After an SMA diagnosis, parents are asked to make many difficult decisions about their child’s care.
These decisions are especially urgent for parents of children with SMA type I, who face many physical challenges, including muscle weakness and trouble breathing, coughing, and swallowing. Type I is often fatal early on in life.
As with any complex disease, every family’s experience is different. We support families in deciding what care options are best for their individual situations. And no matter what options your family chooses, palliative care can be an appropriate part of your child’s care plan. Palliative care will assist you in making decisions that are best for you and your child, and are consistent with your personal values and beliefs.
Palliative Care Basics
Palliative means relieving or soothing symptoms without curing the underlying disease. Palliative care is an interdisciplinary approach, involving clinicians from different areas, such as medicine, nursing, social work, child life, spiritual care, and various types of therapies. Palliative care strives to provide comfort for you and your child, and to uphold quality of life: physically, psychologically, socially, emotionally, and spiritually.
Though palliative care is usually associated with end-of-life decisions, it is broader than that. It should be introduced at the time of diagnosis, to help the child live with the best quality of life possible throughout the illness, and to avoid making hasty decisions during a time of crisis or acute illness.
Palliative care is NOT "doing nothing." Palliative care is:
- Making choices consistent with your beliefs and values, using your head and your heart, and sometimes changing your mind.
- Using an interdisciplinary approach to provide your child and your family with the best possible care that meets your goals.
- Experiencing the best quality of life, however you define it, from a physical, psychological, social, emotional, and spiritual perspective.
- Adopting a care strategy that you can use in addition to treatment, not instead of it.
- Receiving the support, information and guidance you need to do what is best for you and your child.
Palliative Care Considerations
Before you make a choice regarding palliative care, we suggest considering some of the following issues. This is not so much a checklist as a guide to help you arrive at the best decision for your child and your family.
- Are you comfortable with your child’s doctor and the options they have given you for your child’s care? If needed, find a clinician who has experience with SMA and who you are comfortable with.
- Have you investigated all your options? Talk to other parents, doctors, or clinicians. They can share their experiences, or point you to resources they have found helpful.
- Have you gathered all the information you need? Browse this website, or contact a member of our family support team, or a leader of your local Cure SMA chapter. All Cure SMA representatives pledge to offer non-judgmental support, without pressuring you to choose one way or another.
- Have both parents agreed on your choices before your child's situation becomes critical? Do you have a friend or family member who can help you think through your decisions? Often, an interdisciplinary palliative care team will include a counselor, social worker, and a spiritual advisor or chaplain. Support is available to help you make the decision that is best for you, your child, and your family.
Remember: You are not alone in this situation, but the decisions you make are entirely yours.