Longer Term Health

Conversations Matter

We know that many people with CHD want to talk to their doctors about their long term health plans and advance care planning. Advance care planning just means planning ahead of time in case a person becomes really ill and unable to speak for themselves. They can let other people know ahead of time what is important to them.

We actually think that it makes sense for EVERYONE, whether or not they have CHD, to take time to think about (and write down) their future wishes for their health care. Here are 5 helpful steps:

Step 1) Think about your values and wishes

• What are your values, wishes and goals for your health care? What is most important to you?
• Do you have personal beliefs that influence your health care wishes? For example, some people say that their religion or spirituality is very important to them.
• Are there any kinds of medical treatments that you think you might not want?
• If you had a choice, where would you want to be cared for if you were really sick? Home or a hospital?
• In the past, has there been times when you (or a family member or friend) had to make medical decisions in a hurry and it might have been helpful to plan ahead of time if possible?

Step 2) Learn about your own health

• We can never predict exactly what life will bring. Your clinic team can talk to you generally about what other patients with your type of CHD have experienced.

Step 3) Choose someone to make decisions and speak on your behalf

• A Substitute Decision Maker is the person that you formally name to make decisions on your behalf if you are unable to speak for yourself. For many teens or young adults, that will be a parent. But adults can also choose who they want their Substitute Decision Maker to be. It’s just really important that the person knows they are your Substitute Decision Maker and is okay with that responsibility!

Step 4) Communicate your wishes and values about your future health care

• Talk about your health care preferences with your Substitute Decision Maker, close family members or friends, and your health care team.

Step 5) Document your wishes

• After you’d had time to think about what is most important to you, write it down and make sure that your health care team has a copy!
• Different American states and Canadian provinces can have different ways in which people should document their wishes. These are sometimes called advance directives or advance care planning documents. Talk to your medical team to learn the best way for you to keep a record of what kind of care you want in the future.

Want to learn more?

Some websites that tackle this information look like they are geared for much older people, but really have good information for people of all ages.

Click here for information about advance care planning and advance directives from the Adult Congenital Heart Association.

In the US, long term health information is available here

In Canada, you can check out advance care planning resources by clicking here.