FAQ on Organ/ Body/ Brain/ Eye Donation

This post provides basic information on organ/ body/ brain/ eye donation using an FAQ format, and includes links to sites with more information. It contains general information for the convenience of readers, and is NOT provided as expert/ authoritative advice, so please consult appropriate authorities as required. Decisions regarding donations are deeply personal, and this post does not attempt to advocate donations or enroll potential donors. I have no intention to persuade you about the merits or demerits of donation. Also, this post is written for the Indian context.

Why this page: After my mother died and I donated her brain, eyes and body, many folks contacted me with queries that indicated conceptual confusions about types of donations and about the practical aspects of donating. I looked around for several months for a website I could refer them to, but most sites focused only on some types of donations or were geared towards enrollments, and did not discuss practical issues/ procedures applicable in India. So I decided to create this post.

What is body donation?

Body donation is the donation of the whole body after death, for medical research and education. (See wikipedia page: http://en.wikipedia.org/wiki/Body_donation)

Usually, this is done at a medical college (teaching hospital) and the body is used by medical students to study anatomy. It is also possible to donate a body/ some specific organs to specialized research institutes that may want to study a specific medical condition.

Body donation is different from organ donation.

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What is organ donation (and/ or organ transplantation)?

Organ donation is donating an organ for use in organ transplantation (to replace a damaged/ diseased/ missing organ in a living person). The organ is removed from someone (live donor or deceased donor) and then transplanted in the recipient. The process involves complicated surgery and things like matching the donor and recepient, and medications to ensure the transplanted organ is not rejected. Read about organ transplant here: http://en.wikipedia.org/wiki/Organ_transplant

An organ can only be transplanted if it has not started decaying by the time it is transplanted.

Not all organs can be transplanted. Examples of currently feasible organ transplantations are: Kidneys, heart, pancreas, liver, lungs. Examples of organs not currently transplanted are: Brain (For updates and complete list, one possible source is the wikipedia page: http://en.wikipedia.org/wiki/Organ_transplant)

There are two categories of donors: Live donors and deceased donors.

“Live donors” are persons who donate (1) tissue that can be renewed by the donor’s body, and/ or (2) organs that the donor can live without because other organs in the donor’s body will take over the work of the removed organ. So since we have two kidneys, one kidney can be donated for transplant if the other kidney is considered good enough to take over the full workload. The live donor remains alive after the donation. Donations by live donors are feasible only for some types of organs. Countries have very strict laws on live organ donation to avoid organ trafficking. Examples of organ transplants possible from live donors are kidney and liver. Examples of organ transplants not done using live donors are heart and hand.

“Deceased donors” are persons who have been declared brain dead but are kept on life support till the organ(s) is removed. That is, the patients have been pronounced brain dead based on well-defined of neurologic criteria and are kept on life support so that their blood continues to circulate. This prevents the organs from deteriorating. Once the required organs are removed for transplant, life support is ended.

Organ donation is not the same as “tissue donation.” (though many discussions on organ donation sites combine the two)

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What is tissue donation (including eye donation)?

The term “tissue donation” refers to tissue that is removed from someone and placed in another person.

Examples of tissue that can be donated are: bones, skin, eyes, heart valves, tendons, cartilage.

Tissue can be used from a dead person for such tissue donation if it is removed within a short interval after death. See an explanation here: http://www.nhsbt.nhs.uk/tissuedonation/about/

Eye donation, the best known form of tissue donation, can be done by calling eye bank doctors at home (or at the hospital). After the removal, the eyelids are closed and the face looks placid–there is no disfiguration. The body can then be cremated/ buried etc., or used for body donation.

[Note that the removed tissue (including eye) may also be used for study/ research]

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What is brain donation?

Brain donation is donating the brain of a dead person to the brain bank for the purpose of study/ research and involves removing the brain and preparing it in a way in which it can be studied. India has only one brain bank; it is called the Human Brain Tissue Repository and is at the Dept of Neuropathology, NIMHANS Bangalore.

The brain is removed from the donor after death, within a few hours (before the brain begins to deteriorate and becomes unsuitable for study). A pathologist makes an incision in the skull, removes the brain, and then stitches back the skin. Apparent disfigurement is minimal. The body is then returned to the family, who may take it for cremation/ burial etc., or donate the body for research.

The donated brain is used to educate people on the brain/ studied by researchers working on brain-related problems, for example ataxia, Parkinson, and dementias like Alzheimer’s.

The website of the department of neuropathology, NIMHANS is here. For queries, you can contact Dr. Shankar (shankar@nimhans.kar.nic.in)/ Dr. Anita (amahadevan@nimhans.kar.nic.in), Human Brain Tissue Repository, Dept of Neuropathology, NIMHANS, Hosur Road, Bangalore, INDIA 560029, Phone: 91-80-26995130, 91-80-26563357

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Some people say organ donation can be done after death, some people say it is after brain death. Is brain death the same as death?

Organ donation is possible after brain death, but not possible after the more typical type of death (which most of us call “death”).

Death, as most of us understand it, occurs when a person’s heart stops beating and no longer supplies blood to the entire body. While the terms employed by various agencies/ bodies may differ, simply put the person is dead enough for the attending physician to certify the death. Such death could occur at home or in a hospital, or in an accident/ homicide. Some people refer to this as “cardiac death”, but the terminology is not standard.

The key part of such “death”, when it comes to understanding donation, is that blood is no longer circulating in the body and so the organs start deteriorating and cannot be used for organ transplant. Tissue, on the other hand, can still be used after such death if removed within a few hours (so the eyes can be donated). And the body and its parts (like the brain) as such can be used for medical study and research.

Brain death is a medically defined condition where there is an irreversible end of all brain activity. It is a special situation where certain neurological criteria are used to determine whether the brain and spinal cord are damaged sufficiently to call the person dead. In brain death, the person has no chance of recovering as the brain is irreversibly damaged and dead. However, the blood is still circulating and so the organs do not start deteriorating and can be removed and transplanted.

India has legislation that defines the criteria for brain death, how it can be certified and by whom. It recognizes brain death as legal death. A brain-dead person’s organs can be removed for transplant if the next-of-kin gives consent. While the law in India accepts brain death as equal to death, family members may have some difficulty accepting brain death as being the same as death because they may see the person’s heart beating.

You can read India’s Transplantation of Human Organs Act, 1994, here: http://zcck.in/legal.html. A general discussion on brain death is available here: http://en.wikipedia.org/wiki/Brain_Death

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I want to donate my organs for transplantation after I die

Organ donation after death is only possible in case of a person being certified as brain dead. If you are declared brain dead, and, if your next-of-kin consents, then your organs (like liver, kidney, heart, pancreas, lung, etc.) will be evaluated for possible transplants. There is a strict procedure and legislation for declaring brain death and for deciding who shall receive the donated organs. Committees have been set up in states to handle enrolling persons who need transplants and to allocate organs available from brain-dead donors. Examples of zonal committees: Zonal Coordination Committee of Karnataka (see their Q&A at http://zcck.in/faq.html and http://zcck.in/organ.html ) and Zonal Transplant Coordination Centre, Mumbai (http://ztccmumbai.org/).

In case you die in the more typical way, where your heart stops beating, your organs cannot be donated. However, your tissue can be donated (eyes, bones, skin, cartilage, heart valves, etc.) and used for another person. Also, your body and brain can be donated for study. These body/ tissue donations are possible only if done within the prescribed time frame, and if the next-of-kin gives consent.

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What is the procedure for donation?

There are broadly two components:

1> Ensuring that relatives and others know of your desire to donate (organs/ tissue/ body, whatever you want) and also register in any schemes you want to reinforce this commitment

2> The actual donation, which will happen after your death/ brain death. The donation is done by the next-of-kin who will have to sign the required consent forms

Please note that enrolling for donation does not ensure that donation will happen.

Also, donation can be done in most situations even without enrollment if the relatives are willing and sign the consent forms.

For typical death (where the blood circulation stops), donation can only take place after death is certified by a doctor. As such death may happen at a variety of venues, persons who are keen on donating body/ brain/ tissue need to locate a suitable doctor and obtain the death certificate in a limited timeframe available so that the body does not decompose and remains usable for the donation.

For organ donation, donation is only possible if the criteria for judging and certifying brain death have been followed. Persons who are certified as brain dead are already in hospitals and under care, and so the doctors are already involved; they will guide the family/ relatives through the process. In fact, they are likely to request the family to consider organ donation and will do the required counseling.

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I am very confused about death certificates for normal death, and the procedures around them.

The term “death certificate” is commonly used for two different types of certificates, which leads to confusion. For the purpose of this section, we shall give them two different names, “doctor’s death certificate” and “municipal death certificate“. (This is not standard terminology, but I am using it here to make the discussion less confusing) Here’s a rough understanding (please find out specific details as applicable to your state/ city):

When a person dies, a doctor has to check that the person is indeed dead and also certify the cause of death. The doctor, in effect, documents details such as the name and approximate age of the person, the address and other identity details, the date and time of death, and the likely cause (doctors are supposed to know the required format). The doctor signs this document and includes appropriate credentials, such as registration number with the medical council. This is a very important document and is necessary for all future actions related to the body’s disposal, such as moving the body to a mortuary/ cremating/ burying/ donating the body. (Please note that copies of the doctor’s death certificate will be required at multiple places, so the original should be kept intact.)

The doctor’s death certificate required for proceeding with donation is the same as the death certificate that is used for typical ways people dispose bodies, e.g., cremation, burial, etc.

One question that families have is which doctor will give this certificate. Usually, the attending physician gives the certificate, as he/ she knows the medical history of the person who has died, and is confident enough to issue a certificate. This poses a problem when the person dies suddenly at home, and the person may not have been under a doctor’s care. Or maybe the attending physician is unwilling/ unable to come home for checking the person and issuing the certificate. Typically people do manage to get a doctor who is familiar enough with the situation and willing to provide a certificate, but it is not always easy and may take time.

In case of tissue (like eye) / brain/ body donation, we need to get the doctor’s death certificate fast because the process of donation needs to be started before decay makes the tissues/ body unusable for donation. Getting the certificate is even more difficult if the person dies at night because the family has to get the doctor to come home at the earliest and it is night. It may be easier to arrange a doctor’s home visit if the person is enrolled in a home nursing/ doctor-on-wheels type of service. If keen on donation, families should discuss the possible need for home visits in advance with the physician who knows the case history.

One common mistake people make is assuming that the doctors who are accepting the eye/ body donation will certify the death. For example, they may assume that the eye bank doctors will come home and give the death certificate because they are doctors, and should be able to check for death. But that is not so. The eye bank doctors will not give the death certificate, nor will the doctors accepting other tissue or the brain or the body.

Another mistake is assuming that if the dead person is taken to a hospital, the hospital will issue the doctor’s death certificate. But when a person is brought dead to a hospital, the person is declared “dead on arrival” and, from what I understand, the hospital is obliged to notify the police and perform an autopsy to determine the cause of death. This delays things. I am not sure whether, with such procedures getting invoked, donation would be possible :( Please find out the procedures applicable in your location and don’t assume that taking a dead person to a hospital will get you the required death certificate easily.

Note that the death certificate given by the doctor immediately after death (which, in this section, we call the doctor’s death certificate) is different from the “death certificate” required for processing inheritance (e.g., banks, property, insurance, etc.) (which, in this section, we call the municipal death certificate)

Every death has to be registered with the municipal authorities using their formal procedure. They issue a formal certificate (and “original” copies of it) after registering the death, and this formal death certificate (what we have called the municipal death certificate) is what is used for other processing. It is important to know that the documents required by the authorities for registering the death include documents issued/ signed by the doctor who gave the first death certificate. In case of body donation, they include the body receipt certificate issued by the hospital; in case of cremation/ burial, the crematorium/ burial ground will provide the required documentation as suitable.

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What is the registration/ death certificate issue procedure that the municipal authorities use?

You will need to find out the applicable procedure from your local authority’s office. Keep in mind that the death has to be registered within a certain number of days. The authorities will provide the prescribed formats that you will need to get filled and signed, and also list the required documents to be attached. For example, the doctor who checked for death and gave you the doctor’s death certificate (see earlier question) may have to provide some information in the prescribed format to the authorities.

If the body has been donated, the hospital that accepts the body will have to provide a “body receipt” certificate. If you have donated eyes/ brain/ other tissue, but not the body–that is, you have used cremation/ burial/ other traditional methods for the body disposal, then the documents you use for the municipal death certificate are the typical set of documents.

There may also be other formalities. Procedures vary from place to place, and also keep changing. However, keep in mind that you may need more documents/ undertakings from the doctor who checked the death, and you will need a body receipt certificate or equivalent if you are donating the body.

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I guess my doctor will tell me what I need to do for all this.

Yes, that may be so. Some doctors are informed and helpful.

Unfortunately though, many doctors are unfamiliar with tissue/ body donation procedures, or may even be misinformed about some things. Many, for example, don’t know the criteria for eye donations, and make assumptions about it. Many also don’t know enough about the procedural details.

It is better to be familiar with the procedures beforehand. You can contact the organizations that accept the donations, like eye banks, anatomy departments of medical teaching hospitals, etc. You can consider enrolling in their donor programs if interested.

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If the death takes place in a hospital, they’ll handle all this donation business if we ask them, right?

Some hospitals are aware of and supportive of donations, but you cannot assume this will always be true. As donations are not common, the hospital staff may not know the procedure, or may see it as additional work. The amount of support you get will depend on the hospital and on the staff on duty. Please note that many hospitals may not have a system for donation, so they have to direct you to another hospital.

So if I want everything donated, in what order do I go about it?

In case of brain death, the organs and tissue will be donated first, and what remains can be used for body donation if suitable.

In typical death cases, the eyes/ brain are donated first, and the body can be then donated.

Every donation will require the doctor’s death certificate and the consent form signed by the next-of-kin, and after every donation, the organization accepting the donation will issue a certificate about what was donated.

At the stage when the body is donated (where the whole body is being donated), the family now no longer has the body with them, and the receiving hospital/ college will provide a body receipt certificate which is the equivalent of a cremation/ burial certificate, and is needed for registering the death.

Of course, it is possible to do eye donation and/ or brain donation and then use traditional methods for the body, like cremation/ burial. Donating the eye and/ or brain does not disfigure the body, which remains suitable for viewing and for the traditional cremation/ burial.

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What are the advantages of enrolling in donor programs?

By enrolling, you get access to information and resources, and have contact numbers to use when the donation has to be made. You can ask questions on procedures and eligibility.

Enrolling also means that you get a card you can carry with you or display to tell people what you want. It makes your intention quickly evident in case of accidents. It is also helpful in convincing relatives you are serious about donation.

Enrolling, however, does not mean that your next-of-kin is obliged to carry out your wishes and make the donation. Whether to donate or not is their prerogative. They may choose not to donate the tissue/ body, or the situation/ timing of the death may make donation infeasible.

So enrolling does not ensure that donation happens, but it increases the probability. The donation may even happen at another place; for example, if your intention to donate your eyes and body are well known to your family, and you die in another city, they can do the donation there through some other organization.

Do keep in mind that organizations that coordinate donations may close down or their phone numbers may change. It is better to opt for schemes/ organizations that are more reliable, and to periodically check that the organization still exists.

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How do I get a donor card?

All enrollment schemes result in some type of donor card/ document being issues to the person who has enrolled.

Also, some organizations allow you to download and fill a donor card, which you can carry it with you. In this situation there is no enrollment, but the intention to be a donor is stated in the card present in your wallet, so it is visible in case there is an accident.

Recently, a new scheme has been started in Karnataka to have a sticker on the driving license to indicate “organ donor.”

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I sometimes meet people who say they are donors. What does that mean?

People typically start calling themselves donors if they have expressed their intention to be donated after death and have enrolled in some scheme somewhere. They may also be carrying the donor card.

Keep in mind that these are all intentions. The person is expressing a desire about how his/ her body should be handled after brain death/ death. This intention will bear fruit only if the next-of-kin is able to act upon the intention and actually make the donation after the person dies.

However, having enrollments and becoming donors is a good way to spread awareness and intention, and also to encourage discussion and debate on the need for donation. If friends and relatives know of the intention, they will be more willing to ensure the donation actually happens.

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Does every enrollment result in donation?

No. Firstly, donation can only happen after death. And at the actual time of death, many situations may happen that that result in no donation. For example:

About Swapna Kishore
I'm a writer, blogger, and resource person for dementia/ caregiving in India. I have also been a dementia caregiver for well over a decade, and am deeply concerned about dementia care in India; on this blog I share my personal caregiving journey, my experiences as a resource person for dementia care, and musings on life, aging, dementia in India, and such sundries. More about me and the work I do for dementia care. For structured information on dementia, for discussions, tools and tips on caregiving issues, for resources in India, and for caregiver interviews, please check my website http://dementia-care-notes.in (or its Hindi version, http://dementiahindi.com). For videos on dementia caregiving (English and Hindi), check the youtube channel here.

7 Responses to FAQ on Organ/ Body/ Brain/ Eye Donation

  1. poornima says:

    Very informative swapna. Thanks for the article
    poornima from pondicherry

  2. lakshmivsanthi says:

    its so useful but i have adoubt that can we donate organs and the rest of body tooo….

    • Well, one can donate the body after donating the eyes and brain; I donated my mother’s eyes and brain and then donated the remaining body, and I know some other persons who did the same.

      If other organs are donated (for transplant, as in the case of brain death), I guess the hospital that is to accept the body after the removal of organs will probably decide whether or not the rest of the body can be used to study anatomy.

  3. Harish Thakker says:

    Really very useful article .
    I m very keen to donate body n looking for more material in the subject …

    • Thanks! Do contact any reputed medical college (anatomy department) and they will be able to answer your specific questions and provide you more details of the procedure they follow.

  4. Durgesh says:

    Thoroughly informative. I had so many questions on this topic that I hardly knew they would be answered on one and the same website. Thank you for this wonderful article.

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