Budgeting Care For One Of America’s Most Expensive Patients

First in an occasional series

STOUGHTON, Mass. — A small, thin woman, tucked in the corner of her cream-colored couch in Stoughton, is one of the country’s most expensive patients.

“I’ve had MS [multiple sclerosis] since I was 18 years old,” says Sue Beder, 65, as she begins to tell her story. “My husband passed away when he was 37, leaving me with two children. It was hard, but my parents were a big help. I’ve always had a lot of doctors.”

Beder recently signed up with an agency that will try to improve her health while working under a budget, sometimes called a global payment. (We’ll track Beder’s care for her first year in this plan.) As more and more patients are covered by global payments, Beder represents the future of health care in Massachusetts. And, if health care on a budget doesn’t work for high-cost patients such as Sue Beder, it may not make sense for any of us.

‘I Always Needed The Ambulance To Get Me Up’

Patient Sue Beder, left, and Senior Whole Health nurse Judy Tremblay (Martha Bebinger/WBUR)

Patient Sue Beder, left, and Senior Whole Health nurse Judy Tremblay (Martha Bebinger/WBUR)

On a hot day last summer, Beder, hunched behind her walker, shuffled to the car of her home health aide. They drove to the Stoughton Fire Department.

“I got cookies for them,” Beder says, smiling with delight. “They’ll come any time, they really will, if you need them.”

Beder offered the cookies as thanks for the roughly 40 trips firefighters made to her home over the past year. Beder’s emergencies — a few of which sent her to the hospital — started with a seemingly simple problem: She couldn’t get to the kitchen to pour herself a glass of water or get food.

Beder brushes back wavy brown hair as she speaks. Her curled hands move a lot. But those hands, weakened by 47 years of multiple sclerosis, can’t hold a knife to chop food into small pieces she can swallow without choking.

Many days, Beder would not eat until her 93-year-old mother or a home health aide made dinner for her. If she stood up to walk to the kitchen or bathroom, she often wouldn’t make it.

“I’d be standing here trying to walk to the bathroom and I would just fall,” she says, describing the days before she signed on with her new agency. “I would call my children, see I have the Lifeline, thank God, and they were getting angry with me.” Beder pauses and purses her lips. “They [my sons] wanted me to go someplace, but I’m happy here. This is my home. So, I always needed the ambulance to get me up.”

Firefighters responding to Beder’s 911 call would check for injuries, pick her up off the bathroom or kitchen or living room floor, clean her up, and place her in a chair where she would go back to waiting for dinner.

Crafting A Minute-By-Minute Plan

CLICK TO ENLARGE and compare spending for Sue Beder. (Aayesha Siddiqui for WBUR)

CLICK TO ENLARGE and compare spending for Sue Beder. (Aayesha Siddiqui for WBUR)

“Right away within the first five minutes of meeting Sue I knew that things had to change,” says Judy Tremblay, a nurse manager with Senior Whole Health in Cambridge.

Tremblay remembers arriving at the front door of a neat, two-bedroom home last fall. She knocked and called for Beder. “She told me to come in. Her voice was sort of far away.” Tremblay discovered Beder in the bathroom, unable to pull up her pants.

Tremblay helped Beder to a comfortable chair and launched an investigation of the home. She looked for scatter rugs, electrical cords, clutter on the floor, passages that were too narrow — anything that might explain why Beder was having frequent falls.

“Is it equipment, is it drug-related, is it dizziness or weakness? Why is she falling? What can we do to stop this?” Tremblay remembers asking herself as she looked around the house and got to know Beder.

Tremblay must figure out why Beder is among the 5 percent of patients whose expenses add up to half of the $2.6 trillion Americans spend every year on health care.

She tells Beder she can hire more help and that Tremblay will make sure the aides can meet Beder’s specific needs. Tremblay’s nurse creates a minute-by-minute plan for Beder’s care: five minutes a day for grooming, 10 minutes for dressing twice a day, 30 minutes for shower, and on and on.

Tremblay’s mission is to see if spending more money up front — on handrails in the bathroom, better home care, taxi rides to the doctor’s office, and many more services — will help Beder stay healthy and help the government save money on her care.

“We keep people out of hospitals and nursing homes,” Tremblay says.

A Global Payments Gamble

But Tremblay and Senior Whole Health are taking a gamble. They’ll try to provide all of Beder’s care for 20 percent less than what Medicare and Medicaid were spending on Beder before she signed up with the agency. That was roughly $7,000 a month. In return for taking this risk, Senior Whole Health, in an unusual arrangement, gets a lump-sum payment from the two government programs. The agency decides how best to spend money on Beder.

Senior Whole Health is so convinced prevention works that they waive all the co-pays for Beder’s medications, pay for her vitamins and lotions, and buy her adult diapers. Tremblay says Beder should not have to choose between lying on wet sheets and a precarious trip to the bathroom.

“We didn’t want her climbing out of bed in the middle of the night,” Tremblay says, when “she’d be more at risk for falling.”

“It’s incredible,” says Beder, who still seems stunned by the arrival of free Depends. “And it’s just saved me. I mean, before I was having so many accidents because they’re so expensive.”

If all goes well, Beder will remain happily at home, the government will save money, and Senior Whole Health won’t lose money paying for Beder’s care. So far, Beder has cut way back on calls to the Stoughton Fire Department.

“I just wonder if they miss me,” Beder says, laughing. “I used to call them a lot. But Jen, my life is better, isn’t it?”

Beder turns to her home health aide, Jen McDonnell, who nods, smiling.

Beder’s 911 calls haven’t stopped altogether. There was one day in January when she called the fire department twice; a sign, perhaps, that keeping her at home, and out of expensive hospitals and nursing homes, will not be easy.

We had help with this story from WBUR’s Aayesha Siddiqui and Wilder Fleming.

It was produced, in part, as a project for the California Endowment Health Journalism Fellowships, a program of the University of Southern California’s Annenberg School for Communication & Journalism.

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  • Anonymous

    Did someone at some in sensitive hospital forget to tell him about “Penny Health”. Also If you aren’t employed and have no means of paying for treatment the hospital will file the form and get reimbursed by medicaid.

    • Randomdoc

      No, the hospital will not, unless the patient had Medicaid or is Medicaid pending. The hospital has to write off care for indigents.

  • Rapunzel

    I see no mention of Beder’s children providing her with any assistance.

    • Martha Bebinger

      Hi Rapunzel – Sue Beder says she relies on her sons for some things, but not for direct care.  

  • foody-judy

    I wonder what a nursing home would cost by comparison. Could be more, and not what she wants.

    • Martha Bebinger

      Hi Foody-Judy – Senior Whole Health says the average cost of long term care in a nursing home is $8600 a month.  If patients, like Sue, go to a nursing home after a hospital stay and need more skilled care, the average cost is $15,000 a month.  And yes, Sue says she wants stay in her house, not leave it for a nursing home.

  • David Seaman

    I have GBS, a lesser known neuromuscular disease in tghe same family with MS. i am 9incapable of caring for myself. I would like the right for euthanasia. I am tired of the lumbar punctures, the MRI’s, the sleep study’s, the monthly visits to pain management and the fact that because of the medications I am prescroibed I am a medical suspect. We have socialized schools. We have socialized road de[partments. We have socialized police and fire. Yet a large handful of lobbyists in  America tied into both the insurance and medical industries have spread the word that to have socialized medicine would be communism- which by the way is very different from Socialism- anyone who has taken freshman Western Civilization  in college read Karl Marx. There’s a big difference between what that man dreamed on paper and what transpired. The factor that Karl Marx neglected to see was greed; the very same greed that keeps our insurance rates rising while our co-pays rise. I have Blue Cross of Massachusetts. The CEO of BCBS MA is the only one in the country who turned down is $600,000 annual bonus. Despite this, my co-pays have risen by 50% to 250% while p;remiums have gone up. Last year I spent 52% of my income on out of pocklet medical expenses. I do not get one single cent from public funds; my $15,000 anua;l dissability stipend comes from the Massachusetts Teachers Association. i should be allowed to die with dignity if I am not allowe3d to be sick with dignity.

  • Mshapell

    Wow! I hope my sons never abandon me in time of need. Terrible…

  • Guest


    This is a really important story.

    Can you explain the spending chart? Is this comparing average monthly fee-for-service costs with the monthly Senior Whole Health costs? Or does it compare fee-for-service costs with the global payment SWH gets from Medicare/Medicaid? And is the $5654 the average over just 4 months?

    • Martha Bebinger

      Guest – so sorry to miss your questions when you posted them.  The charts compare actual Medicare and Medicaid spending on Sue under fee for service to the global payment SWH receives for Sue now.   So $5654 is the fixed budget that SWH receives for Sue.  It does not vary month to month. 

  • X-Ray

    And how will the recently-passed legislation in Massachusetts contain the
    kind of health care expenditures that are outlined in the article? My prediction
    is: not at all, it is tilting at windmills.

    • Martha Bebinger

      Hi X-Ray – the bill Gov. Patrick signed earlier this month encourages providers to continue adoption of global payments and other alternative payments systems (bundled payments, etc.).  We are following Sue Beder as an example of attempts to control costs for very expensive patients by financing their care through a global payment or global budget. 

      You are right that at this point, there is no sign that caring for Mrs. Beder under a global budget is saving any money.  It’s too early to deliver a verdict on whether the change can save money while improving her care.  We’ll check back with Mrs. Beder after she’s been in this arrangement for a year or so and file an update then.

      Thanks for your comment.

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