Multidisciplinary Care for Adults with Congenital Heart Disease
“I am very depressed today. I’m not sure that I want to keep living.” Hearing this comment from a patient was jarring to Ami Bhatt, MD, but it was not a complete surprise. Bhatt, a physician at Massachusetts General Hospital, felt a particular attachment to her patient. She already knew of the depression and anxiety, and she knew that psychiatric care did not seem to be helping. The patient’s crisis passed without physical trauma, but it left a lasting impact on Bhatt. It was the event that motivated her to expand the scope of her team’s work to include mental health services.
Bhatt’s specialty was cardiology, not psychiatry. She led a small team that offered multidisciplinary care for thousands of adults with congenital heart disease. Among their many health challenges, these patients confronted anxiety and depression far more frequently than the population at large.
A 2001 graduate of the Yale University School of Medicine, Bhatt had come of age in a health system that was not well adapted to serving adults with congenital heart disease. It was a population that simply had not been around very long. During the second half of the 20th century, spectacular advances in surgical and medical treatments had dramatically extended life expectancy.
Bhatt began focusing exclusively on adults with congenital heart disease in 2008, fortunate to be mentored by Richard Liberthson, MD, a pioneering figure who had dedicated much of his career to serving these patients. When he retired, Bhatt took over care for his panel. By 2016, she led a full-time team that included another MD, a nurse practitioner, a nurse, a social worker, and an administrator.
Much of the work of Bhatt’s team was not reimbursable under fee-for- service policies. Nonetheless, she was firmly supported by Mass General’s Cardiology Division in anticipation of evolving payment models.
Medicine was Bhatt’s calling from early childhood. Originally, she was lured by an attraction to the bond between patient and physician, afflicted and healer. There are a few Norman Rockwell images that capture the significance of the interpersonal connection for Bhatt, and she frequently includes one in her presentations.
A second shaping force in Bhatt’s career was the pull of scientific curiosity and intellectual challenge. The mechanics of the heart fascinated her. It wasn’t enough to understand how normal hearts worked; she wanted to understand how to repair hearts that were broken in the most fundamental ways, as though they had been, as she put it, rearranged like a Rubik’s Cube.
Her experience during medical school rotations, however, suggested that the care of children with congenital heart disease was a domain dominated by surgeons, and she was far more interested in medicine. Bhatt soon saw a new pathway when, on one rotation, she was presented with a 44-year- old patient who’d had his heart surgically repaired as a child. She recalled:
He had severely leaking valves, difficult to control arrhythmias, and one of the biggest hearts I had ever seen. The adult cardiologists just weren’t trained for this kind of case. They had little exposure to pediatric diseases. It seemed that nobody was well prepared to care for this patient.
Bhatt saw an enormous opportunity for impact. Her career direction was set.
A few decades ago, amid the excitement of medical breakthroughs that extended the lives of patients with congenital heart disease, little was known about the long-term quality of life or the frequency of serious medical complications these patients would face. Today, those needs are more familiar. Lauren McLaughlin, a nurse and member of Bhatt’s team, elaborated:
The Adult Congenital patients and their families are such a unique group. They have dealt with complex cardiac issues since birth and continue to deal with new issues and challenges as they move along the road to adulthood, education, careers, marriage, children, adventure, and aging into the golden years.
It is hard to generalize about congenital heart disease because there are many different types, including leaky valves, weak muscles, obstructions, and misconnected blood vessels. The statements that follow are generally true but may not apply to every patient.
There is plenty of good news. By and large, these patients are able to pursue normal work and family lives. Furthermore, those with surgically repaired defects of mild-to- moderate complexity have near-normal life expectancy; those with the most complex repairs can expect to live into their 40s or 50s.
Still, their lives can be challenging. Although most congenital heart disease is detected and treated very early in life (with some minor defects going unnoticed until symptoms escalate later in life), a surgical repair is not a cure. Most patients are on lifelong medications of some kind and require active surveillance.
Furthermore, many must live with a handful of disquieting facts. An unplanned heart surgery could become urgently necessary at any time. Or a steadily deteriorating heart problem may call for close monitoring and therefore constant worry. Or stress or hormones can aggravate arrhythmias. Finally, congenital heart diseases have genetic underpinnings and this can be particularly worrisome during childbearing years.
Anxiety and depression are common for these patients. Indeed, for some, large hospitals trigger memories of the trauma they experienced from their heart treatments when they were very young, and there are those among them who exhibit symptoms similar to PTSD. Some patients also suffer from low self-esteem that can be traced to hindered friendships and sports restrictions in youth.
These patients have widely varying understanding of what it means to have heart disease. While a number of them unnecessarily limit themselves out of exaggerated concern for their condition, the more common response is denial. For this reason, these patients are often “lost to follow-up” in young adulthood and may not receive adequate care.
Later in life, adults with congenital heart disease suffer the typical burden of chronic diseases such as diabetes, but with more complications. In fact, any procedure or surgery for these patients is non-routine. Few doctors are familiar with congenital heart diseases, and therefore the tendency may be to overreact or to take excessive precautions.
Bhatt’s predecessor was something of a one-person operation, seeing more than 100 patients each week. After mimicking that approach for a few years, Bhatt came to believe that more time with and attention to each patient would both improve care and reduce system costs. Furthermore, she did not see how she could sustain such a tightly packed calendar indefinitely. She wanted a career that included research, papers, and presentations at conferences and a life that included raising a family. She set her sights on building a team.
She selected her team members diligently over a period of several years. In 2011, she added Doreen DeFaria Yeh, another cardiologist, as associate director and by 2016 had added a nurse practitioner, a nurse, a social worker, and an administrator. The addition of the nurse practitioner gave the team adequate capacity to offer fellowships.
Aspiring to achieve the best possible performance, Bhatt follows a few key principles. The first is focusing on overall team performance in the eyes of patients. This requires avoiding excessive blame of individual team members when errors are made. Bhatt points out that patients are full members of the team, especially when consequential medical decisions are to be made.
Another principle is effective communication. The team meets weekly to review priorities, both for patients and for improving the clinic’s operations. To make ad hoc interactions frequent and easy, team members sit at adjacent desks at work each day. Finally, team members work constantly to improve electronic communications between them to keep everyone on the same page and to prevent duplication of tasks.
Finally, Bhatt emphasizes openness to change. Team care implies a day-to- day work rhythm that is distant from that of mainstream health care. Team members who are eager to reimagine healthcare operations are highly valued. Bhatt reflected on the team’s administrator:
There are many young administrative assistants who are very willing to do things differently but don’t have much experience. Then there are many experienced assistants who know everything about how to run a clinic but are much less willing to change. We were lucky to get the best of both worlds—someone who was very well established in our organization and simultaneously eager to shake things up.
The range of services that Bhatt’s team provides expands as her team grows, but routine appointments still consume a substantial proportion of the team’s time. These appointments typically include complete exams and, on routine intervals that depend on the severity of the case, complete heart workups.
In-depth conversations with patients also are important. Because medications are crucial, Bhatt and her team endeavor to ensure that each patient understands the purpose of each medication. Interpreting the words that patients choose to describe symptoms can be tricky because individuals have widely varying understandings of what is “normal.” Some, for example, will report that they are asymptomatic but still have a very poor result on an exercise test.
The clinicians talk with patients about how they are living and try to guide them towards a middle ground between denial and anxiety. They look for signs of psychological distress and offer treatment when needed. They also look for signs of unmet social, emotional, financial, or even transportation needs that the team’s social worker can help address.
Adults with congenital heart disease often suffer unnecessarily from commonplace health conditions because there is so much attention to their rare heart condition that simpler matters, even those related to the heart, are easily overlooked. Bhatt’s team works to ensure normal health practices, such as cancer screenings, are attended to and the team generally expands the scope of checkups to include multiple system screens as patients age. Any health problem is more complicated for a patient with a heart defect; therefore, preventive steps are all the more valuable.
A recent ambition for Bhatt’s team has been to push as much care as possible into community settings, such as local primary care offices. Few adults with congenital heart disease live within convenient travel distance to a heart center. The clinic’s staff is working to empower primary care physicians and local cardiologists to do more, by sharing protocols for imaging tests, for example. In addition, Bhatt has begun experimenting with patient meetings over the Internet and has established a mechanism by which patients can readily schedule multiple related appointments back-to- back.
Coordinating care is a crucial and demanding task for the clinic. A top priority is keeping young patients in care as they move out of the pediatric care system. In Bhatt’s view, far too many are lost to follow-up during this transition, resulting in avoidable critical care episodes.
The team also works to coordinate care with other specialists. Any time a patient undergoes any kind of procedure at all, Bhatt and her team want to know. In many cases, the task is simply to reassure other physicians that the patient’s heart condition presents no complications or risks for the procedure. Such reassurance can reduce the likelihood of excessive caution and necessary care steps.
In other cases, a far more in-depth conversation is needed. Bhatt calls together an extended team of specialists each Monday afternoon to discuss patients who have a scheduled procedure at the hospital. There is a similar but separate meeting with OB/GYN doctors to discuss pregnancies. Those discussions focus on steps that can be taken to assure expectant mothers as much as possible that the pregnancy can proceed normally.
In the spring of 2016, Bhatt estimated that she needed to hire one more physician and one more nurse practitioner to fully meet the needs of the population she serves. She received approval for those hires in midsummer despite the reality that, like so many others in health care in 2016, she is in a bit of a financial limbo. If she were measured on the basis of strict fee-for- service accounting, she likely would have to cut back on some of the nonreimbursable activities that her team is engaged in. To forestall that possibility, Bhatt reviews the clinic’s financial statements regularly and ensures her team maximizes allowable billings.
Bhatt hopes to keep moving in the same direction she has been heading towards for several years—that is, towards better care for her patients at a lower cost to the system. Though she knows she must invest in analyses that provide stronger proof of the value of care her team is providing, she appears well positioned for a future of accountable care. In the interim, she is favorably situated as a small team within a large and profitable department run by colleagues who are eager to support her efforts.