NEW YORK – Terri Schiavo (search) is not the first person to have a feeding tube removed, although the public may be left with that impression because of intense media attention and her parents' emotional pleas to have the tube reinserted.
But getting an accurate picture of how often this procedure or stopping other forms of life support takes place in the United States is extremely difficult, partly because of privacy concerns.
No national or state statistics exist on the number of patients removed from life support each year. FOX News contacted more than 12 public and private organizations and agencies in search of this number and confirmed that such data is neither tracked nor recorded.
What officials can say is how many people depend on a feeding tube to stay alive.
In 2003, the most recent year for which statistics are available, the National Center for Health Statistics (search) reports that 146,000 procedures were performed to insert permanent feeding tubes into patients. According to the Brain Injury Association, there are between 35,000 and 40,000 people diagnosed with being in a persistent vegetative state — the same diagnosis that Terry Schiavo’s parents dispute.
These statistics, however, can offer only a glimpse into just how many families may be struggling with decisions regarding keeping a loved one alive through artificial means.
“It’s not an uncommon occurrence,” said Jon Radulovic, vice president of communications for the National Hospice and Palliative Care Organization (search). Radulovic said that anecdotal evidence culled from doctors, families and other health care professionals confirms that “thousands and thousands” of patients are removed from life support each year.
Hospital officials concur, characterizing life-support-removal decisions as everyday occurrences that rarely spark public — or even private — controversy.
"It happens all of the time, you just don't hear about it," said Amanda Engler, director of communications for the Texas Hospital Association. Engler said thousands of patients are removed from life support in Texas each year, either as a result of decisions reached by family members and doctors or because of the patients' own advanced directives or living wills.
"It's just like every other medical decision," she said.
The available statistics seem to bear this out. For example, thousands of people are connected to forms of life support other than feeding tubes, such as respirators and ventilators, each year, and it can be concluded that some percentage of those patients will be among those removed from life support.
But just as it is impossible to know how many patients with permanent feeding tubes have them removed to facilitate death, it's impossible to know how many patients placed on respirators were done so temporarily for conditions from which they will recover, or how many will also be removed in a decision to end life support.
There are no laws, government agencies or private groups either compelling hospitals to report these events nor asking them to volunteer the information. For example, the data collection systems at both NCHS and the American Hospital Association do not even ask the question.
"It's not part of what the state requires in standard reporting," said Kim Steit of the Florida Hospital Association. Steit said the issue of recording these events came up about a decade ago in discussions of tracking mortality rates but that the information was too difficult for hospitals to record in the current reporting system.
"There's no way you could collect this sort of data. It happens on such a daily basis," said Elizabeth Sjobert, a registered nurse and attorney who helped craft the 1999 Texas Futile Care Law, the legislation that allowed doctors last week to remove Sun Hudson, a terminally ill 6-month-old infant, from life support against his mother's wishes.
Asked why there wasn't more interest in this information — or in revising reporting systems to make it easier — experts in the medical and health care fields, as well as the data people at government agencies, cited privacy concerns for families and patients, as well as a lack of medical relevance.
“You very much run into privacy issues,” said Tom Burke, director of public affairs for the American Health Care association, a professional association for nursing homes. Burke said his group tries to track legal issues and litigation associated with right-to-die issues but must rely on anecdotal reports from facilities. “When we try to talk to someone at a nursing home, the administrators are very reluctant,” he said. “These are private matters.”
Tiffany Himmelriech, a spokesperson for the Ohio Hospital Association, said the main goal of hospitals is to work with families and patients to decide what's best. "If it's not something required in reporting, they have no reason to record it," she said.
Experts also said that the number of patients removed from life support every year does not provide any useful medical insight in terms of understanding disease or treatment.
Medically, people do not die from life-support removal, they die from heart disease or cancer. Death certificates do not list "Removal from life support," or "car accident" or "drug overdose" as official causes of death. Death certificates say "heart failure" or "cardiac arrest."
Mary Jones, a spokesperson for the NCHS, said the government wants to know the number of specific procedures performed, how widespread disease is, mortality rates for specific diseases and conditions. They do not connect procedures or diagnoses to specific patients, Jones said.
"Having a tube removed is an action, not the illness or cause of death," Radulovic said. "Those are the statistics that are important, that help us understand disease."
But if the information is useless from a medical standpoint, does the lack of it raise a public policy question?
When the Florida Legislature and Congress enacted emergency legislation in response to the Schiavo case — legislation in effect to save the life of a single person — without knowing how many individuals and families they would be affecting, lawmakers had no way of assessing the ramifications and consequences of the legislation.
Even in Texas, where the furor and outrage over Sun Hudson's death brought national scrutiny to the state's futile care law, official records are not kept.
Though the law requires hospitals to convene ethics panels to determine patient treatment, it does not contain a reporting requirement. While individual hospitals would have records of the meetings convened by the ethics panels that determine patients' treatment, "there is no repository" for this information, Sjobert said.
Since Texas enacted the futile care law in 1999, Engler said she knew of only four cases, including Hudson's, where decisions to end life support resulted in disputes or litigation.
Because of Schiavo, the public has become much more familiar with issues surrounding the painful issue of removing life support. And it's likely other cases will enter the public's consciousness.
This week, the Pennsylvania Supreme Court will hear the case of John P. King, a 74-year-old man whose wife and daughter disagree about honoring his living will and removing his feeding tube. Experts say that the rash of cases in the media are aberrations. Doctors, patients and their families, they say, make these decisions quietly every day.