A look at the new field of palliative care

First in an occasional series.

Mary Tole, 74, a vibrant, independent woman until last spring, lay in an intensive care bed at Abington Memorial Hospital in mid-September. For six heartrending weeks, her family had watched as she spiraled downward - no longer able to recognize her daughters, control her bladder, or even swallow.

Her family now faced difficult choices, and doctors asked the relatives to meet with the hospital's palliative care team.

Mary Tole's family, like most Americans, had no idea what a palliative care team was, or what the meeting would be about. The family had heard the noise all summer in the media over "death panels" and "pulling the plug on Grandma."

Was that what this was?

One brother, Greg Smith, 53, of Glenside, didn't want to go to any meeting that morning, but his wife pushed him. "They're going to pull the plug," he worried, "and everything's going to be over."

Another brother, Bob Smith, 64, of Douglassville, Pa., feared doctors had called the meeting "to plan her final days."

Diane Dietzen, medical director of the palliative care team at Abington, led Mary's two brothers, two daughters, and a sister-in-law away from the sterile ICU and into a family lounge, where they sat in a circle, on a sofa and comfy chairs, as if in somebody's living room.

Dietzen shut the door.

The rise of palliative care

Ten years ago, palliative care teams were just beginning to form in a few American hospitals. This year, the 12-person team at Abington will hold 1,200 meetings with families like Mary Tole's.

Her story - and others in this ongoing series - will document life in one hospital at a critical time.

Health-care spending could soon cripple the country. President Obama and Republicans alike say the system is unsustainable, but after a year of sausage-making, they can't agree on legislation to fix it.

As Washington delays, many people who work in hospitals nevertheless know change is coming - and fast.

Abington, a large community hospital with 665 beds and 5,700 employees, lies smack in suburbia, and in many ways typifies a successful U.S. hospital.

It has flourished in the present system, adding a new wing almost every decade.

But admissions are down 8 percent in recent months, cuts of $3 million a month are being considered, and new chief executive officer Larry Merlis told the board last week that a drop in patients "appears to be the new norm" across the region.

Abington must grapple with new realities like everyone else. More procedures will be done outside its walls. More patients will get care at home. And more will come in without private insurance.

Palliative care is medicine's response to the dismal way people have died. One purpose is to help patients and families make hard decisions when facing chronic illness or death.

The end of life is also when the use and expense of health care soars. Medicare spent an estimated $143 billion in 2009 caring for people in their last year. That is enough to provide health insurance to 35 million Americans for a year.

One question palliative care raises is this: How many Americans would want the expensive, all-out assault of intensive medicine if they understood all their choices and likely outcomes?

Talking through a tough time

Before the family meeting, Dietzen read Mary's medical chart. She talked to specialists and the attending physician treating her, none of whom had ever assembled the family and given a complete picture of what was happening.

"Our goal is to do two things," Dietzen said, addressing Beth Anne Tole, 51, a daughter, who lived with her mother in Skippack, and assumed the role of primary decision-maker. "Help manage any pain your mother might be having, and talk about complicated situations. Get you answers to questions so you and your family can make decisions and go forward."

Bob Smith began by saying that he was told over the phone that his sister had a stroke last night, but that when he went down there, the nurse and doctor in intensive care said they didn't know anything about it. "To me, somebody screwed up somewhere," he said.