Cadaveric (deceased) Organ Donation: Family Belongings Dr. Gill Haddow Research Fellow

1. Cadaveric (deceased) Organ Donation: Family Belongings Dr. Gill Haddow Research Fellow ESRC Innogen Centre University of Edinburgh gill.haddow@ed.ac.uk

2. Do “I” belong to my “family”? • What is this “I”? (My body? My self?) “Science tells us the brain, and no one would naturally give such an answer. Much of the time, I think, we feel ourselves concentrated just behind the eyes; When someone says “look at me” we look at his [sic] face - usually the eyes, expecting there to encounter the person or at least his [sic] clearest self-manifestation” (Kass 1985: 23). • What does “belong” mean? (ownership or origins?) • Does (previous) family relationships affect what happens to the “I” after death...

3. BACKGROUND: • Cadaveric donation “Opt-in” (post BSD): signing a donor card, driving licence, GP registration, NHS Organ Donor Register (ODR), • ~70% of the UK willing to donate (British Kidney Patient Association 1992 - onwards ). • < 30 % registered/discussed it with family. • No gender difference - variation via age, socio-economic group, education, ethnicity and religion • Health professionals ascertain families “lack of objection” or “authorisation” * • 6 500 a year awaiting an organ. • UK ODR lowest in Europe (13.1 pmp)

4. “Success” of transplantation 2 corneas (restore sight) 2 each of the inner ear, the hammer, anvil, stirrup (some deafness) 1 jawbone (facial reconstruction) 1 heart & heart pericardium (the sac that surrounds the heart is made of tough tissue that can be used to cover the brain after surgery) 4 heart valves 2 lungs 1 liver 2 kidneys 1 pancreas 1 stomach (experimentally) 206 separate bones 2 hip joints ~ 27 ligaments and cartilage ~ 20 square feet of skin > 60 000 miles of blood vessels, (veins to re-route blood around blockages) ~ 90 ounces of bone marrow (variety of other diseases e.g. Leukaemia)

5. …from “inner” to “outer” space.

6. STUDY AIM/METHOD: • Relatives refusal rate (30% rising?) • Little is known sociologically about donor and non-donor beliefs, experiences and attitudes. • Retrospective, qualitative interview study. • 19 interviews with donor relatives (1999-2001) • 3 different Scottish regions • Ethically approved • All names are changed

7. OVERVIEW: • Family Relationships & “Embodiment” (relationship between my body and identity, self, person etc… ) • I am a body (Holistic) • I have (own?) a body (Dualistic) • Affected decision to donate & which organs • But family bonds important when choosing to donate.

8. DONORS (n=19) : White, British. Aged 35-54 years 9 men & 10 women. Protestant/catholic. DECEASED (n=15) Aged 15 – 74 yrs. Female (n=10). Sudden and tragic deaths mainly from internal/external brain trauma. FAMILY OF ORIGIN: Four Mothers Two Fathers A sister One Aunt FAMILY OF PROCREATION Two wives Six Husband Three Sons/Daughter-in-Law. Donor Families:

9. STATUS OF NEWLY DEAD: 1. DUALISM “I have” • 7 “medical respondents” in sample “[F]or me I just look at it like, somebody that is brain dead, whatever is just like a broken car. A broken car itself is not going to be of use, but you can cannibalise the parts for something else” (Donor Father).

10. STATUS OF NEWLY DEAD: 2. HOLISTIC “I am” • Emphasis on previous identity and relationship: “…cos they[sisters] saw their brother lying ….and couldn’t figure out why they were going to cut him” (Donor Mother). “...its too much like a butcher’s shop to me…Let’s have half pound of heart, three quarters of a pound of liver…”(Donor Husband).

11. ORGAN RESTRICTION • Two-thirds had concerns about harming identity and integrity. • 4 initially refused. • A third refused donation of eyes. • Cosmetic concerns and “windows of soul.” • Symbolic association with personhood and significant role in communication. • Unlike previous research (Fulton et al. 1987) no restriction of heart. • Sight and In/Sight?

12. ORGAN DONATION V's POSTMORTEM? • Comparison between OD & PM - latter acceptable (Sanner 1994) • “Public scandal” retention of child organs • Difference between “Donation” & “Retention “[W]e have to bury the heart, then we have to bury the bits as well. It’s like, I hate to say it, but its like burying bits of meat I’m afraid. Its’ dead organs, it’s not the person” (Donor Son). • Detachment or Disrespect?

13. ENTWINED EM/BODIES Dualism (I have) & Holistic (I am) = artificial distinction. “My initial reaction was no…I mean, I don’t have a problem with it (organ txp) for myself. But when its your child, I don’t know. You kind of, you think, you know just the fact that they were going to cut her open and take her heart out” (Donor Mother).

14. CONTINUING BONDS WITH THE DECEASED/BODY (1) • Parents un-relinquished bond with child requires further corroboration? • Psychosocial issues for bereaved mothers (Cleiren and Van Zoelen 2002). • Emotional/Symbolic bonds unbroken • Death not the end of social existence.

15. CONTINUING BONDS WITH THE DECEASED/BODY (2) “I just feel that Brian’s (husband) still with me. And it’s strange because, yet I don’t suppose it’s strange [crying]. If I’m maybe concerned about something and I think ‘I don’t know what to do’ …I’ll chat to Brian, and would think about it myself, and then between us, we’d come to something. It’s difficult for me to doing it on my own (Donor, Wife).

16. Positive about Transplantation & Donation • All said recipients benefited from a transplant • Willing to accept a transplant. • Half said immediate positive reaction and some made decision immediately: “the decision had been made like years before. She died I would have donated. If I died she would have donated” [Donor, Husband]. • Half respondents and donors had donor cards.

17. Obligation and Duty to the Deceased Initial donor refusals (n=3) agreed as knew deceased carried a card/previous familial discussion: “As I say it was my mum’s wishes so if I went against it I’d probably feel worse, not doing it would have been against her wishes, but this was what she expressly said she wanted to do.” [Donor, Son] “It was what she wanted. That was the size of it. I was not for it. I’d said to her many times that I would tear the card [donor] up and she said she would come back and haunt me” [Donor, Husband].

18. Reciprocation 1. Donor families’ future need: If I was not too well I’d like to think somebody would help me [Donor, Husband]. 2. Emotional benefit from helping others and/or carried out the deceased’s wishes (n=15): I think that the fact that people have lived because of her, you know? I think that that is a very small consolation you know? If you can call it that. It is a very small consolation, but it is a consolation [Donor, Mother].

19. Family Altruism 1. Deceased “charitable” tendencies: “…your fatherwasn’t a selfish person. He would help you so he was helping other people” [Donor, mother]. 2. Recognition/desire to alleviate suffering of another: Just to help others. That’s all. Just to help others. To give them a chance in life. They are so ill and they might never get another chance again [Donor, Husband].

20. Final Thoughts: • Inherent tension in donation/txp • Cultural beliefs variable - but holistic/dualistic articulated. • Relatives maintained ties to deceased. • Despite corporeal death = relationship continues identity exists in social and family relations • Not just about death but the experience of life and the strength of previous family relationships.

21. Thank you.. …for listening. ..to the donor and non-donor families and the transplant co-ordinators and health professionals in Edinburgh and Glasgow who made the study possible.