For both children and adults, palliative care is a type of medical care that is specialized for people who are living with a serious, life-altering or life-limiting illness. Adult palliative care is synonymous with end-of-life care, whereas pediatric palliative care can be administered at any stage of life, even if the child’s life expectancy is long. Pediatric palliative care is a holistic, interdisciplinary approach aimed at addressing the complex issues related to a child’s chronic, life-limiting illness and how that illness affects not only the child, but the entire family. Providers help families make important decisions about their child’s care, aiming to enhance the child’s quality of life while honoring the values of the child and family.

Tip for Parents and Caregivers:  To become more familiar with pediatric palliative care, Click HERE to review the NHPCO 2023 Facts and Figures resource.

If your child has been diagnosed with a serious illness that might diminish his or her quality of life, palliative care can help. Examples of illnesses can include, but is not limited to, genetic disorders, cancer, neurological disorders, heart or lung conditions, etc. Palliative care can begin as soon as the child receives a diagnosis, and it can be administered simultaneously with your child’s regular, ongoing medical treatment. At any stage of illness, palliative care can help relieve and even prevent symptoms such as physical pain, as well as emotional distress.

The National Institute of Nursing Research (NINR) recommends asking your child’s health care provider about palliative care if your child suffers from pain or other symptoms due to serious illness, or experiences physical pain or emotional distress that is not under control. The NINR also recommends asking about palliative care if you need help understanding your child’s health condition or need support coordinating your child’s care.

When your child begins palliative care, they may experience an improvement in their quality of life. Palliative care may provide your child with relief from symptoms such as pain, fatigue, nausea, loss of appetite and difficulty sleeping, and many others that may be specific to your child’s condition. Your child’s ability to carry on with daily life, undergo medical treatments and meet their goals may improve over the course of receiving palliative care. In addition, you should experience thorough and frequent communication with your child’s care providers, who should allow you to actively engage in your child’s care.

Palliative care has significant benefits for the child who is ill as well as for their family members and loved ones. First and foremost, it can relieve the child’s physical, mental and emotional pain and discomfort, thereby allowing them to experience a higher quality of life even while living with a life-limiting illness. Palliative care also helps families cope with many challenges connected to their child’s illness, such as confusion about medical treatment options, uncertainty about how to best support their child and emotional distress about their child’s life expectancy. Through thorough and frequent communication, individualized care plans and expertise across multiple disciplines, palliative care teams empower families to help manage these challenges so that they and their children can live life to the fullest.

The first step is to ask your child’s health care provider(s) if palliative care is right and available for your child. After having a discussion and determining that it is time to begin palliative care, your child’s health care provider will provide a referral for palliative care services. Based on your child’s unique needs, palliative care may then take place within the hospital setting where your child receives treatment, through outpatient services or even at home.

Tip for Parents and Caregivers: Click HERE to access the PPCC Caring Conversations Toolkit

Yes, your child can receive palliative care alongside curative care or life-prolonging care. After diagnosis, palliative care can happen at any time during a child’s illness. Palliative care does not depend on a child’s prognosis (a patient’s outcome).

Usually, a child can continue to see their primary pediatrician in addition to seeing medical specialists and palliative care providers. Palliative care providers administer additional, specialty care in conjunction with a child’s ongoing medical care, and therefore will typically work in partnership with the providers you and your child know best.

You can ask for palliative care as soon as your child is diagnosed with a serious illness, or at any stage of your child’s medical journey. It is a common misconception that pediatric palliative care is synonymous with end-of-life care, but in actuality, it can be administered at all stages of life, even when life expectancy is long.

Children can receive palliative care almost anywhere they receive their ongoing medical care. Such locations can include hospitals, outpatient clinics and even the child’s home. To determine the environment best suited to your child’s needs, speak with your child’s doctors, nurses or other care providers.

Your family will likely have to make many decisions while your child is receiving palliative care. These could be related to your child’s comfort, treatment options, health goals, and possibly, the difficult decision of when to begin end-of-life care. Fortunately, palliative care is administered by a team of professionals spanning multiple disciplines. Their diverse expertise — related to medical health, behavioral health, child development, pastoral care and many other disciplines — can aid you in any decision you may need to make. Do not hesitate to ask members of your palliative care team for assistance when you feel overwhelmed, confused or incapable of making a difficult choice on behalf of your child. They will help guide you.

Tip for Parents and Caregivers: Click HERE to view the PPC Webinar, Decision Making in Pediatric Palliative Care, presented by Dr. Scott Maurer.

Perinatal palliative care is most often provided to parents who have learned from their obstetric providers that their unborn child is facing a life-limiting — or possibly life-threatening — illness. Receiving such a diagnosis can be very difficult, frightening and distressing for parents, and a perinatal palliative care team aims to provide comfort and support during this challenging time. This type of care can begin as soon as a child is diagnosed (oftentimes before they are born), and it can continue through the child’s birth, providing the newborn with as much comfort and closeness with their parents or caregivers as possible. After the child is born, care can continue simultaneously with life-prolonging treatment, and through to end-of-life if a cure cannot be found.