Cadaveric deceased Organ Donation: Family Belongings

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• Cadaveric (deceased) Organ Donation Family
  Belongings
• Dr. Gill Haddow
• Research Fellow
• ESRC Innogen Centre
• University of Edinburgh
• gill.haddow_at_ed.ac.uk

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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...

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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 ).
• lt 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)

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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
• gt 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)

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from inner to outer space.
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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

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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.

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Donor Families

• DONORS (n19)
• White, British.
• Aged 35-54 years
• 9 men 10 women.
• Protestant/catholic.
• DECEASED (n15)
• Aged 15 74 yrs.
• Female (n10).
• 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.

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STATUS OF NEWLY DEAD 1. DUALISM I have

• 7 medical respondents in sample
• For 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).

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STATUS OF NEWLY DEAD 2. HOLISTIC I am

• Emphasis on previous identity and relationship
• cos theysisters saw their brother lying .and
  couldnt figure out why they were going to cut
  him (Donor Mother).
• ...its too much like a butchers shop to
  meLets have half pound of heart, three quarters
  of a pound of liver(Donor Husband).

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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?

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ORGAN DONATION V's POSTMORTEM?

• Comparison between OD PM - latter acceptable
  (Sanner 1994)
• Public scandal retention of child organs
• Difference between Donation Retention
• We have to bury the heart, then we have to
  bury the bits as well. Its like, I hate to say
  it, but its like burying bits of meat Im afraid.
  Its dead organs, its not the person (Donor
  Son).
• Detachment or Disrespect?

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ENTWINED EM/BODIES

• Dualism (I have) Holistic (I am) artificial
  distinction.
• My initial reaction was noI mean, I dont have
  a problem with it (organ txp) for myself. But
  when its your child, I dont 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).

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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.

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CONTINUING BONDS WITH THE DECEASED/BODY (2)

• I just feel that Brians (husband) still with
  me. And its strange because, yet I dont
  suppose its strange crying. If Im maybe
  concerned about something and I think I dont
  know what to do Ill chat to Brian, and would
  think about it myself, and then between us, wed
  come to something. Its difficult for me to doing
  it on my own (Donor, Wife).

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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.

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Obligation and Duty to the Deceased

• Initial donor refusals (n3) agreed as knew
  deceased carried a card/previous familial
  discussion
• As I say it was my mums wishes so if I went
  against it Id 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. Id 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.

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Reciprocation

• 1. Donor families future need
• If I was not too well Id like to think somebody
  would help me Donor, Husband.
• 2. Emotional benefit from helping others and/or
  carried out the deceaseds wishes (n15)
• 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.

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Family Altruism

• 1. Deceased charitable tendencies
• your father wasnt 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. Thats 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.

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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.

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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.