Anna Reisman, MD, has been practicing medicine as an internal medicine physician and treating patients for nearly 25 years.
Still, Reisman, a professor of medicine, could never have imagined how difficult it would be for her family to make caregiving decisions for her sister, Deborah, who was intellectually disabled, nonverbal, and autistic, was diagnosed with breast cancer in her mid-40s, and died at age 46.
Reisman and her family worked with their medical team to determine the best course of treatment. They agonized over the decision.
“I understood the complexities of each treatment option and why each one was so difficult,” Reisman explains. “My other sister wanted Deborah to receive all the treatments she could. The family looked to me for guidance, but my medical education had not taught me a specific approach to working with people with intellectual disabilities or cancer.”
In a new and hauntingly beautiful perspective published in the New England Journal of Medicine, Reisman shares the challenges of her sister’s diagnosis and treatment, along with insights into “what must change in health care.”
Reisman believes there is a lot to learn from pediatrics.
“Many hospitals have teams of specialists to help kids with cancer, such as pediatric oncology social workers and child life specialists. Similarly, having a multidisciplinary team to meet the complex needs of adults with intellectual disabilities would be really helpful,” Reisman says. “There is a lot of room for improvement.”
Reisman focused her essay on the difficult treatment decision-making process that has dogged her for years.
“In the moment, it felt like we had chosen the right approach. But over time, I began to wonder why this population was being so ignored. Why aren’t our systems designed to take into account the needs of people with intellectual and non-verbal disabilities?”
Reisman praises her sister’s care team but questions whether 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 been able to go to a specialist with the expertise to deal with these unique circumstances? Would the outcome have been different? We don’t know.”
This is not the first time Reisman has written about her sister: in January 2016, she published a powerful piece in the New England Journal of Medicine’s Perspectives magazine reflecting on Deborah’s death, and she is currently working on a book inspired by her sister’s life and legacy.
The “Standards of Care” were published on October 21, 2023.
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