Infant and Pediatric Palliative Care: Providing Support for Families

Palliative care has traditionally focused on adult and elderly patients who are facing serious or terminal illnesses. However, there’s also a need for infant and pediatric palliative care. At the University of Minnesota College of Education and Human Development (CEHD), I and others in the field have been working to further our knowledge and build programs to meet the needs of families and children facing health crises.

Palliative care is a holistic approach to caring for patients with serious, life-threatening illnesses and their families. Specially trained teams of healthcare professionals, including doctors, nurses, social workers and others work together to help families handle the challenges and stresses that come with a serious illness. Palliative care is an extra layer of support for those facing life threatening illness.

Unique Emotions, Unique Needs

While the number of infants and children in need of palliative care is relatively small, it’s still significant. Each child and family’s experience can have a wide “ripple effect,” impacting their communities, the lives of neighbors, extended family, work colleagues and others. The challenges and emotions facing families with a seriously or terminally ill child are very different from those faced by adult or elderly patients and their families.

These families face situations in which the possibility of death does not feel “natural.” These are children, not people who have lived out full and healthy lives. As a result, the families and children are experiencing very difficult emotions – in addition to the stresses that occur during any serious health crisis. The family life stage for those caring for ill children is often characterized by many competing demands and less resources with which to meet them.

Children, especially infants, have unique medical needs because they may be facing a childhood illness or congenital condition. The biology and psychology of growing and developing children is different from adults. All these factors have created a need for specialized infant and pediatric palliative care to meet these unique needs. A well-structured program and palliative care team help create a more planned approach to meeting the challenges that the family and patient will face along the way.

Because it’s a relatively new concept, the structure and approach to building infant and palliative care programs have been varied. In the field, we often say, “If you’ve seen one pediatric palliative care team, you’ve seen one.”

That said, we have learned a lot about what makes a successful pediatric palliative care team. Generally, that starts with medical professionals, doctors and nurses who specialize in pediatric care. The medical component is supplemented by specialists in social work, child development and chaplaincy to attend to the patient and families’ emotional and spiritual needs. This is in addition to helping to negotiate advance care planning, insurance, school and other administrative issues that might arise.

The Need for Awareness of and Access to Pediatric Palliative Care

Pediatric palliative care can provide much comfort and support to families, but too often they aren’t aware that it’s available. Health professionals also often have misconceptions about what it is and when to refer. This lack of understanding and awareness means that many families aren’t asking about palliative care programs, and professionals are not referring them for needed care. However, if you were to ask a family, “Would you like services like medical consulting, coordination of care, improved comfort care and support services for your whole family?” the answer would often be “Yes.” – families often don’t know that palliative care is available and provides all these services and more.

Another barrier is the misperception that palliative care is the same as hospice care. While there are many similarities – both seek to provide comprehensive and counseling to families and patients – hospice care is specifically end-of-life treatment. Medicare actually defines hospice care as care for a person expected to die within sixth months.

Palliative care is intended to provide relief from the symptoms and stress of a serious illness, not necessarily a terminal one. The family and patient don’t need to meet the hospice requirement of discontinuing cure oriented treatment to receive palliative care. This means that palliative care can begin earlier and doesn’t put a limit on the child’s potential length of life, something many parents and their health care teams aren’t willing to do. Treatments like chemotherapy can continue while the child and their family receive palliative care.

Since many families live in areas or are served by hospitals that don’t have dedicated palliative care staff, I’m also involved in projects developing palliative care education for primary care providers so they can provide some of these services to their patients as needed.

How You Can Help

It can be difficult to know how to help a family and child experiencing a serious illness. Sometimes, the situation and emotions surrounding it seem overwhelming. However, it’s important that we do our best to support people them at a time when they need it the most. Here are a few tips on how to approach them and how you may be able to help.

Be aware that they are under constant stress. The possibility that their child may lose their life weighs heavily on parents. Also managing complex medical needs in the context of busy family life is challenging. This constant, unending stress can manifest itself in many ways, so be aware of what they are going through and do your best to respond to their cues.

Anticipate the ups and downs. Some days, the child might be experiencing an upswing in their health and the family’s outlook will become more positive. However, this may be followed by another crisis. Be ready for these swings and provide support – and give them space – as necessary. It takes a lot of energy to manage these ups and downs over time.

Offer to help. Since it’s hard to anticipate the family’s mood and needs, ask how you can help. Offer something specific: a play date for siblings, help with rides to kids’ sports events, bringing over a meal or picking up groceries.

Point them to resources. If the family isn’t aware of palliative care services in their hospital, inform them. Let them know help is available. If they have questions, there are several sites online that can provide valuable information like the Courageous Parents Network and Get Palliative Care.

Stacy Remke

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Stacy Remke

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