Practice offers alternative in end of life care
MIDDLEBURY — For Middlebury resident Stephanie Smith’s mother, Marthena Smith, slow medicine seemed to be the right fit.
Marthena Smith, who died in June at age 89, enrolled herself in Porter Hospital’s Partners in Palliative and Home Care program the previous December. She had a stomach problem, and it seemed as though she was sick all the time.
“She just made the decision to go to them herself,” Stephanie Smith said. “They empowered both me and my mother to make decisions that were best for her.”
The younger Smith described the care provided by the practice, which recently celebrated its first anniversary, as “a very gentle form of doctoring.”
“They came to the house and checked her out there, asked her how she was feeling, and discussed the courses of action to take to help improve her stomach condition,” she said. “But they worked with her, they didn’t just tell her what to do.”
According to Smith, the doctors talked to her and her mother all along the way and told them what they could expect.
“I trusted their advice,” she said.
After this experience, Smith would recommend palliative care to anyone considering it.
“It’s all good. There’s nothing down about it,” she said. “We had a situation where my mother could have spent her last months in a hospital, away from all of her family and friends, but instead, she was comfortable, relaxed and truly happy all the way up to the end.”
Smith only wishes that there were a way that more people could have access to the program.
“I’m not sure that the system provides a lot of monetary support for it,” she said.
Indeed, Partners in Palliative and Home Care has yet to turn a profit.
Generally speaking, supporting a business venture that only loses money doesn’t make a whole lot of business sense. But Porter Hospital’s innovative palliative care program might be the exception to the rule, according to Porter spokesman Ron Hallman.
Dr. Diana Barnard, a physician and co-founder of the palliative care practice, admitted that the program will never be a money maker.
“It may never even be revenue-neutral,” she said.
But according to Hallman, even though the program may not be revenue-making or even revenue-neutral, it’s well-worth keeping around.
“The hospital board sees this program as important to our mission, community and patients and we see it as an opportunity for people to have more autonomy and control over care during what we recognize as a very sensitive and emotional time,” he said. “We want to be as respectful as possible to the situation.”
In September 2009, Porter Hospital administrators decided to support doctors Will Porter and Diana Barnard as they set out to develop a practice that would promote in-home care and comfort for those with life-limiting illnesses. The goal of palliative care is to reduce the severity of disease symptoms and improve quality of life, not necessarily bring a person back to complete health.
One year later, the Partners in Palliative and Home Care program is providing care for over 100 patients in the Addison County area.
Along with patient care, Porter and Barnard also offer support for the families of their patients, a service that is not necessarily “on the clock,” but that is necessary in this kind of work, according to Barnard.
“The concept is great and everyone thinks it’s great to see doctors seeing people at home and providing really good end-of-life care, but, there are not good payment mechanisms for that,” Barnard said.
“Nor is there good reimbursement for all of the coordinating and all of the time that you put in, in addition to providing all of that home care,” she said. “Family meetings, calling people who are out of town, calling the home health nurses and coordinating. We estimate that probably of all the time put in, probably only 25 percent of it is directly reimbursable.
“That provides a financial challenge because there’s a limit to how efficient we can be,” Barnard continued. “Ways in which traditional medical practices might try to improve their bottom line are sort of counterintuitive to what we do.”
Hallman, along with the board, recognizes that the Partners in Palliative Care faces a unique challenge when it comes to budgeting.
“Every department has an estimated budget and projections when they get established and I think that they’ve really been working really hard to achieve those benchmarks,” he said. “But it’s been especially difficult for them because they’ve had no history to draw from — there has never been a practice like this before and it’s a new type of program. I think that they are probably still assessing those goals and making sure that they are realistic.”
A DIFFERENT KIND OF CARE
Barnard explained that providing care for a patient who has already given up on treatment creates a particularly touchy situation.
“People don’t just kind of slow down and spend more time in bed and then die, they tend to do things like fall, or have trouble with eating, or if they have dementia they might have behavior issues which need to be managed,” she said. “It’s actually a very intense kind of medicine with a hands-on approach. It’s not the type of thing that can easily be solved with a test or a new kind of medicine. In fact, it’s often the opposite.”
Porter agreed, explaining that what he and Barnard are practicing is a form of “slow medicine,” a trend that is spreading across the nation.
“The idea of traditional medicine, or conventional medicine as it’s practiced today is that there’s a problem and you fix it,” Porter said. “Our patients are often in a situation where they’ve had a serious, long-term illness that doesn’t have a fix, and it’s more a matter of how things can be done to make them more comfortable and improve their quality of life, while acknowledging that there’s no fix. So, getting another high-tech test or procedure isn’t anything more than an inconvenience to them.”
The focus of Porter’s palliative care program is two-fold, according to Barnard: one, their patients must be homebound, and two, must be dealing with the treatment of life-limiting illnesses.
“We’re focusing on people who are strictly ready to take a different approach to their life-limiting illness,” Barnard said. She explained that the practice is also focusing on home-based care, “rather than assuming that every time you have a problem they’ll go elsewhere, or get a test or go to the hospital.”
According to Porter and Barnard, the demand from patients is there, and has been from the beginning — but until health care reform becomes a reality, there won’t be a whole lot of support for palliative care built into the system.
With one year under their belts, the Partners in Palliative Care team — which includes Barnard and Porter, as well as Family Nurse Practitioner Leslie Orelup — looks forward to continuing to grow and improve as a program, despite the financial odds.
“We have definitely learned a lot,” Barnard said. “The biggest thing we’ve learned is that there’s a limit to our efficiency — a limit to what we can do to directly improve the bottom line. But there’s a lot that we can do to continue to expand our services and reach out to more people, especially regarding the subject of community education.”
Tamara Hilmes is at [email protected].