Post-Intensive Care Syndrome (PICS)

Podcast Transcript

Raed Dweik, MD:

Hello, and welcome to the Respiratory Inspirations Podcast. I'm Raed Dweik, chairman of the Respiratory Institute at the Cleveland Clinic. This podcast series of short, digestible episodes is intended for patients and families, and covers topics related to respiratory health and disease.

My colleagues and I will be interviewing experts about timely and timeless topics in the areas of pulmonary, critical illness, sleep, infectious disease, and related disciplines. We will share with you information that will help you take better care of yourself and your loved ones. I hope you enjoy today's episode.

Hassan Khouli, MD:

Hello. Our podcast today is on post-intensive care syndrome and Post-ICU Recovery Clinic here at the Cleveland Clinic. I want to welcome Dr. Michelle Biehl, who is gonna be our guest today. Dr. Biehl is the director of the Post-Intensive Care Recovery Program at the Cleveland Clinic. She is a staff physician in the Department of Critical Care medicine and the Department of Pulmonary Medicine at the Cleveland Clinic. Welcome, Michelle.

Michelle Biehl, MD:

Thank you very much for having me, Dr. Khouli.

Hassan Khouli, MD:

I am Dr. Hassan Khouli. I'm the department chair for Critical Care Medicine in the Respiratory Institute at the Cleveland Clinic. We're gonna talk today about such an important topic and a common one, unfortunately, as well here.

So, for our consumers, for people really who are not as much familiar with the term or maybe even with the ICU environment, maybe, we can start by you describing what the intensive care unit environment is and set the stage for future more questions that we can engage about the syndrome itself.

Michelle Biehl, MD:

Sure. So, ICU stands for Intensive Care Unit. And that's a place in the hospital where patients go when they are severely ill or critically ill with critical injuries. And ICU is a place where you're gonna have advanced monitoring assistance for these patients and advanced therapies. It's a fast-paced environment, often very noisy, where patients are in a room. They are being monitored with different cables, different types of advanced monitoring.

They might have lines in their arms to monitor and to provide medications. They might have a breathing tool that's helping them breathe. The team that takes care of these patients is usually a large number of healthcare professionals. So, it's a multidisciplinary team. So, patients and families might see many providers come in and out of the room. And for example, there is gonna be a nurse, a respiratory therapist. They're gonna have physical therapist or occupational therapist coming to see them. Physicians, different types of specialties, but there is an intensivist that is gonna be seeing these patients and as well as other types of physicians.

There are advanced care providers like nurse practitioners or physician assistants who are also part of the team, a pharmacist who is also part of the team. So, it's an environment that can be very stressful for patients and for family members. But this multidisciplinary team is there to help patients get better quickly.

Hassan Khouli, MD:

Thank you, Michelle. I think for many of us who work in such an environment, we take it for granted and then we're used to it. But you're right. I mean, you really described very well what that environment is like and how fast paced it can be.

What I really like also is how you emphasize the role of the team, that these are really team efforts. They're led by a physician who is caring for the patient and leading... you know, leading the team with all these people who are their main focus is to care for the patient and care for the families as well who are going through that experience being critically ill in the intensive care unit. So maybe, we can actually talk a little bit more specifically about the post-intensive care syndrome. And what is that? How can you describe it in simple terms for us?

Michelle Biehl, MD:

Sure. So, post-intensive care syndrome is a term that it goes by PICS, P-I-C-S. And this term was created in 2012 as an easy way for us, physicians and healthcare professionals to understand what ICU survivors go through after they have been through a critical illness.

So, it encompasses an umbrella of deficits or difficulties that patients encounter after being in the ICU. And those deficiencies or impairments can be in a physical way, mental health or like emotional, psychological, as well as cognitive, and is extremely common after patients have been in the ICU to have those issues.

Hassan Khouli, MD:

Thank you, Michelle. Maybe you can, you know, elaborate a little bit more about what examples of these physical or cognitive or psychological symptoms that patients may experience when they have such syndrome?

Michelle Biehl, MD:

Sure. So physically, it's quite common for patients to have weakness, to have tiredness, fatigue, shortness of breath. They might have trouble swallowing. They might have trouble just doing basic things that they used to do before being in the ICU. And now, they have to relearn, for example, walking or taking a shower or eating on their own. So those things, a lot of patients have trouble, which you call activities of daily or ADLs. And then, they need rehabilitation to learn how to do those things again.

Also, extremely common are mental health or psychological issues. So, patients may be quite worried, after they get home with getting sick again. They might be in a sad mood. Depression can develop. They can have anxiety. They can feel quite on edge or restless. They might take a little pleasure in doing things. And something you call PTSD or post-traumatic stress disorder is also common. So, these are patients who keep having nightmares or ideas of what happened to them in the ICU.

So, they keep having some images that they are not, you know, they don't know what was real, what was not. And that goes because patients were a lot of times on sedation in the ICU. And they have those gaps in the knowledge of what happened to them when they were admitted to an ICU. And this can be quite frightening to the patients and usually manifest as like nightmares or ideas of when they were in the unit. In terms of cognitive issues, memory difficulties, lack of attention, lack of finding the right word, can be very forgetful. And this is also quite common after being in the ICU.

Hassan Khouli, MD:

A lot of symptoms, and I can imagine how this could be overwhelming for patients and for families and then caregivers who are caring for them too. So, it's good to know about all of that. I think many of us, regardless of what role we are in, if you are familiar with healthcare or if we are a patient, like to know what's ahead. We want to know what to expect sometimes so we can, you know, we can be more prepared there. So, thank you for sharing all of this with us, Michelle. Who is usually affected by it? Is it everybody who comes through the intensive care unit? Are there some patients who tend to have more likelihood chance of being affected by this?

Michelle Biehl, MD:

Sure. So, there are risk factors or there are patients that might develop this more commonly. And those patients are the ones who are in the ICU for a prolonged period of time, over a week or so. Those patients who have a breathing tube and a breathing machine, which is mechanical ventilation. Those patients who have confusion, what we call delirium during the ICU stay as well as something you call ARDS or acute respiratory distress syndrome, which is a severe form of respiratory failure. So, patients who are severely ill, the highest acuity in the ICU is those who are gonna have high risk factors to develop post-intensive care syndrome.

Unfortunately, it's very common, extremely common. Literature goes from 50 to 80 percent of patients. So, can you imagine half of the patients who live in the ICU might have this? And it is extremely important to understand, you know, what it is for the community, for patients who live so they know that they are not alone in this, that other people are going through the same thing. And there are things that can be done to help them in their journey to recovery.

So, I think awareness is really key, not only for healthcare professionals, but for patients and families who are really leaving the unit, getting home, what they might expect happen to them during those and knowing that this is common, and they are not alone on this.

Hassan Khouli, MD:

Thank you, Michelle. I'm sure for our audience who are listening to all of this, they're quite interested, curious about can this be prevented? You know, what can they do, them or their families, to prevent this if any?

Michelle Biehl, MD:

Sure. So, during their ICU stay, there are several things that the healthcare professional team can do that we have learned over several years and decades that we can do to prevent these impairments. And we have bundles of care. One is quite well studied and quiet, you know, disseminated in the ICUs which is called A, B, C, D, E, F bundle. Each letter stands for a bundle of care that we provide to patients as a team to prevent the development of this post-intensive care syndrome.

And I would like to mention one that is the, the F, which stands for family. And that is the family engagement in patient care, the family empowerment. And I really want to emphasize how important it is to have family members at the bedside with these patients when they are sick in the ICU.

Families are a familiar face for these patients, a familiar voice. They help the patients feel more familiarized with the environment when they see a family member there. They help also the team members to make decisions for the next steps in patient care. So, a lot of times, patients are under sedation, in a coma state. And they cannot verbalize their wishes. And the family is there to represent the patient and to help us understand, you know, where that patient was before the ICU and what their, you know, wishes would be at that critical moment.

Hassan Khouli, MD:

Yeah. Thank you, Michelle. I'm really glad that you stressed the important role, the active role that families play in the intensive care unit and in potentially also help mitigate or help really prevent such syndrome that can affect patients who are in the ICU. They're key. Our, you know, families of patients are really key. Part of the team, as you described it in the intensive care unit. So maybe this could be a good time to talk about the post-intensive care recovery clinic that you lead here for us at the Cleveland Clinic. So please, share with us what you'd like the audience to hear at this program.

Michelle Biehl, MD:

Sure. So, I would like to start by saying that there are things to prevent post-intensive care syndrome, as I mentioned. And there are several interventions that can help mitigate or treat post-intensive care syndrome. And one of these interventions are a Post-ICU Recovery Clinic or program that help to recognize these patients' deficits or impairments that they are having after being in the ICU, help them understand what they're going through, validate their symptoms, normalize their experience, and help them in their journey to recovery.

So, we opened our Post-ICU Recovery Clinic here at Cleveland Clinic in December of 2019 after several months of work with other healthcare professionals. So, we were a team of healthcare professionals that got together with the idea of opening a post-ICU clinic. So post-ICU clinics are usually a multi-disciplinary team, meaning there are different healthcare professionals. That's gonna be a physician. That's gonna be a nurse practitioner or physician assistant. That's gonna be our team, for example, has also a physical therapist that is part of the team, a pharmacist, and a respiratory therapist.

All of these team members see the patients when they come to our clinic. And we develop a plan as a team to what are the next steps in this patient's recovery. And if I can elaborate a little bit more on the clinic, we developed the clinic in December 2019, so we opened the clinic just a few months before COVID hit. So, the pandemic really started in March of 2020. And at that point, we already have the clinic running.

And I think that was extremely helpful for patients and also for us healthcare professionals to be ready to really see all of those patients who are coming out of our ICUs with several different problems. So, we like to see patients after they are being discharged at home, for two to four weeks. That's usually a good time to assess them. We have several screening tools that we evaluate to really check how their emotional state is during those days after being in the ICU? How is their cognition to assess their physical state? Do they have weakness, shortness of breath?

We do a few tests before they come to clinic to have objective assessment. And we really talk with these patients about their ICU state. So, we try to do a debrief, meaning we go over what happened to them. It's very interesting that some patients don't want to talk or have never talked to anyone about it.

And we bring that. And they mention that it was very beneficial to them, how helpful it was for them to understand what happened. That we were the first team that talked to them about the ICU state or asked them about what they remember, how they felt after being in the ICU. And I think, as I said, validating their symptoms that they're having, normalizing and that this is common, and that we have a way to help them in their recovery. It's extremely helpful and patients feel reassured.

Hassan Khouli, MD:

Thank you, Michelle. And, you know, it's really great that you have shared some patient experiences, what they tell you, what they share with you and the team in our clinic. I think, I'm sure, you know, this will be helpful for people. It's really a nice venue for people to engage in a conversation and share what they're feeling. And you're right, you know, validate, confirm, acknowledge that these symptoms are real.

It's not only in their heads. It's something that they can, when they experience and also look for hope, I would imagine, you know, that there are certain things that you and our team who work in that clinic can provide them with help. So maybe, we can elaborate on the hope aspect of it. How do you see that playing out or being part of the message or the care plan when you work with such patients who come to our clinic?

Michelle Biehl, MD:

Yes, so the patients come. And a lot of times they are extremely worried that they are not doing the things they used to do before or they're taking a long time to recover. Some patients are sad because they're not having the lives that they used to have before. And families are also in quite distress because of their loved ones.

So, when we see them, having them understand that this is common and we have ways to help them with physical therapy, pulmonary rehabilitation, it's gonna help them regain their lung function or improve their lung function. Perhaps, cognitive rehabilitation or cognitive therapy. We talk about mental health, the psychological and how helpful some patients might be to have a counselor, a psychologist or psychiatrist to manage their medications.

And in that way, I think the patients feel hopeful and we strategize. And we plan steps in their recovery. What are the priorities, because, sometimes, patients need a lot of things to be done. And we help them prioritize what are the next steps in your journey to recovery.

And something that I want to mention that is also quite important is that post-intensive care syndrome also extends to family members. We call PICS Family or PICS-F. So, family members can also suffer, especially psychological, complicated grief. And what I mean by grief is that they are taking care of their loved ones who are now impaired. They have some disabilities for them to help. And they're not the same ones as they were before. So, they might be sad. They might be depressed. These family members might have to quit their jobs to take care of their loved ones, or they also experience significant distress when they are with their loved ones, seeing everything that they went through in the ICU. So, we're talking with these family members and acknowledging that, that they also need to look for help, for support, so they can better help and support their loved ones who have been through the ICU. So, this is also a point that we make in the clinics that I think are extremely important for the family members to hear that.

Hassan Khouli, MD:

Thank you, Michelle. You know, you describe a program that is really providing a lot of help in terms of coordination of care. And, you know, from a patient perspective, a family perspective, when they know they have to have really a lot of testing, see many doctors or many people who might be able to help them and have the opportunity to come to this clinic program and work with you and your team, that is the quarterback with a great expertise and knowledge and can guide them, answer and take care of things that are there with many people there and save them maybe some time and give them more clear directions of where things are going, that is very helpful to the patient and possibly to their families.

Maybe, you can describe what the program may be finding challenging, things that we can work on? Some people who may be listening to us may feel that they can help, or they want to contribute to this excellent program that you lead.

Michelle Biehl, MD:

Sure. So, I think disseminating the importance of what patients go through, meaning educating, making ourselves all aware of post-intensive care syndrome as we are so much more aware of like diabetes, hypertension. So, this is also aa very common thing that patients go through after being in the ICU.

So, I think educating and all of us being more aware of this condition is important and that there are resources. So how patients can look for resources, for example, in their cities, neighborhoods and find this Post-ICU Recovery Clinic. So, ask your provider about resources. You know, look for this post-ICU recovery clinics that are at this moment several in the United States. Our clinic has a website that has a lot of information about it and has a video to explain how the clinic goes that I think is quite helpful.

And we are open to any patient who has been in the ICU. We have those patients with high risk factors, but the clinic and in general, other clinics are open to patients who have been in the ICU in general and want to have more support in their journey.

Hassan Khouli, MD:

Great. Michelle, maybe you can share with us a final message. What message you like to share with the people who are listening to us as a conclusion to this podcast?

Michelle Biehl, MD:

Yes. So, as I think of ICU survivors, I want them and family members to know that this is common. This happens to a lot of patients who survive the ICU. There is help. There is hope. Patients might be quite in distress with the things that they are going through after being in the ICU, after now being home.

Sometimes, it's pretty much another big step in their recovery after they hit home. And there are resources to help them. There are post-ICU recovery programs to help them. Many places have peer support groups that can help them in their recovery and the importance of bringing that up to healthcare providers, talking about what symptoms they are having, you know, with their family members and then looking for help.

I think that's one of my main messages. The journey to recovery is usually a long journey. And focus on their improvements that they're gonna have. Sometimes, it's a little win going one day at a time and focusing also on the things that they can control and keep, you know, moving forward. I think, also having a mindset that sets up that, okay, now, I am here to look for help in this. Let's say they go to a clinic and how they can keep moving forward with their recovery. I think that's what I would like to leave here.

Hassan Khouli, MD:

Thank you for sharing this positive message of hope and what you can do to help, what our program and the clinic can do to help patients and families who are seeking and needing that. This concludes our podcast today on post-intensive care syndrome and the Post-Intensive Care Recovery Clinic here at Cleveland Clinic. My guest today is Dr. Michelle Biehl, the director for the Post-Intensive Care Recovery Clinic here at Cleveland Clinic. I am Hassan Khouli, the department chair for Critical Care Medicine at Cleveland Clinic.

Michelle Biehl, MD:

Thank you.

Hassan Khouli, MD:

Thank you.

Raed Dweik, MD:

Thank you for listening to this episode of the Respiratory Inspirations Podcast. For more stories and information from the Cleveland Clinic Respiratory Institute, you can follow me on Twitter at RaedDweikMD.