Hwi-Ja Canda practices what she preaches.
The 49-year-old Lawrence woman is a social worker at Lawrence Memorial Hospital, where she works with patients on developing advance directives instructions to doctors and family members on how to provide health care should a patient become too ill to speak.
Canda has made out her own living will on what measures should be taken and not taken to keep her alive if she becomes catastrophically ill or injured.
"I work in a health-care setting and I know the importance of that paper," she said. "By making it out, my family members will be in a position where they don't have to make choices for me they can respect the decisions I have made in advance."
Advance directives became popular in 1975, when the parents of 22-year-old Karen Ann Quinlan sparked a controversy by asking the New Jersey Supreme Court to withdraw life support from their comatose daughter. In a highly publicized, emotionally charged court battle, the court allowed for withdrawal of life support by appointing the father legal guardian and permitting him to make the decision on his daughter's behalf.
This landmark decision paved the way for the legitimization of living wills in most states, California being the first in 1976. Kansas passed its own version, the Natural Death Act, in 1979.
"Those documents are the way you take control of those times in your life when you can't take control otherwise," said Lawrence attorney David Brown.
Offering some clarity
Since 1991, federal law has required hospitals and nursing homes to ask all adult patients if they have written plans and to help them write them if they don't. That is where Canda comes in at LMH.
"Really, the basic bottom-line decision is, how do I want to die?" Canda said. "Or how do I want to live?"
Doctors agree directives can make things clear, even in a complicated and emotional time. Without them, family members are left guessing about critical medical decisions and when they disagree, physicians typically continue life support, often extending suffering for all involved.
Richard Sosinski, a Lawrence physician, said the living will is not automatically followed, because the document cannot anticipate every end-of-life situation.
"It is a piece of information a very important piece that allows you to work with families over what is to be done given the situation," he said.
But without that information, Brown said, families can sometimes argue with each other and with doctors over what is to be done. That can lead to costly litigation to get a court order to terminate health care.
Below are links to .pdf files of examples of living wills, from Lawrence Memorial Hospital:
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Lawrence Memorial Hospital will have a panel discussion on advance directives and planning for the end of life from 7 p.m. to 9 p.m. Thursday in the hospital auditorium, 325 Maine.
Panelists will include Dr. Richard Sosinski; social worker Laura Kaiser; the Rev. John Polk; Molly Wood of Kansas Legal Services; and Theresa Sykes, coordinator of skilled nursing at the hospital.
Here are some Web sites regarding advance directives and end-of-life issues:
- Partnership for Caring: Free, state-specific living wills at www.partnershipforcaring.org. Hotline: (800) 989-9455
- U.S. Department of Health and Human Services: Guidelines on advance directives at www.hcfa.gov/pubforms/advdir.htm
- Aging with Dignity: Five Wishes Living Will, legal in 33 states ($5 fee), at www.agingwithdignity.org
- American Medical Assn.: Booklet on advance directives at www.ama-assn.org/public/booklets/livgwill.htm
- American Association of Retired Persons: Order a state-specific advance directive guide, "Planning for Incapacity: A Self-Help Guide," by mailing order specifying the state with a $5 check payable to AARP Foundation, Room B4-240, Washington, D.C. 20049. Information on obtaining and completing advance directives also is available at www.aarp.org/endoflife
- Gundersen Lutheran End-of-Life: Programs that help health care providers implement advance directives in hospitals at www.gundluth.org/eolprograms
"You're talking about a time that is extremely stressful emotionally," he said, "and then to have to enter the court system is a strange new world."
A matter of control
The experts agree that living wills are effective because and when they motivate people to talk ahead of time with their families and doctors.
"You really need to do a good job telling people about this," said Lawrence attorney Charles Whitman. "Not just signing it and stick it in the closet."
Sosinski said he believes most of his patients have living wills in place at the end of their lives. Nationwide, however, nearly 80 percent of Americans die in a hospital or nursing home and half are unable to make informed choices near the end of their lives. Fewer than 25 percent of Americans have written advance directives before they become ill.
More people should do so, Brown said.
"I advise all of my clients to draft those documents and say exactly what they want," he said. "It's one way that people can take control. Otherwise, they leave those decisions to judges or other people who may or may not know what they really wish."
Next week: Different cultural views on death and dying.