By the patient, for the patient
By the time Warren J. Smith III met Kavita Bhavan, M.D., he had had dozens of surgeries stemming from a motorcycle accident that shattered his leg. Altogether, he had spent more than a year in hospital beds, and the serious infection in his leg was another disappointing setback.
So when Bhavan, an infectious disease specialist at Parkland Health & Hospital System in Dallas, suggested that Smith could self-administer intravenous antibiotics at home, he seized the opportunity.
“It was actually pretty fun,” he says. “If I was sitting on the couch watching TV, I would hang the IV bag from the lamp. It was fairly simple. You just have to keep it clean.”
Smith is one of more than 1,000 Parkland patients who have successfully administered IV antibiotics at home through a self-administered Outpatient Parenteral Antimicrobial Therapy, or S-OPAT, program at Parkland’s Infectious Diseases OPAT Clinic, of which Bhavan is medical director.
The program has reduced the costs associated with long-term antibiotic administration by millions of dollars while improving patients’ quality of life. Best of all, it has significantly improved patients’ health outcomes.
In doing so, the self-care program challenges health care leaders — including trustees — to reconsider the balance of responsibility between medical professionals and the patients they serve.
What treatments traditionally administered by credentialed medical professionals can — and perhaps should — be administered by patients themselves? How can patients, regardless of experience or educational attainment, provide care that has better outcomes than that delivered by professionals? What are the implications for health care providers?
“Everybody's looking for how to change the system so that we can achieve the Triple Aim,” says Frederick Cerise, M.D., Parkland’s president and CEO. “This shows that allowing patients to have a more active role in their care may be an area to explore for those new processes and innovations.”
Gaining traction
Parkland’s program for patients with serious infections and a few other self-care initiatives around the world won high-profile attention last year when Don Berwick, M.D., founder, president emeritus and senior fellow of the Institute for Healthcare Improvement, used his keynote address at the annual IHI National Forum to highlight self-care in action. His presentation included the example of a young boy with inflammatory bowel disease who made an instructional YouTube video to show other kids how he inserts his own nasogastric tube — which allows for feeding through the nose — each night.
“People used to be told to basically sit down, to stay silent, to take what they’re given — food, IV, feeding tube,” Berwick told the audience. “They didn’t have the power, and now they do.”
IHI first became interested in the concept of self-care when it learned about a kidney-failure patient at Ryhov Hospital in Sweden who had learned to do his own hemodialysis — and inspired the creation of a self-care dialysis program. Today, more than 50 percent of the patients at Ryhov Hospital do their own dialysis.
That patient, Christian Farman, switched careers to become a nurse. He and the nurse who taught him to do his own dialysis — Britt-Mari Banck — came to the United States to coach a nephrology practice on how to develop its own self-care program.
But, while self-care initiatives are taking off in Europe, the concept of patient-administered care is still somewhat radical in the United States.
“It’s a scary thing to say to a health professional who is trained in a very specific way and who has been delivering care successfully for many years that ‘maybe a better approach is to teach your patient how to do some of this work,’ ” says Alex Anderson, a research associate for innovation at IHI.
Beyond that, the fee-for-service payment system punishes providers who shift billable tasks to patients. And, at a presentation about self-care at an IHI event, Anderson heard patient advocates question whether providers were shirking their work and adding to the burden that patients face. These are all concerns hospital trustees need to weigh as they decide whether a self-care progam aligns with their overall strategies.
But evidence is mounting that self-care initiatives support the Triple Aim — improved patient experience, improved health and reduced per capita cost of health care — and IHI leaders think the time has come to focus on patient-administered self-care.
“We are hopeful to spread this idea that patients should be seen as partners in their care,” Anderson says. “But it is still very, very new.”
Dialysis leads the way
The Centers for Medicare & Medicaid Services decades ago introduced the term "self-care" for dialysis patients to refer to home hemodialysis. Although home hemodialysis has better clinical outcomes than its counterparts, it has been slow to catch on in the United States, says Edward Jones, M.D., a nephrologist at Delaware Valley Nephrology & Hypertension Associates PC in the Philadelphia area.
He and his colleagues offer in-center self-care hemodialysis, or ICSCHD, in which patients perform their dialysis at a center with minimal staff support. An analysis of 40 patients who initiated the method between April 2011 and March 2014 found that they had significantly better outcomes — a lower mortality rate, fewer hospitalizations and fewer missed appointments — than patients in a matched control group.
Jones believes the good results for dialysis patients using the approach reflect the fact that self-care patients spend more time on dialysis. Among dialysis patients in general, missed treatments and cutting treatments short are common; indeed, the average dialysis treatment in the U.S. lasts 3.5 hours rather than the recommended four hours.
In contrast, Jones’ self-care patients have an average treatment that exceeds four hours, and only one patient dialyzes less than four hours. “They participate in developing their treatment plans and following through with them,” he says.
Jones and his partners serve as medical directors for several Fresenius Dialysis Centers in southeastern Pennsylvania, and they have supported patients who opt for home dialysis since the early 1980s. A significant barrier, however, is that home dialysis requires a partner because of potentially catastrophic complications. Jones and a colleague noticed that patients who were trained for home dialysis but were unable to follow through because they had no partner to support them had better clinical outcomes than patients who used the traditional in-center, technician-assisted therapy.
Thus, when Delaware Valley Nephrology and Fresenius built a new dialysis center in 2012, they included a 10-chair self-care unit that could accommodate as many as 50 patients each week. The unit is staffed by two technicians and one nurse per shift — about half the staff of a standard dialysis unit.
The staff uses a five-step training program that begins with the patient’s first dialysis session, and it generally takes six weeks to three months for patients to master all the steps. They learn about their disease process and the mechanics of the procedure — how to use the machine and how to insert their own needles — as well as the nuances of dialysis, such as what to do if their blood pressure falls or they experience cramping.
Patients of all ages and educational levels have been able to succeed at ICSCHD, Jones says. Hurdles that cannot be overcome include poor eyesight, neurologic deficits and psychiatric problems.
Medicare, the primary payer for kidney dialysis, financially incentivizes self-care dialysis, whether it is delivered at home or in a center. When it adjusted its pay schedule a few years ago, physicians started encouraging home dialysis, which is now used by about 10 percent of all U.S. dialysis patients, Jones says.
The majority of patients, however, are unable to accept the logistical challenges and anxiety associated with performing such a complex procedure at home. While in-center self-care eliminates these problems, most centers have not created a unit dedicated to self-care patients. Jones believes intermingling self-care patients and traditional patients in the same space sabotages the culture needed for an in-center self-care program to succeed.
“Human nature is that they start seeing the other patients and they fall back into ‘maybe I’ll just let someone else do the work for me,’ ” he says. “It’s the same thing with the staff; they have to learn to restrain themselves and let the patients figure out what's wrong with their own bodies.”
Self-care at Parkland
Smith eventually had to have his leg amputated because of an intractable problem with a knee implant. Before that, he completed two courses of self-administered IV antibiotics through the S-OPAT program.
“I had what I called my little lab in the kitchen,” he says. “I would get my gloves and everything laid out on a towel. They supplied me with everything I needed and, quite frankly, it was pretty simple once you get the hang of it.”
A mortgage banker by trade, Smith started his long ordeal with the health care industry in 2009, when a truck driver ran a red light and hit his motorcycle, essentially snapping his left leg in half.
That was the same year that Parkland launched the OPAT clinic and began collecting data for a four-year study to compare the outcomes of patients enrolled in S-OPAT with those of patients whose IV antibiotics were administered by nurses at the patient’s home, a skilled nursing facility or an infusion center.
The study's results were dramatic: Patients who self-administered their therapy at home had similar or better clinical outcomes than the nurse-assisted patients, and they saved the hospital 27,666 patient days of hospitalization, translating into $40 million worth of inpatient care.
For many hospitals, that would mean passing up $40 million of revenue. But Parkland is an 800-bed safety net hospital that typically operates at full capacity. The S-OPAT program serves uninsured patients primarily because insured patients can receive nurse-administered therapy at home or another location. So, for Parkland, the S-OPAT program meant that $40 million in unreimbursed care over the nearly four years of the study was redeployed to other individuals needing inpatient care.
“Tying up a number of beds for patients who could otherwise be home didn’t make sense,” Bhavan says. “By opening those beds up for the acutely ill who are coming into our ER every day, we are doing better with our resource utilization.”
It wasn’t the dollars that Parkland clinicians were thinking of when they conceived of the program, but rather the frustration of seeing patients who need IV antibiotics linger in the hospital for weeks only because they had no insurance to pay for home health services, she says.
“Many of our patients are the working poor,” Bhavan says. “They would like to get home to be able to pay their bills on time and take care of their loved ones. It’s burdensome for them to be tied up in a hospital.”
The study of the S-OPAT program revealed a disparity in outcomes between the uninsured patients who administered their IV antibiotics at home and their peers who received nurse-administered therapy, in favor of the S-OPAT group.
Cerise was not Parkland’s CEO when a team of pharmacists and physicians, headed by Bhavan, sought and received approval to send patients home with IV bags and latex gloves. But he shares the previous CEO’s enthusiasm for physician-initiated innovation.
“We have to take advantage of our engaged physicians — these are smart, top-of-the-class people who can figure out a better way to do things,” he says. “Then give them some support. You have to have more than a good idea.”
Before the S-OPAT program was launched, Bhavan and her colleagues had tested it incrementally and worked out the patient protocols and internal processes needed for the program to succeed. The program is supported by a case manager, social workers, pharmacists and transitional care nurses who work together to determine which patients are appropriate for self-administered IV therapy, train them appropriately and monitor them closely. Because of that, Cerise says, the potential liability associated with a self-care program is not a big worry.
“You're taking a stretch when you're teaching patients, oftentimes with low-education status, to administer their antibiotics at home, but the institution was able to make a call and determine it was worth pursuing,” he says.
Parkland has challenged other physicians to consider opportunities for self-care initiatives. For example, its cardiologists are examining whether patients who need continuous IV support for late-stage heart failure might be able to receive this therapy at home.
During his two courses of self-administered IV therapy, Smith felt supported by the transitional care nurses who trained him in the procedure and monitored him during weekly appointments at Parkland.
“The team is highly, highly enthusiastic, motivated and totally bought in,” Bhavan says. “And it shows in the way they care for the patient.”
Culture change
Not all clinicians can be expected to share that enthusiasm. Patient-administered self-care initiatives require nurses and other medical personnel to become coaches and teachers who relinquish some of their traditional roles, including the instinct to help a patient who is struggling.
The nurses and technicians who work in Delaware Valley Nephrology’s self-care unit like the patient-empowerment culture, but Jones sees some clinicians, including nephrologists, who cannot keep from rushing to a patient’s side when an alarm goes off.
“They can't get over what I call a paternalistic approach,” he says. “You've got to give the patient the leeway. If you try to intercede, it doesn't let the culture work.”
Patient-administered self-care requires nothing less than a cultural shift in how health care professionals see their roles, Anderson says.
“There are many providers who really do believe that they are the authority figures and that is how our health system has worked for a really long time, and they are probably not the best champions for getting this kind of work started,” he says. “I think [self-care initiatives] need to be an opt-in for providers who have that inclination to see their patients as partners, as people who are competent and capable of learning.”
Bhavan’s work with the S-OPAT program — in which many patients have not completed high school and some ended their education during elementary school — shows that education is not correlated with the ability to handle complicated medical procedures.
“It’s more than just rising to the occasion,” she says. “They are doing things very well.”
When Berwick interviewed Banck, the nurse who helped to start the self-care dialysis movement at Sweden’s Ryhov Hospital, at the IHI meeting, she said some of her colleagues resisted the idea at first.
“What did you say to them?” Berwick asked.
She responded: “I said, this is the future.”
Lola Butcher is a contributing writer to Trustee.
Trustee takeaways
A successful self-care system, either in a home setting or at a health care facility, requires four components, according to the Institute for Healthcare Improvement:
- An activated, capable patient or family caregiver: Patients must be medically stable and capable of mastering the necessary procedure. Beyond that, the provider organization must establish a list of criteria, based on the self-care procedure, that determines whether patients are appropriate for self-care. These likely will include no history of intravenous drug use or alcohol abuse and access to a telephone. For certain drugs, access to refrigeration is essential.
- Appropriate procedures: To be appropriate for self-care, a procedure must be able to be taught to and delivered by patients and/or family caregivers who have no formal health care education or experience. The procedure needs to be broken down into simple, sequential steps. In addition to training patients and testing them for mastery, providers should create educational materials so patients do not have to rely on memory. For example, YouTube videos that show each step of a procedure allow patients to continue learning as they gain experience with the procedure.
- A supportive health care system: Patients engaged in self-care at home must have easy access to 24/7 support if they have a question or crisis related to their care. Thus, providers must create the infrastructure needed to address medication refills, disease progression or early warnings of a potential problem before the patient’s regularly scheduled visit.
- Practitioners trained in self-care: Partnering with patients to support self-care will not come naturally to all providers. They need to be trained to serve as a teacher and coach, and they must believe in the patient’s ability to provide self-care safely and effectively.