CHILDREN

(see Talking with Children)

There are many special issues involved in caring for children with advanced diseases. (This book deals primarily with the care of adults.)

Some of these special issues are:

1. Diseases

2. Drug doses

3. Family needs

4. Educational needs

5. Play

6. Concepts of death

7. Hospice care

8. Support services

9. Terminal phase

1. Carers need to be familiar with the range of diseases in children that threaten life. These include congenital anomalies, CNS degenerative disorders, mucopolysaccharidoses, degenerative neuromuscular disorders, cystic fibrosis, liver and heart failures and AIDS, as well as certain malignancies (leukemias, CNS tumors, nephroblastoma, retinoblastoma).

2. Drug doses are calculated according to the weight of the child and carers need to be familiar with correct dose ranges and pediatric prescribing. The percentage of adult dose is approximately 15% at 2 months, 25% at 1 year, 33% at 3 years, 50% at 7 years and 75% at 12 years. Cytotoxic drug doses are based on surface area.

3. The family’s needs are generally similar to those in adult care (practical help, information, explanation and opportunities to express feelings) but there are two special issues:

•  The parents

•  The siblings

The divorce rate is very high after a child dies. Tension arises because of the needs of each parent to grieve (both before and after the death). Unless a couple can “alternate their grief” while supporting their partners, communication problems arise.

Siblings have their own needs which can too often be neglected. Siblings need explanation at every stage, and need to be included. Their grief can be complicated and family counseling can be helpful. (see Family Therapy, Grief, Talking with Families)

4. Sick and dying children continue to have educational needs. Carers must be aware of the importance of continued stimulation and learning. Children’s hospitals often have on premises schools. Children who are terminally ill often feel quite well and need to go on being as normal as possible. Children who are dying should go on learning new things right up to the time they die.

5. Carers must understand how children play. Children develop and communicate through play. Play used to be considered just “release of excess energy” but is now understood as essential to normal emotional development. Children learn new skills, solve problems, adjust to change and develop social relationships through play. Professional carers involved with children have to be familiar with how children play at different ages. A sick child is at a disadvantage in terms of normal play. Children’s hospitals often have a play specialist to catalyze play for ill children. Explanation about illness or procedures has to be through play (involving objects or symbolic language) and preparation through play (with real medical equipment) reduces anxiety. Children’s fears and misconceptions are best understood by observing them at play, and can only be addressed through play. Siblings of terminally ill children also have powerful emotions and adjustment problems. 

Dolls and puppets may be used to symbolize negative feelings in a safe and indirect way. (“She doesn’t love me any more, she’s gone away.”) They can be used to re-enact experiences. Even the way dolls and puppets are handled can convey the child’s feelings.

Drawing and painting can be useful ways of seeing a child’s view of experiences, and allowing the child to express feelings (both through drawing and painting, and through play or conversation that stems from the activity).

Many adults have forgotten how to play. Play is enjoyable, spontaneous, voluntary, involves active participation, has no goal and has a systematic relationship to non-play. (Play is also therapeutic for adults—children teach it free of charge!) (see Talking with Children)

6. Carers need to understand childhood concepts of death. Young children (under 5 years) see death as separation or desertion, and imagine it is somehow reversible (an idea reinforced by cartoon stories). The dead can see, hear and feel. A 4-year old boy driving past a cemetery asked his father what it was. His father explained that people who had died were buried there. After a pause the boy replied “They must be starving!”

Older children (about 5 to 8 years old) search for a cause for death. They may imagine an angel or a dreaded figure taking the person away, or they may believe that something they said or did caused it (“magic thinking”). They begin to understand that death is permanent and begin to realize it will happen to them one day. They usually have some concept of heaven. (“Will there be bicycles in heaven?”) Children’s concepts of death depend on their experience, intelligence and emotional development, and whether their natural curiosity is encouraged and their questions answered. Some 5-year old children have quite a mature concept of death.

7. Hospice care can be helpful. For most children, home is the right place to die. The parents will want to do most of the caring themselves, but at times will need intensive support from the home care team. A few families need the facilities of an in-patient hospice, either to provide respite care for exhausted parents, for the terminal phase, or occasionally for symptom control or the needs of the siblings. One mother said “When at home there was a lot of fear with each crisis, at the hospice that almost dissolved. We were safe, cosseted, loved. There was peace. Beth died in bed between us, in my arms, with our other children safely asleep in the adjoining room.”

“The (in-patient) hospice should feel like going on holiday or staying with friends.” (Mother Frances Dominica)

8. Support services for dying children and their families tend to be poorly coordinated. There can be confusion among the many helping organizations about who is responsible for what. There can be poor communication among hospital staff, pediatric specialists, family doctor and visiting nurses. Medical, nursing and psychosocial professionals sometimes fail to share information together, or with the parents. This erodes the trust of the family. It can help greatly to have one professional act as liaison worker, making appropriate contacts and keeping all team members involved and informed. Parents may wish to keep a “shared care card” listing names and telephone numbers of all professionals and volunteers, and the responsibilities of each.

9. Most dying children prefer to stay at home. Since relatively few family physicians will have cared for a child dying at home, good liaison and communication with pediatricians, palliative care specialists and the hospice team is important.

Parental distress can create strong emotional pressure to contrive and continue inappropriate treatments. The decision to abandon aggressive and unpleasant modes of treatment, and focus instead on symptom control and quality of life, can come too late if a clear decision is avoided. (see Chemotherapy)

Procedures such as repeated venipunctures or injections can be traumatic for children. A central venous line can be established under general anesthesia and can be useful for administering drugs, although tolerance can sometimes develop to IV morphine. A continuous subcutaneous infusion is a very useful alternative. The principles of care are the same as for adults. (see Morphine, Terminal Phase)

The author and publisher have taken precautions to ensure that the information in this book is error-free. However, readers must be guided by their own personal and professional standards of good practice in evaluating and applying recommendations made herein. The contents of this book represent the views and experience of the author, and not necessarily those of the publisher.