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Jul-Sep2002-10(3)
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Cancer: the right to life
Harmala
Gupta
On Nov. 25, 2000, 12 cancer support
groups from around the country joined hands to release the Declaration of Rights
for People with Cancer in India.
Such rights have now become law in many
countries of the developed world. The Declaration of Rights released on that
day, at the first All India Cancer Support Groups' Conference, was adapted from
the Declaration of Rights drawn up by Cancer Link, United Kingdom.
The rights include basic human rights
which are often violated once a person is diagnosed with cancer. These are: the
right to receive equal concern and attention whatever one's gender, caste,
socio-economic status or religious belief; the right to be treated with respect
and dignity and to have all needs - physical, social and psychological -
responded to, whatever the prognosis; the right to be told that one has cancer
in a sensitive manner and to share in all decision making thereafter; the right
to be fully informed about treatment options including the benefits and risks
involved; the right to be asked for one's informed consent before being entered
into a clinical trial; the right to refuse treatment, to ask for a second
opinion or to use complementary therapies.
One too often hears of cases where
information, including the diagnosis, is withheld from the person with cancer on
the plea that he or she will be unable to handle it. This is by and large a
specious argument as studies conducted all over the world show that most people
would like to know where they stand. There is a need to train our medical
students to break bad news which is both an art and a science. What you say is
as important as how you say it and when you say it.
Also, assumptions are made about people
based on stereotypes. This is reinforced by the fact that those who administer
medical and nursing care in super speciality hospitals in our urban centres come
from a particular background. As a result, villagers are often denied details
about their illness as illiteracy is equated with the inability to understand.
Conversely, it is automatically assumed
that an educated and well dressed person knows all that needs to be known. Add
to this the paternalistic model of our medical system where the patient comes as
humble supplicant to the great and wise doctor. Those who have the temerity to
ask for a second opinion on a matter that concerns their life are literally
shown the door. "Don't bother to come back to me," is a familiar
response.
The next set of rights set out in the
declaration are of a more practical but equally important nature, especially in
our context. They concern the right to continue to receive quality care
irrespective of the ability to afford it; the right to have one's special
welfare needs acknowledged, which include claims arising out of physical
disability; the right to be considered for medical and life insurance; and the
right to employment without discrimination .
The sad fact is that for many in this
country cancer is simply a death sentence. They cannot afford the expensive
treatments and drugs prescribed, as well as the costs involved in residing for
long periods of time in a big city. On the other hand, it is a tragedy that
private practitioners continue to prescribe prohibitively expensive treatments
and drugs even when they know that the disease has reached a terminal stage. The
desperation of the members of the family coupled with the inability of doctors
to acknowledge their limits result in many people dying grotesque deaths.
This is despite the emergence of a
specialised branch of medicine known as palliative care which is being used very
effectively around the world to ensure that people with illnesses such as cancer
continue to enjoy a good quality of life right till the end. In India, not only
is palliative care not taught in the medical curriculum, but oral morphine, the
cornerstone of the WHO's pain control ladder, is out of the reach of most cancer
patients in India. There are only a few hospitals, again located in the cities,
who have a license to dispense it.
With more and more children surviving
cancer today it is time for all of us to join hands and lobby our policy makers
to ensure that the rights of people with cancer are not lost sight of as HIV and
AIDS capture the popular imagination. With cancer poised to engulf the
developing world, supporting such an effort is akin to investing in your
future.
Asian Age January 23,
2001