About Organ Donation

What is Organ & Tissue Donation?

Organ donation is the process of Retrieving or Procuring an organ or tissue from a living or deceased person, called a Donor. The process of recovering organs is called Retrieval. This organ is transplanted into the Recipient who is suffering from organ failure and needs an organ replacement to survive.

Medical Science has made tremendous progress in recent times in the field of organ donation and transplantation, with organ donation from one person capable of saving up to 9 lives and improving the lives of many others.

However, due to the prevalence of myths surrounding organ donation, and the lack of awareness about the topic in India, a majority of people do not take up this noble cause for the benefit of others.

Brain death is crucial to the process of organ retrieval and transplantation. That’s why it’s important to understand what exactly it is. It is a legal form of death. It’s just that no one has bothered to tell us about it, or explain what it is.

Which Organs & Tissues Can Be Donated?

Let’s take a closer look at the different organs that can be donated by a person after death and while the person is still alive. There are eight organs that can be donated and transplanted:

  1. Kidneys: Both kidneys can be donated by a deceased donor. The functioning lifespan of a transplanted kidney is about nine years. Of all organs, kidneys are the most in demand and the most frequently donated. Most diseases that affect the kidneys affect both at the same time. A living donor can easily donate one kidney to someone and function well for the rest of their lives.
  2. Liver: The liver is an important organ with primary functions of bile production & excretion; excretion of bilirubin, cholesterol, hormones, and drugs; metabolism of fats, proteins and carbohydrates; enzyme activation; storage of glycogen, vitamins and minerals; synthesis of plasma proteins; blood detoxification and purification. The liver is the only organ that can grow cells to regenerate itself. A deceased donor liver can be split into two and transplanted into two different people. A living donor can have a portion of the liver removed, and the remaining portion will regenerate to almost its full previous size.
  3. Heart: A heart is a muscular organ which pumps blood through the human body. In the course of an average lifetime, heart will beat for about 2.5 billion times and keep the blood running in our body. Once removed from the donor’s body, a heart can only survive for about four hours.
  4. Lungs: Single or double-lung transplants can be performed from deceased donors. Additionally, living donors can donate a single lobe from the lungs, though it will not regenerate.
  5. Pancreas: A deceased donor pancreas can be transplanted into an ailing patient. A living donor can also donate a portion of the pancreas and still retain pancreas functionality.
  6. Intestine: After death, a donor can donate their intestine. Although quite rare, a living donor can donate a portion of the intestine.

In addition to organs, you can also donate tissues such as corneas, skin, bones, ligaments, heart valves etc.

Which Tissues Can Be Donated?

Tissues are composed of layers of cells that function together to serve a specific purpose. They must be donated within 6 hours of death.

  1. Cornea: One of the most commonly transplanted tissues each year is the cornea. It is a transparent covering over the eye and is the eye’s primary focusing component. A cornea transplant restores sight to recipients who suffer from corneal blindness and who have been blinded by an accident, infection or disease. Corneas can be transplanted whole or in parts and require no anti-rejection drugs in the recipient. Corneas from a 75-year-old donor are just as effective as younger corneas.
  2. Bones: Donated bones can be used to replace cancerous bones in the arm or leg in lieu of amputation.
  3. Skin: Among its many uses, skin can be used as dressing material for burn victims or for post-mastectomy breast reconstruction
  4. Veins: Donated veins are used in cardiac bypass surgery.

Other donated tissues include tendons, ligaments, muscles, heart valves and cartilage.

Types of Organ Donations

There are two types of organ donations – Living Organ Donations & Deceased Organ Donations.

Living Organ Donation: This is when you retrieve an organ from a healthy living person and transplant it into the body of someone who is suffering from end-stage organ failure. This is commonly done in the case of a liver or a kidney failure (because the liver can grow back to its normal size and a donor can survive on one kidney).Living donors are classified as either a near relative or a distant relative/friends etc.

A near-relative is spouse, son/daughter, brother/sister, parents, grandparents and grandchildren.

Those other than near-relative can be distant relatives and friends who will need the permission of the State Authorization Committee to donate organs. If the hospital refuses to entertain such cases, the patient may send a legal notice to the hospital for not following the Transplant Act.

Deceased Organ Donation: When we talk about pledging your organs for donation or about organ donation after death, we are talking about Deceased Organ Donation. This is an organ donation from a person who has been declared brain stem dead by a team of authorized doctors at a hospital. A person is said to be brain stem dead when there is an irreversible loss of consciousness, absence of brain stem reflexes and irreversible loss of the capacity to breathe.

A lot of people think that whenever and however they die, their organs can be donated. That is not true. In India, it is only in the case of Brain stem death that your organs can be donated.

Donation after cardiac death is common in the West, but in India it is rare for donations to take place after cardiac death. Although it is possible for organs such as the liver and the kidney to be easily donated from a living donor to a recipient, we should work towards an environment where everyone donates their organs after their deaths (if they can), so no living person should have to donate an organ to another.

What is involved in the process of Organ Donation?

Living Donation Process

  1. The donor undergoes the medical tests and evaluations to check his or her medical compatibility with the recipient.
  2. The donor’s medical compatibility is confirmed by a doctor, only after which a transplant may take place.
  3. The donor’s organs are surgically retrieved and stored in special chemical solutions until they can be transplanted.
  4. The donor’s body is surgically closed.
  5. The donor may have to stay under medical care for a few days after organ retrieval has occurred.

Deceased Donation Process

  1. The donor, who is a victim of a fatal injury to the head, or had CVA or Brain Haemorrage is declared brain stem dead by a board of medical experts in a hospital.
  2. Consent from the donor’s family is obtained before the process of organ procurement is carried out. In the interim, the donor’s maintenance is managed by Intensivists till the retrieval of the organs.
  3. A suitable recipient(s) for the organ(s) is identified from the waiting list and notified.
  4. Once retrieval has taken place, the donor’s body is released to the family.
Law Governing Organ Donation In India

The primary legislation related to organ donation and transplantation in India, Transplantation of Human Organs & Tissues Act, was passed in 1994 and is aimed at regulation of removal, storage and transplantation of human organs for therapeutic purposes and for prevention of commercial dealings in human organs.

Some of the main provisions of the Act are as follows:

  • Brain stem death identified as a form of death. Process and criteria for brain stem death certification defined
  • Allows transplantation of human organs and tissues from living donors and cadavers (after cardiac or brain stem death).
  • Regulatory and advisory bodies for monitoring transplantation activity and their constitution defined.

For more information on the Transplant Law in India read our Transplant Law Made Easy section: laws-made-easy

What is Brain Stem Death and how is it related to organ donation?

A brain stem death results from a severe irreversible injury to the brain or haemorrhage which causes all the brain activity to stop. All areas of the brain are damaged and no longer function, due to which a person cannot sustain his/her own life, but vital body functions may be maintained by an artificial support system. This maintains circulation to vital organs long enough to facilitate organ donation. Patients classified as brain stem dead can have their organs surgically removed for organ donation.

A Brain stem Dead person has absolutely no chance of recovering. Brain stem death is a form of death and is irreversible. To know more about Brain Stem Death, please visit the following link to a short clip and an easy to understand movie giving insights on what is brain stem death Click here

Once brain stem death has been declared, the person is dead but their organs are still alive because they have been kept alive through artificial means. This means that if a person dies at home or anywhere else, and their heart stops beating, they cannot donate their vital organs, because the organs of a person who has died a cardiac death will die within minutes of the heart stopping. Therefore, the only time you can donate your vital organs is if you are in hospital and have been declared brain stem dead.

In case of a cardiac death it is possible to donate your corneas and tissues such as bones, skin, veins, blood stem cells, blood and platelets, tendons, ligaments, heart valves, cartilage and even your body. While the incidence of brain stem death is obviously less common than cardiac death, it is important to remember that organ donations will take place only if everyone is aware about when and how they can donate organs.

Procedures for Brain Stem Death Declaration in India

Let’s take a closer look at the different organs that can be donated by a person after death and while the person is still alive. There are eight organs that can be donated and transplanted:

Panel of 4 doctors need to declare the brain stem death twice in a span of 6 hours. Two of these doctors must be from a panel approved by the government. This panel includes:

  1. Registered Medical Practitioner in charge of the Hospital where brain stem death has occurred.
  2. Registered Medical Practitioner nominated from the panel of names sent by the hospitals and approved by the Appropriate Authority.
  3. Neurologist/Neuro-Surgeon (where Neurologist/Neurosurgeon is not available, any Surgeon or Physician and Anaesthetist or Intensivist, nominated by Medical Administrator In-charge from the panel of names sent by the hospital and approved by the Appropriate Authority shall be included).
  4. Registered medical practitioner treating the aforesaid deceased person. The same is recorded on Form 10 of the THO Act 2014. The family’s consent is obtained on Form 8. Healthy organs are transplanted from the body of the patient as soon as possible.

The certifying clinicians must have no interest or benefit in any way from transplantation of cadaver donor organs. The legal time of death in these circumstances is taken as the second set of brain stem death tests. The certification should be done on laid out forms as per the act. The medical director or medical superintendent of the hospital should finally countercheck and sign the form. It is only after these formalities have been completed, should organs be retrieved.

What happens once Brain Stem Death is Declared?

Organ donations require prior consent from the donor’s family. In India, according to the Transplantation of Human Organs & Tissues Act 1994, the next of kin of the patient will decide whether to donate their organs and tissues.

Once a person is declared brain stem dead, the transplant coordinator of the hospital will counsel the family and give them the option of donating organs and tissues. The family may or may not agree and can, till the last minute before retrieval, change their mind about donating. It has been noted that a lot of families, even in the face of devastating loss, agree to organ donation to save the lives of others. For them, it is the only good thing that could come out of the death of a loved one, and for this reason alone, it is everyone’s absolute right to be asked if they want to donate.

Request for Organ Donations & Counselling of Families

Usually the organ donation request is made in the time interval between the diagnosis of brain stem death and cardiac death. According to law, doctors are required to take the family members’ consent before retrieving organs, even if the brain stem dead patient has pledged his or her organs. The doctor on duty is required by law to ask for the organs from the relative in case of brain stem death.

Brain stem death is relatively a new concept and making request for organ donation in these circumstances can be an extremely difficult task for a doctor or a nurse to undertake. If the deceased carries a Donor Card (a card the size of a credit card expressing their desire about organ donation) the task of asking for organ donation becomes easier.

If the relatives are agreeable, the process of organ donation is under taken and vital organs like heart, lungs, liver, pancreas and kidneys are removed for transplantation. The process of organ donation and transplantation requires co-ordination between different teams operating almost simultaneously and sometimes in different locations. It may require getting surgeons from different specialties together for both donor and recipient surgery.

Police NOC & Post-mortem in Medico-Legal Cases

In medico legal cases, to proceed with organ donation, police NOC is required. And the same must be intimated to the designated forensic expert responsible for conducting the post-mortem. The forensic expert can be present during the retrieval of the organs and conduct the post-mortem simultaneously or the retrieving doctor makes notes of the retrieved organs which will form a part of the post-mortem report, and the body is sent to the forensic expert for completion of post-mortem formalities.

How long can an organ survive inside and outside the body in a Deceased Organ Donation?

A deceased organ donor is kept on a ventilator after he or she has been declared brain-dead until the organs can be retrieved. A Brain stem Dead person’s organs may stay alive for a varied time period; this period may range from a couple of days to a couple of weeks. The longer it takes to retrieve them, the more they will deteriorate inside the body. Therefore, the entire process has to be quick, and families need to be able to make their decision soon.

Once the organs have been retrieved, they have a very short shelf-life and need to be transplanted immediately or at the earliest.

Heart & Lungs 4-6 hours
Liver 6-12 hours
Kidneys 24-48 hours
Intestine 6 hours
Pancreas 6 hours

No payment is made to the donor family, and the recipient is not charged for the organs though the recipient has to pay the transplantation costs of the hospital. As soon as the family gives consent for organ donation, all billing for the donor family thereafter stops from that time and is taken care of by the hospital.

Tests Establishing Brain Stem Death

The absence of brain stem function is documented by conducting the following tests:

  • Absence of Pupillary reflex response to light
  • Absence of Corneal reflexes
  • Absence of Vestibulo-ocular reflex
  • Absence of Cranial nerve response to pain
  • Absence of Gag and Cough reflexes
  • Apnoea Test

Pupillary Reflexes: To check for absent pupillary response to light, bright pen torchlight should be used in a darkened room. It should be made sure that no eye drops to dilate the pupils have been used in the four hours previously. The pupils may not be necessarily fixed and dilated in the brainstem dead patients; however there should be no pupillary response to light.

Corneal Reflexes: Moist cotton tipped swab should be used and firm pressure should be applied to the cornea without damaging it.
Vestibulo-Ocular Reflexes: This testing involves instilling 20ml of ice-cold water into the external auditory canal and looking at eyeball movements of either eye for about a minute. No eyeball movement indicates absence of reflex. Presence of ruptured eardrums or discharge from the ear prevents this test from being performed.

Gag and Cough Reflexes: This requires temporary disconnection from the ventilator. A cotton tipped swab can be used to stimulate the posterior pharynx to look for a response. Experienced ICU staff usually notice a progressive loss of response during the evolution of brainstem death when performing the routine suction of airways and oropharynx.

Grimacing of the face to a painful stimulation: This is a normal response in a normal condition and is absent in brainstem death situation. A firm supra-orbital pressure (trigeminal nerve) should be used to check this cranial reflex. Pin pricks should not be used to test this response.

Dolls Head Eye Phenomenon (Testing for oculo-cephalic reflex): This is one test that can be done to know if the brainstem is still alive. If this test is positive then other tests to establish brain stem death can be postponed. One may need to disconnect the patient from the ventilator for 15 to 20 second to perform this test. To do this test the physician holds the patients head between his hands and moves the head from side to side through 180 degrees. The clinician should hold the head to one side for 3 to 4 seconds and look at the simultaneous eye movement to that side. A similar movement is done to the opposite side and eye movement is noticed. In a normal fully alert individual the eyes move with the head and there is only a very fractional delay. In the case of Brain Stem Death, the eyes will not move with the head.

Apnoea Test: This is the last test done after all tests above are positive. The aim of apnoea test is to establish death of the respiratory centre in the brain stem. It is done to check whether there is any spontaneous breathing or not. If the patient cannot breathe on his/her own, after all other tests are positive then they can be declared Brain Stem Dead.

Organ Allocation Process in India

Health is a State subject in India and therefore each state has its own Nodal Agency in charge of the allocation of human organs. Each Nodal Agency is connected to all the Transplant Hospitals in the State. All hospitals are required to have their own website linked to the State Nodal Agency so that the hospital waiting lists for all organs is automatically linked to the State Nodal Agency. State Nodal Agency needs to be linked to the concerned Regional Organ & Tissue Transplant Organisation (ROTTO) and that ROTTO lists in turn are to be linked to the National Organ & Tissue Transplant Organisation (NOTTO). This will form the National Waiting-List Registry.

In the event of a brain stem death, once the family has agreed to organ donation, the hospital informs its own Nodal Officer in charge of organ donation about the death and the willingness of the family to donate. Of the paired organs such as kidney and lungs, one each is used by the hospital for its own patients on the waiting list and the other is given to the common pool and will be allocated by the Nodal Agency to one of the patients in the other hospitals.

The rest of the organs (heart, liver, intestines, and pancreas) can be used by the donor hospital if the hospital is registered to perform those particular transplants and if they have patients on the waiting list. If they do not, then the organs are also given to the common pool and the Nodal Agency will decide their distribution. It is extremely rare to have all recipients in the same hospital, and the organs are usually put in the common pool and allocated accordingly.

As per the government’s allocation policy, if organs are retrieved from a government hospital and put into the common pool, then they will be offered to a government hospital first and then to a private hospital in case there are no takers in the government hospital. If the organs are retrieved from a private hospital, then they will be offered to a private hospital first.

In the event of a trans-state allocation, the concerned ROTTO as well as NOTTO will be informed and they will oversee the allocation of the organs. For policy related further details, please visit notto.gov

What potential organ recipients need to know

It is important for recipients, who are in need of a transplant, to be aware of what is the entire process.

  1. The recipient is identified by a hospital as someone who needs an organ/tissue transplant.
  2. The recipient’s medical profile and details are verified by the Transplant Coordinator and the recipient undergoes the required tests.
  3. Once the recipient is deemed fit for transplant, he/she is placed on a waiting list of the hospital in which they are seeking treatment. This will be a Hospital which has a license to conduct transplants. They will then wait until they are called by the Hospital in case an organ becomes available. A suitable donor is identified based on medical compatibility with the recipient.

Anyone looking for Transplant Hospitals in India can visit our Pan-India Transplant Guide for more information on the following link www.organindia.org/transplant-guide-directory

Recipients should keep a few things in mind when awaiting a transplant. They should fully comply with the hospital’s requests for information; lack of coordination or hesitance to share information with the hospital may delay the identification of a donor. A positive attitude will also help recipients endure the time they spend on the waiting list.

Unfortunately, the waiting time is long in India due to lack of deceased organ donors. This time-period may vary, from a few months to a few years.

Pledging your organs and becoming an organ donor

If you want to pledge your organs, you can fill out this form on our Website Click here

An important point to note once you register as a donor is that your donor card is not a legal entity or an official document. It is merely an expression of your wish to be a donor. The card that we will send you does not carry any legal weight. But do keep it with you and make sure you let all your friends and family know about your intended choice.

Should Organ Donors Talk to Their Families?

Yes! The most important thing that an organ donor must do, after he or she has pledged to become a donor, is to discuss the decision with his or her family. Although the decision is personal, organ and tissue donation cannot take place without the consent of the donor’s family. Donors are advised to help their families understand the motive behind their decisions. For instance, if they have been inspired by another donor’s or recipient’s story they could narrate this story to their family so that they understand the sentiment behind this decision. This will make the family more likely to go along with the donor’s decision, if need arises.

In India, legally, it is the next of kin of the donor who will decide whether to donate their organs or not. Even if you have pledged your organs, no donation will happen unless the next of kin signs the forms. Therefore, when you do register anywhere to be an organ donor, it’s very important that you discuss your wish to donate with your family. This is to enable your family to carry out your wishes in case the need arises.

Can anyone donate organs? Are there any conditions under which organ donation is not possible?

Generally, there is no bar to organ donation and one or the other organ or tissues can be donated at any age. The only people who cannot donate organs are those have/had cancer, HIV or disease-causing bacteria in the bloodstream or body tissues. However even this is not a hard and fast rule. There have been instances where one HIV positive person has donated to another HIV positive patient.

However, it is important to do some essential virology screening before accepting the donor. All potential donors will require a virology screen to prevent possible transmission of disease from donor to the recipient. The next of kin should be made aware that this is necessary; if there are any objections by the doctors to the donation, these should be respected.

Decisions about an organ’s usability are made at the donor’s time of death or, in the case of living donors, during the pre-transplant screening stage.

Situation in India & Data

Unfortunately, mostly due to unawareness and prejudices, there is a huge shortage of organs that are needed for transplants. It has been seen in umpteen situations that relatives are hesitant and unwilling to donate the organs of their loved ones who have been declared brain dead.

Normally the transplant coordinator will approach the relatives with information about organ donation and explain that even in their time of loss, they can help another person to live. It is tough for the relatives at this point to come to a decision especially if they are not familiar with the concept of organ donation. This is the main reason why it is important for the public to know about organ donation, before they are suddenly faced with the possibility at some point in their lives.

It is estimated that the total number of brain stem deaths due to accidents in India is nearly 1.5 lakhs annually. Other causes of brain stem death would potentially add many more numbers. However, our organ donation rate is 0.86 per million population. The total number of deceased donors in India in 2017 was only 905.

Contrast that to the demand for organs. There is a need of approximately 5 lakh organs annually. Barely 2-3 percent of the demand is met, and many people die of organ failure every year across India.

Government Agencies

NOTTO – National Organ and Tissue Transplant Organization

The National Organ and Tissue Transplant Organization (NOTTO) is a National level organization set up under Directorate General of Health Services, Ministry of Health and Family Welfare, Government of India, located at 4th and 5th Floor of Institute of Pathology (ICMR) Building in Safdarjung Hospital New Delhi. The establishment of NOTTO has been mandated as per the Transplantation of Human Organs (Amendment) Act 2011.

NOTTO functions as the apex centre for All India activities of coordination and networking for procurement and distribution of Organs and Tissues and registry of Organs and Tissues Donation and Transplantation in the country. In addition to its national role, NOTTO is also the nodal networking agency for Delhi and the National Capital Region, and network for Procurement Allocation and Distribution of Organs and Tissues in Delhi and the National Capital Region.

ROTTO – Regional Organ and Tissue Transplant Organisation

The Regional Organ & Tissue Transplant Organisation (ROTTO) is the regional government organisation. There are five ROTTOs in India. They function as separate regional branches that ensure protocol amongst the state organisations enlisted under each of them. They are all based in a Government Hospital in the region. Each ROTTO manages about 5-7 States currently and is responsible for activities of coordination as well as networking for procurement, distribution and transplantation of organs and tissues between their respective State Organisations.