November is National Hospice & Palliative Care Month: What It Means for DTDS Families
Each November, the country recognizes National Hospice & Palliative Care Month — a time to spotlight the importance of comfort care, symptom management, and holistic support for people living with serious illness and for their caregivers.
For families affected by Dopamine Transporter Deficiency Syndrome (DTDS), thinking about hospice or palliative care can feel overwhelming. The concept is often associated exclusively with end-of-life care — but in fact, palliative care can (and should) play an active role much earlier, supporting quality of life even when curative treatments are ongoing.
What Are Palliative Care and Hospice Care — and How Are They Different?
Palliative care is specialized medical care focused on alleviating symptoms, pain, and stress of serious illness. It respects patients’ goals and values and can be provided alongside curative or life-prolonging treatments.
Hospice care is a specific form of palliative care reserved for when treatment is no longer curative and a patient’s life expectancy is estimated to be limited (often six months or less). At that point, the focus shifts to comfort rather than cure.
Importantly: Not all palliative care becomes hospice care — they share goals of relief and dignity, but hospice is a more specialized phase.
This distinction is essential for DTDS families. While most children with DTDS will not access hospice care early on, palliative approaches (pain control, managing dystonia, optimizing comfort, supports for caregivers) can be integrated well before end-of-life decisions.
Why This Matters for DTDS Families
Children with DTDS often contend with complex symptoms — muscle tightness or spasticity, dystonia, issues with feeding, respiratory challenges, and pain.
A palliative care team can help coordinate care across specialties, manage symptoms more proactively, and ensure that medical decisions align with the child’s and family’s goals.
In pediatric palliative care, services are explicitly designed for children with serious illnesses — these services can begin at diagnosis, run concurrently with ongoing therapies, and evolve as the child’s needs change.
For many families, palliative support means less crisis-driven care, more planning, better comfort, and emotional support for both the child and caregivers.
How to Find Palliative or Hospice Resources in Your Area
Here are some trusted resources where families can search for palliative or hospice services, get information, or connect with support programs:
CaringInfo — provides a directory to find hospice, palliative care, and bereavement service providers near you.
National Coalition for Hospice & Palliative Care — its Resource Center offers guidance, tools, and policy info on serious illness care.
GetPalliativeCare.org — great for understanding what palliative care is, where to find it, and clearing myths.
Hospice Foundation of America — offers education, articles, and tools for families navigating hospice or palliative care.
NHPCO (National Hospice & Palliative Care Organization) — has pediatric palliative and hospice care resources, including “concurrent care” options for kids under Medicaid programs.
Hospice & Community Care — their caregiver resource page has helpful guides and links.
If your child’s medical team does not currently include palliative specialists, you can ask:
“Is a referral to pediatric palliative care appropriate for my child?”
Even if hospice is not yet relevant, engaging palliative care can ease symptom burden, reduce hospitalizations, and offer support and planning for families.
Here are some resources to help you decide if palliative care is right for your family.
the conversation project - Your Conversation Starter Guide For Caregivers of a Child with Serious Illness
get palliative care - Handout for Patients and Families
How You Can Get Involved & Share Awareness
Share this post during November to help more families understand that palliative care is not only for the end of life — it’s about support, relief, and quality of life.
Ask your clinicians, therapists, or hospital whether palliative services are an option. Sometimes they are underutilized because of misconceptions.
Use your voice in advocacy: Many palliative care and hospice programs are under-resourced. Supporting policies or nonprofits in your area can expand access.
On this National Hospice & Palliative Care Month, we honor the families and medical teams who bring dignity, compassion, and hope to every stage of illness. For DTDS families, palliative care is not a surrender — it’s an essential layer of support that walks with you, not just at the end.