Owen was a young teenage boy with a brain tumor and he came to the hospital as an outpatient toward the end of his life. Candace Linares, Pediatric Massage Therapist, remembers what he said to her on one of her visits, "Massage is the only thing that makes me feel better." He was in and out of the hospital for a total of three years, and during that time was able to tell her what helped him feel better. "I like my feet massaged," Owen said. "Today can you help my shoulder?"

As Owen became increasingly ill and began to enter the dying process, his requests for the massage therapist became less about actual massage techniques and more about to simply "be" with him. Two days before Owen's death, Candace entered his hospital room. At this point, he was unable to speak and in an unresponsive condition. Owen's nurse asked Candace to give him a massage. She began to massage his hand and then stopped. "I felt a very strong sense to stop and wait," she said. "I spoke to Owen and, at that moment, I realized that what would be most helpful was to be completely honest, and I said, ‘Owen I really do not know if you even want massage at this moment.' I instead quieted myself and held his hand." Owen passed three hours after this last visit.

No one wants to think of a child being too ill to play with their friends, or to even venture outside. Our hope is that they will get better and the memories of time in the hospital will be in the past. This is not always the case with children in palliative care. As a child's condition worsens, their palliative health care team begins to discuss options with the family. There are lots of considerations. Does the family want to let the child die naturally? Would they leave the hospital and make their child comfortable at home? More and more, parents are opting to make their child comfortable and enjoy those last precious days of life.

The Difference Between Pediatric Palliative Care and Adult Palliative Care

The causes of childhood illness and death are different than those of adults. So, the care of pediatric patients is also different. Not only are healthcare providers faced with difficult decisions, so are the pediatric patient's parents. They are faced with the reality of choosing between the benefits of using medical technology and improving the child's quality of life.

Palliative care for children aims to improve quality of life for the pediatric patient, as well as for their family. This is done through management of pain and other physical symptoms, as well as emotional and spiritual support. There is growing evidence that the health care system is failing children and families when they are confronted by a life-threatening illness. Children continue to undergo painful procedures and suffer from the symptoms of their diagnosis without ample relief.

In addition to the many traditional pharmacological approaches, there are numerous other pain management strategies and approaches, including complementary and alternative medicine (CAM). CAM is becoming increasingly popular for individuals with chronic or life-limiting illnesses. The term CAM is often used as an umbrella term to encompass many different approaches. This is where it is important to take a closer look at each intervention for its effectiveness. In regards to pain reduction in palliative care, the most utilized CAM therapies include massage, aromatherapy, hypnotherapy and reflexology.

Massage Therapy For Pediatric Pain Relief

Pediatric massage not only provides for pain management without the use of invasive interventions, there are a host of broader benefits for the pediatric client. Massage may aid in the reduction of stress, anxiety and other psychological symptoms, which in turn may improve their quality of life. Cortisol (stress hormone) has shown noted reduction in the use of massage therapy. However, when it comes to children living in palliative care, pain management is of serious concern.

Tragically, each year 50,000 children in palliative care die, with less than 1 percent receiving the care and pain management they need. Every one of these fragile lives deserves to pass free of avoidable pain. Pain is one of the most commonly reported symptoms of children in palliative care. A child's pain may increase along with the stress and fear associated with the life-threatening diagnosis, as well as the discomfort associated with their growing symptoms. Despite the fact that the modern medical system has the means to relieve a child's pain, many children suffer with their discomfort.

Pediatric massage is a gentle, noninvasive therapy which supports the physical and emotional health of pediatric clients, is one of the most commonly utilized CAM techniques, and has been shown to provide many benefits to the pediatric client including a reduction in pain. There are two theories that have been commonly used to help us to explain how massage therapy may be helpful in reducing pain. In the Gate Control Theory of pain, it has been suggested that therapeutic massage blocks pain signals from reaching the brain (i.e. "closes the gate"), which in turn reduces the experience of pain. The Deep Sleep Theory suggests that massage therapy slows substance P (a pain chemical) production and increases production of serotonin. These changes might increase the amount of time an individual spends in deeper sleep and minimizes their pain.

Living in the Moment

When working with children in hospice and palliative care, listening and living in the moment is very important. In some cases, if you have an appointment scheduled, call to confirm in case the young client has passed before you have your first session. This can happen at any time, but is even more common when working with this population. Knowing that the session you share may be the one and only requires focus and living in the moment. Listening can be one of the most important components to working with children using massage. It becomes even more important when there is chaos surrounding the environment. When a therapist enters a room where there is suffering and pain, you must listen. Not only do you need to listen to the words that are said, but also to words left unsaid.

Listen to Your Heart

As much as it is crucial that we listen to our client, their parents and the environment, we must listen to our heart and provide ourselves with self care. We talk about self care for therapists when working with all populations. However, when you are working with children who are terminally ill, self care is critical to provide the best care for not only yourself, but also your young clients.

Self care can take make many forms. From taking a day to relax, meditate and practice yoga, to having a massage yourself and/or speaking to a counselor or therapist. In doing this work, I often advise pediatric massage therapists to keep a confidential journal. A journal where we can relate our experiences, joyful memories and those moments we don't want to forget. Taking the time to write out our thoughts, gives you a chance to express your feelings without having them be so raw and on the surface.

Working with children who are dying brings out many emotions; happy, sad and calming. Knowing the child you have worked with has finally becomes comfortable, falls asleep and passes, is a wonderful benefit that gives the family comfort. Because they now know their little one is finally able to rest in peace.