Her tongue licks at her raw lips. Sadie M.’s sister speaks for her. It hurts to eat or drink, she says. When I suggest IV fluids might help her feel better, Sadie M. holds out her thin arms, bruised from countless IVs, chemotherapy infusions and blood draws. Running IV fluid will require a deeper vein. She catches me spying her neck and says, “Don’t even think about it, doctor.”
A few weeks earlier, Sadie M. left the hospital against the doctor’s advice. She dropped out of hospice. Dropped out. What does that mean? Now, at this late hour, she comes to the ER. The complaint: “Not feeling right.”
—Can you be more specific?
I desperately want to help her. She’s not even 50, but years are a poor metric for what her body has endured. The whites of her eyes are jaundiced. So is the look she gives me.
--Help? I don’t need your help.
Her sister begs me to do something. Please. Her medical record contains the smallest details of her battle with metastatic breast cancer. And yet, despite everything I know about Sadie M.’s case, the endless tests and treatments, I’m lost in this moment. I have a weak grip on her story.
A medical case shouldn’t be confused with a patient’s story. A case is a problem, and our job is to find the solution: What happened? What hurts? What makes it better or worse? But a story is about a person who struggles. Stories ask "Why?"
Sadie M. cut short her last hospital stay and left against the advice of her doctors. So why is she back saying she doesn’t want my help?
A medical case shouldn’t be confused with a patient’s story.
I ask about her day, up to the moment she decided to come to the ER. This evening, she'd left several messages with her doctor’s group. Each time she was ushered into a heartless maze of pleasant artificial voices. But nobody called back. Her frustration finally reached a boil.
From her sister’s eye-roll, I sense the scene wasn’t pretty.
--When my doctor first told me about the lump, he said we were going through this together. When it got real bad and I said enough chemo, where’s he at? I don’t see him.
The patient’s story is an attempt to find words for experiences that are often complicated, mysterious and as unique as a fingerprint. Technology cannot take these measurements. However, I believe clinicians' ability to understand stories, a skill that have served us well for ages, is still the most cost-effective and finely tuned instrument in the modern practice of precision medicine.
I listen as Sadie M. complains about her doctors, troubles with her kids and grandkids, why she almost punched the hospice nurse. I hear everything except the reason why she’s here.
Notes from doctors, social workers, and mental health counselors describe meetings that abruptly ended. But Sadie M. wasn’t always fighting. For a time, they described her as “pleasant.”
In my experience, difficult patients are often people with difficult stories. And what’s left out and unspoken is often at the heart of a patient’s deepest concerns.
I can’t tell whether she wants to cry or throw a left hook.
Sadie M. looks like a fallen sparrow, but her sister boasts how she was once a bulldog. She raised her kids as a single mom. She is a fighter, someone who punched first and asked questions later. This unexpected phrase makes me chuckle. Sadie M. cuts me a look.
--You want me to show you?
Sadie M. brushes her sister away. She rebuffs my offer to make her comfortable. No meds to ease her pain or calm her nausea.
I ask her a hypothetical question. If I had the power to fix any problem, what would that be?
I expect her to say kick cancer. Instead, she says she doesn’t want to die like this.
I lower my head.
--Can I give you a hand in this fight?
--What? You don’t think I got this?”
I look away. This is the line I didn’t know I was waiting for.
Arthur Frank said that patients' stories aren't only about illness. Patients talk to clinicians during times when they’re struggling with "fatigue, fear, pain and uncertainty." Certain fundamental problems in medicine occur because clinicians don't see their patients as protagonists, and the first move in treatment involves making patients the center of their stories.
When I ask Sadie M. why she dropped out of hospice, she describes how she hated the way doctors talked about comfort care. Being made comfortable implied passivity. She didn’t want to be uncomfortable. But she lived her life fighting and she wanted to die the same way.
--This is a hard fight for anyone.
Her jaw stiffens. I can’t tell whether she wants to cry or throw a left hook.
--Maybe you can give her something for nausea. She needs to eat. To keep her strength.
Sadie M. nods at her sister’s request.
I can give her a dose of morphine, too, but she insists I send her home immediately after. The next day she died. Did she know the end was near? I suspect she did. What was the nature of her emergency visit? She never told me. Maybe she wanted to make one last stand. She might have lost a battle with cancer, but that wasn’t going to stop her from picking another fight.
(Sadie M.’s name and identifying details have been altered to protect patient privacy.)