Written by Toni Peters, Pediatric Oncologist, Gundersen Health Systems
How do I interact with my health care provider?
As a physician, the best piece of advice I ever received on how to make a patient and their family feel comfortable during their appointment was to perceive the exam room as the patient’s space. It’s the patient’s appointment and they are the ones who need to accomplish something during that visit, not me. That is how you should approach your appointment time. It is your time and the exam room is your space. Your provider may seem to be in a hurry and it may seem like he or she has many things they want to accomplish at the visit, but the visit should not be over until all your questions are answered and your concerns are addressed.
When you or your child has been diagnosed with cancer, the world seems to stop. A great deal of new information and medical terminology is given to you in the first day or week after the diagnosis. Write things down, or have someone you trust write things down for you. After the visit write down questions that occur to you so you remember to ask the doctor later. You will have a million things on your mind and you will forget what you want to ask by the next time you see the doctor. If you have forgotten something the doctor or another health care provider told you, don’t be afraid to ask again. It is expected that patients with a new diagnosis of cancer will only remember a small percentage of what they are told in the first few days after their diagnosis. Reviewing information multiple times is a very good idea.
Don’t be afraid to ask for a second opinion if it would make you more comfortable. As physicians we are asked about second opinions all the time and only physicians who are not confident in their skills are easily offended by the request. However, if you are comfortable with your physician and the hospital or clinic you are at, second opinions are rarely necessary. For most newly diagnosed cancers the treatments are fairly standardized and the recommendations for treatment are going to be the same or similar no matter where you are treated.
There is nothing more precious than your health or the health of your child. Don’t be afraid to fight for it.
As the parent of a young adult with cancer should I interact with his/her provider?
If your child with cancer is over the age of 18 it presents a whole new set of challenges. Legally your child must make all medical decisions and must sign a release of information form for us to provide you with any medical information. However, in reality young adults just over the age of 18 and in their early 20’s have rarely reached a level of independence where they are capable of dealing with a diagnosis of cancer on their own. Of course the truth is no one is capable of dealing with a diagnosis of cancer on their own, regardless of age.
For most young adults with cancer, the diagnosis comes at a time when they are trying to establish a sense of independence. The diagnosis may require them to live with their parents again shortly after moving out. It may mean financial dependence on their parents again at a time when they had just begun supporting themselves. They see their friends moving on while they are stuck in place. This often places strain on their relationship with their parents at a time when parents want to be extremely supportive. The parental involvement can feel overwhelming and intrusive.
As a physician, I know that all patients in my clinic need to have support. For young adults the best source of support, whether they want to admit it or not, is usually their parents. For interacting with health care providers my best advice to parents would be to not dominate the visits. Allow your adult child to lead the conversation. Only when they have all their questions and concerns addressed should you bring up your concerns. Mention your concerns to your child before the visit so they know you will be bringing it up or they can talk about it themselves.
Ask your child before each visit if they are okay you with being in the room for appropriate parts of the exam and the follow-up discussion or if there are times they wish you to leave the room. If the health care provider asks you to leave the room at times, do not be offended. Our training has taught us that people are more likely to be honest about certain issues if their parents are not in the room. Plus, we are trying to respect your child’s privacy.
If you respect your child’s independence as an adult, your relationship will be much stronger for it.