Part 4: Advance Directives—Personal Perspectives

In our previous blogs, we talked about the importance of having an Advance Directive, offered conversation starters, and addressed some myths, common misconceptions, and the truth about Advance Directives. In this blog, we’re sharing personal perspectives on the topic.

Certainly, the COVID-19 pandemic has heightened public awareness of how quickly and suddenly a loved one’s health can deteriorate, but whether this awareness has encouraged more people to complete an Advance Directive isn’t clear. What we do know is that there are many reasons besides COVID that motivate individuals to document and share their medical and end-of-life wishes.

To gain a deeper understanding of what prompts people to create an Advance Directive, we asked several adults, ages 54–89, to share their personal experiences. We learned that while each person came to this task for a different reason, all felt strongly that it was—and is—the right thing to do for themselves and for their families.

Here are highlights from those discussions.

Peter (60), was inspired by his mother who had written down her wishes before she got sick. “What my mom did eliminated any potential strife between family members and allowed us to just be present for her,” he said. “Knowing what she wanted made the experience so dignified.” However, what finally prompted Peter to create his own Advance Directive was open heart surgery at age 50. “I didn’t want my family to have to decide for me,” he added.

Peg (71), wrote her first Advance Directive at age 60 as a requirement before having major surgery. When she and her partner got together six years later, they both revised their directives, naming each other as their healthcare proxy. “I’ve been blessed to care for a number of friends and family members at the end of their lives,” said Peg. “So talking about death has always been easy for me.”

Phyllis (89), decided she needed an Advance Directive after her husband died at age 76. “Jerry wrote one when he was diagnosed with lung cancer, but even without one, I knew he didn’t want to be hooked up to tubes and machines,” she said. “I have a DNR [Do Not Resuscitate] taped to my fridge, but I have no idea where my directive is!” (Later, Phyllis sent us a text saying this conversation spurred her to track down her directive.)

Sarah (54), a registered nurse who has worked in transplant, med-surg, and diabetes care, wrote her Advance Directive when she was in her mid-40’s. “As a healthcare professional, I’ve seen how hard it is on families when their loved one hasn’t made their wishes known,” she said. “I didn’t want my family to have to go through that if something happened to me.” Sarah was also motivated by her mother who recently died of Alzheimer’s disease. “My mom was also a nurse, so she already had an Advance Directive in place before her diagnosis,” she said. “That made things much easier for us during a really tough time.”

Adelle (65), and her husband were motivated by the pandemic and the memory of her father’s experience to complete their Advance Directives. “Years before he got sick, my dad had insisted on ‘all life-sustaining treatment,’ but when he woke from his coma and realized he would be on a ventilator for the rest of this life, he seemed horrified,” she said. “I decided that unless there was a reasonable chance that I could fully enjoy my life, please let me go.” In her Advance Directive, Adelle wrote her wishes for her memorial service: “Pray, be kind to one another, be happy for me, wear bright colors (especially orange), and enjoy the luncheon!”

Rose (79), worked as hospital social worker until she retired at age 75. “I’m embarrassed to admit this, but even though I spent my career helping patients talk to their family members about their end-of-life wishes, I didn’t have an Advance Directive until shortly before I stopped working,” she said. At the time, she and her husband chose each other to be their healthcare proxy, but now that his health is failing, Rose has decided to appoint her “ultra level-headed attorney daughter” as her proxy.

Diane (83), created an Advance Directive prior to surgery some 18 years ago. She originally designated three of her children as her healthcare proxies but plans to change that to the one daughter who lives with her. We asked Diane whether her kids were open to hearing her end-of-life wishes. “Absolutely! We’ve been through family therapy together and three of us are in 12-Step recovery programs,” she said. “Talking is what we do!”

Visit Honoring Choices Minnesota to find information, videos, and downloadable forms for creating an Advance Directive. To connect with Lifesprk resources, contact us at 952-345-0919 or ShineOn@Lifesprk.com.