Updated: Apr 1, 2020
Guest Writer: Stephanie Parsons
There are currently around 6,500 people on the UK transplant waiting list and nearly 500 people died last year waiting for a transplant (NHSBT online). National Health Service Blood and Transplant desperately need more people to sign up the donor register. Recently an ‘opt-out’ consultation was introduced in England in the hope of saving thousands of lives waiting for an organ transplant. Under this new system, it would be assumed that individuals are prepared to donate their organs unless they, or their family, state otherwise. Around 1000 families say no to organ donation each year and it is hoped that with a new opt-out system, England’s donation rates will improve.
Spain is currently hailed as one of the leading countries for organ donation with positive rates of deceased donations under their opt-out system. However, more evidence is needed in England and Wales to suggest that changing legal infrastructure and donation policies will lead to any improvement in donation rates. For example, a part of NHS Blood and Transplant’s (2017) campaign to promote donation is through ‘gift of life’ rhetoric and ‘have you had the conversation?’ This is aimed at encouraging families to have a natural discussion on their wishes after they die about organ donation. Encouraging dialogue with families may be the first step to improving donation rates. However, media campaigns for transplantation represent donation as being solely the donor’s decision. Individuals have a donor card and they decide which organs/tissue they would like to donate. Although, in many cases, it is the family that determine whether a donation is made on behalf of their loved one, even with an opt-out system.
The organ donation system is much more complex and current media campaigns and transplant literature fail to highlight the emotional distress of organ transfer that can cause ‘blockages’ in the procedure. Organ donation is represented as a straightforward, step- by- step process that uses ‘gift of life’ discourse to help simplify the process and does not reflect the complexity of transplantation (Sque and Payne, 2007). Such emotional complexities can arguably hinder the process, especially when it comes to organ recipient and donor family contact post-organ transfer, an area in which NHSBT are aiming to encourage more recipients to write a thank you letter to their donor family. Ultimately, NHSBT would like all recipients to write to their donor family and would like to boost the number of letters being written.
In order to better understand the emotional complexities of recipient and donor family contact, a part of my research explored how organ recipients felt about writing a thank you letter to their donor family and if they wanted further communication with them. It was found that recipients had mixed feelings about letter writing and potential contact with their donor families. From the recipients interviewed, some of them discussed how they wrote a letter but did not receive a response. Others said they had written a letter but did not want a response and one participant had received four transplants but has never written a thank you letter.
The research also considered how donor family’s felt about receiving a thank you letter from recipients. It examined whether family’s wanted a letter and if they also wanted to create a dialogue between themselves and organ recipients.
For example, one of my participants Shaun (all names are pseudonyms) had received his transplant around ten years ago and when we talked about him about having contact with his donor family he said that he did write a letter but he did not want to know whether they had received it and did not want any contact with the family.
‘‘I didn’t want his family to think that his family have an association with me. I just didn’t feel I could face that because I think it could be extremely difficult and that’s what I decided to do, I don’t know if they had the letter or not I decided that I didn’t want to know and they do with the letter as they wish.’
Shaun also discussed how he did not want his donor family to live vicariously through him or feel that they could have a say in how he lives his life. Similarly to Shaun, Alex, another organ recipient, discussed how he felt he could not write the letter of thanks himself and instead asked his partner to write it for him. He also did not want any contact with his donor family.
‘I recognise that it is probably selfish of me but I don’t know. I would have to sit and think seriously even if they wanted contact now after all this time. At the time it was just one more thing on top of everything else and it was something that I didn’t have to think about, so I didn’t. I won’t call it baggage because that is an unkind reflection on the donor family but it is just something I didn’t consider and didn’t want to.’
In contrast, from the donor family’s interviewed, they discussed how they would be happy to hear from any of the organ recipients that benefited from the donation made from their deceased loved one. However, families suggested that by donating it meant that their loved one did not die in vain but donation did not help with their grief.
‘We could get in touch with them (organ recipients) but we’re not chasing them, the organs belong to them. We have seen people meet up and behave in a strange way. If people get in touch with us fine, but we won’t with them, it is their life’ (Simon).
It is apparent that organ recipients and donor families each have their own individual expectations of what they expect from the letter writing process. It is clear that relationships are ambivalent and complicated. The research highlights how the lived experiences of organ donation challenge ‘set scripts’. For example, Lesley Sharp (2006, pp.109-110) suggests that ‘organ recipients develop specialised ways to tell their personal stories, their words and actions bound by taboos placed on emotional outbursts’. My research offers an insight into the emotional complexity of organ donation and sheds light on the lack of information on contact between organ recipients and donor family’s. It is this type of information that has been pushed off the agenda in order to focus on encouraging successful donation rates. However, the research also shows that emotions are problematic within transplantation and these findings can help to think about what are deemed to be ‘appropriate’ relationships between donor families and recipients. It highlights the tensions of the emotional management of suffering during the process and discusses the effects of such boundaries in terms of revealing more of the ways in which experiences of relationships, loss and suffering are both construed and denied in the organisation of organ transplantation and donation.
References: Sharp, L., 2006. Strange Harvest: Organ Transplants, Denatured Bodies, and Transformed Self. California: University of California Press Sque, M., and Payne, S. 2007. Organ and Tissue Donation an evidence base for practice. Open University Press: Maidenhead.
Stephanie Parsons is an associate lecturer in Sociology at Anglia Ruskin University Cambridge. She is currently in the final year of her PhD which focuses on the emotional management of suffering during the organ transplantation process. Stephanie will be presenting alongside a team from NHSBT in March 2018 at the British Transplantation Society where she will be discussing her findings in relation to encouraging contact between organ recipients and donor family’s and how to better understand the complexities of such contact.