Schiavo case turns spotlight on hospice care
One positive aspect of the long public vigil and debate over what would happen to Terri Schiavo, who died in hospice care on March 31, 2005, after more than a decade of living in a persistent vegetative state, was that more people decided to complete living wills, according to media reports.
However, living wills, medical power of attorney, do-not-resuscitate (DNR) orders, and advance directives have limitations. Some health care providers say the ideal solution resides in a physician’s order form developed in the 1990s by a multidisciplinary task force of the Center for Ethics in Health Care at Oregon Health & Science University in Portland.
The form, called Physician Orders for Life-Sustaining Treatment (POLST), is a simple way to let doctors and emergency responders know precisely which life-sustaining treatments a person desires.
"Living wills are not effective for many people because all they address is what you would want done if you were in a persistent vegetative state," says Milton Zadina, MD, of Columbus Family Practice Associates in Columbus, NE. Zadina spoke about the POLST at the Living a Good Life at the End-of-Life conference, held March 29-April 1, 2005, in Lincoln, NE. The conference was sponsored by the Nebraska Hospice and Palliative Care Association and other health care organizations.
"DNRs are not helpful when you have to make a decision about feeding tubes and ventilators," Zadina says. "But the POLST form goes into these in a little more detail and provides a good understanding about how aggressive a patient wants you to be."
Some health care providers fear that the public attention paid to the Schiavo case will continue to haunt the medical community, moving it backward toward the time when even dying patients routinely were put on feeding tubes and life-sustaining technology, regardless of what they might have wished.
"I’m afraid they’re going to extrapolate her case to people who are terminal, and they will begin to take us back to where we were 10-20 years ago when we had to put tubes in people to feed them when they were terminal from cancer and heart failure," says Edward Vandenberg, MD, CMD, an assistant professor of geriatrics at the University of Nebraska Medical Center in Omaha.
If public and political sentiment do lead to setbacks in end-of-life care, then the POLST form could be a powerful way to prevent the use of aggressive curative measures when these go against the patient’s wishes.
As a family practice doctor who works in geriatrics and is the medical director at two nursing homes, Zadina often has been called to make emergency decisions about the care received by people in nursing homes when their regular physicians were unavailable. "Sometimes things would come up based on whether the person should be in the hospital or how aggressive their treatment should be, and I didn’t have any information to guide me," Zadina says. "We couldn’t find their medical power of attorney, and they’d have only a chart DNR order, but nothing else."
On several occasions, Zadina ordered care that was more aggressive than what the patient and family wanted because no one was able to communicate the patient’s desires to him. "So, I was interested in finding something that would help me know what the patient wanted," Zadina says.
He found his answer in Oregon Health & Science University’s POLST form. The university encourages the form’s use and adaptation, and has made information and a sample form available on its web site at www.polst.org. "I looked at it, and it had all the information that would be really helpful and useful in making sure a patient’s care was directed in the way the person would like it to be directed," Zadina adds.
Zadina had been working on bringing the POLST form to his community for a couple of years by the time Terri Schiavo’s end-of-life care became a national and political issue. "The Terri Schiavo story just happened to coincide while we were doing this," he says. "But if Terri Schiavo had had a POLST, there probably wouldn’t be any question about what she wanted."
While anyone could use the POLST, the form is most helpful to elderly people and people with chronic illnesses, say Zadina and Lisa Weber-Devoll, CSW, BSW, a social worker with the Columbus Community Hospital and Hospice in Columbus, NE. Weber-Devoll also spoke about the POLST at the Living a Good Life at the End-of-Life conference.
People who are dying from cancer or another debilitating illness, people who have a serious chronic illness that repeatedly lands them in the hospital, and people who are in nursing homes are among those who would benefit most from the POLST, Weber-Devoll says. "The POLST form is designed for people who have some kind of chronic illness or an illness that is expected to take their lives," she says.
The form answers some questions that other medical directives do not, including a question about receiving antibiotics, Weber-Devoll notes.
There are cases when people at the end stage of cancer or Parkinson’s disease choose not to receive antibiotics for treatment of pneumonia because that would extend their lives, and they’re ready to die, Weber-Devoll says.
In the Columbus community, which has a little more than 20,000 people, Zadina and Weber-Devoll have convinced local hospitals, nursing homes, physicians, and other providers to encourage patients to complete the form and keep it in the front of the patients’ charts. For people who are living at home, the forms could be kept on the refrigerator, where emergency medical responders would easily be able to find it, Zadina says.
"We hope that at least 45 percent of the people in nursing homes will have a POLST in place within a year or two," Zadina says.
"In our community, we have a number of trained counselors or POLST preparers, besides the physicians," Weber-Devoll says. "We have trained social workers and other individuals in the hospital, and the next training session will include people in doctors’ offices and a dialysis center."
The two-page form takes about 30 minutes to complete. Although it’s short, patients will need time to ask questions and hear about potential scenarios regarding the use of life-sustaining equipment, Zadina says. "We go through each section of the POLST form and discuss, for example, what CPR is and what happens to a patient who undergoes CPR, and what are the benefits and burdens," he adds.
Counselors will present statistics on the success of various procedures, Zadina notes. "When we talk to patients about CPR, we might tell them, You have to code 29 80-year-olds to get one long-term success,’" he says.
Columbus providers have received permission from the Oregon group that created the POLST to adapt it for use locally, Weber-Devoll says. "Nebraska had done an end-of-life survey report where they interviewed a number of individuals and came up with what people know about hospice and advance directives, and that motivated us to follow through with this program," Weber-Devoll explains. "We investigated how the form pertained to Nebraska’s laws, and we changed some of the wording."
What high-profile cases like Schiavo’s fail to show is how individuals and families weigh the burdens and benefits of life-sustaining treatment, Zadina says. "There are certain situations where there’s good evidence that a feeding tube isn’t a helpful intervention," Zadina says. "One example is advanced dementia, where there’s evidence that doing hand-feeding and encouragement can do just as well as a feeding tube for people at the end of Alzheimer’s disease."
Also, the use of POLST provides counselors, nurses, and doctors with an opportunity to teach patients and their families about aspects of end-of-life care in a way that they would never understand from watching television reports about Schiavo’s deaths.
"Dehydration is one of the most humane deaths; it’s not painful," Weber-Devoll says. "Just removing a feeding tube doesn’t mean you are withholding food and fluids; you’re still offering them if the person can take them by mouth."
Weber-Devoll says her job with the POLST is to advocate for patients that they have the right to make decisions for themselves. "Everyone has the right to decide what type of life-sustaining medical interventions they prefer. It is all based on what the person views as their own quality of life," Weber-Devoll says. "There are many factors that influence how a person views their quality of life—personal values, religious foundation, and progressive medical services."
The POLST provides people a very clear way to describe their desires, she notes. "By not communicating—both verbally and in writing—these wishes, it could mean leaving these decisions up to family, physicians, or even the legal system," Weber-Devoll says.
Living wills, medical power of attorney, do-not-resuscitate orders, and advance directives have limitations. Some health care providers say the ideal solution resides in a physicians order form developed in the 1990s by a multidisciplinary task force of the Center for Ethics in Health Care at Oregon Health & Science University in Portland.
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