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Think Your Doctor or Family Knows What You Want? Don’t Count On It
When it comes to advance care planning, 80% of people actually know what it is, they just don’t do it. A surprising statistic considering the COVID pandemic was a brutal lesson on the importance of having an advance care directive in the event of a sudden health crisis.
One client’s daughter insisted her mother tell her what she wanted if something bad happened. Her mom’s reply: “You’ll know what I want, if something bad happens.” The reality was her daughter had no idea. She didn’t want to think about it, but she also didn’t want to make that decision if she had to.
Why do so many people not have an advance care plan? The biggest underlying reason is mistrust of the health care system, and not feeling that the health care system can follow through on their wishes. Then there are people who assume that their doctors or families will know what they want. That’s a risky gamble.
But it’s not just people who don’t take action. Often, health care professionals struggle with having advance care planning conversations, too. Talking about what someone wants at end-of-life is emotional and not everyone is equipped to do it.
One of the biggest misconceptions though is that advance care planning is only about the wishes you want at the end of life – “if I end up unable to speak or wake up from surgery, take me off life support.” As Kristin Stevens, RN, NP, and Supervisor of Lifespark’s Advance Practice Provider team points out, advance care planning goes beyond whether or not an individual wants to be put on a breathing tube. “Identifying end-of-life wishes is just a small part of a much larger discussion,” she said. “The core elements of advance care planning include contingency planning to prevent unnecessary ER visits and hospitalizations, and learning our members’ preferences for how they want to live their lives.”
In other words, advance care planning is about putting you in the driver’s seat, throughout your aging journey, and documenting what you want. Those ‘wants’ will change over time as health needs change, as your thoughts and perspectives change, as your situation at home changes – that’s perfectly fine. Perhaps you always counted on your daughter helping you, but she ended up needing to move to another state. That changes your care plan. At 65 you wanted heart surgery but now that you are 83, the idea of going under doesn’t seem as appealing to you. Life changes and advance care planning is less about death and dying and more about giving you choice in how you want to live.
Having the conversation now allows your wishes to be valued and honored if you can’t. “The best time to create a contingency plan is before there’s a health crisis,” said Kristin. “Our contingency plans aren’t that different from an asthma action plan for kids that uses the colors of a traffic light to indicate the medication, dose, and action, based on the severity of their symptoms,” Kristin explained. “For clients with heart failure, for example, their plan will include a goal weight range, and if they notice their weight is two pounds above or below that range, they know whom to call and whether they should take additional diuretics.”
When it comes to advance care planning, here are a few ideas to get you thinking:
Speak up and have a say in your care. Getting health care often involves choices that impact your life and wellbeing in different ways. Treatments only work if they work for you.
Start now thinking about what you want. Advance care planning puts you in the driver’s seat.
Talk to the people who matter most about the care you want. The more you speak up, the better your health care can be.
Tell your providers what’s most important to you. Don’t assume they know.
Document your wishes with an Advance Care Plan. People don’t want to have to remember what someone wanted, write it down so it’s crystal clear.
If you know you don’t want to go the ER for a chronic health issue, then make that known. If you were to break your hip and really don’t want to be in a rehab or Transitional Care Unit (TCU), write it down. Or if you are thinking about stopping a medication because it makes you feel sick and you’d rather have quality of life versus quantity, share that.
Doctors, providers, and even family should be part of the advance care planning conversation but how you live is ultimately up to you. Another piece of advice – don’t be afraid to talk about what you want.
