Centre for Health, Technologies and Social Practice

It’s Been Emotional: Managing Suffering In Organ Donation

By Stephanie Parsons (Anglia Ruskin University)

 

Organ donation has generated a plethora of literature and grabs the media and public’s attention. Donation campaigns highlight and promote the procedure through advertising the ‘gift-relationship’ and how, by donating, one person can help many others if organs are suitable enough. This hybridization of human bodies continues to fascinate the public and generates an unusual ‘combination of curiosity, celebration and anxiety’, making transplantation a problematic area within medicine and social life (Sharp, 2006).

Theorists such as Lock (2002), Sharp (2006), and Sque, Walker and Long-Sutehall (2014) all agree that in order to begin to understand the problems and complexities of donation, social scientists should move away from researching the functionality of donation such as focusing on ways in which to increase organ supplies. Instead, they should focus on people’s experiences of transplantation to uncover what is usually hidden from plain sight and focus on the psychosocial aspects of the procedure. The researchers are interested in the ‘internal workings’ of donation and some of their work has focused on areas such as death, organ and donor recipient relationships and grief. They recognise that donation cannot be achieved without the death and suffering that occur in order to make transplantation happen. Sharp (2006, p.3) suggests, ‘researchers who study transplantation most certainly must confront the suffering and even the deaths of patients.’

It is from this, that the research within my thesis, which I discussed at the ‘Boundaries, Bodies, Borders: The Global Movement of Body Parts’ event, will expand upon to investigate individual experiences of organ donation, pre and post transplantation. The research employs a sociological/theoretical tool kit using concepts such as the sociology suffering, emotion-work, boundaries and biosociality to examine primary data. For example, it questions how suffering is mobilised through its emotional appeal to how suffering is also denied. It factors in the emotion work and official and unofficial boundaries that are in place and looks at what is left to donor families and recipients to manage away from the professionals. Biosociality, a term coined by Rabinow (1996, cited in Rose 2007) is also used to examine the expectations of the patients, the active patients following a particular set of expectations set out within the transplant remit.

For example, from the interviews conducted, it factors in the ways in which certain medical staff, organ recipients and donor families all experience and manage the medical, technical and emotional aspects of the donation procedure, using the theoretical approaches stated. It investigates how medical staff such as specialist nurses and donor/recipient coordinators emotionally manage donor families and organ recipients. How do both parties adhere to and defy policy guidelines? How do they manage the official and unofficial boundaries and what are the consequences of these boundaries?

From my research, it was found that certain medical staff found it difficult to manage donor family’s grief, especially when faced with asking them if they would like to donate. Staff also believed that donation helps with donor families’ grief. However, from the donor families interviewed it was found that this was not the case. The donor families suggested that all they could hope for was to make a horrendous and extremely sad situation somewhat positive by donating. Ultimately, to stop a family going through what they had.

In relation to organ recipients, they found it incredibly difficult to write letters to their donor families. Two weeks after transplantation has taken place, recipients are asked if they would like to write a letter to thank their donor families. These letters are highly managed by coordinators and they also have a set format they must follow. They cannot be too personal or emotional and the author must not be identifiable. As a result of these official policies/boundaries, recipients discussed how they were unsure whether to write one and whether families would really want to hear from them. Some recipients spoke about how they imagine their donor to be, whilst others simply wanted no contact and did not want to write a letter.

My research aims to add to current literature on the sociology of transplant, emotions, health and biosociality. It aims to highlight underlying assumptions about transplantation in contemporary society and reveal the ways in which emotions are problematic and how boundaries are useful and necessary. Boundaries are needed in this process. However, it is important to appreciate what goes on between these boundaries. ‘We should not look for boundaries of things, but for things of boundaries.’ (Abbott 2001, p. 261).

 

References:

Abbott, A., 2001. Time Matters On Theory And Method. Chicago: University of Chicago Press

Lock, M., 2002. Twice Dead Organ Transplants and the Reinvention of Death. California: University of California Press

Rose, N., 2007. Politics of Life itself Biomedicine, Power, and Subjectivity in the Twenty-First Century. Princeton: Princeton University

Sharp, L., 2006. Strange Harvest: Organ Transplants, Denatured Bodies, and Transformed Self. California: University of California Press

Sque, M., Walker, W., and Long-Sutehall, T. 2014. Research with bereaved families A framework for ethical decision making. Nursing Ethics, 21 (8) pp.946-955.

 

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