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.

To cope with their discomfort/ uncertainty, people end up saying things like “this is not part of our culture/ religion.” And while yes, donation is not (yet) part of our culture and norms, I think the “not part of our religion” statement is more of an instant reaction than a thought-out statement. Because, every religion encourages charity and donation, and scriptures of all shades have stories about major sacrifices made by persons, including sacrificing one’s own body for the sake of others. In fact, persons working in the area of spreading awareness about donation have enough quotes showing how major religions (and religious leaders) support all types of body donations after death. That includes donating eyes so that the blind may see, donating brains so that researchers may study them and understand stuff and find treatments for problems like dementia, donating bodies so that medical students may learn anatomy, donating organs (in case of brain death) so that persons whose organs have failed get a fresh chance at life, and all other such donations possible after death/ brain death.

Anyway…

Death is not something we discuss too often, nor do we discuss what happens after it. And even if someone wants to talk about it, the immediate family is often uncomfortable with it.

Quite a few persons I talked to about body donation were keen to donate their bodies but they had not discussed it much with their families. In some cases, they had tried to talk to their families but their children were either unwilling to talk about this, or uncomfortable with even considering body donation.

A few years ago, when someone I knew died, I saw his family members debate and disagree on the rites to be followed. The deceased had clearly indicated what he wanted, but that did not seem to be a major criterion for areas where the family members had different norms and expectations. One even said, “How does it matter what he said? If we do it this way, ABC (a not-so-close relative) will get upset that we did not show enough respect. Let’s just stick to tradition.”

I thought respect was shown by following the wishes of the person who died, even if they were not popular with everyone. Apparently, I was wrong.

In another instance I know of, the body donation was dropped because one of the favorite grandsons (who had not objected to the body donation earlier) was really upset by the death and wanted to dress his grandmother in her finery and best makeup and light the pyre to show his love and respect. When actually faced with the idea of donating her body it seemed to him as being something gruesome which would hurt her. His objection was enough for the other relatives to acquiesce and ditch the donation idea. (He loved her the most, they said, so his wishes should be respected.)

I hear it very often: we want to donate, but our relatives will never agree. Many such would-be donors don’t manage to persuade their relatives enough to ensure their wishes with be honored after their death. The desire remains unimplementable because even discussing it causes conflict.

This is why whenever I talk about body donation, I mention the need to make sure everyone around knows and understands the person’s desire to donate the body. Objections and apprehensions must be settled before, and family commitment must be obtained. Consensus helps. There will always be some persons who are uncomfortable with the idea but the people close to the deceased should have the confidence and conviction to ride it out.

If the deceased has been vocal about his/ her desire for body donation, that helps. If the deceased has left a note clearly stating this desire, that gives the family something to show others to reduce their discomfort and objections. It helps if all the information needed to actually manage the donation is on hand when the person dies, so that no research/ surfing is needed to check up what sort of body donations are feasible, whom to contact with which documents, and what sort of time-window the donation has to be done. And in some types of donations, prior registration is necessary or highly desirable.

Some people assume that doctors and hospitals will be able to help them with the nitty-gritty after the death has occurred. While I’m not saying it cannot happen, I do know that depending on such institutional support is not a good strategy.

Not all doctors are conversant with what is feasible and what is not when it comes to body donation. Most do not know the procedures. It’s not that they are against donation, it is just that they have not found out what is needed to help coordinate such donation. They may not even know much about the eligibility. I know of doctors who assume that eyes cannot be accepted from someone who was a diabetic or who has had cataract surgery (eye donations can be accepted from such cases).

Also, hospitals don’t necessarily help to coordinate donations for deaths that happen in the hospital because this is additional work for them and they may have their own performance criteria and priorities. I have heard of instances of nursing homes that have told the freshly-bereaved relatives that if they wanted to donate the eyes, they can please take the body to a Govt. hospital instead. Facing such comments at a time when one is standing next to the body of a loved one who has just died is quite enough to deflate any urge to donate; families need support and facilitation at such a time, not obstacles and frowns.

So yeah, if we want our bodies to get donated, the chances are much, much better if we have made sure everyone knows what we want, that relatives have agreed and are prepared emotionally, that there is consensus and support. We also need to make sure that anyone who will end up having to make decisions and dispose our body has all the required information and contact numbers required to coordinate the donation. We should have written letters explaining our desire, and also registered in relevant schemes to make the donation smoother.

Oh, and before I close, I’d like to share a couple of episodes that happened just last month or so.

In one case, I was contacted by a distant relative of someone who was being taken off life support and was therefore likely to die in a short while. The caller wanted to know what procedure could be followed for body donation at such short notice. The elderly lady being taken off life support had not been a religious person, but had also not registered for body donation. I explained all I knew to this caller, passed on relevant phone numbers, and so on. I wished the caller luck and told her to contact me again if necessary.

Just a few days later, I got a call from a woman who wanted to talk to “Mr. Swapna Kishore” who was apparently an Arya Samaj priest who performed final rites. After I confessed that I was a female, non-priest, and “not at all” someone who did pujas, I asked the woman at the other end how she had got my name and number, and she told me her aunt had died and she got my contact from another relative. She also told me that the deceased had not believed in God, which is why the family was going in for the Arya Samaj rituals and not the typical traditional set. I almost asked her why they were performing any religious rituals if the deceased had not believed in them, but then it was none of my business, and besides I now understand that rituals are often more for the family’s comfort and not necessarily because the deceased wanted them…

Call me a dim-witted tubelight if you will, but it was only a week after that second phone call that it occurred to me that the two calls were probably in the context of the same ailing lady, and that the second call I received was because my name had reached her as a person who knew something about how to handle the final body disposal for someone who did not believe in rituals. A Chinese whisper sort of down-the-grapevine may have converted me from someone who knew something about body donation for science/ medicine into something I considered quite different: a priest who conducted actual rituals to consign a non-believer’s body to the sacred fires…

Ah well, what all this rambling above really means is that the thinking, discussing, debating, researching cannot easily be bunched into the crunched time frame of dealing with a death that has just happened. So if you are really keen on donation, preparation is key.

I’ll probably post later about some questions people asked me to understand the types of donation, and I will share whatever I know about how to plan for them.

Link referred to in post: Impermanence, Death, Closures and Continuity through Body Donation

Important note added: After my mother’s death and this blog post, I received several queries about donation, and I have therefore posted a blog entry to address the common queries: FAQ on Organ/ Body/ Brain/ Eye Donation.

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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://dementiacarenotes.in (or its Hindi version, http://dementiahindi.com). For videos on dementia caregiving (English and Hindi), check the youtube channel here.

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