Caring decisions: The Missouri End-of-Life Coalition helps people make important care decisions

When Susie Pekios thinks of her last moments on earth, she envisions herself looking out the French doors of her condo with her massage therapist on call, brownies baking in the oven, and a cold glass of Pepsi -- real, not diet -- in her hand. What do you envision for the end of life? As a member of the Missouri End-of-Life Coalition and chair of the Gateway Alliance for Compassionate Healthcare at the End of Life, Pekios specializes in helping families discuss hospice care, advanced directives, do-not-rescusitate orders and more.

"Our goal is for them to identify and communicate that so other people understand, respect and ultimately honor what those decisions are," says Pekios, a Cape Girardeau native who now lives and works in St. Louis. "We encourage people to do that way in advance of a health care crisis."

But Pekios, who worked for many years as a social worker at Southeast Hospital and then Southeast Hospice, found that these tough decisions are usually made once a health care crisis has already occurred, and they often don't take into account the social impact of the decisions.

"Between 80 and 93 percent of people say they would want to die in their own home with family and friends around them, and without pain," says Pekios. "More than half of our citizens don't get to do that because they haven't had a conversation with their family members, so they end up dying in a hospital or without the care of hospices."

Through her coalition involvement and her own business, Compassionate Conversations, Pekios teaches individuals, families, small groups and St. Louis-area agencies how to approach an end-of-life talk, make decisions and then communicate wishes with family members, attorneys and physicians.

"I ask them to paint a picture for themselves of what they would like their deathbed scene to look like for last weeks and days and hours," says Pekios. "I have them describe where they would be, who they would have with them, what it would be like. ... I encourage people to have these conversations early so they get used to the idea."

Many are shy about having that conversation or just don't want to go there in their mind, says Pekios. Others are worried about letting others make their life-altering decisions.

"We have the right have as much or as little care as we want," says Pekios. "You're not giving up your power. You're extending your power by making someone else the official honorer of your wishes."