those in the physical (and metaphysical) realms to join together to support the aims of the hui (gathering), wairua (spirit) to wairua (spirit), breath to breath. This connection is crucial at the start of the relationship and may be modified as time goes on. However, since COVID-19, we have to consider new ways to connect with kaumātua and whānau. Telecommunication, audio-visual methods, written or diagrammatic methods as well as texting and Facebook messaging are all helpful ways of communicating.

Joy (health professional) explains the importance of having Māori whānau support at hui, particularly attending consultant appointments:

I think too they can support [whānau], they support [the] patient... by taking on board what’s been told so when they go home, they usually have a meeting and talk about what’s been discussed at the consultation. Also, for them to know what services are out there as well that can benefit the patient… Sometimes it’s just a whānau hui but if they want me to be part of that then I’m more than happy to do that.

Recommendations

For health and palliative care professionals, we recommend:

Ask kaumātua and whānau when they feel the best time would be to talk to them (have a ‘difficult conversation’).
Engage with kaumātua and their whānau by having conversations that involve them. It is important to listen, really listen and not to assume you know what is going on for them.
Continue developing good listening skills. Listen to whānau (including kaumātua with a life limiting illness) and give them an opportunity to ask questions, clarify information and provide clear instructions in different formats and at different times (verbal, written, pictorial and online, for example).
If you are prone to using medical jargon (acronyms), explain what the terms mean (verbally or diagrammatically). A common issue that whānau grapple with is the use of medical jargon or acronyms.
Create a safe space for whānau to talk about what is happening for them. It is important to create a safe space for whānau to communicate their needs, concerns and expectations. Being transparent and truthful with all communication and dealings is helpful. If you do not know something, say so. Carefully and sensitively explain what they want to know. Be generous; share what you can, where you can, when you can.
Be aware that every kaumātua, like every whānau, is different; some may want a lot of in-depth information about diagnosis and prognosis. Some may want to know how long they might have to live, and others may not. Some people may find it helpful knowing what to expect when the person dies (what will physically take place given the type of illness) while others may not what to know. Ask how much the kaumātua wants their whānau to know about their condition and treatment and who they want included in the discussion.
Ask kaumātua who they want to be present at their health care team meetings. If people cannot attend meetings in person, they might like to attend on a social media platform (FaceTime, Skype, or Zoom, for example). Health and social care services’ staff should be well resourced, and be technically literate, to manage virtual meetings.
Share information about the illness (or health issues) with kaumātua and whānau in a transparent way. Effective communication between health professionals and whānau is critical.
Include whānau at every stage of the older person’s end of life if this is wanted by them; this inclusive approach can help the kaumātua, their whānau and their health care team to stay connected and on track.
Be prepared to repeat vital information to the same person, or different people, at different times, as kaumātua and whānau can find it very difficult to absorb information in times of stress. Be patient, you may have to repeat yourself if new whānau members arrive and need to hear the information again (they might well be a primary carer and the most appropriate person).
Do everything you can to ensure kaumātua and whānau understand what is being said about their diagnosis, treatment, prognosis, processes and changes. Being able to understand what is happening, or is about to happen, will help the kaumātua and their whānau carry out important instructions, such as taking the correct medications at the right time with or without food, for example.
Establish effective communication to help the kaumātua and their whānau process and manage any changes in physical symptoms. This is essential for bringing them to a full understanding of what is happening and what their choices are.
Help kaumātua and whānau cope with unexpected changes as change is inevitable at end of life. The ill person and their whānau should be kept abreast of any changes as they appear. Take care to explain what the changes mean from a diagnostic or treatment perspective. This needs to be relayed in simple terms back to kaumātua and whānau. When whānau understand what is happening they can make good decisions and begin to put their care plans into action (or activate tangihanga (funeral) plans). This can take time and decisions cannot always be made quickly; whānau may need to consult others in the whānau before coming to a decision about treatment, or stopping treatment, for example.
Include kaumātua who are well enough (and who want to be involved) and their Enduring Power of Attorneys (medical and/or legal) in any conversations concerning their diagnosis or prognosis. This is empowering for them and everyone else. You could ask questions like, “How do you want to know, what format and, who needs to be included?”