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On Friday afternoon of Labor Day weekend two years ago, my doctor called to tell me that the pathology report from a recent endoscopy showed that I had stomach cancer.
Maybe you can imagine what happened next.
At the time, I thought I could, since I had heard similar news three times before. But all my experience and all my expertise in health care did little to prepare me to meet the steep demands to find the right doctors and hospitals, choose the best treatments and then coordinate and participate fully in my care in the days following that phone call.
Health care delivery is changing rapidly as technology advances and as health reform policies to reduce cost and improve quality and safety are implemented. But realizing the full potential of these changes rests on the often implicit assumption that we and our families knowledgeably and actively participate in our care.
The essays collected here reflect on what it felt like as a patient with a serious illness to do this, to cobble together a plan with my clinicians that works and to slog through the treatments in the hope that my cancer will be contained or cured and that I will be able to resume the interesting life I love.
How Easily We Can Misinterpret the Benefits of Patient-Centered Innovation!
May 8, 2013
Here's the bad news: We will not benefit from the health care services, drugs, tests and procedures available to us unless we pay attention, learn about our choices, interact with our clinicians and follow through on the plans we make together.
The "True Grit"-tiness of Sharing Health Care Decisions with Our Doctors
May 1, 2013
In the Coen brothers remake of the 1969 movie True Grit, Mattie Ross, an intrepid 14-year-old, is determined to hunt down and kill the man who murdered her father. To accomplish this, she hires U.S. Marshal Rooster Cogburn, (played by a mumbling Jeff Bridges) a rough, one-eyed veteran of many such quests then announces that she plans to come along. She figures she is prepared.
Bad Language: Words One Patient Won't Use (and Hopes You Won't Either)
April 24, 2013
When I read Trudy Lieberman’s post yesterday, I was reminded that the highly charged political debates about reforming American health care have provided tempting opportunities to rename the people who receive health services. But because the impetus for this change has been prompted by cost and quality concerns of health care payers, researchers and policy experts rather than emanating from us out of our own needs, some odd words have been called into service.
Whose Patient Engagement Goals Are We Talking About?
April 17, 2013
What we look for when we participate actively in our health care differs from what our clinicians, employers and health plans believe will result when we shift from being passive to active participants. We don't have the same goals in mind. Does this matter?
Has Patient Engagement Stalled?
April 10, 2013
A few discouraging reports on patient engagement have skittered across my desk in the past few weeks. What's going on? Why are so many of us so slow to engage in our care when it is increasingly clear that we will do better if we participate more fully? Here's what I suspect...
