Treatment Decision Making Guide
Parents face many decisions about their child’s medical care for retinoblastoma. This comprehensive guide to making treatment decisions will help you navigate the process, from before diagnosis, and throughout your child’s eye cancer journey.
Making decisions about your child’s retinoblastoma treatment can be complex, highly emotive, and stressful. You may be reeling from news of the diagnosis or relapse, and very anxious about your child’s wellbeing.
You will likely be given a lot of detailed information in a very short space of time, and you will need to make major decisions about your child’s care quickly.
Treatment decisions may include:
- Identifying the best treatment facility and retinoblastoma team.
- Choosing between two or more treatments.
- When cancer is advanced and/or the eye is blind, deciding whether to remove your child’s eye (enucleation) to protect their life and wellbeing.
- When cure is unlikely, deciding whether to begin or continue intensive treatments, or prioritise quality time, comfort and wellbeing.
The decisions you make will influence everything from overall wellbeing of your child and family to the quality and cost of care, and the potential for cure. Taking time to make the best possible decision is vital.
Parents who make treatment decisions jointly with their medical team are more satisfied with the medical experience and outcome, and less likely to feel regret.
Research shows that:
- 92% of parents wanted to know how their child’s cancer and its treatment may impact their future life, even when that information was very distressing.
- Parents who found information upsetting were more likely to consider it important, and to want detailed understanding of their child’s risks.
- 1 in 6 parents regretted their treatment decisions. But parents were less likely to regret their choices when they felt they were given high-quality information about the diagnosis, treatment and long-term implications, when they trusted the oncologist completely, and when they held their preferred role in decision making.
- 64% of parents wanted to share decision making with the oncologist.
- Oncologists failed to recognize a parent’s preferences 51% of the time.
- 1 in 3 parents had a level of decision making that differed from what theywanted 14% were more involved than they wanted, and 20% were less involved than they wanted.
- The 14% of parents who had a more active role than they wanted were more likely to regret their treatment decisions.
Parents must consider a range of factors to make confident treatment decisions, and reduce the risk of decisional regret. These include:
- Your thoughts and feelings.
- Your decision making process.
- Knowledge and understanding of retinoblastoma.
- Detailed evaluation of benefits, risks, and side effects for all treatment options.
- Awareness of how your child can be supported to cope with each option.
- Knowledge and understanding of how your child’s future may be affected.
- The emotional, practical, and financial cost of each option.
- Personal preferences, beliefs, values, and goals.
- Disagreements and conflict.
We recommend you do all you can to actively engage with your child’s medical team through every decision. Addressing all considerations can help you make the best treatment decisions to protect and save your child’s life, preserve their wellbeing, and possibly save eye and sight – if safe to do so.
This comprehensive guide will help you:
- Identify, gather, and evaluate all the information you need.
- Navigate conversations with your medical team, family and friends.
- Make confident decisions that support your child’s complete wellbeing throughout treatment and beyond.