Patients with chronic illnesses want what any patient seeking health care wants: to improve their health without exhaustive treatment. Unlike the majority, however, these patients face specific barriers to achieving that care.
Patients with chronic illnesses want what any patient seeking health care wants: to improve their health without exhaustive treatment. Unlike the majority, however, these patients face specific barriers to achieving that care.
Betsy Taylor, editor of Health Progress, and Tricia Steele, author of the Sick Person Guide e-book series, join Health Calls to discuss Steele’s recent article for Health Progress. Steele discusses her experiences as a patient advocate and ways that health care delivery isn’t equipped to meet specific patients’ needs and proposes steps that health systems can take to better care for those with chronic illnesses.
"What Patients With Chronic Illness Want Providers to Know"
(Health Progress, Summer 2023)
Brian Reardon (00:00):
Hey Betsy. Good to see you again.
Betsy Taylor (00:01):
Hey, Brian, how's your morning going?
Brian Reardon (00:04):
It's plugging along. So here we are again, another topic from the latest issue of Health Progress, which is about access to care. And this is an article that I think I know I'm excited to talk to the author about because we found it was really powerful. So you ready to get going?
Betsy Taylor (00:21):
That sounds great.
Brian Reardon (00:27):
This is Health Calls, the podcast of the Catholic Health Association of the United States. I'm your host, Brian Reardon. With me is Betsy Taylor. She's editor of Health Progress with CHA. And then in just a moment, we're going to bring in, as I mentioned, the author of what Patients with Chronic Illness Want Providers to know, and that again appears in the latest issue of health progress. Her name is Tricia Steele. She's also the author of a Sick Person Guide ebook series. So we're going to bring Tricia in just a moment. But Betsy, I want to start with you. And really the perspective of patients is not something we always hear in the pages of health progress. We hear from a lot of caregivers, we hear from mission leaders, we hear from ethicists. So how important is it to bring in that voice of the patient into some of the articles that we print?
Betsy Taylor (01:13):
Yeah, I think anyone at CHA would say certainly patients have to be at the center of all the work we do because of our readership. As you mentioned, we are more focused sometimes on things that can help the care providers so that they can help the patients. But it is pretty powerful when we hear directly from not just interviews with patients, but from the patient's point of view about what health care experiences can be like for them. I think it's just a helpful reminder to people that sometimes what's going on in the exam room, there's a lot more going on for people beside that.
Brian Reardon (01:49):
And this article comes from, as I mentioned, the access to care issue. How does Tricia's voice contribute to that theme?
Betsy Taylor (01:56):
I think one thing we tried to focus on when putting this issue together was the many different types of barriers that arise when there are access issues for patients. And certainly not all of those are just physical. The difficulties of actually getting to the doctor's office or financial, I want to see someone, but how am I going to pay these bills? Tricia's article for me really points out that there are systemic barriers. Those can be things like just a patient feeling, am I worthy of the doctor's time? They can't figure out what's going on, what do I do with that information so that communication issues arise, knowledge issues arise, and I think so it's a little more amorphous, but when it comes to access to care, so many of the human interactions really benefit when people think about those relationships, the care provider, patient relationship, and improving things of that nature.
Brian Reardon (02:56):
And that's at the core of what we're all about in Catholic health care now. Thanks for that perspective, Betsy. So let's bring in Tricia. Now, Tricia Steele again, she's author of Sick Person Guide the ebook series. She's also the author of the article that we want to talk about, and that's what patients with Chronic Illness Want providers to know. Welcome, Tricia. Good to have you on the podcast.
Tricia Steele (03:15):
Hi there. Thanks so much for inviting me. Glad to be here.
Brian Reardon (03:18):
So I think we all agree, everybody who's read the article, very powerful, and again, you write from the perspective of someone who is chronically ill. And so I guess to start off with, share a little bit about how your own personal experience, again, those interactions that Betsy just touched on, really inform this article and talk a little bit about your ebook series, if you would.
Tricia Steele (03:39):
Sure. So it's a little intimidating to try to be the one patient that represents all of the millions of patients with chronic illness, but I'll try. My story is a lot like many others, especially women, I went to the doctor for nearly a decade, multiple doctors trying to tell them that something was wrong and that I was getting sicker. And I kept being told that according to the labs they did, everything was normal. And so I was very desperate. I finally found a care provider who believed me, like I said, about a decade in to a range of symptoms and experiences that were interrupting my life. They were interrupting school, they were interrupting work. And when this provider who happened for me to be a nurse practitioner finally listened and took my timeline and told me, I believe you and we're going to look for what's wrong, and if we don't find it, we're going to keep looking.
(04:44):
And that really was the key that unlocked a lot of answers for me. And as it turned out, I had full-blown autoimmune illness that was far progressed, and in the end, the fix was very tiny in terms of the medications that I needed to take, and it really changed my life. At the same time, I was dealing with what we know at least one in 10 women deal with, which was advancing and progressing endometriosis. I was told all of the things that women who deal with this issue are oftentimes wrongly told like go get pregnant. 21-year-old single college student as an actual prescription from an actual medical doctor.
(05:34):
And so I had to fight to get to the right experts, had multiple excision surgeries. And all of that led to a time in my life where even though I thought I was managing all of these conditions really well, I ended up with my first documented lung collapse and the start of many, many chest tubes. And when I went in to the hospital that first time, once I knew what was happening, I told my cardiothoracic surgeon, this has happened dozens of times, I have felt this before. And he did not believe me. And so by the time we got to the second thoracic surgery that I had to have, he was finally very open and I functioned much like a research assistant bringing the say 35 case studies. There was at the time for this hormonally related lung collapse, and we were working together as partners to think about what interventions he needed to take in that second lung surgery.
(06:45):
Eventually after we got that stabilized, I started getting some other opinions and we eventually, I had a provider look at a past MRI and discover that even though they were looking for something else, I had an undocumented lung collapse on that MRI. So over and over and over again, what I experienced was that though I was disbelieved and dismissed by some that actually I was right about there being something wrong about what I was experiencing in my body. And that combined with my work life, my professional life where I was consulting for health care providers and technology, it really changed the entire way that I started to approach health care. And since then I've started support groups and we have over a thousand women in just the one group related to the catamenial pneumothorax or hormonally related lung collapses. And we're constantly coaching women through how to advocate for themselves and get the care that they need.
Brian Reardon (07:50):
And you mentioned you're one voice of many, and in your article you cite this statistic, which I thought was pretty incredible, but more than half of the US population has at least one chronic disease and more than a third have multiple chronic conditions. And another point you make, which again, I think is really worth touching on, is that chronic disease requires a fundamentally different kind of medical practice than acute care. So I guess my question is, because of that focus on acute care episodic, do you think that's maybe a barrier just in our overall health system in addressing folks with chronic illnesses?
Tricia Steele (08:28):
Absolutely. I think that the research shows this over and over again that chronic illness is fundamentally something that has to be either prevented or managed on an ongoing basis over a long period of time. And neither of those things is the current health care system really great in a methodical, reliable way. And a lot of those problems, there's a whole bevy of reasons for those problems, right? The fee-for-service model, lack of universal health care, the way doctors are paid primary care at last I read was the least reimbursed, even though really it sits at the center of ensuring that people either do not develop chronic illness if it can be prevented or have the ongoing support and resources that are needed to prevent emergencies. So yes, I do think there are wild large systemic issues that lead to this problem. health care is really great at saving lives in an acute emergency situation, and I don't want to discount that. That's very important, very important, but less built around the idea of having that total picture of the patient right at your fingertips and being able to coordinate care across multiple different providers and then have someone who's following and supporting that person, recognizing that the patient is the one providing the majority of the day-to-day care for themselves that impact the way their disease might progress or not.
Brian Reardon (10:28):
And I think the reason your article really touched us and we think is so powerful because you really provide a great overview of why it's so important for a patient to be their number one advocate and really have a strong voice. And so I guess let's start with kind of the positive for caregivers. What should they do? What should they be looking for? What are some simple steps they can take to bring forth someone who's chronically ill, their voice and their expertise in helping manage their care?
Tricia Steele (10:58):
Sure. That's a great question because of course it can feel rather hopeless if we only focus on the big systemic changes that will take a lot of time and a lot of energy and effort. I would say that at the most basic level right now today, any provider or clinician of any type from the most expert surgeon to a nurse, to a medical assistant, if the moment before you walk in that door or pull that curtain back, if they just take three deep breaths and remind themselves that they are showing up as the expert consultant on someone else's life, and that person, no matter the state they're in, no matter their intelligence or capability level, that person holds the information that they need and is the one left with the results of all of the providers advice and decisions, just reminding themselves of that reality every time they engage with a patient.
(12:12):
I think that that at a very basic human level makes a fundamental difference because while patients may have different intelligence levels or functional levels, everyone knows when they are valued, they know what it feels like for someone else to value them. And I think that really has to be the center. And then if we really believe that, then we might put in other types of supports around patients in terms of getting them the coaching and the education that they need to manage their conditions, not prescribing medications without thinking about the long-term impact, et cetera. But yeah, I think at a most basic level, remembering who's in charge of their body right before delivering any sorts of medical services, I think that that alone can make a real difference in the way that providers and patients interact.
Brian Reardon (13:09):
You also write in the article that low and slow is the key for chronic illness patients. Can you talk a little bit more about that and how does that relate to what you just spoke to related to caregivers being present in the moment and taking that pause before they have that patient encounter?
Tricia Steele (13:26):
So that was a quote from Jaime Seltzer, who is a phenomenal researcher and advocate. She works out of Stanford and leads a very active patient advocacy group, and she has done a lot of research on what works and what gets in the way. And for chronic patients, of course, that includes a wide variety of folks. So of course there's a huge range, but in general, if you prescribe medication to somebody with a chronic illness, unless it is for a very acute problem like an infection that then can be overcome with antibiotics, that's something they could potentially be on for the rest of their lives. And so again, the system makes it very challenging for providers to interact with patients on an ongoing basis outside of those 15 to 20 minute interactions. But she has found over and over again that starting lower on dose and going slower with titration or changes can make a big difference in the effectiveness of a particular course of treatment. So that was definitely Jaime's expertise that I was able to pull in when writing this piece.
Brian Reardon (14:57):
And you also write about how a lot of times physicians really are in the job of curing people, and so it may be frustrating if progress isn't made. Is that one of the common mistakes that you think happens in caring for chronically ill patients?
Tricia Steele (15:13):
Yeah, it's an irony, isn't it? I know that providers by and large get into this field because they want to help people. Why else would they endure such torture as medical school and residency and these long hours and huge student loans and having to fight with EMR systems for hours every day instead of being able to be with patients. There's a lot of burden that providers have that I wish they did not. So yes, I absolutely believe that providers, clinicians, they want people to get better, but I do think that sometimes the performance of the patient's health can get conflated with the performance of the provider's skill, and there can be ego that gets involved and a desire to be done, to have fixed something, to have resolved something. And the challenge with chronic care is that in many cases, there will not be resolution.
(16:20):
There will be successful management that reduces emergencies and allows that person to function at the level they want to be able to function. But I do think that it is a mindset that providers who interact with chronically ill patients have to sort of adjust and realize that not knowing and answer or something not turning out the way they hoped is not an indictment on their own skills or knowledge. It's a function of the disease process itself and the realities of the world we live in. And so, yeah, I do think separating those very worthy goals of wanting to help people get better from what better looks like in a chronically ill patient is really important.
Brian Reardon (17:07):
And before I bring Betsy in, I do have one other question and that relates to palliative care at CHA. We are strong advocates for that, both at a legislative and policy thing and also just encouraging that as part of the care that we offer to our patients. Is palliative care something that maybe is overlooked? Do you think there could be more palliative care, I guess, when it comes to caring for those with chronic diseases?
Tricia Steele (17:29):
Well, we run right into the reality in the world that there are certain groups of people who are not believed when they share that they're suffering. So we know that women, we know that people of color, minorities are oftentimes not treated with the same level of pain management or of relief care as other groups of people like white males. And unfortunately, that is just a reality that we have to combat and make sure we stay mindful of. But in terms of pain management, I just read the other day that there's this great show about these women who were telling a doctor while they were receiving an invasive procedure that the pain medicine wasn't working and they were not believed. And then it turned out that in that case, unfortunately, one of the nurses was siphoning the pain medication. So they were in fact enduring those surgeries without any sort of pain medicine. That's a very specific and exaggerated example, but believing people when they say something isn't working or I'm in pain and I cannot function, I need help in order to be able to have some kind of quality of life. I do think that there is a stigma that is around that request that does take a shift to be able to believe patients when they acknowledge that they need relief.
Brian Reardon (19:03):
Betsy, any final thoughts? Questions for Tricia?
Betsy Taylor (19:06):
I think one thing I really liked about this article was that because it's coming from the perspective of patients, it's not telling providers. I mean, we know providers have years of expertise. No one's saying, here's how you should do your job. But just keeping in mind that the patient experience is very different from the provider experience in these interactions. And the other thing that strikes me out of the conversation is that sometimes when someone has a chronic illness, they don't really understand the progression of a chronic illness and the way that a care provider is trained to. So when you're first getting diagnoses and getting treatments, I know a good number of people who are sort of startled, what do you mean I'm going to have this side effect for the rest of my days? Or I thought I was going to be on this medication for three weeks, and the care provider may know it's a much longer trajectory to the illness.
(20:01):
But I think just the episodic nature of some of our health care interactions doesn't necessarily dovetail beautifully with chronic illness and sort of the ups and downs that some of these conditions involve. And again, that's just speaking from the perspective of a lay person. And I do want to validate what Tricia's saying because I think so many people in talking to other people that they know have heard stories like this have heard someone say, boy, they don't know what's going on. And I've been to see everybody, and I'm starting to make me feel like it's all in my head. And that can be a very frustrating experience for people. So again, I just really think this is a nice look at what the patient experiences in some of these interactions. So Tricia, I that point of view,
Tricia Steele (20:48):
Thank you so much, and I feel like you've summarized it very well. I would just add, like you said, health care providers, it's very obvious that their job is to treat patients. And so they're given the education, the job training, the experience that they need in order to deliver those services. If we took seriously that a patient, once they develop a chronic illness, they have a new job, their job is to care for their body, and they need the education, the training, the coaching, the systems of support that we would give any professional in order to do their job well, and if they do their job well, then it actually relieves the provider. It makes their job a little easier, and it reduces costs and burden in all kinds of ways. So if we took seriously that a patient is given a new job when they get a diagnosis, then we would structure our systems and our approach to support them in this new job that they did not ask for. Right?
Brian Reardon (22:03):
Great perspective. Tricia Steele, author of the Sick Person Guide ebook series. She's also the author of What Patients With Chronic Illness Want Providers to Know. That article, again is in the Summer Issue of Health Progress. The theme is Access to Care. Tricia, thanks so much for joining us and again, for being that voice of millions that suffer from chronic illness, and I think providing some very practical tips and insights in how those patients can raise their voice, be more involved with their care. So thank you so much.
Tricia Steele (22:35):
Absolutely. Thanks for having me.
Betsy Taylor (22:37):
I also just want to mention our next issue is on improving the patient experience. So if readers enjoyed this article and this conversation, there's a lot more of it coming in the fall.
Brian Reardon (22:47):
For Betsy Taylor, I'm Brian Reardon, the host of Health Calls, the podcast of the Catholic Health Association of the United States. As always, you can download and listen to Health Calls on your favorite podcast apps, and of course, at the CHA website, chausa.org. Health Calls is produced by Josh Matejka. Our engineer is Brian Hartmann at Clayton Studios. As always, thanks for listening.