Most traditional primary care physicians have neither the specific training nor the bandwidth to support the diverse specialty medical needs of children with ASXL syndromes. Conversely, clinical specialists focus on only one specific area of care. However, a comprehensive palliative care approach can improve quality of life and care coordination, with some families describing it as an “absolute game changer.”
“The goal is to live as well as possible for as long as possible in the face of serious illness.”
– Heather Brown, MD, Kennedy Krieger Institute
Palliative care is specialized care for people with serious health conditions. The goal is to improve quality of life for both the patient and family, as well as prevent or relieve suffering. This care can help manage the symptoms and stress of conditions that are either chronic, curable, or life-limiting for patients of all ages at any stage of illness. Palliative care support includes:
- Treatment of both physical and psychological symptoms
- Communication and guidance for difficult, often complex treatment decisions
- Close communication and coordination with other medical providers
- Support for the entire family
Myth #1: Palliative care is for people who are at the end of their lives.
Truth: Palliative care integrated early best benefits the patient while disease modifying treatments maximize quality of life.
Myth #2: Palliative care is hospice.
Truth: Palliative care is extra support. Hospice is supportive care without curative intent.
Myth #3: Palliative care is too expensive.
Truth: Palliative care is a medical specialty covered by insurance like other specialties.
When you meet with your palliative care provider, they will spend time getting to know both your child and family. A comprehensive treatment approach is then created to address your goals. Common questions may include:
- What has it been like on this journey with your child?
- How do you define “quality of life” for your child and family?
- What does a good day versus a bad day look like at home?
- When you face challenging times, what helps you get through them?
- What factors do you prioritize in your decisions?
Examples of treatment plan goals:
- Improve mobility and independence
- Maximize comfort and happiness; reduce pain and suffering
- Spend as much time together as a family
- Stay at home, and out of the hospital as much as possible
- Protect the patient from invasive interventions and procedures
Many parents of children with ASXL related syndromes have incorporated palliative care into their child’s treatment. Some of the benefits they have described include:
- Having one point of contact to coordinate care between all medical specialties
- 24/7 support for emergencies and preventing hospital admissions
- Full knowledge of all medications
- Developing a comfort plan for managing chronic pain
- Emotional and practical support
If you would like to learn more about palliative care or find a specialist, there are many organizations that can help you.
- Pediatric Palliative Care Coalition: Provides resources for families of children with life-limiting conditions, and for the medical providers who support them.
- Courageous Parents Network: Empowers parents caring for children with serious medical conditions through resources reflecting the experience of other families.
- Get Palliative Care: Helps families locate palliative care in their area.
This guide was adapted from a presentation at the 2024 ASXL Family Conference by Heather Brown, MD (Kennedy Krieger Institute).
The information presented here is for educational purposes only. This information is not medical advice and should not be treated as such. You should always talk to your or your family member’s health care professionals for diagnosis and treatment, including information regarding which drugs or treatment may be appropriate for you or your family member. We do not represent or warrant that any particular treatment is safe, appropriate or effective for you or your family member. In the event of a medical emergency, you should contact your doctor immediately or call your local emergency service.
