Walking in their shoes

Pediatrics for Parents, April, 2004 by John E. Monaco

It is so easy to judge, isn't it. Unfortunately we do it all the time in medicine. Unlike other sciences, we sometimes have to act on hunches or experience ... experience based on the sum total of our own life experiences. We make assumptions of patients' lifestyles, their priorities and even their intelligence based on what we see and what we learn in a three to five minute conversation. Ironically, we tend to be the most judgmental when we are the youngest, and also the least experienced.

We physicians sometimes pretend to be experts in quality of life issues. We occasionally are a bit smug about "quality" being much more important than length of life, and have difficulty understanding, sometimes, why family members go to any length to keep family members alive, when we have already decided that the patient in question is no longer enjoying a life worth living.

I was reminded of this recently when I took care of a little girl named Courtney. She is a seven year old, quite unfortunate young lady whose main problem, the one for which she was being admitted to the hospital, was pneumonia. The list of her other problems, however, was so long that, at first, I thought the ER doctor was making them up just to play a joke on me. (Yes, occasionally this is done).

For starters, she had "cri du chat" (cry of the cat) syndrome, so named because of the unusual nature of these children's cry in infancy. This syndrome is usually caused by a chromosomal abnormality. Most importantly, it is accompanied by severe mental and developmental delay.

Courtney, for example was didn't talk, had limited use of her arms, and could not walk. On a good day, she could sit up in bed without assistance. She had undergone open heart surgery as an infant to fix two congenital heart anomalies. She had a large, mid-chest scar to prove this.

She had severe gastroesophageal reflux (backward flow of food from the stomach into the esophagus) requiring surgery. She now could only take food through a gastrostomy tube (a tube placed in her stomach), and was unable to take anything by mouth. Because of years of lying in bed, she had developed terrible scoliosis, or curvature of the spine, to such a degree that it compromised the function of her left lung, setting her up for repeated pneumonias. Surgical repair was planned in a few months.

Recently she had been found to have hypothyroidism, and was treated with synthetic thyroid hormone. She was on medicine to prevent her from having seizures. Everywhere her mother went she carried a full page long typed list of all her medicines and dosages to treat the multiplicity of Courtney's problems, any one of which had the potential to end her short life.

Before I even had a chance to make a regular hospital visit with her, I was having a conversation in the hall with one of our community pediatricians. "What a shame," he commented. "We do everything we can to keep these kids alive, and for what? The parents must know that there is no hope for meaningful life. It's such a waste of resources. Someone should really talk to them." He apparently did not intend to be the one to have this conversation, as he very quickly turned and hurried off to his busy office and full waiting room.

As I stood there and watched him walk down the hall, my head was still unconsciously shaking in agreement. He made good sense, I thought. This really was a waste. But what could I do about it now? She had been admitted with a fairly straight forward problem, pneumonia. My job was to fix that, as quickly as possible, and then to send this unfortunate family on its way. It was not my role to involve myself in sweeping medical ethical issues. That was for the priests and the judges, I thought to myself. Satisfied that I had this case in the proper context, I went in to meet Courtney and her parents.

What I saw and felt when I entered the little pediatric intensive care unit cubicle where Courtney had been placed, left me momentarily speechless, and forever changed. There, on the hospital bed, were Courtney's parents. They were in their early 30's, very nicely dressed with an air of approachable sophistication about them. Mother's obviously nicely groomed blonde hair was disheveled from a night in the emergency room, and Dad was dressed sharply and professionally, obviously planning to go on to work after he had talked with me. They smiled warmly and said "Good morning, Doctor," almost in unison. Between them was a lump in the bed, Courtney I assumed, completely under the covers except for a tuft of brown hair sucking out from the top. Mother was stroking her hair, while Dad rubbed her leg.

When doctors take histories from patients, we are usually in a hurry. We are taught to be good listeners and to let patients describe things in their own words, but we often become frustrated when the discussion tends toward the conversational and the patient digresses to areas they may think are important, but for which we have no interest or patience. It is then that we typically interrupt to try to get them back on the track ... in a sense to give us the answers we are looking for.