The stories that patients tell me are always a gift

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My background in nursing has given me a perspective that many physicians don’t have. From the beginning of my career, I have valued the information that patients have provided me about the context of their lives, family, work, and beliefs. I have never cared for a knee or a prostate, but rather I have cared for a person whose life experiences have influenced their experience of illness. Of course, physicians have very different responsibilities to patients that I don’t have, and often context gets left out because the priority is to diagnose and treat. But for me, I think that if you really want to help someone, you have to understand the context of their lives because this influences if they are able to listen, what they will hear, and what they will do with the information we tell them.

Context is illuminating, and I believe it is central to our patients’ ability to cope with their illness and their adherence to our treatment plans. Every day I am reminded of this and every day I am grateful that I asked about the context of my patients’ lives because it tends to explain so much. When a patient seems angry, there is usually a reason. He may have been waiting for a long time for an appointment (I work in Canada, where wait times for specialist visits are much longer than in the U.S.) and his symptoms are bothersome and impacting his quality of life.

Anxiety manifests itself in all sorts of behaviors, and if we just react to behaviors we usually aren’t able to understand the root cause. Making a decision about treatment for cancer can be difficult for single people who don’t have the support of a partner/spouse. Young couples dealing with cancer in the midst of sleepless nights with a young baby may miss appointments or forget to take their medications on time. A gay man may choose not to disclose his sexual identity, due to negative experiences in his past, and so we may inadvertently provide him with information about sexual changes after surgery that do not apply to him. (While it is entirely within his rights to not tell us, we cannot tailor our information to the context of his life and, as a result, he may experience substandard care.) They’re not difficult patients — they have difficult lives.

I am interested in the context of my patients’ lives, and I have the luxury of time at each appointment that many of my physician colleagues do not. Part of my socialization as a nurse was to ask about the lives, hopes, and dreams of my patients. Patients experience their own illness in a different way than most of us were educated to ask about. I remember conversations I have had with physician and nurse colleagues where patients are described as “poor historians.” What is meant by this is usually that the patient tells a meandering tale when asked a simple question. But the question is usually just simple to the health care provider; to the patient, it is an opportunity to tell a story, to describe experiences, to explain the context. Our patients understand their illnesses as stories, while we tend to look for signs and symptoms.

Just this week I saw a single man with intermediate-risk prostate cancer. He has treatment options available to him, but his treatment choice will undoubtedly impact any future relationship he has. His concerns go beyond the immediate concerns about life or death; he is worried about the likelihood of establishing a romantic relationship if he cannot have reliable and rigid erections. That is his context. I also saw a couple where the woman cannot get over the scars, external and internal, from surgery for gynecologic cancer. She and her husband have three children under the age of 10, and they just can’t seem to find the time that they need to reconnect physically and emotionally. This is their context. And then there was the highly anxious man who colorectal cancer who consulted Dr. Google and got confused by what he read. He is a highly respected researcher and sorting through evidence is one of his strengths, except in this context — that of his own health and illness. He was not able to use his usual analytic skills because this time the subject was him.

The stories that patients tell me are always a gift. I learn about them and how they see their world. I learn about the human condition, about hope and loss and understanding and confusion, in ways which no textbook could every elucidate. I listen and ask questions, and in the time I have to spend with patients, I learn about what is important to them. The evidence we have most often does not take into consideration the context of the patient, their priorities, hopes, and dreams. The question, then, is how best to meld the evidence and the context and our respective strengths as providers of care.

Anne Katz is a certified sexual counselor and a clinical nurse specialist at a large, regional cancer center in Canada who blogs at ASCO Connection, where this post originally appeared. She can be reached at her self-titled site, Dr. Anne Katz.

Image credit: Shutterstock.com

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