"Shielding behaviour" : corneal donation in the hospice setting

Abstract

Human organ and tissue transplantation has proven to be a successful method for treating many medical conditions.  However, the demand for organs and tissues is rising.  One group of individuals who could be potential donors are those who die within the hospice setting.  This thesis has examined whether corneal donation is a viable option to be discussed within the hospice setting.  The views and feelings of stakeholders, including patients, bereaved family members, corneal recipients, hospice staff and donotransplant professionals were explored.

Seventeen face-to-face interviews and two focus groups were carried out with participants from the stakeholders’ groups.  Data were analysed using a grounded theory approach.  A substantive theory of ‘Shielding Behaviour’ was developed, which explained stakeholders’ views and feelings. The theory was developed from the integration of five categories: ‘Shielding Behaviour’, ‘Knowing’, ‘Being’, ‘Gatekeeping’ and ‘Choosing’.  ‘Shielding Behaviour’ was identified as the core category as it was the most pervasive theme expressed by participants.

The desire ‘not to do harm’ was essential for participants if corneal donation was to be discussed.  Although there was an acknowledgement that individuals should have choices at the end of a life, corneal donation did not conform to health care professions’ ideals of a ‘good death’.  Participants believed this could be as a direct consequence of insufficient knowledge of donotransplantation and inability to visualise the long term benefits for corneal recipients.  Although participants agreed that individuals should be informed about donation, knowledge and attitudes held by health care professionals affected their ability to make the decision to inform patients and families.

Findings suggest that patients and their families do not object to being informed about, or discussing corneal donation in the hospice setting.  However, to facilitate information exchange and discussion, health care professionals need education to explore their attitudes and increase their confidence in discussing this sensitive issue.

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