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We've Come a Long Way, Daddy...

In December 1990 the United States Supreme Court established the landmark Patient Self Determination Act. This decision was made after years of court battles to allow Missouri's own family of Nancy Cruzan to make healthcare decisions for her. They were allowed to stop her tube feeding, thus honoring her previously stated wishes NOT to live in a persistently vegetative state. This allowed Nancy to die a peaceful death, which occurred 13 days later.

This act provides consumers the right to chose how much or how little medical care to have. It also provides for us to choose someone to speak for us if we cannot speak for ourselves. I call this person the official "honorer of the wishes". More officially that chosen person is called the Durable Power of Attorney for Healthcare Decisions.

My own involvement and journey into this realm stated in 1983 when I asked my 64 year old handsome, educated, dignified Daddy what he wanted for his own care at end of life. Daddy strongly resisted going to the doctor or hospital.

So when I asked him about his wishes for his own care at end of life, he cynically advised "Surprise me!" This totally shut down any further conversations about healthcare. Sadly he got his surprise only 2 years later when a massive heart attack thrust him into the emergency department where CPR was done 5 times. Dad spent the next 9 days, until his death, in the ICU on a mechanical breathing machine, a balloon pump forcing blood through body, and 17 different IV's, leads and lines. One now may tag this aggressive care as futile. Back then, we did not talk about those things so readily.


Over the next many years, I engaged my mother in conversations about what she wanted, and just as importantly, what she did not want for care at end of life. These discussions came during unplanned but opportune moments, such as after visiting very ill family members, or when watching a TV show that triggered the topic. It was a process, and I was up, very up, for this most important sharing of values, beliefs, and information. I saw the conversations as a GIFT Mom was giving her family. She even elected to make me the official honorer of her wishes. Nine months after a massive stroke, Mom died peacefully, in her own bedroom, pain free, with family at her side, with hospice. The experience could not have been more beautiful or more full of blessings.

Four years ago I did a happy dance – twirling, whirling and jumping up and down. A dream come true indeed. The National Healthcare Decisions Day movement – held April 16 each year – had begun. This event encourages all of to have these conversations, to give the gift our wishes, before that health crisis.

Please give your loved ones this gift – and encourage others to do so. Life Choices Advance Care Planning documents can be downloaded at the website, or contact us for more information.

From the Southeast Missourian Newspaper January 3, 2011

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, advance directives, do-not-resuscitate orders and more.

"Our goal is for people to identify and communicate so other people understand, respect and ultimately honor what those directions are", says Pekios, a Cape Girardeau native who now lives and works in St. Louis. "We encourage people to do what way in advance of a healthcare 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 one 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 LLC, Pekios teaches individuals, families and 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 life their deathbed scene to look like for last weeks and days and hours." says Pekios. "I have them describe where they would be, and 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 to 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."

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