Living Well with a Bad Diagnosis - Lung Disease

Tuesday, November 17, 2015

Partners in Care

I was mis-diagnosed. Most people with an ILD are mis-diagnosed. Most people with Hypersensitivity Pneumonitis are mis-diagnosed. I saw a local doctor in July but by August, I knew I had to go over his head. He was not sending me along to a pulmonologist and I was becoming sicker and sicker.

I took matters into my own hands by calling my endocrinologist to beg for a referral to my university hospital. I was in the chest clinic by October.

But, what makes this story end well is that I met Dr. K. the following May when she was hired as head of the clinic. Before that, there was no specific doctor in charge of my case, just a resident who was impossible to reach. I was floundering after the biopsy.

After all these years, I realized just recently that Dr. K. saved my life by taking me under her care. Pulmonary rehab! Testing for GERD! Testing to see if I could fly! Testing to see if I needed oxygen at night! I can't even remember all the tests she ran me through! She has driven my disease from the very beginning.

What happens if a patient never meets a Dr. K? What happens if a patient bumps up against doctors who resent the patient asking for a second opinion then won't even consider their report? What happens when they refused to even confer or work with other doctors?

We, as patients, have to be advocates for ourselves and educate ourselves while trying to deal with a fatal diagnosis and, frankly, being very sick. We are not doctors. We are not trained and being in that role is often terrifying.

A woman who interviewed us to be on the board at our hospital has taken a job on another continent. I love her position: Chief Experience Officer.

After a horrible personal experience, she dealt with "poor care-coordination, confusing communication and unreliable transitions and hands-offs, rushed or un-empathetic care, this invariably leads to increased anxiety, frustration, fear and misery." She also points to the latest research that shows a connection between a positive patient experience and improved outcomes.

It is a growing movement: to reduce patient suffering and provide seamless, compassionate, individualized and empathetic care experience, while also engaging them as partners in their care.

Wow. Doesn't that make so much sense? 

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