November 14, 2024
Column

Terri’s gift – a community conversation

If you look carefully through the dust of the death of Terri Schiavo you see she left behind a wonderful gift for the rest of us: a table set for a hundred million conversations about what we would all want were we to some day lie in our own version of her bed. She left us the gift of conversation about care at the end of life.

We want you to join us for that conversation.

On May 11, from 6 p.m. to 9 p.m. at the Spectacular Event Center in Bangor, Eastern Maine Medical Center and St. Joseph Hospital will sponsor, with support from the Bangor Daily News, an evening’s discussion about care at the end of life. But not just anyone’s life; the two hospitals are inviting you to a conversation about the end of your life, and your loved ones’ lives. At the end of the evening they want you to be able to look across the table that Terri set, into the eyes of those you love, and say, “This is what I want you to do if that ever happens to me.”

The evening will not only provide you with the opportunity for this conversation, but the information and tools you need to make it a productive conversation. The first part of the “End of Life Workshop” will be short presentations by various experts in issues surrounding end-of-life care. They will include a nurse, a member of the clergy, a physician and an attorney. I will be the moderator; with a size six dress, too much hair and a lot of lipstick, I could be Joan Rivers asking you, “Can we talk?”

After the presentations and time for general questions, the rest of the evening will be devoted to the opportunity for those of you who attend to complete advanced directives (living wills), which will be available to all participants. Community professionals – physicians, attorneys, social workers and nurses – will be there to help you with questions and to help you complete your advanced directive. Notaries will be there so you can have your advanced directive notarized immediately. Staff with photocopiers will be present so you can have your advanced directive copied. One copy can be given to representatives of the local hospital where you usually receive your care, so they can make it part of your hospital medical record.

The idea is that you should be able to walk into the workshop and get everything you need to walk out with a completed advanced directive in your hands, and a copy on file at a hospital for the day you need it. Because some day, you will need it, and almost as importantly, someone you love will need it. Some day that someone will have to decide what care you would want, and will wish you could speak out at that moment. They will wish you could tell them, so there would be no chance they could be wrong in making the most important decision of the rest of your life. If you join us on May 11, you will be able to speak out at that moment, through the device of your advanced directive, and your family’s memory of the conversations you all had before you filled it out.

Used properly, an advanced directive is a device that allows you to give the gift of peace of mind to those who must make decisions when you cannot speak vocally to guide them. It allows them to look into the eyes of your memory in their heart and say, “I did what you wanted me to, because you told me what you wanted and because I love you.”

An advanced directive can, for example, answer the potentially wrenching issue of whether you would want a feeding tube if you could not feed yourself and would die without one. In doing so, the advanced directive and your conversations make use of Terri Schiavo’s spotlight on the feeding tube as a particularly emotional issue for families, another gift from her to us.

An advanced directive cannot anticipate every wrinkle of every decision at the end of life, it may not answer every question or salve every painful decision that must be made on your behalf, but it comes a lot closer than trying to guess what you may or may not have wanted. At its best, it prevents the salt of controversy about what you would have wanted from being rubbed into the wound of your illness in the hearts of your family. It does so by shifting burdens of decision and preference from what others would want for you or think you would want to what you have asked for. Who would not wish to leave such a gift of clarity and peace of mind to their family?

As you consider the invitation, please do not make the mistake of thinking it is only a workshop for the oldest generation. This is also an evening for late teens and anyone any age on up. The most difficult decisions for families are often those involving the care of the young, such as the head-injured teenage driver now in a vegetative state, or the 35-year-old with cancer. I will be asking my daughters, ages 18 and 21, what they would want, and they will be asking me what I would want.

That is another of Terri’s gifts; she taught us again that living wills are not just for the elderly.

So join St. Joseph Hospital and Eastern Maine Medical Center at 6 p.m. Wednesday, May 11 at the Spectacular Event Center at the table that Terri set for us. We will celebrate life while having conversations about its end, and you can bring home the gift of an advanced directive for you and those you love.

Erik Steele, D.O., a physician in Bangor, is chief medical officer of Eastern Maine Healthcare Systems and is on the staff of several hospital emergency rooms in the region.


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