Friday, September 14, 2012

'Everytime I see her I feel guilt:' A doctor's story

An article in the American Journal of Medical Genetics on how geneticists can "improve their abilities to hear and honour patients' stories by writing and sharing stories with patients and with each other" is fascinating and heartening.

In 2010 we interviewed Dr. Rita Charon, who founded the Narrative Medicine program at Columbia University. She described narrative medicine as "the way a nurse or doctor or social worker or therapist might take care of you if they know that you have something important to tell about your situation and if they know that they have to get good at hearing what you tell."

According to the new American Journal of Medical Genetics article, doctors can get better at hearing, interpreting, and being moved by patient stories through a number of techniques, including reading and discussing literary works; writing out the patient's story without medical jargon; reflecting on how they think and feel about a patient and their interactions; and writing their own stories.

"Doctors write stories to give voice to the human element of the illness story that modern medicine has taught them to ignore," says author Dr. Malgorzata Nowaczyk, a pediatrician and geneticist at McMaster University in Hamilton, Ont.

"Doctors' stories can be as powerful as patients' stories, but doctors rarely allow themselves to tell them. But to end the silence on both sides of the patient-doctor divide these stories need to be shared."

Here is a story by a clinical geneticist that Dr. Nowaczyk shares:

"I saw Hannah today. Yet another of my professional successes. Not a single straight bone in her eight-year-old body. I have known her since before she was born, when the gray and black images coalesced to reveal a malformed spine, bowed arms and legs and bent ribs. I told the parents what to expect, over and over again. They continued the pregnancy. They tell all that I am the only doctor who never gave up on her.

"Now eight years later, after almost a year in [the] intensive care unit, after many times spent in the hospital with a breathing tube and on ventilator support -- her chest and lungs are too small, you see, she receives oxygen by a hole in her throat -- she is still here. She is learning to speak in sentences -- very short ones because of the breathing problems, and she is learning to use a motorized wheelchair. She cannot stand and spends most of her time lying on her side, her back bent backwards in a small C. Her eyes squint and tear at bright lights.

"She loves her eight-month-old brother Jack who is already bigger than she is. She loves her school and wants to be just like the Little People doctor she watches on The Learning Channel. We have not been able to get in touch with her, although I phoned her office directly. In spite of my efforts her skeletal dysplasia remains undiagnosed.

"Every time I see her I feel guilt -- guilt at not preventing her birth. She looks so misshapen, so uncomfortable. Finally, I started to talk about her to other people involved in her care -- her tracheostomy nurse, her G-tube nurse, her respiratory therapist. And the intensivist who has kept her alive during all her ICU admissions.

They tell me that she is doing great, that her parents are happy to have her and would not change a thing about her life, that she is a star in her school, that her classmates wait for her, because she knows the right answers, that she has won provincial awards. I need to hear these stories over and over again."

AM J Med Genet Part A 158A:1941-1947


I really like this... I like that the doctor was supportive, honest, and that even though the doctor later wondered if her life was good, etc as she looked so uncomfortable, was wrong.

Great story.

I really like this too and I plan to share it with my friends who work in healthcare providing patient and family centred care. Thanks for sharing this, Louise.

I found it so valuable to hear how responsible the geneticist felt for the girl and his sincere hope that she have a good quality of life.

Hearing about how professionals wrestle with ethical issues will bring professionals and families much closer together in understanding. It would be wonderful to read more stories from doctors, nurses, social workers, therapists who works with children with disabilities.