UN report highlights palliative care for children as a right

Advance directive

In a recent report from Dainius Puras, the United Nations (UN) Special Rapporteur on the right to everyone to the enjoyment of the highest attainable standard of physical and mental health, palliative care for children is highlighted as a child’s right and one the interventions that should be made available across the continuum of care, citing it to be ‘an obligatory part of health-care services’. The focus of the report is on the right to health and its relationship to the right of the young child to survival and development and the Special Rapporteur makes several references to paediatric palliative care.

Special Rapporteur
A Special Rapporteur is an independent expert appointed by the Human Rights Council to examine and report back on a country situation or a specific human rights theme. The position is honorary and the expert is not a staff of the United Nations nor paid for his/her work. Views are expressed in an independent capacity and do not represent their Government.The Human Rights Council has mandated experts to study particular human rights issues.

The summary of the report calls for child mortality to remain a global priority and states that more than just survival, children have the right to thrive, to develop in a holistic way to their full potential and to enjoy good physical and mental health. It also validates that early childhood is a crucial time in childhood which should receive “significantly more attention and a more adequate response from all relevant actors…”

Section IV, A of the report, labelled Health-care and other health-related services essential for early childhood development includes the following paragraphs:

48. A strong health system that is based on such human rights principles as equality and non-discrimination, accountability and participation and that affords access to services for children and caregivers is at the heart of the right to health. The right to health gives rise to obligations on the States to ensure the provision of necessary medical assistance and health care to all children, with emphasis on the development of primary health care. This includes prevention, promotion, treatment, rehabilitation and palliative care services.

49. Child-friendly health services, goods and facilities must be available in adequate numbers; geographically and financially accessible as well as accessible on the basis of non-discrimination; culturally acceptable; and of high quality.

51. Children affected by congenital anomalies or malnutrition, chronic illnesses or severe and life-limiting diseases should be referred to specialized paediatric palliative care services, which can be provided in tertiary care facilities, in community health centres and in children’s homes.

52. Palliative care for young children is an obligatory part of health-care services, beginning when the illness is diagnosed and continuing regardless of whether or not a child receives curative treatment. Young children in need of palliative care have the right to receive the necessary physical, social, psychosocial and spiritual care to ensure their development and promote their best possible quality of life. Symptom management and pain relief are central to children’s palliative care. Health systems must have adequately trained professionals to assess and treat pain in children of different ages and developmental stages and ensure the availability of paediatric formulations. Palliative care for children must also involve ongoing support to the child’s family throughout the course of treatment and, should the disease be the cause of death, into bereavement.

Joan Marston, ICPCN Chief Executive, had this to say about the report: “This report from the UN Special Rapporteur on issues related to childhood development and health is an excellent document that we can and will use in our future international advocacy work. The ICPCN has always declared palliative care for children to be a human right and it is a wonderful validation to see that it is also accepted as such by the Special Rapporteur to the United Nations.” She went on to say that the ICPCN was thrilled that the need for trained professionals to assess and treat pain and the availability of pain medication in paediatric formulations was included in the report.

Click here to access the full report.

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