Gathering Information: The Illness Narrative
As we gather a patient’s history, we seek to both diagnose their disease and to understand their illness. For lay people, these two terms – illness and disease – may mean the same thing. But for physicians, there is a critical difference.
Illness describes a patient’s unique experience of symptoms, of being sick, which is influenced by biology, context, culture and support system. To provide patient-centered care, we must encourage people to share their story and elicit their perspective: the concerns, ideas, expectations, needs, and feelings about their illness.
Disease, on the other hand, can be defined as a disruption in normal biologic function at the cellular, organ, or system level. To diagnose a disease, we compare the details of our patient’s symptoms and signs with what we know about different disorders, using clinical reasoning to select and test for the most likely.
Most patients with a disease also have an illness – they somehow feel unwell – but many do not. A common example is diabetes, which is asymptomatic in its early stages but causes severe complications if untreated. And different people may be affected very differently by the same disease – their diagnosis is the same, but their illness is not. To optimize a patient’s care, we need to both diagnose their disease and understand their illness.
Ask your patient to tell the story in their own words. Encourage them to share what is most important to them, with open-ended questions, reflection and summary. Find out how it’s impacting their lives, and what they are hoping for now.
Eliciting a patient’s illness narrative will accomplish three things. First, hearing the story in a patient’s words can be diagnostically useful, painting a clearer and truer picture than the answers to a series of questions. Second, it will provide the context needed to develop a treatment plan. And third, simply telling one’s story can be therapeutic. Even as a first-year student, you can contribute to your patients’ healing simply by listening.
Patient Voices: The experience of illness
In this New York Times series, different patients with the same disease describe their unique experiences of illness, sharing the impact of disorders like Parkinson’s, ALS, or sickle cell anemia. The complete collection is available at the link below. You may need a subscription to view more than a few per month.
Here, we include stories of people living with bipolar disorder. The introduction says “Riding the ups and downs of bipolar disorder can cause havoc for those living with the disorder and their loved ones. Here are firsthand accounts of those living with bipolar disorder.”
Listen with intention to at least two of these stories. How are they similar? How are they different? How would hearing them help you to care for the whole person?
As you listen, think about:
- Who is this patient?
- How does this patient experience this illness?
- What are the patient’s ideas about the cause of the illness?
- What are the patient’s feelings about the illness?
- If applicable, what does the patient want from their healthcare now?
Reference & resources
Street RL, Makoul G et al (2009). How does communication heal? Pathways linking clinician-patient communication to health outcomes. Patient Education and Counseling. 74(3):295-301 LINK