Chapter-12
When a Child is Dying
Your children are not your children.
They are the sons and daughters of
Life’s longing for itself.
They come through you but not from you,
and though they are with you,
yet they belong not to you.
– Kahlil Gibran in “The Prophet”
In 2012, 6-6 million children under-five died worldwide (UNICEF). The leading causes of deaths were: pneumonia, premature birth, complications during birth, diarrhea and malaria. In developed countries, the leading causes of death under five are premature birth, congenital diseases and birth defects. Older children die from illnesses, injuries and suicides.
In poorer countries childrens’ deaths are common. They die in large number from preventable diseases like – pneumonia, measles, diarrhea and malaria. Co-existing malnutrition contributes to their deaths.
The loss of any young life is tragic, a disruption of natural order of things. Parents are supposed to die first, not children. The effects on families after a child’s death are often tragic. The death of a child alters the life and health of others immediately and for the rest of their lives. Parents never “get over” the loss of a child, but rather learn to adjust. Still, the death of a child remains one of the most stressful life events imaginable.
One-fourth to one-third of parents who lose a child report that their marriage suffers strains that sometimes proves irreparable. More than a third of surviving siblings develop adjustment problems at home and at school. And the parents face a higher than normal risk of an earlier death from both natural and unnatural causes.
Children Need Comfort Care
A child is not simply a small adult. Children and their families have needs that differ from those adults who are facing the end of life. Currently, for fewer percentages of children receive comfort care as compared to adults. American Academy of Pediatrics guidelines for caring for children with life-threatening and terminals illness says: “the goal should be to add life to the child’s years not simply years to the child’s life.
Despite the improved survival rates among children with cancer, congenital heart disease, and the effects of premature birth, the death of a child always cannot be averted. Recognition that death is inevitable often lags behind the reality of the medical condition, leading to inappropriate aggressive treatments. In other words, parents and doctors often don’t know when to stop tormenting the dying child. Studies have shown that parental recognition that a child will not survive lags well behind that of the child’s doctors, although there are doctors, too, who never want to stop treatment.
Sometimes, it is up to parents to stand back, face the reality of the situation, assess how much suffering a child can and should withstand, and say to the child’s doctor. “Wait a minute. What are we doing here? Have we lost sight of the big picture? Is there likely to be a good out come at the end of all this?” Sometimes it is up to parents to recognize that “doing everything” is not doing anyone any good, and especially not their child. Sometimes it is up to the parents to say, “Enough already. We can’t stand to see how much pain and suffering our child is going through. Let’s make our child comfortable. Give us time together to share the rest of our child’s life as best we can.” (Brody)
Many times the dying children know better than their parents and doctors. They make the decision to give up what to them is a futile battle for survival. They become tired of being sick, being poked, subjected to another round of therapy (especially cancer patients), and getting sick over and over again.
Parents are responsible for all medical decisions involving children under eighteen. While such children may tell their parents just what they do and do not want in the way of treatments, these requests are not legally binding. If the child is a minor, the parents, word prevails even if it is counter to what the child wants or does not want. But when such disagreements arise, parents might be wise to step back and ask themselves if perhaps the child’s choice is the correct one.
Problems also arise when parents request continued therapy that their child’s doctors consider futile, such as continued respiratory support (respirator) for a child who has been diagnosed as brain dead. It is important that doctors and parents decide together keeping in mind “what is best” for the child, not what is best for the parents or the hospital or the insurance company.
Caring for a dying child is very stressful on the entire family-parents and siblings. Most parents need what is called “respite care” – a chance to remove themselves briefly from the emotionally and physically draining situation. Family members and friends – should be available to stay with the child for brief periods so that parents can get away to recharge their batteries. Parents also often need family members and friends to step in and help with ordinary household tasks-cooking, cleaning, taking care of the other children.
What Parents Want from Doctors
A study published in 2006 from children’s Hospital Boston and the Harvard Medical School (Pediatrics, March,2006) identified following priorities of parents whose children were under doing end of life care treatments in the hospital:
- Keep us informed
First and foremost, parents said that they want honest and complete information: “Answer all questions. Give all information – we can handle it. If something is wrong tell us.”
- Access to staff
Parents want ready access to the hospital staff. Parents felt hospital staff members were too often in a hurry and reluctant to meet with them. The inability to stay in contact with the attending physicians or nurses caring for their children resulted in considerable stress for parents.
- Co-ordinate care and communicate
When there were too many doctors with differing opinions, parents often developed a nagging, anxiety of “not knowing what is going on”. Some parents preferred to have a single physician to serve as the spoke person for the medical team and to coordinate all cares.
- Compassion and support
Parents need to know that those caring for their child are really caring and “not just doing their jobs.” Parents greatly appreciated it when hospital staff were honest, did not provide false hope and listened to the parents and shared their grief.
Parents also want the opportunity to be physically close and to care for their child, especially during the final days and hours of the child’s life. They do not want to be rushed or intruded upon during these special moments – the time in which they “say good-bye” to their child – before and after the child has died.” (Brody)
Needs of a Dying Child
Adults know that death is a permanent affair, at least with regard to life on earth. But young children do not necessarily share that understanding. Depending on the age and maturity of the child, the concept of death has different meanings, and sometime no meaning at all.
Age 0 to 2
Infants and toddlers possess no concept of death. Their needs at the end of life are for love, attention from familiar persons, maximum physical comfort, consistency, and having their favorite toys.
Age 2 to 6
At this stage, magical thinking comes into play. Young children regard death as temporary and reversible, like sleep. They may believe that death is a punishment for bad behavior. Child psychologists suggest the use of precise language – using the words death and dying – when speaking to children under six. Give the example of death of a pet or known animal. Avoid euphemism like gone to sleep or gone to be with god.
Age 6 to 12
Older children develop an adult concept of death as permanent and irreversible. They need to be told the truth. Most children see through lies and euphemism. If children request detailed information about their disease or prognosis (outlook of the disease), it should be given. They should be allowed to participate in decisions about their care. They need to be reassured that no matter what happens, they will not be abandoned or forgotten and will always be loved. They need to maintain contact with their friends and siblings for as long as they are able.
Teenagers
Adolescents are ready to explore the spiritual meaning of death and examine the meaning of life. Terminally ill teenagers should be allowed to participate in treatment decisions. They should have ready access to their friends. They should be encouraged and allowed to express strong feelings – even rant and rave against the unfairness of it all. Truthfulness is critical – they always know when you are lying.
At any age, children who are dying should be allowed to grieve. They grieve for their declining physical abilities, inability to interact normally with their friends and their inability to participate in school and play. They also worry about their family. Who will take their place in the family? It is important for parents to remember that however hard it is to lose a child; a dying child is also losing everyone and everything that is precious to him or her.
Easing the End of a Child’s Life
Many children suffer unduly because parents – and sometimes physicians – are reluctant to withdraw treatments like feeding tube or respirator, that are sustaining life, of a dying child. Some people assume incorrectly that once a life prolonging measure is in use it cannot legally be withdrawn. But this is not the case when the patient is near death with no chance of recovery. It is perfectly natural for parents to regard feeding a sick child as loving, nurturing act. But as with an adult, a child approaching the end of life cannot make good use of the food, which can sometimes cause more harm than good. In fact, according to doctors, feeding may prolong the dying near the end of life. It can also cause congestions, excessive bodily secretions, and discomfort. Pain management often presents another dilemma for the parents and doctors. Doctors are afraid of giving too much pain medicines, out of fear of hastening the child’s death. However, pediatric palliative care doctors believe that, “such fear is misplaced on clinical, ethical and legal grounds.” Studies have shown that “patients who receive effective pain relief may actually live longer than patients whose pain is untreated.”
In other words, neither parents nor physicians should hesitate to provide however much pain medication dying children may need to make their last days as comfortable as possible. Indeed, failure to adequately control a child’s pain is the leading cause of intense parental distress and contributes to extreme and prolonged grief reaction after the child dies.
When a Child Dies Suddenly
As difficult as it can be to have a child die from a incurable illness, at least parents have a chance to gradually come to grips with the inevitable outcome and say their good-byes. However a sudden death of a child – either from a sudden illness or injury or poisoning or suicide – can be emotionally catastrophic for the parents.
Often, parental feelings are intensified by guilt: why did I leave those pills around where the baby could find them? Why didn’t I walk my son to school? Why didn’t I realize how sick she was instead of waiting so long to take her to see the doctor? And so forth.
When a child dies suddenly, the family typically has had no prior relationship with the hospital emergency room. Too often, parents perceive the hospital emergency room physicians and staff as “uncaring” or “detached” or “unemotional.” But what many parents don’t realize that doctors, nurses are taught to be professional and not to be emotional while doing their duties. However these days medical students and doctors are being taught to loosen up and show empathy and emotion. Medical and nursing staffs often have to work for hours or days to try to save a child. When the child dies, it is also emotionally very hard for them.
Care after a child Dies
Care of the child – or the family – does not stop after the child has died. In fact, when a fatally injured child has been declared brain dead, parents may demand that treatment with life-supporting measures be continued for a time. Although there are no legal grounds on which to base such treatment, continuing with it for a while can give families time to absorb the devastating news and help them come to grips with the tragic reality.
After a child dies, family should be provided the opportunity to spend time alone with their child and to say good-bye. Family members often want to hold and rock the child, and bath and dress the child. Also helpful to families is to obtain such keepsakes as a lock of child’s hair or an imprint of child’s hands or feet.
These acts have proved to be highly beneficial to grieving families. Family members also may benefit greatly from meeting with non-medical personnel – a chaplain, social worker, or psychologists. Their services should be extended not only to the parents but also to grandparent’s siblings, friends, and classmates of the dead child. (Brody)
Children’s Hospice
Children’s hospice is a hospice specifically designed to improving the quality of life of children and young people who are not expected to live to reach adulthood and their families. They provide flexible, practical support at home and in the hospice to the entire family, often over many years and at any stage of the child’s illness. When the end of a child’s life approaches, children’s hospice services are there to provide end-of-life care to the dying child. They also provide support to the family.
A typical children’s hospice service offers:
- Specialist children’s palliative care, respite care, emergency, and terminal care. This may be at the hospice or within the child’s home.
- Information, advice and practical assistance 24 hours a day.
- Physiotherapy and many complementary therapies like music and play therapy.
- Bereavement counseling and support to the family and siblings.
Conclusion
6.6 million children under-five die every year worldwide. The numbers are huge. Most of these deaths are preventable-by proper nutrition, sanitation, immunization, and timely medical care. Many older children die from illnesses, accidents, poisoning and suicides. The death of a child is very traumatic event for the whole family, including the surving siblings. Like adults, dying children and their family care do need palliative care.
Sources:
- Wikipedia.org./Children-hospice 2/5/2014
- Ryan House.www.ryanhouse.org
- Brody Jane, “Jane Brody’s Guide to the Great Beyond, “New York: Random House, 2009 (has an excellent chapter on “When a child dies”)
- Sirois, Maria, “Every Day Counts. Lessons in Love, Faith, and Resilience from Children Facing Illness” New York: Walker and Company, 2006
