“When I became a patient, I felt my identity slipping away.”

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.

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.

This originally appeared on NickDawson.net as a post from Nick’s “father, hero and best friend, George Dawson.”

“Illness 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.”

American author and activist Susan Sontag, Illness As Metaphor (1978)

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.

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 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.

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.

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’s 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’s 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.

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.

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.

At Centra we don’t 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 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. How often do our patients feel the same loss of individual identity that I have felt?

Some specific ideas:

  • It is about taking time to ask and listen to patients. In our daily rush to complete the social history screen in the Electronic Medical Record, do we really ask our patients who they are, and listen to their response?
  • It is about the symbols and customs we adopt. I have developed a adverse reaction to hospital gowns – the kind that are split up the back. For me the gown has become the symbol that I am in the Kingdom of the Sick. When I put one on, it’s a little like surrendering my passport. I wonder what other unnecessary symbols and props we have adopted in healthcare. And I wonder how often they serve to protect our status and control rather than serve our patients interests.
  • It is about the fragmentation in healthcare. Specialized intensive care units, hospitalists and multiple consultants have lead to greater clinical quality and efficiency. At the same time they are barriers to really knowing our patients.
  • It is about information. The better we understand the clinical pathway, the greater our opportunity and responsibility to explain it to our patients. If we listen as we do so, we have the opportunity to understand what alterations or modifications are needed to meet each patient’s unique needs. In doing so, we have a chance to increase patient ownership and responsibility for recovery. If we leave the patient out of the information loop the best we can hope for is a passive partner in the process.

I understand the difficulties those of us in healthcare face. Short length of stays, pressures on productivity, the complexities of our professions are real challenges. My lifelong experience in healthcare management tells me pressures like these make it hard.

So I will leave you with just one question: How well do you really know your patients?

 

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Posted in: e-patient stories | general | hc's problem list | pts as teachers | reforming hc | Why PM

 

 

Comments

5 Responses to ““When I became a patient, I felt my identity slipping away.””

  1. Jonena Relth says:

    Dave,
    Excellent post, as always. I think anyone who has been in a hospital, whether for something as serious as cancer or other illnesses, can relate to the “Kingdom of the Sick” and being treated as a patient # with a chart. Having a serious illness is a lonely road when you don’t have a personal physician that knows you as person – – not just a patient. As humans, we need assurance from someone that understands our strengths, weaknesses and fears and is able to “guide or coach” us through the illness. [Forgive the business metaphor]
    To go a bit further: I can see the value of hospitalists from the hospitals’ point of view. However, from as a person who has had chronic medical issues throughout my life, I would much prefer my personal physician manage my care in and out of the hospital. Just a kind word, hug and assurance from her helps me heal faster because she can help me he cope with the pain and fears with her kind smile that I relate to from knowing her personally. Jonena

  2. Nick Dawson says:

    Thank you Dave for helping to share this post!

  3. Susannah Fox says:

    Thank you for sharing this post. The line about “symbols and customs” struck a chord with me because of the recurring image of the split-back gown in Regina Holliday’s paintings. Here are two examples:

    http://reginaholliday.blogspot.com/2011/06/hitech-crossroads.html

    http://reginaholliday.blogspot.com/2011/06/new-day.html

    I’ve always found those images disturbing – more disturbing than seeing blood or needles. I have an instinct to reach out and close the gap, to preserve the patient’s dignity somehow, even though I know it’s a painting. Your post explains why I’m so deeply disturbed by those images. Thank you.

  4. […] the Society for Participatory Medicine’s blog: there is a post called “When I became a patient, I felt my identity slipping away.” Miscellanous […]

  5. […] this powerful article,  "When I became a patient, I felt my identity slipping away," ePatient Dave, a hospital executive who switched from "boardroom to hospital […]

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