Part 3 - Claire’s view on healthcare
Autonomy is important. For Claire, it is crucial to be fully informed about her conditions so that she can make her own decisions on treatments.
“I stick to my options and go over everything with the doctor and then make my own choice, even if it's not the choice that my doctor would make. I mean, it took me a while to get on a pump. My doctor was pushing it for a long time, and then one day, it was a Friday afternoon. I just sort of [thought that] I need to do this now. And sometimes it takes people a while to that comfortable enough with a new idea to go forward. And I'm very lucky that most of the doctors that I have will give me the space to do that.”
She also told me that she has learned a lot from the procedures and thinks that it is essential for patients to feel comfortable about asking questions and that it would be more helpful if more doctors begin to provide some explanation while performing the procedures.
“So it's really interesting how we can learn from having the condition and just having whatever procedures go with it, I had a laser procedure on my foot. I didn't really understand why it works until I asked the person, ‘this is what I understand about laser procedures. Is that the way it works?’ And she's like, no, that's not the way it works. [...] Maybe the most important part is feeling comfortable enough to ask and understand that you should never feel especially about your own condition that you can’t ask questions. [...] I was 20 the first time anyone ever did [explain the procedure while performing it]. It was actually an emergency laser surgery for my eyes. I got a diagnosis, and I had surgery six days later in Boston. [...] I was just sitting there in the room and they always write notes. And he actually said, ‘Give me a minute, let me finish my notes, and then I will tell you what I'm writing.’ Nobody had ever done that for me before. It was like the first time I realized I get to know what that is; that's about me. And if he hadn’t done that, I'm not sure I would have known that. I don’t think that is the default. [...] I would like to think that more and more doctors are doing that, especially with the Internet, where people can look it up and get bad information easily.”
Healthcare professionals’ wording of speech is also crucial when communicating with patients.
“I'm a lot heavier than it's healthy for me right now. None of my doctors said, “Lose weight.” My doctor said, ‘What are you doing for your activity? How can we work consistently?’ because they know I know the negative parts. [...] And really avoid guilty inducing language. [...] I don't feel that communications and languages are taught enough in medical school to communicate properly with patients. That will get the best results. Not seen that happen in medical school, but it's good to change the curriculum. And I'm really glad to participate in the Georgetown stuff because down here, there aren't that many that do that. So it's important, if you have the opportunity, especially as a patient, [to] do it.”
There are things behind the symptoms that healthcare professionals need to keep in mind and notice in time.
“So one of the other things that my doctor talks about more than I do because he's a doctor, is the ability to read the whole room. There is a lot that contributes to the state of a patient. Any kind of stress will affect that disease, will make it worse because that is a factor that you cannot control. So let's say, for example, if there is a kid like I was, a teenager comes in, there's a parent there. You can't understand why labs are bad or blood sugars are all over the place until someone says, oh, yeah, the parents are going through a divorce. Huge stressor, huge and personal impact. And that kind of information needs to be factored in how the patient is treated because what the patient needs right now is stability. [...] If you don't have kids and you're just someone with this disease, you've just lost your job and, oh, my goodness, what's going to happen to your Heath insurance? Can you get your supply? All of these real-life stressors are part of treating the whole patient. You think you're just going into medicine, but you're going into a little bit of therapy training. And it's almost like a business development. Look at how people use their body language and what word they don't say in order to assess the whole situation around. It's really complex.”
“What changes do you want to see in the future health care system?”
“So I've been very lucky personally in that I've always been able to afford decent health insurance anyway. But as far as the whole system is concerned, and I can't speak to the Canadian system because you have a much more socialized people access kind of thing. My understanding is that the medical is provided by the country, but the drug plans have to go through private. Here, it's different. It's all employer-based for the most part and some government now, but it's still very expensive. And sometimes the people who are disadvantaged and need the most care are the ones who have the hardest time getting it through. This is for me, our affordability and accessibility. So working with communities to make sure that when they have members in that community, they can get to the right care. They don't have to worry that survival means that they're bankrupting their family. I mean, there really are people … I mean it's heartbreaking… There really are people who have to choose between food and prescription. Really go without either one of those things. And you should never be put in a situation where you have to choose.”
However, it is also very difficult to balance the cost of healthcare and the salaries of healthcare workers.
“One of the things that I know we're working on here. Is there's a shortage of family doctors and primary care physicians? Those people should be at the very center, and they should be getting all the information from all the specialists so that there is someone looking at the whole picture. Diabetes doctor looks at diabetes and probably the kidneys. The Orthopedist looks at the foot, and the pulmonologist for me looked at the asthma stuff, not necessarily all together. So if an issue comes up and nobody can figure it out, it's important to have a central doctor who's seeing all of it. But those doctors just aren't paid as much as the specialist. I don't know why. So there needs to be an equalizing of that here, too.”
“Was there a time when a doctor couldn't answer questions? And how do you feel or deal with that?”
“There have been a couple of times that I've brought specific studies that they haven't seen, so they can't really answer my questions about it. So usually what happens is they make a note, they look into it and they get back to me. [...] I did have a very negative drug reaction once and we could figure out what was going on. I actually took my psychiatrist to figure it out to say, oh, this happens in 0.3 of 1% of people who take this drug. So I guess the lesson there is just keep asking whoever you have access to an answer.”
She agrees that patients also need to take part in their own healthcare.
“Sure. [...] Actually, we also have to accept our role in our own care. Like for chronic and autoimmune, there's always some measure of control, right? You have to accept what the treatment is and you choose a path and then stick to it. And if you don't stick to it, then be honest about it and continue to work with the doctor to figure out what our goals are. And goals are interesting. Most neither doctors nor patients will speak about what are the goals for treatment, right? What are the goals for this disease? You want to get with a range on your labs? You want to live a kind of life? like there are Olympic athletes now with type one diabetes. I didn't really have that when I was growing up because it's such an exercise effect, the blood sugars so much will drop them so far, that wasn't really encouraged. But if you're a type one diabetic now and you want to be an Olympic athlete, that's not out of the question, but you are willing to bring it up with your provider and say what is it going to take. And the doctor has to be willing to have goals from the patient that might not match their own. So understanding your role as a patient and being willing to be assertive. A doctor-patient relationship is just as much a personality match. Like my doctors who do this thing with me, where they treat me as an equal, it might not fit for everybody. Understand that it's an effort to find the right person and also not just accept. I feel like it's the right fit. If you need to go to a different doctor, that might be a better fit. Doctors shouldn't take that personally. But patients also need to understand that is working. Then they need to find someone who does with. I always thought, how many contractors do you hire or do you interview before you hire one to redo your bathroom, right? If you can take the time to do that and call around to references and sort of really check out that person for this moderately expensive but short-term projects with a doctor who could be the difference in your life. Going to take a shift not just in the doctor's brain, but also in the patient's brain.”
“Paternalism” can be applied to the field of medicine and raises the issue of equality. Patients should take on more active roles in their own care as doctors should ask more about their patients’ expectations for their relationship.
“Paternalism is where the doctors are there to take care of you. They make all of the decisions and they tell you what to do so that it can be easier for the patient. But it's kind of a matter of equality on a lot of levels. [...] We do feel that it’s the doctor's job to do that in a lot of ways. And I'm taking a path that isn't like that. And there are a lot of people who are experienced patients like me who are on different paths. But the way the health care system is still constructed, so false in that general construct. So the fact that the UK doctors are asking specifically, what are the patients’ expectations? I bet you $5 that most of those patients have never been asked [that]. And the answer to that question is, whatever comes into your head, what do you expect from this relationship? Because it is a relationship. And what do you expect to get out of it? And what are your end goals? And with open-ended illnesses don't have end goals other than survival? If that is your end goal, then surviving for the longest time possible is a perfectly acceptable answer. But it's going to take a while for us to get there."
Comments