Treatment Decision Making Guide
Step 8 – Consider Your Values and Goals
Like most decisions in life, our healthcare choices are influenced by our personality, culture, lifestyle, beliefs, and ethics.
Values and goals inform a parent’s complex treatment decisions as much as the medical information, and must be carefully considered.
Ask yourself the following three questions to recognise and honestly assess your values and goals, identify what is most important to you, and establish the ultimate outcome you are aiming for. Discuss them with your support community and your child’s medical team when making your treatment decisions.
- How do you feel about any potential risk to your child’s life, sight, and eye?
- What are your honest values and goals for your child’s treatment?
- Are you leaning towards a particular treatment path before evaluating the options? Can you explain the reason for that?
The best decision you can make for your child will be the one that most aligns with your true values and goals. It is important to understand that this choice may be different from the attractive option.
Answering these questions will help you identify information and/or the support you need to address any fear and anxiety arising from treatment options that most align with your values and goals.
For example, a child has advanced cancer in one eye that is already blind. This reflective process may help the parents recognise that their ultimate goal is to save their child’s life with minimal invasive procedures and potential trauma. They may identify that enucleation most aligns with their goals, and that they have some unaddressed fear and anxiety about the procedure.
This will help them understand they need more information about the surgery and recovery, and the value of talking with other parents whose children had enucleation, and with survivors who live with monocular vision and a prosthetic eye.
Remember that people’s values and interest differ. No one will value your child as much as you do, and most people will not understand the complexities of retinoblastoma or your child’s unique medical situation. So do not allow yourself to feel pressured by others when making treatment decisions.
When you examine all the medical information, and answer these questions honestly, you will know what is right for your child and family. You will be more able to make decisions based on your personal priorities for your child, rather than someone else’s.