Ethics and Choices

As discussed throughout this guide, every person with SMA is different, as is every family and their circumstances. There are often different options for care and treatment which will be individualised. It is therefore very important that the medical team discuss all aspects of care openly starting from the point of diagnosis onwards. This discussion should explore all the possible options for care and treatment, what could be appropriate and any potential benefits and risks. Discussion should be with you as an adult with SMA, or with you as the parent / carer of a child with SMA and, if age appropriate, with your child. You should feel free to initiate a discussion at any time and to ask questions about any aspects of care. You should know that any decisions can be revisited at any time, especially if there are any changes with the condition. Some of these discussions will be initiated by the clinical team and include quite difficult topics including what would be the appropriate response to any potential life-threatening emergency such as breathing complications.

Though research into the treatment of SMA is ongoing and new treatments may arise that offer significant benefit, it remains a priority for everyone with SMA to maintain a good quality of life and be supported to manage symptoms as effectively as possible.

We hope that this guide has given you helpful information that you can discuss with the medical team.

Always remember that there are neuromuscular centres and teams, and patient support and advocacy groups, as well as your families and friends who are able to support you.