It can sometimes be terrifying for parents when a pediatrician suggests a consultation with the palliative care team. If parents believe the term "palliative care" to be a synonym for "end-of-life care," they may hesitate to welcome a consultation.
In fact, pediatric palliative care, also known as pediatric advanced care (PAC), is not limited to end-of-life care. PAC teams offer a host of support services to families of children at any phase of a chronic or life-limiting condition. Sometimes, children may get well and families no longer need the service. But just how beneficial palliative care can be is not always appreciated.
Getting a Referral
If parents want to meet with a palliative care team, they should ask their primary pediatrician for a referral. They may also ask hospital administrators if palliative care is available.
Many times, palliative care programs are not easily visible in the hospital, so families need to ask if they exist. Even primary pediatricians may not always think of the PAC team right away. Families may need to be proactive.
Accepting palliative care is not an indication that doctors have given up on treatment or finding a cure. Palliative care services are often administered to children along with curative treatments, not instead of them. The services provide families and patients with the support and comfort they need to get through intensive treatments and hospital stays.
Doctors often recommend a consultation with the PAC team at the initial diagnosis of a chronic or life-limiting condition. The PAC team can best meet a family's needs if it is brought in early and can work with the family throughout the course of the illness.
If palliative care services are not recommended at diagnosis, a doctor may recommend them, or parents can request them, if one of the following occurs:
- A first treatment is unsuccessful
- Symptoms worsen or prior symptoms recur
- Parents are being asked to make increasingly difficult decisions
- Parents feel they need additional support
Finding Palliative Care
Pediatric palliative care is a relatively new specialty available in major children's hospitals and academic hospitals as well as in most medium-sized children's hospitals. However, not all hospitals offer it.
Families can search for pediatric palliative care programs under "Care Delivery Programs" in the National Association of Children's Hospitals' online directory.
If pediatric palliative care is not available at your child's hospital, primary caregivers can perform some palliative tasks. Families may ask their primary doctor if it is possible to be referred to an outside facility for palliative care services.
Pediatric Medical Home
The "medical home" may be a viable alternative in the absence of outpatient palliative care.
Medical home is not a residence nor is it in-home care. It is a concept that could be described as a home base for all of a child's medical needs.
Like PAC teams, medical home is a coordinated approach to care that facilitates communication among all caregivers and family members and helps ensure continuity of care. Medical home goes beyond making referrals to specialists; it connects families with all types of resources that address and ease the burden of special medical needs.
More information on medical home is available online at the National Center for Medical Home Implementation.