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Submitted by Jaya Jairam on 11 July 2020

There are more than 100,000 deaths per annum in India due to organ failure. Most of these could have been prevented if there were enough organ donors. Jaya Jairam, Project Manager MOHAN Foundation addresses the myths and misconceptions that exist and urges each one of us to be an organ donor.

It is estimated that more than a million Indians suffer from end stage organ failure annually, while only around 10,000 are able to get a life-saving transplants in a year. Unofficial statistics from India indicate that there are nearly 300 deaths every day due to organ failure, translating to more than one lakh deaths per annum. Sadly, they could have been saved, if there were enough organ donors.

India sees more than 1.5 lakh road traffic accidents every year and it is estimated that around a lakh of these could have been a potential donor. If each potential donor were to donate say 5 organs, it would have meant that 5 lakh organ failure patients could have received the new lease of life. However the present reality is that a mere 875 brain dead donors end up donating, thereby contributing to around 2300 transplants, while the rest of the transplants are through living organ donors. This effectively means that 99,125 deceased donors end up not donating their organs, i.e. nearly 5 lakh organs are either burned or buried, while they had the power of saving somebody. Undoubtedly, there is an acute shortage of organs in India.

One of the reasons for such shortage is the many myths and misconceptions clouding the topic, particularly among those who have not personally encountered transplant recipients or family members of donors. Rumours, myths and misunderstandings about organ donation and transplantation are widespread in India.

Recent advances in medicine and surgery have undoubtedly served to create awareness amongst the masses that many more lives can be saved by organ transplants, and yet, there is a severe shortage of donors. There is a crying need to address the myths and misconceptions associated with organ donations by the living, as much as by those who are dead (known as cadaver donations). Since sustenance of organ transplants cannot succeed without majority participation and support of the community, it is important to explore all the avenues and remove the stumbling blocks so that budding donors feel at ease when making a decision to donate.

Some of the myths listed below have a corresponding reality check that we need to be aware of:

Myth: Organ transplantation is still in the experimental phase of surgery and is possible only in the highly developed western countries
Reality: Organ transplantation involves surgery to remove a diseased organ and replace it with a healthy one. The person who donates the organ is called a “donor” and the patient who receives it is a “recipient”. Transplantation has become one of the most remarkable success stories in the history of medical science. Almost every organ, except the brain, can now be transplanted with very high success rates. It is no more experimental, but an accepted, well understood and established method of treatment of organ failure all over the world.

Myth: Apart from being an altruistic act, I or my family have nothing to gain from organ donation
Reality: That, as a matter of fact, is not true. From the existing data, the glaring reality remains that during our life span, each one of us has more chance of requiring an organ transplant than being a donor! So in case you ever have the misfortune of being afflicted with an organ failure your life then would depend on an organ donor. Thus, in simple terms the more organ donors there are, the more your chance of organ tranplant is!

Myth: Only eyes can be donated after death.
Reality: Tissues like eyes, skin, bones, etc., which do not require blood supply can be donated after death. Other organs such as liver, heart, lung and kidney can also be donated but only after “brain death”. When someone is brain dead, it means there is no blood supply or oxygen to their brain and that their brain is no longer functioning in any capacity and it never will. It does not mean that other organs such as liver, heart and kidney are also dead, because they may function for just a few more hours or a few days, as long as the brain dead patient is put on the ventilator (which does artificial respiration) and is being monitored by the ICU doctors. These organs may be used to save another individual through transplant, whilst they are still workable. But time is of the essence here, since all these organs will become non-functional within a short time period.

When making a decision to donate organs you may be saving the lives of 8 others through organ donation (heart, lungs, liver, kidneys, pancreas and small intestine) and many more can be healed through tissue donation (eyes, skin, heart valves, bone and cartilages, etc.)

Myth: They say my relative is Brain dead and no more; but his heart is still beating and he is still breathing. How can he be dead?
Reality: It is true that patients who are ‘brain dead’ do not appear dead. Their hearts are beating, they look normal, and they even sweat. One of the reasons, why it is hard to for relatives to accept that their loved one is dead, is because they see their relative’s heart still beating (on the ECG monitor) and chest going up and down, indicating breathing. The fact is that the heart beats with the assistance from extensive life support machines and medicines. The criteria for brain death have been accepted all over the world since 1968 and it has been legalised in India since 1994.

Brain death is indicated if eight criteria are fulfilled, notable ones being:

  • They cannot breathe without the assistance of a ventilator. Within minutes of stopping the ventilator, heart will stop beating.
  • They have no response to pain.
  • Their pupils do not react to light.
  • Basic brain reflexes do not work.

In India the rules for brain death declaration are the most stringent in the world. Four different physicians will independently perform eight sets of tests to confirm brain death. Donation after brain death is called cadaveric donation or deceased donor donation.

Myth: Brain death means coma
Reality: Brain death and coma are completely different. Coma patients are not brain dead at all. If we perform the above mentioned eight tests of brain death, they will all be negative. Patients in coma are alive, just as you and me and will not be considered for organ donation at all. On the other hand brain death means death. There are no ifs and buts about brain death. The brain stem death is absolute, permanent and infallible.

Myth: I have always understood that when an individual dies, the heart stops beating. Since my loved one’s heart is beating, he is still alive.
Reality: The heart has its own pacemaker independent of the brain. As long as it receives oxygen, it continues to beat. The heart could actually be removed from the body, placed in a saline solution, given oxygen, and it will still continue to beat for some time! This is like a lizard’s tail, which can continue to wriggle even after it is cut off. But remember, this is only for a short time. Eventually, the heart will stop, despite being on maximum life support machines.

Myth: My religion discourages organ donation
Reality: There are 22 major religions in the world, none of which discourage organ donation. Organ donation, as you can see, is a pure act of ‘charity’ and ‘love’ for some stranger so that he or she can continue to live in this world with his or her loved ones. These virtues of charity and love are undeniably given foremost importance in all religions. Therefore it is a supremely noble act by which one human being can provide life to many others and has been endorsed by many religious and spiritual leaders.

Myth: If I agree to donate my organs and the doctors see the donor card in my wallet, they won’t work hard to save my life
Reality: When you go to the hospital for treatment, the doctors focus on saving your life – not somebody else’s. You’ll be seen by a doctor whose speciality most closely matches your particular emergency. The doctor in charge of your care has nothing to do with transplantation.

Myth: I’m under age 18. I’m too young to make this decision
Reality: That’s true, in a legal sense. But your parents can authorize this decision. You can express to your parents your wish to donate, and your parents can give their consent knowing that it is what you wanted. Children, too, are in need of organ transplants, and they usually need organs smaller than those an adult can provide. In fact, in many other developed countries, knowledge of organ donation is mandatory for school children.

Myth: I’m too old to donate. Nobody would want my organs.
Reality: There’s no defined cut-off age for donating organs. Organs have been successfully transplanted from donors in their 70s and 80s. The decision to use your organs is based on strict medical criteria and the actual health of the organs, not age.

Myth: Celebrities and influential persons get to skip the waiting list due to their financial status.
Reality: When you are on the transplant waiting list for a donor organ, what really counts is the severity of your illness, time spent waiting, blood type, and other important medical information. Your income and social status have no bearing when determining how organs are allocated.

Myth: If you agree to donate your organs, your family will be charged for the costs.
Reality: There is no cost to the donor's family for organ and tissue donation. As soon as the family members give their consent to donating the organs and tissues of their loved one, the hospital billing is stopped and no further costs pertaining to donation of organs are to be borne by the family, as mandated by the Transplantation of Human Organs Act, 1994. Funeral costs remain the responsibility of the family.

Myth: Your history of medical illness means your organs or tissues are unfit for donation.
Reality: Even if you have a history of medical illness including diseases as diabetes, hypertension, myopia, etc., your ability to donate organs or tissues will be determined at the time of death. So, if organ donation is important to you, make your wishes known to your loved ones and be rest assured that the medical professionals will review your medical and social history to determine suitability for organ donation. In case of certain illnesses such as active cancer, HIV, septicaemia, etc., where the risk of transmission of disease to the recipient exists, the doctors will decide not to go ahead with organ and tissue donation.

Myth: “I am an organ recipient. Can I be a donor when I am no more?”
Reality: Organ recipients may not be suited to become tissue donors due to the immunosuppressive drugs that are administered; but the eligibility of donating healthy organs is decided by the medical team.

Myth: “If I register to donate my eyes only, will they take any other healthy organs as well?”
Reality: You may specify which organs you want donated and share this wish with your loved ones. Whenever the time should come, your family needs to express this wish to the medical team and it will be strictly complied with.

Myth: Organ/ tissue removal affect cremation/ burial arrangements or disfigure the body
Reality: Removal of organs or tissues will not interfere with customary funeral or burial arrangements.The appearance of the body is not altered. A highly skilled surgical transplant team removes the organs and tissues which are then transplanted in other patients. Surgeons stitch up the body carefully; hence there is no disfigurement. The body can be viewed just as in any other case of death.

Myth: If I donate my organs it will cause delays to my funeral arrangements
Reality: Yes there is a possibility. However, given the altruistic nature of the donation, families usually accept this and take it as part of the process of donation.The families are taken into confidence by the hospital team and are constantly reassured about the estimated time of handing over of the body.

Myth: If I donate organs, I will be born without them in the next birth
Reality: Organs are destroyed anyway when you are cremated. In the words of a well-known spiritual leader, “the organs either become ashes when you burn them or they become food for worms when you bury them”. The physical bodydoes not survive death, so the organs hold no relevance even if you believe in rebirth. It is written in the Hindu Holy book, Bhagavad Geeta that, “When a person dies, it is the ‘atma’ or soul that takes rebirth. The body is discarded like old clothes”. This verse beautifully endorses organ donation because don’t all of us take pleasure in donating our old and discarded clothes which are in good condition, so that the not-so-privileged people can use them?

Myth: It is enough if I have a donor card
Reality: No. Just having a donor card is not enough. You need to carry it at all times in your wallet or purse, just like you carry your credit cards, debit cards, ID card, etc. Most importantly, you need to inform your relatives about your wish so that they can honour your wish at the moment of truth.

Myth: Once I become an organ donor, I can never change my mind
Reality: You always have the option to change your mind at any point of time. You can withdraw your registration by writing to the body with whom you have registered, tear up your organ donor card and let your family know that you have changed your mind.

Being an organ donor can make a big difference, and not just to one person. By donating your organs after you die, you can save or heal as many as 50 lives. Many families have expressed that knowing their loved one helped save other lives, helped them cope with their loss.

MOHAN (Multi Organ Harvesting Aid Network) Foundation is a pioneering NGO in the field of organ donation. Started in 1997, it began advocating this very difficult cause at a time when no one in the country was talking about it and it was a taboo topic. The Government of India passed the Transplantation of Human Organs Act in 1994 to broaden the concept of organ donation and stop commercial dealings in organs, especially kidneys. 

The Foundation’s main activities include –

  • Public Education on deceased organ donation so that families of brain dead patients can say yes to organ donation, thereby saving more lives
  • Training Healthcare professionals such as Transplant Coordinators, Critical Care doctors and nurses and young transplant surgeons, so as to impart the necessary skillset required for enabling organ donation, brain death testing and certification, organ transplantation and grief counselling in a smooth manner.
  • Counselling bereaved families in Hospitals so that the families can be supported and encouraged to decide to donate their loved one’s organs.
  • Liaising with State and Central Governments so as to pass legislations that promote organ donation.

If you wish to be donor, call our National Organ Donation Toll Free (24x7) Helpline No. 1800 103 7100 (available in 8 languages). You can take the online pledge at https://www.mohanfoundation.org/donorcard.asp. It is very simple and will not take more than a couple of minutes. The donor card is then emailed to you, which you must show your loved ones and discuss with them.

 

Jaya Jairam founded MOHAN Foundation’s Mumbai operations and has been passionately furthering the cause since then. She dreams of an India where the waiting list of people hoping to receive organs is non-existent and where it is not so hard for people to get second chances at living lives with their loved ones.