SAN ANTONIO (June 4, 2009) — Less than a quarter of U.S. adults have spelled out end-of-life wishes in an advance directive or legally appointed someone to make health care decisions if they are unable to do it themselves. A bioethicist at The University of Texas Health Science Center at San Antonio wants to change that.
Craig M. Klugman, Ph.D., an assistant director at the university’s Center for Medical Humanities & Ethics, has created a Web site – www.TexasLivingWill.org – that not only has the forms needed to complete an advance directive but also walks Texans through the process, step by step.
“As a clinical ethicist, I have encountered many families with relatives who are in the hospital in persistent vegetative states or at the end of their lives – and the families have no idea what decisions to make,” Dr. Klugman said. “Our goal is to help people give a gift that enables families to know what loved ones would have wanted and to take away any guilt about making a wrong decision.”
While advance directive forms for any state – including Texas – can be found on the Internet, they are generally written in legalese. It’s rare to find an interactive Web site that explains in plain language how to fill out the forms, although Dr. Klugman previously created one for the state of Nevada, where he taught bioethics at the University of Nevada, Reno.
TexasLivingWill.org is fully bilingual, an acknowledgment of Texas’ sizeable Spanish-speaking population. One in three Texans speaks a language other than English at home, according to the U.S. Census Bureau. Overwhelmingly, that language is Spanish.
Accordingly, the Web site allows users to fill out an advance directive in Spanish and then print it in either language.
TexasLivingWill.org includes a number of forms to help Texans in their health care planning:
• The Directive to Physicians and Family or Surrogates Form helps people communicate their wishes regarding medical treatment in case there comes a time when they cannot make their wishes known due to a terminal illness or an irreversible condition.
• The Medical Power of Attorney Form allows people to give someone else the authority to make health care decisions on their behalf in the event that they are no longer capable of making those decisions themselves.
• The Out-of-Hospital Do Not Resuscitate Form allows people with terminal or irreversible conditions to refuse resuscitation measures when they are outside of a hospital setting.
• The Declaration for Mental Health Treatment documents decisions about mental health in advance in case a court someday decides a person is unable to make such decisions.
The most commonly completed forms are the Directive to Physicians and Family or Surrogates Form and the Medical Power of Attorney Form; each requires signatures from two competent adult witnesses to be valid. They can be completed without an attorney, although people may wish to seek legal counsel on this and other aspects of an estate plan. The other two forms are filled out only under specific circumstances.
TexasLivingWill.org also has a feature called “My End of Life Wishes,” which is not legally binding but is designed to help people discuss how they hope to die – where they want to be, who they want with them and what state of mind they hope to be in.
“Rather than talking about specific treatments, this gives you an idea of what somebody would have wanted in a more philosophical sense,” Dr. Klugman said. “None of us are likely to die according to the scenario that we have envisioned, but at least this lets others know what you value and what’s important to you when the time comes.”
Once an advance directive is completed, Dr. Klugman recommends having signed copies in as many places as possible. There is no private health information in an advance directive, he said, only names and a person’s desires. And it’s important that people can find the documents when they are needed.
Dr. Klugman has his own advance directive posted on his Facebook page. He also recommends giving copies to spouses, adult children, parents, physicians and attorneys, among others. And TexasLivingWill.org stores unsigned copies, in case people cannot find their signed copies or want to make changes.
The Web site is sponsored by the Center for Medical Humanities & Ethics, as well as the Ecumenical Center for Religion and Health. It received funding from AT&T.
There are a number of reasons why so few Americans have advance directives. Some people are not sure where to find the document. Others are unsure how to complete it, or they are simply uncomfortable thinking about their own deaths. Dr. Klugman hopes to overcome some of these barriers with TexasLivingWill.org.
“Hopefully, this will lead to conversations now that will prevent difficulties later,” Dr. Klugman said. “I have seen families split in half trying to decide what a loved one would have wanted. For years afterward, they don’t speak to each other. We don’t want that to happen.”
The University of Texas Health Science Center at San Antonio is the leading research institution in South Texas and one of the major health sciences universities in the world. With an operating budget of $668 million, the Health Science Center is the chief catalyst for the $16.3 billion biosciences and health care sector in San Antonio’s economy. The Health Science Center has had an estimated $36 billion impact on the region since inception and has expanded to six campuses in San Antonio, Laredo, Harlingen and Edinburg. More than 25,600 graduates (physicians, dentists, nurses, scientists and other health professionals) serve in their fields, including many in Texas. Health Science Center faculty are international leaders in cancer, cardiovascular disease, diabetes, aging, stroke prevention, kidney disease, orthopaedics, research imaging, transplant surgery, psychiatry and clinical neurosciences, pain management, genetics, nursing, dentistry and many other fields. For more information, visit www.uthscsa.edu.