Dear Friends,
In this edition of From the Front Lines, I share my perspective on our fragmented healthcare system and emphasize how frequently overlooked details can profoundly impact patients. I also discuss the need for the healthcare system to meet patients where they are, particularly when a family receives a new diagnosis of a chronic disease. In a system that often prioritizes protocols designed for its own efficiency, we are reminded that patients’ needs are often not met by a “one size fits all” approach. Rather, families can easily become overwhelmed and confused, leaving them lost and unsure of where to turn for help.
Below, I detail a particularly complex example of this tension as experienced by one of BCP’s patients. This case illustrates the necessity for our medical and social systems to work closely together in order to effectively partner with families in managing challenging health needs. The medical system can’t do this alone.
Recently, a four-year-old patient with autism came for her well-child visit. This visit at BCP was just two short weeks after her grandmother brought her to BCP for a same-day sick visit: her grandmother had astutely noticed that the child was drinking too much water and urinating more frequently. During that urgent visit, I tested her blood glucose level, determined it was dangerously high, and transferred her for care at a local emergency department. The diagnosis of Type 1 Diabetes was confirmed, and she was admitted for treatment and education. A few days later, she was discharged from the hospital with a new diagnosis of this life-altering disease, new medical supplies, a new complicated approach to nutrition, and multiple follow-up visits scheduled with a variety of healthcare professionals. Most of these appointments were scheduled with the diabetes specialist at the hospital, and her usual four-year well visit was scheduled at BCP.
This patient’s mother is a young single mom with very little support systems in her life. She has been desperately trying to get her child enrolled in school, knowing that a structured routine is essential for her daughter, who has autism. BCP helped this child get signed up and placed on a waiting list for school, but at this point, she is still waiting for a placement. Without universal Pre-K in Massachusetts, children with autism can wait months or years for a school assignment.
Without any transportation options to get to her appointment at our office, the patient’s mother tried to cancel, but BCP staff knew how important it was for her to be seen, and arranged an Uber for them.
When I enter the exam room, Mom is very angry. She yells that she doesn’t have time for this visit and tells me I am 14 minutes late. She emphasizes that she needs to get to another appointment for herself. She continues to raise her voice, detailing that she has two diabetes appointments this week and there is no possible way she can go to both. Frustrated, she explains that every time she leaves the house she has to manage multiple bags - one for her daughter’s insulin (which she still has no way to keep cold) and another with food and a large binder that contains her daughter’s daily sheets to track her meals and
insulin calculations. She feels it is impossible to get out of the house with her daughter, who has both autism and diabetes. Overwhelmed by the new medical demands she is facing, she admits she doesn’t even understand what each of the many new appointments she is now juggling are for. Although there is a message to check her daughter’s portal, she is unable to log in. She is adamant that she cannot go to the diabetes specialist twice this week.
I continue to listen and I also understand her frustration.
Before doing anything else, I sit in the exam room and call the endocrinology department on speaker phone, so Mom and I can listen together and ask about the appointments for this week. We learn that tomorrow’s appointment is with a social worker and we ask if that can be switched to a virtual appointment. The receptionist says no as the first appointment, per the protocol, must be in person. I advocate on Mom’s behalf and ask if an exception can be made, given Mom’s inability to come in person, and ask that a message be sent to confirm the details and provide Mom’s email.
We also learn that the second appointment is for her pump class. Mom knows this appointment is more important for her and agrees she will attend. I also ask the receptionist for additional pages for her notebook. The receptionist says she will send a message to someone and I leave my email, kindly asking them to send more pages as soon as possible. In addition, we let the receptionist know that Mom is out of blood ketone strips because she was only given 10. She has urine strips, but since her child is still in diapers, those seem useless. She is also out of alcohol pads.
We also discover that the after-hours number that Mom has for on-call diabetes support is incorrect, so we update it in Mom’s phone. Mom has tried a different number unsuccessfully throughout the past week, which only added to her frustration and left her feeling alone and unsupported.
In the background, her daughter is opening every drawer in the exam room, taking out tongue depressors, and trying to open the door to leave the room. Mom calmly puts the tongue depressors back and stands in front of the door to prevent her from running out. Mom is deftly managing her daughter’s behavior throughout this stressful appointment. She is incredibly adept at doing what needs to be done for her daughter - it is just that the system has given her too little support with too complex a task.
Ironically, a diabetes nurse educator does get back to me about this, but she does not have the page we are looking for and isn’t sure how to find them. In the meantime, I bring one of the completed insulin tracking pages to our medical assistants who quickly create new, identical blank pages for Mom. Luckily, this is one problem our creative staff has easily and quickly solved.
As the visit continues, additional obstacles to the child’s health emerge. Mom shares that she doesn’t have enough money for food and she also lacks a cooler pack to keep the insulin cold when she leaves the house. For today, she has put some cold food with the insulin, which is all she could do in the absence of a proper cooler.
Thus far our front desk staff and our medical assistants have gone above and beyond their typical job descriptions to help this family. Now, a member of BCP’s care navigation team joins me in the visit. Together, we search on Amazon to find an appropriate cooler pack, for just five dollars. We order two of them to be sent to her home. Looking back, this would have been a simple yet invaluable piece of equipment to provide Mom when they were discharged from the hospital. Her hospital stay likely cost upwards of $15,000, yet a $5 cooler pack is not included in her discharge, creating a preventable disruption in care.
At this point, it has been about an hour of the entire BCP team working together to find solutions, and Mom is much calmer. Without help caring for her daughter during the day and no school program in place, she is struggling to get to the grocery store with her young, medically complex daughter. To ease this burden, we also order groceries and have them delivered to her home.
For a young child with diabetes, it is critical to have the right amount of food on hand, as insulin doses are calculated based on the planned meal. The insulin is administered, and you hope the toddler will eat the correct amount of carbs on which the dose was based. It's a complicated and stressful process for anyone—especially for a young, overwhelmed mom with little support and limited resources.
Mom is also provided with pull-ups, wipes, and even prepared meals from one of BCP’s community partners. While Mom is grateful for the meals, she needs to know the carb content in order to properly calculate the insulin dose. It is clear that Mom is paying attention and knows what her daughter needs. Together, we look up the carb estimates and she writes this down on top of the meals so the information is easily accessible - ensuring she will be able to give her daughter the right amount of insulin when needed.
Finally, I email her diabetes nurse educator, requesting a call with the team so we can develop a plan for Mom and her daughter - a plan that works for Mom and a plan that recognizes the immense complexity, both medically and socially, that Mom is facing at this time.
The mom who initially arrived yelling and screaming is now calm. We arrange an Uber ride to take her home, and a staff member walks her to the car. I remind her of tomorrow’s virtual social work appointment and let her know she can reach a provider at BCP 24 hours/day 7 days/week with any questions or concerns. She also now has the correct number for the diabetes nurse hotline.
The right number to call in case of an emergency, the correct pieces of paper to track her daughter's diabetes, and additional resources like a cooler pack and food make all the difference. But most importantly, it’s the support of a pediatric practice that listens to her and cares about her, even when she’s yelling at us, that is the true differentiator.
We were able to figure all of this out because we stopped, listened to her, validated her concerns, and gave her the space she needed to process what was happening. Far too often, patients who struggle are labeled by the medical system as “non-compliant”. This is unfair and fails to account for the systemic social challenges that influence a family’s ability to care for their child, or the barriers the medical system itself creates. Patients so often feel shame and alienation while interacting with healthcare providers.
At BCP we think: “Of course she is screaming and angry.” Her daughter, who already has very significant autism, has just been diagnosed with another very serious chronic medical condition. At every moment, her mother is worried about her daughter’s life. She’s terrified: terrified that she is going to make a mistake that could harm her daughter; that she’s not going to have enough resources to fully take care of her daughter; and that she doesn’t have a routine that she has desperately been asking for, in order to take care of her daughter.
Her anger is completely justified - the system has failed her - the school system, the medical system, and the social support system. At BCP we were able to slow down, listen, and center the family in a position of dignity and partnership. This is the goal of BCP.
The broken medical system doesn’t make space for providers to collaborate to best support this family. The broken social system has yet to provide a classroom for a four-year-old child with severe autism. This is the broken system we are desperately trying to fix at BCP.
Sincerely,
Dr. Robyn Riseberg
Founder, Boston Community Pediatrics
Stay tuned for further updates From the Front Lines, and do not hesitate to send us your questions, thoughts, and feedback.