Like he did as John McClane in his ‘Die Hard’ outings, Bruce Willis is hanging in offscreen too. Just that the loud explosions, shattered glass and rattling gunfire have now given way to failing speech, fractured personality and fraying judgement. And unlike McClane, he won’t be walking out of the rubble. The 71-year-old actor has been undone by frontotemporal dementia and all his aching family can do is wait to bid their final goodbyes, a wait harder than the parting itself. They have decided to donate Willis’ brain to science, hoping that in death, he might bring some light to those staring at the same dark road.
A searing call like this, made by the family on behalf of someone who no longer has a voice, is as much an act of compassion as a legal labyrinth. That’s also where an uneasy tension overshadows organ donation in India: to whom does the body of the deceased belong—the individual or the family?
Consent conundrum
In India, where a new name joins the transplant waiting list every ten minutes, at least 15 people die daily waiting for an organ and the cadaver organ donation rate languishes below one per million population, the odds couldn’t be starker. On top of that, under the Transplantation of Human Organs and Tissues Act (THOTA), 1994, and its 2011 amendment, it is the grieving family that is required to decide, within a narrow window after bereavement, whether their loved one’s organs may be donated, even if the deceased carried a donor card or had registered as a donor.
“Although donor cards in India require two witnesses, they do not constitute consent during actual donation,” explains Dr. Sunil Shroff, founder of the Chennai-based MOHAN (Multi Organ Harvesting Aid Network) Foundation. “Here, we follow ‘informed consent’, which entails obtaining consent from the next of kin despite the donor card. It is unlike ‘presumed consent’, where the state presumes you are an organ donor unless you have stated on a national register that you do not wish to donate. If the wishes of a donor are known, the family complies most of the time.”
A donor’s pledge thus holds only when the family knows of it because, as Dr. Shroff says, donor registration data on the government portal may not always be available to hospitals when a decision must be made. “Legally speaking, a person’s documented wish to donate organs, whether through an Advance Medical Directive or a pledge under Form 7, does take precedence over family objections,” says Dr. Sunita Sheel Bandewar, General Secretary of the Forum for Medical Ethics Society. “But complexities arise when donors have not discussed their wishes with their significant others, who are no longer limited to just the next of kin.”
The wider that circle, the more fragile the consent. “Family consent can also be withdrawn at any moment, sometimes even as the deceased is being wheeled into the operating theatre,” says Dr. Raje Gowda A S, senior consultant for multi-organ transplant and HPB surgery at Prakirya Hospitals, Bengaluru.
Legal maze
Consent is not the only hurdle. Organs can be donated only after a person is declared brain-stem dead by doctors. But limited understanding of brain death often leaves families unconvinced that the donor is truly gone. Brain death certification also continues to be a procedural maze. The Births and Deaths Registration Act and the Indian Penal Code do not explicitly recognise brain stem death. Doctors are therefore uncertain about withdrawing life support unless organ donation is concurrently pursued.
When the deceased has made no prior pledge, the daunting moral weight of authorising organ donation falls on unprepared “near relatives” — spouse, parents, children, grandchildren, siblings and grandparents. Hospitals are therefore mandated to counsel families. “When our trained personnel speak to families,” says Dr. Shroff, “our conversion rate is 70%, the same as in the West.” However, there aren’t enough trained professionals to handle these emotionally difficult conversations between brain death and cardiac death, or the endless documentation required for organ retrieval.
To boot, the National Organ and Tissue Transplant Organisation (NOTTO) and its regional and state arms are inadequately coordinated. Without a real-time donor-recipient registry or national records of donations, transplants and hospital performance, organ allocations are slow and systemic improvements ineffective.
Anatomy of hesitation
“Time is of the essence during the consent phase,” says Dr. Raje. “Once someone is declared brain-dead, donor maintenance is critical. Physiological imbalances like acidosis, dyselectrolytemia and infection can affect the other organs. Earlier donation is better when the donor is clinically stable. Consent-related delays directly impact recipients.”
Yet, the biological clock often outpaces public trust. “Although on the rise, public awareness about organ donation is not yet where it needs to be,” says Dr. Bandewar. “Add to that fears of organ trafficking rackets and the dearth of equipped hospitals that offer a conducive environment for in-depth conversations with families, and it becomes clear why families struggle with the decision. The trauma of loss is further compounded by limited confidence in our healthcare system. People worry whether organs will be retrieved while respecting the deceased’s dignity.”
Despite these reservations, Indians are “very giving”, avers Dr. Shroff. “In a country where more than 80,000 corneas and well over 12 million units of blood are voluntarily donated every year, the problem is not with people but with hospitals. You need systems and processes, but you also need champions within hospitals to push the cause forward,” he says. Dr. Bandewar highlights a more fundamental barrier: “Indians just don’t want to talk about death and dying.” Indeed, the way forward must begin with conversations long avoided, as Willis’ family has shown.
