Pediatric Supportive Palliative Care

Pediatric supportive palliative care (PSPC) is specialized medical and psychosocial care for children and families living with serious illness focusing on quality of life.

PSPC uses a team to help patients and families through difficult illnesses that may include doctors, nurses, social workers, chaplains, child life specialists and others. PSPC teams do not focus on one part of the body or one type of illness; they are experts in the management of complex medical and social situations.

Pediatric supportive palliative care teams can:

  • Develop a supportive relationship with patients and families
  • Address uncomfortable symptoms related to serious illness
  • Help patients and families understand what to expect with their illness and discuss options for care
  • Help navigate system issues in the care of ill children or, in some instances, end of life care

PSPC services are available in a variety of settings including hospitals, clinics, or the home.

Is pediatric supportive palliative care right for your family?

Children living with a serious illness often experience physical and emotional distress related to their disease. Worry and stress are also common among their parents, siblings, and other family members. If your child has a genetic disorder, neurologic disorder, cancer, heart or lung condition, or another serious illness, supportive palliative care may reduce distress and enhance quality of life for them and for your entire family.

When is the right time?

It’s never too early to start supportive palliative care. In fact, PSPC is most effective when an ongoing, long-standing relationship is developed between the child, family, and team. Your child can receive PSPC services while continuing other treatments and therapies.

What is perinatal supportive palliative care?

Perinatal supportive palliative care is for families expecting a baby with a serious or life limiting illness. In some instances, the baby may not be expected to survive delivery or live long after birth. Sometimes pediatric supportive palliative care teams provide this care, but some institutions may also have a separate perinatal supportive palliative care team.

Perinatal supportive palliative care teams meet with a family throughout pregnancy to provide information and support, discuss their goals of care, and to create a family-focused delivery and care plan.

Pediatric supportive palliative care services

PSPC helps with communication:

  • Clear explanation of your child’s illness and treatment care options
  • Enhanced communication and coordination with all of your child’s medical teams
  • Counseling about what to expect in the hospital, clinic and at home when caring for your child
  • Relationship-building with your child and family and identifying what is important to you
  • Guidance throughout your child’s illness, support for complex medical decisions and help with future care plans

PSPC helps with comfort and bonding:

  • Easing your child’s pain and other symptoms associated with their illness by considering medications as well as non-medicine options to help them feel as good as possible
  • Providing emotional validation for lived experiences
  • Offering spiritual care services for your child and family
  • Psychosocial screening and support for your child and family including siblings (ex. mental health, bereavement, financial, housing, schooling)
  • Facilitating and celebrating normal family and life moments such as birthdays, holidays and milestones

PSPC helps with coordination:

  • Following your child in and out of the hospital to ensure smooth inpatient to outpatient transitions
  • Ongoing closed-loop communication with all care teams
  • Assisting with community resource connections

Does receiving supportive palliative care mean “giving up?”

No. Many children receive PSPC services for support of their life-long, chronic illnesses and other children may only need PSPC for a brief time.

Blending supportive palliative care with curative treatment is the most common use of PSPC and may be an option for you and your family.

Is this hospice?

No. Both hospice and supportive palliative care focus on quality of life for patients and families through pain and symptom management and psychosocial support, however, there are key differences:

  • Hospice care focuses on the final months of life while supportive palliative care is available at any time during a serious illness
  • Most hospice care is provided in the home while supportive palliative care can take place in the hospital, clinic, or at home
  • Some hospice programs require that patients are no longer receiving treatments to cure their illness, but supportive palliative care be provided alongside other disease-directed therapies

While some patients enroll in hospice services as their disease progresses, many patients receiving PSPC services never need to transition to hospice services.

What is concurrent hospice care?

As a result of the Patient Protection and Affordable Care Act of 2010 (PDF) children who are receiving hospice cannot be denied simultaneous curative treatments. Medicaid, CHIP, and some private and commercial insurances support the concurrent care benefit. To learn more about concurrent care for children, visit the following website:

Difficult conversations, advance care planning, and advance directives

Although difficult, talking with your child and family about what to expect, their hopes, fears, and goals is important and can help your child and family feel a sense of peace, preparedness, and unity.

The Conversation Project's Pediatric Starter Kit (PDF) is a guide for parents talking to their child about illness and end-of-life.

Other free conversation guides that may be helpful are:

Advance care planning is the process of incorporating your child’s and family’s goals into a healthcare plan. Your trusted healthcare providers or your PSPC team may be helpful with this process. Some PSPC teams use materials such as Voicing My Choices and Five Wishes to help guide this planning process.

Advance directives are documents that convey these wishes and goals and are mostly for patients 18 years of age and older. For more information on these resources, see the HHSC Palliative Care website.

Coping for families

When families have a loved one diagnosed with a serious illness, it can be overwhelming. Although everyone responds differently, it is common to feel anger, sadness, or worry. Establishing routine and communicating are two ways to help families cope. For children, it is important to acknowledge feelings, establish routines, have one-on-one time, and utilize a support network. These resources may be helpful:

Talk to your family’s doctors or mental health professionals if you feel like you need more support.

Grief and bereavement support

At some point your child, you, or your family may need grief and bereavement support. There is no right or wrong way to navigate the grief journey, although it is important to acknowledge feelings. These resources may be helpful:

Talk to your family’s doctors or mental health professionals if you feel like you need more support.

Additional resources

How to find PSPC services near you

Talk to your pediatrician or medical team about connecting you to pediatric supportive palliative care resources near you.

Check the Provider Directory at Get Palliative Care website.