Symptom Management
Communicating with Health Care Professionals
Establishing a good working relationship with the health care professionals who are involved in your child's care is essential if you are to manage your child's illness effectively. Being able to talk frankly with your child's doctor about the medical issues that arise will ultimately lead to better care for your child, as well as help you to feel more in control. So to begin with, you will want to choose a doctor with whom you feel comfortable.
“One of the first things I did after Kathy was diagnosed was to find a new pediatrician, someone I felt I could talk to and who would be there to help us through. I actually called and interviewed several before I made my choice. I was very straightforward about my needs and expectations. Not only did I find a good doctor, the experience was a very empowering one for me. I felt I had taken control in what up until then had seemed a totally out-of control situation.”
Establishing A Good Working Relationship
Establishing A Good Working Relationship
What does a good working relationship mean? It means, for example, that you feel free to ask your doctor for the information you need in terms that you can understand. It means, as well, that you feel free to tell your doctor what you know about your child. In reality, you are the expert on your child; no one knows more about your child than you. In fact, many
of these progressive neurological diseases are so rare that your doctor may not have seen or treated a case before. Ultimately, the best care becomes a collaborative effort between the family and the medical professionals.
In the course of caring for your child, you may well be learning to perform procedures that are new to you. Make sure that you understand the instructions you are being given regarding your child's care. If you are unsure, don't hesitate to ask the health care provider to explain or demonstrate again. Some parents find it quite helpful to take along a tape recorder during doctor's visits so that they can refer to the taped instructions later on.
“Very little information was given to me at the time of the initial diagnosis. In fact, the information that was available was so involved that I had to use a medical dictionary to understand its contents.”
“When we received the initial diagnosis we were too stunned to ask the right questions or even remember exactly what was said. We called later that evening and asked to have another conference, this time bringing a tape recorder. We felt that we could relax a bit and really listen better since we weren't so intent on memorizing every word. This technique worked so well for us that we got in the habit of taking a recorder along on most doctor's visits.”
One area of extreme importance in maintaining an effective working relationship between you and your health care provider is ensuring that you are involved in the decision-making process regarding your child's care. Many medical problems can be handled very differently, depending on your feelings and those of the health care professionals with whom you are working. It will empower you to be an active participant in the decisions that are being made and may well help you later on with the reassurance that you did the very best you could do for your child.
“I had a very serious problem at one point. The doctor had ordered, without my knowledge or consent, to withhold food from my son. It seems that Jimmy had thrush, which had been overlooked. The doctor thought that Jimmy had lost his ability to swallow and ‘thought it best just to let him go.' I demanded the doctor return to the hospital to rescind that order. I was outraged that such a decision was made without my consent.”
One problem area that can arise between parents and health care professionals relates to the terminal nature of these diseases. Most doctors and other medical workers are used to aggressively treating any medical problems that occur.
For many parents, however, the major focus is not to prolong life but to make their child's days as comfortable as possible. Sometimes it is hard for health care professionals to “switch gears” and take an approach more focused on comfort than cure. Open and ongoing communication about this issue is important.
“Sara had gotten to the point where she had a lot of mucus in her throat most of the time. One of her nurses kept aggressively suctioning her to the point where she would bleed, moan, and try her best to turn away. Despite my protests, the nurse continued, explaining that she needed to suction like that to prevent more serious illnesses. It wasn't until I finally asked Sara's doctor to write it in her records that this nurse was comfortable with suctioning Sara less frequently, and more gently.”
Keep in mind that the doctors and other health professionals you are working with are there to help you care for your child. If you feel that you are spending too much time fighting, or that you do not have the control over your child's care that you want, perhaps it is time to search for other medical personnel. Having caring physicians and other health care professionals “in your corner” can make a world of difference.
“If you ever need to talk to your doctor, stand between him and the door. If he tries to walk around you, change doctors.”