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.

I try to keep this post updated but some highlights of common queries/ problems I encounter are also discussed in Voluntary body donation: some thoughts in response to queries I get.

• What is body donation?
• What is organ donation (and/ or organ transplantation)?
• What is tissue donation (including eye donation)?
• What is brain donation?
• 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?
• I’ve heard the term “cadaver” in some articles on donation. How does that fit in with all this?
• How can I donate my organs for transplantation?
• I’ve heard we can enrol for donation. I want to enroll so that I can be sure that my body is donated.
• Well, once I die, I obviously cannot donate my own body. What is the procedure others have to follow after my death to donate my body?
• What’s this talk of natural and unnatural death? How does it affect body donation?
• Frankly, I am very confused about death certificates and the procedures around them. Some people talk of the doctor issuing a death certificate, but doesn’t the municipality issue it?
• So both certificates are needed–the one from the doctor showing the cause of death, and the one from the municipal authorities showing the registration of death. What is the registration/ death certificate issue procedure that the municipal authorities use?
• You seem to pay a lot of attention to this doctor’s certificate part. Can’t we just get it from the hospital where the person was registered as a body donor?
• We have a family doctor. Will he be able to help with the body donation process?
• If the death takes place in a hospital, they’ll handle all this donation business if we ask them, right?
• So if I want everything donated, in what order do I go about it?
• You mentioned that enrolment is not necessary for donation. Then what are the advantages of enrolling in donor programs?
• How do I enrol for donation/ get a donor card?
• I sometimes meet people who say they are donors. What does that mean?
• What sort of situations could lead to a donation not happening though a person had enrolled?
• Within how much time after death must the donation be done?
• All this sounds very intimidating. Does anyone ever manage to donate?
• I am keen to donate my body/ brain/ tissue/ organ but my family is not willing
• One objection some family members have related to religion. They say our religion does not allow such donation.
• Your page only discusses eye, brain, body and organ donations. What about things like bone donation, etc.?
• Hey, hold on! But can’t I make sure of organ donation through a living will? I have heard that we can have living wills now in India. (New question added; evolving area, impact of living wills unclear but here’s an intro)
• I want to know more about various types of body/ tissue/ organ donations. I want to read/ hear about persons who have actually made such donations

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.

Sharing thoughts with those considering body donation: the importance of preparing

After my mother’s death and my blog entry on how I had donated her eyes, brain and body, I got several queries on body donation. I had planned to do a full-fledged well-researched entry with data on the topic but as I’ve not yet got time for the full entry, I am doing a quick post – talking about what I consider the most important factors in being able to donate one’s body after death.

This post is about the importance of being prepared.

You see, no one expects death to happen. Even when we see someone obviously declining, we are still unprepared for the actual stopping of breath. When that happens, there is a shocking finality to it. And in that shocked state most of us slip like automaton into the stuff that follows.

Luckily for the just-bereaved, there are people around who help. These people–relatives, friends, neighbors, and colleagues—they call the doctor for the certificate, they dress up the body, they spread the word and even handle the condolence calls. These people find out about the nearest crematoriums (or they already have the data), they clear space in the house to place the body so that people can pay their respects, they find out about morgues, and get the municipality forms for registering the death. They know which priests to contact. The bereaved may have to provide some preferences and criteria (I want to wait for so-and-so relative to arrive first type of things), but a lot of the organizational nitty-gritty depends upon the community expertise immediately made available. People even take over the cleaning of the house and the arranging of tea or food or whatever.

Most of what follows the death thus goes according to the typical script. The relatives arrive, things are done in ways that are acceptable to the community. Everyone needs to pay respects, everyone tries to get closure.

So what’s this got to do with body donation?

The point is, there is no large pool of knowledge or experience for potential body donating families to draw upon at the time of death. Relatives and friends (who know what to do under normal last-rituals situations) are clueless on how to help for the alternate form of disposal: body donation. They are unsure of what’s going on, and perhaps unprepared or outright uncomfortable with this deviation from the norm. Relatives who were unaware that the family may consider body donation may mutter a protest or withdraw because of their discomfort. That adds to the overall awkwardness and tension.

Impermanence, Death, Closures and Continuity through Body Donation

In brief, my mother died at home two days ago, on Sunday evening from aspiration pneumonia. In accordance to her wishes, I donated all the parts of her body that I could. Her eyes went to the eye bank; her brain went to the brain bank for research; the rest of her body went to a medical teaching hospital for students studying anatomy. Again, as per her wishes, her body was at no point put up for viewing, and no other rites were held.

These various body donations put a dignified, respectful and heart-warming end to a life that had been racked with challenges and deterioration for many years now. My mother looked peaceful, and it was the sort of end she always wanted, and I was glad I could respect her wishes.

Sharing below some of what happened.

The day started much as normal. My mother had been stable but deteriorating. The March beginning blood tests were normal. She had problems swallowing and would sometimes make gurgling sounds; they sometimes subsided in a short while, but sometimes needed medicines, including antibiotics. My mother was spending most of the day sleeping and not showing any interest in people around her most of the time.

It was around mid-morning on Sunday that she started the gurgling again. It seemed worse than the minor kind that subsided on its own, so we made her lie on her side, and called the doctor. Her expression showed no discomfort in spite of the gurgling sound, but her breathing was shallow and rapid. After a while, her body seemed warmer than normal.

Hubby and I surfed for gurgling while waiting for the doctor. We downloaded pages and PDF files with scattered, even contradictory information. Some people said gurgling came and went, some gave the gurglers just a few hours or days to live after it started, some gave them a few months, some said there was no correlation. Some explained that gurgling sounded bad to the family and worried them, but was not actually a hurtful experience for the patient. One document cautioned medical practitioners not to use the alternate term for gurgling (death rattle) in the presence of family members.

The doctor came, checked her, made me hear the gurgling through the stethoscope placed on her chest, prescribed antibiotics to be given via IV. He initiated the process of a nurse coming over with the IV stuff, while hubby went to buy the medicines. After a while, my mother’s gurgling reduced, and she seemed very tired. I tried to talk to her, but felt she wanted to rest. We cleaned her, and let her rest. Things seemed better with her. Meanwhile, we were following up for the nurse with the IV, and as soon as we realized the nurse would be arriving shortly, hubby went to my mother’s room to tell her that.

She was not breathing.

Returning with a brief update, and thoughts on brain bank

So, it’s been three months since my last blog entry. This, after I started the year with a daily entry for one whole month! Ah, well. In software project management, there is a saying: How does a project get to be a year late? One day at a time. That’s what happened here, too.  And after the gap crossed a month, I told myself every day, what difference will one more day make? So it crossed two months, and almost crossed three months.

The last three months have been hectic for me, but dementia and caregiving have continued to form a major part of my life. If anything, the share of my time and energy in these has gone up. It’s just that I could not gather my thoughts enough to make a blog entry.

Let me start with one major event in dementia, the World Alzheimers Day, observed world-wide on September 21. The events included a memory walk, presentations on dementia, and an interactive session with doctors who talked about dementia and answered questions. And Dr. Shankar gave a presentation on Brain Bank and its importance in research.

Medical Research on Dementia, Brain Banks

A slight diversion from the main theme (dementia and caregiving) that I am exploring–this is about the brain, and how doctors need brains to study and what we can do about this.

We all expect doctors to cure our health problems, or at least treat them and make them bearable. We go to clinics and hospitals hoping that medical professionals will have solutions for problems our bodies throw at us. We expect them to be gods.

How do these gods get their toolkits? How do they know what a set of symptoms means in terms of what our body is doing and why? How do they create drugs and decide on surgery and other interventions to resolve these?