Synopsis of Report –“A Study of the Deceased Organ Donation Environment in Delhi/NCR”

The report was commissioned in September 2013 by the Parashar Foundation, an NGO based in Delhi in partnership with the MOHAN Foundation, and the survey was carried out by research agency Outline India. The objective of the report was, to understand the deceased organ donation and transplant environment in Delhi – facts, trends, processes, opportunities and challenges; conduct extensive research around historical developments, efforts made and lessons learnt; understand global systems and success stories in the field; and come up with recommendations for action plan/future strategy for growth and effectiveness in Delhi/NCR and India.

A team of researchers from Outline India contacted Senior Medical Officers/Doctors/Transplant Coordinators at 24 of the top hospitals/research centers in the Delhi/NCR region to gather information about the latest organ transplantation system in India of which 16 responded (In two cases, 2 interviews were conducted at two branches of the same group of hospitals, amounting to a total of 18 interviews overall, across 16 institutions).

Hospitals included in the scope of the research: Fortis (FMRI & Vasant Kunj), Max Patparganj, Max, Medanta, Gangaram, BLK, AIIMS, RML, Indraprastha Apollo, St Stephens, Primus Super-specialty Hospital, Jaipur Golden, Pushpawati Singhnia Research Institute, Safdarjung Hospital, Army Hospital R&R.

Some of the Doctors interviewed amongst others were Dr. Avnish Seth, Director FORT, FMRI, Dr. Ravi Mohanka (Fomerly Transplant Surgeon, Medanta), Dr. Aman Gupta, Fortis Vasant Kunj, Dr. PB Singh, Director, Institute of Urological Science, Max Patparganj and Dr Vijay Kher, Chairman Nephrology, Medanta The Medicity, Dr. Sangay Singh Negi, Director Hepatobilliary Surgery & Liver Transplantation, BLK and Dr. Sunil Prakash, Director Kidney Transplantation BLK, Dr. Sudeep Naidu.

Recommendations of the Report:

• It is only through awareness programmes that the number of deceased donations can be increased. Large-scale advertising campaigns should aim to educate people about benefits of organ donation, clearing all prevalent myths and misconceptions. The concept of brain death needs to be adequately dealt with so that organs of the deceased which can be retrieved and utilized and do not go waste.
What is needed is a large scale campaign which only the government can undertake or fund. Clear messaging by the government will also add credibility to the cause. In fact all messaging in public places and hospitals in the form of standees, video spots etc. have to have the government logo along with that hospital in order to increase people’s trust.

• A central organ sharing registry or a recipient registry is an absolute must, so that donated organs can be shared in a fair and transparent manner. Apart from a few states, there are no sharing protocols in place. This leads to unethical and unhealthy practices. Further, it leads to wastage of organs which is a shame when a family has taken a courageous decision to donate. The sharing of cost between hospitals also has to be clearly defined.
This system however will not work in the current scenario with seemingly unhealthy and negative attitudes amongst the various stakeholders. There needs to be a spirit of cooperation, sharing and the willingness to adopt from successful practices in other parts of the country.

• There was a near unanimous response from the medical fraternity that making the declaration of brain death mandatory will increase instances of organ donation. Making brain death declaration mandatory will help facilitate a discussion between the doctor/physicians and the relatives about brain death and organ donations. It would help Transplant Coordinators and personnel from other Departments to intervene and convince the relatives about organ donation.

• It is imperative to understand and acknowledge the pivotal role that the Transplant coordinator plays in the entire process of organ donation and transplantation. It is only when that the hospital is able to establish a personal rapport with the patient and the patient’s relatives, can they create a precondition necessary to establish talk regarding organ donation later on. An increased number of Transplant Coordinators would help in creating awareness and also help in counseling the relatives to manage the system of organ donation. Higher numbers of Transplant Coordinators are required in a public set-up as the amount of patients there are significantly higher.
• Improve Infrastructure within public hospitals for transplantation. Transplantation as a service should be readily available in all Government hospitals as the majority of patients go there for treatment and many cannot afford treatment at private hospitals. The Government also needs to take the necessary steps to improve the infrastructural set-up at all public hospitals to store/transport organs and train the hospital staff/personnel for organ transplantation procedures and on the subject of brain death, and how to increase awareness regarding the same.

• Non-transplant hospitals need to be involved in organ retrieval. These medical centers (which have ICU’s but are not transplant centers) are crucial because a lot of accident victims are brought here for treatment. They should be geared up for brain death declaration. They need to be given an incentive to be participants in organ retrieval, and a system has to be worked out wherein they are compensated adequately for their active involvement in the Organ Donation programme.

• Sensitization of police personnel and the forensic experts has to be taken up on a war footing to make all medico-legal cases smooth. Most brain death cases are accident cases and therefore medico legal cases. They usually are difficult to handle as they do not get cooperation from these quarters.

• Provide the public with organ donor intent forms and brochures while issuing driving licenses, Aadhar cards and college ID cards, so they can choose to express their intent on the cards.

• Emulate successful practices from other states: States such as Tamil Nadu for instance have recorded an 80% conversion rate40 when it comes to donating the organs of one kin. The state has a record organ donation which is 15 times the national average. An important step in this direction was the creation of a network of hospitals for sharing organs. The same should be replicated in other cities, like Delhi.
The Maharashtra government made it compulsory for all non-transplant hospitals equipped with an ICU and operation theatre to retrieve organs for harvesting and made it mandatory for them to officially identify brain dead patients. This was a crucial point highlighted in the primary research as well and hence, needs to be implemented in the Delhi/NCR region.