Place of
care
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.
Hospice
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 provided.
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 Cottagein Sydney also offers a hospice environment to children with a range of conditions.
Hospital
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 going home.
Home
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;
- Familiar environment where routines are not dictated by the hospital and there are fewer disruptions
- Freedom to have extended family and friends nearby
- More opportunity to attend to the needs of siblings and involve them in the care of the sick child
- Privacy
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 Program.
(LINK TO PCV)
References
- Vickers JL, Carlisle C. Choices and control: parental experiences in pediatric terminal home care. J Paed Onc Nurs 2000;17: 12-21.
- Sirkia K, Saarinen UM, Ahlgren B, Hovi L. Terminal care of the child with cancer at home. Acta Paediatr 1997; 86: 1125-30.
- Sirkia K, Hovi L, Pouttu J, Saarinen-Pihkala UM. Pain medication during terminal care of children with cancer. J Pain Symptom Manage 1998;15: 220-226.
- Darbyshire P, Haller A, Fleming s. The Interstellar cold: parent's experiences of their child's palliative care. A report prepared for the South Australian Health Commission. 1997.
- Collins JJ, Stevens MM, Cousens P. Home care for the dying child. Australian Family Physician 1998; 27: 610-614.
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