At-Home Support for Advanced Lung Disease Is Here

[MUSIC PLAYING] Welcome, everyone. I'm Dr. John Whyte, the Chief Medical Officer at WebMD. We often talk about diabetes, talk about heart disease, something that we haven't spent as much time on that I think we need to is lung disease. It's always frightening when someone has trouble breathing. But where is the innovation? What's happening in terms of research?

So today, I'm joined by two experts to talk exactly about that. Deb Brown, she's the chief mission officer of the American Lung Association, and Tom Koutsoumpas, he is the CEO of the National Partnership for Health Care and Hospice Innovation. Thanks for joining me today.

Well, thank you, John. It's a pleasure to be with you.

Thank you, John. It's so nice to be here.

Well, Deb, I want to start with you. We talk about lung disease. What's the burden in terms of the impact on Americans?

Well, chronic lung disease is a type of disorder that affects the lungs and other parts of the respiratory system. And it usually develops slowly. And it may get worse over time. Chronic lung disease may be caused by using tobacco or by breathing in secondhand tobacco smoke, chemical fumes, dust or other forms of air pollution.

And the types of chronic lung disease that we often hear about are asthma, chronic obstructive pulmonary disease or COPD, pulmonary fibrosis, asbestosis, pneumonitis, and other lung conditions. And sometimes, chronic lung disease is also called CLD. But there is a tremendous burden for people who live with this disease and their families.

And in 2016, there were more than 2 million emergency department visits and more than 650,000 hospitalizations due to COPD, which is the most prevalent chronic lung disease. And COPD also costs the health care system more than $50 billion a year, mostly due to hospitalizations and ER visits.

Well, Tom, I mentioned at the beginning, we're often talking about diabetes, heart disease. I hear a lot about innovation in those categories. New technology, new drugs. I may not be aware of all the innovations that are going on. I know you spend your days often talking about innovation and the health care system and hospice care. So what's the latest that you can tell our viewers in terms of innovation when we're talking about chronic lung disease?

Yes. Well, and thank you, again, John. It's such a challenging disease. And what we find through our members at NPHI, our goal is to keep them at home as long as possible. I think that's one of the most important parts of our care delivery model. Is how do we keep patients at home supported. How do we support the family, the caregivers, and make sure that they're not yo-yoing in and out of the ER. That they're actually comfortable being at home and with the support that our programs give them.

It's one of the most challenging diseases that we face. Our goal in trying to help them stay at home, relieve those symptoms and manage the advanced illness together is really what our focus is. We do have an exciting, I think, innovation that we're going to talk about today, which is our advanced lung care guide for people living with advanced lung disease.

Deb, I want to go back to-- Tom mentions getting more care in the home. I feel like that's changed during the pandemic. Even as a physician, we tend to focus, need to come into the hospital, especially when we're talking about breathing and other issues, has the pandemic changed that mindset about care in the home for lung disease?

I think the pandemic has changed the mindset in that, we want to make sure individuals who have chronic lung disease have the resources that they need. So there are many more resources online for individuals. We also know that there are ways to support one another.

So for example, the American Lung Association has a variety of online communities where individuals can go in, they can ask each other questions, they can talk to each other, there are health care professionals on there who provide answers. So I do believe that many more people are turning to online resources or telephonic resources. And so that is a bit different than what we were accustomed to prior to the pandemic.

Now, Tom, you referenced you both have an exciting partnership together. You have a few things to announce. So tell us the latest of the two of you working together.

Well, I am just so pleased and proud to be working with the American Lung Association. Our partnership has really provided such extraordinary opportunity to create what we're calling the advanced lung care guide for people living with advanced lung disease. This is an extraordinary document.

It is a comprehensive document that helps the patient, the family, the caregiver, the extended family. It provides support for self care as well for the extended family and the caregivers who are caring for people with advanced lung disease. It's just a comprehensive guide that allows people to-- right within one resource, to find out all sorts of important information that will help them manage the disease and stay at home, which is really exciting.

Deb, what is this guide going to do for viewers?

I think this guide is so important for so many reasons. We know that it really can be overwhelming at times when a person or a family member has severe lung disease. And that is why it was important to the American Lung Association, to work with the National Partnership for Healthcare and Hospice Innovation to develop and share this guide.

The guide serves as a reference to the many questions and concerns people have with lung disease and their families have. And I think an important part of living with chronic lung disease

is finding the right support-- both for the patients and the caregivers. And the American Lung Association is committed to supporting those living with chronic lung disease. So when you have COPD or lung cancer, as we mentioned earlier, interstitial lung disease or any other type of chronic lung disease, this guide that we have jointly produced will help you learn some new home care strategies to help manage symptoms.

Now, we're all involved in health care. So we're used to interacting with patients, talking about the disease, learning its pathophysiology. But let's be practical. A lot of folks who have lung disease or caregivers of those with lung disease, it can be scary, the thought of taking care of someone at home. What if something happens that they're not prepared for?

I want to ask you both. And let's start with Deb. What would you tell viewers? What do you tell patients to help address that fear, that concern. Now we know from the pandemic, people want to stay in their home. We hear that time and time again. But there is that fear of actually, can you really do it at home?

Yeah. I think what I would encourage individuals to do is utilize this guide for example. There are common symptoms of advanced lung disease and we explain that many of these symptoms can be managed or controlled with medications and self-care techniques. And for example, we know, and Tom mentioned this earlier, shortness of breath is a common symptom.

So we outlined breathing and relaxation techniques such as pursed breathing to help reduce shortness of breath, or how to improve the air quality in the home. So we encourage people to become familiar with the topics in this document so that when it comes time to implement them, they feel comfortable and are able to implement them.

I would completely agree what Deb. And I think, John, the guide is so comprehensive and yet so easy to understand. So I think it was geared toward the patients and the families, and making sure that it was a readable document that would provide the kind of support that if you look through it and look at the content, we start with understanding your lungs and advanced lung disease, the symptom management and self care tips.

It goes through the medications, creating an action plan. Really, how to use the devices that help you breathe better. So there's a very basic level of information that allows people to comfortably understand and support the patient and for the family as well.

So I think we've got some wonderful answers to help with that calmness. Otherwise, people really do panic. And we see the patients going to the ER on a regular basis. And that's where--

[INTERPOSING VOICES]

Sure. Yeah. I mean, when you have trouble breathing. It's very scary or to see someone. And we should acknowledge that there are going to be some ups and downs. Right, Tom? So people can get this guide and try to follow it, but still, they still might end up in the emergency room or have to go to the doctor's office. So this is really about that longer term strategy, isn't it?

Yes. Absolutely. And certainly, all of our providers and throughout the nation, our NPHI members are from California to the East Coast to North and South. All of them are armed with this guide as well. So our clinicians are familiar with the guide and work with the families who have advanced lung disease.

They're, obviously, able to send nurses into the home when they need. If a patient is struggling and has issues that need to be addressed clinically, we'll, of course, send our clinicians out to the home. So there's a lot of support. The guide is the in-home support. But then in addition, we have the clinical teams that will go into the home and support the patient and family.

I think one of the other important things about this particular guide is-- and again, we hit on this. Is that there's often an emergency room visit or there's a frantic hospitalization or hospital call or something like that. But I think one of the other useful sections of this particular guide is to talk about when to call your care team.

We want people to be able to manage their disease, but we also want them to have guidelines when it is really important to reach out to their health team and to make sure that this might be normal for them or this might be not so normal for them, and then they may need to have more discussion around the treatment or next steps for that individual.

And we really have to remind viewers that in terms of advanced lung disease, we have made a lot of progress in terms of what we're able to do in the home, in terms of giving treatments, in terms of helping patients feel comfortable. People aren't always aware of that.

And in some ways, the pandemic has taught us things that we thought we couldn't do in the home, we actually can do in the home safely. Would you agree with that, Deb?

I would absolutely agree with that. We are seeing more patients understanding their disease better. I think that the treatments options for patients has grown. And so I think many people living with lung disease are becoming and feeling more supported and informed on their disease. And so that is helping to manage that disease even better.

I think the pandemic underscored the need to focus on the home and to focus on helping people stay in the home. I really do think this is a game changer, and that giving them this kind of information, being able to easily access it. To have a hard copy in your home with you and really understand all of the kind of informations that are a part of it will really make a huge difference in people's lives.

Well, we encourage everyone to check out this guide. I want to thank you both for joining me today and helping raise awareness of where we are in chronic lung disease and advanced lung disease. So Thank you both.

Thank you.

Yeah. Thank you so much, John. [MUSIC PLAYING]