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End-of-life Discussions Provide Peace, Closure

Saturday, August 13, 2011

By Jean Bonchak

Debbie Elko, Hospice of the Western Reserve Patient

As a nurse for almost two decades, Debbie Elko of Claridon Township witnessed firsthand the turmoil families must deal with when a terminally ill loved one is unable to provide directives for their end-of-life wishes.

So Elko was determined not to impose that same burden on her family, after she was diagnosed with lung cancer last year, which has metastasized to other parts of her body.

With the assistance of Hospice of the Western Reserve headquartered in Cleveland, Elko has completed her advanced directives, had long, meaningful conversations with her family and continues to share memorable moments.

She has expressed her desire to stay at home throughout her illness, but understands if it becomes necessary to be placed in an assisted facility.

At a recent family gathering it was obvious that her family holds a close bond.

Marybeth Fuhrmann, Elko’s daughter, said she was relieved that her mother discussed her wishes.

Her son, Mike Butt, agrees.

“We know what she wants and we dare not do anything else,” he said with a gentle laugh.

Daughter-in-law Tina Butt, who also works in the medical field, said that she has known people who were unable to provide their end-of-life wishes because of their illnesses and families were left not knowing what to do.

“It’s one of those basic components of human nature that we want to think that … life is ever-present,” said Hospice of the Western Reserve Chief Executive Officer William E. Finn. “The trick is to realize we’re talking about taking control of your life and creating a road map for your dreams and goals up until you die.”

According to the U.S. Agency for Healthcare Research and Quality, less than 50 percent of the severely or terminally ill patients studied had an advance directive in their medical record.

Researchers at the University of Michigan in Ann Arbor found that among 4,000 individuals over age 60 almost one-third would eventually become too incapacitated to make the necessary decisions regarding medical treatment at the end of life. But among them, nearly all of those with a living will requesting limited or comfort care only ultimately did receive such care at the end of their lives. And those patients who specified all care possible were far more likely to receive aggressive care than those who did not request it.

In July, Hospice of the Western Reserve launched a campaign as part of a multi-faceted approach to raising awareness for talking about and planning for the end-of- life.

“Courage in Conversation: A Personal Guide” is a booklet provided by Hospice that contains legal forms and answers to frequently asked questions.

For those hesitant or reluctant to discuss the often sensitive subject, Finn suggests a story-telling approach.

For example, a person may relate a story about someone they knew who died without leaving directives and the confusion and family hardships that ensued. Or, a child may express their own end-of-life wishes to a parent. These types of discussions may open doors for loved ones to ask questions and perhaps lead to pursuing advanced directives.

Difficult and emotionally charged situations may be avoided if done while healthy and not in the immediacy of need.

“There’s a tremendous unburdening of the family when health status changes because they’re not scrambling to determine what mom or dad wanted,” Finn said. “They’ve taken care of that ahead of time.”

He added that the most frequent comment heard regarding lack of planning is “if only I had known sooner.”

Elko offered the following advice: “Don’t wait until a crisis happens,” she said, “you just never know.”

For more information or help with advance care planning and end-of-life discussions, call Hospice of the Western Reserve at 800-707-8922 or visit


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