The consensus statement (2007) describes palliative care for SMA children as more complex, when compared with other life limiting conditions. Opinions may differ considerably between families and clinicians, be influenced by personal values, or conflicting goals about perceptions of quality versus quantity of life. Opinion differs about whether one should prolong life or whether the priority is relief of suffering.
There are different ideas about what practices work, and of the role of and of the role of the palliative care team. Many people believe that the role of the palliative care is about hastening death, but it is really about how to live as well and as comfortable as possible, until that time comes. It is to be expected that all children with SMA type 1 and some with SMA type 2 won’t survive childhood, however palliative care not be seen as the end resort.
Early planning and early intervention, including the use of artificial feeding or respiratory support may just be stages along this journey. Good clinicians will aim to so whatever the family needs, for as long as possible to prolong a comfortable and happy life for the child and their family. Many palliative care relationships are long lasting, even extending into months and years for some cases.
These palliative care teams are a great resource for your family. They will assist and guide you through this non familiar and often confusing process. Remember they are here to help you on your SMA journey and only have your best interests at heart.
At times there will be some tough decisions to be made, but at the end of the day you as a parent or a person with SMA, have to choose what is right for your situation so that you don’t feel guilty at the end of the day.