Managing Advanced Lung Disease

When you reach a point of having advanced lung disease, or caring for someone who does, there may be some uncomfortable topics you have not yet explored that need to be discussed. It is inevitable to think about death and what the future will hold. Each person’s experience is different. No one can predict with certainty the timeline or path your chronic lung disease will be, but it is helpful to make plans for whenever that day comes.

Finding Support

The physical challenges of managing advanced lung disease can be exhausting. It is common to experience feelings of sadness, fear and worry at times. There are things you can do, and resources available to you, to help you take care of yourself and feel better.

• Take care of yourself. Staying as active as you are able is worth the effort for your body and your mind. See friends and family, get outside and keep doing the things you enjoy as best you can. Eat nourishing food and stay hydrated.
• Connect with others who understand what you are dealing with.  Look for a Better Breathers Club or other support group in your area. Join an online support group like the Living with Chronic Lung Disease Community on Inspire, which is available 24/7. Call or send an email to the Lung HelpLine to get free expert information and referral to resources.
• Talk to your healthcare team. Ask them to work with you to help come up with coping strategies and resources that may help improve your quality of life.  

Getting Started with Palliative Care

As your advanced lung disease continues to progress, you may experience a variety of symptoms that occur more frequently or with more intensity. Many people wait longer than they should before they begin palliative care.  

End-of-Life Care

When you spell out your wishes in an advanced directive, you remove the guesswork of your caregivers and healthcare team on a variety of decisions you can make ahead of time. An advance directive includes completing a Power of Attorney to designate someone you know and trust to make healthcare decisions for you if you are unable to do so and a Living Will outlining your end-of-life medical choices, which may include:

• Where do you want to receive end-of-life care? Typically, common choices are in a hospital, a hospice facility or a home.
• Do you want to receive comfort care?
• If you are unable to eat, do you want to receive artificial food?
• Is there a certain point you want to stop receiving treatment?
• Do you want to receive resuscitation (advanced life support including chest compressions and breathing machine) if your heart stops or you stop breathing?

Additional Resources

• Getting Ready for Your Next Office Visit [Spanish]
• Palliative Care and Lung Disease Worksheet
• Understanding Communication: What is Your Style?

Related blogs

• Understanding Palliative Care: It’s Not What You Think
• An Inside Look at Lung Cancer and Palliative Care

Still have questions? You can reach out to the Lung HelpLine at 800-LUNGUSA to reach staff who are licensed medical providers and can answer all your lung-health related questions and connect you to the resources you need.