- incident
an unplanned event that results in an undesirable outcome for the patient.
When a patient experiences harm as a result of an incident, it is now mandatory in most Australian health services that they are told what went wrong and why, a practice referred to as incident disclosure or ‘open disclosure’. The policy that mandates incident disclosure is the Australian Open Disclosure Framework (Australian Commission on Safety and Quality in Health Care, 2013). This framework is a component of the National Safety and Quality Health Service Standards against which most health services (including hospitals, day procedure clinics and dental services) are to be accredited (Australian Commission on Quality and Safety in Health Care, 2012). Open disclosure is part of Standard 1: ‘Governance for safety and quality in health service organisations’. This chapter discusses the kind of communication that takes place when things go wrong in care. It discusses the requirements set out in the framework and presents research findings about clinicians’ understandings and uptake of open disclosure.
Introduction
Open disclosure refers to open communication about unexpected outcomes in health care. Open disclosure should be initiated when an incident that causes harm to the patient comes to the attention of health service providers, the patient or other stakeholders. Open disclosure involves (1) the clinician(s) communicating to the patient an explanation for what happened, (2) an apology, (3) an opportunity for the patient to recount their experience, (4) a plan for the patient, and (5) a practice improvement plan (Australian Commission on Safety and Quality in Health Care, 2013). Each of these five elements is equally central to open disclosure.
- apology
a statement of regret that includes the word ‘sorry’. There is a difference between ‘We are sorry that this happened’ and ‘We are sorry that we did the wrong thing’. The latter expression is admissible in some states’ courts of law as constituting an acknowledgement of liability (all states except New South Wales and the Australian Capital Territory).
The open disclosure policy was first formulated in Australia around 2001. At this time there were many pressures on stakeholders in health care to improve the quality and safety of treatment processes. In part, pressure resulted from the publication of the Quality in Australian Health Care (QAHC) study in 1995 (Wilson et al., 1995). This study revealed that between 6% and 16% of acute healthcare episodes involve healthcare incidents: errors and failures attributable to the care process or to clinicians. On the basis of its findings, the QAHC study estimated that 18 000 patients might be dying or be permanently disabled due to incidents across the whole of Australia each year.
The QAHC study obliged policy-makers to broaden their attention from achieving budget efficiency to raising the quality and safety of health care. When a large Australian healthcare insurer (HIH) collapsed in the late 1990s (due to financial mismanagement – not due to exorbitant compensation payouts to harmed patients), this collapse produced sudden rises in clinicians’ and services’ insurance premiums. To keep clinicians’ and services’ insurance payments in check and to reduce the frequency of clinical incidents, a number of policy steps were taken. One of these was the introduction of the open disclosure policy. If clinicians are open and honest about clinical incidents, the policy reasoned, they will be better able to learn from mistakes, and patients will be less likely to sue. The introduction of the open disclosure policy was a radical strategy: it acknowledged the importance of consumers’ right to error- and failure-free health care, and the need for clinicians to be transparent about service shortcomings and to be serious about service improvement.
The 2003 publication of the Australian Open Disclosure Standard (Australian Council for Safety and Quality in Health Care, 2003) resulted from an initiative of the then Australian Council for Quality and Safety in Health Care (now the Australian Commission for Quality and Safety in Health Care). The council convened a group of clinicians, consumers, policy-makers, insurers and lawyers, asking them to draw up principles to provide guidance to those charged with communicating ‘unexpected outcomes’ (that is, incidents) to patients. Then, in 2013, the Australian Commission on Quality and Safety in Health Care issued an updated version of the standard: the Australian Open Disclosure Framework (Australian Commission on Safety and Quality in Health Care, 2013). This framework integrates several years of research conducted in Australia on the desirability, success and effectiveness of incident disclosure communication, particularly for patients and their families (Iedema, Allen, Britton, Grbich et al., 2011; Iedema et al., 2008).
- incident disclosure
the practice of communicating to patients about what went wrong and why, when an incident has occurred.
Research findings indicated that patients and families often had different views to clinicians about what constitutes an incident, or which aspect of an incident is most important. The revised framework has incorporated this research by adding the opportunity for a patient to relate their experience of the incident as an essential component of incident disclosure, equal in importance to the factual explanation provided by clinicians. this framework forms part of the National Safety and Quality Health Service Standards (NSQHS) (Australian Commission on Quality and Safety in Health Care, 2012). This means that most healthcare services, including hospitals, day procedure clinics and dental services, must be formally accredited for their adherence to and performance on healthcare incident disclosure. Although open disclosure discussions are unique, based on the specifics of the incident, they share the key components set out in the ‘Key components of open disclosure discussions’ feature below. Note that these elements may be discussed in one or more meetings between the health service and the patient, family and carers.
- open disclosure
a nationwide policy that requires clinicians to be open and honest with patients about incidents and health service-caused harms.
| Key components of open disclosure discussions |
|---|
| 1. Introductions |
| The patient, their family and carers are told the names and roles of everyone attending the meeting, and this information is also provided in writing. |
| 2. Saying sorry |
| A sincere and unprompted apology or expression of regret is given on behalf of the healthcare service and clinicians, including the words, ‘I am’ or ‘we are sorry’. |
| 3. Factual explanation: providers |
| A factual explanation of the adverse event is provided, including the known facts and consequences of the adverse event, in a way that ensures the patient, their family and carers understand the information. |
| 4. Factual explanation: patient, family and carers |
| The patient, family and carers have the opportunity to explain their views on what happened, contribute their knowledge and ask questions. |
| 5. Personal effect of the adverse event |
| The patient, family and carers are encouraged to talk about the personal effect of the adverse event on their lives. |
| 6. Plan agreed and recorded |
| An open disclosure plan is agreed on and recorded, in which the patient, their family and carers outline what they hope to achieve from the process and any questions they would like answered. This is to be documented and filed in the appropriate place and a copy provided to the patient, their family and carers. |
| 7. Pledge to feed back |
| The patient, their family and carers are assured that they will be informed of any further reviews or investigations to determine why the adverse event occurred, the nature of the proposed process and the expected time frame. |
| 8. Offer of support An offer of support to the patient, their family and carers should include: a. ongoing support including reimbursement of out-of-pocket expenses incurred as a result of the adverse event; b. assurance that any necessary follow-up care or investigation will be provided promptly and efficiently; c. in the relevant settings, clarity on who will be responsible for providing ongoing care; d. contact details for any relevant service they wish to access; e. information about how to take the matter further, including any complaint processes available. |
| 9. Support for patients and staff |
| The patient, their family and carers engages in open disclosure with staff. Staff are supported by their colleagues, managers and health service organisation, both personally and professionally. |
| 10. Other health service organisations |
| In cases where the adverse event spans more than one location or service, relevant clinicians and staff will ensure, where possible, that all relevant staff from these additional institutions are involved in the open disclosure process. |
This case study is derived from an excerpt from an interview conducted with the daughter of a 71-year-old female patient in 2009. The patient suffered from atrial fibrillation, and was found to have some abnormality on her lungs. She was not informed about the nature of this abnormality. She developed pleural fusions requiring a number of attendances at the hospital. She was anxious because she was under the care of the respiratory, cardiology and general medicine departments, with no one appearing to take direct responsibility for her care. Clinicians from these three departments were not communicating with each other, often resulting in lengthy treatment delays.
The patient continued to deteriorate, suffering from weight loss and rising lethargy. Finally, to drain the liquid around her lungs, a ‘pleurodesis’ was performed under the care of the respiratory department, after which she was discharged. Further deterioration led to her being readmitted, but this time as a cardiac patient. The cardiologist, when asked by the patient’s daughter whether ‘there was anything more sinister to worry about’, reassured her that there was not. He explained the problem was that her mother’s heart was not working properly. The patient, however, fearing she had cancer, was very anxious, so much so that her family, worrying that she was depressed, persuaded her to see a counsellor.
Fourteen months after the pleurodesis, the lung specialist recommended and performed a thoracotomy, and diagnosed mesothelioma. This was the first time the family had heard of this diagnosis. As she became even more unwell the patient was nursed at home supported by the palliative care team. At this time family members discovered that the cytology report from the pleurodesis had already suggested that she had mesothelioma. In the 14-month period since the pleurodesis none of the clinicians had informed them of this. At this stage it was too late for treatment by an oncologist and the patient died not long after. This is how the daughter tells the story:
The person that performed the operation at [major hospital]… the pleurodesis in 2008, didn’t tell us, or didn’t tell Mum. The private cardiologist who was communicating with that person who did the pleurodesis, he didn’t tell us, even though I’d asked him if there was anything more sinister. And her GP never said anything either. So, as a result of getting that cytology report, I rang the GP, and asked if he knew. And he said no, he’d never seen that report. I then rang the private cardiologist [and asked] if, in her file, there was any of that information. And the receptionist got Mum’s file out and said, yes, didn’t you know?
And I said, no, I didn’t know. And I said, could you be so kind as to fax me all the relevant documentation from that pleurodesis. And she said she couldn’t fax it to me, but she could fax it to the GP, and I could request it. So I did that, and once I requested it from the GP, he then admitted that he had looked back on his emails, and he had failed to read the email that told him, in 2008, that Mum had suspicions of mesothelioma, and mesothelioma cells. So there’s three sort of different people within the whole system that didn’t divulge that information, and continued to treat her from a heart perspective, when that didn’t seem to be the issue at all.
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