Workshop to explore living wills

BANGOR – Most Americans say that when the time comes, they want to die at home, resting comfortably and surrounded by the people they love.

But the sad reality is that many of us end our days in a hospital or nursing home, alone and in pain. In some cases, we may not be allowed to die a natural death, but are trapped for months or years on life-support measures we may never have wanted, kept alive by well-meaning relatives who can’t bear to pull the plug and let us go.

Bangor area residents who want more control over their end-of-life experiences should mark their calendars. On the evening of Wednesday, May 11, they can attend a free public presentation and do-it-yourself workshop to learn about the issues, leaving, if they wish, with a personalized living will in their hands – witnessed, notarized and ready to take effect when it’s needed.

The community event is a collaborative project sponsored by Eastern Maine Medical Center, St. Joseph Healthcare, Ikon Copiers and the Bangor Daily News. The workshop will open with a panel discussion of legal, medical, ethical and spiritual considerations of end-of-life care. Participants will have an opportunity to ask questions before getting started on filling out their own documents. Legal forms will be available at no cost. Lawyers, clinicians, clergy members, notaries and others are donating their time and will be on hand for personal consultation.

Dr. Erik Steele, chief medical officer at EMMC, said in a recent interview that the public’s interest in living wills has been piqued by the case of Terri Schiavo, a brain-injured Florida woman who died March 31 after a prolonged public debate over whether her tube feedings should be discontinued.

“Her case highlighted how truly devastating this issue can be. She shined a light on it in a dramatic way,” Steele said. “The way to avoid that kind of tragedy is to have this conversation.”

The conversation Steele has in mind is a deep one – one too few people have with their loved ones. What do you love most about your life? If you could no longer enjoy those things, or even recognize they were going on around you, would you want your life to be artificially prolonged? Do you see a distinction between a machine that breathes for you and a tube that delivers water and nourishment? Who do you trust to make decisions about your care if you can no longer make or communicate them yourself? If you were to stop living, do you want your organs to be made available to someone who needs them?

Answering these intensely personal questions and others like them may allow individuals and their families to face the inevitable transition of death with greater peace and dignity. With difficult decisions already made, Steele said, families and friends can make good use of precious time instead of arguing over end-of-life care.

“These are very contentious issues that can divide a family during one of the most challenging times they’ll ever face,” he said. Advance directives can be changed at any time, Steele added, so there’s no need to worry about having second thoughts.

Across town at St. Joseph Healthcare, president and chief executive officer Sister Mary Norberta agreed. “Modern medicine has come so far, and there’s so much we can do now,” she said. “The question is, how much do you want to do, and when do you want to stop and let nature and the Lord take their course?”

Sister Norberta noted that some Catholics and others with strong religious beliefs may face an additional challenge in making end-of-life decisions because church doctrine may specify which treatments are allowed or required. These people should have frank discussions with their clergy, she said, adding that organized religion provides few black-and-white answers to medical dilemmas. For example, she said, in some situations, the Catholic church may consider a feeding tube an “extraordinary measure” that may be discontinued if a patient or his agent chooses, but in other circumstances, its withdrawal might be unacceptable.

Like Steele, Sister Norberta said families who take the time to prepare advance directives and name a personal health care representative often reap the benefit of a more peaceable transition at the end of life. Families who put off making these important decisions may find themselves wrestling with unresolved conflicts just when they most need to be supportive of each other.

“These divisions can fracture family relationships for a long time into the future,” Sister Norberta said.

Both Steele and Sister Norberta emphasized that advance directives are not just for the elderly. Younger adults and even teenagers can be the victims of accidents, crimes and illnesses, Steele said. If they have not made their thoughts clear, their grieving families can be faced with the hardest decisions of all.

Lest parents hesitate to raise the issue with their children, Steele pointed out that adults routinely offer guidance on other difficult topics such as sexual behavior and substance abuse. In school, he said, teens are exposed to presentations about car accidents and other tragedies, and many have experienced the death or injury of a friend or classmate.

“If we think kids aren’t already dealing with serious issues, we’re probably mistaken,” he said.

Participants at Wednesday’s event may either leave with a completed advance directive or take the materials home to complete later. Copies of completed documents may be left with one or both of the two sponsoring hospitals.

The end-of-life workshop will take place 6 to 9 p.m. Wednesday, May 11, at the Spectacular Event Center, 395 Griffin Road, near the airport in Bangor. The event and all materials are free, and preregistration is not required. Advance directive forms also can be downloaded at www.emmc.org.

Information may be obtained by calling Dawn Simpson, EMMC social work manager, at 973-7841.