Most cancer patients going through treatment struggle with pain, fevers and nausea, sometimes severe enough to send them to the emergency room.
But the chaos of the emergency room and related stress are "an assault on your well-being," said Richard Dean, who took his wife many times while she was battling ovarian cancer six years ago. He told Johns Hopkins Hospital officials they needed an urgent care center especially for cancer patients.
"Anyone who gets cancer discovers it's just a messy disease," Dean said. "Your white blood count runs down, you get a fever, and you're at really high risk for infection and you go sit for hours in a waiting room with a bunch of kids with the flu."
Hopkins listened and, using some patient data crunching from Dean, who teaches engineering at Morgan State University, launched a cancer urgent care center in 2014 in space adjacent to where chemotherapy is delivered. The Hopkins center is open 12 hours a day during the week and plans to open on Saturdays starting in March.
Patients typically don't walk in, as they do with normal urgent care centers, but call a hotline and are told to come to the center if the nurses who answer the phone can't address their complication.
The center now sees about 10 patients a day — about 3 percent of those Hopkins treats for cancer on an average day — and most go home after a few hours.
"We knew sending our patients to the emergency room was not in their best interests," said Sharon Krumm, director of nursing administration at the Johns Hopkins Kimmel Cancer Center. "If they have a heart problem or a stroke, yes, it's a good place for them, but that's not what was happening."
The urgent care center's patients don't just get better, more efficient care, Krumm said. A study released this week suggests that avoiding hospitalizations is significantly lowering costs for patients and reducing the burden on the health care system.
Cancer treatment contributes more to health care costs than any other disease, according to the study researchers from the Kimmel Cancer Center and the Hopkins' Bloomberg School of Public Health.
The average out-of-pocket costs associated with a new cancer diagnosis ranged from $2,116 for Medicaid beneficiaries to $8,115 for those with Medicare and no supplemental insurance, according to the study of 18,000 patients between 2002 and 2012 published this month in JAMA Oncology.
Hospitalizations accounted for up to 46 percent of the patient's bill. The study found that among a group of patients at Hopkins, the average number hospitalized was cut in half after the center opened.
The Hopkins center is among a half-dozen around the country that have opened for cancer patients, aiming to keep them out of the emergency room and hospital beds, according to Lindsay Conway, managing director of The Advisory Board Co., which provides research and consulting to hospitals.
A 2013 report the firm provided to 1,200 hospitals found more than half of Medicare patients actively getting chemotherapy visit the emergency room each year and close to two-thirds of those visits result in hospitalizations.
The most common reason is pain, and the emergency room isn't always equipped to handle the problem, the Advisory Board report said. Doctors sometime ordered unneeded tests and procedures, and patients were exposed to potential infections at a time when their immune systems were compromised.
The report also found the average chemotherapy-related emergency visit cost about $800 and the average inpatient stay averaged $22,000.
A doctor outside of Philadelphia is believed to have pioneered the idea for cancer urgent care about five or six years ago, said Conway, who leads the Advisory Board's oncology roundtable program that recommends best practices to hospitals.
The model allowed patients to get care after regular business hours. Patients could call first for advice from trained physician assistants or nurses on caring for themselves at home instead of going to the emergency room.
Conway said these "triage" phone lines could be helpful because most hospitals and oncology practices do not see enough cancer patients to justify a separate urgent care center. An alternative for hospitals are websites where patients could get standardized instructions on caring for common side effects and be able to message securely with clinicians.
"Having a physical space and a team of clinicians dedicated 24/7 to seeing cancer patients is a significant investment in resources, and only hospitals that see thousands of cases a year can provide that," Conway said. "A lot only have 500 patients, so they have to explore other options."
The University of Texas Southwestern Medical Center is one of the large academic hospitals that decided it could justify an urgent care center.
Dr. Thomas Froehlich, medical director of the center's cancer clinics, began offering urgent care a few years ago after finding patients were calling after hours and being sent to the emergency room, where he said staff didn't readily know how to treat the cancer patients' mouth sores, fevers, nausea and dehydration.
Sometimes, he said, a hospital visit is necessary, for example, for blood clots that sometimes develop after some treatments. In those cases, urgent care staff can help patients bypass the emergency room and get admitted to the hospital.
Like Hopkins, the Texas urgent care center is run by physician assistants who oversee other specially trained staff who man phone lines. They often contact a patient's oncologist for specific instructions. If needed, they schedule appointments in the urgent care center, which is embedded in the regular treatment areas.
Froehlich is considering expanding night hours at the Texas center, which already is open on weekends. He's also considering a web portal that would help patients who live hundreds of miles away and can't readily access the center.
He estimates up to 15 percent of cancer patients need urgent care at least once, sometimes more often, and that translates into two to five patients a day.
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"We decided to do this to provide better care," he said. "It results in lower costs, but really it's about better care, keeping patients at home and not in the hospitals. No one wants to be in the hospital."
Dean said his wife always wanted to be at home in her own bed in Columbia. Now serving on the Hopkins Patient and Caregiver Advisory Council, Dean crunched patient data to suggest how many beds the Hopkins center would need and how it should be staffed.
His wife died before the Hopkins urgent care center opened. But his daughter Samara, who also was diagnosed with ovarian cancer, has visited the center.
Dean called it comforting just to know the center was there and looks forward to it adding weekend hours. He'd also like to see community hospitals pool resources to support a center if they can't manage one on their own.
"Patients and caregivers really become the experts on what it's like to live in a system," he said. "I have great regard for the folks at Hopkins, but they don't have the eyes that I have. When you're in the system you can see the gaps. And now a big gap is being filled."