Advance care planning: A path to peace of mind

If you experienced an illness or injury that left you incapacitated, would your family know what kind of medical care you’d want?

While you may assume the answer is yes, research shows that people are likely to incorrectly predict some of the end-of-life decisions their loved one would make.

Advance care planning can help eliminate this guesswork. It’s a process that involves thinking about, discussing and writing down what’s important to you — your values, goals and preferences for care in situations where you’re unable to share those preferences.

It helps ensure your voice is heard even when you can’t communicate — but that’s not the only benefit.

“Advance care planning creates this series of aha moments for people where they learn what really matters to them and those they love,” says Cathy Cooper, LICSW, a social worker specializing in palliative care at MultiCare Auburn Medical Center. “It’s a gift to both patients themselves and their family members.”

Why create an advance care plan?

It’s a common myth that advance care planning is only for people who have a serious illness or are near the end of life. Unexpected accidents or illnesses can happen to anyone. That’s why everyone 18 and over should have an advance care plan.

Here’s how creating a plan can benefit you and your loved ones.

Brings clarity

What makes life meaningful for you? What’s important to you about how you spend your days? What does quality of life mean to you? What health-related limitations could you live with?

Many of us don’t take the time to ask ourselves these types of questions, yet their answers form the basis for advance care planning. Once you clarify your beliefs, values and goals, it’s easier to evaluate how you might feel about specific types of medical interventions, like CPR, or life-sustaining treatments, like being put on a ventilator or receiving dialysis.

Provides a sense of control

It’s a natural human tendency to desire a sense of control in our lives, and that extends to the end of our lives, too. Advance care planning can help reduce some of the tension, discomfort and fear we feel about our own mortality by giving back some of that control.

“It can ease a lot of stress for people to be able to say, ‘Here’s what I want prioritized if this or that happens to me,’ or ‘This is how I want to live if I can’t make decisions for myself anymore,’” says Courtney Albert, ARNP, with MultiCare Pacific Northwest PACE Partners. “It can be a really freeing and empowering experience.”

Eases stress and prevents conflict

Making decisions about a loved one’s care when they’re incapacitated isn’t easy. It becomes even harder when you don’t know their preferences. Having to guess what kind of care someone would or wouldn’t want can cause significant distress for family members. It can also lead to conflict.

An important part of the advance care planning process is naming a health care agent — someone to make health care decisions for you if you cannot make them yourself.

If you don’t choose a health care agent, Washington state law has a hierarchy that determines who will make those decisions for you. In the case of a parent with no spouse, all adult children must agree on medical decisions. When family members don’t see eye-to-eye, it can strain relationships and lead to delays in care.

“On many occasions, I’ve seen families sigh with relief when their loved one names a decision-maker and makes their wishes clear to that person,” Cooper says. “It’s a huge burden off families’ shoulders.”

How to start the conversation

While the prospect of talking about advance care planning may seem daunting, it can help open lines of communication with your loved ones.

“Parents often have this misconception that they’re going to traumatize their adult children by talking about what they want at end of life, but that’s not true,” Albert says. “It’s actually enormously helpful for all involved, presenting opportunities for meaningful connection and helping to reduce the emotional burden for adult children in the long run.”

Here are some pointers for starting the conversation.

Acknowledge. Break the ice by acknowledging the difficulty of the subject matter. For example, you might say, “I know you don’t want to think about me dying, but it’s really important to me that you know what I would want while I’m clear and able to tell you.”

Turn to pop culture. Stories in the media — news, magazine articles, movies or TV shows that address end-of-life care in some way — can often provide a natural way to raise the topic.

“Parents often have this misconception that they’re going to traumatize their adult children by talking about what they want at end of life, but that’s not true. It’s actually enormously helpful for all involved, presenting opportunities for meaningful connection and helping to reduce the emotional burden for adult children in the long run.”

Consider functionality, longevity and comfort. Cooper recommends framing the conversation by considering three things: your functionality, your longevity and your comfort. Which is the most important to you and why? Knowing that hierarchy can help you make decisions about your future care.

Think about what you don’t want. Once you’ve established what’s important to you, consider what kinds of care you would not want. This can often yield a more productive discussion than focusing on what you do want, Albert shares. For example, if being independent and active is what matters most to you, and a medical emergency happened where you could not live that way, you may decide you wouldn’t want certain life-sustaining treatments.

Take it in small doses. The thought of having one lengthy conversation about advance care planning can be intimidating. That’s why Albert recommends the “small nibbles” approach — a series of shorter conversations held over time. It’s also important to revisit your advance care plan throughout your life because your wishes and preferences may change as you age. You may not want the same things at 75 that you do at 50, for example.

Ready to get started?

One way to get started with advance care planning is to read, discuss and fill out this durable health care power of attorney form (DPOA-HC). The form allows you to name a health care agent, explains what to consider when choosing someone for this role, and provides prompts to help you think through your values and preferences. Explore the article Advance care planning 101 for more information.