After reading a couple of thought- provoking editions of this magazine and as someone who has recently started a career in this area, I thought I might offer a different perspective on a topic which may not necessarily come into people’s viewpoint very often but one which I am striving to make a ‘ordinary thing’ in death..
Now most people know about Organ and Tissue Donation and how it can be radically life-changing. However, there is far less awareness about Tissue Donation for research purposes and this is something that I, as a Research Nurse for Ethical Tissue (The Human Tissue Bank at the University of Bradford), am hoping to change as part of a new initiative which is taking place in West Yorkshire (and potentially country- wide soon) .
When I first started this job a year ago, I was already familiar with death and caring for the dying patient (I have been a nurse for almost 10 years).
However, I was used to death from a ‘caring’ perspective: the heart breaking conversation, the restraining of tears, the watching of a family in anguish kind of caring. I would stay with the family for hours, trying to make sense of this gut-wrenching situation with them. Especially in the Intensive Care setting, the family often had no time to prepare for what I could see was round the corner. And I would have to prepare myself too.
This job is different.
Death is still very present but it can now be life- affirming. In donating their loved one’s tissues for research I strongly believe that families can take great comfort in knowing that their loved ones are potentially helping millions of people and future generations to come!
“Tissue Donation After Death” is a new scheme that The Tissue Bank and I have set up and developed in the past year. My role is to promote Tissue Donation as something that can be offered to those people who want to find something positive in death, or those who cannot for whatever reason be organ donors. Only 1% of people can be organ donors whereas 99% of people can donate tissue for research (only HIV/Hep B preclude this).
Small ‘marble’ sized amounts of tissue (not usually whole organs) are taken from one or more areas in the body. This tissue is then optimised, anonymised and given to researchers so they can gain a comprehensive overview of diseased and healthy tissue. This helps them to develop early diagnostic tests, better treatments and cures for life-limiting diseases such as cancer, diabetes, Alzheimer’s, heart, lung and skin disease just to name a few.
There are no delays to any funeral plans. The donor can, of course, still be viewed in the normal way by the family and the donation is done respectfully and ethically in a local mortuary. We organise the transfer of the donor to the mortuary and of course return the donor to their desired funeral home/resting place. This is at no charge to the family.
Because we only take tissue samples which are useful to researchers (ie we don’t just store tissues in dusty jars on shelves in our labs!), there is no set number of tissues to be donated. Every case is individual and we will talk through with the donor/family what they would be happy donating. Some donors want a specific tissue to go to help fight a specific disease they may have e.g. cancer. Some are happy for us to take several different tissues and put them into multiple research projects.
I am trying to give people another ‘choice’ after death and so I think by introducing this topic into the wider public domain, encouraging people to talk about their wishes and provide them with a basic knowledge about this service, they will hopefully be empowered to take control over their end of life decisions, like choosing a special song, cremation of burial… it can be viewed as another decision to make along the way.
I recognise that this option isn’t for everyone – but there are many people who would like to give something back to the medical and scientific community especially if they are fighting a specific ailment, such as Alzheimer’s and want their tissue to go to help find a cure. It’s important to get the message out that this is another option after death…
………………but if people don’t know about it then they can’t choose it!
So please spread the word: tell your friends and family, discuss with your local GP or care provider. There is nothing to sign or action to take beforehand, other than tell your next of kin your wishes. Keep our contact details/phone number handy and then if you decide to donate your precious, possibly life-saving tissue, your next of kin can call us when appropriate and we will take it from there.
If you would like any further information or an information pack, please contact me.
By Joanne Mullarkey
Office: 01274 235849
Ethical Tissue, The ICT Bioincubator, University of Bradford, Tumbling Hill Street, West Yorkshire, BD7 1DP
Just to be clear about ‘donation’ – as some folk seem a bit confused.
The above article is about giving tissue for research purposes. There is, of course, transplantation to the living, saving and improving lives. The big message here is that they differ in who can give permission. To donate organs for transplant you have to join the organ donor register.
Details here. nhsbt.nhs.uk/tissuedonation check if there is better link
To donate tissue for research purposes the family alone can give permission.
A third option is to donate your whole body for educational purposes. You have to arrange this with the medical school whilst you are alive; your family cannot offer your body themselves, even if it was your wish and mentioned in your will. (One frequent problem we encounter is that altruistic individuals, who have made this arrangement, sometimes forget to make a plan B. This is necessary because if, for whatever reason, their body is declined at the 11th hour, their family, who thought that everything was sorted out, now find themselves having to make funeral arrangements and don’t know what is the next best option).
Here is a great article about educational donation from a previous edition of M2D. Link Fran’s mum article.
I never realised that in addition to donating much- needed organs, that other tissues like bone and skin, tendons and eyes can be donated for transplant too. According to the NHS blood and organ donation leaflet, tissue donations can directly help up to 50 people : amazing.