The Foglight - Invisible Life Challenges: When Doctors Miss the Life Circumstances of the Person in Front of Them

June 2024

Issue #12 June 2024

In This Issue:  Dr. Maissel’s thoughts on the importance of ensuring doctors understand a patient’s life circumstances. Without the full picture, diagnoses can be missed, and treatment plans can become disastrous. 

Invisible Life Challenges: When Doctors Miss the Life Circumstances of the Person in Front of Them

I’m going to tell you a story,” said Dr. Mandy Cohen, director of the Centers for Disease Control and Prevention, “a story about a time when I failed.” Giving the commencement address at Wake Forest University, Cohen spoke of a time when, despite good intentions, her actions, and the system she worked in, failed. Because, she said, “I didn’t do a good enough job learning about the person in front of me.”  

The story Cohen told the Wake Forest graduates—which was relayed to me by my friend Dwight Shepard—took place when she was training at Massachusetts General Hospital. She had a patient, “Jennifer,” who was losing her hair and feeling tired. Suspecting a thyroid issue, or maybe anemia, Cohen ordered a variety of tests, all of which came back normal. But Cohen’s nurse had an idea. He said to Cohen, “I think you should ask if she has enough to eat.” Cohen was incredulous—could this patient, a graduate student with insurance be going hungry?  

 “So I pulled it together,” Cohen said, “and I went into the room. I asked hard questions. But more importantly, I listened.” It turned out that Jennifer had fled an abusive relationship and was living in her car.  

Cohen was ashamed. “For eight weeks,” she said, “Jennifer had gone on being hungry and in unstable housing because of me.” Cohen had looked at this educated woman with cute clothes and crafted a narrative that was all wrong. And, Cohen said, the system was set up for blood tests and CAT scans, not for housing and food. 

That phrase, “miss the person in front of me” resonated. When I heard this story, I felt pangs of recognition. In today’s healthcare culture, it’s too easy to miss the person in front of you. Doctors see part of the story –but often fail to see the whole person.  

I’ll give some examples from my own work.

I was working with a woman who had been admitted to the hospital for back pain. She was also diabetic. Since her blood sugar was too high, the hospital doctors started her on insulin. Soon, her back pain was better. The hospitalist came by at 4 p.m. and told her she could go home. The hospitalist also said that at home she would inject a different amount of insulin twice a day using a table (called a sliding scale) to determine the exact amount of insulin based on her blood sugar reading.    

She had never given herself insulin and the idea scared her. She lived alone and was afraid of needles. And now she had to figure out how much insulin to give herself, correctly draw it up by putting a needle in a bottle, and then inject herself. 

 My client called me, panicked. She wanted to go home but was desperately uncomfortable leaving the hospital. She’d seen the nurses give insulin but hadn’t done it herself. She didn’t feel great and continued to have some pain. She was tired and became overwhelmed. How would she get home? Get food, medicine, and needles that evening? 

 I told her to appeal her discharge. “Don’t leave the hospital until you have learned what to do and practiced giving yourself insulin,” I said.  In the meantime, we would figure out all the other pieces.

The discharge planner came by, and my client put her on the phone with me. I told her it wasn’t safe to send a diabetic newly on insulin home who didn’t know how to give herself insulin. I asked the discharge planner to request that the diabetic educator and nurse teach my client how to determine the right amount of insulin, practice drawing it up herself, and then inject it. I made it clear she wasn't leaving until she was able to do so independently.   

That night, she practiced giving herself shots for the first time. The next morning, after she did everything right at breakfast, she was agreeable to the discharge, feeling much more comfortable managing at home.

The hospitalist who tried to discharge her assumed she had transportation, that someone would pick up her insulin prescription, and that she would immediately be able to inject herself correctly with insulin. He also took it for granted that she had food at home—crucial for a diabetic. These assumptions were made by a doctor who had focused on one aspect of the patient: her medical condition. He prescribed the correct treatment for diabetes but didn’t consider what would be needed for his orders to be implemented. He did not see her as a whole person. Like Dr. Cohen, whose patient was living in a car, this hospitalist did not consider the living conditions of the woman, her support system, or her full range of emotional and physical needs. Logistically, until she had a plan in place for all those needs—something I helped with—it wasn’t reasonable for her to go home. 

 I also think of a woman in her early nineties (yes, nineties) who needed a hip replacement. Her orthopedist wanted her to go home straight from the hospital, reasoning that it was safer for her to recuperate at home than in sub-acute rehab, where it’s so easy to catch a bug. But he did not think of who would help her shower, or go to the bathroom, while her mobility was compromised after the surgery.  

She decided she did prefer to recover at home, not rehab, so I told her she would need caregivers in place for at least a month. The only person she lived with was her husband—who had Alzheimer’s disease. In fact, she was the primary caretaker for him. I helped her plan for her family to be there around the clock for the first two weeks after her surgery, after which hired aids would come for as long as needed.   

After her hip replacement, she could barely move. She needed help rolling in bed.  After the two weeks of family caregivers, she ended up needing aides for another six weeks.  She was surprised and dismayed by how long It took her to be able to get off the toilet on her own. She was also shocked by how tired she felt, and by how long it took her to recover enough to care for her husband again.

These doctors are not indifferent, and they are not obtuse. However, they sometimes fail to grasp that even a patient with good mental faculties may face invisible challenges. Although doctors take a standard social history—asking if their patients drink, smoke, or take other drugs, for example—they often fail to inquire about the whole person including whom the patient lives with and what care they can provide.

Long gone are the days when people didn’t leave the hospital until they recovered. Now people recover after illness or injury at home or in rehab. When they go home, insurance often doesn’t pay for much of the required care (but that’s a topic for another essay).

Even something as simple as knowing how many flights a patient must climb at home—I had one client, being discharged from subacute rehab, who lived in a third-floor walkup, with stairs she was not nearly ready to climb—can be crucial to a patient’s safe recovery. And that’s where an advocate like me comes in.

As Mandy Cohen noted, the current system is not set up to look at the patient as a whole person; the incentives are for testing, not for asking questions. But asking questions—and then listening to answers—is, or should be, the soul of what we do. 

Email me with your questions, comments, or subscription requests at gm@mymdadvisor.com. I’d love to hear from you.

Warmly,

Gerda Maissel, MD, BCPA

Dr. Gerda Maissel, Author

Dr. Maissel is a Board-Certified Physical Medicine and Rehabilitation physician and a Board-Certified Patient Advocate.