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.