Convincing families to donate organs: The toughest job in the world?

On World Organ Donation Day 2022, Dr (Col) Avnish Seth, VSM, Head, Manipal Organ Sharing & Transplant (MOST) talks about the common issues that arises while convincing a family for organ donation

Mr AB, 55 years, was not doing well. In the ICU of a corporate hospital, he was on ventilatory support following a massive brain hemorrhage. The doctors were doing their best. The family sat huddled in the waiting area outside the ICU. They tried hard to look composed, hiding the turmoil inside. The doctors told them that their loved one was fighting for his life. The large blood clot had been removed surgically but the brain had swollen up because of on-going bleeding and the extensive injury. The family prayed, hoping against hope. Hours looked like days. There were no signs of improvement. When the ICU team suspected brain death, a team of four doctors, approved by the State Government, assessed Mr AB. Mr AB had suffered brain death.

Now came the delicate part. How to break the bad news to the family, How should they be counseled on the opportunity to donate organs, Will they understand the concept of brain death even as they see the heart beating on the monitor, How much time should be given to accept the loss of a loved one before the family is requested to consider organ donation… Time is at a premium. The quality of organs deteriorates with every passing hour after brain death. But the job has to be done. The Transplantation of Human Organs and Tissues Act of 2011 says that the treating doctors have an obligation to tell the family about the opportunity of saving lives by donating organs. There are 4 lakh individuals who need a transplant annually, hoping for such magnanimity from a donor family.

This scenario plays out daily in hospitals across the country. We have close to 900 deceased organ donors in a year in India. The consent rate by families varies from state to state but the average is about 30 per cent. That means we have close to 10 brain dead patients in the country every day, whose families are being spoken to. Let us see some common issues that arise during such times.

Who should convey the bad news to the family?

The family is informed about the brain death of their loved one by the treating neurologist / neurosurgeon along with the ICU team. The family should be given adequate time to accept the loss of their loved one as the concept of brain death with a beating heart may be difficult to understand and accept.

Who should approach the family for organ donation

Transplant coordinator is a person appointed by the hospital for coordinating all matters relating to removal or transplantation of human organs or tissues or both and for assisting the authorities in removal of human organs. The transplant coordinator works closely with the medical and nursing staff as well as with the donor family. Theirs is a tough job. Deadlines to meet, documents to be completed, no time to eat or sleep and yet, lives to be saved. In the midst of all this they have to manage a smile on the face, a comforting word, a tender touch, a phone call, provide a glass of water to the family and wipe a tear. It is good practice to counsel the family with a team comprising of transplant coordinator, a senior nurse and a senior medical professional with the latter providing medical inputs when needed.

Is organ donation legal ?

The Transplantation of Human Organs Act 1994 first provided for the regulation of removal, storage and transplantation of human organs for therapeutic purposes in India. The Act was revised in 2011 and implemented through Rules of 2014, thus  bringing about several changes to streamline the process of declaration of brain death and organ retrieval.

Is brain death reversible?

Brain death is death. In patients with brain death, injury occurs to the brain due to stroke, head injury or brain tumor so that the brain dies but the heart continues to beat for a few hours or days and the vital blood supply to the organs is maintained. Brain death is irreversible.

How many organs and tissues can be donated?

A single non-living beating-heart donor can save eight lives by donating heart, lungs, liver, kidneys, pancreas and small bowel. Also, once the heart stops beating, several tissues like cornea, heart valves, eardrums, ear bones, tendons and skin could be donated.

Are there expenses involved with more tests?

Diagnosis of brain death is not complicated or expensive. The diagnosis of BD in India is based on bedside tests performed by a team of four doctors and repeated after 6 hours.

Does my religion stop me from organ donation?

Religious beliefs are often quoted as an excuse for poor organ donation rate in the country. All religions allow organ donation.

Will donating organs affect the quality of treatment?

The subject of organ donation is raised only after brain death. The treating teams have a mandate to spare no efforts in saving life and have no part to play in the process of organ donation.

Will our loved one feel pain during the organ retrieval?

A person who is brain dead perceives no pain. Organs are removed with the greatest care and dignity by a team of specially trained surgeons in the operation theater.

Will the organs be allotted to the rich and the influential?

The National Organ and Tissue Transplant Organization (NOTTO) is responsible for allotment of organs. This is based on a transparent system that ensures that the patients who are sicker are transplanted on priority and that the waiting list is not influenced in any manner.

Mr ABs daughter reminded everyone in the family that he had pledged to donate his organs and eyes after death. The family decided to respect his wishes and signed on the dotted line, thus gifting life to eight and sight to two individuals. He will live-on.

 

National Organ and Tissue Transplant Organization (NOTTO)organ donationWorld Organ Donation Day 2022
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