COPD: End-of-Life Care

Many people have not talked with their loved ones about how they’d like to be cared for at the end of their lives. It’s an important talk to have, especially for those living with a long-term (chronic) disease, such as chronic obstructive pulmonary disease (COPD).

What kind of care would you want if you were no longer able to speak for yourself or make your wishes known?

If you developed severe breathing problems, would you want to be placed on a machine that breathes for you (ventilator)?

It's not easy to talk about end-of-life issues. Let your family know that by talking in advance, they'll be more comfortable if they have to make difficult decisions about your care.

Talking with your healthcare provider

The best time to plan for end-of-life care is while you’re fairly healthy. And a good person to start with is your healthcare provider. Once you have made your decisions and plans, share them with family members and other care providers.

Discuss the different kinds of supportive care you might want and for how long. Ask about the quality of life linked to different choices. Having this discussion with your healthcare provider can help you think more clearly about options you might want--and not want--at the end of life. In addition to your healthcare provider, there are others who can also help:

Palliative care providers. These healthcare providers focus on lessening pain and other symptoms of long-term and serious conditions.
Hospice representatives. These providers offer end-of-life care.
Religious advisors or clergy members. Hospitals have pastoral counselors.
Social workers. Hospitals also employ these professionals.
Counselors or therapists.

There are also many resources available online.

Palliative care

People with advanced COPD need to think about the eventual need for palliative care. This is care aimed at making you as comfortable as possible.

Palliative care is always part of end-of-life care. But it can also be part of care for anyone at any stage of a serious or chronic illness. Palliative care is different than hospice care.
The purpose of palliative care is to ease symptoms linked to serious illnesses. Some of these symptoms may include pain, nausea, tiredness, shortness of breath, anxiety, and depression.
Palliative care doesn't cure illness. But it does try to make living with symptoms easier. Palliative care measures can help decrease the feeling of shortness of breath, for example.
People with severe COPD generally benefit from finding ways to decrease their physical effort to take care of their daily needs. Examples include living on one floor of a house, or having meals provided.
Check with your health insurance plan to see if this type of care is covered.

Written documents

Put your wishes for end-of-life care in writing. Give copies to healthcare staff and family members. An advance directive is a legal document that guides your healthcare providers when you’re not able to make decisions for yourself.

A living will is one type of advance directive. This document describes the type of medical care you would like at the end of your life.
A medical, or durable, power of attorney is a second type of advanced directive. This document names the person you would like to make healthcare decisions for you if you can’t communicate.
Your healthcare provider or local hospital will have forms for both types of advance directives. They are also available online. The forms vary by state, and it’s important to use forms accepted in your state.
Give copies of both documents to your healthcare provider and family members and keep copies for yourself. You’ll want them with you if you are hospitalized.
You may also want to talk with your healthcare provider about the physician order for life-sustaining treatment (POLST). This form encourages active communication between you and your provider. This helps to prevent unwanted, aggressive treatment at the end of life. The use of the POLST document and wallet card also varies by state. Talk with your provider about what is available in your state.

What you want may change over time. Make sure your documents are always up-to-date. If your wishes change, talk with your family and healthcare providers. And update your documents.