10pm, New Year's Eve 2002
My son Mike called me: “I'm numb on my right side.” My heart screamed. My boy already had a stage 4 melanoma removed from his neck a year ago, followed by lymph node removal and a course of interferon. “Go to the Emergency Department,” I told him.
The next day a metastasized tumor the size of a grape was removed from his brain. Soon he had a lung tumor the size of an orange removed. Once sufficiently recovered from the surgeries, he began treatment at the cancer center close to his college home. A team including me, my wife and the parents of his girlfriend (who lived near their college home) alternated accompanying Mike on his visits to the cancer center. At the cancer center, they wouldn't talk prognosis and Mike never felt that he had the information he needed. “Am I going to die? What does 5% chance of anything mean? I'm 26!”The clinicians seemed to speak to us, his parents, more than Mike. After a particularly frustrating session with the oncologist, I asked him if I could arranged a consultation in the cancer center near us. He agreed. I did. What a difference. Mike immediately bonded with the radiation oncologist, who asked to speak with Mike alone. After an hour, Mike came out.
“I'm probably going to die, but there's stuff we can try. Oh well, I wasn't born with a tattoo telling me how long I had to live.”
Mike died on November 18th, 2002. But while he lived, Mike was pretty clear about what he wanted. He was willing to try anything, but his quality of life came first.
Clarity is Power
In healthcare, “clarity” usually means getting the information you need, when you need it, in a manner you can absorb. And while that’s true, that definition is also somewhat limiting. For Mike, “clarity” also meant being clear with his medical team about his values and priorities.
His superstar radiation oncologist told us that Mike's clarity around his values and preferences made it much easier to offer and frame treatment options. It also gave the oncologist confidence that, once a course of treatment was decided, their mutually agreed upon plan would be followed.
People typically use “health literacy” to mean the degree to which individuals have the capacity to obtain, process, and understand basic health information needed to make health decisions. The other side of the coin is, what I call, “life literacy”: the degree to which clinicians can obtain, comprehend and process information about their patients and their lives, to understand how their lives impact their values, preferences and healthcare decisions. One does not come without the other, and Mike’s radiation oncologist did this well.
At 87 my mom was diagnosed with pancreatic cancer and she, like Mike, had clarity around how she wanted to proceed with her care.
“I've had a good life. I don't want to be in the hospital. I want to stay home.”
Yet, her challenges were similar to Mike’s prior to working with his rockstar radiation oncologist:
- Information communicated by clinicians was unclear
- Clinicians spoke primarily to me, not to her
- And they were recommending surgery and chemo, despite my mother’s preferences
“Come on, it’s simple,” she would say. “I need help with the P's: Pillow, pills, and pain.”
It drove her nuts that she couldn't get through to them. We ended up finding a better team who listened carefully, recognized her clarity, and built a plan to accommodate her preferences. She died December 22, 2014 - at home.
Clarity IS power, but it’s a two-way street amongst patients and their providers. How can we equip clinicians to better elicit and comprehend patient choice and values? It would help us serve patients better.
Danny van Leeuwen is an ePatient (Multiple Sclerosis), a caregiver, a nurse, and a leader. As a change catalyst, Danny specializes in guiding complex projects to completion using his broad experience and skills: performance improvement, operations work flow, networking and collaboration, information systems and mobile health, meaningful use, data analysis, and health care policy. He has attained national recognition for his published works in the Joint Commission Journal on Quality Safety and the Journal for Healthcare Quality, where he was an editor for 15 years.