Page 0123

I

t has been estimated that in the developing world at least

160,000 children are diagnosed with cancer every year.2

Sadly, very few of them will receive adequate pain relief

and palliative care at any time in the course of their disease.

In India, the overall incidence of paediatric cancer per year is

38 to 124 per million children under 15 years of age.3 As in

other low-income countries, late diagnosis and lack of

resources means that, depending on the area in which they

live, anything from 17-72% of these children will die as a

result of their cancer.4 This can be put in perspective when

compared with the United States and United Kingdom where

only 20-24% of children with cancer will die.5,6 But, whether or

not they are eventually cured, young patients often find the

painful procedures they have to undergo the hardest part of

their disease to bear7

, and the stress this causes can also

negatively influence their chances of survival. It is very

upsetting for families to watch their children suffering and

they feel powerless to help them. Yet there are few paediatric

palliative care units in India, or culturally appropriate tools and

guidelines for best clinical practice to assess and prevent

children's pain.

Paediatric palliative care

Paediatric palliative care has been defined as a sub-specialty

that focuses on achieving the best possible quality of life for

children and their families living with life-threatening or

terminal conditions like HIV, AIDS and cancer. It deals with the

control of pain and other symptoms, and addresses the related

psychological, social and spiritual problems.8

It is vital that all medical facilities caring for children develop

paediatric palliative care programmes, along with rural and

urban outreach services, and strategies to raise public

awareness. As for adults, palliative care for children is

practised using an integrated, interdisciplinary approach (see

Figure 1). There should be good continuity of care, including

availability of expert nursing and physician help at all times,

and a team to help with the psychosocial and spiritual needs of

the family. Moreover, doctors and nurses working in oncology

should become acquainted with palliative attitudes,

techniques and knowledge.

An overly rigid separation between curative and palliative

care can lead to problems. As mentioned earlier, children who

will likely be cured benefit from pain relief measures just as

much as children and families facing deterioration and death.

Unfortunately, palliative care is often not offered to them

because it is wrongly assumed to be only needed during the

terminal period. In summary, using a broader "scope of care",

all children living with a life-threatening condition could

benefit from palliative management.

For these reasons, the World Health Organization in its

description of paediatric palliative care states: "Palliative care

begins when an illness is diagnosed, and continues

irrespective of whether or not a child receives diseasedirected treatment".9

Similarly, the American Academy of

Pediatrics recommends an integrated model of palliative care

"in which the components of palliative care are offered at

diagnosis and continued throughout the course of illness,

whether the outcome ends in cure or death".10

The paediatric palliative care programme in

Hyderabad

The Mehdi Nawaj Jung Institute of Oncology (MNJ) is a 300-

bed tertiary care hospital in the state of Andhra Pradesh in

India. Every year the hospital cares for around 1,000 children

with cancer. Most of the children require intensive curative

treatment over a lengthy period. Painful procedures, diseaseINTEGRATING

PALLIATIVE CARE

INTO A CHILDREN'S ONCOLOGY

SERVICE IN INDIA

GAYATRI PALAT (LEFT), PAX PROGRAM DIRECTOR, INDIA, TWO WORLDS CANCER

COLLABORATION, INCTR CANADA AND STUART BROWN (RIGHT), PAX DIRECTOR, TWO WORLDS

CANCER COLLABORATION, INCTR CANADA

Provision of palliative care is being recognized increasingly as a human rights issue.1 Nevertheless,

it is not available for many people with cancer and other serious diseases. This is particularly so for

vulnerable groups, including children in resource-poor countries.

PALLIATIVE CARE

122 CANCER CONTROL 2014

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