Friday, March 7, 2008

Ensuring your end-of-life wishes

Ensuring your end-of-life wishes

Electronic registry - Oregon's groundbreaking POLST forms will go online by 2009

The Oregonian Staff

It's a recurring nightmare for frail people in distress and the workers trained to rescue them:

A patient near the end of life -- whether from old age or a life-threatening illness -- and with strong wishes about life-prolonging medical treatment, goes into cardiac arrest. Somebody calls 9-1-1. Paramedics arrive and start unwanted treatments because the unconscious patient can't speak up and they have no other medical orders.

A pink form called POLST originated in Oregon to help solve that problem and prevent undesired medical intervention.

POLST -- Physician Orders for Life-Sustaining Treatment -- grew out of talks started in 1991 by emergency medical crews, long-term caregivers and the Center for Ethics in Health Care at Oregon Health & Science University.

Since Oregon adopted POLST more than a decade ago, 14 states, including Washington and Idaho, have followed suit, along with parts of California. More than 1 million POLST forms have been distributed in Oregon. POLST is now offered by every Medicare-certified hospice and nearly every nursing home in the state.

Now OHSU is trying to take POLST to the next level by building a computer registry of POLST patients in the Portland area. Like the POLST form itself, Oregon's registry stands to become a national model.

With an electronic registry, paramedics and other emergency medical workers would be able to call a central hot line at OHSU to find out immediately if a patient had a POLST form and, if so, get access to its medical orders.

In one out of four cases, an OHSU survey found, the ambulance crew cannot find the POLST form in time to act on it.

"The problem with paper is that it's not always readily available," says Dr. Terri Schmidt, an emergency medicine specialist, medical supervisor for American Medical Response in Clackamas County and assistant director of the OHSU ethics center.

POLST holders are commonly advised to stick the pink form on the refrigerator, but some balk.

"Think about that," Schmidt says. "Do you really want a big pink piece of paper with instructions for what you want at the end of life right there on your refrigerator?"

Without a registry, proponents say, having a POLST form is no guarantee of having medical wishes carried out.

As a case in point, they cite Elizabeth Hirsch, who died at age 88 in the intensive care unit at OHSU Hospital.

Hirsch is known to many Portlanders for her long involvement in the community. Among other things, she came up with the idea of adding a red bulb at Christmastime to the nose of the leaping neon deer in the White Stag Manufacturing Co. sign at the west end of the Burnside Bridge.

A sad system failure

Hirsch, who lived alone in her Southwest Portland home, had a POLST form. Hers specified that she wanted comfort care, but not more aggressive measures such as cardiopulmonary resuscitation, or CPR, or a ventilator.

One night in 1999, Hirsch collapsed at home with abdominal bleeding. Her visiting sister-in-law found her on the floor and called 9-1-1. Paramedics went straight to her bedroom and never saw the POLST form on the fridge.

"I don't blame them one bit for not scurrying around the house looking to see if there was a POLST form," says Bob Conklin, Hirsch's son, who was in Italy at the time.

The ambulance crew revived Hirsch's heartbeat. But instead of taking her to Providence St. Vincent Hospital, where her doctor worked, the ambulance was diverted to OHSU Hospital, and she wound up in the intensive-care unit, unconscious and on life support.

"Her wishes were not respected," Dr. Susan Tolle, director of the OHSU ethics center, says. "She died in an ICU with machines all around her -- after things were done to her that she felt would be undignified."

Hirsch never regained consciousness.

"It wasn't what she wanted," Conklin says. "Her wishes weren't carried out -- through the fault of no one."

Touchy issue of costs

Conklin says he thinks the POLST registry will not only keep patients from going through aggressive treatment they don't want, but also will save money.

"You don't want these things to be cost-driven, but you don't want to ignore the issue of unnecessary cost either," he says. "Think of the costs incurred for things done to people who don't want them done."

Dartmouth Medical School researchers estimated last year that Medicare could save $8 billion a year in hospital costs if the entire nation followed Portland's pattern, including POLST-like wishes regarding intensive care of the chronically ill.

The question of cost savings is a touchy one that Tolle sees as a mixed blessing. She opposes a mandatory POLST system, fearing a possible public backlash if states adopt a POLST registry to save money rather than to honor individual choice.

"This is not Big Brother," Tolle says. "It's about respecting you as an individual and what your wishes are."

Oregon's POLST registry will be voluntary and paid for by private donations. Emergency medicine specialists and ethicists will monitor the results and report back to the Oregon Legislature and the Health Fund Board that oversees statewide health-care reform.

Electronic backstop

POLST forms carry more medical clout than other advance directives because the patient's doctors sign them. "These are medical orders, and that makes them remarkably useful to EMTs in the field who need orders," Tolle says.

Most people fill out a POLST form to request something in between the all-or-nothing extremes of emergency medical care. They want what Tolle calls "the easy things" done: comfort care, pain relief, medications that can be taken by mouth. They don't want more aggressive and invasive treatments such as feeding tubes, CPR, ventilators and an ICU stay.

The target date for full implementation of the registry is Jan. 1, 2009, allowing time to build and test the system's database and a fail-safe backup. Start-up costs, about $200,000, are covered by donations, including a gift from the Greenwall Foundation.

"We're building a model no one else has ever built, and we can't make a mistake," Tolle says. "We can't have a single case of undertreatment, so we have to test this thing to death."

Don Colburn: 503-294-5124

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