Katherine Pettus, Advocacy Officer, Human
Rights and Palliative Care, International Association for Hospice and
Palliative Care (IAHPC), explains how she has been working with staff of
a children’s hospice in Eastern Europe to help them advance children’s
palliative care through closer links with international human rights
bodies.
Dr Katherine Pettus
Entering the Belarusian Children’s Hospice (BCH) on the outskirts of
Minsk the visitor is welcomed into what appears to be a large
family-friendly home. A home dedicated to the highest standards of
clinical excellence and alignment with international human rights law!
Belarusian Children’s Hospice
In order to maintain its high standards as the only provider of
palliative home care to seriously ill children and their families in
Belarus, BCH has to do ongoing national and international fundraising.
Director Dr Anna Garckova, and grant writer Elena Anasimova, are
politically savvy women who asked me to help them learn more about how
to interface with international human rights treaty bodies to advance
the cause of children’s palliative care. Interestingly, their Ministry
of Foreign Affairs and Ministry of Health asked them to collaborate in
writing the Universal Periodic Reviews for Belarus that are presented to
the Human Rights Council in Geneva. As a result of one of these
reports, the concluding observations of the Committee on the Rights of
the Child to the 3rd and 4th Periodic Reports of the Republic of Belarus
cited the country for lack of political commitment and insufficient
involvement of state institutions in the provision of palliative care
for children. This then prompted the Ministry of Health to issue an
order determining general conditions for palliative care service
development in Belarus and stipulated the creation of palliative care
wards in hospitals and children’s homes.
The noticeable gap, however, was lack of funds for medical equipment
and medicines for home care and respite services. Since the majority of
children and, of course, their parents prefer children to be at home
whenever possible, BCH fundraises to fill that gap.
Some of the children who have received support from Belarusian Children’s Hospice
In partnership with UNICEF and contract staff from the Ministry, BCH
cares for at least 300 children annually, the majority of diagnoses
being congenital and neurological disorders, and about 20% cancers. The
hospice, which will soon move to new premises, has three bedrooms for
respite and acute care, as well as a teaching room for clinical
providers who come from other former Soviet republics to learn about
children’s palliative care.
To find out more…
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