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“I Could Have Been With Him at the End”

The scene outside the hospital room was chaotic and heartbreaking.  Deb Vorenkamp was struggling to articulate what she thought might be her husband’s last wishes as doctors and nurses rushed into his room in a desperate effort to stabilize him.

Tragically, Deb’s husband of 17 years passed away before she was able to re- enter the room to be by his side.  Although Franz Vorenkamp had been receiving treatment for esophageal cancer, unexpected complications had overcome him much sooner than he and Deb had expected.

He died a month before his 48th birthday.

Deb Vorenkamp with a photo of her husband, Franz

Throughout their marriage, the Vorenkamps had not seriously discussed what should be done in the event one was unable to make end-of-life decisions. There were some broad statements made over the years, but nothing specific and nothing in writing.

When Franz was diagnosed with cancer, no one on the hospital’s medical team (not SJMHS) had brought up the subject until it was a life or death decision.

“We as a profession have to do a better job for the patients we care for,” said Deb Vorenkamp, a Faith Community Nurse Liaison at St. Joseph Mercy Ann Arbor. “Not having a plan in place cost me dearly. I was out of the room when he died.”

The pain of that day in 2003 drives her passion to educate SJMHS associates on the importance of talking with loved ones about an Advance Care Plan (ACP) and documenting their wishes within an Advance Directive, a legally binding document stating end-of-life care decisions. The discussion is the most important part.

Vorenkamp and fellow associate Julie Seitz who is the program leader of the ACP program at SJMHS, educate physicians and associates about how to be proactive with both their patients and their own loved ones. They have held classes at St. Joseph Mercy Ann Arbor, Livingston and Saline, as well as numerous presentations at local churches. Vorenkamp also has spoken to med students at a University of Michigan health care ethics class.

End-of-life care is a topic most people - including health care professionals - would rather avoid.

“There’s a fear in our culture of talking about death,” Vorenkamp said. “It scares people to talk about what might happen to children, parents, spouses. It’s awkward to imagine the worst when our loved ones are healthy.”

Most people get car insurance and health coverage; why not end-of-life-care assurance?  “It’s about having a necessary discussion with people in your close-knit circle who need to know your wishes,” Vorenkamp said.

All too often, the loved ones of patients without an ACP quarrel about making difficult decisions. The anger and indecision only compounds the tragedy.

“Whether healthy or ill, completing an Advance Directive is not synonymous with giving up, it’s far from that. It is your voice of what you want, and don’t want,” Vorenkamp said.

“Our goal is to make Advance Directives part of the basic health questions, and to create a culture where people do not freak out when the doctor helps you think about how to honor and respect your choices for end-of-life care.”

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