Organ donation and its relevance in current scenario in India

Last Updated on June 21, 2023 by Shabnam Sengupta

There is very little awareness amongst the public regarding organ donation in India. This has led to a lot of myths and misconceptions about organ donation. Not many people are aware of organ donation and not many people are willing to donate organs. August 13 is observed as Organ Donation Day. Therefore, on this occasion, THIP media attempted to spread awareness about organ donation in India and spoke with Dr Harsha Jauhari, Senior Consultant in the Department of Organ Transplant of Artemis Hospitals, New Delhi, and Ms Pallavi Kumar, Executive Director for the Delhi NCR region of MOHAN Foundation.

Dr Harsha Jauhari, MBBS, MS, FRCS, FICS, FAIS awarded with Dr B C Roy National Award in 2016 by the President of India. Dr Jauhari is one of the leading experts in the field of organ transplantation in India.

Pallavi Kumar is the Executive Director at MOHAN (Multi Organ Harvesting Aid Network), Delhi-NCR Region. MOHAN is a dedicated organisation that has tirelessly promoted deceased organ donation.

Can you tell us what MOHAN stands for?

Ms Pallavi Kumar: MOHAN is an acronym for Multi Organ Harvesting Aid Network. It is an organisation that has been working to promote deceased organ donation for the last 25 years now.

What are the most common and the least common organs harvested in India? Which organs and tissues can be donated while a person is alive and after death?

Dr. Harsha Jauhari: Kidneys and liver can be donated from a live donor and these are the most common ones. Taking organs from deceased donors is still very less. Even in such cases, kidney and liver transplants are most common and the least common ones are the intestines and lungs transplants. Nowadays, heart transplants have also increased as compared to earlier. You can take some skin for tissue from a live donor occasionally, but other than that, tissues normally are not donated from a live donor. Organs like eyes, and bones, skin, blood vessels and nerves can be taken from a deceased person. You can also take composite tissue like a hand, foot or toe from them. These are some organs and body parts that one can get from a deceased donor.

What is the process of organ donation in India? Also, seeing the lack of organ donations in general in our country, where does the process fail?

Ms Pallavi Kumar: There is a living donation where a person can give one kidney or a portion of the liver. Then there is deceased donation after death, which is happening in our country in the cases of brain death.

If a person is brain dead and has been hospitalised and put on a ventilator before it happened, the ventilator pumps the heart. This way their organs get oxygenated blood. The person is not alive anymore but the organs are still functioning. This is a situation where we approach the families and request them to think about organ donation. I must have spoken to so many families in the last 12 years that I have been in this field, and it is not an easy job. However, for a person who has been doing it for many years, it could be their 100th conversation, but for the family they are talking to, it’s a very fresh grief of losing their loved one. This may create some gaps.

Also, it is important to understand if you look at a brain-dead person on a ventilator, it looks as if the person is still breathing. It looks as if a person is in a coma in some deep state of unconsciousness. It’s very difficult for families who do not understand the concept of brain death to accept that their loved one is dead because they think that the person is breathing. If there’s been no conversation about organ donation prior to this moment of intense grief, then this is an additional decision that they have to take. And very often the easiest way for them is to refuse.

It can be quite emotionally challenging for someone to convince families for organ donation after the death of their loved one. How do you deal with it?

Ms Pallavi Kumar: We focus on the families that agree for organ donation and the good that comes out of it. This is what keeps us going. So, while a lot of families refuse to donate, we keep on reminding ourselves of the families that agreed. But it’s not easy.

Q: There is a lot of fear and taboo about organ donation. What are the risks of organ transplant surgery for both the receiver as well as the donor?

Dr Harsha Jauhari: The recipients generally have a lot of complications and comorbidities. Most of them are diabetic, hypertensive, and have kidney failure, anaemia and uraemia among other conditions. Doctors treat them and make them as fit as they can for the operation. You cannot keep them at such a level of fitness for long. Many kidney and liver patients are in fulminant hepatitis. In such a situation, they cannot survive if they don’t have the transplant in the next few days. It is the same in the cases of the heart and lungs. So, there is a risk, but it is a calculated one. In the cases of kidney transplants, survival is as good as any other operation.

As far as donors are concerned, live donors, by definition the person has to be normal. It requires a whole lot of investigation. And our responsibility towards the donor is more. This is because the donor is healthy. We cannot make them unhealthy in order to make somebody else better. So that is why the law also comes in. Our responsibility towards the recipient is to make them treat them and improve their condition. At the same time, it is our responsibility towards the donor to make sure that they are healthy even after the surgery. Therefore, doctors are very careful.

Q: Can age and blood group compatibility be a factor for organ donation? And also, if people have certain health conditions, can people donate organs?

Dr Harsha Jauhari: The blood group used to be a huge concern a few years ago. However, we have begun to cross the blood group barrier fairly routinely now. So, nowadays we are crossing for kidneys and liver routinely. The results are virtually as good as those with the same compatible blood groups.

Nowadays people donate at the age 65 and 70 years as long as they are fit. Their fitness level is a value judgement of their doctor. So, as long as donors are healthy, age is not much of a factor. People can donate as well as receive organs based on the analysis of the doctor about their health.

Many people who have hypertension or diabetes become ‘marginal donors’. After the age of 40 years, people start developing such conditions. Therefore, we take a calculated risk if no other donor is available. We can also have a donor who is a cancer survivor and has been two- or three years cancer free. Similarly, there are people who underwent hysterectomy, mastectomy or gallbladder surgery. They can also be fit for the surgery. It is the same with people suffering from appendicitis. We have a lot of marginal donors these days, and they are doing fine.

Ms Pallavi Kumar: The most common question that we get from people about organ donation is when can one donate. I would like to tell everyone that you have to decide whether you want to be a donor and inform. If you decide to donate, our team will assess whether your organs are in a condition to be donated. A couple of years ago, Mr Tej Ramji, a former member of the board of directors at Sir Ganga Ram Hospital had a brain death at the age of 88. His family wanted to donate his organs. And we thought about what we could possibly retrieve due to his age. But he lived a healthy life, and therefore, we could retrieve his kidneys and liver. However, usually, organs that are taken from older donors do not go to young recipients.

Q: You told us that even cancer survivors can donate organs. Do you think that there can be fear among the recipients that they might also get cancer because of the organ donated by a cancer survivor?

Dr Harsha Jauhari: Yes, people can be fearful. However, the people involved in these processes are very thorough, and they guide the patients very well. Also, there are a lot of checks, rechecks and counter-checks. Nothing is done casually.

Q: Do you have any activities to promote organ donation from MOHAN Foundation?

Ms Pallavi Kumar: We have been conducting public awareness programmes, engagement in the media, etc. We do a lot of training. We are very serious about the training of the group of people whom we call the transplant coordinators. These are the people who coordinate all the living donations and deceased donations in a hospital. We also conduct training of the critical care staff who will identify and declare brain death, and the training of the neurosurgeons.

Q: If an organ donor dies, what are the steps that family members can take to harvest their organs? Also, what is the time frame within which that decision to donate the organs has to be made?

Dr Harsha Jauhari: There are two kinds of disease donors. One is brain stem death and the other is cardiac death. If a person stops breathing, their heartbeat also stops. If this happens at home, it doesn’t leave any scope of doing anything at that point, except for donating corneas.

People can come home and take the cornea. This is because, by the time the process is started, it will be too late to retrieve any other organ, as the rest of the organs will be deprived of oxygen and cannot be removed or used as a result. On the other hand, when you have people who have got brain stem death, it cannot be diagnosed at home. They are either road traffic accidents or they are accidental deaths, electrocutions, etc. Therefore, they have to be admitted to the hospital. There are eight separate examinations before you can declare someone brain-dead.

After this, the transplant coordinators get in touch with the patient’s family. So, if the death of a donor happens at their home, people can go and retrieve their corneas. All this has to take place in centres which have been so designed. And now we have widened it from being transplant activity of donor and recipient at transplant centres. We now have an NTORC (Non-Transplant Organ Retrieval Centre). Any hospital that is a trauma centre or has got ICU and some beds and a good OT can be declared a donor centre.  If a brain-dead person comes in, someone will go there and help declare their brain death. The organs can be removed from there and then moved to the transplant centre.

Misconceptions around organ donation have to be dealt with. Hospitals are not trying to make money out of it. It is not possible. It’s a government activity.

Q: You mentioned NTORC. Do all the states have NTORC centres?

Dr Harsha Jauhari: The authority is there, the concept is there, and the difficulty is to try to involve a nursing home or a good hospital in this. This is because if you have a donation taking place, it looks like a war front the next morning. Those people have to be motivated one way or the other to get involved because they get nothing apart from some publicity. So, we are making an effort. It’s all over the country. Especially the trauma centres that the government has established all over the country are the ones which are going to be labelled in each major city. Also, the objective is to have some transplant activity in every medical college in the country. We have to start by forming a department of transplantation medicine. People are currently working on this so that we have people trained to remove organs from around.

Ms Pallavi Kumar: If there is a death in the house, you cannot be a solid organ donor, organs that save other people’s lives. However, you can be a corneal donor. And while organ donation is a bigger ask, corneal donation is not. After my father’s death, we asked for it. Corneal donation is one of the smallest procedures. It’s non-invasive and does not cause any disfiguration or bleeding. The procedure can be done at home, a mortuary or a hospital.

Q: What are the legalities associated with organ donation in India? And what would you suggest if it’s a very complicated chain of events? Do you suggest it to make it simpler or are you happy with the way things are done now?

Dr Harsha Jauhari: The law has intruded upon this particular facet of medical care. Earlier the first introduction of the law was to prevent commercial trade of any organs in 1994. The concept of brain stem death was included in that at the time. After that in 2004, we revised it and had the new amendments that brought in a whole lot of things. I was one of the people on a very high-powered committee appointed by the Delhi High Court. One of the changes was that every hospital has to be registered. They must have transplant coordinators, and each hospital has to have a website. The decisions have to be taken in such a way that everything is transparent. We set up an organisation, which is now called NOTTO (National Organ Tissue and Transplant Organisation). We also introduced the concept of the National Organ Transplant Programme.

This programme sets the infrastructure training. We also have the concept of required requests. So, if someone dies in a hospital, often their family members blame the doctors involved for the death of their loved one, whether they were responsible or not. In such a situation, if a doctor at the hospital goes up and asks for organ donation, the situation can get out of hand. Therefore, we came up with this concept of required request. There are sign boards that are put up all over saying that the doctor on duty is required by law to ask for the organs. You are free to say yes or no. This made a lot of difference because when families are sitting outside and seeing the patient inside, they read all these things. It makes an impact. We are now trying to move for the ‘uniform declaration of death’.

A doctor who has just been registered can go up and certify somebody dead if the heart and lungs have stopped working. Whereas for a brain stem death, you need four senior doctors in India who examine independently following a checklist. This process is repeated again after six hours. Only then can they declare someone brain-dead. The documents that the doctors are required to maintain during this process are very lengthy. In cases of organ donation, people are supposed to move around with a huge stack of documents every time. So, we are trying to bring in a single document explaining the identity of the deceased and the causes of death. The rest of the documentation can be kept in the hospitals. But this single piece of paper can be taken to the banks, or for permission or to the registrar’s office.

There is another thing that we see sometimes. People come and want to give the whole body of their loved one for donation, asking to use the organs that we need and giving the rest of the body for research purposes. There are two separate acts, which we are trying to bring into one so that if a family wants to donate the organs and the body, we can take the organs that are required and the body can then be used for training and scientific purposes.

Q: Organ and tissue donation mutilates the body. Is it a myth or a fact?

Dr Harsha Jauhari: It is a myth.

Q: Religion bars organ donation. Is it a myth or a fact?

Ms Pallavi Kumar: Religion does not say anything about organ donation. When the religious texts were written, the idea of organ donation and transplantation did not exist. It is a myth.

Q: The donor’s family is charged for donating organs. Is it a myth or a fact?

Ms Pallavi Kumar: No, in fact, they are not charged at all. According to the law, the billing for a donor family will stop the moment they give consent to organ donation. There are a lot of tests that are performed. The person continues to be on the ventilator until all the procedures are done and the body is taken for the surgery. There is a lot of expenditure involved, but it is not charged from the donor’s family. Either the hospital bears these expenses or the recipient. Many hospitals as a mark of respect wave off the entire bill if the family had just come the previous night. But according to the law, the billing will stop the moment the hospital receives the consent for organ donation.

Q: Anyone can be an organ donor. Myth or Fact?

Dr Harsha Jauhari: Yes, in 99.9% cases, people can become organ donors.

Q: Only the heart, liver and kidneys can be donated. Myth or Fact?

Dr Harsha Jauhari: No, as I already told you, about 8 organs and any number of tissues can be donated.

Q: A person under the age of 18 cannot take decisions on organ donation. Myth or Fact?

Ms Pallavi Kumar: That’s right. According to the law, a living donor definitely has to be above 18 years of age. But in the case of a deceased donor, the parents are the decision maker. So, we’ve had children as young as a few days old who were donors, but that’s only in the cases of deceased children. But a living donor has to be 18 and above as per the law.

Q: If the ICU doctors know that the patient is an organ donor, they won’t work hard enough to save the patient. Myth or Fact?

Dr Harsha Jauhari: This is totally wrong. It doesn’t matter whether the patient is an organ donor or not, they will be treated in the same way as any other patient, putting their survival and well-being on priority.

Ms Pallavi Kumar: The conversation of organ donation only comes up once the death is declared by a team of 4 doctors. Until then, they are a patient for the hospital.

Q: While awaiting transplant, the rich and famous get priority. Myth or Fact?

Ms Pallavi Kumar: It is a myth and I am very proud to say that there are fairly robust systems in place now. Most of the states that have defined organ transplant programmes have state registries. A person who wants an organ has to be a patient of a hospital and has to be on the waiting list of the hospital. Hospital hands over the waiting list to the state waiting list and there is a fairly transparent systematic and equitable system in place.

Dr Harsha Jauhari: I’ll just add one more thing to that. About 35-40 years ago, organ transplants used to cost a lot as well as the post-op expenses were also very high. But things are changing now. We are also talking about bringing the cost of transplants down to less than 5 lakhs. We are trying to bring it down to the economically weaker section in every possible way. A lot of hospitals bear the expenses of the treatment after the transplants. It is no longer true that only rich people can have organ transplants. It is very much a treatment for the common man.

Ms Pallavi Kumar: There are multiple schemes in place, which people should actively look for and know about.

Q: Having a donor card is all that is required to become a donor. If a person writes in a will about his or her organ donation, he or she need not inform the family. Myth or Fact?

Ms Pallavi Kumar: No. If you want to donate organs after your death, you have to convey this to your immediate family members. In our country, as per the law that we have, the family in charge of the deceased person is the final decision maker. No matter what you have done while you were alive, whether you wrote a will or had a card, the family will be consulted, and the family’s decision is fairly sacrosanct in our country.

Q: Organ donation will make the body look ugly. Myth or fact?

Dr Harsha Jauhari: For a live donor, now with laparoscopic surgery you got a few punctures here and there. And the retrieval of the organ again is in a very cosmetically acceptable way, and for the recipient as well. We don’t mutilate. In the case of a deceased donor, you have an incision which is closed in the abdomen or the chest. If the bones are taken out, splints are put in. They have artificial lenses that they put if one wants them after in the cases of eye donation. There is no mutilation.

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