Dying with Dignity: Respecting choices with end of life care

Author: Mike Thompson, Anchor / Reporter, mthompson@wkbt.com
Published On: Nov 10 2011 09:54:53 PM CST  Updated On: Nov 10 2011 09:18:04 PM CST

LA CROSSE, Wis.--  Death is not something any of us like to think about, much less talk about with our loved ones.  But do you have a plan for the end of your life?  What happens if you get in an accident and you're not able to make medical decisions for yourself?  Who will make them for you?  Will they be the decisions you want?

These are all questions that are now being addressed through an advance care planning and La Crosse is leading the way.

It's a quiet fall afternoon and inside the Bielke home in La Crosse, a very intimate and personal conversation is taking place.  Gundersen Lutheran RN Jacqui Kartman says, "what's your understanding of your condition."

90-year-old Mel Beilke is talking with an advance care planning facilitator about his impending death.  His wife and son are also in on the discussion.  Earlier this year, Mel found out he has terminal lung cancer.  "To the best of my knowledge, there was no cure for this so it was a certain amount of finality.  It was like ok, I got this, this is the end," says Mel.

Coming to terms with his prognosis was the first step.  Now, Mel is making sure a plan is in place and his feelings are known about how to handle the care leading up to his death.  Mel says, "I think of people who wait and then they're faced with all of these decisions that they have to make, what do we want to do?  What do you suppose he would want us to do?  All these things that should be talked about ahead of time."

For Mel's family, the conversation isn't an easy one.  "It's very unsettling to talk about my husband's death, but at the same time, I feel almost pleased that we're going to do what he wants us to do," says Mel's wife Joyce.

The discussion about end of life care is very specific and the answers have very definite implications. "Do you want to stay home and die or hospice?," says Jacqui Kartman.

"If I'm not able to walk and talk, if I'm not able to know who I am or who I'm with then what would you want?  This generally isn't the first time people have thought about these kinds of things and that by using this interview format that we use, I think it helps ease people into the discussion of death," says Kartman.

30 years ago, the concept of advance care planning didn't really exist. Now over the the past two decades, La Crosse has built a program called "Respecting Choices" that has become both a national and international model.

"We repeatedly saw situations in our hospital where patients were desperately ill, probably not going to recover and we would turn to the family and say what would your mother or father want under the circumstance and the families would look back to us and say we don't know," says Gundersen Lutheran Medical Ethicist Bud Hammes.

In 2005, the Terri Shiavo case thrust the issue into the national spotlight.  The Florida woman had been in a vegetative state for 15 years.  Her husband said it was her wishes not to be kept alive by machines.  Her parents disagreed feeling she would someday recover.  After a lengthy legal battle, Terri's feeding tube was removed and she died 13 days later.

"It comes down to respecting human dignity, that people value life, they value how they live their life and also as they pass away from this life as to the process that's involved there," says Gundersen Lutheran Intensive Care Doctor Greg Thompson.

The Respecting Choices program is made up of three levels depending on where a person is in their care. The goal is to have a health care plan in place that respects the wishes of the patient.  Dr. Hammes says, "who would you want to make decisions?, when would a serious brain injury be so bad that the goals would need to change from your perspective? and are there any important personal beliefs you have that we should know about that would affect how medical decision might be made ."

The concept appears to be working too.  96 percent of people who died in a care facility in La Crosse County last year had some type of an advance care plan.  "In most places, even though a patient might sign a legal document, they often don't work, they often don't make a difference what happens to them, here it does," says Dr. Hammes.

Even though Mel trusts his family to do the right thing in his final stages of life, t's comforting for him knowing they're now aware of his decisions.  "It is very settling to me.  I feel this is the way I want it, my family knows it and there will be minimal confusion at that time," says Mel.

You can be 90 years old like Mel or you can be 30 years old.  You never know when something might happen.  In the case of someone younger, it's really important at the very least to have a health care agent or medical power of attorney who knows your wishes and can make medical decisions for you if you become unable to make them yourself.

Also, advance care plans or advance directives stay with you no matter where you get your care.  It's put into your electronic medical record and can be accessed anywhere, anytime so if you move, your new doctors will still have access to it.

WKBT-TV will be airing a special documentary Sunday, November 13th called "Consider the Conversation." It takes a closer look at multiple perspectives on end-of-life care.  It airs at 10:35 p.m. on WKBT-TV.

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