Submitted by Cathy and Tom Hackett
Parents of courageous Sara Rose Hackett
Almost age six in Jan.2002 when she got her wings.
Sara Rose was welcomed into our family on February 5, 1996 at 11:35 p.m., the youngest of four children. We called her our angel from heaven, because she brought such beauty and love to all our lives. We would tell Sara a fairy tale about how she surprised us by falling out of the clouds into our arms. She would laugh and laugh, a contagious laugh that filled the room with happiness! Three weeks before Sara's 6th birthday, she died as the result of a diffuse, intrinsic brain stem glioma. Sara enjoyed every minute of her life despite the fact that our hearts were breaking, and the insensitivity or (more likely) lack of education on the part of some well-meaning residents and physicians.
First of all, at diagnosis, the neurosurgeon marched into Sara's hospital room, followed by several residents, and bluntly informed us that our daughter had an incurable terminal illness. He appeared totally insensitive about the diagnosis as he shared it in the presence of an audience of residents. With this modeling, and without further education in this area, we are certain these residents will soon be delivering similar news to families in this insensitive manner. When we optimistically stated that perhaps in a few years a cure would be discovered, the doctor said right in front of Sara that she wouldn't be here in a few years. After his statement, he handed her a shiny new quarter, a gesture we'll never fully comprehend.
While his prognosis indeed was correct, we think some tact could have been displayed to help us prepare for this shock. Courses on dealing with families in similar situations should be mandatory for all residents. Future doctors should also be required to watch staged videos of physicians delivering such news in a humane manner with a nurse or social worker also present to provide support to the patient and family members. During the following nine months, we found doctors and residents often discussed worst case scenarios right in front of Sara. This occurred at two hospitals, both major medical institutions. Doctors need to know that patients have a right to enjoy what time they have left with their families.
When dealing with such an emotion-filled topic, doctors need to be sensitive to family and patient needs. With children, Child-Life specialists are instrumental in engaging children in play after exams in order that parents can speak freely to the doctor in a confidential setting. We tried to take control of this situation since no Child-Life specialists were available to us by bringing cousins and friends along as often as possible to doctor appointments. After the exam, we would send Sara to the waiting room to join her companions and play cards, listen to stories, and make puzzles.
Sara was fortunate to have a 7-month period during which the tumor shrunk, and her childhood returned to normal. It was during this time that Sara pleaded with us not to bring her back to the doctors. "How many more times do I have to go?" She would ask," I just want to be a normal girl!" We were fortunate to have the support of family and friends and managed to maintain a high quality of life for Sara. Even after seven months when Sara began to deteriorate neurologically, good advice and monitoring from her oncologist resulted in Sara never spending another night in the hospital. She only spent two days total (at diagnosis) in the hospital the duration of her illness.
We suggest that when residents get their medical degrees, they celebrate at Hallmark. Each new doctor needs to buy several large boxes of sympathy cards. Losing some patients is a given. A card from the doctor, the person entrusted with their beloved family member's care, and instrumental team player, is greatly appreciated. Our impression is that doctors are very uncomfortable talking about or acknowledging the death of a child. Many of them are parents themselves and appear to have great difficulty facing this most tragic of all losses. Doctors need to know, however, that parents are devastated. A simple card from the doctor with a few sensitive words such as, "_______ was a delightful child, I am so sorry for your loss," would be very appreciated. It would convey the message that the doctor cared about the patient, and is very sorry, while providing families with closure to their relationship. We only received one from our hometown pediatrician, and one from the obstetrician who delivered Sara. Aside from the main oncologist who called several times to check on us, the other doctors who participated in Sara's care did not send cards.
Above all, the dignity of the patient must always be considered no matter how sick or disabled the person becomes. There's still a human being with feelings trapped in that body needing support. Sara was cognitively intact until her death, and the Visiting Nurse informed us that hearing is the last sense to be lost. What the patient needs to hear at this time is how loved they are. Their last months, weeks, days, and hours should be filled with as many positives as possible. An incurably ill person will never get that time back, nor will their bereaved families. A wise professor once shared that we are the temporarily able-bodied population. None of us ever envision ourselves or our loved ones disabled or handicapped, but the truth is that accidents, diseases, and other conditions, result in formerly very capable people joining the population of the disabled and handicapped. They are then at the mercy of their caretakers. We never thought this could happen to our beautiful daughter, but it did. This can happen to anyone.
Thank you doctors and residents for the work you do. Please pay close attention to our concerns. Remember, the next time you look at a patient with a serious illness, or severe disability, think of your own mother, father, son or daughter. Then, provide that patient with the quality of care you would want a doctor to provide to for your own family member. Everyone is someone's mother, father, son, or daughter. Each person matters. Your patients are relying on your expertise and sensitivity. You have a very challenging job, but with the necessary tools, you can be successful in meeting this challenge and make a positive difference in the lives of your patients and their families.