Transplantation is considered the treatment of
choice for many patients suffering from diseases resulting in End Stage Organ
Failure. Its success continues to improve, creating an increase in the numbers
and types of transplants. This increased demand has put a severe strain on the
supply of organs. In India the Human Organs Transplant Act was passed in 1994,
which recognised brain death paving the way for 'cadaver' transplantation.
However, six years since the Act was passed, only a few cadaver transplants have
been performed. The problem is at multiple levels.
Health
professionals
Health professionals are uncomfortable with
declaring brain death and hesitant to explain the concept to the patient's
families. Some general practitioners, who were called in by potential donor
families, have advised against organ donation. Further, the definition of brain
death is specified only in the context of the transplant law. Doctors often
interpret this to mean that brain death should be declared only if the
deceased's organs will be donated. This linkage has created tremendous
confusion. If we are to increase cadaver transplant activity it could be made
mandatory to a) document brain death, b) request the family about organ donation
and c) document the outcome.
The medical profession has not promoted cadaver
transplants. Some nephrologists agree to transplant kidneys from unrelated
living donors instead of suggesting a cadaver kidney. Another reason for the low
donation rates could be the lack of sensitive communication skills of the doctor
when making the request for donation. It needs time to explain clearly that
death has occurred and that it is irreversible. The family needs to be given
time to come to terms with death before making the request for organ donation.
Choosing a private area to talk to the family, away from the bedside of the
patient and the general waiting area also helps.
Society
Families are exposed to the idea of organ donation
for the first time when a loved one is declared brain dead. It therefore becomes
more difficult to give consent for organ donation. Awareness about organ
donation should start early in schools and colleges. The media should spread the
message by highlighting actual cases, thereby building confidence and helping in
overcoming misconceptions in society like religion is against donation, or that
organs are allocated with bias to class, religion, etc. In our social system the
extended family is often involved in important decisions, and may overrule the
immediate family's agreement to donation. Some relative have asked for monetary
compensation or waiving of hospital charges as a condition to the donation. From
a purely utilitarian point of view this position cannot be totally rejected, but
it must be remembered that the introduction of commercial considerations into a
system built on altruism and solidarity could have a dissuasive effect and
paradoxically produce a reduction in donations. The problem of getting consent
to donation is further compounded as public confidence in transplantation has
been harmed by the 'kidney rackets' that were prevalent in our
country.
The time involved in the process of organ donation
also becomes a deterrent, especially, in medico- legal cases. The case has to be
reported to the nearest police station and after removal of organs taken for a
post mortem. It would help if post mortems can be avoided in cases where the
cause of death is not controversial, or done on a priority basis or in the
hospital in which the organs are harvested.
It is important to note that donors' relatives have
been grateful for the opportunity to donate their loved one's organs. Those not
given the opportunity have regretted that their loss was not mitigated by
something good out of the tragedy. Everyone in this position should receive
comprehensible information to make an informed decision.
Patients
Patients who require transplantation treatment also
have reservations. Many are unaware of the option of transplantation. Renal
failure patients are looking for a living donor and are unaware about the
availability of cadaver kidneys. The cost of surgery and post transplant drugs
that have to be taken lifelong is very high. Government involvement in reducing
cost of drugs and early enrollment to health insurance schemes can help to make
this treatment accessible to a greater number. There have been very few cadaver
transplants. So patients fear being the 'guinea pigs' and are hesitant to
register. They 'shop' for advice, resort to alternative therapies and in the
bargain lose vital time, money and sometimes even their life. The unfortunate
scenario has been that even in the rare cases when donor organs have been
available there have been no recipients. For example a liver was removed from a
donor in Mumbai and sent to Delhi for lack of a recipient when thousands of
patients are dying of liver disease. Some of these problems can be overcome by a
central body with a transparent protocol for putting patients on the waiting
list and distributing organs. This body will require support at many levels -
from doctors who identify donors and those who transplant organs, from families
who donate organs and from patients waiting for organs. It will work only if
people know that it is impartial and in society's interest.
Harsha Deshmukh, Narmada Kidney Foundation, Twin
Towers, Prabhadevi, Mumbai 400025. Email:
sdeshmukh@vsnl.com
