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Medical ethics and ceilings
of care in hepatology
Philip Berry
Consultant Hepatologist
Guy’s and St Thomas’ NHS
Foundation Trust
@philaberrywww.illusionsofautonomy.worpdress.com
Outline
At the bedside: nihilism vs opportunity
A look at bias
The problem with prognosis
Defining futility
Choice and fate
Finding an ethical path
At the bedside: nihilism vs
opportunity
How many times have
they been told to stop?
This is end-stage disease,
the prognosis is awful
They’re not a transplant
candidate anyway
I have a responsibility to
use health resources
sensibly
I used to try hard in these
cases, but I’ve seen what
happens too many times
now...
They’re so young… they
have a lot of life to live yet
There are children
This is the first severe
presentation
It might be reversible
They’re not alcoholic by
choice
Has anyone actually tried
to treat the addiction?
I am not a gatekeeper, I’m
a doctor
Verrill et al, Addiction 2009
‘Good Medical Practice’
“The investigations or treatment you provide or arrange
must be based [ ] on your clinical judgement about
the likely effectiveness of the treatment options.
“You must not refuse or delay treatment because you
believe that a patient's actions have contributed to
their condition...”
Indiscriminate,
‘give everyone
a chance, full
organ
support…’
Cirrhosis and
ICU don’t
mix, look at
the data…
Heroic ‘saves’
Pushing the therapeutic envelope
Higher total burden of care
Higher cost
Poor relationship with ICU?
Failure to engage early in EoL discussions?
Lost opportunities in reversible cases
No-one is going to argue; matches expectation of
cirrhosis
...but when you do go to ICU, they listen
Diagnosing dying: a self-fulfilling prophecy
Infectious nihilism
Indiscriminate,
‘give everyone
a chance, full
organ
support…’
Cirrhosis and
ICU don’t
mix, look at
the data…
Heroic ‘saves’
Pushing the therapeutic envelope
Higher total burden of care
Higher cost
Poor relationship with ICU?
Failure to engage early in EoL discussions?
Lost opportunities in reversible cases
No-one is going to argue; matches expectation of
cirrhosis
...but when you do go to ICU, they listen
Diagnosing dying: a self-fulfilling prophecy
Infectious nihilism
Case-by-case decision making
Discriminating ‘end stage’ vs ACLF
Early expectation management (families and colleagues)
Evidenced based advocacy
Realistic limits
Genius...
And saint?
A look at bias
Neuberger et al, BMJ 1998
Liver case
Opening question
‘League table’ of advocacy
Mean
advocacy
score
Breakdown of advocacy scores for ALD case
No. of
respondents
Advocacy score selected
Ceilings
Reasons for not escalating Ceilings of care
% respondents % respondents
Ceilings
Rationing considerations
Rationing considerations
?
Jalan et al, J Hep 2014
The problem with prognosis
Carvellas & Bagshaw, Current
Opinion in Critical Care 2012
CLIF-ACLF score
150 µmol/l
160 mmol/l
N=128 patients, mortality 54%
Cholongitas et al, J Gastro Hep 2008
Score Admission ROC 48hr ROC
CPS 0.75 0.78
MELD 0.78 0.86
APACHE II 0.75 0.78
SOFA 0.81 0.88
FOS 0.79 0.85
Cholongitas et al, J Gastro Hep 2008
TAZ PRED
Defining futility
Thomson et al, Aliment
Pharmacol Ther 2010
Survival stratified according to ACLF
grade at day 3-7
Gustot et al, Hepatology 2015
“The best time point to define the clinical course of ACLF was
between the third and seventh day after ACLF diagnosis (d3-7
ACLF).
“Together, these findings suggest [ ] that assessment at day 7
could help to make decisions regarding subsequent
management: continuation and potential LT, or
discontinuation owing to futility.”
• “…organ support should be offered to
those with pre-morbid MELD <15, but
questioned if MELD is >30 and there is
>/= 3 organ failure...”
“…exceptionally high degrees of confidence
in mortality risk are a prerequisite, and our
assessment suggests that mortality may not
be as reliably predicted as described… more
complex algorithms may be required in
determining optimal time limitation.”
McPhail et al, Hepatology 2016
Choice and fate
Dependence/injury
• Gender (F > M)
• Genes (aldehyde dehydrogenase 2, PNPLA3, TM6SF2
and MBOAT7)
• Cofactors (iron, α1-AT)
• Social factors
– Abuse
– Parental example
Ball, Addiction 2008
Stickel/Moreno et al, J Hep 2016
Choice and fate
Seeking help: moral responsibility
There is ample time during an alcoholic's life to
comprehend the damage that drink does
The decision to continue drinking must involve a
personal acceptance that they will become ill
Most will be offered an opportunity to engage with
addiction services
Moss, JAMA 1991
Glannon, Medicine & Philosophy 1998
Those who do, but for whom attempts to break the
addiction fail, might be regarded in a more positive
light when they become ill.
Finding an ethical path
 Prognosis at or shortly after admission may not be accurate
 Experience counts, but judgments concerning addiction must
translate to utility calculations
 Rationing healthcare on the ‘shop floor’ is not likely to be just
 Agreement is needed as to what defines futility, and what
constitutes a clinical response to therapy

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Medical ethics and ceilings of care in hepatology

  • 1. Medical ethics and ceilings of care in hepatology Philip Berry Consultant Hepatologist Guy’s and St Thomas’ NHS Foundation Trust @philaberrywww.illusionsofautonomy.worpdress.com
  • 2. Outline At the bedside: nihilism vs opportunity A look at bias The problem with prognosis Defining futility Choice and fate Finding an ethical path
  • 3. At the bedside: nihilism vs opportunity
  • 4. How many times have they been told to stop? This is end-stage disease, the prognosis is awful They’re not a transplant candidate anyway I have a responsibility to use health resources sensibly I used to try hard in these cases, but I’ve seen what happens too many times now... They’re so young… they have a lot of life to live yet There are children This is the first severe presentation It might be reversible They’re not alcoholic by choice Has anyone actually tried to treat the addiction? I am not a gatekeeper, I’m a doctor
  • 5. Verrill et al, Addiction 2009
  • 6.
  • 7. ‘Good Medical Practice’ “The investigations or treatment you provide or arrange must be based [ ] on your clinical judgement about the likely effectiveness of the treatment options. “You must not refuse or delay treatment because you believe that a patient's actions have contributed to their condition...”
  • 8. Indiscriminate, ‘give everyone a chance, full organ support…’ Cirrhosis and ICU don’t mix, look at the data… Heroic ‘saves’ Pushing the therapeutic envelope Higher total burden of care Higher cost Poor relationship with ICU? Failure to engage early in EoL discussions? Lost opportunities in reversible cases No-one is going to argue; matches expectation of cirrhosis ...but when you do go to ICU, they listen Diagnosing dying: a self-fulfilling prophecy Infectious nihilism
  • 9. Indiscriminate, ‘give everyone a chance, full organ support…’ Cirrhosis and ICU don’t mix, look at the data… Heroic ‘saves’ Pushing the therapeutic envelope Higher total burden of care Higher cost Poor relationship with ICU? Failure to engage early in EoL discussions? Lost opportunities in reversible cases No-one is going to argue; matches expectation of cirrhosis ...but when you do go to ICU, they listen Diagnosing dying: a self-fulfilling prophecy Infectious nihilism Case-by-case decision making Discriminating ‘end stage’ vs ACLF Early expectation management (families and colleagues) Evidenced based advocacy Realistic limits
  • 12. A look at bias Neuberger et al, BMJ 1998
  • 13.
  • 16. ‘League table’ of advocacy Mean advocacy score
  • 17. Breakdown of advocacy scores for ALD case No. of respondents Advocacy score selected
  • 19. Reasons for not escalating Ceilings of care % respondents % respondents Ceilings
  • 22. Jalan et al, J Hep 2014 The problem with prognosis
  • 23. Carvellas & Bagshaw, Current Opinion in Critical Care 2012
  • 26.
  • 27. N=128 patients, mortality 54% Cholongitas et al, J Gastro Hep 2008
  • 28. Score Admission ROC 48hr ROC CPS 0.75 0.78 MELD 0.78 0.86 APACHE II 0.75 0.78 SOFA 0.81 0.88 FOS 0.79 0.85 Cholongitas et al, J Gastro Hep 2008
  • 29.
  • 32. Thomson et al, Aliment Pharmacol Ther 2010
  • 33. Survival stratified according to ACLF grade at day 3-7 Gustot et al, Hepatology 2015
  • 34. “The best time point to define the clinical course of ACLF was between the third and seventh day after ACLF diagnosis (d3-7 ACLF). “Together, these findings suggest [ ] that assessment at day 7 could help to make decisions regarding subsequent management: continuation and potential LT, or discontinuation owing to futility.”
  • 35. • “…organ support should be offered to those with pre-morbid MELD <15, but questioned if MELD is >30 and there is >/= 3 organ failure...”
  • 36. “…exceptionally high degrees of confidence in mortality risk are a prerequisite, and our assessment suggests that mortality may not be as reliably predicted as described… more complex algorithms may be required in determining optimal time limitation.” McPhail et al, Hepatology 2016
  • 37. Choice and fate Dependence/injury • Gender (F > M) • Genes (aldehyde dehydrogenase 2, PNPLA3, TM6SF2 and MBOAT7) • Cofactors (iron, α1-AT) • Social factors – Abuse – Parental example Ball, Addiction 2008 Stickel/Moreno et al, J Hep 2016
  • 39.
  • 40. Seeking help: moral responsibility There is ample time during an alcoholic's life to comprehend the damage that drink does The decision to continue drinking must involve a personal acceptance that they will become ill Most will be offered an opportunity to engage with addiction services Moss, JAMA 1991 Glannon, Medicine & Philosophy 1998 Those who do, but for whom attempts to break the addiction fail, might be regarded in a more positive light when they become ill.
  • 42.  Prognosis at or shortly after admission may not be accurate  Experience counts, but judgments concerning addiction must translate to utility calculations  Rationing healthcare on the ‘shop floor’ is not likely to be just  Agreement is needed as to what defines futility, and what constitutes a clinical response to therapy