Brad W. Butcher, MD, Director and founder, Critical Illness Recovery Center and Director, Medical Surgical Intensive Care Unit at UPMC Mercy Hospital talks about post intensive care syndrome and how his Critical Illness Recovery Center can help.
Interview conducted by Ivanhoe Broadcast News February 2019.
I have never heard of the term post ICU Syndrome. Can you tell me what that is and what it entails?
BRAD BUTCHER: You’re not the only person who has not heard of the Post Intensive Care Syndrome. Many people and many physicians aren’t even sure what it is. We define it as the constellation of physical, functional, cognitive, psychiatric, and social disabilities that can arise or worsen following a prolonged critical illness and which can persist for months to years after the index illness.
What are some of the things that patients could be feeling? What kind of symptoms or how do you know that it’s a syndrome or PTSD?
BRAD BUTCHER: It can be a number of things. Physically, patients may notice that they have deficits in strength, endurance, and balance. This may be manifested by the inability to button a shirt, for example, because of loss of fine motor coordination, or the inability to prepare a meal because they lack the endurance to do so. Cognitively, they may find that they have difficulty remembering things that they could easily remember in the past or they may have difficulty concentrating or paying attention to something. Psychologically, they may feel anxiety, depression, or even symptoms of post-traumatic stress disorder.
But after ICU your body gets better, you get treated, and you get released. What’s going on with the patient? They just aren’t able to get back up?
BRAD BUTCHER: Excellent question. We don’t yet know all the factors that put people at risk for developing the Post Intensive Care Syndrome. A prolonged stay in the intensive care unit can certainly put people at risk, in addition to respiratory failure that requires mechanical ventilation, sepsis, and the development of delirium during the intensive care unit stay.
What percentage of people or how many Americans who are in ICU go on to develop these kind of symptoms per year?
BRAD BUTCHER: That’s a really difficult question to answer. With advances in technology and the delivery of critical care, a lot of people are now surviving critical illness that may not have survived 10 or 20 years ago, so we now have a much larger population of patients that are at risk for developing the Post Intensive Care Syndrome. I would say realistically on the order of millions of patients per year in the United States are at risk for developing this syndrome.
Does it seem to affect people of a certain age, a certain group, male, female?
BRAD BUTCHER: It seems to affect all people equally. Young and old, all demographics and genders. It’s an equal opportunity offender, unfortunately.
As a doctor, as a provider how do you recognize it and what should family members be looking out for?
BRAD BUTCHER: I’m glad that you brought family members up because the patient is not the only person who can suffer the Post Intensive Care Syndrome. Family members can also experience the psychological consequences of PICS. Many family members who witnessed their loved one going through an intensive care unit stay can develop anxiety, depression, or post-traumatic stress disorder. And if that person becomes a caregiver for their loved one when they do come home, it can put a significant stress on them financially and on the social roles that they typically play. With respect to recognizing the Post Intensive Care Syndrome, we invite patients to our multidisciplinary clinic here at UPMC Mercy and put them through a thorough screening process in a visit that takes roughly three hours to complete.
Do you screen all patients? Is that a matter of course?
BRAD BUTCHER: Not every patient who has been in the intensive care unit will be screened for our clinic. We start the screening process when patients have had an ICU length of stay of four days or greater. Not all those patients will end up coming to the clinic, but we do try to include as many as we possibly can.
When you’re screening, what kind of questions do you ask them? Are you guys looking for something that might trigger or that might say this is a risk factor or a person who may be?
BRAD BUTCHER: In addition to screening for the Post Intensive Care Syndrome, I think one of the most beneficial things that our clinic does is educate patients. The first person they see in the clinic is a pharmacist, who reviews their medications with them and educates them about the purpose of their medications and how to take them properly. They are next seen by a respiratory therapist to be evaluated for any problems with their breathing that may have developed as a consequence of having had a breathing tube in the intensive care unit. Many of these patients have preexisting lung disease like emphysema or COPD and aren’t on the appropriate medications or don’t know how to use their inhalers properly. We spend a lot of time teaching them about their inhalers, set expectations with respect to what they are capable of doing, and then refer them to pulmonary rehabilitation if appropriate. They’re next seen by a trio of therapists: a physical therapist, occupational therapist, and a speech language pathologist. These therapists take them through a series of screening tests to determine the functional disabilities these patients have. This includes the ability to perform activities of daily living, such as bathing, grooming, and feeding themselves, or instrumental activities of daily living, which are things that are slightly more complicated, like using public transportation, balancing a checkbook, and preparing a meal. We take them through a standardized cognitive screening questionnaire to assess their language, abstraction, and visual-spatial skills, and memory. After this, we take them through a physical therapy evaluation where we test their endurance, strength, and balance. We also provide them with validated questionnaires to screen for symptoms of anxiety, depression, or post-traumatic stress disorder. If they’re lucky enough to have a caregiver with them, we also screen the caregiver for caregiver burden to make sure that they’re being taken care of as well. We then have a lengthy discussion about how they want their future health care to look like. We ask about whether they would want to return to the ICU in the future and who they want to make decisions for them if they are incapable. And we end the visit by setting goals for the next three months to ensure that the therapy that we provide for them is tailored to meet their goals.
How long have you done this? And tell me how the idea formulated. What was the genesis?
BRAD BUTCHER: I first learned about the Post Intensive Care Syndrome three years ago at the Society of Critical Care Medicine’s annual congress. The speaker left a profound impression on me. I came home from that conference thinking we should really do something about the aftercare of these patients because they’re such a vulnerable patient population and the current medical system isn’t really equipped to provide them with the assistance that they need.
Are these not services that they could get elsewhere?
BRAD BUTCHER: Theoretically yes. But in the current model of care, the burden of caring for these patients once they leave the hospital typically falls to their primary care physician. And as many of us know, primary care physicians have a huge work burden already and are generally only able to spend about 15 to 30 minutes with a patient. Imagine digesting a month-long hospitalization including two weeks in the intensive care unit, teaching them about new medications, screening for all any deficits they might have, answering all of their questions, and getting all of that done in 20 minutes. It’s impossible. In our clinic, we have the luxury of time and can spend two to three hours with each the patient. The beauty of the clinic is the multidisciplinary and holistic approach that we take to the patient. We treat each patient as a person, not just as a body part, or a brain, or a spirit. They get seen by at least eight providers when they come to our clinic. We look at every aspect of their recovery. We like to do goal setting with our patients. We want to know what’s really important to them and their recovery, so we have them come up with a list of goals that they want to begin to accomplish over the following three months. We tailor our therapies to help them achieve those goals. With respect to when our clinic got started, we started in June of last year. So now we’ve been up and running for about eight months.
Have you had success studies that you’re going to publish? Or is everything at this point just anecdotal?
BRAD BUTCHER: The majority of information that we have right now is anecdotal. These clinics have existed for a longer period of time in Europe, primarily in the United Kingdom and Scandinavia.
There have been a handful of studies assessing the efficacy of the clinics with respect to those that exist in the United States. There isn’t a lot of literature available yet, but we’re fortunate enough to be a member of the Society of Critical Care Medicine’s THRIVE post-ICU clinic collaborative, which is a collection of nearly 20 clinics across the world who collaborate on a monthly basis to determine the best way to care for these patients. Each one of us does it in a slightly different way, but by interacting with one another frequently, we’re developing best practices and hope to use our collective data to fund a research engine to drill down and figure out what exactly these patients need and how can we best serve their interests.
Were you guys first in the country? Are you among a handful that exists now? Do you know how many other programs like yours?
BRAD BUTCHER: We were definitely not the first in the country and I can’t tell you exactly how many clinics there are, but compared to other types of specialized medical clinics that exist, there are really only a handful of clinics in the country, primarily located at academic medical centers, that are addressing the needs of patients who develop the Post Intensive Care Syndrome.
What’s the bottom line for. If there’s something you want our viewers to walk away with after seeing this report?
BRAD BUTCHER: The bottom line is that surviving a critical illness is a life changing event and that when a patient leaves the doors of the intensive care unit, their critical illness doesn’t magically end. They’re just taking the very first steps on a long journey towards rehabilitation.
So we’re going meet Connie. Can you tell me a little bit about her situation?
BRAD BUTCHER: Connie is a really remarkable woman. She was admitted to the intensive care unit in May of 2018 with septic shock, which is a very severe infection, as a consequence of a pneumonia that she developed in the community. The pneumonia was severe enough to cause a type of respiratory failure that we refer to as ARDS. Her respiratory failure was so severe that she needed to be paralyzed for a prolonged period of time and flipped onto her belly in the hospital bed in order to increase the amount of oxygen that we could deliver to her bloodstream. She was in the hospital for a total of 29 days, 22 of which she spent in the intensive care unit, 11 of which were spent on a mechanical ventilator, or breathing machine. After she left the hospital, she was discharged to a skilled nursing facility, where many of our patients go to begin their rehabilitation journey. We were fortunate enough to see Connie while she was in the skilled nursing facility, so by the time she got discharged from that facility we already had a plan in place for her rehabilitation aftercare.
How did she come to you? Did she refer herself?
BRAD BUTCHER: We had identified her in our screening process and kept tabs on her. Then we called her skilled nursing facility to ask them to bring her to an appointment.
Do you remember what she needed at that point, what her deficits were?
BRAD BUTCHER: I do. I think she has a very interesting story and one that’s probably not unique to her. As I mentioned at the beginning, PICS is a constellation of physical, cognitive, and psychiatric disabilities, but what we’re learning in the clinic is that they don’t all necessarily come at the same time. When Connie first came to the clinic, the physical limitations were certainly the focus of the visit. She was having trouble doing simple tasks like buttoning a shirt, brushing her hair, and feeding herself, so we focused on physical therapy at that time. Connie also had pretty severe pre-existing emphysema or COPD that wasn’t being as effectively treated as it could have been, so we got her in touch with a pulmonologist and pulmonary rehabilitation. Over the course of the next three months it became clear, while she was working on her physical limitations, that cognitively she had noticed some differences. She developed a tremor in her hands and she also noted that she was having some difficulty finding her words even though she scored perfectly well on our cognitive screening tests. This triggered us to refer her to cognitive therapy as well. At her most recent visit, six months after her initial visit, we started to appreciate the psychiatric toll of her recovery on her, and she screened positive for depression and anxiety. She had also resumed smoking as part of a coping mechanism to deal with her depression. We had to redouble our efforts to get her to stop smoking and then referred her to psychotherapy. And just to tie into the beginning of the interview, when she went to the therapist, she was shocked to know that the therapist had never heard of the Post Intensive Care Syndrome. So she was questioning: how can this person help take care of me if they don’t even know what I have? I think one of the benefits of an interview like this is to educate the public at large about what the Post Intensive Care Syndrome is because many people who have survived a critical illness or have a loved one who survived a critical illness appreciate that that person is fundamentally different than they were before they became ill, but until 2010 there was never a name to dscribe that phenomenon. Now we have a name for it, but most people have still never even heard of it. Therapists, primary care physicians, and even some intensivists don’t really appreciate what the Post Intensive Care Syndrome is. The goal over the next decade is to get the word out about what PICS is so people can recognize if they’re suffering from symptoms of it and get the help that they need.
END OF INTERVIEW
This information is intended for additional research purposes only. It is not to be used as a prescription or advice from Ivanhoe Broadcast News, Inc. or any medical professional interviewed. Ivanhoe Broadcast News, Inc. assumes no responsibility for the depth or accuracy of physician statements. Procedures or medicines apply to different people and medical factors; always consult your physician on medical matters.
If you would like more information, please contact:
Madison Brunner, UPMC
412-432-8390
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