Saturday 11 October 2014 is World Hospice and Palliative Care Day, a unified day of action to celebrate and support hospice and palliative care around the world.
This year’s theme is: Achieving universal coverage of palliative care: Who Cares? We do!
World Hospice and Palliative Care Day aims to:
- share the vision to increase the availability of hospice and palliative care throughout the world by creating opportunities to speak out about the issues
- raise awareness and understanding of the needs – medical, social, practical, spiritual – of people living with a life limiting illness and their families
- raise funds to support and develop hospice and palliative care services around the world
You can find out more about World Hospice and Palliative Care Day and download helpful materials by visiting their website at www.worldday.org
On this day AND throughout the month of October, the ICPCN would like to raise awareness of issues related to Children’s Hospice and Palliative Care.
Who cares for children with palliative care needs?
Children’s palliative care differs significantly to palliative care for adults due to a number of factors, including:
- The time span of a childhood condition can extend over a number of years which may require the patient to transition from child centred to adult palliative care services at some stage
- Children’s palliative care embraces the whole family. Family members, especially parents and siblings, will be vulnerable as they face the changes in life that the child’s diagnosis creates, and as they anticipate bereavement.
- Children’s palliative care providers need to be aware of the continuing physical, emotional and cognitive development throughout childhood and respond to each child’s changing levels of communication and their ability to understand.
- Provision of education and play when a child is seriously ill is essential. This introduces an additional dimension which adds to the complexity of care provision.
Due to the holistic nature of children’s palliative care it is ideally provided by a multi-disciplinary or inter-disciplinary team of professionals and other people who have received appropriate training in the field. The members on a children’s palliative care team will vary according to the needs of the child and family as well as the available resources of the organisation. Members of this team can include but is not restricted to paediatricians, doctors, nurses, psychologists, social workers, counsellors, teachers, dieticians, physiotherapists, occupational therapists, child life specialists, play therapists, spiritual leaders, music and art therapists. Where resources allow, families are sometimes assigned a ‘key worker’ who ensures a coordinated and timely response by team members to the needs of the child and the child’s family.
In her article “Team Networking in Palliative Care” in the Indian Journal of Palliative Care Odette Spruyt writes, “The delivery of palliative care involves many dimensions of care. Physical symptoms need to be addressed through expert assessment, diagnosis and pharmacological and non-pharmacological strategies. Likewise, psychosocial distress is relieved by similar careful assessment and delivery of care to the patient and their carers, care which may include financial assistance, practical aids, counseling, targeted care of children and ongoing emotional support. Such wide-ranging care is ideally delivered by a multidisciplinary team.”
She goes on to describe the multidisciplinary team as a “dedicated palliative care team consisting of specialist palliative care medical and nursing staff, social worker, physiotherapist, pastoral carer, volunteers, and others.”
It may also be a “virtual team” which forms around the patient and carer with palliative care needs. A virtual team may consist of the general practitioner, primary specialist, palliative care specialist nurse or doctor, community nurse, local pharmacist, medical practice social worker, school support staff, and perhaps a spiritual carer with whom the patient has a long-standing relationship.”
Communication and coordination are critical to the success of the team in reducing any stress, fear, exhaustion and anxiety experienced by the child and the family.
You are invited to download a copy of the poster below to use to raise awareness in your part of the world of the work of various members of the children’s palliative care multi-disciplinary team.
# Hats on for children’s hospice care – Social Media Campaign
Read about our #Hatsonforchildren’shospicecare campaign here