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Pediatric palliative care (PPC) is a specialized
comprehensive care approach for children living with
life-limiting and life-threatening illness. The focus is
providing relief from the symptoms and the stress of the
illness. The goal is to improve quality of life for both
child and the family. The specially trained team which
consists of a doctor, nurse, counsellor and sometimes,
depending on resources, physiotherapist, play/music
therapist, religious person, work together with other
doctors of the child as an extra layer of support.
Palliative care is appropriate at any age and at any stage
of illness and it can be provided along with curative
treatment or as standalone.
The American Academy of
Pediatrics states that “the components of palliative care
are offered at diagnosis and continued throughout the course
of illness, whether the outcome ends in cure or death” [1].
Access to palliative care is being considered a human right
[2] and most pediatric hospitals in developed countries are
working towards integrating the program to demonstrate
better standards of care.
The palliative goals of
care depending on the diagnosis and condition of the child
can vary from supportive care during curative treatment to
symptomatic management and end of life care. Children with
these chronic illnesses might experience multiple crises
requiring intensive care which are stressful to them and
their families. The palliative care team provides additional
support during emergencies and health crises, while also
helping to address the challenges of daily living.
Therefore, an integrated palliative care program ideally
consists of out-patient, in-patient, hospice and home care
to maintain continuum of services. However, there are many
successful PPC models across the world which have a
different combination of these services.
A study
published in 2017 estimated the global need for PPC to be
21.6 million, with 8.2 million children needing access to
specialist palliative care service provision [3]. In India,
these authors estimate that there are 1.6 million children
in need of specialized pediatric palliative care [3].
Presently, there are very few trained PPC specialist doctors
in India, which is both due to the lack of awareness about
the existence of such a specialty, and limited provisions
for training in this specialty. As some centers are now
providing training in this speciality, we feel that more
young pediatricians need to take-up this specialty by
utilizing available training facilities, so that the quality
of life of children with life-threatening conditions can be
improved.
References
1.
American Academy of Pediatrics. Committee on Bioethics and
Committee on Hospital Care. Palliative Care for Children.
Pediatrics. 2000;106:351-7.
2. Brennan F. Palliative
care as an international human right. J Pain Symptom Manage.
2007;33:494-9.
3. Connor SR, Downing J, Marston J.
Estimating the global need for palliative care for children:
A cross-sectional analysis. J Pain Symptom Manage.
2017;53:171-7.
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