In this section
Most families wish to spend as much time as possible at home but
may need hospital/hospice admission for symptom control or respite.
Families will often move between home and hospital and in some
cases hospice. The transition from one place of care to another
should be as straightforward as possible and this can be achieved
through careful planning and effective communication between
hospital and community-based care providers. At the Royal
Children's Hospital in Melbourne, clinical pathways are available
to help staff with this task.
Paediatric hospices have become well established in the United
Kingdom, where they have been used predominantly by families with
children with neuro-degenerative conditions for respite care. A
homely environment is provided where parents may stay and
participate in the care of their child if that is their wish. Many
families take the opportunity to rest and attend to the needs of
their other children. In this way, parents are better able to
maintain the strength and skills required to care for their child.
Staff are flexible in their approach so as to accommodate the
individual needs of each family. Bereavement care is generally
Hospice facilities for children are becoming increasingly
available in Australia. In Melbourne, Very Special Kids
Inc. operates a children's hospice in Malvern and also provides
family support through a team of professional and volunteer staff.
Further information may be obtained by phoning (03) 9804 6222 or
visiting the website. Bear Cottage
in Sydney also offers a hospice environment to children with a
range of conditions.
The hospital environment can presents certain difficulties for
staff and families caring for dying children. Emergency admission
procedures may be slow and frustrating, but can be facilitated by a
letter or care plan carried by the family, appropriate
documentation in the child's unit record, and the availability of a
staff member familiar with the child's condition. An "Alert"
system in the Emergency Department at the RCH provides rapid
notification and guidance for emergency department staff when the
child arrives at the hospital.
Families may find it difficult to achieve privacy and
accommodate friends and relatives in a hospital setting. Attention
to these and other details can help families a great deal.
Parents usually choose hospital care for their child because
they feel unable to deliver the care required at home, or are
anxious about symptom control and terminal events. Supporting
parents and encouraging their involvement in the care of the child
on the ward will often, over time, increase their confidence in
Most families (up to 80%) wish to care for their child at home
as much as possible. ﾮ 1,2 With appropriate planning, expertise and
support most symptoms including pain, dyspnoea and seizures can be
effectively managed at home. ﾮ3 There are obvious benefits to being
at home including;
Parents generally describe the overall experience of caring for
their sick child as a positive one.ﾮ 1,2 However, caring for a
child at home is an enormous task and presents a number of
difficulties. Parents cite exhaustion, difficulty reconciling their
dual roles as parents and 'nurses', and financial burden as
barriers to their ability to carry out this task ﾮ4,5. There may be
anxiety over symptom control and terminal events and some families
may wish to return to the hospital close to the time of death. This
should not be seen as a failure of home care and families should be
supported in whatever decision they make.
Support in the child's community is available from the family
doctor and community palliative care services. The latter are
regionalised and the level and type of service provision varies
according to the agency involved. Most will provide nursing and
psychosocial support. Some have access to medical consultants in
palliative medicine. Others also provide complementary therapies
such as music therapy and massage. Health professionals working in
palliative care services possess valuable skills in symptom control
and family support through illness and bereavement. They may not
have had the opportunity to work with many children and may need
the support of paediatric health professionals. Encouraging and
facilitating strong links between these two groups is one of the
key roles of the Victorian Paediatric Palliative Care
(LINK TO PCV)