Children’s Palliative Care is a basic human right

Categories: Opinion.

The ICPCN declaration of Cape Town states:  We believe that all children with life-threatening and life limiting conditions have the right to quality palliative care provided by trained health care practitioners. Holistic family-centred children’s palliative care encompasses individualised assessment, pain and symptom management, psychosocial, spiritual and bereavement support.

In a submission to the UN Committee on the rights of the child, Joan Marston writes:

The ICPCN believes that babies, children and young people with life-threatening, life-limiting /shortening and chronic diseases or conditions have the right to receive palliative care for the relief of their suffering and enhancement of quality of life. For the provision of palliative care, countries would need to put the following in place:

  • relevant policies
  • education specifically for children’s palliative care especially within undergraduate training of health care workers
  • systems to provide care at primary, secondary and tertiary levels
  • equitable access to pain-relieving and other palliative medicines, including opioids

The submission ends with the following request:

The ICPCN therefore urges the Committee to include palliative care for babies, children and young people within their general comment.
In Section vii.7 (on chronic diseases)

  • A paragraph that acknowledges that babies, children and young people with chronic diseases require palliative care to relieve pain, distressing symptoms and suffering, and improve quality of life. This care should address the physical, spiritual, emotional, social and developmental needs of the child; and that palliative care should be part of the continuum of care for these children, available from diagnosis of any life-threatening or life-limiting condition. This will ensure that no child suffers unnecessarily.
  • Parents, siblings and families should be included in palliative care as the child and family is the focus of care
  • A paragraph that acknowledges that despite curative treatment many children will die due to late presentation, incurable conditions and treatment failure. These children require palliative care from time of diagnosis, through end-of life and the dying period;; and that such care should be provided by those trained in palliative care for children.
  • Palliative care for children should include bereavement care and support
  • Palliative care for children, including pain management, should be included in the undergraduate training of all health care professionals

In section 1v (on normative content)

  • The essential medicines for children, including opioids and other pain-relieving medications, be available in paediatric formulations and be controlled under international or national law.



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