Grief has another dimension when your loved one donates their body to science
Calum Edge’s mother donated her body, inadvertently adding to his grief when she died
Calum Edge’s mother donated her body, inadvertently adding to his grief when she died
Every year about 600 people in the UK donate their bodies after death to medical science. In 2015, my mother was one of them.
We had talked about it several years earlier. As an emergency nurse, I was acutely aware that death can occur at any time and wanted to know my parents’ wishes when it inevitably did.
We discussed options such as being buried in a cardboard box and having a humanist service. True to form, my mother told me that whatever she decided, she did not want us to spend any more than we had to on a funeral. She actually said she did not want a funeral at all.
‘She had signed her body over’
At around 9 o’clock one morning in March my mother died suddenly of a cardiac arrest. After an unsuccessful resuscitation attempt by paramedics and the local emergency department (ED) team, it transpired that she’d had a massive myocardial infarction.
This completely blindsided me. Having spent my entire adult life working in emergency departments, I have broken this kind of news to families countless times. Before this day, whenever I thought about the death of my parents, I convinced myself that I would be able to cope, that grief would not be so bad for me – ‘I’ve witnessed grief since I was 18, I will be fine,’ I thought. I was clearly naive and wrong.
‘My mother was a teacher during her life and clearly wanted to continue teaching after death’
I made the three-hour drive to be with my dad, with many tears shed on that short journey. Not long after I arrived he informed me that my mother’s body was due to be collected from the hospital mortuary by the local medical school.
At some point in the preceding years she had indeed contacted the university, filled out the paperwork, seen her solicitor and signed her body over to medical science in the event of her death.
Although we had discussed it years before, I was still surprised. I wasn’t aware that she had actually committed to this plan, let alone made it official. Why would she? She was still relatively young.
It kind of made sense; my mother was a teacher during her life and clearly wanted to continue teaching after death. Regardless, I was still not expecting to be dealing with her death aged 65, and my father and I each started the journey down our own paths of grief.
No funeral to arrange
We did the ‘normal’ post-death things – gathered as a family, collected the death certificate and registered the death. My dad started the monumental task of informing everyone who needed to know, changing details and filling out forms.
Where we deviated from the usual formalities was that we did not have a funeral to arrange. Instead, we attended the university the following day to fill out paperwork, following my mother’s wish.
We were told that the university held a memorial service each May for the families of those who had donated bodies in the previous year. We also learned that at some point over the next three years my dad would receive a phone call informing him that my mother’s ashes were ready to be collected.
‘Most days I was thinking about what was being done to her body and by whom. Were they being respectful?’
After about ten days I returned to work. I was due to start a new job at the same trust at the end of March, so was already working my notice. I wondered whether starting a new role was the best thing to do at such a time, then by chance my boss recruited me to help plan the move into our new ED, and my new boss agreed to hold my position until this was done. Stressful? Yes. Mind occupying? Definitely.
A chance to talk to other families
We attended the service in May, which my mother would have hated for the amount of religious content. It was a positive experience for us as a family – a chance to talk to other families who had been through something similar, to share experiences and learn about coping mechanisms for this weird grieving process that had an end date of ‘sometime in the next three years’.
But we didn’t feel comfortable with the experience at the time. We left soon after the service to have our own memorial with a few family members and friends at the same pub where my mum and dad had their wedding reception.
I started my new job the following month and continued to grieve, or so I thought. At some point I spiralled into a dark depression. I could not allow myself to think of my mother, because each time I did I pictured disturbing images of her decapitated head, limbless torso, intricate medical examinations of the tendons in her arms and numerous other surgical procedures.
‘I spent many hours trying to find support services for families who were struggling after body donation, but could not find any’
Most days I was thinking about what was being done to her body and by whom. Were they being respectful? Did they even care that it was my mum? When would it end?
I was sleeping far too much and my physical appearance changed. Photos from that time show how exhausted I looked. I had numerous bouts of sleep paralysis, which worried me even more – in those weird states, half-dreaming and half-awake, I would want to scream or cry but couldn’t even breathe.
Struggling to cope at work
I was struggling at work, which started to become clear to my colleagues. It took an intervention from two of them for me to realise I needed help, but I still didn’t think I was depressed.
My trust takes the mental well-being of its staff seriously and has linked with the local mental health trust to provide mental health services to staff, with a 24-hour self-referral hotline.
I referred myself to the trust’s counselling service, and after three or four sessions I was signed off with depression. I was on antidepressants and only just beginning to really start grieving.
I spent many hours trying to find support services specific to families who were struggling after body donation, but could not find any.
I was ready to speak to others who had been through this. But neither the organ donation service nor the university could suggest anything other than the usual bereavement services available.
Fast-forward three years and my mother’s ashes have been returned. I am enjoying my new job, off the antidepressants and on the whole things are becoming easier to deal with.
In January this year I was invited to attend a resuscitative thoracotomy course, led by one of the trauma consultants I work with. It was mostly aimed at ED consultants, but because I work as a major trauma nurse the invitation was extended to our team.
‘A humbling and mind-blowing learning experience’
Historically, pig carcasses have been used for these courses, but this one was different – we used cadavers of people who had donated their bodies to medical science. The possibility of a relapse of my depression played on my mind, but I still attended the course.
When I walked into the mortuary I saw four limbless, decapitated torsos. Only a few members of the group were aware of my history so I suppressed my immediate emotional response and decided to see it through.
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This was the most humbling and mind-blowing learning experience of my nursing career. Being able to practise the most critical of interventions in a safe, controlled environment was phenomenal. To actually get your hands on organs and feel their structures and proximity to each other; to get a full understanding of how catastrophic injuries occur; to learn about the intricacies of the human body in a way I had never been able to previously in my nursing career.
Four people had donated their bodies to medical science so that the members of this group could learn. The sacrifice their families made in extending their grieving process for years enabled us to learn.
‘What my mother did had helped train medical students to save countless lives’
The decision my mother, the teacher, made was to provide future medics with the best possible learning experience, one they could not get from books, CT or MRI scans, apps or simulation.
This was a hands-on learning experience. She taught in life and she taught in death, and I have huge respect for her for doing it.
When I spoke to the course leader afterwards and explained my personal experience, he told me that what these sessions do is teach emergency consultants how to attempt to save lives – not just one life but multiple lives.
What my mother did had helped train medical students to save countless lives. Donating your body to medical science has an even wider impact than organ donation, indirectly benefiting many patients. My mother’s teaching is now done, but her students will continue to consolidate the learning she provided to them throughout their medical careers.
‘I would go through the pain again’
My grief will never end, but neither will my pride in my mum’s decision. It was hard for us as a family to deal with – the lack of specific support for this scenario resulted in a delayed grief response, as we did not go through the ritual of attending a funeral and burial or cremation.
But having experienced how rewarding this way of learning is, I would go through the pain again to honour her wishes.
I owe thanks to my wonderful colleagues, friends, family and partner for helping me through that period of my life. But I am also grateful to the 93-year-old man who donated his body to medical science and advanced my learning on the resuscitative thoracotomy course. He helped me to come to terms with my mother’s decision.
Calum Edge is a major trauma nurse coordinator at Aintree University Hospital NHS Foundation Trust, Liverpool