Q&A: family matters

What to do when at-risk family members are reluctant about getting screened by a cardiologist.

Question: My children know I have a genetic heart disease but they still haven’t seen a cardiologist. Do you have any suggestions about how I can get them to see a doctor?

 Answer: from associate genetic counsellor Laura Yeates

Most inherited heart diseases are passed on in such a way that first-degree relatives (siblings, parents, children) have a one in two chance (50%) of also having the disease. Many people with a genetic heart disease can also be symptom-free but still be at risk from rare, life-threatening complications so clinical screening is critical. But what do you do when family members refuse to go?

As the genetic counsellor at the Sydney Heart Centre at RPA Hospital, I’ve heard many different responses to why people don’t want to be checked (“He says he feels healthy”, “She doesn’t want to know”, “They’re busy now but they said they will get around to it”).

This can be a very difficult and sensitive matter when you’re worried about your children, siblings or even parents. Here’s what I recommend:

Just what the doctor ordered: Give them unbiased but credible information on your condition. There are information sheets available on our website. If your condition hasn’t been published on our site yet, email us and we’ll work towards adding one shortly or recommending a reliable site. You can also ask your doctor to provide you with a letter highlighting the risks and recommendations for family members.

Leave information with contact numbers around the house. You’d be surprised how many times an information sheet gets read just when someone is sitting down to have a cup of coffee. Make sure the contact numbers and/or website are included so they can call and ask a question.

Use your regular check-ups as a reminder. Make a simple statement like “I was at the cardiologist the other day. He/she asked after the family and if you’d been checked”. Try not to push too much but answer questions if they show interest.

Don’t hassle them too much. As the saying goes, you can lead a horse to water but you can’t make it drink. If you’ve informed them of the risks and the recommendations, it’s ultimately up to the individual whether they get checked. Remind them every so often but respect their decision. As time goes on, you may find that as their circumstances change (e.g. they have children) so does their attitude to seeing a cardiologist.

Got a suggestion? If you have any other ideas we’d love to hear them. Please post a comment or email us with your story or any helpful suggestions.