Little People Fighting Big Battles

Sometimes referred to as “comfort care,” palliative care is a specialized approach to treating people with serious or life-limiting illnesses. Palliative care focuses on improving quality of life for patients and their families—not only in a physical sense but also in mind and spirit. The goal of palliative treatments is to relieve pain and other symptoms that take away from a person enjoying life, such as loss of appetite, shortness of breath, nausea, anxiety, depression and more.

Palliative care is often confused with hospice care. Some people mistakenly think that patients undergoing palliative care must stop curative treatment, and that accepting palliative care is “giving up.” However, palliative care is a complement to curative care—an extra layer of support that gives patients and their families strength to carry on with everyday life.

Palliative care is offered more frequently to and accepted by sick adults than sick children. For many parents, it’s hard to accept their child’s life limiting condition and ask for or accept this type of support. This support can be just as, if not more, beneficial for kids than adults.

Adult vs. Pediatric Palliative Care

There are a number of significant differences between adult and pediatric palliative care. The types of complex illnesses seen in children are often different than those seen in adults. Similar illnesses seen in adults and children present themselves differently in children due to their age, development, and anatomy. In addition, some families have multiple children affected with the same condition at different levels of severity.

Children are often more resilient than adults, which may affect the progression of their condition. Children are also constantly growing and developing as they live with their illness, which means their emotional and physical reactions to their condition may change dramatically over time. All of these factors influence the ever-changing pediatric palliative care plan and how the palliative care team administers it.

A pediatric palliative care team comprises a variety of individuals, including the child, family, teachers and numerous health care professionals, such as nurses, chaplains, bereavement counselors, social workers and primary care physicians. Family-centered pediatric palliative care can include a variety of services, such as play therapy, child-life therapy, physical therapy, spiritual counseling, nutritional therapy, bereavement counseling and more. It can be helpful in a variety of settings, from hospital to home to school.

The Earlier the Better

Starting palliative care early—ideally at the diagnosis of a life-threatening or life-limiting condition—is crucial to optimal care for the child and family. Any child who has a high chance of passing prior to a normal lifespan can benefit from palliative care, even if they may not need it immediately.

Unfortunately, this palliative support is rarely initiated early on in a child’s illness. This may be due to lack of knowledge by family and/or care team of what palliative care is and its benefits for children.

Physicians and family members who consider palliative care only after exhausting all curative options risk missing out on palliative care when it is needed most. Children with life-limiting conditions with palliative care plans in place seem to fare much better in both disease management and overall quality of life than those without.

Palliative care consists of a multidisciplinary team approach based on respect and empathy. These specialists work collaboratively with care teams to provide services, which allow the child to be more comfortable; they reduce family stress and promote a trusting relationship.

These relationships ensure that families facing difficult decisions have a team they trust and feel comfortable consulting. When a family is in crisis or facing end-of-life decisions is not the time to bring in a new team of people.

Palliative Care and the Grieving Process

Often, parents and families begin grieving as soon as a child is diagnosed with a life-threatening or life-limiting condition. A palliative care team supports them through this process.

Some children with life-limiting conditions face end-of-life situations multiple times throughout their life. For example, a child with Duchenne’s Muscular Dystrophy may be hospitalized with a life-threatening infection, in which the family begins to prepare for the worst; the child recovers and is discharged home. This is probably one of multiple occurrences in this child’s life. If palliative care is in place, the family and child will have continuous support throughout the ups and downs of this child’s life.

What Homecare Providers Can Do

Homecare providers play an important role in initiating palliative care for the children they serve. Homecare providers must not only know the resources in their community but also understand the families served. Palliative care can be a sensitive subject, so homecare providers must get to know the family and introduce the issue using an individualized approach.

We recommend starting with small, nonjudgmental comments such as, “I notice your child looks to be in pain.” Then ask what you can do to help. Homecare nurses should be constantly assessing and observing what the family may not notice about their child’s emotional and physical state.

Working With Children

With pediatric palliative care, parents typically make medical decisions. But this doesn’t mean children can’t take an active role in their care.

Palliative care providers should offer children a developmentally appropriate explanation of the child’s condition. Most often, children—and their siblings—are aware that their condition is terminal. There are a number of special considerations when talking to a child about their illness and prognosis, including the child’s age, development, religion, culture, family dynamics, disease progression, child and parents’ wishes and more. Ultimately, care teams should approach this subject on an individual basis with close communication and consultation with the family.

Little People. Big Battles.

Children with life-threatening or life-limiting illnesses are little people fighting big battles. They—and their families—deserve the support to make their lives a bit easier. Early initiation of palliative care is key to helping children with a serious illness maintain a comfortable quality of life, grow, develop and journey through childhood.