2 complex case studies in uk organ donation dr dale gardiner deputy n-clod

2 Complex Case Studies in UK Organ Donation

Dr Dale GardinerDeputy N-CLODwww.clodlog.com

http://www.clodlog.com/

Session Outline

1. A red flag case

South Central Regional Collaborative, May 2014

2. The most complicated ethical case of my career, to date…

Essential Medical Facts• 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.


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… the diagnosis of death was withdrawn.


What did they do now?• Family contacted• Coroner re-contacted• DCD progressed the next day

–Breathed–Following withdrawal, 45 mins to

asystole


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.


• 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.


Myotonic dystrophy as a confounder to testing

Recommendations1. 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.


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 reflex2. Testing < 24 hours where aetiology primarily anoxic damage3. Therapeutic hypothermia (24 hour observation period

following re-warming to normothermia recommended)4. Patients with pre-existing neuromuscular disorders5. Steroids given in space occupying lesions such as abscesses6. Prolonged fentanyl infusions7. Aetiology primarily located to the brain-stem or posterior

fossa


Session Outline

1. Myotonic dystrophy as a confounder to the diagnosis of death using neurological criteria, a red flag case

2. The most complicated ethical case of my career, to date…


Essential Medical Facts• 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 admission14 weeks pregnant


Challenges

• ‘Brain dead’• Pregnant• Eastern European• Partner from a different religion• Organ Donation


Ethical challenges1. 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?


Jahi McMathUSA


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1993


(Feldman et al, 2000)

24 weekslegal for abortion

26 weeksviable just

28 weeksviable

34 weekshealthy

UK


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Marlise MunozUSA

Mother as incubator?



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The family approach: 3 key stages

Planning

Confirming understanding and acceptance of loss

Discussing donation

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.

22Organ Donation Past, Present and Future

X

http://www.odt.nhs.uk/


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2 complex case studies in uk organ donation dr dale gardiner deputy n-clod

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