Post on 19-Jun-2015
description
What Patients Want after
Medical Error
Rick Iedema
Professor & Director
Centre for Health Communication
University of Technology, Sydney
Australia
IIR 5th Annual Obstetric Malpractice
Conference
20-21 June 2013
History of disclosure in Australia
• 2003 Australian Open Disclosure Standard
• 2005-7 ACSQHC pilot involving 42 hospitals
• 2007-8 UTS-CHC evaluation of the pilot
• 2009-11 “100 patient stories project”
• 2011-12 ACSQHC drafting “Open Disclosure
Framework‟
• 2013 ACSQHC publication of “Open Disclosure
Framework‟
• 2014 integration of OD Framework into National
Q&S Standards
What do patients want following
unexpected outcomes? The 100 patient stories project
• Funded by the Australian Commission on Safety and Quality in
Health Care (ACSQHC)
• Aims:
– analyse 100 patients’/relatives’ experiences of disclosure
– develop ‘Indicators of Effective Open Disclosure’
– initiate national stakeholder consultation about the indicators
– design 2 questionnaire survey tools (1 patient/family, 1 staff)
• Final report presented to the ACSQHC in July 2010
• Data resource (including video clips from 20 interviews) prepared for
ACSQHC in 2011
Australian Commission on Safety & Quality in Health Care.
The Australian Open Disclosure Framework. Sydney:
Australian Commission on Safety & Quality in Health Care,
2013.
Patients want to be able to talk
about unexpected outcomes
Patients want to be able to talk
about unexpected outcomes
A (vanishing) legal risk?
• “… of the 3250 closed claims in the year covered, only
3% were finalised through a court decision. The other
97% were either abandoned or settled, in about equal
measure”.
• “Pretrial processes, case management, improvements in
early collection of data, expert opinions and evidentiary
statements all help to narrow the issues well before a
final hearing. The chances of earlier settlement are
increased.”
• “Courts have a protective role, such as approving
treatment for patients without capacity to make their own
decisions.”
Madden B. (2013) Vanishing trials. Medical Journal of Australia. (11 June
2013)
Fewer trials … less independent
scrutiny of how cases are
handled and settled?
Incident, harm, abandonment
• Uncomplicated pregnancy; labour at term
• Baby’s CGT tracings misread; significant heart decelerations
and baby distress not picked up for 8 hours; insufficient
oxygen
during birth process; medical
intervention ceased after 3
days; baby died 28 days later
• Providers unwilling to disclose the cause of the baby’s
deterioration; try to implicate parents in the problem;
inadequately attentive to baby’s distress and medication
needs during the 25 days it takes to die
• Family’s request for coronial inquest turned down
• State’s Complaints Commission concludes: ‘Professional
standards were upheld’
Complaints Commission
response
Making it worse …
• “It was very guarded … they were all very
guarded. And we subsequently – when I got the
files and reviewed them, there’s notations in the
files saying. “Be careful when you speak with
this family. Make sure there’s two staff members
present when you speak with this family”. Things
like that.” [mother]
Inverse proportionality?
Pe
rce
ive
d le
ga
l risk
Preparedness to be open
0 = low
5 = high
Plaintiff’s advice
• “William’s death certificate appears to contain several errors. Neither
“neonatal encephalopathy” or “perinatal compromise”, are found
within ICD-10. Additionally, the meaning of “perinatal compromise”
is unclear and does not identify what the “compromise” was.
• Firstly, ‘Neonatal encephalopathy’ is incorrect as the condition
directly leading to death, as this was a secondary condition and
followed the birth injury.
• There was a delay in the delivery of William, after rupture of
membranes, which lead to his asphyxia. Perinatal asphyxia (lack of
oxygen to the brain during labour) is the most common cause of
neonatal encephalopathy. The damage to the baby results in
difficulty with initiating and maintaining respiration, depression of
tone and reflexes, sub normal level of consciousness and seizures.
These problems are incompatible with life.”
The 100 patient stories study:
Attitudes towards litigation
Redressing harm – ‘We had to sue’
Interviewer: And tell me [name], was the thought of going down the litigation track,
was it for the pain?
P1 - “...Oh I had to move. I had to move from the country to Adelaide
to be closer to a hospital because of it. I actually had to uproot my
whole life... But you know, the funniest part about it was actually the
doctor who told me to sue...They actually told me to sue.” [082 -
100PT_MS_200510082]
P2 - “I mean this has necessitated us to now sell our residential
home. So not only is he trying to get better and we‟ve now had to
sell our house because we can‟t afford the mortgage. So it‟s got a
terrible, terrible knock on effect.” [091 - 100PT_MN_270510091]
But many chose not to sue …
• “And I jokingly said to them: “Oh you’ve given me tainted blood, who
can I sue? You or the blood bank?” They said “madam why would
you think of suing us?” I said “because I was a solicitor for 40 years
dear. But don’t panic I won’t do it, I know how long it will take, I’ll
probably be dead by then”. [070 - 100PT_MN_190510070]
• “I had so many people that said you know you should’ve sued them
you should have done this and that. And I said you know what, one I
couldn’t go through with it because I just, after losing [name son] you
can barely function.” [042 - 100PT_MN_220310042]
• “We talked to a solicitor about it...So we got that and then we
decided that, the solicitor said “look you’re going to go through a lot
of anxiety” [057 - 100PT_Q_120510057]
• “ And, I will be quite honest with you, if I had the money, I would
have gone a lot further with this. But we did not have the money to
be paying any legal costs.” [052 - 100PT_N_15041052]
NSW Clinical Excellence Commission. Review of the Implementation of the NSW Health Open
Disclosure Policy arising from the 2009 NSW Ombudsman’s Report. Sydney: Clinical Excellence
Commission, 2012, p. 33.
Disclosure ~ two overarching
dimensions
• Material restoration – negotiating resource
obligations in light of the implications of the harm
caused
– What financial-practical support do service users
need to cope with and recover from the harm?
• Symbolic restoration - understanding health
service users’ relational expectations
– How do service users want service providers to
respond and proceed?
– What scenarios do service users invite providers to
engage in?
Conclusion
• “Just disclosure”*
– Provider(s) will participate in the scenarios which
harmed patients/relatives invite them to enact
– Providers act accountably
• they behave as ‘model litigants’;
• they recognise the conflict of interest that is
inherent in their role as disclosers providers;
• they welcome assistance from clinically-legally
trained outsiders to scrutinise disclosure
communication & compensation / settlement
scenarios.
*Iedema, R., Piper, D., Allen, S., Beitat, K., & Hor, S. (under review 2013). Reframing
accountability for what goes wrong in health care as “just disclosure”. Joint Commission Journal
for Quality and Patient Safety.
References Iedema R et al (under review) Reframing Accountability for What Goes Wrong in Health Care
as “Just Disclosure”. US Joint Commission Journal of Quality and Patient Safety.
Iedema R, Allen S. (2012) Anatomy of an incident disclosure: On the importance of dialogue.
US Joint Commission Journal of Quality and Patient Safety. 38(10):435-42
Iedema, R., S. Allen, et al. (2011). The ‘100 Patient Stories’ Project: Patients’ and family members’
views of how clinicians (should) enact Open Disclosure. British Medical Journal.
Iedema, R, Allen, S, Britton, K, and Gallagher, T (2011) What do patients and relatives know
about problems and failures in care? BMJ Qual Saf 12:198-205
Iedema, R. (2010). "Attitudes Toward Error Disclosure: The Need to Engage with Systems
Thinking." The Joint Commission Journal on Quality and Patient Safety 36(3): 99-100.
Iedema, R., C. Jorm, et al. (2009). "Practising Open Disclosure: Clinical Incident Communication
and Systems Improvement." Sociology of Health & Illness 31(2 ): 262-277.
Iedema, R., C. Jorm, et al. (2009). "A New Structure of Attention? Open Disclosure of adverse
events to patients and families." Journal of Language & Social Psychology 28(2): 139-157.
Iedema, R., I. Curtiss, et al. (2008). Open Disclosure. Windows on quality and safety in health care
2008. Sydney, Australian Commission on Safety and Quality in Health Care: 61-72.
Iedema, R., R. Sorensen, et al. (2008). "Patients’ and family members’ experiences of Open
Disclosure following adverse events." International Journal for Quality in Health Care 20(6):
421-432.
Iedema, R., N. Mallock, et al. (2008). Final Report: Evaluation of the National Open Disclosure Pilot
Program. Sydney, The Australian Commission on Safety and Quality in Health Care.
Iedema, R., N. Mallock, et al. (2008). "The National Open Disclosure Pilot: Evaluation of a Policy
Implementation Initiative." Medical Journal of Australia 188(2008): 397-400.