Voluntary body donation: some thoughts in response to queries I get

These last few days I’ve been updating my FAQ page on body/ brain/ organ donation and I thought it’s perhaps time to also share my thoughts and observations based on the my conversations with prospective donors.

One thing I notice repeatedly is a significant communication gap between the person who wants to donate his/ her body and the family members who will actually have to do the required donation and sign the consent forms.

One example of a gap is when the prospective donor does not want the family to decide how to dispose the body after death. These donors believe that if they have signed up for donor programs, family members will be obliged to respect their wishes. Some such donors even consider a donation enrolment as equivalent of a “will.” Alas, they are mistaken. There is no legal obligation on the family members to donate a body just because the donor wanted this to be done. The next-of-kin decide how the body may be disposed; they select the way (cremation, burial, donation) and rituals depending on what they want (unless the death is “unnatural”, which then involves police and autopsies and stuff).

A couple of persons I talked to were not even on talking terms with immediate family members. They would not inform them of their travel plans or health problems or anything else, and had not told them about their desire to donate their bodies. They were so sure that their intention to donate was good enough to ensure donation happens that they hadn’t paused to think that it was this alienated family that would handle their body disposal after they died. The dead person does not exist any more, and cannot dispose off his own body.

Some donors tell the family what they want, but the family is not convinced. The topic is not discussed much, because everyone is uncomfortable talking about it. Even if the immediate family is almost convinced, the topic is not broached with the larger familial or social circle. Donors don’t realize that this is likely to result in a failure to donate, because once they die, their immediate family members will face social pressure and pressure from relatives, and may find it easier to just opt for traditional modes of body disposal.

One amazing thing I noticed is that in many families, the elderly person is keen to donate, but faces a lot of protest from the children, even children who are scientists and doctors and who theoretically accept that body donation is good. These children cannot imagine Appa or Amma’s body being donated; they see it as disrespect (students cutting a body of a loved one) or hurtful (imagine taking out the eyes), but have no problem with seeing the body being buried or being burned on a pyre. This emotional barrier to donation makes discussion difficult. In some cases, the prospective donors persist till family members come around and agree that they will donate. In other instances, when the children get emotional and agitated, the parents stop talking about the donation.

I recently attended a function organized by one hospital for its registered voluntary body donors. The hall was full of elderly persons who had signed up as donors, but I saw hardly any middle-aged children who would probably have to coordinate/ perform the actual donation. I wondered why these elders were not accompanied by the children if the commitment to donate was a family commitment. It was a Sunday, so attending should not have been a problem. Were these elders living away from their children (empty nests are common now), or were the children not involved enough to come along, or did the elders not even inform them about the function? Wouldn’t this affect the probability of the donation actually happening?

Another thing I have noticed when talking to many prospective donors is that they (and their families) have not spent much time figuring out the nitty-gritties that have to be done to actually donate the body. They remain unclear about who has to be contacted after death, how to get the required certificate from the doctor in time, etc. It’s a morbid topic, sure. Somehow they assume (or hope?) that getting a donor card means the donation will be easy to do and don’t figure out the procedure to be followed as soon as the death occurs (or as soon as the family realizes the person is dead). The confusion and distress that kicks in when someone dies is not factored into the planning. Most donors and their families assume that the hospitals or doctors will guide the family through the donation process when the time comes. They don’t realize that body donation is so rare that most doctors don’t have much experience in it and will not be able to help. It was realization of such information gaps that had led me to create the FAQ page last year (this is the page I have now updated to improve clarity).

Thinking about and planning for body donation takes effort and commitment, because in our current setting, it is far simpler to use the conventional modes of cremation or burial. So a prospective donor’s efforts cannot stop after registering as a donor. Much needs to be done to make sure that this intention converts into an actual donation after death occurs. This includes ensuring that family members are convinced about the donation, and so are persons in the relatives/ social circles. Family members will need to act promptly after the death to coordinate the body donation, which means they need to be very conversant with the procedure and also have the required information readily accessible. Their commitment to actually donate the body must be reinforced periodically, so that it is not forgotten when the need arises. And additionally, planning may require steps like involving the family doctor and securing their commitment, and so on.

Oh, and my updated FAQ page is here: FAQ on Organ/ Body/ Brain/ Eye Donation. It is rather long, but hopefully it covers all areas where people need information. Do let me know if you have any suggestions.

P.S.: In the post above, the discussion on post-death procedures is in the context of normal death (cardiac death). For the other form of death, brain death, the person is already under the care of the team of doctors who declare the person brain dead and will guide the family through the process of organ donation. In brain death cases, organs can be donated if the family is comfortable donating organs of a person who is still on some sort of life support; the procedure is not the challenge as the person is already being tended to in a hospital that is equipped for accepting organs for transplant.

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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 (last update date: 14 August 2016) 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?

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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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.

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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.

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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.
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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?
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