Organ donation is a gray area for most people, difficult to discuss; we all recognize it can be life-saving, but it requires an uncommon comfort with planning ahead in the event of one’s death. This is complicated by the intricacy of the process, which can confuse even the best intentioned. The comprehensive guide that follows has been compiled after speaking with donors, doctors and NGOs involved across all stages of India’s nascent organ donation system. If you’ve ever had any questions about what’s involved, read on for answers.

What exactly is organ donation?

Organ donation is the process of gifting your vital organs to save someone’s life. Legally speaking, it the act of removal, storage and transplantation of organs for therapeutic purposes.

Can I donate my organs only after death?

Technically, no. It is possible for living donors to donate one kidney, a portion of the pancreas (half is adequate to sustain function), or a part of the liver (which can regenerate). But the process is very closely monitored and heavily restricted, especially if the organ donor is not a close relative. This FAQ primarily explores post-death organ donation.

What are the medical circumstances that allow for organ donation after death?

Most organs can only be harvested effectively after brain death, which occurs when a person’s brain shuts down before the heart. This is less common and different from a cardiac death, which occurs when the heart shuts down first, prompting multiple organ failure from lack of blood. In a brain death, the person’s organs can continue to get the blood they need to stay viable for transplant, assuming the person is in a hospital and attached to a ventilator. Brain death is rare and is generally the result of a sudden stroke or aneurysm, possibly following an accident or blow to the head.

In certain circumstances, it is possible to donate specific, integral body parts following a cardiac death.

What organs can be transplanted successfully?

Kidneys, the liver, the heart, lungs, the intestine and pancreas can be transplanted after brain death.

In case of a cardiac death, one can donate the cornea, heart valve, skin, and bones, provided they are harvested within an hour after death.

Is there an age limit to donate organs/tissues?

Yes. In the case of post-death donations, the deceased needs to be over 18. And while advanced age is a limitation, it’s not as much of a restriction as one might think: According to India’s National Organ and Tissue Transplant Organization (NOTTO), a person can donate their heart, heart valves and lungs until age 50; pancreas and intenstines up to age 60 to 65; kidneys, liver and bone up to age 70; and cornea and skin until age 100.

Must a donor undergo any medical testing?

All that is required at the stage of signing up is simply consent. Following death, however, organs are screened for HIV and other infectious diseases. Organs found to be infected or unsuitable are donated to institutions for research purposes.

How can I be sure my organs will reach someone in need? 

According to Dr Sunil Shroff, Managing Trustee of the MOHAN (Multi Organ Harvesting Aid Network) Foundation, donated organs are allotted by NOTTO according to medical need. The recipient waitlist is posted online for full transparency and ease-of-access for hospitals.

However, there is no national standard for the critical transfer process. According to NOTTO guidelines, the recipient, government, institution, NGO or society is responsible for logistics and cost, and arrangements vary from state to state (and, it seems, between cases within a state). So while there are no reports of organs becoming unviable during transit, amid such a disorganized process with so many players, it is a possibility.

How do I become an organ donor? How easy or cumbersome is the process?

It’s a simple, two-step process. The first step is registering yourself as an organ donor in the national registry maintained by NOTTO. NOTTO is a parent body that monitors organ transplants across India with the help regional and state-level bodies linked with government (and some private) hospitals. At the time of pledging, you can choose which organs/tissues to donate. You register by:

• Signing up online directly with NOTTO.
• Expressing your desire to donate in person with a registered hospital in your city. You may have to make enquiries to find out which hospitals are affiliated to NOTTO.
• Registering online with an NGO. While many NGOs are involved in raising awareness about organ donation, not all of them share their donor list with the national registry, meaning your organs may not actually get to the people who need them the most. If you register via an NGO, check to make sure they share their donor list with the national registry. The MOHAN Foundation and ORGAN India – representatives of which were interviewed for this article – are two NGOs that do share their donor lists with the national registry.

After registering, you will need to download and print your donor card (or receive one by post) to carry in your wallet. It is a legal document.

The second step involves speaking about your decision with your family or, failing that, a trusted friend.

“Organ donation will proceed only after the next of kin has given their written consent,” says Dr Deepak B Saxena MD, PhD of the Public Health Foundation of India (PHFI). “Your organs are not harvested if your relatives disagree, even if you have signed a donor card.”

If I change my mind after registering, can I remove myself from the list of donors?

Yes. You can unpledge your organs with a simple click online. Dr. Saxena advises people to discuss the change of heart with family or a trusted friend.

Why is written consent from relatives required after I’ve legally registered as an organ donor?

In India, family consent is included in the process as recognition of the country’s unique and complex rituals and religious beliefs attached to funeral rites. Other countries require only a donor card; still others operate under a ‘presumed consent’ system in which organs can be harvested automatically unless the person or his or her family explicitly declines to donate.

Would my family bear any additional cost or burden?

In theory, no. The organ donation process is designed in such a way that the donor is not held responsible, but it is an imperfect system. Your family will be required to fill out forms to indicate their consent. Also, the harvesting may take up to 8 hours, delaying funeral rites. There is no grief counselling provided to family members during this time.

The cost of the operation to harvest organs is borne by the hospital that performs the surgery (and passed on to recipients’ bills). Some hospitals, though not all, make a hefty profit during this transaction.

However, many donations don’t play out in this ideal scenario.

“When my brother was declared brain dead, he had been admitted to a private hospital that did not have the facilities to harvest organs. We had to shift him to another hospital in order to donate,” says a family member of an organ donor, who prefers to remain anonymous. Neither hospital nor insurance policies agreed to bear the costs of the ambulance, which had to be fitted with a ventilator to keep the donor’s heart beating, costing the family 6 lakh rupees.

The family, alone in their grief, waited in the hospital for hours during the harvesting, only to be accosted by an NGO later.

“They wanted to take photographs of my elderly father to honour him for donating his son’s organs and to publicize his grand gesture,” says the brother. “I had great difficulty in persuading them to respect his grief and leave him alone.”

What are the greatest challenges to organ donation in India?

“Unfortunately when I ask anyone about organ donation or talk about it, it’s met with a look of distaste, sympathetic shakes of the head, and most likely – a quick change of topic,” says Sunayana Arora Singh, who runs ORGAN India and singles out awareness as the biggest challenge to the future of organ donation.

Other players note an insensitive system, the lack of grief counselling for relatives, the unscrupulous practices prior to the 1994 Organ Donation Act have combined to give organ donation a bad name that is hard to shake. (Prior to the 1994 law, transplants often took place from live donors through commercial transactions without any kind of ethical governance.)

“We need better advocacy, political will and community participation,” says Dr Saxena.