Doctors have the thankless job of delivering what is often the worst news a family can receive: the terminal diagnosis of a loved one. Hear how Dr. Janel Ward copes with those conversations, and the challenges that inspired her to become a doctor.
By: Janel Ward
I have four beautiful children… but most of the time I say that I have two.
Currently, I work as a physician. One of the most difficult things about being a doctor is giving bad news to a patient or, more commonly, the family of the patient. It’s not the reaction of the patient, or their loved ones that makes those conversations difficult. The hard part is dealing with my own personal feelings, as I imagine how I would feel in that situation receiving similar news. The majority of the time, no one would be able to recognize how challenging it is for me to contain my emotions during “the discussion.” I probably come across a little bit like Dr. Spock from Star Trek: cold and emotionless. I have learned that I cannot communicate the necessary information or adequately take care of my patients if I allow myself to involve my emotions when treating a patient.
Most people go through various stages prior to accepting a dire diagnosis/prognosis and this includes anger and denial. By taking my emotions out of the situation, I allow my patients and their families the opportunity to direct a little bit of that anger and denial toward me. I can give them time to go through this stage without forcing them to face that which they are not ready to accept. I have learned that I can’t take their reactions personally. This helps me focus on providing my patient with the appropriate level of care, and allows me to care for my next patient as well. You might think that all doctors are really good at maintaining that professional distance, but I have passed many doctors and nurses standing in the stairwell, simply staring at the wall and wiping tears from their eyes.
Honestly, I hate knowing that I have taken hope from a patient. It would be so much easier to say, “We are doing all we can and believe that you are going to get better.” The face falling that occurs when a patient and their family understand that this is the end, that their disease is terminal, is heart wrenching. Each time I communicate this, in my heart I wonder if I am wrong and sincerely hope that I am; that I somehow misdiagnosed my patient and they are going to pull through. For this reason, saying the “D words”– death, dying, died – are really difficult for most doctors. Instead, I find myself using phrases like “There is nothing more I can do”, “This looks like the end”, or “(so and so) passed away”. Anything to avoid saying the dreaded “D words. It’s as if death is an enemy I can temporarily delay simply by avoiding those words.” But death is not always the enemy. I have seen enough in my life to understand there are things worse than death.
So, why do I often tell people that I only have two children instead of four? I do that to avoid the explanation and looks of sympathy…
I had my first, Nathan, when I was 20 years old. Despite being a new and inexperienced mother, I came to feel that something was wrong with my baby boy. He wouldn’t track me with his eyes and he didn’t try to lift his head. I had difficulty keeping him awake long enough for him to eat. I took him in to his doctor multiple times and each time was told that I was overreacting and that children develop at different rates.
One day, as I was reaching for a diaper to change Nathan, he had a seizure. His arms and legs alternated between stiff and floppy, and his mouth twisted in a grotesque manner. It only lasted for a second or two, but I knew that this was serious. I called a friend, and we rushed him into the doctor’s office. Due to subsequent seizures, Nathan quickly ended up in the hospital with a neurologist. I will never forget her telling us that Nathan likely had a neuro-degenerative disorder and likely would not have a long life. It sounds strange, but looking back, I wish I could thank her for her honesty. I didn’t thank her at that time, but her honesty helped my husband and I learn to really see Nathan and appreciate every little thing he learned to do.
In time, my husband and I were informed that Nathan had Nonketotic Hyperglycinemia (NKH), a rare disorder that prevents the body from breaking down glycine, an amino acid used as a building block of proteins in our bodies. The excess glycine causes over stimulation of brain cells and eventually cell death. This was the cause of Nathan’s seizures and why they were so difficult to control. We were told that he would likely never play, walk or run as other children, and that he would continue to suffer neurological damage over the course of his short life.
He passed early on the morning of August 27th at our home in his bed. He was 4 years old.
Three sisters survived Nathan: Ashley, Catherine, and our youngest, Laura. Soon after Laura’s birth, she began experiencing the same symptoms as her brother. It was then that we knew this was truly a genetic disease. She eventually received the same NKH diagnosis that Nathan had previously received.
The month Laura was born, an experimental treatment for NKH was published. After her diagnosis, Laura was treated with dextromethorphan, the main ingredient in some cough syrups. It changed her life for the better! She had fewer seizures and a better quality of life. The treatment allowed her to live six years longer than brother. She passed at the age of 10.
My children are the most precious gift God could have given me. Although my eldest and my youngest didn’t move much and I never heard them speak, I felt their sweet spirits and they brightened my life. They taught me about love; that true love isn’t earned or conditional. Love, in it’s purest form, is a gift that God plants in our hearts. That gift of love makes life beautiful and worth living. In fighting for their lives and loving them, I found joy. After their deaths, I went to medical school and became a physician in a large part due to these two beautiful children and the love they taught me.
I have four beautiful children…