Advance directives for end of life

Sunday, August 30, 2009

By Susan Neal Pekios

As a "death counselor," I would like to respond to Charles Krauthammer's Aug. 21 column "The truth about death counseling."

I have worked in health care since 1981 as a medical social worker and as a hospice social worker. While I have studied end-of-life issues over the last three decades, my recent graduate studies at Saint Louis University allowed me to specialize on the function and utility of living wills and durable power of attorney for health care decisions, advance directives and advance care planning, as well as the historical crossroads from law, medicine and psychosocial aspects of real life.

I also serve on the Missouri End of Life Coalition, am president-elect of the St. Louis chapter of the Gateway Alliance for End of Life Care and have been instrumental in consumer education for the National Healthcare Decisions Day, April 16 annually.

I received specialized training in respecting choices through Gunderson Lutheran Medical Foundation in LaCrosse, Wis. I own Compassionate Conversations LLC, where I provide education on advance care planning to professionals and consumers and work at Pathways Community Hospice in St. Louis.

While I have seen the good, the bad, the ugly and the beautiful deaths in and out of hospitals and hospices, I would like to be a town crier for education about options at end of life and about the importance of conversations with the people who matter the most to us. Those who talk about their end-of-life wishes truly give others a gift, as they will not have to guess what would have been wanted. Those who have the conversations are glad they did so. Those who did not often regret it later as they live on in doubt as to whether they did the correct thing for their dying loved one.

Mr. Krauthammer speaks some truth yet leaves many things unsaid. I offer the following truths as education to the public:

True: If one presents for medical treatment and has the capacity to make decisions, he will be asked and can state which treatments he does and does not want.

True: People in the U.S. have the Patient's Right to Self Determination as determined by the Supreme Court and enacted in 1991 as an outcome of Missouri's own Nancy Cruzan case. People can chose how much and what medical care they want or do not want.

True: "Advance directives" is a name of the two aspects we commonly refer to as the "living will" and the "durable power of attorney for health care decisions." People can update and change their advance directive at any time.

True: Living wills alone are often too vague or too specific to correlate to the presenting problem or treatments offered at the time of need. Living wills are enacted only at the time that someone is imminently dying. The format is a list of options: Would you want to have CPR, be on a ventilator, have surgery, antibiotics, artificial nutrition and hydration or receive blood transfusions or dialysis to keep you alive?

True: An agent/proxy who is named in advance via the durable power of attorney for health care decisions can speak for the person who no longer has the capacity to speak for himself when it comes to health care decisions. Naming this person to speak for you if and when you cannot speak for yourself is more beneficial to a health care provider than a piece of paper with your wishes alone. You should tell your agent what your wishes and values are.

True: Advance care planning is the process of talking to each other about our values and how this plays into our wishes for care at end of life. It goes beyond the above documents and stresses the importance of having conversations with our loved ones, health care professionals and ministers about our wishes. It provides education and is not limited to palliative or hospice care.

End-of-life care planning is important, yet we often spend more time planning a vacation or writing up a grocery list. The recent health care bills provide payment for doctors to do the minimum in bringing up the basics and letting people know their options. With the Patient Right to Self-Determination, the decision is with the consumer.

Susan Neal Pekios of St. Louis is a hospice social worker for Pathways Community Hospice in Chesterfield, Mo. Previously, she was a medical social worker for 25 years at Southeast Missouri Hospital in Cape Girardeau.<I>

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