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In this article:
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An advance care directive tells your loved ones and doctors what you wish when you are unable to speak for yourself.
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The Providence Institute for Human Caring provides many resources that help you plan your advance directive.
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Take the time to think about which aspects of end-of-life care are most important to you.
If you become critically ill or injured, do your loved ones know what kind of medical treatment you want? Are they aware of whether you would want to go on a ventilator, or if you would reject breathing assistance?
The best way to tell your family members and health care providers your preferences is by creating an advance care directive, which outlines your wishes when you’re unable to speak or make medical decisions for yourself due to injury or illness — something that can happen at any stage of life.
Common types of end-of-life care and medical decisions
While discussing and documenting your wishes for end-of-life medical care may be difficult, it’s an important step to take. It allows you to clearly express your preferences for care when you cannot speak for yourself.
Those preferences may include:
- CPR (cardiopulmonary resuscitation): CPR or defibrillation may be used to restart a beating heart. This life-saving measure can resume normal heartbeats in young, otherwise healthy people. Occasionally, CPR does not succeed in older adults with multiple, serious health conditions.
- Ventilator: A ventilator is a machine that helps you breathe. You will likely be sedated if placed on a ventilator and may not be able to speak.
- Artificial nutrition and hydration: A feeding tube and IV (intravenous) fluids can be given near the end of life to help prolong your life. While these measures can be helpful when recovering from surgery or illness, there is no research that suggests they meaningfully prolong life.
- Comfort care: Comfort care is just what the name implies — care measures that can be taken to help you feel more comfortable at the end of life.
Navigating emotional decisions
The process of planning and creating an advance care directive is called advance care planning. While the choices are ultimately yours, it’s helpful to discuss your preferences with a trusted loved one and a professional.
The Institute for Human Caring is dedicated to advancing whole person caring across Providence. Learn more about the Institute for Human Caring.
Starting the advance care planning process
Here are four steps to consider when creating an advance care directive:
Step 1: Think
Asking yourself the hard questions takes soul searching and careful thought. It isn’t always easy to know where to begin. The following is a good place to start.
- What will be most important to you when you are dying? No pain? Being at home? Family present?
- Will you want to use life support measures if you have a terminal illness? And under what conditions? What if you have a chronic illness or disability like Alzheimer’s disease or Parkinson’s disease? Are you interested in a do not resuscitate (DNR) bracelet?
- Will you always want to know the truth about your condition, or would you rather not be aware of all the details?
- Are there any treatments you know you don’t want? Artificial breathing? Feeding assistance? CPR?
- Will your feelings change depending on the type or severity of your health issue? Do you want treatment if death is imminent? When do you want to discontinue treatment?
- Do you have limitations to your physical or mental health that will affect your health care decisions?
- Will you want to be placed in a nursing home?
- Will you want hospice care at home or hospitalization at the end of life?
- How involved do you want to be in making decisions about your overall health care and treatment?
- Do you want to be an organ donor?
- Who do you want to make decisions for you if you cannot make them for yourself?
For a helpful guide that will get you thinking about the tough questions, download this Values Worksheet for End of Life from the Institute for Human Caring.
Step 2: Talk
Getting the conversation started is often the most difficult step when sharing your priorities for your final health care wishes. Begin with the basics and determine:
- Who do you want to talk to? Are there people like your parents, spouse or children that you think should know your wishes? What about close friends or siblings? Making a list of everyone you think should be informed helps you create a manageable way to begin “the talk.”
- When is a good time to talk? Do you want to do it all at once during a family gathering? Or maybe several conversations spread out over a few months would be more your style. There’s no set schedule that’s best for everyone — choose a timeframe that works for you.
- Where do you want to talk? Do you like sitting casually around the kitchen table. Or would you prefer a more public setting like a restaurant or a park? Perhaps your church has a community room that’s available for the asking.
- What do you want to say? Write down the most important points you want to make to ensure they all get said. You don’t have to type up an official agenda — just jot down the main points you want to cover and let the conversation flow from there.
Step 3: Choose
Next, you’ll need to choose the person who will speak for you when you can’t speak for yourself — your health care agent.
What is a health care agent?
A health care agent is a person you appoint to make decisions about your medical care if you are not able to do so. The role is known by many names, including:
- Health care proxy
- Power of attorney for health care
- Attorney-in-fact
- Health care representative
- Health care surrogate
Why do I need a health care agent?
If you have named a health care agent, you can be confident that your voice will be heard, despite your inability to make your wishes known.
About half of all people over 65 who are admitted to a hospital are unable to make their own decisions due to health conditions.
A health care agent can:
- Make decisions about accepting or refusing life-sustaining treatment on your behalf.
- Speak with your health care team about treatment and medication options.
- Access and release your medical records.
- Agree to treatment or medication.
- Stop treatment or medication.
- Request an autopsy.
- Donate your organs.
Making it legal
Naming a health care agent doesn’t require lengthy forms and court appearances. In most cases, you can get the state-specific form online, at your doctor’s office, at the hospital or other facilities where you receive health care, or from your local or state government. You will typically need two witnesses who are not related to you to watch you sign and date the form.
The paperwork is easy to complete without an attorney, but a lawyer can help if you’re not confident proceeding without legal assistance. Keep the original form on file with your other important documents and give copies to your health care agent, family and close friends.
Step 4: Complete
The experts at the Institute for Human Caring put together an Advance Directive Toolkit that walks you through the steps of naming decision-makers, choosing your care options and filling out the forms that let others know your wishes.
Each state has its own guidelines and forms. You can find and download the forms you need here.
For each state listed, you’ll see two versions of the advance directive forms. The long form version is a full-length advance directive that names your decision makers and outlines your preferences for care. The short version is ideal if you’ve determined your decision makers, but are not ready to commit to care preferences.
Once you’ve completed the appropriate form, make several copies and distribute them to the people who need this vital information, including:
- Your health care decision makers
- Your primary care doctor
- Your loved ones
Share photocopies when you distribute your advance directive and keep the original in a safe, convenient place. We don’t recommend keeping your advance directive in a safe deposit box because it could limit access in an emergency situation.
It can be difficult to start the conversation about creating an advance care directive, but when the time comes for end-of-life care, you’ll be glad you did.
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This information is not intended as a substitute for professional medical care. Always follow your health care professional’s instructions.
