I was supposed to be living out a boyhood dream attending the Phillies’ spring training in Clearwater, Fla. I was supposed to be soaking up rays and watching new players.
Instead, I was looking at a doctor who was looking at me sternly and saying: “I want you in the hospital now. What you have could be fatal.”
It started a week earlier with a tickle in my throat. I’ve had this before, and inevitably it develops into a chest cold. Chest colds can be quite dangerous for those of us with quadriplegia, as many of our trunk muscles are paralyzed and we aren’t able to cough sufficiently. Usually, after a few days of treatment and antibiotics, I respond well. This was different.
After several days of fever, the congestion got worse, and I began to have trouble breathing. For anatomical reasons, sitting up in the wheelchair makes coughing a bit easier. And lying down in bed is awful. The congestion gets worse and coughing is impossible.
So when the doctor said I needed to be in the hospital, the thought of being confined to a bed with congested lungs unable to cough was terrifying. When I explained my fear to the doctor, he agreed to let me try to return home for 48 hours before going into the hospital, but suggested I sleep in my wheelchair.
When I left, I thanked the doctor for his time and concern, though I felt anything but thankful. All I could feel was fear. I was frightened about spending two nights in a wheelchair, and frightened about my congestion. Most of all, I was scared of losing my life gasping for air.
Ever since my accident 23 years ago, I’ve assumed I would die prematurely. I believed that one of my frequent urinary tract infections would turn septic and become fatal, or a chest cold would turn into pneumonia, or, because I have no sensation, a malignancy would develop out of control because I could not feel it. I always believed that one day, something regular would turn sour. And that night, as I became more ill every hour, everything seemed to be pointing in that direction.
The next morning I sought another opinion. This doctor looked in my eyes and smiled. She asked about my concerns. She did a comprehensive exam and explained the results and my options. As she spoke, she looked directly in my eyes and touched me. We tried a nebulizer treatment and discovered it improved my breathing slightly. She seemed truly happy with the results and was confident I wouldn’t need hospitalization.
As I left her office, my lungs were still pretty congested, but I could certainly breathe easier.
I contacted Dr. Herbert Adler, a clinical professor of psychiatry at Jefferson Hospital who has done research on the nature of doctor-patient relationships. He suggested that when I became so frightened after the first doctor visit, the fear itself contributed to my deteriorating condition.
It is well documented that stress and fear can harm the healing process. New research reveals that exposure to a caring relationship also helps people change physiologically. Stress hormones diminish and endorphins and serotonin increase when people experience compassion.
So what constitutes a caring relationship? After all, it was clear that the first doctor cared about my condition every bit as much as the second doctor.
When I asked Adler how we experience caring, he replied: “One of the most reliable ways we register it is through our senses (such as body movement, facial expressions, tone in one’s voice). By definition, it is outside of conscious awareness.” He went on to explain that empathy is “feeling felt.”
With the first doctor, he was concerned about my condition and went out of his way to see me with very little notice, and I could see the look of concern on his face. But using Adler’s definition, I did not experience empathy – I did not feel felt.
What I want of my doctors – in the moment before they put a hand on the door – is for them to just wonder what it is like to be sitting in that examining room as a 56-year-old man with quadriplegia and lung congestion. I asked Adler if this is reasonable to ask of a doctor, many of whom are required to see a new patient every 15 minutes.
There was a long, thoughtful pause during which he was clearly frustrated. “We all know that empathy is essential in a healing relationship,” he said. “But the way medicine is practiced today, empathy is very difficult. First of all, when a doctor is in the room with a patient, psychologically they are also in the room with a potential malpractice attorney and a managed-care provider. They worry about whether any given decision could result in a lawsuit, and they worry about whether they will have to justify this treatment to an unsympathetic managed-care provider. This drains the relationship and more than anything else interferes with empathy.”
Adler said empathy also depends on a doctor’s personality, experience with a previous patient, or feelings about a future one. A doctor will be more empathic on a good day than on a bad day.
Fair enough; doctors are only human. It’s unfair to ask superhuman compassion of them.
Nevertheless, I want my doctors to know they are working with a person and not an organ system. I want them to just understand that the person they are working with may have anxiety and a sense of helplessness, that their patient has a life he or she is anxious to return to and a family that is worried.
Despite the fact that I canceled my follow-up appointment 48 hours after my visit, my first doctor called to find out how I was. I told him I sought another opinion and felt I had turned the corner. He sounded relieved that I followed up and genuinely happy that I was feeling better. Before we said goodbye, I told him I was grateful for the call.
When I left his office two days earlier, I had felt I was in the hands of a terrific pulmonologist. After the call, I felt I was in the hands of a good doctor.