As both a parent of a child with a complex medical condition and a hospice nurse, I have experience from both sides of how palliative care, complex care, and hospice care can work on a spectrum for children. Here are some of my reflections.
The Story of Baby C
I first met Baby C when he was eight months old and I was exactly one day into my pediatric ICU orientation. He was born with a severe birth defect. At that point he was a living miracle, a testament to the knowledge and innovation of his doctors, the powerful love of his parents, and his own will to live. For the next four years I took care of Baby C when he came in to the ICU. At one point he was flown across the country and had a one-of-a-kind surgery to try to extend his life and reduce his visits to the hospital.
I saw Baby C again when I accepted a job at a stand-alone pediatric palliative and hospice care unit. He was a palliative care patient at that point, even as he continued to receive life-saving treatments. The palliative care he received improved his quality of life to be the best it could be. Baby C would often come in for respite care.
Baby C had a naturally happy personality, but at around five years old he started to get angry and frustrated. He was getting weaker as he outgrew his body’s ability to compensate. We saw him getting tired and turning more inward. He was not having fun anymore. His parents recognized this, too. Several months later he passed away peacefully at home while on hospice care. I heard he had a very large turnout at his funeral, so many were the lives he had touched in his short six years.
Conventional Medicine and Palliative Care
Negotiating and moving between the different levels of medical care for a child with an expected shortened lifespan and changing needs can be confusing and heart-wrenching, as parents struggle to make the right decisions for their child at any given time. What many don’t realize is that the lines between the three basic levels of care — conventional medicine, palliative care, and hospice care — are not exclusive to each other; a child can move between them as his or her needs change.
Conventional medicine focuses on curing, preserving life, extending life, and maximizing functions and abilities. Many of these life-saving procedures are painful and risky but considered worth it to save the child’s life or ability to function. Examples of this start in the NICU with intubation and tracheostomies, feeding tubes, and corrective surgeries. They may continue throughout life as corrective surgeries on limbs to enable or improve mobility, the ability to eat, breathe more easily, and the ability to communicate. As a child grows or his or her needs change, it may also include the placement of a central port, starting TPN, creating a colostomy, or temporary intubation for serious respiratory illnesses.
Palliative care is the special area of medicine that can make the above treatments and surgeries tolerable. The goal of palliative care is to address and reduce the symptoms of a disease or condition as much as possible. Palliative care is a practice that encompasses a broad spectrum of methods. Palliative care teams serve to coordinate care between specialists so the whole child is seen, not just the one medical issue being addressed at that time.
Pain management is one of the best-known areas of palliative care. A pediatric pain team will tailor a pain plan to the individual needs of a child, whether it is to get the child through a corrective surgery and recovery, or to help him or her cope with chronic pain. Examples of other symptoms a palliative care team may address are anxiety, chronic respiratory symptoms, sleep problems, and behavior problems.
It is important to understand that a child can simultaneously be on palliative care services and other types of services such as conventional medicine or hospice. The palliative care team can serve as the constant support system in a child’s life even as other things may change. A child may remain on palliative care services for years.
I am personally grateful to my child’s palliative care team. When my child had her first of three corrective orthopedic surgeries, it was clear that she didn’t process pain medication in the typical manner, which then triggered severe anxiety attacks. It was a disaster. For her second surgery a year later, a palliative care team was brought in. It made a world of difference and paved the way to a smooth third surgery a year after that.
And then comes the time when palliative care medicine paves the way to hospice care. This is, of course, a difficult decision and must not be rushed. Most parents I work with state they just know in their hearts when “it’s time.” Hospice care is used when the child is expected to have 6 months or less of life. However, since kids don’t always follow standard patterns, it can be revoked and reinstated at any time as the child’s condition may improve or worsen. The palliative care team, who ideally is already familiar with the child’s needs, can work with the hospice team to individualize care.
The main hallmark of hospice care is using only those medications and treatments that provide comfort and do not cause suffering with their side effects. Emphasis is on pain and symptom management to have the greatest quality of life for the time the child has left. Gold standard medications include those that address pain and anxiety. Additional medications and treatments that ensure a child’s comfort may be continued as long as the child may tolerate them, such as seizure medications, IV nutrition, oxygen, BiPap, and tube feedings. If the medications are more for long-term maintenance or have adverse side effects that diminish a child’s comfort or quality of life, they may be discontinued. As a child declines, he or she may no longer be able to handle fluids either through intravenous or tube feeding delivery, as evidenced by signs of fluid overload. A BiPap mask may cause anxiety to the child and be discontinued with medications in place to help the child remain calm and comfortable through transition.
The pediatric hospice team is trained to constantly adjust to a child’s changing needs to ensure comfort in all their moments. They are also trained to emotionally support families and involve them as part of the care team.
Parenting Between Levels of Care
As parents, you are the most important member of your child’s care team at every level of care. You have the final say in your child’s care plan. Having the palliative care team involved in your child’s life provides the constant emphasis on quality of life and pain management as your child moves through his or her medical journey.