The role of specialist services in supporting families during end of life

care

Obstacles to supporting parents in EoLC

• Sensitive and emotive

• Professionalisation of EoLC process

• Prioritising other aspects of EoLC

• Parents contribution overlooked?

• Lack of research

Seven C’s (GSF)

1. Communication2. Co-ordination of Care3. Control of symptoms4. Continuity5. Continued Learning 6. Carer and relative support7. Care of the dying

(www.goldstandards.nhs.uk)

Caroline

Danny, Lillian & Caroline

Key Themes

• Extended parenting role

• Degenerative illness

• Complimentary Care

• Different perspectives

The impact of losing an adult child

“To bury one of our children is a tragedy few of us can envision, no matter how well schooled in the grief process we may be. What happens to parents who have raised their child only to lose

one in his or her adult life?”

http://www.havenofnova.org/articles/parents_in_grief/adult_child.pdf

The impact of losing an adult child

“When thechild died, the parents lost the very essence of

what gave meaning to their lives.”

http://www.havenofnova.org/articles/parents_in_grief/adult_child.pdf

History

• Normal childhood

• Sub Acute Sclerosing Panencephalitis

• Co-dependency

• Move to Heatherstones

Care Planning

• Advance Care Plan Meeting

• 7 C’s

• Sharing information

• End of Life Care Pathways

Supporting the family

• Listening

• Working in partnership

• Respecting feelings, opinions

• Creating opportunities

Summary

• Giving equal emphasis to care / relative support in EoLC

• Working in partnership• Family support• After Care• Interpersonal skills• Continued learning• Further research

After Care