I remember that afternoon very well. During the massage session, my little client started to calm and breathe very evenly as she slowly drifted to sleep.
As always, I ended the session at the time she fell asleep, true to my professional guidelines of only providing massage to children when they can consent—a sleeping child can no longer consent.
When her dad and I realized she was finished with her massage, he tucked her in soundly. We then spent a few minutes chatting before I left their home that day. It was nothing out of the ordinary, a typical massage session, similar to the last few times I had visited them. A few hours later, I received a phone call from my client’s father.
“Thank you for visiting today,” he said. I was happy to have received his call, and glad he saw the benefit in my visits.
The words that came next were surprising.
“We wanted to call you to thank you for our daughter’s massage today, as she passed in her sleep 45 minutes after you left.”
This was not the first time a client of mine had transitioned, but this was the first time a parent called so quickly thereafter to thank me. It is a memory I carry with me; it reminds me how much of an impact providing care for families during their end-of-life moments can truly mean to them.
As much as I can see the positive impact massage therapy may have during these very trying times, working in pediatric palliative and hospice care is not the career path for every massage therapist. If working with this population is something you are considering professionally, there are several ways to learn more and prepare yourself to be a better practitioner.
Understanding Pediatric Palliative Care
The causes of illness and death of children are quite different from those of adults—so, the care of pediatric patients should also be different. Bringing some normalcy to families’ lives is a major goal in pediatric palliative care.
Pediatric palliative care is considered a relatively new medical specialty, available in conjunction with most major children’s hospitals. This type of care includes all measures taken to lessen suffering at every stage of a child’s illness; it aims to improve quality of life for pediatric patients as well as for their families through management of pain and other physical symptoms, along with emotional and spiritual support.
It is important to remember that children and their families may suffer not only physically but also emotionally during all stages of chronic and life-limiting conditions. This pain may come from the symptoms of the child’s condition as well as from side effects caused by curative treatments, plus the stress and anxiety caused by concerns related to the child’s diagnosis.
When a child faces a complex medical diagnosis, the health care providers and the child’s parents face many decisions and often have to confront the reality of choosing between the benefits of using medical treatments and the benefits of simply improving the child’s quality of life.
Palliative Care vs. Hospice Care
The terms palliative care and hospice care are often used interchangeably. However, they are different by definition.
Palliative care is provided to those patients who are considered to have a serious illness and can take place during many different stages of an illness. It is not dependent on the prognosis or whether the condition is considered curable.
Pediatric palliative care is an active, holistic approach to care which focuses on relieving the physical, psychological and spiritual suffering experienced by children and families who face progressive, life-threatening medical conditions. The philosophy of palliative care is to provide optimal comfort and quality of life for the patient, while at the same time sustaining hope and family connection.
Hospice care, however, is an extension of palliative care. For patients to officially receive hospice care, they must have a prognosis of less than six months to live with their diagnosis; in many cases, they are no longer receiving curative treatment for their condition.
Children’s hospice services are dedicated to improving the quality of life of children and young people who are not expected to live to reach adulthood. Pediatric hospice palliative care is planned and delivered collaboratively by an interdisciplinary team. It is a family-centered approach to care that is based on shared decision-making and sensitivity to the family’s cultural and spiritual values, beliefs and practices.
When the end of a child’s life approaches, children’s hospice services are there to provide end-of-life care and bereavement support for as long as it is determined is needed. This allows families to feel supported and gives the child the ability to pass with dignity.
Pediatric Care is Different from Adult Care
Pediatric hospice and palliative care are based on the same values and principles as adult hospice and palliative care. However, pediatric hospice and palliative care also recognize the unique needs of entire families, siblings included, who are facing a child’s illness and possible death.
Children and adolescents are in a process of physical, emotional, cognitive and spiritual development. Depending on their developmental stage, each child may have specific emotional, physical and developmental needs.
In hospice and palliative care for children, the focus is on the entire family, which is defined as those people in the child’s life who provide physical and psychological care for the child, and also spiritual and social comfort. This family network may include family members regardless of genetic relationships. Family members can be those who are biological, marital, adoptive, custodial or who are the child’s family of choice, including beloved friends and pets.
Children and families who face illness, dying and bereavement possess inherent strengths. As part of the process of providing pediatric palliative care, health care professionals explore the family’s expectations, needs, beliefs, fears and strengths.
In a family-centered care approach, children have the right to age-appropriate information about their illness, available treatment options and potential outcomes. While respecting the child’s right to confidentiality, the family and health care providers are informed about the illness, potential treatments and outcomes.
Decisions may be made by the child or the family in collaboration with health care professionals. The health care team ultimately respects the child’s and family’s choices.
Providing health care in a multicultural society presents providers the opportunity to learn about other cultures, while at the same time undertaking providing appropriate care for clients who have very different beliefs, value systems, religions and languages. This is particularly essential when end-of-life care is required during childhood. In both palliative and hospice care, the family’s cultural and spiritual beliefs are respected.
Families may vary in their religious and cultural belief systems, patterns of coping, previous experience with loss, death, sadness and other emotions associated with grief and loss. All of these beliefs can influence their child’s understanding of transition and death.
Navigating the unique cultural and spiritual needs of your clients can be difficult. You always run the risk of accidentally offending the family by not knowing about an important cultural practice. Everyday activities we often take for granted, such as eye contact, touch, decision-making, compliments, health beliefs and practices, personal space, modesty and privacy, and non-verbal communication often can differ dramatically between cultures.
It is a big challenge for health care professionals to be aware of and practice cultural sensitivity at all times, due to lack of understanding about all cultures, beliefs and age-old practices. If you are ever in doubt, it is always best to respectfully ask the family the best way to provide care. A good resource can be other members of the health care team, as well as the family themselves.
Massage Therapy for Pediatric Palliative Care
As a massage therapist providing therapeutic care to children who are medically fragile or are in palliative or hospice care, a massage therapy session can take on a very different purpose compared to treating a typically developing child.
Often the therapist should adjust tactile techniques to be much lighter in pressure and more slowly paced; in many situations the majority of touch the child has received recently has been uninvited poking and prodding, painful clinical touch or lack of positive touch. The most gentle of compassionate touch can be best during these times.
Therapists should also consider teaching the family simple techniques they can use to become an active member of the child’s health care team and feel empowered to bring comfort and ease pain for their child.
How Children Experience Pain
When children are living with a life-threatening illness, they often undergo painful procedures and experience numerous types of pain as symptoms of their diagnosis. Each year, tragically, children in palliative care die without receiving the pain management they need.
Pain is one of the most commonly reported symptoms of children in palliative care. A child’s pain may also increase due to the stress and fear associated with the life-threatening diagnosis.
Despite the fact that the modern medical system has the means to relieve a child’s pain, many children suffer with their discomfort. In addition to the many traditional pharmacological approaches, there are numerous other pain management strategies, including integrative medicine therapies and non-pharmacological options for pain management.
Pediatric massage may offer pain management without the use of invasive interventions, but massage also can have a host of broader benefits for the child. Massage may aid in the reduction of stress, anxiety, fear and other psychological symptoms, which in turn may improve quality of life.
As a noninvasive therapy which supports physical and emotional health, pediatric massage is one of the most commonly utilized integrative therapies to provide benefits to the child.
Your Touch Makes a Difference
Pediatric palliative care strives to provide comfort and support to young patients and their families, and massage therapists typically focus on making the transition from life to death more comfortable.
The prepared pediatric massage therapist will be respectful, culturally sensitive, compassionate and able to collaborate with a comprehensive interdisciplinary team to provide the very best care for clients.
About the Author:
Tina Allen, LMT, CPMMT, CPMT, CIMT, is the founder and director of the Liddle Kidz Foundation and an authority on infant and pediatric massage therapy. She has written for MASSAGE Magazine on many topics, including “Why Pediatric Massage Requires A Unique Approach” and “Massage Benefits Autistic Children for a Lifetime.”