For about 25 years, Anna Reisman, MD, has been practicing medicine, caring for patients as an internist.
Still, Reisman, professor of medicine (general medicine), couldn’t have imagined how difficult it would be for her family to make care decisions for her younger sister Deborah, who was intellectually disabled, nonverbal, and autistic. Deborah was diagnosed with breast cancer in her mid-40’s and died at 46.
Reisman and her family worked with the medical team to determine the best treatment options. They agonized over the decisions.
“I understood the complexities of each treatment option and why each would be incredibly difficult,” explained Reisman. “My other sister wanted Deborah to have every treatment. My family looked to me for guidance, but my medical training hadn’t provided me with any specific approaches to working with people with intellectual disabilities and cancer.”
In her new, hauntingly beautiful Perspective piece in the New England Journal of Medicine, Reisman shares the diagnostic and treatment challenges for her sister, along with her insights on “what has to change in health care.”
Reisman believes much can be learned from pediatrics.
“Many hospitals have a full team of professionals to help children with cancer – for example, pediatric oncology social workers and child-life specialists. Having a similarly multidisciplinary team to meet the complex needs of adults with intellectual disability could be really helpful,” said Reisman. “There is a lot of room for improvement.”
Reisman focused her essay on the difficult treatment decision process that has stuck with her over the years.
“In the moment, it felt like we chose the right approach. But then with time, I started to wonder why this population is so ignored. Why is our system not designed to take into account the needs of people that are intellectually disabled and nonverbal?”
Reisman praises her sister’s care team but wonders if the situation could have been managed better.
“My sister's doctors were wonderful. They cared about her and listened to our concerns. But what if we had access to specialists with expertise in navigating these particular situations? Would things have turned out differently? I don't know the answer to that.”
This isn’t the first time that Reisman authored a piece about her sister. She published another powerful New England Journal of Medicine Perspective piece in January 2016, reflecting on Deborah’s death and is working on a book inspired by her life and legacy.
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