Expressing the Patient's Experience in Wound Care

Caroline E. Fife, MD: Brian, I've had a really fabulous time at this meeting and a lot of it was because the sessions were great, but maybe because I've done a better job just talking to strangers, just not always easy. I have been completely inspired by the people that I've met in the hallway who are doing amazing things, in some cases under very difficult circumstances.
 
And the thing that's made me realize is that our vision of wound care, which is mostly in the hospital-based outpatient department or mostly in the doctor's office or even in the nursing home, that is way too small. The things that are, people are evolving practices to get to patients where they need to be seen, even if that's in the home. We have clinicians that are focused on the homeless population.
 
There are so many stories that everybody needs to hear that I'm inspired by, I'm humbled. There are a lot of folks who need to be writing articles for Today's Wound Clinic.
 
Brian McCurdy: Yes, there are.
 
Dr. Fife: And the message that I have been giving, and these are extraordinary people and I'll say, you must write an article about what you do. And they're like, who me? It's like, yes, what you do is amazing. We want to know what your practice looks like, how you're solving problems, how you're taking care of the hardest to take care of patients, how you have found these solutions. We need to know that.
 
McCurdy: We do. And there's a whole class almost of underserved people that we need to hear about your treatment of those people. The people you might not think about, people who might get almost lost in the cracks, we need to hear about how you treat those—how you solve those problems. Yes, and to hear from the patients would also be great for the Patient Experience department that we're doing now.
 
If you have an interesting patient who's really sort of been through the works in wound care, let us know. We can interview them. We can talk on a podcast or a video like we did with Morgan McCoy.
 
Dr. Fife: Yeah, Morgan. You and I interviewed Morgan and it was a wonderful experience. My feeling is that there's two parts to any disaster in your life. The thing that happens and then there's what you do with it. And sometimes allowing patients to say, this is what I'm going to do with this amputation. This is what I'm going to do with this catastrophe in my life.
 
So I can't wait for people to hear the podcast with Morgan McCoy who's written for Today's Wound Clinic. She's in her 20s and she's had to finish college and get a master's degree and go on to the work world with horrific ongoing problems. And yet her attitude is so positive that she has so much to tell other clinicians about the experience of having a wound, about the challenges of interacting in the world when you have this problem, that she's a wonderful representative for ...
 
Because so many of our patients are voiceless. There are just many patients who can't speak for themselves so we need the ones who can to do that job. And we know there's some really fascinating patients out there and that they would be able to help gather a community of activists who can help us approach Congress, who can help us approach the FDA, who can help us explain that the way things are working is not working very well.
 
McCurdy: The one thing that struck me about Morgan is when she mentioned something like the PTSD she went through. I would never have thought of that and I wonder if not a lot of clinicians think about that. It made perfect sense when she said it, but it's something you might not remember. 
 
Dr. Fife: Exactly. Even though, because my father suffered from that, you would think that that would be something I would understand, but the idea that you have patients who have PTSD from their time in the NICU, from the traumatic experience that happened to them that brought them to  the Wound Center and they're trying to cope with that and it's layered into some of the reactions they have.
 
And it never crossed my mind that some of the things she was struggling with when she would come in was PTSD. And then once I realized, oh, of course, that makes perfect sense and then we can talk about it and figure out how to minimize the triggers that are so upsetting. So I think that's a powerful story. And it just makes me realize how many of those things that seem obvious now do I miss? Because patients either didn't feel that maybe they were embarrassed.
 
In fact, one of the things she brought up, which I have heard before, when patients heal, they're kind of afraid to go out in life without addressing. They actually feel kind of naked and it takes a while to wean themselves off of having a dressing because they can't imagine a world in which they don't have one.
 
So there's all these really interesting things that we need to be sensitive to and we completely miss them and the patients can tell us so much more than that about how our services can be better organized, more accessible, how we can do a better job of considering their health care dollar.
 
That's another thing—out of pocket expenses have changed so dramatically. One of the sessions that I know Dot Weir did is when we care on a dime, I've heard so many comments about how helpful that was. It's a weird reality that we have all these incredibly expensive, fantastic products that are so high-tech and then in some cases we're struggling to get a very simple dressing for a patient or a cleanser that they can afford.
 
So there's a very weird dichotomy that goes on where we struggle with basic things. I don't have a solution for that except that there are some people who've thought through it and have some advice to try to help us through those passageways where the insurance is supposed to cover something and then they don't.
 
That's a real challenge. There's a lot of advocacy to be done at the Alliance of Wound Care Stakeholders meeting yesterday. We were talking to the Medicare Advantage folks from CMS trying to explain that these programs are not covering what Medicare says they're supposed to cover and these patients are falling through the gaps. And there are advocacy routes for us if we could just get our collective act together. So there's a lot of homework for us from that standpoint. Yeah, so hopefully. But it's been a fantastic meeting and I want to send out a plea.
 
I know that there are lots of people out there who are doing things the rest of us should know about. And I just want to thank you for how easy you make it because if people don't feel like they can write, we'll just get on a Zoom and they don't have to turn their camera on. We can just talk about the things that are going on. It's so simple. Just find half an hour to talk to either you or me or both of us. And then the other thing I've been doing is sending interview questions. Just respond to the questions that we've been creating to try to understand people's environment and what drives them. And it's very easy in which you do a beautiful job of editing. So that's the other thing is people think, oh, it has to be perfect. It doesn't have to be perfect. Just get it on paper and we'll fix it.
 
McCurdy: It doesn't have to be eloquent, but it does have to be honest.