a Child Dies
by Lucia Aite
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 childs 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 lifes 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 couldnt 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 childs death, parents
experience ups and downs of intense emotions and
often feel alone, disoriented and alienated.
Following the diagnosis,
the familys 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 griefs 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,
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
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 childs 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.
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