Let’s be clear. Without modern medicine, we would have buried our daughter ten years ago when the first of the terrible seizures she has had to live with since struck. This is no diatribe against individual doctors and nurses, but it is a cri de coeur against a system which stifles the practice of medicine and reduces doctors to automatons controlled by hospital administrators and insurance companies. Get ’em in, treat ’em, and get ’em out…fast.
So many of you reacted wistfully to the idealized sculpture of the Country Doctor I posted in the Weekly Photo Challenge noting that this hands-on, nurturing model of a doctor is gone. Long gone. I am the last person to romanticize what medicine was like 100 years ago before antibiotics and anesthesia. Women died in childbirth, polio crippled, scarlet fever blinded. Return to that? No, thank you.
But somehow among all the life-saving advances in medical technology, the crucial doctor-patient relationship has been trampled, nearly fatally. None other than the Wall St. Journal describes the dismal state of affairs in medicine today.
In an essay excerpted from his new book, “Doctored: The Disillusionment of an American Physician,” Dr. Sandeep Jauhar writes:
“When I look at my career at midlife, I realize that in many ways I have become the kind of doctor I never thought I’d be: impatient, occasionally indifferent, at times dismissive or paternalistic. Many of my colleagues are similarly struggling with the loss of their professional ideals.”
He goes on to describe the frightening decline in physician morale and the negative impact this malaise has on the most important face in medicine: the patient’s.
Meet our daughter, Jennifer.
Why the pink helmet? To protect, theoretically, against the terrible seizures which strike without warning, out of the blue, sending her crashing to the floor like a tree which has just been felled. In this picture, she has pushed it up a little bit off her forehead because it is so very hot and her skin grows irritated. You can imagine. She shrugs off the looks….rarely unkind, but always there…..and really, it is the least of her burdens in living with this terrible disease. The worst of it has been the loss of her bright light through brain injury. Repeated seizures will do that.
We live under the Sword of Damocles dreading the phone call informing that she has had another seizure and is on her way to the ER. Thursday was one such night.
Jen was getting ready for bed and had taken her helmet off when it hit. The result was a hideous “L” shaped gash to her forehead and a laceration of her eye. The ER stitched her up, scheduled an appointment for the next day with an eye surgeon, and sent her home.
The next morning while standing in the cafeteria of her residence, she seized again plummeting, helmet-attired, face-first into a table. By the time I got to the ER, they told me they were admitting her. Huge sigh of relief. Admitting her until they received the scans of her injuries and saw that, in addition to the new gash on her chin, her jaw was fractured. A transfer to the big teaching hospital in our city was necessary. And off we went, she via ambulance.
And there they treated her over eight long hours.
First the triage, then a parade of specialists. In comes the oral-maxillo MD who carefully and precisely stitches up the eye injury. Next the ENT MD to explain about the fractured jaw. Then the neurologist: Jennifer, who is the President? Can you touch your finger to your nose? Can you spell ocean? Can you tell me your mother’s name?
Each did their job, in and out, but not one doctor stopped to look at her as a whole entity – the human being – horribly injured by potentially deadly seizures which may – or may not- be ramping up for another out-of-control cycle. Seizures are most terrifying in their unpredictability.
That’s where I’m reminded of the Indian parable of the blind men and the elephant. Our specific ailments are being tended by specialists, yet the person, the individual human being in that bed, is invisible. She is a rope, a pillar, a tree branch, a hand fan. No one sees the elephant. And so it is easy for the attending physician to face me and tell me she cannot be admitted for even an overnight observation. I am to take her home. The blind men have spoken.
The nurse tells me they’ll bring Jen down to the sidewalk in front of the ER door. I weave my way through the hospital, into the cavernous parking garage, loop around the entire hospital complex to get to the ER door, and no Jen. I get out to look for her, an EMT tells me there’s a lady in a wheelchair in the waiting room. And that’s where I find my daughter. Sitting alone in a wheelchair. Bloodied hospital gown still on her. I rush up to steady her and help her into my car. Somebody sees me gathering up the back of her hospital gown and offers to help. He is appalled at her face. I say you must have to be hurt a lot worse than this to get a bed here. And he pulls up his shirt and tells me he’s been waiting since 2:30 that afternoon to see a doctor. His entire abdomen is bandaged; he had surgery two days ago and is in pain. He is scared and exhausted. I just want to get away.
And the beat goes on in my crazy little corner of the world. I am learning to prepare variations on gruel for the six weeks it will take Jen’s jaw to heal. And to clean and dress a head wound. And wonder what happens to all those other elephants in the ER.