Q: What should you do if you need a second opinion about a treatment plan or concern about your child? How should you go about it?
A: This is an important set of questions. I want to start by making some points that form the basis for my responses to your questions about second opinions.
Parents are the decision-makers for children with a new heart.
The first point to open this discussion is that parents should be fully involved with the care, and care decisions, of their child who has had a heart transplant. Just like parents should be involved in their child’s education, they should be involved in their child’s health care decisions. The keyword here is that you are a decision-maker for your child. That begins with your decision about whether to begin on the transplant pathway.
Parents are members of their child’s team caring for their new heart.
The second point is that from the transplant team’s perspective, you are a ‘member’, not an observer. Expect this and embrace this and ask a lot of questions. With your involvement, there is a higher likelihood of your child living to reach all their dreams. Just like other members of your child’s transplant team, you will need to commit to going to ‘transplant care school’, starting with the basics. You should then advance to become skilled at independent learning starting with how you/your care team communicates. You will then progress to be able to ask questions and have enough knowledge to learn and understand the “why’s” and alternatives to the various challenges that pop up now and then in your child’s life. I cannot stress enough how important it is for the family to be an active and communicating member of the team.
Care decisions are seldom black and white in caring for your child with a new heart.
Many care decisions are difficult to make. Remember you are a member of a team, so you need to be able to understand why certain decisions for your child are difficult. Only you can factor in how any care decision might affect your family.
How to know when to get a second opinion?
Caution: Second opinions are not designed to handle medical emergencies or provide immediate treatment guidance.
Rule #1: With any care decision, you as a parent should understand what is planned, why and what are the risks and benefits to your child. Ask all your questions to your other team members, doctors, and coordinators. Do not be embarrassed to ask your team questions. Most of the time that is enough.
Remember, a new management decision has consequences and you most certainly will have questions and concerns- maybe even fears. While all of these reactions are normal, it doesn’t mean you need to accept everything you hear at face value. The next step should be to ask questions. In the Pediatric Heart Transplant World, we are all Medical Students on our first day of class trying to figure everything out. Which is why Enduring Hearts is dedicated to supporting more research for children who have had a heart transplant.
Rule #2: Practice smart research methods and use reliable sources.
How to get a second opinion?
Rule #3: Depending on your comfort level with a care recommendation, don’t be afraid to trust your judgment.
If you feel like you need more reassurance, then you should ASK YOUR DOCTOR. Ask if he/she knows someone they would recommend for a second opinion. You will likely be continuing care with your child’s current team, so you need to be transparent. You should not hesitate to get a second opinion for fear of offending your physician, you are seeking help to decide about your child’s care situation. In fact, most physicians encourage second and even third opinions, especially when it involves a major care decision.
See also, Heart-To-Heart Talk to Your Doctor.
The Smart Researcher: A Guide to Online Medical Education (AHA)
The Internet can be very helpful, but you must know how to sort reliable science from junk. Tip #1: Know your site when reading a medical site. There should be an “About Us” tag that tells you who maintains the site and why. If this section is missing, or if the site seems focused on selling something, look elsewhere or proceed with skepticism.
Who can you trust? Tip #2 Use Reliable Sources.
The most reliable sources include accredited medical schools, university teaching hospitals and reputable nonprofit organizations such as the American Heart Association. These websites (which end in .edu and .org) provide health information and libraries. Government sources such as the National Institute of Health, the Center for Disease Control and Prevention and the Department of Health and Human Services are also reliable. The National Library of Medicine has created a 16-minute online tutorial that teaches you how to evaluate information on the web, find the tutorial here.