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Honoring Choices Wisconsin

One Family’s Story

At the dinner table: Family engages in end-of-life conversation

Amanda Milford and family friends Mike and Ginger Goral share a laugh. The three were among 11 who gathered together for dinner April 10 and a conversation about their end-of-life wishes.The smell of marinara sauce and garlic wafted in the air, glasses clinked for a pre-dinner toast and a family began a conversation about their end-of-life wishes.

On a Friday night in April, James Milford, MD, and his wife, Karen Narloch-Milford, hosted a unique dinner for family and friends in the Madison home of their son and daughter-in-law, Jackson and Michelle Milford.

That night the close-knit group of 11, ranging in age from 19 to 60, took part in what is known as advance care planning—the process of understanding, reflecting on and discussing future medical decisions, including end-of-life preferences.

Over dinner the group spoke honestly about what they want—and don’t want—if they are ever in a situation where they can’t speak for themselves. Going around the table, each one reflected on their values and life experiences. The advance care planning process draws out a number of perspectives on what gives life meaning.

Karen Milford’s outlook on life is that every day is a gift. Her father’s death at the age of 49 taught her that.

“It was my week of finals and my college graduation and a month before I got married, and I can’t begin to tell you how much that single event has shaped my entire adult life,” Karen said, her voice cracking with emotion.

Michelle Milford, 25, spoke about the last two years of her grandmother’s life, which was marked by Alzheimer’s—a slow deterioration of the mind as well as the body. It’s why Michelle does not want to pursue aggressive medical treatments if she is ever in that situation.

“I don’t want to be a burden and you could tell from those two years she was uncomfortable—so uncomfortable—and on top of that she didn’t know who we were,” said Michelle, as she fought back tears. “Everyone to her was a stranger.”

Ginger Gorel, 60, a longtime friend of the Milfords, shared a different perspective. Her mother has Alzheimer’s, but Gorel doesn’t see it as a curse. To her, it’s still a life.

“She’s not the same as when I was growing up. She doesn’t really know me or know anyone, but she’s happy,” Gorel said. “She’s in a nursing home with full nursing care and she’s really just very content and happy, so to me that’s value.”

Harder for Gorel to deal with, however, was when her father died of leukemia. He was in round-the-clock hospice care for weeks. Gorel and her sisters were there every day, caring for him through it all.

“I was with my dad every day for several weeks and I thought ‘I just don’t want to know all this detailed medical stuff’,” she said.

“You want to be the daughter, not the caregiver,” Karen Milford said.

“Exactly,” Gorel replied. “If I’m that sick, I want other people to take good care of me, and I want my loved ones by my side, but I don’t want them to change my catheter.”

Renae Milford, 22, said being physically able to do things was not as important as the mental capacity to enjoy the things she does now in life—like watching a sunset. Her father, Dr. Milford, said he wants that for himself, too—watching one last sunset on the family farm—but his desire to not be a burden on his family at the end outweighs everything else.

“Do I need to be totally cognitively there? No. Do I need to be able to get myself to a pretty pasture to watch a sunset? No, not necessarily. But I don’t want to be a burden. I’ve given my life to giving, and I want to continue to do that to the end,” Dr. Milford said.

As the night’s conversation came to a close, the group talked about who they would choose as a health care decision maker, also known as a health care agent. They also made a plan to write down their wishes in a legal form called an advance directive, with the intention of getting together again a month later. It is recommended that people engage in multiple conversations about their future health care decisions with their loved ones. Advance care planning is not a static process. In fact, it can change throughout a person’s life.

Speaking candidly about their end-of-life wishes that night, the Milfords and their friends set their advance care planning process in motion.

For additional resources on advance care planning, including the advance directive form, please visit: www.honoringchoiceswi.org.

The name “Honoring Choices Wisconsin” is used under license from Twin Cities Medical Society Foundation.