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Death Education as It Relates to Children and Their Caregivers

Summary:
Parents, physicians, nurses, child life workers and educators need knowledge about death in order to fulfill their responsibilities to children. Death education promotes acknowledging our personal mortality, an essential for achieving a quality of life. It promotes knowledge and can change attitudes and behaviour. Such education encompasses the meaning of death, attitudes toward death, the process of dying and bereavement and care of the terminally ill.
Japanese

Keywords: death, taboo, mortality, terminal-care, bereavement, truthful, pain, grief, mourn, physician, nurse, child life worker, educator, curriculum



Scope of Discussion

I asked young friend if his five-year-old twins had experienced death close at hand. He said their neighbour, Harry, had died, but they hadn't mentioned it to the boys, and even though they often visited with that neighbour and his wife, they hadn't gone to see them recently, since they were afraid the boys would ask where Harry was. Death is a taboo subject. We don't like to use the word "death." We speak of the person as "passing on" or "went to God" or "Isn't with us." When it comes up in conversation, we often steer the conversation away from that discussion. The word "death" brings to mind people we miss, and we suffer when are reminded of that loss. Depending upon our faith, we aren't sure what happens when someone dies, so that unknown is frightening. We are afraid of the pain our dying might entail. Children must be highly confused; death must seem reversible when they see actors portraying characters on TV and in movies being killed in one episode and the actor turning up in other portrayals. Some cultures yearly honour or celebrate those who have died, and the children from those cultures must, to some extent, come to realize that death is a factor of our existence on earth, that our life has a beginning and an ending. In Canadian and American societies family members often live far from each other, and the critically ill die in hospital, so our children seldom experience first-hand the death of a grandparent or someone close. We live as though we are on this earth forever. What might happen if we address this taboo and talk more about death?

Elizabeth Kubler-Ross wrote, "If all of us would make an all-out effort to contemplate our own death, to deal with our anxieties surrounding the concept of our death, and to help others familiarize themselves with these thoughts, perhaps there could be less destructiveness around us." (Kubler-Ross - 12) I interpret her message to be that if we truly realize that our life has an ending, we need not try to control every situation to meet our best interests since we may not be around anyway. We can focus on understanding the points of view of others and solving problems by cooperation and compromise rather than by war and killing, and we don't have to spend time and energy worrying about death but can make the remainder of life worthwhile. Differing religions and customs figure prominently in beliefs around death, but there are issues that all of us have in common. This paper explores briefly: (1) how children at various age levels view death; (2) a survey of how Canadian institutions that teach professionals deal with the issues about death; (3) how doctors, nurses and child life workers deal with the death of a child and counsel other children on the ward; (4) death as a necessary part of education in preschool, elementary, high school, college and university courses. It is hoped that readers of this paper will contribute their thoughts, experiences and advice to further our understanding about death.

 

How Children at Various Age Levels View Death

Even the very young child has had experiences with death. They see dead birds, a squashed worm or watch a fly getting swatted by a parent. Children want to learn about the world, and they need to learn that death will happen to every living thing. The caregiver discussing death with the child must be someone the child trusts. Children from an early age learn to read our gestures and to notice the changes in our tone of voice. They will know if we are not forthcoming and truthful. Wilken wrote: "The truth helps them understand what is real, and what is imaginary. Just like adults, children need to be able to feel pain, mourn and grow." In defining death use specific terms, for example we can say: "When someone dies the body is no longer working. The heart stops beating. They no longer need to eat or sleep, and they no longer feel any pain. They don't need their body any longer." (Wilken - 1,2) Facing reality aids in forming the child's personality, enables the child to become adaptive, to learn how to handle stress and disaster, and to take a place in his society. The individual who feels his life has accomplished something, that his life had meaning, can meet death without anxiety. (Feifel - xi-xiii)

Preschool Children: Maria H. Nagy studied 378 children from age three to ten years of age living in Budapest. She had the older children write down words about death that came to mind, draw pictures about death that came to mind, and she talked to each child about death. She concluded that children under the age of six don't recognize death as irreversible, they think of it as a painful separation. The dead person closes his eyes, but he knows what is going on in the world until he is put into the ground; he is like a piece of wood. They begin to ask where the person went and what the dead person is doing believing that angels have jobs to do. (Feifel - 79-98) Even a simple answer like the dead person is in the cemetery will usually satisfy the child. When we use words like "sleep" or "long trip" to describe death, the child will believe that the dead will wake up, and that child may be afraid to go to sleep at night. They are likely to believe that their thoughts created actions. For example, the child who was angry at his mother before she dies, may believe that he caused her death. They are concerned about who will care for them. (Wilken - 1)

Elementary School Children: Children are curious and need concrete terms describing the physical details about death. (Wilken - 2) About one third of children this age fantasize and personify the dead. For example they imagine that the dead are skeletons that do bad things or death-men that come to carry you away at night or ghosts that some people can see at night. They understand that death is an eventuality, but they try to keep distant. (Feifel - 79-98) At this age parents may wish to share their beliefs about an afterlife. Children feel abandoned when a parent dies and worry about who will look after them. The nine-year-old may believe that when he/she makes a wish it will come to pass. For example, if a sister dies they may feel guilt if, in the heat of an argument, they had wished for the sister to vanish and then she died.

High School Children: Teenagers live in a transitional world. At times they are the dependent child and at other times behave like an adult. They live in the present. The future seems risky, the past is vague. The teenager isn't sure of his identity, he feels like a beginner in an ambiguous future. (Feifel - 99-113) These children know that death is permanent, and questions about mortality come up. They tend to search for a meaning in the death of someone close and begin to search for meaning in their own lives. They often express guilt if someone close to them dies believing that they could have saved the person; in this case they may also feel abandoned and afraid believing that they have to manage the complexities of everyday life on their own. If a friend dies in an auto accident, they may be afraid to ride in a car, but the caregiver can point out how sad and frightening the accident was and point out the ways to stay safe and healthy like not riding with a driver who has been drinking and the practice of using a seat belt. (Hospice - 4)

 

Child's Grief

Primarily children need reassurance that they are not alone in their grief and that you as their parent, doctor, nurse, child life worker or teacher will be there, as needed, to help them live a healthy and safe life. There is no time limit about experiencing grief. Caregivers can point out ways that we will always remember the person who is deceased.

Recognizing the Signs of Mourning in Children:

a) they may feel anxious and insecure; young children often become clingy and demanding
b) memories may spawn nightmares
c) they may fear sleeping
d) they may be sad and longing and may try to protect their parents by hiding their worry
e) some children feel anger at God, at a parent or at themselves and need help to realize that their anger is misplaced; they may act out with hurtful or unlawful behaviour
f) in school the child may have difficulty concentrating and be preoccupied with memories and wishes
g) some children experience physical symptoms such as headaches, stomachaches or may experience the same symptoms that the deceased had. (Wilken - 2-4)


Helping Children with Grief: The caregiver needs to be a good listener. By encouraging the child to talk, his/her misconceptions will be revealed and can be corrected. The child also learns that it is okay to feel grief and mourn. Children need rituals. Attending or helping to plan a funeral or a memorial service makes the death seem more real and allows a time for mourning, which aids in an acceptance and promotes the healing process. The child may want to draw pictures, write letters or talk to the deceased. All of these things should be encouraged. For a time carrying something that belonged to the deceased may be helpful. Teenagers often hurry to replace the dead person with a new relationship such as a girl finding a boyfriend. It is the way that child seeks the security he/she misses. Support from their peers and from trusted adults is essential. (Wilken - 1-7; Hospice - 11-14)

 

How Institutions Teach Professionals to Deal with the Terminally Ill, Death Education in Canadian Professional Schools

A 1990 survey was conducted by John D. Morgan of King's College, University of Western Ontario, London, Ontario to investigate how understanding death was incorporated in professional training.

Medical Schools: 100% of all med schools in Canada reported that they covered death in their curriculum; 28% of the institutions said it was integrated throughout; 6.7% of the schools said they offered a full course; 13.3% said that they taught through seminars. The study found that the teaching centered on practical questions that affected the doctors' everyday work. Although no school listed the number of hours devoted to each topic, the school reported that: different models of terminal care were included; different views of afterlife were ignored; bereavement was taught in a number of schools. The study concluded that training for physicians focuses on preventing sickness and death, but needs more education about death and caring for the terminally ill.

Canadian Nursing Schools: 100% of nursing schools cover the topic of death; 91.3% said it was offered in undergraduate training; 4.3% said it was covered at the graduate level. Models of terminal care were taught by 34.8% of the schools. Areas covered were: children's concepts about death, suicide, differences in cultures and assistance in development of a philosophy of life. Methods of training were: short seminars, workshops, personal reading, and some clinical experience. The study concluded the nurses are not adequately taught how to deal with death and the terminally ill.

Religious Seminaries: Only 35.7% of the responding schools indicated death instruction in any form; 80% of those responding covered that subject under pastoral studies; 20% of those responding taught it through religious studies; others taught is through crisis management. Not one of those responding had a full course about death. Their curricula did not cover the language used around death, the North American practices in caring for the dead, terminal care, a legal definition of death or cultural differences concerning death. Five responders did not give the time allotted but reported covering anxieties related to death, children's concepts, helping children cope, views of life after death, bereavement, suicide and the development of a personal philosophy.

Public and Private Education for Children and Young Adults: Morgan's study includes programs designed by Canadian and American educators, which incorporate death in schools curricula. (Morgan - 1-281).

 

How Professionals Deal with Death and Death Education

Physicians: Ashley wrote from the physician's point of view. She believes that "helping a patient come to grips with his own death is an inspiring experience." Doctors are expected to be part of the birth experience, and they should be midwifes in the death process; however, doctors concede to others because of lack of time and because we're afraid of the experience. Doctors don't know what to say. Doctors have taken on the role of addressing pain and treatments, use of medications and deal with anxious parents. They respond to the parents' questions: What will happen? When will my child die? And respond to the parents' requests for medications. Many parents (62%) have looked on the internet for advice about their child's symptoms, and they need a response to their concerns. Ashley believes that the child's hearing is the last to go, that touching the skin is comforting to the dying child. The physician can show the parents what the child needs in his/her last moments. She describes her job in looking after the terminally ill: We should talk to the child and the parents and tell them what will happen to their terminally ill child. Children understand more than we think that they do about death. "They pick up on the vibes around them and their fantasies are often scarier than what they are going to experience." Ashley believes that parents and siblings should be part of the death process. Some doctors cry with their patients; others don't. She says that there is not enough time for the human side of care. If the physician sees the death as a professional failure, he/she has trouble coping. Doctors should focus on what they did for the child and his family and the sadness it has brought rather than look upon the death as a failure. (McKelvey - 54-64) Physicians must honestly and compassionately tell the parents what they need to know about the life-threatening condition of their child. They should have protocols, checklists, model conversations and financial policies. Physicians need to make administrative decisions: for example, whether to schedule more tests or let the terminally ill child spend a day away from the hospital. The hospital team needs to decide how to deal with the friends of the deceased who are on the ward, which children will be told about the death, and among the staff, who will fulfill this responsibility. I think that the friends of the deceased child should be told about the death, but that it should be pointed out how different his/her condition is from that of the deceased child. The children should be left with hope that their outcomes will be different. Questions are likely to arise by the friend of the deceased when the nurse or child life worker is with that child, and the nurse or child life worker may be the best person to deliver the sad news. At other times the physician may engender the most confidence, and he/she should tell what happened.

Nurses: Nurse Karen wrote concerning the nursing responsibility regarding the terminally ill. Nurses should be sure that the child is as comfortable and free of pain as possible. The child should be told what is happening, otherwise, he/she will feel that he/she has failed to make himself well. Karen encourages the child to talk about his/her fears and dreams. Some children are able to help with the funeral or make final requests which should be honoured, if possible. The nurse should listen to the parents as well and be aware of gestures that indicate their fears. If the parents don't understand what is happening, they may fight or express anger in front of the ill child, which will affect the child's peace of mind. Karen sees the importance of silence when the physical presence of family members or a member of the hospital team is enough. Karen remembered a time when during the child's death, the child spontaneously expelled fecal material, and she recommends that the nurse should tell the parents what is happening so that there will be no surprises.

The Child Life Workers: Play is an important tool to the dying child. It helps to maintain normalcy, play gives the child a chance to control his environment, to make discoveries and to understand painful treatments through playing with dolls. Unlike adults young children don't have the words to express their fears and dreams, but play allows them an outlet to dream or remember. For example, when the child is away from his parents, playing to wash dishes is a way to picture the comfort of remembering how mom is working in the kitchen, or playing to drive a car makes the child feel close to his dad. Play reveals what the child is thinking so that the child life worker can put those thoughts into words. Adolescent children often experience anger, fear and then sorrow, which can be expressed through art, music and dance becomes an unspoken acknowledgement of how they feel about what is going on. Their creations may be ways for the child to say goodbye. Creating something can give the child a feeling that he is leaving behind something memorable just as telling the child how much he is loved gives the child a feeling that he leaves a legacy of love. (Carter, 183 - 192; Plank - 1-86)

Nursery School: Maureen answered by e-mail about death education in her school. She teaches in a multi-age Montessori Pre/Kindergarten classroom. There is no fixed course to teach about death and grieving, but she addresses these subjects as they arise in her class of 24 children ages three to six. She wrote: "I have found it beneficial for children to talk freely about the person (or animal) that has departed. At morning circle time, one of my five-year-olds recently shared a photo in a keepsake box. Her grandmother had died of cancer just four weeks before. It was evident that she was still trying to make sense of her grandmother's death. She told us about where her grandmother had lived, and the fun she had visiting her in Arizona. When she shared about her grandmother, some of her little friends spoke up and said that they too had someone special who had died. Some children talked about a family member who had died before their birth. This mutual sharing of experiences brought up feelings that were not easy to label, but served as a consolation for all of us. There was a peaceful silence in the room after we had talked."

Later Maureen asked her pre/kindergarten children students if they would like to know more about some things people do when a loved one dies. She wrote: "They seemed very interested. The next day I brought in Judith Viorst's book The Tenth Good Thing about Barney. The children were very engaged. Some children wanted to make a list of all the good things about the person that they knew who had died. Another recommended book is Leo Buscaglia's The Fall of Freddie the Leaf, which is a beautiful message about life's varied seasons. Weeks later other children brought in mementos of someone who had died. By talking and sharing, we realize that we are not alone, and we find comfort in our community at school.

Elementary School: Barbara King, of South Bergen Memorial Health Centre in New Jersey, has written a curriculum for teachers of seven to nine-year-olds. There are two four-hour sessions when teachers and support staff learn techniques to incorporate in classrooms. This is followed by a program for parents. (Morgan)

Books for Early Readers Include:
Vera and Bill Cleaver, Grover. (Ten-year-old Grover deals with his mother's death. Fiction.)

Clifford, Eth. Remembering Box. (Nine-year-old Joshua visits his grandmother on the Jewish Sabbath which later helps him understand her death. Fiction.)

Holden, Sue. My Daddy Died and It's All God's Fault. (Young Chris tells his story of sadness, anger, false guilt and confusion.)Krementz, Jill. How it Feels When a Parent Dies. (Eighteen young people ages 7 to 16 tell their stories.)Richter, Elizabeth. Losing Someone You Love: When a Brother or Sister Dies. (Sixteen young people write about their experiences.) (Wilken - 6)

High School Curricula: Kalafat, Jakubik and Underwood have written a program for eighth graders and beyond called "LIFELINES." It helps the adolescent understand his development and capacity to handle frustration, to make choices and decisions involving life problems. It explores suicide. (Morgan - 35,36)

Robert G. Stevenson of Oradell, New Jersey has written a curriculum dealing with bereaved children who have lost a loved one. One in twenty children has lost a parent by high school age. He writes that those children have lower academic performances and have trouble with peer relationships. They are potentials for suicide. Many exhibit persistent daydreaming, withdrawal from socializing with their peers, poor school work, overt cruelty and violence. Stevenson suggests ways to process grief by introducing support groups that are available, and helping the child find a surrogate. The writings and art work of these students often reveal that they are having a difficult grief process. The course involves talking, art and music and covers why we die, euthanasia, what is beyond death (belief systems), grief and bereavement, death rituals, suicide and prevention. (Morgan - 45-47)

University Level Curriculum: The course complied by Morgan describes 60 hours of class-time including writing and selected reading assignments. (Morgan - 162-166)


Conclusions

Medical professionals and educators can teach about death and encourage conversations which can remove the taboo associated with death. Being up-front and truthful with the child and parents about the child's impending death and palliative care can eliminate much of the stress involved in worry about the unknown. When the patient believes that he/she is loved and leaves behind a legacy, he can accept death. Such practices can lead to a peaceful death.



 

References:

Carter, Brian S. M.D., F.A.A.P. and Marcia Lavetown, M.D. (2004). Palliative Care for Infants, Children & Adolescents, A Practical Handbook. The John Hopkins University Press, Baltimore, London.

Feifel, Herman (1959, paper-back 1965). The Meaning of Death. McGraw Hill Book Company.

Hospice. "talking to children about death." (http.www.hospice talking to children about death)

Kubler-Ross, Elizabeth (1969). On Death and Dying. Collier-Macmillan Ltd., London.

McKelvey, Robert S., M.D. (2006). When a Child Dies. University of Washington Press, Seattle and London.

Morgan, John D., PhD., General Editor (1990). Death Education in Canada. King's College, Ontario, 266 Epworth Avenue, London, Ontario M6A 2M3, Canada.

Plank, Emma N. and Marlene A. Ritchie (1962). Working with Children in Hospitals. The Press of Western Reserve University, Cleveland, Ohio and reprint by MetroHealth Center, Cleveland, Ohio.

Wilken, Carolyn S., PhD. and Joyce Powell (1991). Learning to Live Through Loss: Helping Children Understand Death. national network for child care. Portions: "with permission of the National Network for Child Care - NNCC, Wilken, C.S. & J. Powell (1991). Learning to Live Through Loss: Helping Children Understand Death. Manhattan, KS, Kansas State University Cooperative Extension Service."

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