A family-centered medical home is important in the care of all children. Many pediatricians feel that the medical home for children with special health care needs should be in the primary care setting.1 Care coordination is a core element of the medical home and optimal outcomes, especially for children with special health care needs, are dependent on successfully integrating care across multiple settings.2
In this article, the challenges and rewards of care coordination in a primary care setting are discussed from the perspective of a mother and a pediatrician.
Maya's life was one of complexity, where the typical developmental and emotional needs of a child needed to be balanced with the gradual accumulation of medical needs. What started during toddlerhood with frequent infections, acidosis, kidney stones, feeding issues, and other problems grew into a picture that pointed to multiple diagnoses but no unifying diagnosis. By the time she was age 3 years the consensus was metabolic disease, likely mitochondrial.
Because of this lack of clarity, we were bounced between doctors, with each treating the symptoms within their specialty and rarely talking to each other or addressing Maya's quality of life or our family goals. Over time we added a gastrostomy tube, jejunostomy tube, ileostomy, vesicostomy, central line, oxygen, and bilevel positive airway pressure. We were sent out of state for second and third opinions. We met doctors who continued to search for answers and others who were skeptical that there was anything wrong at all.
As I neared the end of my pediatric residency, the practice where I had done my weekly continuity clinic offered me a position if I could wait 2 or 3 years for their eldest physician to retire. At that point, one of the critical care attendings asked if I would be interested in doing a “mini-fellowship” with the hospital's relatively newly created complex care program, at that time called the “Special Needs Program.” I felt drawn to this opportunity and agreed to spend 3 years learning from two of the most patient-centered, intelligent, and hardworking physicians I knew, as well as the selfless and expert nurses who worked night and day to keep the program running.
When Maya was age 7 years she was an inpatient at our local hospital, struggling with enteral feedings and diarrhea. We could not maintain intravenous access and she was transferred to a children's hospital 4 hours away. After a rocky start culminating in a medical crisis 3 days after admission, we met a physician who had recently started what was then called the “Special Needs Program.” He reviewed her past records, consulted multiple specialists, and brought those specialists together to formulate a plan that would not only treat her complex medical needs, but address her as a whole person. After she was stabilized, we sat and discussed our goals and what was important to us as a family.
It was in the summer of 2006, as I walked the halls of the hospital as a fresh new attending, that I met a 7-year-old girl who would change my life. Maya had recently begun receiving care at our children's hospital while continuing to live several hours away. She had the biggest brown eyes, beautiful long hair, and a smile that lit up the room. She was also one of the most complex and challenging patients in our program. Many doctors at many institutions had seen her and done test after test to try to find a diagnosis. The most unifying diagnosis available was that of a mitochondrial disorder affecting predominantly her gastrointestinal tract, immune system, and nervous system.
Although my more experienced colleague and mentor was Maya's assigned physician, I helped care for Maya during many hospitalizations. Maya did not come to our hospital for every illness, as her local pediatrician did amazing things to keep her at home whenever possible.
Throughout all of Maya's admissions, her mother Holly was at her side. Holly's background prior to Maya's arrival had been as a registered nurse, and I quickly saw that she was one of the most organized and smart women I had ever met. She could maintain an around-the-clock intravenous medication schedule at home that rivaled that of an intensive care unit, and she was an expert at the art of asking good questions during rounds. As someone new to complex care, I was initially intimidated by her; however, she graciously allowed me into Maya's world and taught me many things I needed to know to help coordinate Maya's care during inpatient stays.
After years of driving to multiple appointments, our complex care nurse case manager was able to coordinate our visits so we were making fewer trips and achieving the maximum we could during each trip. The team coordinated with her primary care doctor back home and she was able to manage much of the day-to-day care and simple admissions for electrolyte management and intravenous immunoglobulin (IVIG).
When Maya's needs increased over time, they helped us relocate closer to the hospital. Fortunately, one of the complex care physicians that had recently left the program to practice in a local clinic was willing to take over Maya's primary care. This was a difficult transition as our primary care doctor had been our lifeline when we were living so far away, always standing with us in the face of adversity.
After 3 years with the Special Needs Program, the independent pediatrics office that had served as my continuity clinic offered me a job. In late 2009, I left the complex care world and joined the now-foreign primary care world. The call was less, the hours were better, and the stress was different but still present.
In the complex care world, I had academic time and off-service weeks to fill with chart reviews and the creation of medical summaries that took 6 to 8 hours per patient. We had nurse case managers and a social worker, and I had an administrative assistant who organized my world.
In this new primary care world I had joined, there was no one filling out forms, calling home care companies and nursing agencies, or brainstorming ideas with me about how to help a family access resources in the community. The stress now was not in the complexity of the patient, but in the struggle to get the paperwork, phone calls, documentation, and coordination of care done between clinic visits during office hours.
Six months into my new adventure in primary care I learned that the little girl with the big brown eyes was moving to the area, and her mother had chosen me to be her pediatrician. I was both honored and scared by this prospect, but I knew that if her mother entrusted her care to me then I would work tirelessly for her.
I worked Maya into my schedule for an initial appointment and walked into the room with no idea what a primary care visit with a child like this was supposed to look like. Maya, now age 11 years, greeted me by saying “Hi, Dr. Pepper!” (She had quickly noticed my love for Diet Dr. Pepper during inpatient rounds years earlier.) Holly and I began to talk through how we should go forward with our physician–patient relationship. She explained that Maya's previous pediatrician had seen her weekly. I wasn't sure that was necessary, so we settled on visits every 2 weeks. Holly then told me that Maya usually had laboratory tests drawn off her intravenous line twice weekly due to frequent fluctuations in electrolytes and blood counts despite constant total parenteral nutrition and lipids, and that Maya's pediatrician had managed that. With the help of the complex care team as a backup, I thought I might be able to handle that, so I agreed to take on that responsibility. We worked out the logistics of when to see Maya so that we had enough time to talk. We chose Wednesdays at 11:40 am as our regular time, as that would run into my allotted lunch to provide additional time.
Life fell into a rhythm of sick admissions and healthy home life interspersed with therapies and treatments. We worked as a team, finding ways to spend more time at home than at clinics and hospitals. We gave IVIG and other infusions at home, drew laboratory samples and dropped them off, and worked to normalize a life that was less than normal.
It did not take long for me to see that frequent visits were going to be in everyone's best interests, so we decided to a make our appointments weekly. At each visit we discussed three things: (1) important changes in Maya's condition over the past week, (2) assimilation of specialist, therapist, pharmacy, and nursing input into Maya's care, and (3) planning for upcoming events, whether they be vacations to Florida or road trips for a second opinion. Without fail, every appointment ended with Maya reminding me she needed a hug before she could leave.
In between appointments, Holly and I communicated on a regular basis. Sometimes there were weeks of quick messages letting Holly know that Maya's laboratory test results looked good. Other weeks there was daily communication as Maya developed a new issue or became ill. Sometimes our routine appointments were instantly changed when I took one look at Maya's face and knew she was getting sick. Having weekly appointments with her while she was well was a gift in this regard. I knew Maya's baseline well and formed a trust with her mother that allowed us both to listen to each other when we felt something was not right.
Over the years, I began to feel that my role in this complex and fragile girl's medical care was that of a fierce advocate. When a specialist was not considering the totality of Maya's underlying disease, I provided her mother with what I saw as the risks and benefits of following their recommendations. When two specialists differed in their recommendations, I contacted both to provide a generalist's perspective to see if a mutually agreeable plan could be created. When Maya's mother needed the information only a second opinion could provide, I created a brief summary with test results and notes centered around the question at hand and stopped by a next-day delivery service on the way home to assure it got there prior to the scheduled consultation.
Because we did so much of her care from our home, our admissions were typically to the intensive care unit (ICU) for a critical illness. In the ICU, care was managed by intensive care doctors who were great at resolving the crisis but were not focused on her long-term complex needs. Fortunately, our complex care team was able to remind everyone of our goals and bring continuity to her care. Maya's body did not respond as anticipated to many treatments. The complex care team was able to be present at rounds explaining Maya's nuances and history and providing guidance on why we chose specific treatments and what had worked well in the past.
Due to the time constraints and distance of my primary care office from the hospital, having a complex care team involved in Maya's care was invaluable to me. I could call their on-call line at all hours. The team there could do things I was unable to do from my office, such as look through a computed tomography scan with the radiologist or find a surgeon to discuss a complicated central line issue.
The last 3 years of Maya's life were some of the best and the worst. We were in uncharted territory. She had survived a particularly severe, life-altering septic shock episode and was left with residual liver damage. Those years were filled with an increased focus on quality of life and creation of moments and experiences outside of the hospital. The complex care team supported us, making sure we had the supplies we needed to take trips, providing us with an updated medical summary (including our plan for initial treatment if she became ill while traveling), and looking at options for hospitals at our destination.
As Maya's health began to deteriorate, the complex care team became integral in continuing her mother's goal of advocating for Maya's quality of life while at the same time leaving no stone unturned in looking for reversible causes of her decline. Maya began to have repeated admissions for new issues, and, although I did attempt to visit during each admission, I still had a full schedule of patients at the office. Given the communication over the years between myself and the team about goals, the complex care team was a bridge between inpatient and outpatient care that was invaluable.
It was our complex care team and primary care doctor who stood by our side the final months of Maya's life. Our team arranged for her to leave the hospital for one last trip to her favorite park and one last shopping trip to her favorite store. They made it possible for her to experience joy in her final days. They were there as we began to shift to supportive care, there as we changed her code status, and there as she took her last breath. Even now, when I wonder if we should have done anything differently, I still feel assured that we all did our best.
On October 6, 2017, I had preplanned a morning trip to the hospital to visit with Maya and Holly. Maya was suffering from liver failure, had been in the hospital for many weeks, and was not doing well. Upon my arrival I saw a group of people around Maya's bed, and at the center were her mother and her complex care team physician. A look at the monitor told me I had arrived just as she moved from this life to the next, and I will forever be grateful that she waited until I was there to leave. I got to say my goodbyes to my special Maya and got to be present with her mother that day. When there was nothing more I knew to do in those last weeks, I focused on just being present for both of them. And so, Maya taught me what it really means to be a physician.
I know that without the partnership between our pediatrician and our complex care team Maya's care would have remained fragmented and not focused on her needs to just be a kid. She would have spent many more days in the hospital and fewer days enjoying her extraordinary life.
The narratives here describe a mutually rewarding experience in achieving comprehensive and coordinated care for a child with medical complexity and her family. It must be noted, however, that their experience was atypical in some important ways.
Although some parents have difficulty finding information to help them understand their child's health conditions,3 Ms. Owens' nursing background and high health literacy resulted in her being a well-informed resource for the medical team. She was skilled in asking questions and advocating for her child in a manner that invited partnership with medical team members.
Also, whereas parents and pediatric residents have noted lack of training in the care of CMC as a challenge,3,4 Dr. Hansen had exposure to the medical care of CMC during residency and spent time learning care coordination in a multidisciplinary complex care program. This exposure and training made it less daunting to handle Maya's poly-pharmacy, multi-organ system involvement, and rare/unfamiliar diagnoses, all of which have been identified by providers as challenges in the care of CMC.5
Although these atypical factors contributed to their positive experience, there were also reproducible factors that affected care. Both parties prioritized time spent building a relationship. Families have identified the importance of physicians understanding and engaging with their child as a whole person,3,6 developing mutual trust that allows each party to be a respected member of the team,3,7 and developing relational continuity. Likewise, pediatricians have endorsed spending more time with families as a strategy to facilitate care coordination,5 and pediatric residents have noted the benefit of longitudinal relationships with CMC in improving their feelings of efficacy in caring for CMC, improving their understanding of families' priorities, and understanding their role as pediatricians.4 Ms. Owens and Dr. Hansen achieved this relationship over the course of many hospitalizations and weekly office visits, although similar benefits could be expected with deliberate attention and less frequent visits.
Meaningful communication and information-sharing among all parties, including portable summaries, emergency plans, and shared plans of care, have been identified repeatedly as key components of coordinated care for CMC.2,3,5–8 In this example, communication was facilitated by weekly visits during which Ms. Owens and Dr. Hansen discussed the input each had received from other participants on Maya's care team and decided how to incorporate that into Maya's shared plan of care. Emergency plans were handled by the complex care team as they were more readily available to facilitate emergency and inpatient care.
Ms. Owens and Dr. Hansen did face some of the challenges that are common to care coordination for CMC, some of which were overcome through their partnership with a complex care program that had been designed to follow patients, both inpatient and outpatient, in partnership with the primary care physician.9
Lack of personnel to assist with care coordination activities has been identified by pediatricians as a barrier to effective care coordination for CMC.10 This was Dr. Hansen's experience, and fortunately many of these activities were handled by the complex care team.
Parents have noted the importance of help navigating the health care system, including obtaining supplies, scheduling appointments and tests, and obtaining insurance coverage for various medical treatments.6 Although Ms. Owens was facile in navigating the system, the complex care team did provide support in this area.
Continuity of care, including relational continuity, informational continuity, and management continuity, has been identified by families as important.8 This was a key aspect of the success of the partnership between Ms. Owens, Dr. Hansen, and the complex care program. Frequent communication and in-person visits, attendance on inpatient rounds, and maintenance of updated care plans and emergency plans were crucial to maintaining continuity for Maya's care.
In summary, successful and mutually rewarding partnerships between pediatricians and CMC and their families can be facilitated by a focus on building relationships, meaningful and structured information-sharing, and, when possible, enlisting additional resources such as a complex care program.