When it comes to making important decisions about your medical treatment and care, knowing how to define your goals and wishes on paper is very important. This is key to ensuring that both your family and your medical providers have a clear roadmap to what your healthcare preferences are if you are unable to explain them in the future for any reason.
What is Advance Care Planning?
Simply put, advance care planning is thinking about your possible future medical care needs and putting plans related to those needs down on paper. There are many parts of future care to consider, and several written tools available for recording your wishes.
Why Do I Need Advance Care Planning?
Right now, you can make decisions about what kind of medical care you want to receive, and you can clearly communicate those decisions. Most of us don’t like to think about how that can change, and sometimes it’s unexpected when it does. Unfortunately, only a small number of adults- as few as 1 in 3- pursue advance care planning to address this possibility.1
So, having conversations now with your family, doctor, and even close friends about what you want your medical care to look like, is crucial. By creating clear written instructions based on these conversations, you can ensure that your decisions are heard in the future, even if you can no longer make or share decisions due to your health.
This also helps your loved ones avoid the stress and confusion that can happen if your wishes aren’t clearly spelled out. Without advance care planning, there can be uncertainty and disagreement between friends and family who are left guessing what your choices would be if you could speak for yourself.
How to Start Advance Care Planning
To begin the process of advance care planning, you can talk to your doctor and let them know you are interested in meeting to discuss these topics. This visit is covered by Medicare. Talking with your doctor will help you sort out what is known, and what may be likely in the future, in relation to your health conditions. It also means your doctor will be fully informed of your choices. This is an important point, since 65-76% of doctors whose patients have advance directives don’t even know that they’ve created them. 2
As you prepare to have this conversation with your family and doctor, some topics to consider are:
- Who do I trust and want to be my spokesperson if I am incapacitated?
- If I have little chance of full recovery, would I want life-saving measures such as CPR or being placed on a ventilator (breathing machine)?
- What are my religious and spiritual beliefs related to illness, treatment, and the dying process?
- What medical treatments go against my beliefs?
- At the end of my life, is it important to me to die at home and avoid the hospital if possible?
- What kinds of goals are most important to me- being pain free? Spending time with family? Reducing symptoms? Avoiding side effects of treatment?
- What are the goals of any treatments offered now? To cure, or to control symptoms? When does it make sense to stop any treatments?
- If I cannot eat or drink, do I want a feeding tube or intravenous hydration?
With all of these topics, you can continue to revisit ideas as things change about your situation and your health. If you decide to change something later, you can. Right now, it’s just an opportunity to make your values known and to make the best decisions that you can with the information you have at this time.
Some Important Documents to Consider
The written documents that are completed as a part of advance care planning are called advance directives. There are a few common forms you’ll want to understand that are used to reflect your decisions. They are as follows:
Durable Power of Attorney for Healthcare
Also called a healthcare proxy or healthcare power of attorney, this legal document is what designates who will make decisions for you if you are unable to do so. This person should be someone close to you, such as a trusted family member or friend. Some terms you may hear used to describe this person are surrogate, representative, or healthcare agent.
Living Will
In the event that you are dying or permanently incapacitated, this document describes to doctors all of the specifics of what treatment you would want in an emergency. This includes under what situations you would want, or might want to avoid, care such as CPR, mechanical ventilation to help you breathe artificially, using artificial nutrition and hydration at the end of life, and more. It can also describe the kinds of comfort measures you would want if you are seriously ill.
POLST or MOLST Form
You can ask your doctor if your state uses this type of form. This form, called either the Physician Orders for Life-Sustaining Treatment or Medical Orders for Life-Sustaining Treatment form, serves as medical orders written ahead of time for treatment you might need at the end of life or if you are critically ill. Rather than waiting for a doctor to write orders for your care, these orders are automatically in place for any healthcare providers to act on in an emergency.
DNR or DNI
A DNR, or Do Not Resuscitate order, is needed in addition to your other advance directive paperwork if you do not want CPR performed if your heart stops beating or your breathing stops. Similarly, a DNI or Do Not Intubate order says that you do not want to be put on a breathing machine. If you have one of these forms, it’s good to keep a copy in an easily accessible location in case of emergency. Some people will keep it on their refrigerator so that any emergency personnel that come to their home can clearly see their wishes.
Many states have their own advance directive forms. You can check with your local area Agency on Aging for more information. To find their phone number, you can call the government’s Eldercare Locator at 1-800-677-1116 or visit https://eldercare.acl.gov. Your doctor’s office should also have access to the appropriate forms.
Once You Have Completed Your Advance Care Planning
As part of the process of making your advance directives official, your state may require a witness to sign your documentation, and in some cases may even require the forms be notarized. You can ask your doctor about this, as they may even be able to provide assistance in completing this part of the process.
Once all of this documentation is completed, you’ll want the person designated as your healthcare power of attorney to have a copy. It’s also helpful to provide copies to your hospital of choice, and to your doctor’s office. Remember that if you make any changes to this paperwork in the future, you will need to update any copies you have given to healthcare providers or family.
Advance Care Planning is Worth It
Although all of this may seem like a big investment in time, and it is an emotional topic, ultimately advance care planning ensures that you receive the medical care you desire most no matter what unexpected circumstances you may face in the future.
You can just cover the important basics such as who you want to speak on your behalf if you can’t, and what kind of life-sustaining treatment you might want, but you can also be as detailed as you want to be. Some people use this opportunity to address what kind of care they would want at home if their health declines due to a diagnosis such as Alzheimer’s disease or Parkinson’s, for example.
If home care is a part of your wishes for advance care planning, Caresify can guide you through the process of setting up a reliable and professional in-home caregiver to meet your care needs. You can read more here, or call 888-799-5007.
