The ACP 3: Think About It, Talk About It, Write It Down

Dec 1

HOW TO GET STARTED WITH ADVANCE CARE PLANNING — THE ULTIMATE GUIDE

We all plan for expected events. Vacations, weddings, the birth of a child. It is just as important to talk about and plan for the health care you want to receive in the future. This process is called advance care planning (ACP).

ACP isn’t something you do at the end of life or when you have a serious illness—the rules of life apply to everyone. We never know what tomorrow holds, which means it’s never too soon for anyone to plan for future health care choices.

Having conversations about your health care choices can be difficult. While this may not be easy, the conversation and written plan is crucial. Here's why:

Talking through your goals for future health care (out loud, with someone else) helps your loved ones better understand your choices. The written plan names the person you want to speak for you if you can’t speak for yourself.

More than anything, you are giving your loved ones a sense of comfort knowing how to properly honor your wishes.

Our goal with this post (and, really, with everything we do) is to make it easier for patients and families, health care providers, and faith leaders to engage in the advance care planning process, have these critical conversations, and make these challenging decisions by providing as many free resources and as much guidance and support as possible.

What is this all about?

Despite recent gains in public awareness of the need for advance care planning, studies indicate that most Americans have not exercised their right to make decisions about their health care if they cannot speak for themselves. Though most people recognize the importance of advance care planning, very few have taken the steps to communicate and document their future health care wishes.

According to a 2013 national survey, 90 percent of participants stated that talking to the people who matter most about future health care is important, however, only 27 percent have done so.

South Carolina’s Advance Care Planning initiative, My Life My Choices, is building a foundation to increase the quality of—and access to—advance care planning by increasing public awareness, expanding access to advance directive documents through an electronic registry, and improving the ability of health care professionals to initiate and integrate advance care planning into the clinical workflow.

We provide tools to help South Carolinians understand that making future health care decisions includes much more than deciding what care they would or would not want.

This initiative was launched in 2018 by the South Carolina Coalition for the Care of the Seriously Ill (CSI) through the generous support of the BlueCross BlueShield of South Carolina Foundation. Founded in 2010, CSI is a statewide coalition that brings together many key organizations and clinicians to collaboratively redesign care, improve quality of life, and protect the ethical rights of the seriously, chronically, or terminally ill.

ACP begins by questioning.

By visiting this website, you have already started the process of advance care planning. And, like with most things, the most important part is getting started.

Just acknowledging that you need to think about your future health care choices is critical.

Here’s how to take it to the next level…

Ask yourself: What matters most to you? What do you consider a good day? What about a bad day? Have you talked with anyone about these things? Have you written them down?

This process of contemplating and exploring your future health care choices is called Advance Care Planning, or ACP. Ultimately, it is a process that helps you prepare for future health care needs should you become unable to speak for yourself.

There are three important steps to the ACP process:

Think about your future health care choices. 
Talk about those choices with others. 
Write those choices down in the form of advance directives.

Below, we will dive a little deeper into each of the three steps.

But first…

Then, after you’ve done that, dive in…

Think about it.

It all begins with taking some time to think about what matters most to you. What are your guiding principles and core values and how do they impact the kind of care you might want later and at the end of life?

Specifically, think about your ethics, beliefs, and goals…

What matters most to you?
What does it mean to you to “live well” and “die well”?
Do you have religious or spiritual beliefs that give you support, comfort and guidance?
Who can you talk with about these important issues?
How do these issues relate to your health care and quality of life?

To help with this, we have prepared a downloadable, fillable bubble map for you to begin focusing and gathering your thoughts.

Completing this quick and simple exercise is a great way to jump into the advance care planning process.

There are lots and lots of other ways to begin the process of thinking about your future health care choices. The game Hello, for example, is specifically designed to make you think about the important decisions we all have to face at the end of our lives.

Read more about how much fun we had when Jethro Heiko, the creator of Hello, came to South Carolina to help us share this wonderful game.

However you choose do it, once you have taken time to contemplate the things that matters most to you and how that may impact your future health care choices, you are now ready to move on to the next step: talking.

Talk about it.

Roughly 95% of people say they are willing or want to talk about their health care wishes. But only 32% have actually done so.

Experts like Cindy Coker of the S.C. Bar Association recommend talking and planning sooner, not later. In a recent interview , Coker said there are certain things you need to do to plan for your future health care needs and give comfort to loved ones.

Talking with loved ones openly and honestly—before a medical crisis happens—gives everyone a shared understanding about what matters most to you at the end of your life.

This starter kit created by The Conversation Project will help you begin the dialogue about your health care desires. It is a useful tool to guide you through the conversation.

New! Audio version: Ellen Goodman reads The Conversation Starter Kit (English). Listen now!

We’ve made this tool—and many others—available for free on our resources page.

You can also use a document like The Carolinas Center’s Isn’t It Time We Talked family guide or the Five Wishes document to begin the process of talking with others and declaring aloud “this is what I want.”

This may seem obvious, but it is also important to talk to your doctors about your health care choices. This guide developed by The Conversation Project provides help and support in having this conversation.

Then, it’s time to put words on paper.

Write it down.

After talking with loved ones about your health care choices, you need to choose someone who will speak for you if you are unable to speak for yourself.

You can do this by completing a South Carolina Health Care Power of Attorney form. This process is also known as choosing a health care agent, or proxy.

The Health Care Power of Attorney form is the most important advance care planning form—also known as an advance directive—that you can complete.

Print or view the S.C. Health Care Power of Attorney form. »

If you need help deciding on a Health Care Power of Attorney, or with any other part of the process, The Conversation Project’s has put together this helpful guide with information on how to choose a health care agent and/or serve as one for someone else.

There are other advance directive forms that can be used when a person is unable to speak for himself/herself, but most of those are specific to certain situations and/or lack the portability and comprehensiveness of a Health Care Power of Attorney.

For more information on other advance directives, see our Advance Care Planning crosswalk document (revised April 2020).

Things to consider.

Advance care planning is not a single conversation, or a one-time signing of forms, but is for you to live in a way that is meaningful to you, for as long as you live.

Remember:

You can ALWAYS change your mind, even after you put plans into writing.
Life changes. You should review your plans from time to time, to make sure they still express your wishes as your situation changes.

We recommend that you review your advance care plan once per year or after one of the 5 Ds:

A decade of life passes, as preferences change over time;
The death of a loved one, as this is time for reflection of ‘what matters most’;
A divorce, to revisit your selected health care power of attorney;
A serious diagnosis, so you may focus on the new goals related to your care;
A significant decline in your functionality.

This is an ongoing conversation and things may change over time. That is perfectly okay.

But once you have talked it over and completed the Health Care Power of Attorney form, you will be able to rest easier knowing your choices about your life will be carried out the way you want them.

Additional resources.

We have lots and lots of free resources available on our website. And we are always adding more.

Go here to view our patient and family resources, with various toolkits and documents to help with all three steps of the process. We also have a dedicated section for health care providers and industry professionals.

Don’t see what you’re looking for? No problem! Email us at info@mylifemychoices.org and we will do our best to get you the advance care planning resources you need.

Sharing is caring.

It cannot be emphasized enough that the advance care planning process is meant to be completed with those who are closest to you, including your medical team.

In addition to sharing your wishes verbally, you should also share your advance directives—especially your completed Health Care Power of Attorney form— with your loved ones and your doctors.

And then, we encourage you to share this process with others. Everyone can benefit from advance care planning. One great way to do that is to share this article with friends!

It’s your life, make your health care choices known. Start your advance care planning today. It’s never too early, until it’s too late.