Tips on Telling Your Patient Story for Better Health Care

When my 95-year-old Aunt Dorothy fell and shattered her hip, she was rushed to the emergency room, where she became extremely agitated as she was hooked up to beeping monitors and subjected to invasive tests and needles.

As her caregiver, I felt compelled to help the medical team see beyond the frail — albeit combative and confused — older patient, while also trying to calm and reassure her that she will be OK. When I shared Dorothy's story — how she graduated from the Art Institute of Chicago, taught herself French on her iPad at 90, and spent hours keeping vigil at the bedside of her friends during their final days — the health care team's approach changed dramatically.

She was no longer seen as just an agitated patient. She became a real person, with emotions, experiences and a history that demanded understanding and compassion. Her agitation was no longer a symptom to be managed, but a reflection of the pain and struggle she had endured. In that moment, Dorothy went from being a case to being a human being worthy of care, respect and empathy.

"Doctors and your medical team need to hear your patient story," says Barb Loeb, M.D., a recently retired physician and hospital system leader for Advocate Health in Downers Grove, Illinois. "Even simple stories with a little information about you can change the whole scenario."

"A cardiologist friend of mine told me about a patient he had at the VA," Loeb continues. "At first glance, the patient appeared disheveled and withdrawn. He was labeled as uncooperative and noncompliant. When my colleague asked, 'Tell me about yourself,' the patient looked up, his face brightened. 'Doctor,' he said, 'I'm a proud West Point graduate.' The energy in the room shifted. The patient began to communicate and get involved in his own care."

Stories are especially important, Loeb says, because physicians, on average, interrupt patients after just 11 seconds, according to the National Institutes of Health.

"When clinicians listen to the patients' stories without interruption, it profoundly transforms the health care dynamic, providing comfort, inspiration and insight to both parties," Loeb adds. "It can help patients feel seen, heard, understood, empowered and less alone. It also can yield clinically relevant information that might have been otherwise overlooked, and it helps doctors diagnose and effectively treat the patient's illness."

Elizabeth Tracey, a chaplain at Johns Hopkins Hospital in Baltimore, says stories are a vehicle for sharing humanity and enhancing empathy. "They are key to improving health care, both from the perspective of the provider and the patient."

"Every patient has a story that they bring into the doctor's office that goes beyond their symptoms (and the insurance numbers that make up their medical chart)," says Tracey, who also is director of the hospital's Health News feed. "I'm a huge advocate that patients must be advocates for themselves."

Tracey has championed the importance of patients fostering human connections through the This Is My Story program, a powerful patient story tool used at Johns Hopkins. It started as a way to connect COVID-19 patients with their families through brief audio files.

"By sharing personal details about patients' lives — whether it's about pets, hobbies or milestones — health care teams can better empathize with and understand the individuals in their care," she says.

Loeb and a growing number of health care providers across the globe find inspiration for storytelling as healing through the practice of narrative medicine, a discipline that guides health care professionals in the art of deep listening to patients who seek their help. Internist and literary scholar Rita Charon, M.D., coined the term and launched the Program in Narrative Medicine at Columbia University in 1996. The practice is now in medical humanities programs at 70 medical and osteopathic schools across the country.

"Your story can build trust, promote connection, and even help you get the right diagnosis and appropriate treatment plan," says Derek McCracken, a New York City-based health equity activist and educator. He teaches and trains in narrative medicine at Columbia University, Say Ah!, and Intellus Worldwide.

McCracken cautions that if you don't document and deliver your health story, "someone else may do it for you." That can be problematic for several reasons, including leaving out important information, leading to assumptions about you that aren't true and doesn't allow you a chance to correct errors in your chart or add helpful details."

This personal narrative not only aids in improving communication but also aligns with the wisdom of Sir William Osler, known as the founder of internal medicine. He famously said, "The good physician treats the disease; the great physician treats the patient who has the disease."

Jean Determan of Naperville, Illinois, knows this firsthand.

Determan, 77, was exhausted. Her husband, Tedd, 87, was nearing the final month of his life after a battle with small cell lung cancer. As his condition worsened, he ended up in a sterile, fluorescent-lit hospital room. "It felt as though the world around us had grown colder, quieter," she says. "His care seemed distant and mechanical; with no recognition of the vibrant life he had lived. I just prayed every day that he would not suffer."

Then, she heard how sharing a patient's story can change the approach to care. Inspired, she taped photos and news articles on the walls that depicted her husband's life.

"The shift was immediate," Determan says. "There was a change in the way everyone from the doctors to the chaplain to the palliative care person and the woman who cleaned the room spoke to Tedd. A gentler tone, a newfound respect in their eyes. They weren't just treating a patient anymore."

"He became Tedd," she says. "At one point I looked over and saw Tedd smiling. He loved that we were talking about him. His story changed everything."

Many patients are fortunate to have a caregiver who can help them articulate or give voice to their stories, but ultimately "it is important for you to quickly be able to articulate your patient story," McCracken says.

He shares these five tips for shaping your patient story:

1. Share your story with people who will listen — doctors, nurses, family, friends or even online communities that focus on health and well-being.

2. Provide facts that explain why you are telling your story — your health history, key challenges and experiences that matter to you. Include your medical background, symptoms and lifestyle factors.

3. Keep it short, between 75 and 150 words.

4. Remember that your story is ongoing. Update it as your health evolves, and be open to revising it over time.

5. Know your goal. Understand what you want to achieve with your story. Is it to educate others, improve your care or raise awareness about an issue? Be clear on your purpose.