Hospice nurses might just be the healthcare industry's most patient-centered professionals. For those of us who don't interact with patients during these times of physical and emotional pain, it is hard to know what motivates the hospice nurse to help the dying and their family manage these final days.
There's some reason to suspect these patient-centered attributes might be inherited. Susan B. Frampton, PhD, took to heart the lessons from her mother, a New Jersey hospice nurse, and is today working with health leaders to transform the culture of the entire healthcare industry. (Exclusive audio interview with Susan B. Frampton, PhD.)
"My mother had such deep relationships with her patients and their families that it really hit home for me that that's where healing takes place," says Frampton.
As president of Planetree, Inc, in Derby, CT, Frampton oversees a non-profit that provides education and networking to acute care hospitals, continuing care facilities, and outpatient clinics in an effort to personalize, humanize, and demystify the healthcare system.
If the care giving stories passed from her mother served as motivation, Frampton's formative experiences as a medical anthropology graduate student at the University of Connecticut showed her first-hand that there was plenty of room to improve the healthcare system. As an advocate for patients with sickle cell disease, Frampton tried to help families navigate the countless roadblocks that the industry imposed for seemingly needless reasons.
"I would go to emergency rooms with these families and help to be a liaison between them and the healthcare staff, and I saw the challenges there in the way people were treated, the way they were viewed, and the lack of information they were given," says Frampton. "It just really struck me that there was this power differential between the very well-educated healthcare professionals and all the information that they had and these folks just trying to figure out what is happening to me or my loved one—folks who are in pain and don't understand how to negotiate the system."
Fast-forward some 30 years, and today Frampton is still trying to improve the care patients receive, but now she does it from within Planetree's international network of healthcare organizations. While the national dialog persists about reforming what's wrong with healthcare, Frampton's tireless networking, consulting, speaking, and prolific writing appeals to health leaders to reform their own organizations from within. She says these necessary changes start when providers see healthcare—and everything they do as healthcare professionals—through the lens of patients and their families.
"When you see things through that lens, you see things very differently," says Frampton, "and it's pretty straightforward in the areas we fall short in healthcare and need to focus more of our efforts."
But confusion throughout the industry about how best to improve the patient experience abounds, as do the excuses for not changing longstanding procedures. Frampton provides the seemingly simple example of patient-directed visitation in the ICU. Too many of these units still maintain policies that limit visitation at a time when patients need support from family and friends most, says Frampton. When she talks to providers about this practice, she finds that they are well-meaning and think these policies are required, but in reality Frampton says there's no evidence supporting limited visitation. "In actuality, it's really that the caregiver doesn't want to give up control, for fear that visitors in the room may get in the way of providing care. From the patient's perspective, having loved ones close to them is part of the care," she says.
Barriers within the ICU are hardly the only examples of missed opportunities to provide a patient-centered experience, says Frampton. Planetree's model recommends sharing records with patients, and she says that might be the most contentious issue among provider organizations. She says that at first providers resist giving up control of the record to patients, but then they realize that patients who understand and even contribute to their medical records experience increased satisfaction and quality of care.
"I see our Planetree hospitals as living laboratories and pioneers in innovation," says Frampton. "We try to take advantage of every opportunity to pull innovation across the entire membership network."
The Planetree philosophy continues to spread after some 30 years, with hospitals and systems as far away as Japan and the Netherlands taking part in Planetree projects. In addition, in recent years prominent academic medical centers such as the Cleveland Clinic and UMass Memorial Medical Center in Worcester, MA, have adopted the Planetree model.
Frampton says that lately she's been particularly inspired by the work Planetree is undertaking with the Veterans Affairs' healthcare system. "We're working with four large divisions around the country," she says, "and they have had some really great outcomes in terms of patient satisfaction and employee engagement, and so we've become part of that whole culture change."
For a woman who sees the parallels between her lifelong work in advancing patient-centered care and her personal interests instructing Kripalu yoga in her community, Frampton keenly recognizes the importance of creating meaningful connections. "Working in healthcare is one of the most rewarding things we can do," she says. "You never have to ask yourself, 'Is what I do making a difference?' I think being open to patient-centered approaches makes it an even more rewarding experience."
Rick Johnson is director of editorial for HealthLeaders Media. He may be contacted at firstname.lastname@example.org.
Toward That Moment That Something Changes
"As you have leaders step away from the bedside, there's more and more of a disconnect the further away we get from the care that we provide."—Laura Fedge, RN, BSN, MHSA, CCRN
The experience that Laura Fedge, RN, BSN, MHSA, CCRN defines as one of the best of her career is one that many of us would find quite grim. The 29-year-old nurse was helping the family of a terminal cancer patient decide if they should pursue additional chemotherapy or place their loved one in hospice care. (Exclusive audio interview with Laura Fedge, RN.)
"I was trying to get them to a point where they realized this is not a right or a wrong, it's really just knowing your family member, knowing what he would want, understanding the prognosis of what was happening," she says. "They were just so appreciative of the time that I dedicated; and for me, bringing the family through the process is the kind of thing that I truly love."
Fedge has achieved much in her relatively short career, constantly striving for excellence in critical care. While working at Georgetown University Hospital (GUH) in Washington, DC, as a critical care bedside nurse, she became the chair of the performance improvement and research council. After pursuing her master's degree, Fedge became clinical nursing director for medicine services at GUH—all the while continuing to take shifts at GUH to stay grounded.
"My philosophy has always been as you have leaders step away from the bedside, there's more and more of a disconnect the further away we get from the care that we provide," she says. "For me, keeping your foot in the door is how you create that connection between leadership and direct care. It's also how you breach the hurdles—that's how you know the problems that are going on and how you pursue the avenues to correct them."
Fedge was inspired to seek a career in nursing after shadowing a classmate's mom who was a nurse in the local emergency room. She also attributes her passion to her affinity for managing crises.
"If someone is sick or if there's an emergency, I can put the pieces together to rectify the situation," she says. "I love the health and physiology about healthcare. I love the science behind it, but then I also love that there's so much prevention involved."
It's this passion that drives Fedge to dedicate her life to teaching young nurses while continuing to regularly care for patients—things that other young nurses may put off for later in their career. Her immense feeling of duty toward her patients guides her daily actions.
"You can always come into work and take care of your patients that are in front of you, but there are always tiny little parts about taking care of your patients that fall through the cracks," she says. "And when you go home each day you're always thinking of what you could have done better. You're taking care of people so there's always the potential to have things work better or have that patient's hospitalization be a little bit better the next time around."
Like the time Fedge spent with the aforementioned cancer patient, she finds victory in the little things—like the moment a student understands a new concept or the moment a patient and their family comes to terms with the diagnosis, good or bad.
"My favorite part of taking care of patients is that moment that something changes," she says. "And in critical care that can be anything; that can be the moment that the patient survives the code or the moment that the family understands the prognosis. I love the fact that my job is never the same thing every day."
Marianne Aiello is an associate editor for HealthLeaders Media. She may be contacted at email@example.com.
Value by Design
"Cost containment should not be the sole focus of healthcare reform. We need to realize that the reason we provide health insurance and wellness programs is to produce health."—A. Mark Fendrick.
Americans and the healthcare system are spending millions annually on drugs and services that are not leading to better outcomes, while many employers and health insurers have raised out-of-pocket costs as a way to reduce health spending.
But there is a growing movement that argues that removing cost barriers on evidence-based medicine leads to better patient adherence, improves outcomes, and could even save money in the long run through placing more costs onto the individual.
That concept is called value-based insurance design (VBID), which lowers costs on the most beneficial drugs and services for those who need them the most—and can also increase costs on medications and services that are not valuable. VBID also includes tenets that pay physicians more for their services when they are providing evidence-based care.
A. Mark Fendrick, MD, co-director of the University of Michigan's Center for Value-Based Insurance Design in Ann Arbor, is co-creator of the idea, which he says can lead to averted emergency room visits and hospitalizations, and decreased costs associated with chronic disease.
"VBID tries to remove the one-size-fits-all benefit design of which every doctor visit, every diagnostic test, and every drug cost the same" and instead takes a "clinically-sensitive approach," in which patients pay lower copays and coinsurance for services that are valuable, says Fendrick. (Exclusive audio interview with A. Mark Fendrick.)
Fendrick created the VBID idea with Michael Chernew, PhD, professor of healthcare policy in the Department of Health Care Policy at Harvard Medical School, after they talked about bringing value into healthcare in the late-1990s.
Their talks developed a theory called benefit-based copays, which suggested that the healthcare industry should base the patient's contribution on what the drug delivers in health per dollars spent rather than simply the cost of the drug.
For instance, there are low-cost drugs that don't benefit the patient as much as high-cost drugs that could help a patient with chronic disease. Why charge the same for both drugs when the low-cost drugs may not help the patient.
"Why I got into this 10 years ago was that I really saw the picture, which has unfortunately come true, that cost containment and bending the curve have been the flag-bearing statements with little concern over what cost containment efforts will do in terms of the population's health," says Fendrick.
The duo's idea gained momentum in the academic community with a 2001 American Journal of Managed Care article about the idea, but it wasn't until the Wall Street Journal reported on Pitney Bowes' pioneering VBIDs work in May 2004 that the larger healthcare industry took notice.
"Honestly, since May-June 2004, it was not the New England Journal of Medicine which is what gets me promoted, but the Wall Street Journal that absolutely put us into play and into the national policy discussion," says Fendrick.
Fendrick says the VBID theory didn't take flight until patient contributions skyrocketed.
"We view VBID as soft paternalism in the fact that we use the copayment and physician reimbursements to provide that financial and sometimes non-financial nudge to understand that it costs you less as the patient and makes you more money as the doctor" when there is value-based medicine, says Fendrick.
Since the days of the employer pioneers of VBID, Pitney Bowes and Marriott, more employers have implemented the idea of lower copays for appropriate care for the right patients. There are VBID programs that target patients with diabetes, depression, and asthma, which Fendrick says are chronic conditions that make up the majority of the country's medical costs.
UnitedHealth Group created the Diabetes Health Plan in its self-insured (larger employer) market, which is the first condition-specific VBID plan. UnitedHealth's plan lowers or eliminates out-of-pocket costs for medications and provides online monitoring, wellness coaches, and self-management programs for diabetics and pre-diabetics if they follow their treatment plans and evidence-based guidelines.
VBID has even become part of the health reform discussion. Value-based programs were mentioned in health reform legislation and a bill that would test the idea in the Medicare population. Fendrick says federal lawmakers and health leaders should not focus solely on healthcare costs, but value should always be part of the discussion.
"Cost containment should not be the sole focus of healthcare reform. We need to realize that the reason we provide health insurance and wellness programs is to produce health. As we try to contain costs, we have systemically created barriers for both clinicians and more importantly for patients to get those well established evidence-based interventions that have been clearly shown to improve health at a very reasonable cost," says Fendrick.
Les Masterson is senior editor for health plans for HealthLeaders Media. He may be contacted at firstname.lastname@example.org.
One cost and safety issue that has caught the attention of Capitol Hill lawmakers discussing healthcare reform issues deals with patients returning to hospitals within 30 days of their discharges. Those looking to improve the discharge process—and stem high costs associated with readmissions—have been looking closely at the ongoing work of Brian Jack, MD.
About six years ago, Jack and his associates at Boston Medical Center (BMC), a nonprofit, 547 licensed bed facility, began studying the hospital discharge process as a patient safety issue. The reason wasn't so much that errors were happening to patients during discharge: It was concern that errors were occurring following the discharge—when patients were making the transition to other types of care outside of the hospital.
At the same time, two trends were converging to create "even more problems in an already stressed healthcare system," says Jack, who is an associate professor and vice chair of the department of family medicine at BMC.
First, lengths of stay in hospitals were getting shorter, meaning patients were leaving quicker—and sometimes in less stable condition compared with the longer LOS, Jack says. And second, primary care providers "were not seeing their patients in the hospital as much as they used to" because hospitalist care was being expanded.
"No one had ever looked at the [discharge] process carefully before," he says. "And no one had set up guidelines for the kinds of things that ought to happen in hospital discharge." With 30 million hospital discharges occurring annually nationwide, the impact could be huge.
"It really bothered me because I knew that a certain number of [patients] were going to be coming back because we just weren't spending the time to take care of all the details necessary for them to go home," Jack says. A 2009 study that Jack worked on showed the rate was close to 20%.
A grant from the Agency for Healthcare Research and Quality in 2003 got them on their way to "re-engineering the hospital discharge process" with a focus on patient safety. An ironic term, Jack contends, because the process had never been "engineered" in the first place. But, now, Jack and his team would borrow engineering principles—ideas such as process mapping or root-cause analysis—and apply them to hospital processes.
The result of their research was development of 11 components called the Re-engineered Discharge (RED) that could be used when patients were ready to leave the hospital. The components were incorporated into a checklist—similar to that used by airline pilots before takeoff—noting areas such as educating about discharge plans or providing timely telephone follow-up.
They began to test the RED process, and including an intervention at the time of discharge with a specially trained nurse, called a discharge advocate, who would teach elements in an after-hospital care plan that they had developed.
"What we did basically was to collect information in the hospital that was relevant to people that allowed them to take care of themselves when they went home," Jack says. On average, many patients had been getting eight minutes of discussion before they went home. "How then are they are expected to take care of themselves?"
In one study using the RED intervention program, 94% in the intervention group were discharged with a primary care appointment within 24 hours after discharge; in the usual care group, 35% were discharged with a primary care appointment. Hospital utilization with RED within 30 days of discharge decreased by 30% among patients receiving general medical services. Overall, avoiding unnecessary hospitalizations was found save the healthcare system about $412 per person.
While their studies used a nurse to provide the patient with information before discharge, BMC began looking for a way to automate that process. In 2007, it rolled out "Louise," an interactive character on a computer screen that patients could use at discharge to review care plans.
So is the message getting through? On grand rounds, Jack likes to tell the story of how his father—after having his pacemaker battery replaced—was discharged. Following an overnight stay, he was handed a box with a cellophane-wrapped CD on how to "bridge" his blood-thinner medication, or bring it up to the necessary coagulation level.
The nurse said she didn't have time to talk with him, and that he should go home and watch this CD because "it will explain to you how to draw up your medicine and inject yourself, and why you need to do that."
"It was totally ridiculous," Jack says. "There are a lot of stories that I could tell you about people who have been discharged without adequate plans who are set up to failure."
Janice Simmons is senior editor for quality for HealthLeaders Media. She may be contacted at email@example.com.