On any given week, Dr. Bruce Reidenberg spends a good deal of time on the road. With his old fashioned black doctor’s bag in tow, he drives across three counties north of New York City to visit patients as the Hudson Valley region’s medical director for the New York State Office for People With Developmental Disabilities. In this role, he oversees the medical care of about 830 adults who legally qualify for state services. Some qualify because they have an intellectual disability, such as Fragile X syndrome, and have an IQ below 70—10 points less than what’s generally needed to graduate from high school. Others receive services due to autism, cerebral palsy, a severe seizure disorder, or some other disease or disability.
Some of these patients are only mildly disabled and can hold down a simple job; they typically live in supportive apartments or group homes and have standard health problems that can be managed by a primary care physician. But about half are severely disabled—with an intellectual disability that prevents them from understanding what’s going on around them and/or physical disabilities that make movement difficult. These people require highly specialized medical care, as well as someone to help them meet all their basic needs.
As medical director, Dr. Reidenberg handles administrative and logistical tasks, such as getting everyone vaccinated for the flu and shingles in a timely manner. But he also coordinates regular and end-of-life care for the sickest and most challenging patients. In some cases, he makes house calls and provides care himself. “For the really confusing and difficult patients, I’m the last resort,” says Dr. Reidenberg, who stresses that treating such complicated patients gives him immense personal satisfaction. “I like to develop relationships and be close to these families, who have advocated for these patients their entire lives. I like to understand their problems and work with them through a crisis.”
Dr. Reidenberg’s passion for his current job comes after many years in pharmaceutical research. After graduating from Weill Cornell Medicine and completing a residency in pediatrics at NewYork-Presbyterian/Weill Cornell Medical Center, he did fellowships at The Rockefeller University (in biology) and Mount Sinai Medical Center (in infectious diseases). Driven by what he calls “a passion for discovery,” he took a full-time job in clinical research for a division of Merck & Co. He continued in that field with positions at Novartis and Purdue Pharma; since 2009, he has been an independent consultant, working with small biotech companies on drugs for conditions ranging from asthma to Parkinson’s disease.
But Dr. Reidenberg has always kept a hand in the clinical realm — in part to inform his drug development work, but also to continue caring for patients, which he calls his first love and the reason he became a doctor. For years, he provided pro bono care in New York City emergency rooms, then worked with hospitalized children recovering from coma. He started caring for developmentally disabled adults and doing house calls for his current agency in 2011. When the previous medical director retired in 2016, he took over — glad for the opportunity to offer continuity of care and to improve his patients’ health and quality of life over time.
In many ways, Dr. Reidenberg notes, working with severely disabled adults is a natural fit, given his training in pediatrics. “Many of my patients can’t speak because they don’t understand what language is,” he says. “While taking care of them is a huge challenge, many of my skills from being a pediatrician transfer over to caring for a nonverbal adult, such as reading nonverbal cues and communicating with a parent or caregiver.” The position has also tapped into Dr. Reidenberg’s passion for problem solving, giving him the opportunity to address complex medical challenges that may come from unexpected places.
As an example, Dr. Reidenberg cites the question of whether to introduce a gastrostomy tube to feed patients who lose the ability to swallow—a common problem for developmentally disabled people as they age, including those with cerebral palsy and a variety of genetic disorders. “There are a great number of conditions that all lead down the same path,” Dr. Reidenberg says, “and result in difficulty swallowing.” When they reach their late thirties, many of these patients can no longer coordinate the voluntary and involuntary aspects of swallowing; the transfer from one aspect to the other happens at the airway, Dr. Reidenberg explains, which means that difficulty in swallowing can often lead to choking.
While the question of whether to insert a G-tube comes up quite often, Dr. Reidenberg says, it’s often a surprisingly complicated issue—in ways that may be opaque to practitioners outside his field. “In medical school, you learn to put in the G-tube as soon as someone has trouble swallowing, so they get nourished,” he says. “But for these patients, this comes with many repercussions.” For caregivers, spoon-feeding can take up to 90 minutes per meal, and it requires the patient’s total concentration to avoid choking; tube feeding, by contrast, takes just 10 minutes, eliminates the choking danger, and guarantees nutrition. But being orally fed greatly enhances quality of life for patients who don’t have many other sensory pleasures. Meanwhile, Dr. Reidenberg says, families place huge, negative symbolic value on the G-tube, often seeing its placement as a precursor to death.
But if a patient is hospitalized with a condition like pneumonia, or is otherwise too ill to concentrate on swallowing, medical staff may see the tube as a logical step, unaware of its symbolic import and potential long-term consequences (since oral feedings may not resume even after recovery). “These are the types of discussions that are very hard to have with physicians and families, especially in a busy hospital with multiple specialists,” Dr. Reidenberg says. “My role is to make sure all the priorities are aligned and help with the decision-making process.”
Advocating for these patients and their families is often emotionally intense, Dr. Reidenberg says. But the rewards energize him. “It has been a lesson in love for me to watch families support these patients—to continue visiting and taking them home on weekends,” he says. “It is a real honor to work with them, develop relationships with them and help them through difficult times.”
— Anne Machalinski
This story first appeared in Weill Cornell Medicine, Winter 2019