Some implications for policy and practice re organ and tissue donation drawn from research done with bereaved relatives and Registered nurses
(Sque & Payne 1996, Sque 2007)
1. The studies indicated that importance was attributed to bereaved relatives’ need to consider organ or/and tissue donation. This finding suggests that in situations of a donor’s clinical suitability organ donation and tissue donation should be discussed with relatives. Healthcare professionals need to be aware, and feel confident that relatives are most likely to be grateful that the option of donation was discussed with them.
2. Nurses and doctors own awareness and education about the donation of organs and tissues needs to be guided by the above ideal; also, hospital and local healthcare policies. Health professionals’ education about organ donation appears to be most effectively started during pre-registration training. Of particular importance appears to be the experience of caring for donors and their significant others. Issues regarding death, dying, bereavement and the management of the dead body in modern, Western society may usefully underpin organ donation education. The historical impact of traditional values regarding death is fundamental to these issues. Time needs to be allocated for health professionals to reflect upon their own feelings about donation and transplantation. Issues surrounding death certified by brainstem testing need to be explicated and debated. Where it is appropriate, healthcare staff need to be educated to recognise donors, and approach families about donation. Issues of importance appear to be the timing and nature of the donation discussion. This should always be carried out in a manner to facilitate a decision by relatives that will not be regretted.
3. Hospitals should have policies to identify potential donors and to inform families of their option to donate. Effective policies are needed to support staff so that donation discussions are not left to individual preferences. This would mean that hospitals need to consider systems for documenting that donation was discussed with the next-of-kin; have a duty to educate staff about donation; and, monitor the impact of donation discussions on the overall availability of organs and tissues for transplantation.
4. Appropriate explanations of how clinical neurological tests confirm death appear to be important to bereaved relatives, as well as the opportunity to attend brainstem testing. It was shown that the lack of knowledge and explanation about these events can cause relatives considerable distress, while attending brainstem testing and receiving information in caring, timely and complementary ways may be helpful.
5. There needs to be recognition of relatives’ distress when interacting with ventilated, potential donors, therefore, the need not to delay the medical confirmation of death.
6. The discourse of ‘sacrifice’ may assume a greater significance for the family at the bedside faced with a donation decision than giving the ‘gift of life’ as promoted by transplant propaganda. The perceived ‘sacrifice’ may become a barrier to actualising donation, even if the family and the potential donor, in life, had positive views about donation, and may help to explain why in populations where the benefits of organ transplantation are well understood donation rates remain low.
7. Research has shown that donation decisions may depend on the particular circumstances at the time of death. Most studies however, show that the wish of the deceased, in life, was the most influential factor in relatives’ decisions about donation. Tangible evidence of the deceased’s wish, such as a completed donorcard, was found to be helpful to relatives in reaching positive decisions about organ donation. Therefore encouraging family discussions about donation and the documenting an intention to donate, such as carrying a donorcard, or registering on the NHS Organ Donor Register, may be useful to organ donation campaigns.
8. Concerning the time of death, relatives of ventilated, major organ donors need to be given unambiguous information. The time of death for major organ donors is when death is conclusively established and no other time (DH 1998).
9. Relatives of potential organ donors are first, bereaved families, and need to be supported by staff who are educated to work with the bereaved. There needs to be constant and ongoing assessment of the family, the family dynamics, and recognition of the main decision-maker. Individualised, ongoing assessment is crucial to fulfil the family’s needs, evaluate their ability to process and use information and ensure the discussion about donation is timely.
10. There is a need for more guidance and choice to be provided by healthcare professionals about the options and the possible effects of choosing how and when relatives ‘say goodbye’ to organ donors.
11. Relatives need preparation and support for post-donation visits, e.g. Chapel of Rest, with donors.
12. There appears to be a need for improved liaison between undertakers, relatives, and the health professionals who cared for the donor. Undertakers could consult more with relatives about the presentation of the body; especially, if head or facial injuries have been sustained by the decedent. Health professionals can use their skills to minimise damage to the features while caring for the donor, carrying out corneal recovery, and by giving information to undertakers about anticipated problems in the presentation of the body.
13. There is a need for recognition of relatives’ desire for particular information about recipients and the benefits they receive from donated organs. Also, that such information may be beneficial to relatives, and that their interest may be sustained over long periods of time.
14. Interventions need be considered so that donor relatives’ wishes for recognition of donors’ contribution can be fulfilled.
15. Due to the mainly sudden, untimely and non-traditional nature of a donor’s death, relatives and significant others are at high risk of aberrant bereavement. Therefore, a need appears to exist for special bereavement follow-up and support for donor families. It may be useful for transplant co-ordinating units and hospitals to consider how these bereavement needs may be met, moving seamlessly from bedside to community (please see Interlocking model of bereavement services, Figure 1).
15. The circumstances of loss and bereavement associated with organ donation are culturally challenging, especially the post mortem procedures on the body. There is a need for public information and education about the procedures surrounding donation and transplantation, i.e. the concept of death certified by brainstem testing; brainstem testing; the nature of the donation operation (i.e. it is a careful surgical operation) and, the appearance of the donor following the operation. The propriety of the donation operation needs to be stressed in public education and in discussion with bereaved relatives.
16. Most individuals get their information about organ donation from television; therefore, this may be a useful medium for public education.
17. There is a need for the individuals who facilitate the clinical care of donors and their families (e.g. hospital managers) to be, themselves, fully informed of the complex nature of donation events, and the resources needed to provide appropriate care to relatives.
Further reading
Barber K. Falvey S. Hamilton C. Collett D. and Rudge C. (2006) Potential for organ donation in the United Kingdom: audit of intensive care records. British Medical Journal, 332, 1124 -1127.
Bellali T. and Papadatou D. (2007) The decision-making process of parents regarding organ donation of their brain dead child: A Greek study Social Science & Medicine 64: 2, 439-450.
Dodd-McCue D. Cowherd R. Iveson A. and Myer K. (2006) Families responses to donor designation in donation cases: a longitudinal study. Progress in Transplantation 16: 2, 150-154.
Haddow G. (2005) The phenomenology of death, embodiment and organ transplantation. Sociology of Health & Illness 27:1, 92-113.
Human Tissue Authority (2006) Code of practice 2: Donation of organs, tissue and cells for
transplantation.
http://www.hta.gov.uk/_db/_documents/2006-07-04_Approved_by_Parliament_-_Code_of_Practice_2_-_Donation_of_Solid_Organs.pdf (Accessed 10.10.07)
Long T. and Sque M. (2007) An update on initiatives to increase organ donation: A UK perspective. British Journal of Transplantation 2:2, 10 -15.
Long T. Sque M. Payne S. (2006) Information sharing: its impact on donor and nondonor families’ experiences in hospital. Progress in Transplantation 16:2, 144 -149.
Sque M. Long T. and Payne S. (2003) Organ and tissue donation: Exploring the needs of families. BODY www http://body.orpheusweb.co.uk/.
Sque M. Long T. and Payne S. (2005) Organ donation: Key factors influencing families’ decision-making. Transplantation Proceedings 37: 2, 543-546.
Sque M. Long T. and Payne S. (2006) Exploring the end of life decision-making and hospital experiences of families who did not donate organs or tissues for transplant operations. Final Report for UK Transplant. February.
Sque M. Payne S. and Macleod Clark J. (2006) Gift of life or sacrifice?: Key discourses to understanding decision-making by families of organ donors. In Sque M. and Payne S. (eds) Current issues in organ donation and transplantation (special issue) Mortality 11: 2, 117-132.
Sque M. and Payne S. (1996) Dissonant Loss: the experiences of donor relatives. Social Science & Medicine 43: 9, 1359-1370.
Sque M. and Payne S. (eds) (2007) Organ and tissue donation: an evidence base for practice. Open University Press, Maidenhead.
Sque M. Payne S. and Vlachonikolis I. (2000) Cadaveric donotransplantation: nurses’ attitudes, knowledge and behaviour. Social Science & Medicine 50: 4, 541-552.
Sque M. (2007) A dissonant loss: The bereavement of donor families. In Sque M. and Payne S. Organ and tissue donation: an evidence base for practice. Maidenhead, Open University, 59-81.
Sque M. and Wells J. (2004) Organ donation: Helping patients and families make choices. In Payne S. Seymour J. and Ingleton I. (eds) Palliative care nursing: Principles and evidence for practice. Open University Press, Maidenhead, 472-489.
Wells J. and Sque M. (2002) ‘Living choice’: The commitment to tissue donation in palliative care. International Journal of Palliative Nursing. 8: 1, 22-27.
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Contact name and detail if you would like further information on this topic and associated research:
Dr Magi Sque, Senior Lecturer, School of Nursing, University of Southampton
m.r.sque@soton.ac.uk
