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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

Supportive/Palliative Care

What is supportive (palliative) care?

Supportive, or palliative, care is care aimed at comfort versus cure and treatment. The decision to accept palliative care versus aggressive treatment is often a decision parents struggle with. It is an acceptance of a poor prognosis and an opportunity to provide a very special kind of care to a loved one. The dying process requires as much care and respect as the other stages in life. It is only through this care and respect that parents can truly "be there" for their child. It is a change of direction with new goals and new hopes: a peaceful, pain-free death in the presence of loved ones.

Palliative care can be provided in the hospital, at home, or in a setting specializing in palliative care. The duration of palliative care may be long-term, over several years, or short-term, lasting days or weeks. Palliative care may include chemotherapy or radiation for pain control. Often a progressive disease or tumor may be slowed or reduced by this therapy for pain management. Other methods of pain management may be recommended. It is important to discuss that the goal of therapy is not for treatment or cure, but rather to relieve pain and discomfort.

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?

Either in the home, hospital, or a specialized setting, 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

  • Bereavement care

  • Follow-up care for the family after the child has died

The decision to have the child die in the hospital or at home should not be based on the availability of supplies or equipment. All efforts are made to comply with the family and the child's request for care in any setting.

Hospice

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

  • Respite care

  • Bereavement support

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.

Dominic Moore, M.D.

Dr. Dominic Moore received his medical degree from the State University of New York Downstate, completed his Pediatric residency at Phoenix Children´s Hospital, served as Pediatric Chief Resident at Phoenix Children's for one year and completed Palliative Medicine Fellowship at San Diego Hospice/Scripps Mercy.  ... Read More

Specialties:

Pediatric Inpatient Medicine, Pediatric Palliative Care

Locations:

Primary Children's Hospital (801) 662-3645

M. Joan Sheetz, M.D.

Dr. Joan Sheetz is the Medical Director of the Rainbow Kids Pediatric Palliaitve Care Program at Primary Children's Medical Center and an Associate Professor in the In-Patient Medicine division of the Department of Pediatrics. Rainbow Kids Palliative Care team is a multidisciplinary team which works with childr... Read More

Specialties:

Pain Medicine & Palliative Care, Pediatric Inpatient Medicine, Pediatric Palliative Care

Locations:

Primary Children's Hospital (801) 662-3645
Rainbow Kids Palliative Care Program (801) 662-3770

Holly Spraker-Perlman, M.D.

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.
... Read More

Specialties:

Pediatric Hematology & Oncology, Pediatric Palliative Care

Locations:

Primary Children's Hospital (801) 662-4700
Primary Children's Hospital (PCH) 100 N. Mario Capecchi Dr.
Salt Lake City, UT 84113
Map
Appointments
(801) 213-3599