Transforming Lives Through Organ Donation Home Care Centres Institute of Transplant Medicine Transforming Lives Through Organ Donation Overview Organ donation is a powerful act of generosity that gives others a second chance at life.By choosing to donate organs or tissues, whether after life or as a living donor, you can help save lives, restore health, and bring hope to families in need. Every donor has the ability to make a lasting difference—sometimes for multiple people—simply through the decision to give. One organ donor can save up to 8 lives and improve the lives of many others through tissue donation. Organ donation Organ donation scenario in India Types of organ donation Opt-in/opt-out systems for organ donation Organ donation is the act of giving an organ to save or improve the life of someone whose survival depends on an organ transplant. The organs and tissues that can be donated are liver, kidney, pancreas, heart, lung, intestine, cornea, bone, skin, heart valve, blood vessels, nerves, and tendon.Who can be an organ donor?Living Donor: Any person not less than 18 years of age, who voluntarily authorises the removal of any of his organ and/or tissue, during his or her lifetime as per the prevalent medical practices for therapeutic purposes, can become an organ donor.Deceased Donor: Anyone, regardless of age, race, or sex can pledge to donate their organ and tissue after his or her death (brain-stem/cardiac). According to the World Health Organization, approximately only 0.16% people in India donate their organs after death. Currently, there is a wide gap between patients requiring transplants and organ availability in India. More than a million people are estimated to have end-stage organ failure, but only 3,500 transplants are performed each year. Every day, at least 15 patients die waiting for organs, and every 10 minutes, a new name gets added to the transplant waiting list. The Transplantation of Human Organs Act (THOA), established in 1994, aims to provide a system for the removal, storage, and transplantation of human organs for therapeutic purposes and for the prevention of commercial dealings in human organs. Despite this, organ donation from deceased people remains quite poor. In India, there is a need to promote deceased organ donation, as donation from living persons cannot adequately address the organ requirement of the country and is associated with commercial transaction, which is against the law. Here are some facts that exhibit the reality of organ donation in India:India's organ donation rate is one of the lowest in the world.Every year, 5 lakh people require organ transplants, but these numbers are not met.For 50 thousand people who need a heart transplant , only 339 hearts are available.The present number of kidney transplantations (11,243) is severely deficient to meet the current need of approximately 2 lakh kidneys transplants a year.Annually, 2 lakh corneal donations are required, but only 50 thousand donated corneas are available for transplant. Organ donation rates per milionSource: Union Health Ministry Living Donor Organ Donation: During his life, a person can donate one kidney (the other kidneys capable of maintaining the body functions adequately for the donor), or a part of the liver (the part of the liver will regenerate after a period of time in both the recipient and the donor). This is a voluntary donation, generally by family members of the patient needing a transplant. Living donation ensures that a transplant can be performed at an earlier timepoint than that for deceased donor transplant. It indirectly helps other patients on the deceased donor transplant waiting list by upgrading their number on the list and increasing their chances of a transplant. Potential donors undergo extensive testing pre-operatively and are accepted only if they are found to be healthy for surgery with a good organ quality. All living donor transplants, both domestically and internationally, must be approved by the local hospital authorisation committee or authorisation committees appointed by the Director of Medical Education & Research, Mumbai. According to the law, donors are of the following two types: Near-relatives: Only immediate blood relatives (i.e., grandparents, parents, siblings, children, and grandchildren) and the spouse of the transplant recipient are considered as “near relatives” by THOA. Non-near relatives: Anyone other than the “near relatives” (called as ‘unrelated’ per the law) of the recipient as defined above, including anyone donating due to affection and attachment towards the recipient or for any other special reason. Swap Donation: In cases where the living near-relative donor is incompatible with the recipient, the THOA allows the swapping of donors between two donor/recipient pairs when the donor of the first pair matches with the second recipient and the donor of the second pair matches with the first recipient. For example, if there were two donor/recipient sets, A and B, Donor A’s organ would go to Recipient B, while Donor B’s organ would go to Recipient A. When multiple donor/recipient pairs are used, this type of matching is called a ‘paired organ exchange’. Deceased Donation: When organs are donated after a person’s death, i.e., after the person is deceased, it is called as deceased donation. Transplantable organs and tissues are removed via surgery. Donation can take place after brain death or after cardiac death. The donor’s medical and social history is recorded. The suitability of various organs for transplantation is assessed via blood tests, ultrasonography, echocardiography, bronchoscopy, and sometimes, a biopsy. Suitable organs are offered to the first patients on the waiting list, and the respective retrieval teams coordinate for the surgery. Donation after brain death: Brain death usually happens due to bleeding inside the brain, stroke, severe head injury, or brain tumours. In brain death, the brain is irreversibly damaged; supportive systems, life-saving medicines, and the ventilator continue circulation of blood and the necessary oxygen to internal organs. Patients have no respiratory function, no spontaneous movements, and all reflexes are absent; however, the heart can continue to beat autonomously. Organs such as the heart, lungs, liver, kidneys, pancreas, and small intestine, and the cornea, hand, bone, tendons, cartilage, skin, heart valves, blood vessels, and nerves may be donated after declaration of brain death. Donation after cardiac death: Normally, during death, as we understand it, the heart comes to a stop. There is loss of blood supply and oxygen to the brain and all other organs, leading to severe damage to these in a few minutes; this is called cardiac death. It is much more common than brain death; typically, all deaths at home or in a hospital without life support are cardiac deaths, i.e., natural deaths. In such situations, the internal organs are damaged irreversibly; however, tissues are resilient to such damage for a few hours. Therefore, corneas, heart valves, bones, and skin can be donated. If the cardiac death happens in a hospital under close observation and the patient and family members have consented to organ donation, the liver and kidneys may be donated after cardiac death if the surgery for retrieval of these organs can be done rapidly after death. Consent is an important aspect of any surgical procedure. In India, we follow the concept of ‘informed consent’, i.e., consent must be obtained from the patient or the next of kin for any operative procedure, including organ donation. Opt-in system:The donor can express consent to donate organs after death during their lifetime or any of the relatives of the donor can provide their consent to donate the organs after the death of such a person, if they are the ‘next of kin’. The THOA recognises the authority of a person in lawful possession of the body to provide consent for the donation of organ(s) from the deceased. Opt-out system (‘Presumed consent’ or ‘Implied consent’ system): The state assumes that consent for organ donation has been given by the deceased. Only if the deceased has expressed to the state that he or she does not wish to donate is an exception made. An exception is also made in the case of minors. Doing away with the on-the-spot consent process means that organs can be retrieved without delay to save many lives. Myths regarding organ donation Myth: Organ transplantation is still in the experimental phase of surgery and is possible only in the highly developed western countries. Reality: No, this is not true. Organ transplantation is one of the most remarkable success stories in the history of medical sciences. Currently, almost every organ, except the brain, can be transplanted with very high success rates. Thus, it is no longer an experimental procedure, but a globally accepted method for treating organ failure. Myth: Organ donation is not necessary in India. Reality: No, this is not true. Unofficial statistics from India indicate that over 400 deaths occur every day due to organ failure, i.e., more than one lakh deaths per year. Further, of the 9.5 million people that die in India every year, at least one lakh are believed to be potential donors; however, less than 100 actually become donors. This means that given an average of five organs per donor that could have been transplanted, almost 5 lakh organs are burnt or buried. Considering these facts, organ donation is extremely necessary in India to save countless lives. Myth: Apart from being an altruistic act, my family or I have nothing to gain from organ donation. Reality: No, this is not true. Existing data show that during our life span, the chance of someone requiring an organ transplant is higher than that of someone being a donor. Hence, in case you have the misfortune of suffering from organ failure, your life would depend on an organ donor. Overall, in simple terms, the more organ donors there are, the higher your chances of survival. 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: No, this is not true. The heart has its own pacemaker, which functions independent of the brain. As long as it has oxygen, the heart continues to beat. The heart could beat for a few minutes even if it was removed from the body, placed in a saline solution, and given oxygen. However, this only occurs for a short time period. It is noteworthy that eventually, the heart will stop, despite on the administration of maximum life support machines. Myth: My religion discourages organ donation. Reality: No, this is not true. None of the major religions in the world discourage organ donation. Deemed a very noble act whereby one human can provide life to another, most religions support organ donation. Myth: If I agree to donate my organs, the hospital staff will not work hard to save my life. Reality: No, this is not true. Whenever you go to the hospital, the doctors will prioritise saving your life. You will be treated by a doctor whose specialty most closely matches your particular emergency. The doctor in charge of your care has nothing to do with transplantation. Myth: I am under age 18. I am too young to make this decision. Reality: Legally, this is true. However, it is noteworthy that children, too, need organ transplants; they usually need organs smaller than those an adult can provide Considering this, if you wish to donate your organs, you can express this desire to your parents; accordingly, your parents can provide their consent and authorise your decision knowing that this is what you wanted. Myth: I am too old to donate. Nobody would want my organs. Reality: No, this is not true; there is no defined cutoff 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 not age. Myth: When you are waiting for a transplant, your financial or celebrity status is as important as your medical status. Reality: No, this is not true; your income and social status have no bearing when determining how organs are allocated. 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. Myth: If you agree to donate your organs, your family will be charged for the costs. Reality: No, this is not true; the donor’s family does not bear any costs for organ and/or tissue donation. Myth: Your history of medical illness means your organs or tissues are unfit for donation. Reality: No, this is not true. Even if you have a history of medical illness, including diseases such as diabetes, hypertension, and even cancer, your ability to donate organs or tissues will be determined at the time of death. Thus, if organ donation is important to you, make your wishes known and rest assured that the medical professionals will review your medical and social history to determine your suitability for organ donation. Myth: “I am an organ recipient; can I be a donor?” Reality: Organ recipients usually cannot be tissue donors because they are administered immunosuppressive drugs. The medical team will decide the eligibility for organ donation. Myth: “If I register to donate my eyes only, will they take any other healthy organs as well?” Reality: No, you can specify which organs you want to donate. Your wishes will always be complied with. Myth: Organ/tissue removal affects cremation/burial arrangements or disfigures the body. Reality: No, this is not true; the removal of organs or tissues will not interfere with customary funeral or burial arrangements. The appearance of the body is not altered either. A highly skilled surgical transplant team will remove the organs and tissues and stitch up the body carefully; hence, no disfigurement occurs. To prevent disfigurement in the event of a hand donation, artificial limbs are connected to the donor’s torso. The body can be viewed as in any case of death; cremation/burial is not affected in any way. Myth: If I donate my organs, it will cause delays to my funeral arrangements. Reality: Yes, there is a possibility of this occurring. However, given the altruistic nature of the donation, families usually accept this and consider it a common part of the organ donation process. Myth: It is enough if I have a donor card. Reality: No, just having an organ donor card is not enough. You need to carry this card with you at all times and also inform your relatives about your wishes so that they honour them when required. Myth: Once I become an organ donor, I can never change my mind. Reality: This is not true; you always have the option to change your mind. You can withdraw your registration, tear up your organ donor card, and let your family know that you have changed your mind. Pledge for organ donation By donating organs after death, one can save or improve as many as 50 lives. Many families have stated that knowing that their loved one helped save other lives helped them cope with their loss.Pledging for organ donation is a simple procedure. In India, one can register for organ donation by visiting the National Organ & Tissue Transplant Organisation (NOTTO) website or their respective state organ donation authorising centres (please see the links below) and filling up the registration form. NOTTO: National Organ and Tissue Transplant Organization (https://notto.mohfw.gov.in/links.htm)ROTTO-SOTTO: Regional/state Organ and Tissue Transplant Organization (https://www.rottosottokem.in)ZTCC: Zonal Transplant Coordination Centre (https://www.ztccmumbai.org)The interested donors are required to fill out their credentials in the organ donation pledge form available on the NOTTO website and submit it. Finally, a pledge certificate is generated. Please follow these 5 steps to register your pledge to donate organs: Step 1 – Go to the relevant website (https://notto.mohfw.gov.in/links.htm); click on ‘Register for Pledge’. Step 2 – Authenticate using Aadhar details; enter the OTP. Step 3 – Provide all the necessary details in the form; choose the organ(s)/tissue(s) you wish to donate. Step 4 – E-sign using Aadhar. Step 5 – Download your pledge certificate. It is extremely important to discuss the decision with one’s family or next of kin because in case of an emergency or untoward incident, the family will be the first to be contacted. Only after seeking their permission can the doctors go ahead with retrieving the organs.In the past when the families have not been aware and needed to be counselled on the wishes of their deceased relative, a lot of precious time, and sometimes, the opportunity to donate, was lost, as the organs became unusable. Thus, in organ donation, time is of prime importance.