Letter #19

Dear Physician of the Future,

On a cold January day in 1999, my two month old son was admitted to the PICU of one of the top ten Children’s Hospitals, in respiratory distress. Five months later, my son left the PICU with a tube in his neck, a tube in his stomach and connected to a ventilator to support his breathing. My son was born with a congenital muscular dystrophy. As a result of his disease, my son has severe muscle weakness and is ventilator dependent 24/7. As the parent of a child with chronic and complex medical needs, it’s not only important to find a physician who is knowledgeable and skilled in his or her specialty, it’s perhaps more important to find a physician who will give me and my child his or her time, who will listen and who is willing to go the extra mile in this time of managed care. It’s important to find a physician who cares.

As my child’s physician, you need to understand that I was sent home with a medically fragile child and I had no choice but to learn how to care for him. Understand that I am capable of changing out a trach tube and replacing a gastrostomy button. I know how and when to suction my child’s airway. I can give breathing treatments, perform CPT and I can bag my child when he is in respiratory distress. I can trouble shoot a ventilator. If my child requires a hospital stay, don’t treat me like I don’t know how to care for him and don’t prohibit me from being an active participant in his care. Remember that I am part of the team and my vote counts in all decisions to be made. While I didn’t go to medical school, I know more about my child’s medical condition than you do and when I bring something to your attention, please genuinely consider it. Respect me.

Recognize that sometimes all I need for you to do is to listen as I vent my frustrations and my sadness. I don’t need you to have all the answers; I just need you to care. Make yourself accessible. Give me your email address and don’t be afraid to answer my questions in writing. Return my phone call the same day I leave a message. I will only email you or call you when I really need your help.

Due to his disease, my son cannot walk, talk or breathe on his own. Yet my son is a human being with feelings. When you walk into the room, acknowledge my son. Talk to him, he can hear. Look into his eyes, they will speak volumes to you. See his smile, it will light up the room.

I’d like to share with you an example of a simple gesture performed by one of my son’s physicians that I will always remember:

It was early one morning as I was sitting in the chair next to my son’s bed when the PICU intensivist came over to talk with me. What will always stay with me was this physician’s simple act of getting down on one knee so that he was eye level with me, rather than looking down on me, when he spoke. To most, this may seem like a meaningless, trivial gesture. On the contrary, it is indicative of the person this physician is. He is unassuming, his is respectful and he is kind. To this day, this physician has remained a part of our “team” – not as someone who provides hands-on care to my son but someone who is there to listen, to coordinate care and to offer words of support and encouragement. He is a physician who epitomizes what it means to practice medicine from the heart. It really is the little things that make all the difference. As someone who must develop long term relationships with physicians because of my son’s chronic condition, I have come to realize that, if I have to choose, I’ll take a physician who cares over one who is the “best”.

Over the last nine years, I’ve had the opportunity to spend a great deal of time in the presence of physicians. I’ve encountered the good, the bad and the indifferent. But, by and large, I’ve had the privilege of dealing with an exceptional team of physicians who have provided the best of care to my son. One of my biggest fears the day my son and I left the PICU was that of being abandoned by the people who – from my perspective – put me in this position in the first place. I’ve been very fortunate. I’ve not been abandoned, I’ve been embraced by several very special physicians who have done, and who continue to do, everything they can to ensure that my son and I have the best quality of life under the circumstances. They’ve not only cared for my son, they have cared for me. They have supported me, educated me, guided me and, in doing so, they have truly made it possible for me to “keep on keeping on”.

Be a physician who cares. Be a physician who practices medicine from the heart.

Godspeed.

Ann – mom to Jack
(www.jack-schrooten.blogspot.com)