all patients and every effort is made to keep each child
completely pain free. This includes procedural pain, which
is routinely managed using procedure-related pain relief
protocols. Examples of these would include:
- non-pharmacological approaches such as simple
explanation of procedures to the child and the parents,
parental involvement during procedures and
- EMLA cream at the site of injection for every child
undergoing diagnostic or therapeutic procedures;
- conscious sedation with medications such as midazolam
during procedures such as bone marrow aspirations;
- general anaesthesia with the help of anaesthesiologists
in selected situations.
‰ Training for all oncology staff in the basics of pain
management and palliative care so that pain and distress
is recognized, recorded and addressed at the earliest
‰ Ready availability of the commonly used opiods (oral and
parenteral morphine, and parenteral and transdermal
fentanyl) for both inpatients and outpatients.
‰ Maintenance of continuity of care by offering home-based
care for patients living in the city of Hyderabad and phone
support for those living further away.
‰ Financial support if needed for transportation, food,
medicines, health care of siblings and schooling.
‰ Inpatient and hospice care provided for those children
with difficult symptoms, psychosocial issues or needing
end-of-life or respite care.
‰ A "round the clock" phone helpline for families
after their child is discharged.
‰ When necessary, a smooth transition to advanced
palliative and end-of-life care.
Since the paediatric programme was established:
‰ the number of children treated has increased
dramatically (see Figure 2);
‰ the total opioid consumption, which is an indicator
of the effectiveness of a pain relief programme, has
increased from 93 grams of oral morphine
equivalent in 2010 to 284 grams in 2012.
‰ there has been a reduction in loss to follow-up and
abandonment of treatment improving patients' chances of
survival. This is a major public health issue in developing
Training in paediatric palliative care
The basic and one-month palliative care training programmes
at MNJ are among the few to include a module on paediatric
CANCER CONTROL 2014 123
Figure 1: Integrated palliative care
related symptoms and the emotional trauma of facing a
potentially life-threatening illness all cause enormous
suffering. Many children develop severe anxiety, depression,
become withdrawn and have difficulty communicating.
Families and patients often have to travel long distances and
then stay in the hospital for weeks, meaning they are deprived
of their extended family and community support when it is
Very early in the development of the paediatric oncology
programme, we realized the dire necessity for an effective
palliative care programme for children suffering from cancer
and their families aimed at optimizing their physical,
psychosocial and spiritual well-being.
The MNJ Pain and Palliative Care Programme, which is a
collaboration between MNJ, the International Network for
Cancer Treatment and Research (INCTR) and its Canadian
branch (Two Worlds Cancer Collaboration Foundation) along
with Pallium India, has been caring for adults since 2005.
Active advocacy by the team has resulted in the inclusion of
palliative care in the state-sponsored health insurance scheme
for people who are poor. Generally the programme has been
strongly supported by the Government of Andhra Pradesh as
well as the leadership of MNJ.
A distinct paediatric palliative care service was created in
2007. The main features of the programme are as follows:
‰ Free treatment for all children.
‰ A dedicated team of physicians, nurses and social workers
trained in paediatric palliative care.
‰ Simultaneous enrolment into the palliative programme for
every child coming for treatment at the oncology
department. Initial support includes pain and other
symptom management, relationship building and
psychosocial help for the child and family in coping with
‰ Regular weekly support group meetings, and recreational
and educational activities on cancer hygiene and the
importance of treatment completion.
‰ Zero tolerance to pain. Screening for pain is carried out on