Donating one's brain for research - a very personal perspective

Introduction

The first ‘Brains for Dementia Research’ multidisciplinary training event on ethics and challenges relating to brain tissue banking was held on 17 October 2008. There were speakers on the legal and ethical aspects of consent, on the scope of mental capacity and on the experience of approaching families and asking if they would consider donation. I was asked to talk about the user/carer perspective of brain donation. My children and step-children were happy to be identified and described in the presentation and in this paper which is an adaptation of that presentation.

The presentation

I started by asking the audience whether they had donated their brains (none had) and whether they had signed up their organs for transplantation (quite a few hands went up). This response was in line with my enquiries of people in preparation for the talk. Many had donated for transplant purposes, some had arranged for their relative with dementia's brain to be donated but few knew that healthy brain tissue was also essential for research purposes. One person said that after her father had died she would have felt all right about any organ being taken for research but was not comfortable with the thought that someone else could be walking around with her father's heart or kidney or any other organ inside them. This feeling contrasted with that of parents who, when their young daughter or son has suddenly been taken from them, have found some comfort in the fact that good can come out of a tragic situation.

Our experience

My husband and I married in 1988, a second marriage for both of us, both our first marriages having ended in divorce. He has two daughters and I have two daughters and a son. He took early retirement from work in November 1995 because he was suffering from memory problems, and soon afterwards was diagnosed as having Alzheimer's disease. He was 57. He is now 70 and has been living in a Dementia Care Home for three years.

We both agreed to donate our brains back in February 2002. Our consultant never raised the subject with us and I can't now remember how we came to know that both our brains would be of use in research. We raised the subject with our consultant and his response was gratitude for the gift we would be making, tempered with a concern that we should think carefully before making a final decision. He gave us the information we needed to make the donation. My husband had no noticeable qualms about the idea; his attitude had always been that the body was meaningless after death and he didn't care what happened to it. However, later that year we visited Green Endings - an eco-friendly funeral service - to discuss our funeral arrangements and arrange advance payment. This visit greatly distressed my husband. I think his distress was very much about the stage that his Alzheimer's disease had now reached. He was beginning to suffer from depression, possibly because he still had complete insight into what was happening to him but was now experiencing far more severe problems in his everyday life. At this time we both made ‘living wills’ and this was also distressing for him.

Earlier, in 2000, we had dealt with all the issues that at that time we thought needed to be dealt with while my husband was still able to understand the implications of the decisions we were making. With the support of a solicitor we changed our home ownership to being tenants in common and re-visited our wills and Enduring Power of Attorneys, previously made at the beginning of his illness. As well as being well able to understand the arrangements we were making, he was quite comfortable about the discussions we had to have in relation to his Alzheimer's disease in order to cover various possible future scenarios. I think all this illustrates the importance of timing when introducing the subject of brain donation to someone suffering from dementia. I would suggest that ideally it should be some time after the distress of learning the diagnosis but before the disease has progressed much further.

Once all this was achieved we forgot about it and got on with our lives. However, now that my husband lives in the Care Home I do become very concerned that they will forget or not act quickly enough if he should happen to die when I am away. All the paperwork is in his notes, but when I went to South Africa last year I wrote it all out and placed it at the front of his care plan. When deciding to have that holiday I will admit that I calculated the risk of his dying while I was away, and as time goes on I don't think I shall take a holiday so far away again. When we made our donations, death seemed a long way in the future - an abstract concept. Now I wonder whether if my husband was able to re-think the donation, knowing that the end of his life was drawing nearer, would he change his mind? I don't think so, but I can never be sure. For me, hopefully, death is still a long way off. I don't think I would change my mind if I knew it was going to happen soon, but obviously I can't be sure how that realisation would influence my feelings.

Important issues

In order to stimulate my thoughts about brain donation I did the usual thing and googled it. First in line was an excellent information sheet written by the Alzheimer's Society which covered all the important areas that potential donors should be considering. I was concerned to read that people were advised to discuss the possibility of donation with their families. We had not discussed our donations and I couldn't remember if our children even knew. Fortunately my husband's daughters could remember us telling them, but of course telling is not the same as discussing. This is where being in a second marriage and not sharing children enters into the dynamics of the situation. I have a good relationship with his daughters and I know that they both love him dearly. However, when making the big decisions in our lives it has felt right, in our circumstances, to keep discussions only between ourselves. But if we had not had these discussions while he was able to make his own decision I would have wanted to have his daughters’ agreement rather than going ahead off my own bat. My children are used to having an independent-thinking mother but would soon tell me if they felt uncomfortable with anything I proposed. I was concerned to read that they could prevent the donation after I had died, but I know they wouldn't do that and I am relieved to know that under the new Mental Capacity Act I come first in the ‘hierarchy of consent’.

I have heard a Brain Bank described as a diagnostic service for families and a research resource for scientists. As well as wanting to aid research I do want eventually to know whether the pathology found in my husband's brain matches the clinical signs that he has shown during the course of his illness. Is this morbid curiosity? I know it's important for me, possibly because I've always been more attracted to science than arts in my education. But does this mean I no longer care about my husband's body? I have spoken to people who are not comfortable with the idea of their loved one undergoing a post mortem; my own nephew who is a GP was disappointed when a coroner decreed that his father had to have one. He considered it to be unnecessary and spoke of knowing exactly what happened at a post mortem. He also said that it was carried out with such haste that even if the family's objections had been listened to and acted upon it was too late as the deed had been done. Programmes such as Silent Witness allow us to see details that are quite graphic and perhaps add to our unease. So, can we be confident in the rhetoric which states that our loved one's body will be treated with dignity and respect; and will the dissection be as minimally invasive as possible?

Re-reading my paperwork, the guidance first states that “in due course a pathological report is sent to the next of kin and/or General Practitioner as requested” but subsequently states that “a report on the post mortem examination is routinely sent to the consultant who looked after you and the General Practitioner. If requested a report can also be sent to the family, however experience has shown that because of the detailed nature of the pathological examination it is often more appropriate to send the report directly to the clinician, and so enable the family to discuss the findings should they wish”. In my husband's case he is no longer under the active care of a consultant and his GP is the GP who visits the Home and not the one who supported us both throughout his illness until he no longer lived at our home. Having re-read all this, I think I need to revisit our arrangements for receiving the diagnosis.

While online I discovered a discrepancy between the Alzheimer's Society's information which stated that there is 48 hours following death for the donation to be effective and the American sites which stated that donation must be within 24 hours. Also online I explored the religious responses to organ and tissue donation. To my surprise, Jehovah's Witnesses are not against donation; they believe it is a matter of individual decision. They also believe that the soul ceases to exist after death and therefore would not object to post mortem examinations. In fact the only religion to be negative about donation is Shinto. People of this faith consider the dead body to be impure and dangerous and believe injuring a dead body is a serious crime. A friend of mine whose elderly husband has advanced dementia and is Greek was surprised when I told her that the Greek Orthodox Church is not opposed to organ donation. She had assumed that it would be contrary to her husband's beliefs. Another friend, a Buddhist whose Roman Catholic wife has advanced dementia, gave me their perspectives. Goutama Buddha said that over his life cycles in aeons of worlds he has fulfilled donation of his organs as one of the ten virtues for enlightenment to attain to be a Buddha. Thus brain donation by a Buddhist for research purposes is a most noble gesture and virtuous act of donation and part of the quest for Nirvana. He told me that in Aging with Grace: The Nun Study and the Science of Old Age. How We Can All Live Longer, Healthier and More Vital Lives by David Snowdon (Fourth Estate Ltd, 2008, ISBN 978-0007291311), two of the nuns’ sayings are:

He has decided to donate his brain and, after discussions with his three sons, his wife's brain will also be donated. When these discussions took place, she no longer had the capacity to decide for herself.

People's feelings about donation

Raising the subject of brain donation has led to some interesting conversations. While waiting for a meeting to begin, a group of us discussed the feeling that the person who has just died is still around immediately after death. We all had examples to justify this. Mine was that when my sister's partner died suddenly, after she returned home, the small coffee table on which he always placed his drink jumped up in the air. My sister was not the only one to see this; my niece who is the most down to earth character imaginable also saw it. I understand that this is put down to a heightened perception in the bereaved person immediately after the death. However our discussion was around whether the removal of someone's brain could somehow interfere with what happens to the spirit immediately after death. I have since wondered how having severe dementia might also affect the spirit and what is the difference between the spirit and the soul?

By far the most common view is that “everything that can be used can be taken after I die.” But two people were adamant that they didn't want to donate anything or receive anything. One said it was instinctive; she couldn't explain why except that perhaps it was interfering too much with the natural order of things. The other said it was personal and that was as much as he was prepared to say. One friend produced the credit card sized card which they had been given at the National Hospital where her husband has donated his brain. I have to say that I then felt slightly cheated that we had not been given a similar card by the Institute of Psychiatry. I don't know whether such a card will be part of the procedures for the Alzheimer's Brain Bank but I think it's a good idea. Another friend's husband who died of a subdural haematoma a year ago following a fall, had already stated that he wasn't interested in research. This was a man who had dementia with Lewy bodies (tiny, spherical protein deposits found in nerve cells) and who had made a very specific advance directive about his end of life care. One person said they needed to be reassured that nothing would show following brain donation as they have open caskets in Ireland. A few people were unsure; they were not comfortable with the idea but didn't know why. On discussion we decided it was because although the heart is essentially a pump and a kidney is essentially a filtration system, your brain is who you are - the mechanism behind all your thoughts, your knowledge, your skills and your personality.

I think this feeling is very important. I took part in some research recently and as part of the study had three MRI scans of my brain. I was given a picture of part of one of the scans and I think it's amazing that inside this structure is everything that makes me me. It is what enables me to weave 60 bobbins into a complicated lace pattern and in my husband's case made him able to produce amazing sculptures.

Conclusion

Other speakers at the Brains for Dementia training day gave facts but my talk was about feelings. It was about how people feel while they are still alive. I hope I covered the important issues: •

People won't necessarily think of donation for research and a direct approach will be needed in most cases;