When it comes to where people in the U.S. die, there has for years been a gap between what people want and what usually happens.
Most Americans would rather die at home. But only one third actually do, according to the Centers for Disease Control and Prevention's National Hospital Discharge Survey. Many more die in hospitals or nursing homes.
Legislation awaiting Gov. Pat Quinn's signature would move Illinois along the path in closing that gap, supporters of the effort say.
The bill would expand a medical order called POLST, for physician orders for life-sustaining treatment, that's been available in Illinois for a little more than a year. Such orders are increasingly being used across the country to let seriously ill people direct the kind of care they get at the end of their lives.
Unlike an advance directive in which patients express their wishes for care in the event of serious illness or injury, POLST is a medical order that must be followed. The form is aimed at those who are seriously ill or the extremely frail elderly who are likely to die within the year.
A recently released study in Oregon, where the POLST program was developed in 1991, found that such orders work. Of patients who requested that, if their conditions worsened, they be given only comfort measures and not be transferred to the hospital, only about 6 percent died in the hospital, according to the study published in the Journal of the American Geriatrics Society.
Among those without a POLST order, about 34 percent died in the hospital. Their wishes were unknown, but it's perhaps telling that the majority, 66 percent, of people who had state-registered POLSTs chose comfort measures only.
The results are "absolutely breathtaking," said Dr. Mark Siegler, director of the MacLean Center for Clinical Medical Ethics at the University of Chicago. "This may be the best kind of advance directive for end-of-life care that's come along."
The study showed that with POLST, "people are far more likely to get what they want" in terms of end-of-life care, said Dr. Susan Tolle, director of the Center for Ethics in Health Care at Oregon Health & Science University, who helped design the POLST program and was a senior author of the study.
POLST directives also allow patients in frail health to request aggressive care.
"This is not just about restricting life-sustaining treatments. This is also for people who want to make sure they get what they do want," said Dr. Julie Goldstein, section chief of clinical ethics and palliative medicine at Advocate Illinois Masonic Medical Center and executive lead of the POLST Illinois Task Force.
Though POLST is less known than advance directives, like living wills and powers of attorney for health care, increasing numbers of Illinois residents have been filling out such forms since an initial version was added to the statutory "do not resuscitate" order in March 2013.
The bill, passed by the legislature on May 30, makes several alterations to the state's first POLST form.
"The (new) form provides an opportunity for discussion about other options that the original form did not make clear, such as IV solutions, feeding tubes, pain medications and maybe hospice treatment," said Jack Fleeharty, division chief of the Illinois Department of Public Health's Division of Emergency Medical Services.
It also gives physicians' assistants, advance practice nurses and some senior medical residents the power to sign the directive, in addition to physicians. Expanding the list of practitioners who can work with POLST is a good idea because they are often the ones who have more time to talk with patients, Fleeharty said.
The bill, and POLST itself, was opposed by the Illinois Family Institute. Such a crucial order should only be signed by a physician, said lobbyist Ralph Rivera. And "we have concerns with the form itself, that it is not protective enough," he said. "The form is more about withholding treatment."
POLST gives patients three general options for their end-of-life care: Comfort measures avoiding transfers to hospitals; limited interventions of basic medical treatments and transfers to hospitals if indicated but avoiding intensive care; and full treatment including a transfer to a hospital or intensive care unit.
The order also lets the patient make requests involving resuscitation in the event of cardiac arrest, the use of a ventilator, and artificial nutrition and hydration. The order is revocable at any time.
These decisions are intended to follow a detailed talk between the patient and a trained clinician.
"The form is just the form. The concentration needs to be on the conversation," Goldstein said.