Being diagnosed with a chronic disease like chronic obstructive pulmonary disease (COPD) can make you and your caregivers think about uncomfortable topics you may not have explored before, including long-term, palliative and even hospice care. Thinking through these potential situations now and discussing your wishes with your loved ones helps ensure that you will get the care you want in the future.
Getting the Care You Need
Palliative, or supportive care, is aimed at making you more comfortable and improving your quality of life. Prescription medications may be offered to relieve your physical and emotional symptoms amd counseling is available to support your emotional and/or spiritual well-being. Palliative care can also help by addressing practical concerns such as care coordination and life-planning.
Sometimes people confuse palliative care with hospice care. Hospice care is given at the end-of-life while palliative care is appropriate at any stage of your disease. Talk to your doctor about any physical or emotional concerns you may have. Then you can work together to get the supportive care you need while planning for the care you want in the future.
Points for Discussion
There may come a time when you cannot communicate your wishes. For this reason, it is important to discuss them ahead of time with your family or friends, and fill out the appropriate paperwork (advance directives) as early as possible. The sooner you discuss what you want, the less stressful it will be for you and your support system if the time comes when they may have to make potentially difficult decisions. Use the topics below as guidelines for talking to your caregivers and doctors about end-of-life care.
There are many other topics that will be addressed in advance directive. The doctor can help you get an advance directive form. Your healthcare team can help you navigate this difficult yet important decision making.
Getting Paperwork in Order
- Create an advance directive. An advance directive consists of two documents: Healthcare Power of Attorney, and Living Will.
- A healthcare power of attorney designates someone you know and trust to make healthcare decisions for you if you are unable to do so yourself.
- A living will outlines your end-of-life medical care choices. Your healthcare power of attorney can use this document to guide their decisions and put a voice to your wishes, rather than having to make decisions themselves. This can make it easier to honor your wishes.
- Work with an estate-planning attorney, or your local legal aid office, to draft a durable financial power of attorney to appoint someone you trust to make decisions about your finances; this person will also have access to your assets and accounts.
- Put your financial records in order and store them all in one place (includes account numbers, investments, credit cards, loads, deeds and more)
- Draft your will. This is a document that can be drafted with or without an attorney, and typically consists of where your belongings will go at the end of your life.
Please note: Some states require these documents be notarized, while others do not. Be sure to check the requirements of your state.
End-of-life care wishes will be spelled out in an advance directive. Here are some examples of topics you will be asked to make decisions about:
- Where do you want to receive end-of-life care? The most common choices are the hospital, a hospice facility or a home. To learn more about hospice care, call the National Hospice and Palliative Care Organization at 1-800-658-8898. Visit NHPCO.org to find a hospice program in your community.
- Do you want to receive comfort care?
- Would you want to receive artificial food if you are unable to eat?
- At what point do you want to stop receiving treatment?
- Do you want to receive resuscitation (advanced life support which includes chest compressions and breathing machine) if needed?
There are many other topics that will be addressed in end-of-life planning, and the documents can differ by state. Keep in mind, your doctor’s office can provide you with an advance directive, and they are also available online through your state’s website. Do not hesitate to rely on your healthcare team, as well as legal counsel (legal aid or private) to help you navigate these difficult, yet important decisions.
Page last updated: February 27, 2020