{"id":10447,"date":"2011-10-11T21:38:06","date_gmt":"2011-10-12T01:38:06","guid":{"rendered":"http:\/\/pmedicine.org\/epatients\/?p=10447"},"modified":"2011-10-11T21:59:49","modified_gmt":"2011-10-12T01:59:49","slug":"when-i-became-a-patient","status":"publish","type":"post","link":"https:\/\/participatorymedicine.org\/epatients\/2011\/10\/when-i-became-a-patient.html","title":{"rendered":"“When I became a patient, I felt my identity slipping away.”"},"content":{"rendered":"

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Participatory medicine requires an empowered partnership, in which patients express their wants and pursue their goals in partnership with providers who hear them and work together.<\/em><\/p>\n

And that’s not just about the biology. In this powerful narrative, a hospital executive becomes a patient, sees what it’s like to be stripped of everything and not heard, and returns to speak directly to his C-suite peers. His experience will help caring professionals everywhere develop empathy – a good thing for any partnership.<\/em><\/p>\n

This originally appeared on NickDawson.net<\/a> as a post from Nick’s “father, hero and best friend, George Dawson.”<\/em><\/p>\n

\u201cIllness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.\u201d<\/p>\n

American author and activist\u00a0Susan Sontag<\/a>, Illness As Metaphor<\/em> (1978)<\/p>\n<\/blockquote>\n

My citizenship in that other place began on August 4, 2011. It came without much time to get ready. The week started with a routine visit to my primary care physician and ended with a diagnosis of cholangiocarcinoma (cancer of the common bile duct) at Johns Hopkins.<\/p>\n

For the past 30 years I have been a hospital CEO. Cancer caught up with me two months before my scheduled retirement as President and CEO of Centra<\/a>, a 6000 employee health system serving central and Southside Virginia. Aside from several outpatient procedures, I had never experienced a significant illness or injury. In some ways my professional career prepared me to be a patient. I am still learning about the gaps in that readiness.<\/p>\n

Throughout my career I have been very interested in what we have come to call “the patient experience.” Centra, like many health care systems, has focused intently on patient satisfaction and the various related topics and measures of how our patients feel about their care. We have been students of Quint Studer and his ideas about how to better serve. We have listened to Fred Lee tell us how Disney would do it. And we have benchmarked our performance against other healthcare systems using metrics from Press Ganey and the CMS HCAHPS reports.<\/p>\n

As a patient, I am learning new perspectives. One of these has to do with the loss of personal identify I felt as I entered Sontag\u2019s Kingdom of the Sick. In the Land of the Well, people know who I am. Certainly this fact relates, in part, to my role as the chief executive of a large organization in our community. But it\u2019s more than that. People also know me as a husband, a father, a skier and a guy who grows heirloom tomatoes. My friendships and associations go back 30 years. Just as each of us has a distinct fingerprint, every one of us has an identity that is unique and personalized.<\/p>\n

When I became a patient, I felt this identity slipping away. Immediately the focus was on my illness and treatment. There seemed to be little time to understand or consider the person who was hosting this particular cancer. I found myself trying to engage my nurses and doctors in conversation to establish some identity as an individual.<\/p>\n

In one sense, my feeling of personal anonymity is the product of a good thing. I chose my doctor and Hopkins as the place for my surgery because of their expertise and the large number of surgeries they perform on cases like mine. Some 300 patients a year receive Whipple procedures at Hopkins. It is a long and complex procedure and involves significant post-op care. I was an inpatient for nearly two weeks. At Hopkins the clinical pathway for this procedure is well established. Everybody on the treatment team knows each step of the process and his or her role. This is one reason why Hopkins has excellent outcomes for Whipple surgery patients.<\/p>\n

At Centra we don\u2019t perform Whipple procedures, but we do plenty of high volume procedures with excellent outcomes. Examples include cardiac catheterizations, total joint replacements and breast surgeries. Each treatment<\/em> has a well established clinical pathway and a clearly defined process. But my time as a patient makes me wonder how well we understand and accommodate the uniqueness of each of our patients<\/em>. How often do our patients feel the same loss of individual identity that I have felt?<\/p>\n

Some specific ideas:<\/strong><\/p>\n