The dying childBMJ 1998; 316 doi: http://dx.doi.org/10.1136/bmj.316.7141.1376 (Published 02 May 1998) Cite this as: BMJ 1998;316:1376
- Dora Black, honorary consultant child and adolescent psychiatrist
This is the eighth in a series of 10 articles dealing with the different types of loss that doctors will meet in their practice
Series editors: Colin Murray Parkes and Andrew Markus
The terminal phase of a life threatening illness may be defined as one where curative treatments are not applicable but palliation is given. There is evidence that children, even young ones, are usually aware that they are dying. They may pick up these cues from parents and hospital staff, who in one study gave significantly less time and attention to children who were terminally ill than to others.1 They may not let anyone know that they know. Child and parents may maintain a “mutual pretence,”2 and yet families who have an open communication fare better psychologically. The refusal of parents and medical carers to talk about issues of death and dying with children who have life threatening diseases impedes coping for the whole family.3
Parents appreciate staff openness and many years later remember vividly the method of imparting the bad news. Accurate information, delivered with skill and sympathy and updated regularly, lessens the parents' sense of helplessness and isolation and sets up a therapeutic alliance.4
Children with life threatening illness often know that they are dying but seldom have the opportunity to talk about it
Children are usually less upset when they are cared for at home than in hospital and their long term outcome is better; children's hospices can provide specialist and respite care if it is needed
Both parents and siblings are at risk for psychological disturbance when a child is dying; surviving children may need information, explanation and support
When death occurs siblings and parents may be encouraged to view the body and attend the funeral
Professionals benefit from training in communicating with parents and children faced with the death of a child
Children can be treated in a hospital ward, a hospice for children, or at home. Parents are more anxious, depressed, and defensive after death in hospital than at home, and when children die at home the long term outcome is better for the parents,5 although the reactions of siblings have not been similarly studied.
Although children's hospices have been in existence for only a short time, they do have a specific role and can be helpful in providing respite care. When dying at home is not an option because of the complex medical and nursing needs of the child, or because of factors such as the needs of siblings or others, they can provide terminal care.6
Effects on siblings
Siblings' understanding of illness seems to be related to age. Delays in understanding concepts, compared with healthy children, may be caused by avoidance of discussion of illness in families with sick children.9
Siblings of dying children have about double the risk of developing psychological disturbance; this seems to be related to demographic characteristics of the family, level of family functioning, and characteristics of the disease. Knowledge of illness is different in siblings of ill children than in siblings of healthy controls. Nevertheless, most siblings of sick children seem to be well adjusted and do not have a psychiatric disorder. Most studies have been cross sectional and have not looked at long term effects. Clinical experience leads one to try to offer preventive intervention counselling for all siblings of dying children.
Effects on parents
Mothers, more than fathers, are involved in nursing and caring for dying children and have therefore been more extensively studied. Several studies have found that mothers have an excess of depression. 10 11
Mothers have reported a greater degree of difficulty with the problems of helplessness, loss of confidence in the ability to be a good parent, financial difficulties, being avoided by others, growing apart from their spouse, and fear of being unable to cope if the child should die than have fathers, who reported significantly greater difficulty with two problems—feeling left out of the ill child's life and being worried that their spouse was too preoccupied with the dead child.12 In a systematic eight year follow up study Lundin found more evidence of persisting tearfulness and grieving among parents who had lost a child than among widows and widowers, but the widows and widowers were more likely to continue to think about their dead partner and to express feelings of guilt.13
Attempts to keep secret from both patients and their siblings the fact that a child has a terminal illness often fail—and create more problems for the family
Parents may feel that they can never recover fully from the loss of a child. They may adjust to it, they may be able to resume their everyday activities, and they may even derive pleasure from life, but they feel they remain vulnerable.14 For some parents, the new identity is a stronger one—they feel they have been “through the fire” and that nothing can affect them so profoundly again. The cost may be a reduction in their sensitivity to their other children or their partner, which may threaten the marriage or even disrupt it.
Effects on marriage, family, and coping
Marriages are stressed by the demands of treatment for serious illness and by the death of a child. Often the treating specialist hospital is at a distance and parents are separated as one accompanies the child and the other tries to keep the rest of the family going and earn a living. It is surprising therefore that most studies have not found an increase in divorce or separation, although marital distress is increased and this becomes worse as the disease worsens.15 It seems that the stress of a serious and prolonged illness in a child is likely to make a poor marriage worse, but it may strengthen the relationship in an already close marriage, thus balancing the statistics.
A study of long term adjustment in families of children with cancer compared 38 families of a child who survived five years after treatment had ended with 13 families whose child had died. Five years after the death, the families of children who died scored at less adaptive levels of functioning on items measuring return to normal activities, zest for living, making plans for the future, recognising and accepting the family members' needs, admitting the need for emotional support from friends or family, and having placed the cancer in a less overwhelming perspective.16
Another study looked at the coping strategies of parents of children with cancer and found that they were not related to income or gender.17 Parents who had a good relationship with the medical staff tended to use coping strategies such as denial, acceptance, or reliance on religion. The more highly educated parents tended to use information seeking as a coping strategy rather than the other strategies.
Death of a fetus or neonate
Miscarriages, induced termination of pregnancy, and stillbirths all provoke a grief reaction. It is likely that the degree of grief is directly related to the length of gestation and to whether it was a wanted child.18 Ultrasound imaging of the fetus has resulted in earlier recognition of its humanity and may have increased the likelihood of a more severe grief reaction. Viewing the stillborn baby aids the resolution of grief, as does a proper burial or cremation ceremony. Most women who spontaneously miscarry or have a stillbirth or neonatal death feel that they are failing in their reproductive function, and would benefit from counselling.
When a child dies in the womb, parents and siblings need information and support. Grief is a natural reaction
Many deaths in the first four weeks of life are related to congenital abnormalities in the infant, and parents need much support and informed advice, including genetic counselling, before they embark on further pregnancies. 19 20 The sudden infant death syndrome is the commonest cause of infant death between 4 and 52 weeks of age and causes high distress because of its suddenness, unexpectedness, and uncertain aetiology.21
One controlled study has shown that brief counselling can significantly reduce morbidity in parents after a perinatal death.23 White and colleagues provide a useful source of advice.24 The Stillbirth and Neonatal Death Society, The Compassionate Friends, and the Foundation for the Study of Infant Death offer volunteer counselling in many parts of Britain, as does Cruse Bereavement Care.
Stillbirth And Neonatal Death Society (SANDS), 28 Portland Place, London W1N 4DE (tel 0171 436 7940)
The Compassionate Friends, 53 North St, Bristol BS3 1EN (tel 01179 539 639)
Foundation for the Study of Infant Deaths (FSIDS), 14 Halkin St, London SW1X 7DP (tel 0171 235 0965)
Cruse-Bereavement Care, 126 Sheen Rd, Richmond, Surrey TW9 1UR (tel 0181 940 4818)
Helping the family of a dying child
The primary health care team may feel sidelined when a child has a terminal illness. These deaths are so rare, and the treatment of the life threatening illness that may have preceded the terminal phase may have been in the hands of specialists in a distant hospital, who may have maintained only formal and minimal contact with the general practitioner. One study found that family doctors rarely inquire about family functioning when a child is ill.22 Caring for a dying child at home will inevitably involve family doctors more, and parents appreciate the interest expressed by their practitioner, even if he or she cannot cure their child.
The health visitor or practice nurse, or the general practitioners themselves, might find the time to pay a regular visit to the family or invite them to the surgery to review the functioning of each member of the family; attend to communication within the family, especially to the children; and check that all the social benefits to which the family are entitled are being claimed. As death draws near, there needs to be an increase in the emotional care of the family, ensuring that the children have been informed of what is likely to happen and that there is a mobilisation of family and neighbourhood support. A review of the effects of bereavement on the different members of the family is helpful in calming the bereaved person's fears that his experiences betoken insanity. Siblings will usually benefit from being included in the funeral and viewing rituals, but they need proper preparation and explanation beforehand. They need to understand the permanence of death. Counsellors must respect the religious beliefs of the family and be prepared to discuss with parents how they can communicate with their surviving children (box).
Communicating religious beliefs about death of a sibling
When there is a belief in an afterlife, it is important that children understand that it is not the dead body that goes to heaven but that the parents believe that the dead child's soul is in heaven. Souls can only exist in a live person; when the body of that person dies, the soul flies off to heaven to live with God. Since the child's soul hasn't got a body to live in, she cannot return to earth.
Support for the family is needed whenever a child dies, and members of the primary care team are usually best placed to provide it
When a death during pregnancy occurs, parents in their distress may omit to let the siblings know what has happened. The children may have been told that mummy is having a baby—and then no baby appears. The family practitioner could check that the children know what has happened and why and that they know that it was not their fault.
Continuing education for the primary care team
Although many general practitioners and their teams are comfortable in talking to adults about their impending death, they may feel less comfortable in talking with children. They may need more training in understanding the psychosocial aspects of children and death and the techniques of bereavement counselling. Some medical schools are tackling this problem with courses on communicating with children and on bereavement counselling,25-29and many training courses for general practitioners have at least one lecture on the subject. Cruse and other organisations run courses on bereavement counselling.
The articles in this series are adapted from Coping with Loss, edited by Colin Murray Parkes, which will be published in July.
Funding: No additional funding.
Conflict of interest: None.