Rainbow Kids at Primary Children’s Hospital is a consultation service available for any child who is experiencing a life-threatening illness. The program is here to help both the child and family deal with feelings, symptoms, and concerns during a time that may be frightening, confusing and overwhelming. Our team works with you to develop goals of care for your child given their medical condition, and those goals then help to shape your child’s treatment plan. Rainbow Kids’ mission is to help children with life-threatening illness and their families find comfort, support, and hope.
The Rainbow Kids interdisciplinary team includes social work, chaplaincy, child life specialists, music therapists, nurses, nurse practitioners and physicians. Team members have the specialized training, experience, compassion, and understanding to work with you and your physicians to support you and help you find the path that is best for your child and your family.
When your child is facing life-threatening illness, you may feel your life has been turned upside down. You may need special help with...
- Communication... Our team can help you and your child communicate with your health care team, family members, and your child’s siblings. We can assist in gathering and understanding the medical information you need to make the best decisions for your child and family.
- Spirituality... Our team is available to help your child and family explore the meaning of what is happening as you face the challenges of serious illness. We can also assist your family in connecting with your faith group, at your request.
- Emotions... Our team offers a safe setting to talk about some difficult thoughts and feelings your child and family may experience.
- Physical symptoms... Our team can help your health care team minimize pain and other uncomfortable physical symptoms, especially toward the end of life.
- Social connections... Our team can help you find ways to stay connected with your child’s school, neighbors, faith community, and friends.
As parents of a child with a life-threatening illness, you walk one of life’s most difficult paths. Your family does not have to find the way alone. The palliative care consultation service — Rainbow Kids — is here to offer comfort, advice, and support to your family each step of the way, wherever the path may lead.
This program is available to children and their families regardless of insurance status or ability to pay.
You can reach us Monday through Friday at (801) 662-3770
What is palliative care?
Palliative care is care that makes patients as comfortable as possible and that prevents and relieves suffering. And, although it is part of end-of-life care, it can be applied to care for people in any stage of disease. Palliative care allows for medical therapies, but focuses on:
Improving quality of life
Reaching the best possible function (for example, daily activities, physical activity, self care)
Helping with decision-making about end-of-life care
Providing emotional support to patients and their families
Walk with your health care provider or local hospital about whether or not palliative care is available in your area. Check with your health plan to see whether this type of care is covered.
What are the patient's rights?
Patient's rights are a list of rights to ensure that the quality of care, respect, and decision-making processes will be honored by the company, individual, or institution that is providing his or her care. These rights will be given to the patient and family before care begins. It is similar to a contract that provides protection for the patient and family, and informs them of services and limitations of the caregiver(s).
What are palliative care services?
The services most palliative care providers can offer are extensive. The following are some of the services offered:
Psychosocial support and intervention to help the patient and family members
Equipment for delivery of medications, nutrition, oxygen, and suction
Equipment including special beds, toilets, chairs, wheelchairs, and bath requirements
Skilled nursing care, doctors, pharmacists, and other specialists
Medication and nutrition support
Spiritual, religious, and cultural needs and requests
Special services for siblings or children (for example, support groups)
Respite care allowing the family to rest
What is hospice care?
Hospice is a type of palliative care that provides services to improve the quality of life for the family and child. The word "hospice" literally means "a place of shelter." Hospice settings and home-hospice care provide extensive services to terminally ill children. Care usually involves relieving symptoms and providing psychological and social support for the patient and family. To qualify for hospice care, a patient usually has a life expectancy of less than 6 months. The decision to pursue hospice care is a decision not to pursue aggressive treatment. In addition, hospice philosophy provides for the spiritual and cultural needs of the child and family. The goal of hospice care is to provide the terminally ill patient peace, comfort, and dignity.
Research has shown that hospice care at home helps a family as a whole. In addition to being in the comfort of the home, family members can also take an active role in providing supplemental, supportive care to the patient. Hospice often includes an extensive multidisciplinary team available for care, including doctors, nurses, social workers, chaplains, home care aides, trained volunteers, pharmacists, and bereavement counselors.
Settings for hospice care
Although most patients receive hospice care at home, hospice care can also take place in other settings, including:
Hospital-based hospice. Most hospitals have a hospice program to give terminally ill patients access to support services and other health care professionals. Some hospitals even have a special hospice unit.
Long-term care hospice. Many long-term care homes have hospice units with specially trained staff for those patients who require medical services not suitable for a home setting.
Freestanding hospice. Independently owned hospices may sometimes include an inpatient care facility, in addition to their home care hospice services. The inpatient facilities offer patients hospice services if the patient requires medical services not suitable for a home setting.
What services does hospice care provide?
Hospice services are similar to home health care services, but may also include:
Spiritual services and religious needs
24-hour care or on-call care
A Child's Concept of Death
Every child, at any age, has his or her own unique concept of death. Past experiences with death for the terminally ill child, as well as, his or her age, emotional development, and surroundings are what most influence a child's own concept of death. Cartoons, movies, television, video games, and even books are filled with images of death. The child with a terminal condition may have previously experienced death by loss of a family member, friend, or pet.
An adult's misconceptions and fear about death are often transferred to his or her children. Treating death as a part of life is difficult, but may help alleviate some of the fear and confusion associated with it. Dealing with death must be done within the cultural beliefs and mores of the family.
Developmental age is a broad term used to describe the maturity of thought process development. Children may be more or less mature in their thinking and processing information, than others, at a similar age. The following are children's concepts of death, according to common developmental ages:
Infant. For an infant, death has no real concept. Infants do, however, react to separation from parent(s), painful procedures, and any alteration in their routine. An infant that is terminally ill will require as much care, physically and emotionally, to maintain a comfortable environment as any age group. Maintaining a consistent routine is important for the infant and his or her caregivers. Because infants cannot verbally communicate their needs, fear is often expressed by crying.
Toddler. For the toddler, death has very little meaning. He or she may receive the most anxiety from the emotions of those around him or her. When a toddler's parents and loved ones are sad, depressed, scared, or angry, he or she senses these emotions and become upset or afraid. The terms "death" or "forever" or "permanent" may not have real value to children of this age group. Even with previous experiences with death, the child may not understand the relationship between life and death. Death is not a permanent condition.
Preschool. Preschool-aged children may begin to understand that death is something feared by adults. This age group may view death as temporary or reversible, as in cartoons. Death is often explained to this age group as "went to heaven." Most children in this age group do not understand that death is permanent, that everyone and every living thing will eventually die, and that dead things do not eat, sleep, or breathe. Death should not be explained as "sleep."
Their experience with death is influenced by those around them. They may ask questions about "why?" and "how?" death occurs. The preschool child may feel that his or her thoughts or actions have caused the death and/or sadness of those around. The preschool child may have feelings of guilt and shame.
When children in this age group become seriously ill, they may believe it is punishment for something they did or thought about. They do not understand how their parents could not have protected them from this illness.
This idea may make preschool-age siblings of a dying child feel as if they are the cause of the illness and death. Young siblings of dying children need reassurance and comforting during this time period, as well.
School-age. School-aged children are developing a more realistic understanding of death. Although death may be personified as an angel, skeleton, or ghost, this age group is beginning to understand death as permanent, universal, and inevitable. They may be very curious about the physical process of death and what happens after a person dies. They may fear their own death because of uncertainty of what happens to them after they die. Fear of the unknown, loss of control, and separation from family and friends can be the school-aged child's main sources of anxiety and fear related to death.
Adolescent. As with people of all ages, past experiences and emotional development greatly influence an adolescent's concept of death. Most adolescents understand the concept that death is permanent, universal, and inevitable. They may or may not have had past experiences with death of a family member, friend, or pet.
Adolescents, similar to adults, may want to have their religious or cultural rituals observed.
Most adolescents are beginning to establish their identity, independence, and relationship to peer groups. A predominant theme in adolescence is feelings of immortality or being exempt from death. Their realization of their own death threatens all of these objectives. Denial and defiant attitudes may suddenly change the personality of a teenager facing death. Adolescents may feel as if they no longer belong or fit in with their peers. In addition, they may feel as if they are unable to communicate with their parents.
Another important concept among adolescents is self-image. A terminal illness and/or the effects of treatment may cause many physical changes that they must endure. Adolescents may feel alone in their struggle, and scared, and angry.
It is important for parents to realize that children of all ages respond to death in unique ways. Children need support and, in particular, someone who will listen to their thoughts, and provide reassurance to alleviate their fears.
Dr. Joan Sheetz is the Medical Director of the Rainbow Kids Pediatric Palliative Care Program at Primary Children's Hospital and Professor of Pediatrics at the University of Utah. Rainbow Kids Palliative Care team is an interdisciplinary team which works with children with life-threatening illnesses and their families, assisting with communication... Read More
Dr. Holly Spraker received her medical degree from Medical College of Virginia. She then completed her pediatric residency from Emory University and a dual fellowship in Pediatric Hematology/Oncology and Hospice and Palliative Care from Saint Jude Children’s Research Hospital, Tennessee. Dr. Spraker is currently appointed as an Assistant Professo... Read More