I have been in India for almost six months volunteering my expertise on organ donation and deceased donor transplantation and have come to the conclusion that doctors are the most powerful impediment to India's acceptance of organ donation. I say this for three reasons: 1) Indian neurosurgeons and neurologists have remained reluctant to declare brain death: the absolute requirement for proceeding with even discussing organ donation. 2) the myth that Indians do not accept organ donation because of religious or cultural objections is just that: a myth, and 3) although THOA (the Transplant of Human Organs Act) was passed in India way back in 1994, most kidney transplant surgeons and liver transplant surgeons running high volume living donor transplant centres to this day have refused to even begin performing deceased donor transplants.
Non-transplant physicians, especially those who would be responsible for declaring brain death such as neurosurgeons, neurologists and critical care doctors, have good reason to be distrustful of the current transplant enterprise in India. Gone are the days of the horrific organ trafficking in the 1980s and 1990s that marred India's medical reputation and led to international outcry and ultimate passing of THOA, but this activity continues to exist. Any living donor transplant requires Government approval, but with the corruption that is pervasive throughout India in general and within the medical profession in particular, forged documents can go unchecked and a "grey market" in human organs can (and does) continue.
So such physicians, rightly so, fear for their professional reputations not only because of possible association with an unethical system but also because they (and their hospital administrators) don't want to be seen as declaring brain death for the sake of organ donation rather than trying to save their patients. By law, brain death must be declared before consideration of organ donation can proceed. These doctors represent the first hard stop in the organ donation process and, all too often, it is the final stop.
Another issue is that non-transplant physicians have not been educated and sensitised properly about brain death and organ donation. Brain death declaration involves a very straightforward clinical exam that is performed at the bedside followed by a confirmatory "apnea test" to determine if the patients is able to breathe without mechanical ventilatory support. Explaining brain death to a lay person, especially at the time of extreme emotional duress because of an unexpected tragic loss, requires great skill and compassion. All doctors and medical professionals should also understand that organ donation is all about saving lives, despite a single loss of life. If a single death can be transformed into many lives saved through organ donation (up to 8 or 9) and many lives vastly improved through tissue donation (more than 50), then this should be seen as a victory.
Many advocates of organ donation in India are willing to provide this professional education, but each specialty really needs to hear it from one of their own. We need to identify champions in the fields of neurosurgery, neurology and critical care who understand the importance of organ donation and who can articulate this to their colleagues (alas, they don't trust us transplant folk!). As for the trust issue with transplant, this will take some time. The hope is that by increasing the number of organ donations and deceased donor transplants, hundreds of thousands of lives can be saved and by ensuring transparent and fair organ allocation, the doctors and public will begin to trust the system.
There is very strong empirical evidence that Indian religious beliefs and cultural attitudes are NOT impediments to organ donation. In Tamil Nadu, the MOHAN Foundation reports a 65% success rate in obtaining consent for organ donation (Sunil Shroff, personal communication). Counterarguments that Southern India is more educated are fallacious, given my personal experience. Here in Rajasthan alone, I have been asked to consult on five cases over the past two months where families were interested in organ donation, but we as of yet do not have the capability to honor these amazingly kind requests. Such cases are happening all over India. The Hindu notion of "Daan"--helping others as a good karmic deed--predominates over concerns for bodily integrity at the time of cremation. This belief is shared by Sikhs, Jains and most Buddhists. Also, those who believe in reincarnation can easily accept the idea of "literal reincarnation" that transplant is.
Many Indians, when presented with appropriate education, accept organ donation as a kind and noble gesture. Indian youth are particularly receptive to the cause of organ donation, so perhaps we are only a generation away from widespread acceptance of organ donation in India, given the right message(s), the right effort and the right investment.
The most shocking realization for me has been that the transplant surgeons in India themselves seem to be the most serious impediment to organ donation acceptance. I cannot blame highly educated, highly skilled and highly intelligent surgeons for being very comfortable with the current status quo, but organ donation and deceased donor transplantation should not be feared by them. A cynic would say that living donor transplant surgeons are too busy making money, so why should they take on more work doing deceased donor transplants? Or if there is an ample supply of living donors (legal or otherwise), why waste time with deceased donors?
Of course it is more complicated than this. We are talking about peoples' livelihoods. Why rock the boat? Why engage in a new practice that might diminish the current practice?
My answer to these concerns is that there will always be a role for living donor transplant. In fact, living donor transplant is preferred and should be recommended over deceased donor transplant because of the documented superior outcomes (despite the higher morbidity rates and risk of donor death in the case of living liver donor transplant). No one is here to cut into your business. We're talk about making the pie (much) bigger. We're talking about giving people a chance if they don't have a live donor or they can't afford a corporate hospital. We're talking about a doctor's moral obligation to help save the lives of their patients.
Moving forward, India needs more medical professional education on organ donation and brain death declaration, more formal training opportunities to expand the pool of transplant experts (particularly transplant surgeons), transparent and accountable allocation systems to fairly share available organs and to build public trust, and a parallel and collaborative growth of deceased donor and living donor transplant activity. These are all achievable but will take many good hearted doctors to look beyond their self interests and unfounded fears to realize the greater good of organ donation for Indian society.