Kevin Pho, M.D.

A third-year medical student walked into her patient’s room, and a nurse asked if she was there to take out the trash.

Akosua Y. Oppong, who was a third-year medical student when she recorded this episode in January 2021, says the nurse then said she thought she was there for the trash “because they sometimes wear black pants.” Oppong answered, “My scrubs are navy blue.”

She says “the only thing she noticed about me when I walked in that room was that I am a Black woman.”

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A woman learned she carried the Huntington’s gene. In the appointment, she asked what she was supposed to do now. The answer: “Well, you just go on living your life.”

That is how Erin Paterson, a writer and Huntington’s disease advocate, describes the moment after her genetic result.

She asked how she was supposed to do that, knowing what was coming. She was also told she would feel better in about three months.

Three months came and went. “I began to think, ‘Well, there must be something wrong with me if I don’t feel better.’”

So she looked for help herself. She sought out counseling on her own and saw several different therapists over the years, because she did not feel there had been much support from the medical system.

She was also making a decision about how to have a family, and she felt totally alone in it. She was new to the community and did not know anybody else who had tested positive for Huntington’s.

For years she kept her status from friends and customers. She worried that people would not want to be her friend and that shoppers would stop coming to her store. Then she started writing about it, and the things she feared did not happen.

Here is what she says the system should build:

1. Programs that are easy to access, “that we don’t have to go searching for.”
2. Support before the decision to test and after the result.
3. Help with how to move on with life, how to support loved ones, and how to become a caregiver.
4. Room for survivor’s guilt, which she names directly.

Her take-home: genetic testing can have long-term impacts on a person’s life, and we have to consider the mental and emotional needs of people receiving genetic information.

What is one thing a clinic could hand a patient on the day of a hard result so they are not left to search alone?

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A mother took her baby to checkups almost every day while doctors assumed it would pass. Then a puffy hand alarmed her.

Sophia Zilber, a patient advocate, says she called the doctor on call and said she “really would like to see the doctor today and not on Monday.” When the doctor saw the baby, she said, “I need to call an ambulance.”

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A medical student was told by her attending to go into a patient’s room alone and tell him he had tested positive for HIV.

Janet A. Jokela (@drjanetj), an infectious disease physician, says she was “a shy, trusting, kind of quiet medical student” in the mid-1980s and did as she was told. She says he more or less screamed and ran out of the room, and that she wishes she had spoken up.

She says of learners today: “we don’t put students or residents in situations like that. And we have their back.”

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A patient who had not had a cavity in decades said he would skip the routine X-rays at his dental cleaning, and was told the cleaning could not continue without them.

Aaron S. Rosenberg, a patient advocate, says the result was that no care was delivered. He says the dentist later conceded it was in-house policy and not necessarily the American Dental Association recommendation.

He says “informed refusal is also a patient right, and that right only exists if care remains available after a reasonable decline.”

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