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Cadaveric deceased Organ Donation: Family Belongings

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Three Sons/Daughter-in-Law. STATUS OF NEWLY DEAD: 1. DUALISM 'I have' ... It's difficult for me to doing it on my own (Donor, Wife) ... – PowerPoint PPT presentation

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Title: Cadaveric deceased Organ Donation: Family Belongings


1
  • Cadaveric (deceased) Organ Donation Family
    Belongings
  • Dr. Gill Haddow
  • Research Fellow
  • ESRC Innogen Centre
  • University of Edinburgh
  • gill.haddow_at_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 ).
  • 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)

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
  • 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)

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
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.

9
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).

10
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).

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
  • 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?

13
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).

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 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).

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 (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.

18
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.

19
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.

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.
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