Making a decision about treatment for a child with a heart condition

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Learn about some of the issues involved in making a decision about treatment for your child with a heart condition.

Key points

  • The final decision about your child's treatment is up to you and you are entitled to seek a second opinion from another expert.
  • Seeking a second opinion may prolong the time until your child gets treatment.
  • Diagnoses are a matter of judgment and doctors can disagree on how best to treat certain conditions.
  • Bioethics consultants at the hospital can help parents with ethical or moral concerns about their child's treatment.

This page highlights some important factors to consider when making decisions about your child's treatment for a heart condition.

How do you make a decision about treatment?

Your child's doctor will discuss treatment options for your child with you. The doctor will outline the good, and sometimes bad, things associated with each approach. They will suggest the treatment that, in their opinion, is most appropriate for your child. This recommendation will be based on years of experience in dealing with children with this heart condition. You have the right to full information about every possible option, even if they are experimental.

Write down the information as the doctor discusses it with you. It may be quite complicated. Having it written down means you can reflect on it later, when you are better able to absorb the information.

It also helps to learn as much about the treatment as possible. Do research about it at the library, gather brochures and books from support organizations, search this and other reputable Web sites, and talk to people whose children have experienced something similar. Many people find that knowing more helps them cope with what is happening.

The final decision about treatment is up to you. If you don’t understand the options, ask as many questions as it takes. If you cannot get in touch with the cardiologist to ask follow-up questions, speak to the clinic nurse.

In most cases, there will be time to think this over and make a decision. In some cases, a quick decision will be needed. Keep in mind that you have the right to refuse treatment and you have the right to a second opinion. Some people are comfortable with the doctor's recommendation, while others want to hear another expert opinion. When you agree to the treatment, you will need to give your consent by filling out a consent form.

What if you want a second opinion?

If you are not certain about a doctor's diagnosis and recommended course of treatment, you are entitled to seek a second opinion from another expert. Some doctors are open to the idea and even encourage it, since it never hurts to have another opinion. However other doctors feel slighted at having their judgment questioned. If you frame your request within the context of wanting more information to be fully informed, that should help. Regardless of your doctor's response, the choice to seek a second opinion is yours.

For minor problems, a second opinion may not be that helpful, but for more complicated conditions, or if you are not comfortable with the doctor, it may be a good route to take. It is important to consider, however, that seeking a second opinion may prolong the time until your child gets treatment, which can affect their health and long-term outlook. And while a second opinion might help you make a more informed decision, it could also make your decision-making process more complicated.

At a lot of hospitals, doctors have regular conferences with each other where they are able to present difficult cases and ask for other opinions on diagnosis and/or treatment. So in many instances your child may already be benefiting from the combined input of a number of experts.

It is also important to be aware that diagnoses are really a matter of judgment. There is no right or wrong. And even if doctors agree on a diagnosis, they may have a difference of opinion when it comes to how to treat the condition.

If you want to seek a second opinion, your cardiologist can arrange for you to talk to another doctor. If you are not comfortable talking to your cardiologist, your family physician or paediatrician can make a referral to another cardiologist.

What if you want your child to have treatment somewhere else?

You are entitled to have your child treated at another facility. Treatment approaches and availability can vary from hospital to hospital. It is important to weigh the risks and benefits of going elsewhere. Think about why you want your child to go to another hospital. The key consideration should be getting the best and most timely care possible for your child. Your child's cardiologist should be able to provide some guidance.

What about the cost of going to another hospital?

It is important to make sure that your health insurance will cover the cost of treatment; sometimes costs are only covered if your current hospital does not provide the care your child needs and you must go elsewhere. It may not be covered if you simply prefer to go elsewhere. If you want to go out-of-country for your child's care, you will need to pay for the treatment yourself, along with any travel and accommodation expenses that are involved. Medicare does not cover this kind of out-of-country treatment.

What if you are having trouble making a difficult decision?

If you find it extremely difficult to weigh the options and make a decision, after you've had a detailed discussion with the doctor and perhaps secured a second opinion, consider contacting a bioethics consultant at the hospital. This is someone who is trained to help patients and parents who have concerns about ethical or moral issues having to do with their child's care. If you are having trouble communicating with the health care team, consider speaking to a patient representative.

Last updated: December 11th 2009