Most people have never talked with their loved ones about how they’d like to be cared for at the end of their life. It’s an important talk to have, especially for those living with a chronic disease.
What kind of care would you want if you were no longer able to speak for yourself? If you developed severe breathing problems, would you want to be placed on a ventilator? Is it important to you to be independent and live in your own home as long as possible? Talking about end-of-life issues can be hard to do. But it’s important to take the initiative.
The best time to plan for end-of-life care is while you’re relatively healthy. And a good place to start is with your health care provider.
Find out what therapy options are likely to be available. Discuss the different kinds of supportive care you might want and for how long—such as ways to manage symptoms as they get worse, and ways to manage depression and anxiety. Ask about the quality of life associated with different choices. People with advanced chronic obstructive pulmonary disease (COPD) need to consider their need for palliative care, or care aimed at making a person comfortable. The purpose of palliative care is to relieve symptoms associated with serious illnesses. Some of these symptoms may include pain, nausea, fatigue, anxiety, and depression. Palliative care doesn't cure your illness, but does attempt to make living with its symptoms easier. For example, people with severe COPD generally benefit from finding ways to decrease their physical effort to take care of their daily needs, such as living on one floor of a house, having several meals provided, and care to relieve shortness of breath. Check with your health plan to see whether this type of care is covered.
Having this discussion with your health care provider can help you think more clearly about what options you might want—and not want—at the end of your life.
It’s especially important to discuss your wishes concerning end-of-life care with your loved ones. By letting them know your wishes ahead of time, they can make decisions more easily during a health crisis, which can be a difficult and emotional time.
It’s not always easy to bring up end-of-life issues. A spiritual advisor may help you discuss this with your family. You could start by telling your loved ones you’ve been thinking about it or that you recently read an article about it. You could let them know that by talking about it in advance, they’ll be more comfortable when they have to make difficult decisions about your care. You don’t have to address everything at once, but at least you’ve started the conversation.
Put your wishes for end-of-life care in writing so medical staff and family members will have a record of them. An advance directive is a legal document that guides your health care provider when you’re not able to make decisions for yourself.
One type of advance directive is a living will. This document describes the type of medical care you would like at the end of your life. A second type of advance directive is a medical, or durable, power of attorney. This document names the person you would like to make health care decisions for you if you are unable to communicate.
Your health care provider or local hospital will have forms for both types of advance directives. The forms vary by state, and it’s important to use forms accepted in your state. Give copies of both documents to your health care provider and family members and keep copies for yourself. You’ll want them with you if you need to be hospitalized.
You may also want to talk to your doctor about the physician order for life-sustaining treatment (POLST). This form encourages active communication between you and your doctor with the goal of preventing unwanted aggressive treatment at the end of life. The use of the POLST document and wallet card also varies by state, so talk with your health care provider about what is available in your location.
Your thoughts about the care you’d like may change with time. You can always reassess your wishes and change your forms. In the meantime, you’ll have taken an important step toward having your wishes honored.