Shap Journal 2001/2002

Living Community

Living Community - Enhancing the
Quality of Experience in Childrens Hospices

Erica Brown

‘Oliver, being left to himself in the undertaker's
shop, set the lamp down on a workman's
bench, and gazed timidly about him with a
feeling of awe and dread, which many people a
good deal older than he will be at no loss to understand. An
unfinished coffin on black trestles, which stood in the middle
of the shop, looked so gloomy and death-like that a cold
tremble came over him, every time his eyes wandered in the
direction of the dismal object from which he almost expected
to see a frightful form slowly rear its head, to drive him mad
with terror. Against the wall were ranged, in regular array,
a long row of elm boards cut into the same shape: looking,
in the dim light, like high shouldered ghosts with their hands
in their breeches' pocket. Coffin plates, elm chips, bright
headed nails, and shreds of black cloth, lay scattered on the
floor; and a wall behind the counter was ornamented with a
lively representation of two mutes in very stiff-necked cloths,
on duty at a large private door, with a hearse drawn by four
black steeds, approaching in the distance. The shop was close
and hot. The atmosphere seemed tainted with the smell of
coffins’.

In Great Britain people often perceive children's hospices
as places where children with cancers go to die.
Research conducted in 1982 soon after the opening of
Helen House, the first children's hospice, found this was
a misnomer - only seven per cent of the young people
admitted had cancer related illnesses and only
marginally more than ten per cent were admitted for
terminal care. The reality is that every child who is
cared for by a children's hospice does have a life-
threatening or life-limiting condition but within 
each community there is to be found an atmosphere
which vehemently defies Oliver Twist's experience of a
place tainted with the smell of coffins.

Palliative care was first practised as long ago as 460 BCE
in Greek medicine by physicians such as Hippocrates.
Palliative care for children is a relatively new concept
with over twenty residential buildings operational by the
millennium and several more presently in the planning
stages. There is little doubt that this expansion is in
direct response to need. Through advancements in
technology and medicine many children with congenital
abnormalities are surviving. Over eighty per cent of
babies born with a birth weight of less than one kilo live.
Some of these children have complex medical needs for
which there is no reasonable hope of cure. Others have
conditions that may cause progressive deterioration
rendering them dependent on their families and carers.

Each children's hospice community embraces a
philosophy that aims to meet the psychological,
physical, spiritual and social needs of the child and their
family. It is a concept where there is a shift of emphasis
that focuses on quantity of life, towards a commitment
to care that enhances the quality of life. Such a
philosophy presents a major challenge both clinically
and culturally, demanding that staff work together to
provide seamless care that will meet the holistic needs of
medically vulnerable young people and their families.

Life-threatening and life-limiting conditions transcend
all races, beliefs and cultures. The 1991 census gave the
national statistic of ethnic minorities as 5.9% of the UK
population. Although this would imply that 1 in 17
families using a children's hospice would be from an
ethnic minority group, there will be regional variations
when the highest proportion of such families live in
urban populations. The influence of faith on peoples'
lives varies a great deal and cannot be predicted.
Religion may provide essential meaning, spiritual
support and moral guidance; it may influence practical
aspects of a person's daily life, or it may be only a mark
of community membership.

Children's hospices provide unique flexible and
responsive care, but we should ask ourselves whether
this care is truly matched to the holistic needs of
individual families.     Few professionals would
intentionally cause offence. However, where they know
very little about other peoples' lifestyles and values, the
quality of experience offered may be impoverished and
lead  to  individuals  feeling  marginalised  and
insignificant. No tradition should be reduced to a few
sentences and essentially it is impossible for non-
believers to fully understand another person's faith. All
families are unique and most professionals will have to
live with the discomfort of feeling de-skilled and
inadequate as they strive to support the families in their
care. This article sets out to explore how the living
community of a children's hospice might enhance the
quality of experience for families from ethnic minorities.

There may be great diversity of religious belief and
cultural practice among communities and the influence
of culture and ethnicity is often easier to recognise in
other people than in our selves. Some families are
extremely devout and find the focus of their lives in
religion; others may have discarded most external signs
of religious practice but still retain a strong faith; some
have no faith but keep the values and religious
traditions in which they were brought up. For families
living in the face of adversity, faith and culture may
contribute a sense of familiarity and comfort because it
affirms their identity.

For many families who use Acorns Children's Hospice,
religious and cultural lifestyles are central to the way in
which they live. Daily observance may be expressed in
ways such as attention to hygiene, dress and diet.
Religious rituals often have an important spiritual,
social and emotional significance. They strengthen
bonds between people giving a shared sense of purpose
and meaning. But each family will have different needs
that may be influenced by a range of factors including
spiritual beliefs and personal experience.

Ritual and Ceremony

Much of life is made up of rituals and these are so
much part of everyday activity that we do not
necessarily think about their origins or their meanings.
Ceremonial processes are rich in symbolism. In the
symbolic forms of expression, a variety of non-verbal
ways of expressing feelings come into play. Every culture
from the most primitive to the most sophisticated, seem
to use these forms of ritualised expression to surround
important events. In other words, we need ceremonial
activity to give us a chance to act out the feelings that
are too deep to be expressed verbally. For families of life-
limited and terminally ill children, a funeral is a
statement of sustaining love and respect that is ongoing
even though a child has died. Hospice staff who witness
what takes place are constantly made aware of the fact
that what is important is not so much what is said at
such times as by what is implied by the coming together.
Often the more ceremony and ritual that is present, the
more opportunities there are for the expression of
feelings.

Last Rites and Funerals

For people with a strong religious conviction the
meaning of life and the meaning of death are in
inextricably bound. In many faiths life is a preparation
for death and the life to come. It is extremely difficult to
summarise the most common rituals and ceremonies
which occur at the time of death or immediately
afterwards. The guidelines that follow are an attempt to
share what families have taught staff working for
Acorns Children's Hospice Trust.

Christianity

•	The dying child may wish to receive Holy
Communion and/or The Sacrament of the Sick (or
Sacrament of Reconciliation).

•	The family may wish to say prayers thanking God
for the life of the child and the life to come.

•	Prayers may be said by the community on behalf of
the family and on behalf of the dying child.

•	A quiet place will be appreciated in order for the
family to pray or to talk with a priest or minister.

•	The family will want to make their own decisions
with regard to burial or cremation. In some
traditions Mass or Communion may be included in
the funeral service.

Judaism

•	It is usual for someone to be with the child at the
time of death. Some Jews would wish for a rabbi to
be present.

•	Shema is said by the by the relatives of the child
who is dying (The declaration of faith).

•	The child's body is washed by members of the
Jewish community (Orthodox).

•	In the Orthodox tradition physical contact with the
body may be avoided by members of the opposite
sex.

•	The child's body will be accompanied from the time
of death to time of burial.

•	The child's body will be buried as soon as possible
after death, preferably within 25 hours (but not on
the Sabbath or holy days).

•	In Orthodox communities close family members
will mourn for a period of 30 days after the child's
death.

•	In Orthodox communities close family members
will refrain from attending celebrations for the
period of mourning.

•	At the end of the period of mourning a tombstone
will be consecrated with a ceremony at the
cemetery.

•	Islam

•	If possible, the declaration of faith (Shahada) will
be recited before the child dies.

•	Parents will wish to have somebody with their
child if it is not possible for them to be there.

•	Family members will try to be together where
possible.

•	Post mortems should not take place except where
demanded by civil law.

•	The child's body will be washed 3 times and
dressed in clean clothes. Family members will wish
to wash themselves afterwards.

•	The child's head is turned onto the right shoulder
and then positioned facing Makkah (south-east in
the UK).

•	The child's body is covered with a plain clean cloth.
Parents will make the funeral arrangements.
Islamic law requires friends and relations to feed
mourners for three days after the death.

•	Burial will take place as soon as possible.
Cremation is forbidden.

•	The child's body may be returned to the place of
birth. In some cases the body may be embalmed
especially if the funeral takes place outside the U.K.

•	Relatives may wish to visit the child's grave
regularly on Fridays for up to 40 days after the
death. Mourning ends with a meal and Qur'anic
reading.

•	Families will appreciate being provided with
accommodation in a non-smoking and alcohol-free
place.

Hinduism

•	Parents will wish someone to be with their child if
they cannot be present.

•	Parents may wish their child to lie on the floor and
to sip Holy Ganges water or for this to be
administered through the child's naso-gastric tube.

•	The child's body will be washed after death by the
family or by members of the religious community.

•	The child's body will be wrapped in a white shroud
or white clothes.

•	A gold coin or leaf from the sacred tuisi plant may
be put in the child's mouth.

•	Family members will wish to keep the child's body
close to them or as close to the Hindu community
as possible until the funeral.

•	There should be an opportunity for the family to
talk to other family members or somebody from the
religious community (they may prefer somebody of
the same sex as themselves.)

•	The family will usually wish to make the funeral
arrangements. The first part of the ceremony may
take place at home.

•	Children under three years old will be buried.
Older children are usually cremated.

•	The eldest male in the child's family will play a key
role in the funeral service.

•	In India a period of 10 - 16 days is spent
mourning. In Great Britain there may be rituals
during the first year after death.

Sikhism

•	Sikhs will wish to be with their child at the time of
their death whenever possible. They may wish to
have portions of the Guru Granth Sahib read to
them.

•	After death the child's body will be washed and
dressed by members of the family or members of
the religious community. Yoghourt and oil may be
used for washing before rinsing with warm water.

•	Parents may wish older children to wear the live K's.

•	The child's body will be covered with a clean white
sheet and money or other gifts may be placed in
the coffin and cremated with the child's body.

•	It is customary for family members to cry openly
and loudly.

•	Parents may wish other people from outside their
community to refrain from comforting them or
having physical contact with them.

•	Families may like to listen to readings from the
Guru Granth Sahib for about 10 days after the
funeral.

Buddhism

•	Where possible, families will wish to be with their
dying child. A religious teacher may be invited to
talk to the family.

•	The child's body will remain untouched until a
priest arrives.

•	The child's body will be washed and laid out,
usually by members of the family or someone
known to them from their religious community.

•	Family members will wish to stay together if possible.

•	Families will appreciate an environment that is as
quiet as possible and conducive to prayer/
meditation.

•	A photograph of the child may be placed near the
coffin.

•	A period of between 3 and 7 days will usually
elapse before the funeral.

•	Burial or cremation will depend on the school of
Buddhism/country of origin.

•	Periods of mourning vary according to the country
of origin.

Children's hospices strive to provide unrivalled flexible
and responsive care, meeting the needs of individual
families. It takes courage, determination and very hard
work to provide a service worthy of being called
excellent. We might rightly be proud of our
achievements to date, but never complacent. Support
often means helping families to make informed choices
about their needs and enabling them to feel secure with
the decisions they make. Sometimes options are very
limited and it is important that each family is able to
express what is important, feasible and right for them so
that they are able to look back on their decisions
comfortably.

The meaning of life comes under threat of futility and
emptiness when we are confronted with a child who is
going to die. Hospice staff may appear to be detached
and measured on the surface but they are often
crumpled underneath. Cynics will argue that it is a
peripheral luxury to spend time addressing staff needs
when faced with the tragedy of a dying child. There is,
however, evidence that when stresses are ignored or
denied and the needs of professionals are unmet, the
consequences for families may be serious. We should not
forget that staff also need time and space to deal with
distressing situations so that they too may experience
the unique quality of experience found in the living
communities of children's hospices.