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Controlling the End of Your Life
At life's most frightening time, planning and advocacy can give you the final say over doctors and relatives. Bioethics Law Project shows you how.
Pictured L to R are Rena Taylor,
Marnie Poncy and Libby Spillane.
Terry Shiavo's very public death illustrated just how difficult it is to determine your course of medical care without legal documentation. The lengthy court battle that ultimately decided Terry's fate happened for two reasons: Terry's wishes were undocumented, and she had a husband who legally could and parents who wanted to advocate quite differently on her behalf.
Four years ago, before you could talk about Terry Shiavo and your friends and family knew her case well, the Legal Aid Society began the Bioethics Law Project, designed by Marnie R. Poncy, R.N., J.D., to address the burgeoning unmet need in Palm Beach County for patient self determination at the end of life. When it comes to end of life determination, you don't know what you don't know, so education and preplanning is critical. Through the Bioethics Law Project, Poncy teaches consumers of all ages, cultures and economic means, as well as medical staff and legal professionals the benefit of making end of life decisions before a crisis.
Preplanning was crucial to Melonie, a single mother whose aggressive form of terminal cancer required that she make important decisions about her medical care and guardianship of her precious nine year old daughter, Anna. To assist Melonie, the Bioethics Law Project drafted a specific End of Life Plan of Care that stated her desire to fight the cancer with experimental drugs if possible and to refuse anything but a curative plan, because of Anna. Melonie then planned for Anna's secure placement with guardians she had selected in the Pre-Need Guardian Appointment drafted by the Project in the event of her death. Melonie was a loving, responsible mother to the end and, with guardianship planning, her love for Anna continues beyond her own life.
Whether your wishes are in a legal advanced directive, like Melonie's, or spoken to a spouse or relative, as Terry had, often intervention and advocacy remain necessary at the end of life. That help is especially critical for the single, friendless, and incapacitated elderly, noted Poncy.
"These are people who are completely alone at one of the most vulnerable times of their lives. They fall prey to continued care oftentimes because it is financially advantagiuos for the healthcare provider regardless of benefit. No one can make the decision for these patients to stop unproductive effort. No one can sign them into palliative care or into Hospice," said Poncy. A recent case helps illustrate the Bioethics Law Project's role.
Peggy gave Marnie Poncy an oral directive. She did not want a feeding tube placed in her abdomen and she did not want to go to the hospital. She wanted to go to Hospice. The nursing home refused to accept her oral directive. It was only upon the Bioethics Law Project's threat of a battery claim if the nursing home administrator persisted on transferring Peggy to the hospital prior to receiving court permission for Hospice that her wishes were honored.
"Two women, two directives, two end of life plans of care realized," said Poncy.
You can receive more information about upcoming educational presentations, or schedule a presentation on issues surrounding end of life care and incapacity, by calling project representative, Georgene Eisenberg, at 655-8944 ext. 253.
Bioethics Collaborative for End of Life Education, Outreach and Advocacy serves community with Quantum Foundation funding
Marnie Poncy and her staff in Legal Aid's Bioethics Law Project accomplish important work on issues of patient rights, health care provider duties, facility responsibility and risk management. The Project is now part of the Bioethics Collaborative for End of Life Education, Outreach and Advocacy, generously funded with a $450,000 grant from the Quantum Foundation and administered by Legal Aid. The Collaborative includes Hospice of Palm Beach County, Inc., Hospice by the Sea and the Palm Beach County Medical Society. The Bioethics Law Project began with three year's funding from the Palm Health Care Foundation.
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