Patients, staff react with sadness, anger to loss of two Rice outpatient programs

WILLMAR -- For Nathan and Ann Fjerkenstad, the letter couldn't have come at a worse time.

Their 1-year-old daughter was diagnosed with type 1 diabetes in August, and the family was still on a steep learning curve about managing her disease.

Then they were notified that Rice Memorial Hospital's outpatient Diabetes and Nutrition Center is closing this month, a victim of hospital budget cuts.

"It just kind of rocked me," Ann Fjerkenstad said. "We depend so much on the Diabetes Center. I was extremely angry. I felt like the rug had been pulled out from under us."

Reactions are ranging from sadness to anger as the Diabetes Center and the hospital's outpatient congestive heart failure clinic prepare to close this coming week. The last day for the two programs is Thursday.

The city-owned hospital announced last month it was ending the programs in order to stem financial losses. The budget cutbacks, which also include reduced staff hours in other hospital departments, amount to $3 million.

Nearly 500 patients -- 390 in the diabetes program and 90 in the congestive heart failure program -- are directly affected.

The two local medical groups, Affiliated Community Medical Centers and Family Practice Medical Center, are looking at how to fill the gap when these two chronic-disease management programs come to an end.

But that hasn't stopped patients, families and staff from being deeply upset.

"We've been hearing a lot from patients," said Aimee TeBrake, the clinical nurse specialist in charge of the congestive heart failure clinic.

"They're saddened," she said. "They're anxious. They're feeling dumped. Many of these patients have been with me a long time. There's been a long-standing relationship."

Deb Lippert, clinical coordinator of the Diabetes and Nutrition Center, fears her patients are losing a critical resource.

"Some of these people are really scared," she said.

The Diabetes Center and heart failure clinic provided education and day-to-day management for patients with chronic disease -- particularly those who were newly diagnosed and those in need of more intensive supervision.

Lippert, who has been with the diabetes program since it started in 1986, said chronic disease has "a profound effect" on patients and families.

"Managing a disease is done by a well-educated individual and their health care team," she said. "They need to learn what to do and how to do it. ... It is an important part of helping someone take on a challenging chronic disease and manage it well."

The Fjerkenstads, who live in Boyd, aren't new to diabetes. Nathan Fjerkenstad has had type 1 diabetes since he was 3.

That didn't make it any easier, though, to learn their daughter, Eliana, has it too.

Ann Fjerkenstad said the first few times she had to draw up an insulin syringe, her hands shook. The staff at the diabetes center have been a lifeline, she said.

"When you have a trust in somebody, you rely on that. You just feel so much more comfortable knowing you're going to get answers to your questions," she said. "They've researched for us. They've made calls."

Now, the family is worried and uncertain.

On Lippert's advice, they traveled to the Twin Cities this past week to meet with an endocrinologist.

Ann Fjerkenstad said they'll continue bringing Eliana and her 5-year-old brother, Elijah, to their pediatrician in Willmar.

"We feel confident that he'll send us where we need to go," she said.

But the couple isn't sure where they'll be able to turn when questions and problems arise.

"There's so much to learn and we're just at the very beginning," Ann said. "When you talk to somebody on the phone nearly every day and now you don't have that -- we're going to miss that resource."

Lippert is concerned too, especially for children and pregnant women with diabetes whose disease can be harder to control.

"There are not the experts available immediately in this community to manage that," she said.

TeBrake wonders how her congestive heart failure patients will continue to be cared for.

The average age of these patients is 80, she said. Most are taking multiple prescription drugs and many of them have additional problems such as pulmonary disease or kidney failure.

"There's no like care to transition to," she said. "Our emphasis has been not on crisis management but on prevention. We're going to go back to a crisis mode if we don't have a team approach in place. I think the burden will fall back on the medical community and they are already burdened. Our doctors are very busy and there's a physician shortage. We were there to support physician practice."

The effects of losing the two programs are likely to be far-reaching, she said.

"These programs were very integrated into the way we do health care," she said. "There's a ripple effect and we haven't reached the last ripple yet."

She and Lippert said they didn't know their programs were on the chopping block until the morning of Aug. 21, the day the budget cuts were announced.

Hospital officials have said quality of care wasn't an issue. Both programs rated high in clinical quality and patient satisfaction. The congestive heart failure clinic, which began in 2000, was named an innovative patient service of the year by the Minnesota Hospital Association in 2004.

Ultimately, it came down to reimbursement -- or rather, inadequate reimbursement for the type of chronic disease management the two programs specialized in.

"There's a huge disparity between what patients value and what third-party payers value. Essentially that's what killed us," TeBrake said.

Neither program ever ran at a profit, even with previous budget cuts. Two years ago, the Diabetes Center reduced its nurse, dietitian and support staff hours to save money. Earlier this year, both the Diabetes Center and the heart failure clinic were asked, along with the rest of the hospital's departments, to trim 4 percent from their budgets.

"We know that this is definitely a needed service," said Lynn Stier, department director at Rice Hospital for the two programs. "Reimbursement is challenging. There are some things we have no control over."

She credits both the local medical clinics for coming forward to try to fill the gap.

"They stepped up very quickly," she said. "I strongly believe patients will be taken care of. It's just that the program will look different than it does right now."

TeBrake said she also holds optimism that, with some redesign, the services might be able to continue.

"It's a hard thing to swallow, it truly is, and yet I have hope for the future," she said.