Advance directive: From pajamas to end-of-life decisions

"Those easier kinds of questions then lead us down the road to what does it mean to have a quality of life."

By: Carson Walker .

Helen Brunner
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With the deaths of both parents and her husband, Collette Carlson saw firsthand how advance directive help ease some of the stress when loved ones can no longer make medical decisions on their own.

Now, as a Sanford Health executive, she helps couples and individuals walk through the process of planning what often becomes the end of life. Those conversations include major decisions like what level of medical care people want to receive but also smaller things like music playlists that can add comfort at a time when that’s often in short supply.

“I want to be on a ventilator if they can turn it around. I want to make sure my feet are warm. If possible, I want to wear my own pajamas. I want to look presentable. I don’t want to wear a hospital gown. I don’t want people to see me if I have facial injuries, just my family,” Carlson said of some of her own wishes.

Carlson was actually the first in her family to fill out an advance directive after a breast cancer diagnosis. She ultimately recovered, but it prompted discussions with her immediate family about their own plans.

“In the three events, I have no regrets, none, with my husband and parents — the decisions we made and the treatments they received and when they chose not to have treatments,” said Carlson, 60, executive director of surgical services for Sanford Health in Bismarck, North Dakota.

“I think that has made it easier for me to talk to families,” said Carlson, who helped launch Sanford Health’s advance care planning program because of her experience.

Emotional but worth it

Helen Brunner, of Bismarck, said she and her husband filled out an advance directive at the suggestion of their Sanford Health primary care physician, Khalin Dendy, M.D.

The process involved meeting with a representative and filling out paperwork that was notarized, saved with their medical records and given to their three adult children.

“It was pretty easy. It asks basic questions,” said Brunner, 62. “They said you can always change it later if you weren’t certain about it. You filled out what you were pretty sure about it.”

The couple kept it simple and talked about it beforehand.

“You don’t have to be on the same page, but it helps answer the questions faster. It is a little emotional,” Brunner said. “It’s something you don’t want to think about it. But once you do it, you’ve got it and don’t have to think about it. It’s something you should do for each other’s sake and your kids’ sake.”

Start with easy questions

Carlson said conversations about an advance directive ideally start with a person’s primary care provider. Sanford Health also has numerous advance care planning resources online that take away some of the mystery.

Though spelling out clearly the big decisions like whether someone wants to be resuscitated or kept on life support, the conversation usually starts with smaller choices and often includes details about one’s memorial service — sometimes down to the menu.

“Those easier kinds of questions then lead us down the road to what does it mean to have a quality of life,” Carlson said. “For most of us, the fear we have is not being able to make those decisions. That document is not written in stone. As we age and our health changes, we may find ourselves changing our desires about end of life. This document can be updated.”

Even if someone’s not sure if they want to go through with the process, it helps to make an appointment to learn about their options and obligation to have those conversations with family members, Brunner said.

“You can celebrate their life once you’ve done everything that they wanted us to do, even though that couldn’t extend their life. You allowed them to carry out their decisions and their desires. Whether it’s a terminal disease or a shocking event, accident or an expected death or something like that, I think knowing you’ve done everything you can for that person you’ve loved and cared for is an important feeling. You know you’ve been true to them.”

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