Sedation at end of life
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The intentional induction and maintenance of controlled sedation
for the purpose of relieving profound, refractory symptoms
including agitation and delirium, in children who are near the end
When an experienced clinician has assessed that the child's symptoms are refractory, that their disease is irreversible and advanced, and death is expected within hours to days. Advice from specialists in paediatric palliative care is strongly recommended
Whilst most children will follow a path of increasing drowsiness, fluctuating consciousness, and a comatose state before death, there will be a small number who have a more distressing journey characterized by restlessness, agitation, confusion and delirium. This can be extremely distressing to the family and staff involved. These symptoms may be mistaken for pain and, when increasing the pain medication does not resolve the situation, it leaves everyone feeling more distressed and helpless.
There is often concern expressed by families and staff that by giving sedation to a child at the end of life it will somehow hasten their death. The intention of sedation at this stage is to relieve the agitation being experienced. Appropriate sedation does not hasten death.
There needs to be good communication with the child/young person's family/whanau prior to starting terminal sedation
Terminal agitation, terminal restlessness and terminal delirium are all used to describe this state of confusion, restlessness and agitation that can present at the end of life. It may be due to increasing hypoxia, organ failure with resultant deranged metabolism, and/or pain, fear and anxiety
Follow the steps below to manage a terminally ill child who is experiencing severe agitation.
- Assess the child.
- Address any symptoms that may be increasing their agitation such as pain relief, managing thirst, access to bedpans, urinals and so on. Take appropriate actions to reduce these symptoms.
- General environmental measures aimed at reducing anxiety and disorientation should be employed, such as maintaining a familiar environment (child's own clothes, belongings, presence of family members) consistency of staff and reducing the level of noise.
- Discuss situation with primary consultant and/or paediatric palliative care team.
- Discuss plan with the family, eliciting any concerns they have around sedation. Ensure they understand the irreversibility of the situation and the reasons for giving sedation.
Midazolam is considered the first line benzodiazepine due to its short half-life and ability,therefore, to be titrated easily. It can be given via IV, subcut, buccal or intranasal route. Senior doctor should prescribe.
A longer acting benzodiazepine may be required
With specialist advice other useful medications may be required
Document actions and effect of sedation.
Contact paediatric palliative care team if further support is required.
Information for Families
See relevant kidshealth factsheets on Palliative Care
De Graeff, A., & Dean, M. (2007). Palliative sedation therapy in the last weeks of life: a literature review and recommendations for standards. Journal of palliative medicine, 10(1), 67-85.
Doyle, D., Hanks, G., & MacDonald, N. (Eds.). (1998). Oxford Textbook of Palliative Medicine (Second ed.). Oxford: Oxford University Press.
Faisinger, R. L., M, T., & E, B. (1993). A perspective on the management of delirium in terminally ill patients on a palliative care unit. Journal of palliative care, 9, 4-8.
Goldman, A. (Ed.). (1994). Care of the Dying Child. Oxford: Oxford University Press.
Goldman, A., Hain, R., & Liben, S. (Eds.). (2006). Oxford Textbook of Palliative Care for Children. New York: Oxford University Press.
Irving, H., Liebke, K., Lockwood, L., Noyes, M., Pfingst, D., & Rogers, T. (1999). A practical guide to paediatric oncology palliative care. Brisbane: Royal Children's Hospital Brisbane.
McCulloch, R., & Hammel, J. F. (2006). Depression, anxiety, anger and delirium. In A. Goldman, R. Hain & S. Liben (Eds.), Oxford Textbook of Palliative Care for Children. Oxford: Oxford University Press.
Shuster, J. L. (1998). Delirium, confusion and agitation at the end of life. Journal of palliative medicine, 1, 177-186.
Zaw-tun, N., & Bruera, E. (1992). Active metabolites of morphine. Journal of palliative care, 8, 48-50
Did you find this information helpful?
- Date last published: 01 July 2010
- Document type: Clinical Guideline
- Services responsible: Paediatric Palliative Care
- Author(s): Janet Mikkelsen
- Editor: Greg Williams
- Review frequency: 2 years
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