Effective communication between a patient and a healthcare provider is an essential part of good healthcare. People in this study told us about what happened in practice, how they liked to be treated, and the characteristics that they liked and disliked in their healthcare provider’s manner.
Participants wanted the healthcare provider to listen to what the person is actually saying, not what they expect to hear, and show empathy. They wanted to feel supported in their efforts to manage their asthma; to be provided with explanations as to what to do and what needs to change. Some people were happy with their relationship with their doctor, but others said that they were made to feel to blame for their illness, or simply not believed. Marion wants doctors to acknowledge that people may need time to adjust to the severe asthma diagnosis; it may take time before people become confident about getting on top of acute episodes.
Gaye didn’t feel she was being listened to.
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It’s hard to say. He was listening but he wasn’t listening to what I was saying. He was hearing it but he wasn’t interested in what I had to say for the outcome, he was going to decide it. It was probably and that being the same thing. I just felt like I wasn’t- he turned off on what I was actually saying.
Mick wants support not criticism.
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Building people up is a good thing. It makes me feel comfortable as a patient and hearing things from the doctor, only positive things, is fantastic. Being upfront obviously is what you want to do too as well but being positive. No criticism what you may have done or not done previous is not gonna help. But any support like that is great. Just being supportive, being upfront, tell them how it is, is a good thing.
Leanne felt like she was an inconvenience.
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Well, don’t tell them that it’s all in their head and they brought on their own asthma attack. That’s not patient care. Sit down, listen to the person. If they’ve got an issue, try and work with them through it. Not turn around and say well it’s your fault this happened, it’s your fault that happened. That’s not how this works. We’re already sick, we don’t need you sitting there telling us you know it’s our fault that we’re keeping you in a job. OK. No worries. It’s some of them make you feel like you’re a real inconvenience to them and that shits me, more than anything. I said, ‘I didn’t ask for this disease. I didn’t ask to be put in here.
Participants spoke about the kind of language that they preferred from healthcare providers during consultations. They wanted healthcare providers to use language that is positive and understandable, not technical. Feedback is important- not just head nodding.
Michael feels patients should seek explanations from health providers if they use jargon.
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I think the other thing about doctors is that sometimes they might use medical terms. Query them. What does it mean? Get them to talk in a language you understand that actually, you don’t want to have a medical dictionary to look up what on earth they’re talking about. Just make sure you understand what the doctor’s saying, which means the doctor has to find the right information for you and present it in the right way, but doctors are much better at that these days. Even specialists, some of them, anyway.
Lauren was frustrated that she just got head nodding and no feedback.
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I feel like at the moment maybe it’s frustrating and maybe this is literally just me as a person but I feel like you could tell someone about an experience and all they’ll do is just nod. And I’m like I just need a bit of context. Like, was that bad? Should that not be happening? Like, all this sort of stuff or like is it normal and that, “Yeah, that can happen when like blah, blah, blah”. Like I don’t know, I just need some context. Whereas at the moment I guess it’s, like, very one way. Like, I’ll just tell you what happens and it’s like they’ll nod and all that sort of stuff.
Participants in our study revealed that they don’t always tell healthcare providers everything, and that they tell different things to different healthcare providers. Some found it easier to talk with their GP rather than a specialist as the GP knows them better. Some participants expressed that patients need to be open and not afraid to ask questions; not all participants felt comfortable to do this.
Marg has felt intimidated with some healthcare providers.
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Probably, yeah, particularly if I feel intimidated. I’ve changed a doctor recently because for three or four years I’ve been very intimidated, I kept persisting going back and then finally the last straw came and I said I am just not going back, so I searched and found a couple of doctors down here that were much more supportive.
Marion is happy to share most information but there’s not always time.
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Oh, look, I pretty well will discuss anything with my GP, I think. But not so much with the others. I mean, mostly because you just don’t get enough time, but also they’re often very good at just not going there.
Mick feels the person with severe asthma needs to be truthful and not hide anything.
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I’m pretty open with what I do. If he asks a question usually I’ll answer but I don’t lie to him about it. So there’s nothing I hide. I tell them everything what they want to know, yeah.
The dynamics of the relationship between healthcare provider and the person with severe asthma was important to some people in this study. They wanted to be seen as equal, at least in what they bring to the table.
Jemma wants healthcare providers to see people with asthma as clients rather than patients.
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I’d like them to talk to me as if I am an intelligent human being who could understand things that they’re doing and they’re saying if they put it into context of my understanding. So not making it simple language but making it understandable language without jargon. And I’d like them to talk to me as if I am the client not the patient. So they’re working for me. I think that’s a very different way to how they see it. So they’re doing the work for me. They wouldn’t have a job if I wasn’t sick. So that’s how I feel. So that we’re equal not they’ve got the professional hat on and I’ve got the patient hat on.
Justin believes people with asthma need to be held accountable.
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So, I think that we’re not quite equal but, by that I mean I know that he is, he’s gone through university and he’s educated and his knowledge is superior and it’s up-to-date. As in personalities, I feel very equal. I don’t feel threatened by him. I feel like if there’s something he doesn’t do right or if I don’t agree with, I’ll say and he’s also comfortable enough that he tells me I’m not doing my part of the bargain and I’m happy with that.
In terms of the actual information to be provided, participants appreciated the doctor being up front with their condition, that is explaining exactly what is going on and what to do. When the situation was explained clearly, some people with severe asthma said they are more likely to accept things and take their medication. However, some healthcare providers do not provide explanations, which participants found frustrating. Several participants spoke positively about their healthcare provider’s knowledge noting that they know their stuff, are proactive, and think outside the box.
Marea likes that her GP tells her exactly how things stand.
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I think it’s really important to have a really good GP and one that will tell you this is how it is, and this is what you have to do. Cause maybe, like lots of people, GPs get complacent too, especially when they are seeing you all the time like “how are you?” Yea I am great, when you might have been wheezing all night. So I think it’s really important to have a really good GP and to have good communication with your GP and to get into a really good specialist if you need to be with one and to take your regular medications- that’s really important.
Marion believes healthcare providers do need to educate patients.
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Well I think it would be good to make sure that people have a good understanding of how the disease actually works, how it affects your body. And in that way, how the medications can help you. Because I think if people understand that, they’re more likely to use the medications. And if they understand the importance of prevention, and you know, persistent medication to reduce the prospects of long term lung function decline, that sort of stuff.
Asthma treatment adherence and outcomes are known to be improved when the healthcare provider and patient share information, discuss preferences for asthma treatment, consider the options, and both agree on the treatment to use. Participants in our study had different takes on this. Some found it empowering, others preferred to leave the decision to the healthcare provider. A common theme was that the healthcare provider is the expert on the condition of severe asthma, but the patient is the expert on living with the condition, and the healthcare providers need to put themselves in the patient’s shoes. It was important to participants that healthcare providers put individuals’ situation and needs first. Sometimes they feel they are viewed as a case from a medical text , which is not helpful to a good relationship with healthcare providers.
Jemma feels empowered to be given a choice regarding treatment.
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I think I know better as a patient. I know what I need and what I don’t need. And I’d rather discuss what I need and then we come to an amicable decision together than just be told what I need. Really goes for anything.
I’d like them to listen to me and then work out the best care plan for me with me. I’ve done that with my nurse, we did a care plan together and we decided the best way, how it would work. And I think I’d like that with all my healthcare professionals to actually listen to me. Don’t assume that I know everything about them, their medications, but give me a choice to go on one or the other and look at some of the side effects and positive things about the medications. So not just go here you go, this is the medication you’re going to be on, and not give me any idea as to what it does, why I should take it. I’d like to have them discuss with me rather than just diagnose and order. I think it’s very… it takes the power away from you if they just decide for themselves.
Marion feels it’s hard for patients to process information when sick.
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I used to work at the guardianship tribunal so I know what the law says about informed consent. And I know that often in medical practice that is not actually what happens. But I also know, when you’re sick and particularly when you’re alone, it’s often a lot to take on all that information and to try and process it and to weigh the risks and benefits and all that sort of stuff. I mean, for some people they just, they don’t want to know. They say, just make me well, you know. And so the doctors are often in a difficult position where they have to advise you of the risks and all this sort of stuff. And I know they have to do that, and most of them do.
Leanne sees a difference between textbooks and real life which needs to be acknowledged by healthcare providers.
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That’s one thing the medical profession need to learn I think in the hospitals is don’t be so, don’t be so sure of themselves without really checking, without knowing the patient first. Which is a big mistake they make every day. I see it. Some of the younger ones they treat like we know nothing. Then they treat the older ones like they’re too stupid to know anything. And I can’t get my head around where the nurses and the doctors kind of cut their common sense off I suppose. It’s like well we’re telling you this so this is how it is. No, you get that out of a textbook, that’s not how it works. Deal with the actual people who have got the problem or get the problem yourself and then come and talk those statistics at me. Because they’ll be different. All the time different.
People with severe asthma are likely to be managed by both primary care providers [such as GPs and pharmacists], as well as specialised severe asthma services where there may be a team of different healthcare providers. So it is important that the healthcare providers communicate and work with each other to best deliver care to severe asthma patients. [Reference: Severe asthma toolkit].
Participants in the study reported examples of successful communication, as well as lack of communication, between healthcare providers. Some talked about healthcare providers receiving reports but not actually talking to each other about the patient’s needs, others appreciated arrangements being made in the background. Some people we talked to suggested that different types of health providers should be on the same page with regard to information known about the patient, but input to the patient’s care with their own specific expertise.
Frank was pleased that the GP was already updated by the specialist.
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My specialist sends my GP a report so he’s always up to date with, and so does my ENT specialist. So my GP’s always up to date knowing what level I am. We really don’t discuss it because he already knows right.
Joel saw no handover between specialist and GP.
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I believe in more connection between the levels of the specialists to the GP. to the researchers. There needs to be more conferences or whatever needs to be done, to make the process so that everybody knows at every step that like, the patient is getting assistance and we’re all pushing in the one direction to get the cure. I feel like the specialists may know about it, but the connection between the specialists and the researchers has happened, but the connection between the specialist and the GP gets missed out.
Although people with severe asthma generally found pharmacists helpful, some participants had issues with pharmacists’ handling of conversations around supply of medications. Sometimes this was due to the person with asthma presenting at a pharmacy other than the usual one where they are known to the pharmacist.
Ian found questions asked by the pharmacist annoying.
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It can still be a little bit of a road block, and particularly going to interstate, when you go in to the chemist and say, oh I want one of these, and it’s 20 questions. Why do you want that for, and what are you doing? Have you got this, and have you got that? And it’s like, listen mate, I’ve forgotten more about asthma than what you know, just hand the stuff over. See this is money, you take that, and I take that.
Joel would like pharmacists to be more empathetic.
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The doctors are fine but some of the chemists you feel like “mate, seriously, what did you learn at Uni?” We’re not criminals. We’re not trying to stockpile the asthma medications. We know how to use them. We just need them when we need them. It’s not like it’s on a script to say in 30 days you get a new puffer.
