The following is a transcription of an interview between Lisa Young of Equal Access in Science and Medicine and Dr. Marlís González Fernández of Johns Hopkins Medicine
LY: You joined the [Physical Medicine & Rehabilitation] Department as a faculty member in 2004 and have been here for 18 years. Why did you choose Johns Hopkins PM&R in the first place?
MG: [I felt like] research would allow me to reach many more patients by answering important questions that would improve their care versus using the knowledge we already have to serve them. I felt like I wanted to be a part of both sides of that process. Thus, I decided to come to Hopkins for research training and have remained in the faculty since.
LY: Do you define yourself as a scientist-clinician or as a clinician-scientist?
MG: Clinician scientist, in that order.
LY: Why did you choose to work with patients with swallowing disorders, amputations, and spasticity?
MG: What attracted me to physiatry initially was its primary focus on the quality of life and ameliorating the effects of disease on people’s daily lives… Swallowing disorders, in particular, are seldom paid much attention to. And it’s something that we tend to take for granted. We swallow 500-700 times a day but don’t give it any thought unless there is a problem. Swallowing problems are not only crucial for nutrition and hydration but also for day-to-day social interactions. Being unable to swallow as usual has a significant impact on an individual’s quality of life… We don’t invite friends to talk; we invite friends for coffee or invite people to our home to have a meal… The fact is that there’s this correlation between how we interact with each other, quality of life, and food and drink, which is almost universal. That’s why I thought it was essential to start looking at that from that lens. I wanted to focus on swallowing to get people back to eating, to family functions, to the coffee shop meeting with an old friend, and to be able to give a toast at their children’s wedding.
The same applies to my focus on rehabilitation after limb loss. People come to us at one of the lowest points in their life. They’re discouraged. They think that life is never going to be the same. They feel they will never be able to do the things they did before. Though it’s true that life will be different, that does not mean that they won’t return to a meaningful way of life. Options exist like using a device like a prosthesis or us as clinicians helping people go through that process, acknowledge their loss, and help them grieve it. And at the same time, helping them move forward and get their life back is essential. Again, at the core, whether it’s dysphagia, amputee rehabilitation, or any other rehab problem, for that matter, the goal is to ameliorate the effects of disease on life and reduce disability. You can change the physical problem, and where you can change how that physical problem affects their participation in society. That’s important because we have many things we can do there, even if whatever happened to them, from a medical standpoint, cannot be fixed at this point in our history. That is what is most rewarding of all the work we do.
LY: Would you describe your work as not only reducing disability but also teaching patients how to live with it and changing how they interact with society?
MG: There’s a typical definition of disability. But suppose you go back to the meaning of it. In that case, so people do not have an ability, you can argue that there are people, for example, out there who have lost a limb or have an impairment, and their limb will never return. Still, they don’t have a disability because there’s no thing or activity that they want to do that they can’t do. In that sense, it doesn’t matter what your impairment is; it doesn’t matter if you don’t have a limb; it doesn’t matter if you have a spinal cord injury if you can’t walk; what tends to matter at that point more is how can we help you do what you need to do and eliminate that lack of ability? It’s a bit of a broader definition of how we use disability in typical terms.
LY: What were some challenges you faced in developing your understanding of how to care for patients with amputations, swallowing disorders, and spasticity?
MG: That’s the toughest question, not because of a lack of challenges. I would say the most important lesson I learned when caring for people with disabilities is that you first need to understand their perspective and where they’re coming from… Medicine, in general, has changed because we are not physicians who just tell people what to do– we need to make sure that we develop a partnership… It is really important to learn to work with patients with disabilities, understand their personal goals, and facilitate their recovery… and they, especially in rehab, are the ones that have to do the tough work. I always tell patients that rehab never goes as fast as we want, and it never feels like it’s going quite as far as we want. As long as we’re going in the right direction, that’s all that matters. Are we moving towards our achieving the goals that we set up at the beginning? And are those goals changing and improving and growing? The biggest challenge in rehab, in general, is that the timeframes are never good enough for anyone involved, especially for the patients because they’re the ones living with whatever physical challenge they have. Keeping people encouraged is vital as ensuring they see the goal at the end, even when the progress is slower than anyone would want.
My advice to them is: do the best work you can but don’t be discouraged if the amount of work you’re putting in is not translating into what you think is the end game. The game might not match the effort you have to put in, which is okay. It’s tough to see the change when you’re at it all the time. Sometimes it’s easier for me than for patients to see the improvement because I don’t see them every day. I saw them two months ago, and they come in saying this prosthesis is hard to put on or it makes their limb perspire. We work on getting it to fit more comfortably. We work on controlling perspiration and all that, but at the end, I always like to stop and say, “But when you came here the first time, you were in a wheelchair; you walked in the door today,” just to help them refocus that they don’t need to use a wheelchair for mobility, they can use the prosthesis. It’s sometimes just important to stop for a minute and help people refocus and take a broader view. And say, “Yes, the challenges you’re facing today are important, but if you take a step back, you can see that your challenges have changed because you’re better. You have problems because the prosthesis is not quite right. Because you’re actually using it, you’re actually walking on it.” Those are important things to facilitate so people can feel encouraged by their progress. Because, as I said, I’m not doing the hard work.
LY: And has that been personally challenging for you?
MG: Yeah, in general, like learning to navigate PM&R, I think this field was right for me. Some of these things feel natural to do. I think, over time, getting a better grasp on how people on the other side feel is the most challenging. Because I would never be able to tell a patient, I know how you feel because I’ve never been in their shoes. But that process of trying to get as close as you can to where they are, and be able to understand to a certain level, why they are, where they are, and how they feel is important, and it’s something that you hone with time. You would hope that you wouldn’t be horrible at it to start. But honing that ability is critical, especially when serving people who need long-term rehabilitation.
LY: Is there a PM&R initiative or intervention that you are excited about but hasn’t yet gained nationwide recognition?
MG: I think this field is always exciting. But I’m most excited about a couple of things.
…I hope that in the near future we can increase the number of patients with upper limb amputations that we can serve. For rehabilitation after limb loss, we’ve always felt that patients are served best when they can get access to all the treatments available… I’m very excited about our programs growing and offering people who’ve lost a limb pretty much everything that’s out there and offering all that in one place so they can have surgical interventions, traditional interventions, and everything in between… And being able to tailor the intervention to their specific needs and helping them reach their full potential is a very difficult process to manage and can be overwhelming for patients. When we have everything in one place, we can facilitate that progress.
From a research standpoint, I’m excited about potentially restarting some of the research that had stopped due to COVID. Using CT scans for swallowing hasn’t been done much, and hardly ever in the U.S., because for studying swallowing, you need a special CT scanner that will tilt and has a unique chair so that person can sit instead of lying down because we don’t eat laying down… I’m very excited about potentially starting now that we have the infrastructure and the expertise of some colleagues in Japan. I’m very happy about being able to reopen the lab and be able to do some of that work here.
LY: Can you talk a bit about the customizability of prosthetics?
MG:…Especially hand prostheses, the more realistic they look, the less they can do from a functional standpoint. So we’re always trying to balance that… That might be important for one patient. For others, they’d rather have something that perhaps doesn’t look as much like a hand but helps them do more activities and is an important tool in their day-to-day life. And again, that’s different for every person. That’s why focusing on and understanding their personal goals is important at the beginning so we can do what’s best for them.
One of the things that I’ve learned from working with people with disabilities is that this is a really amazing group of people. Some of them are way stronger than I would ever be. They’re facing some physical challenges that they didn’t choose. It just happened. And they take it all with grace, move on, keep living life, and recognize that strength is important. And recognizing that people want to be seen for who they are and not solely for their disability, but also not trying to hide the disability like it doesn’t exist and trying to help people find that measured approach. Well, the fact that they lost a limb is the fact that it is what it is. It doesn’t need to be hidden, but it doesn’t need to be the primary focus because they’re a person first, and they’re a person that has all sorts of dimensions. That’s why I always turn to the patient first because we need to understand how the disability has become part of their life. How it is real for them, but at the same time, it’s not the totality of who they are. Where it is meaningful to that particular person is important, and it’s the biggest challenge for society.
I think as we try to fit people into specific categories, and when you don’t fit the categories in society, then things start falling apart, and people feel uncomfortable. People will say, “Well, I have a disability; my leg is not growing back,” and I’m like, “Okay, but we can see what things you want to do.” Then we can eliminate your lack of ability to perform activities. And to be quite honest, I’ve learned a lot from the patients themselves. I’ve learned a lot from their families and how they’ve, especially families who have and who, for example, have had a child who has a disability, especially a disability from birth. They have navigated this world that is not kind to children with physical or cognitive issues, and how they’ve managed to work with the child as it grows. And I’ve seen them as adults. And you see how people are just amazing and pushing them enough that they realize their full potential but understand where their limitations are and trying to help them navigate those disabilities. You can see when people have that sense of what is important, and how they can foster the best of what they are regardless of what that is. You see incredible things happen.
It’s all about finding the balance: understanding the medical versus the rehab world, understanding what is possible in terms of abilities, and trying to push the envelope versus knowing when to stop.
LY: With all your years of training behind you, do you have any advice for graduate and medical students as they work with individuals with disabilities, physical, neurological, and invisible?
MG: This is an important question, and I think the most important thing we can do is not assume anything about how happy, fulfilled, and engaged your patients are in life. Again, you can make many assumptions based on what you read about someone’s medical issues and realize that there’s a great disparity between what you think you know from a medical standpoint and who that patient is and what’s important to them. So do not have preconceptions when talking with someone, regardless of how long you’ve worked with people with a particular disability. I’ve worked with people with amputations for at least ten years and through residency training, but everyone is different. And how happy or not people are with how things are going– you just can’t assume anything without explicitly seeking that information for each individual. And sometimes you’re surprised about what people are doing and want to do well. And sometimes we’re cheerleaders; sometimes we’re encouraging them. Sometimes we have the tough job of telling them that perhaps we need to right-size those goals for the now and then help those grow as we move along. Oh, those are hard because we want to support people as far as they can go. But we don’t want too lofty goals to impede progress now. I always say let’s call that our ultimate goal. Let’s find smaller goals we can reach in the process and move forward.
…So I don’t make assumptions at all at this point on anything a patient may or may not want until they tell me what they want so we can be good partners and understand what the goal post is. Asking what their goals and interests are is crucial to be able to serve them well. It is amazing how resilient and creative my patients are and how they rise above their disabilities and challenges to live meaningful lives.