2 Complex Case Studies in UK
Organ Donation
Dr Dale Gardiner
Deputy N-CLOD
www.clodlog.com
Session Outline
1. A red flag case
2. The most complicated ethical case
of my career, to date…
South Central Regional Collaborative, May 2014
Essential Medical Facts
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Female patient in her late 40’s
Admitted to a DGH via ED with T2 Resp Failure
PMHx: myotonic dystrophy, no admissions
Short stay ICU then discharged
In hospital asystolic cardiac arrest
ICU: sedated fentanyl + propofol ≈ 54hours
100 hours off sedation, GCS 3/15, myoclonic
jerks, pupils 4 sluggish, mandatory ventilation
with no spontaneous respirations.
• Normal bloods.
South Central Regional Collaborative, May 2014
Essential Medical Facts
• CT scan revealed: "Evidence of global
hypoxic brain injury.”
• On return from CT scan, she had no
signs of brainstem function – no cough,
no gag, apnoea on ventilator, fixed
pupils 5mm.
• Clinically appeared to cone.
• Death confirmed using neurological
criteria 4 hours later.
South Central Regional Collaborative, May 2014
What transpired next?
• Family consented for organ donation (on ODR)
• Coroner agreed
1a hypoxic brain injury
1b cardiac arrest
1c myotonic dystrophy
• Scout team attended
• Five hours after testing, bronchoscopy on the
ICU for exploration of lung donation stimulated
a patient cough. This was repeatable.
… the diagnosis of death was withdrawn.
South Central Regional Collaborative, May 2014
What did they do now?
• Family contacted
• Coroner re-contacted
• DCD progressed the next day
– Breathed
– Following withdrawal, 45 mins to
asystole
South Central Regional Collaborative, May 2014
Myotonic dystrophy as a
confounder to testing
• Myotonic dystrophy is a rare
and
progressive
neuromuscular disease that
causes weakness.
• Respiratory complications
are secondary to respiratory
and bulbar involvement and
obstructive sleep apnoea.
• Myotonic dystrophy patients
are exquisitely sensitive to
opiates, with reports of
respiratory depression days
after opiates.
Anesthesiology 1993, 79:881–892.
South Central Regional Collaborative, May 2014
Myotonic dystrophy as a
confounder to testing
• We could not find any case reports of brain death testing
in myotonic dystrophy patients, reflecting the rarity of the
condition and the rarity of brain death.
• There is a generic warning about profound neuromuscular
weakness as a confounder to brainstem death testing in
the AoMRC (2008) guidance.
Conclusion
• Despite 100 hours off sedation and seven days from the
asystolic cardiac arrest, we believe it was unsafe to carry
out brainstem death testing at the time performed, owing
to the confounder that myotonic dystrophy brings to the
diagnosis of death using neurological criteria.
South Central Regional Collaborative, May 2014
Recommendations
1.
Routinely waiting a minimum of six hours before testing from
the loss of the last brainstem function, in ALL cases.
2. Additional caution is required in any patient with pre-existing
or concomitant neuromuscular disorders.
a. A more prolonged time for first testing (24 hours)
b. The use of reversal agents should be considered
c. The use of clinical ancillary tests, such as atropine, should
be considered.
d. Consideration that testing cannot be safely carried out in
patients with pre-existing neuromuscular disorders, without
ancillary (blood brain flow) testing.
3. Open and transparent discussion with families, even in these
extreme circumstances, meant that relationships with the
family and the care of the patient were not compromised.
South Central Regional Collaborative, May 2014
Diagnostic caution is advised in the following ‘Red Flag’ patient groups.
(Based on the literature and unpublished case reports.)
For advice in difficult circumstances contact the local or regional Clinical Lead
for Organ Donation or the regional neuro-intensive care unit.
1. Testing < 6 hours of the loss of the last brain-stem reflex
2. Testing < 24 hours where aetiology primarily anoxic damage
3. Therapeutic hypothermia (24 hour observation period
following re-warming to normothermia recommended)
4. Patients with pre-existing neuromuscular disorders
5. Steroids given in space occupying lesions such as
abscesses
6. Prolonged fentanyl infusions
7. Aetiology primarily located to the brain-stem or posterior
fossa
South Central Regional Collaborative, May 2014
Session Outline
2. The most complicated ethical case of my career,
to date…
South Central Regional Collaborative, May 2014
Essential Medical Facts
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Female patient in her 20’s
Admitted with vomiting and altered behaviour
Cardiac arrest that evening
CT scan: right frontal lobe mass and brain shift
Urgent neurosurgery to debulk tumour
Death confirmed using neurological criteria
(brain death) 4 days after admission
14 weeks pregnant
South Central Regional Collaborative, May 2014
Challenges
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‘Brain dead’
Pregnant
Eastern European
Partner from a different religion
Organ Donation
South Central Regional Collaborative, May 2014
Ethical challenges
1. Who has rights over the deceased
body?
2. Could the foetus be viable?
3. If the foetus is potentially viable, who
can decide its fate?
4. Is organ donation still appropriate to
offer?
5. How will the foetus die during organ
donation?
South Central Regional Collaborative, May 2014
Jahi McMath
USA
Ethical challenges
1. Who has rights over the deceased
body?
2. Could the foetus be viable?
3. If the foetus is potentially viable, who
can decide its fate?
4. Is organ donation still appropriate to
offer?
5. How will the foetus die during organ
donation?
South Central Regional Collaborative, May 2014
1993
South Central Regional Collaborative, May 2014
(Feldman et al, 2000)
UK
24 weeks
legal for abortion
26 weeks
viable just
28 weeks
viable
34 weeks
healthy
Ethical challenges
1. Who has rights over the deceased
body?
2. Could the foetus be viable?
3. If the foetus is potentially viable, who
can decide its fate?
4. Is organ donation still appropriate to
offer?
5. How will the foetus die during organ
donation?
South Central Regional Collaborative, May 2014
Marlise Munoz
USA
Mother as incubator?
South Central Regional Collaborative, May 2014
Ethical challenges
1. Who has rights over the deceased
body?
2. Could the foetus be viable?
3. If the foetus is potentially viable, who
can decide its fate?
4. Is organ donation still appropriate to
offer?
5. How will the foetus die during organ
donation?
South Central Regional Collaborative, May 2014
The family approach: 3 key stages
Planning
Confirming
understanding and
acceptance of loss
Discussing
donation
Organ Donation Past, Present and Future
As a standard of best practice, as
a marker of quality practice, the
family approach should be a
collaborative effort between senior
clinical staff and the SN-OD.
22
Ethical challenges
1. Who has rights over the deceased
body?
2. Could the foetus be viable?
3. If the foetus is potentially viable, who
can decide its fate?
4. Is organ donation still appropriate to
offer?
5. How will the foetus die during organ
donation?
South Central Regional Collaborative, May 2014
Ethical challenges
1. Who has rights over the deceased
body?
2. Could the foetus be viable?
3. If the foetus is potentially viable, who
can decide its fate?
4. Is organ donation still appropriate to
offer?
5. How will the foetus die during organ
donation?
South Central Regional Collaborative, May 2014