Advance care planning is a task many put off because those conversations are difficult. But putting off those important conversations can mean having them too late.
We likely know someone who had a catastrophic illness or injury, and their family was torn apart by the responsibility of making decisions about their care in a period of anxiety and heightened stress.
Others are part of the natural progression of a terminal condition.
Advance care planning can alleviate family rifts by documenting your wishes for important medical decisions that may affect your quality of life, and can give people living with Alzheimer’s disease and other forms of dementia a sense of control over an uncertain future.
“Advance care planning is thinking and talking about future healthcare decisions,” said Jaime Cobb Tinsley, vice president of dementia and caregiver education at the James L. West Center for Dementia Care. “This planning is to help patients look across the healthcare continuum at what they want their health journey to look like.”
Step 1: Understanding Advance Care Planning
Advance directives are legally recognized documents that provide instructions for medical care and only go into effect when you cannot communicate your own wishes.
Talking about your wishes with a spouse or other family members is an important part of the advance care planning process as it gives them an insight into your desires and your wishes for your quality of life.
The two most common advance directives for health care are the living will and the medical power of attorney.
A living will is a legal document that tells doctors how you want to be treated in an emergency if you are irreversibly, terminally ill or catastrophically injured and cannot make your own decisions. You can say which common medical treatments or care you would want, which ones you would want to avoid, and under which conditions each of your choices applies.
A medical power of attorney names your health care proxy, a person who can make healthcare decisions for you if you are unable to make them for yourself. Your proxy should be familiar with your values and wishes.
You can have both a medical power of attorney and a living will.
Step 2: Reflecting on Your Values and Beliefs
Your values and beliefs undergird your life decisions, and how you would like to receive medical care is no different.
Define what living well means to you. If you were having a good day, what would happen on that day? Who would you talk to? What would you do?
What cultural, religious, spiritual or personal beliefs do you have that might impact your decisions? Are there practices that are important to you and give you comfort?
What are your goals for medical care – prolonging life, maintaining function or comfort care?
Life sustaining treatment decisions most often come up as a result of an illness or severe injury where these emergency treatments are needed to keep you alive. Doctors can use several methods including CPR, ventilators, and artificial nutrition.
Comfort care includes anything that can be done to soothe and relieve suffering while staying within your wishes for care. This can include managing shortness of breath, limiting medical testing, providing spiritual and emotional counseling, education, pain management and medication to relieve symptoms of an illness or injury.
Imagine different life-altering scenarios and think through how you would want care to be provided.
Step 3: Selecting Your Healthcare Agent
Choosing your healthcare agent is an important step in the process. Consider whether the person you choose will follow your choices, even if he or she does not agree with them.
Talk with your healthcare agent about your goals, values and preferences. He or she should be willing to accept the role and make decisions in difficult moments.
Your agent should be at least 18 years of age. Your agent cannot be your doctor or someone who works at your hospital, clinic, home health agency, nursing home or residential care home unless they are a family member.
If you do not designate someone to be your MPOA, Texas will appoint someone to make decisions for you. The first person they will look to will be your spouse. Depending on your situation, this may not be the right person to make these decisions.
If you do not have a spouse, they will look to an adult child. If you have more than one adult child, this can cause stress, as the providers will look for consensus. Next they will look to either of your parents, then the nearest living relative.
Step 4: Expressing Your Wishes
Once you’ve decided on your medical care goals and selected your healthcare agent, it’s time to put your wishes down in writing and complete your advance directive.
You can download common forms from the Texas Health and Human Services Department.
- Medical Power of Attorney (MPOA)
- HIPAA Release – naming MPOA and granting release of health information
- Out-of-Hospital Do-Not-Resuscitate Order (Considered a medical order. Must be completed with physician signature. Stops at the Emergency Room.)
- New Texas Portable Medical Order (New 2/19/23, Comprehensive Form. Considered a medical order. Must be completed with a physician signature.)
- Directive to Physician and Family or Surrogates/Living Will
Step 5: Sharing Your Plan
Make copies of these documents and share them with your healthcare agent and healthcare professionals. Talk to the rest of your family and close friends. Let them know your wishes and who your healthcare agent is.
Be sure to discuss your decisions with them so they clearly understand your wishes.
Keep a copy of your advance directive where it can be easily found, such as stuck to the side of your refrigerator for emergency responders, or a clearly labeled file. Keep a set in your glove compartment in case you’re involved in a motor vehicle accident.
Take a copy with you if you go to a hospital or nursing home and ask for it to be put in your medical record.
Your advance directives are a process, not a one-time event. Review them regularly, following any changes in health status or whenever you have a life-changing event.
You should review your advance directive every 2-3 years, at the death of a loved one, divorce, diagnosis or a decline in health.
“It’s a living document that you can adjust as your situation changes because of new information or a change in health,” Cobb Tinsley said.
When you make updates, be sure to make new copies and share the new documents with your healthcare agent and providers and your family members. Remove old copies from your glove box, vial of life on the refrigerator or your files as well.
Care & Prepare engages individuals, both healthy and those facing illness, in a proactive dialogue around Advance Care Planning (ACP) to ensure that their healthcare wishes are clear and honored. All adults over the age of 18 should have ACP education, as well as signed medical directives, because healthcare status can change in an instant.
Have you chosen someone to speak for you? “Choose your Champion!”© They can speak for you, if you cannot speak for yourself.
Providing education and assisting individuals with planning for end-of-life care through the use of advance directives for more than 25 years, Care & Prepare offers resources to assist you and your family; visit their website, careandprepare.org, or Need an ACP checklist? or call 817-247-1776.
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