The word “palliative” means soothing, calming and pain relieving. Whether used in spinal muscular atrophy (SMA) or in other disease management, palliative care is about comfort. Its goal is to improve quality of life for both the patient and the family.
Palliative care is specialized medical care for people with serious conditions like SMA, focused on providing relief from the symptoms and stress of the disease. Palliative care teams specialize in treating people suffering from the symptoms and stress of serious conditions.
Symptoms can include depression, pain, shortness of breath, fatigue, constipation, nausea, loss of appetite, and difficulty sleeping. The team also spends time communicating with the patients and their families to help them understand their treatment options.
There is no easy way to define the elements of palliative care for children with SMA, but it is often best accomplished with a multi-specialty team approach when possible. Successful teams have a point person who is mindful of the many needs of their patients and can arrange appropriate medical, social, and spiritual assistance as they see appropriate.
There are various gentle non-invasive interventions that can help keep a child with SMA very comfortable, all of which should be discussed with the child’s care team.
According to the consensus statement for the standard of care in SMA, the choice for or against the use interventional supportive care is not simple and should be dynamic. There are, however, some interventions that are better done early so they don’t interfere later.
For example, placing a gastrostomy tube is best done relatively early when associated risks are lower to provide more stable and comfortable nutritional support later when feeding becomes more difficult.
Follow the latest developments for all experimental spinal muscular atrophy treatments on the SMA Therapy Tracker.
SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.