What Palliative Care Can Do for Your Child
(Even if Your Kid is Not Going to Die for Years)

I hesitated to even include the term “palliative care” in the title of this piece. Once people see that term, they think death. Most parents won’t even bother to read the article, because their children aren’t dying any time soon. What they don’t realize is that palliative care is all about living—not dying—and any child with a life-limiting condition can benefit from receiving it.

Does your child experience daily discomfort, such as pain or vomiting? Are you sick of hospital and ER visits for every cold? Do you need help making decisions about what procedures or interventions you should do or not do? Do you need care coordination? Do you need help with family members, school personnel, or siblings understanding your child’s condition and its impact? Do you need spiritual help or the aide of a social worker? Palliative care can help with all of these things, even if your child has many, many years of living left to do.

Palliative Care Versus Hospice

Most people equate the terms “hospice” and “palliative care” with dying. While hospice is about dying, palliative care is all about living.

By definition, hospice is for people who are in the last stages of life, with most people using the term for people who have six months or less to live. Traditionally, adults on hospice forego curative treatments and most invasive medical procedures and technologies, but do receive medications and medical devices (such as oxygen) to keep them comfortable.

While adults tend to die as expected within six months, children are not as predictable, and their diagnoses are different from those seen in most adults. Children often continue to live for years—and sometimes decades—with conditions that are slowly progressive. In addition, most families continue to try curative treatments and use the support of medical technology for their children until they are very close to dying. With different diagnoses and longer attempts at curative treatment, most children do not fit into the traditional mold of adult hospice services until the last days or weeks of their lives. When children do begin receiving full hospice services, they tend to die quickly, usually within days or weeks at the most.

Many people use the terms “hospice” and “palliative care” synonymously, but they are very different, especially in regards to children. Palliative care is medical care that improves an individual’s life through a variety of mechanisms, including pain control, symptom management, care coordination, and physical, spiritual, and emotional support. Children who receive palliative care typically receive some or all curative care, and continue to rely on medical technology, such as feeding tubes, ventilators, or oxygen. Children may receive palliative care services for years or even decades in some cases.

Palliative care can be thought of as a spectrum of services for any child with a life-limiting condition. At first, when the child is relatively healthy, services may just address symptom management, care coordination, and quality of life. As the child becomes sicker over the years, more services, including care at home, may be provided. As the child nears the end of her natural life, palliative care will begin to include more traditional “hospice” services, including comfort care, withdrawal of support, and advanced directives governing what medical interventions a child will receive.

Most comprehensive pediatric palliative care programs in the United States now prefer to use the term “Palliative Care” for all pediatric patients, instead of using the term hospice at all. This term recognizes that children simply die differently than adults, and that services must be given during all steps of the process, from diagnosis to cure or death.

Healthcare plans, hospitals, doctors, and government programs are just beginning to understand how pediatric palliative care differs from adult care and traditional hospice. Under the Affordable Care Act, for example, all children who are certified to receive hospice care are allowed to continue receiving curative care and medical support throughout their remaining months. But there is a still a lot of education that must be done on the subject, since many doctors and families still believe palliative care is only for children who are actively dying.

It is important to note that pediatric palliative care is not well-funded or reimbursed by most insurance plans or Medicaid, though this may change in the future. Hospital-based physicians are able to bill for their time, but other services, including nursing visits to the home and specialty services, are often not reimbursed at all unless a child is certified as having less than six months to live.

Finding a Palliative Care Program

Not all palliative care programs are created equal. Some are primarily hospice programs that care for children in the last few days or months of their lives. Others are geared almost exclusively to kids with oncology problems, such as cancer. What you need to look for is a program that describes itself as a comprehensive program, from diagnosis to death or cure. In addition, ensure that the program is designed for children or designated as a pediatric program, since children who are medically fragile have much different needs than most adults receiving palliative care services.

In general, there are two types of programs: hospital-based and community-based. Children who are reasonably stable and expected to survive for years or decades are typically served by hospital-based programs. These programs consist of one or more physicians, several nurses, and ancillary staff. They may work with or directly employ other individuals, including a chaplain, social worker, art and music therapists, massage therapists, child life specialists, and other similar individuals.

The emphasis of a hospital-based program tends to be family-centered holistic care of a child with a life-threatening medical condition. The physician and nurses work together to determine plans to treat your child’s pain and other debilitating symptoms. Additional ancillary staff and specialists will assist with meeting spiritual, psychological, and other needs. Most encounters will take place in the hospital or in an outpatient clinic, or by telephone. In some cases, the staff may make home visits, but in other cases, the hospital-based team will work with a community-based palliative care program to provide in-home services.

Children who require more in-home services may be served by a hospital-based program, a community-based program, or a combination of the two. Community-based programs employ nurses to visit children in their homes and provide services in that setting. While overseen by a physician, in many cases theses programs consult with your child’s doctor(s) to obtain prescriptions or orders, which are then carried out at home using a visiting nurse. Community-based programs also offer other services in the home, including art and music therapies, massage, child life services, counseling, chaplain or spiritual care, and social work services.

In Europe, there is a strong tradition of providing hospice or respite homes for children needing palliative care services. Very few of these facilities are available in the United States at this time, but hopefully in the future this will be another option available to help assist families. George Mark Children’s House in California, Ryan House in Arizona, and Dr. Bob’s Place in the Baltimore/Washington area are now open, and several other facilities are in development, including Sarah House in Ohio, Connor’s House in the Philadelphia area, Angel Unaware in Texas, and Children’s Lighthouse in Minnesota.

What Palliative Care Can Do For You

Palliative care programs can provide an amazingly wide range of services. These include the following:

• Pain management, including the treatment of visceral and neuropathic pain
• Symptom management for bothersome symptoms, including but not limited to nausea, vomiting, retching, constipation, dysautonomia, behavioral issues, anxiety, sleep problems, and respiratory problems
• Assistance with making medical decisions, including developing advance directives and/or do not resuscitate orders
• Medical care at home, which may include nursing visits and actual care to keep children out of the hospital, such as the following:
  • Blood draws
  • Catheterization
  • Feeding tube placement
  • Blood transfusions (rarely)
  • IV medications or fluids
  • Arranging for X-rays or other imaging in the home (in some areas)
  • Oxygen and respiratory treatment
  • Administration of pain medication or sedatives
• Complex care management and assistance navigating the medical system
• Care coordination among specialists
• Activities to improve quality of life, such as massage, art therapy, and music therapy
• Child life and other services to assist the child (and siblings) emotionally and behaviorally
• Emotional support for siblings and family members
• Spiritual support from a chaplain
• Social worker services, to assist in identifying resources and programs

If your child has a life-limiting condition and needs assistance with symptom management, medical care at home, or other related services, consider finding a comprehensive pediatric palliative care program. The improvement in your child’s quality of life is well worth the difficulty that you may experience emotionally with the term “palliative care.”