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.

Advanced Lung Care Guide

Developed in collaboration with the National Partnership for Healthcare and Hospice Innovation, this guide is a home care resource for people with advanced lung disease and their caregivers to help prevent or manage respiratory symptoms at home while under the care of their medical team.
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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.  

  • A medical specialty focused on relieving pain, stress and other symptoms with a goal of improving your quality of life.
  • A specialty that uses a variety of medications and strategies to address symptoms and discomfort you are experiencing.
  • Care received at the same time as other treatment for your chronic lung disease.
  • Only administered during hospice or at the end of life.
  • A signal that treatment is not working or a replacement for treatment.
  • Morphine-only treatment.
  • Something you should wait to ask for.

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

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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.

Page last updated: November 17, 2022

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