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When a Child Dies
by Lucia Aite

The author has been working in the Hospital Bambino Gesù, Rome, since 1997 as a Gestalt Psychotherapist. Lucia works in a multi-disciplinary team of the Neonatal Intensive Care Unit, which follows couples having a child with a congenital anomaly, requiring surgery at birth, from pregnancy until and after birth.

“Bereaved parents learn to live with memories, lost hopes, shattered dreams. They never get over the death, but they do recover, adjust and learn to live with their pain.” (Donnelly 1982)

The loss of a child is particularly stressful. When the death is caused by a malignancy, the parents not only suffer the loss, but are usually exposed to the protracted physical and emotional suffering of their child.

These are the words used by a mother to describe her inner emotions after her child’s death: “Children are not supposed to die.”

Parents expect to die and leave their children behind. This is the natural and most frequent course of life’s events. This is one of the reasons why the death of a child represents for parents the loss of the future, of hopes and dreams. The loss of a child is not only painful but profoundly disorienting for parents because, “Children, are not supposed to die.”

Facing the gradual and inevitable death of a child is a traumatic event for parents. The most frequent expressions used by parents to describe their feelings are, “It was as if our world was falling apart” or “I just couldn’t believe it was happening to me. I kept repeating to myself that it was just a terrible dream.” From the point of diagnosis until after their child’s death, parents experience ups and downs of intense emotions and often feel alone, disoriented and alienated.

Following the diagnosis, the family’s life changes and will never be the same. The future suddenly becomes incognita - a source of intense fear.

Caregivers, regardless of their specific role, must bear in mind that there are many ways to grieve. There is not a timetable for grief’s duration and there are no rules or protocol for grieving. Rando (1986) says, “Grieving parents are survivors and each survivor travels his painful road in a way each maps out by himself. In fact each parent must find his own way to deal with the contradictory burden of wanting to be free of this overwhelming pain and yet needing it as a reminder of the child who died.”

The death of a child is probably the most devastating experience a couple face but we have to be aware that mothers and fathers grieve very differently and have different needs along their journey. Usually mothers express their feelings of sorrow, anger, desperation and emptiness more frequently than fathers. Mothers usually express more frequently their need to go to the cemetery. In this regard, I remember a mother explaining to me that she had to go to the cemetery every week because it was the only thing she could do to take care of her child.

The main duty of caregivers is to be present, to listen, and to offer a safe space free of judgement in which parents might slowly express their emotions, desires, fears and memories. In this regard palliative care has a pivotal role.

The American Academy of Paediatrics (2000) defines palliative care as, “…a model of caring for patients and their families who suffer life-threatening illnesses.” Palliative care strives to relieve pain and other symptoms of suffering but also focuses on the spiritual, emotional, psychological and social needs of both the child and his family. The International Society of Paediatric Oncology emphasizes that the need for professional pain control in paediatric palliative care is both beneficial for the child itself and also for the bereaved parents in the long-term. Some studies suggest that by improving pain control and by reducing difficulties at the moment of death in children with cancer, the long-term distress in surviving parents may be reduced.

As suggested by guidelines for assistance to terminally ill children, palliative care, in the terminal phase of cancer, should be tailored to the needs and desires of the child and the family, with the goal of providing the best possible quality of life for the days that remain. Moreover it is suggested that the child should know as much as possible, and which is developmentally appropriate, about the seriousness of his/her situation.

The way a child approaches dying is crucial for the quality of his death and for his family because it will remain in his family memories for ever. Whatever the state of the child entering the terminal phase of the illness, it is essential that he or she receives adequate medical, spiritual and psychological support. At no point should the child feel abandoned. Regardless of their age, children with cancer often reach an understanding of what death means and have their own way of expressing their knowledge and emotions about death. Therefore an open environment where the child feels free to express concerns and worries an integral and essential part of caring.

Moreover, bereavement follow-up care of parents and siblings should be considered as an integral part of terminal care. Routine contact with the family for at least 2 years on the significant anniversary dates is often welcomed and accepted as a token of the continuing commitment of the team to the psychological health and well-being of the family.

Different authors agree that palliative care should be carried out by a multi-disciplinary team and that this is the only way to wholly take care of the child’s and family members’ needs. In fact a well trained palliative care team can make all the difference in the way death is experienced by children, their families and health care providers.

 

Bibliography

Clerici CA, Ferrari A., Casanova M. Assistance to parents who have lost their child with cancer. Tumori 2006;92: 306-310

Gooenough B., Drew D., Trethewie S. Bereavement outcomes for parents who lose a child to cancer: are place of death and sex of parents associated with differences in psychological functioning? Psychooncology 2004; 13: 779-791

Jankonvic M., Masera G., Uderzo C., Conter V., Adiamoli L., Spinetta JJ. Meetings with parents after the death of their child from leucemia. Pediatr Hematol Oncol 1989; 6: 155-160.

Masera G., Chesler M. Guidelines for assistance to terminally ill chidren with cancer: a report of the SIOP Working Commitee on Psychosocial Issues in Pediatric Oncology. Medical and Pediatric Oncology 1999; 32: 44-48

Norberg AL., Lindblad F., Boman KK. Coping strategies in parents of children with cancer. Soc. Sci. Med. 2005; 60: 965-975

Oppenheim D. How to help the child and his/her family to go through the ordeal of cancer. Rev. Prat 2007; 31: 1098-1103

Postovsky S., Arush M. Care of a child dying of cancer: the role of the palliative care team in pediatric oncology. Pediatric Hematology and Oncology 2004; 21: 67-76

Whittam EH. Terminal care of the dying child. Psychosocial implication of care. Cancer; 15: 3450-3462

 
 
 
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