Palliative care is an important part of treatment for spinal muscular atrophy (SMA). This refers to therapies that focus on comfort more than treating the cause of disease. Palliative care usually begins at the time of SMA diagnosis and continues throughout life.
Palliative treatments are usually given alongside other SMA treatments. Discussions about palliative care are often hardest when treatments no longer maintain quality of life. There is no consensus about what type of care to give in these situations. Your doctor can discuss all healthcare options, but these difficult decisions are up to the parents and family.
What is palliative care?
Palliative care refers to healthcare that soothes, relieves pain, and reduces stress. It focuses more on comfort than on curing or treating the condition. The goal is to improve the quality of life.1
Palliative care is often wrongly associated with “end-of-life” care. In fact, palliative care is given at any age or illness severity. It is not an alternative to other treatments. Palliative care should be given along with other treatments for many chronic conditions.1
Doctors, nurses, and other specialists provide palliative care. It can be given in hospitals, nursing homes, clinics, or at home. Medicare, Medicaid, and other insurance policies may cover palliative care.1
When do people with SMA need palliative care?
Palliative care is used at different times for every person with SMA. It usually starts when a child is diagnosed with SMA and continues throughout life. Improving quality of life is a main focus of physical therapy, breathing support, and other SMA therapies.2,3
Discussions about palliative care are difficult when treatments are not working and may be prolonging suffering. For example, when non-invasive ventilation is not enough to support breathing, invasive breathing support may not maintain quality of life.2
There is no correct or best decision for every child and family. Some families want to extend their child’s life as long as possible with aggressive care. Others want to minimize illness and ensure comfort through palliative care. Families can also choose a combination of these approaches.4
Talk to your doctor ahead of time about all options. Tell them your priorities and values. They can discuss all options based on quality of life and prognosis. Creating a plan for when to transition to palliative care can help make decisions quickly in a crisis. These plans can change in the future, but it is helpful to be prepared for all outcomes.4
What are some examples of palliative care in SMA?
Palliative care is different for every person with SMA. It is best accomplished by a care team with experts who are mindful of each person’s unique needs. The most common symptoms of SMA addressed with palliative care include:3
- Shortness of breath
Many palliative treatments can maintain comfort for people with SMA and their families. These include:1,4
Palliative care is changing because of new disease-modifying treatments. For example, children treated with SpinrazaⓇ (nusinersen) receive different forms of palliative care. Standard practices may change as expected disease outcomes change.3