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Aust. J. Rural Health (2014) 22, 197–203
Original Research Rural patients’ experiences of the open disclosure of adverse events Donella Piper, PhD,1 Rick Iedema, PhD,2 and Kate Bower, PhD3 1
School of Health, University of New England, Armidale, 2Faculty of Health and School of Health Sciences, University of Tasmania (Sydney campus), and 3Centre for Health Communication, Faculty of Arts and Social Sciences, University of Technology, Sydney, New South Wales, Australia
Abstract Objective: To analyse rural patients’ and their families’ experiences of open disclosure and offer recommendations to improve disclosure in rural areas. Design: Retrospective qualitative study based on a subset of 13 semistructured, in-depth interviews with rural patients from a larger dataset. The larger data set form a nationwide, multisite, retrospective-qualitative study that included 100 semistructured, in-depth interviews with 119 patients and family members who were involved in high-severity health care incidents and incident disclosure. The larger study is known as the ‘100 Patient Stories’ study. Interviews were transcribed verbatim and analysed by one analyst (D.P.) for recurrent experiences and concerns. Setting: Acute care. Participants: A sub-set of 13 of the 100 participants from the ’100 Patient Stories’ study who identified as experiencing an adverse incident in a rural or regional area. Main outcome measures: Patients’ and family members’ perceptions and experiences of health care incident disclosure, as expressed in interviews. Results: Rural patients and clinicians experience additional challenges to metropolitan patients and clinicians in their experiences of health care incidents. These additional barriers include: a lack of resources at small hosCorrespondence: Dr Donella Piper, School of Health, University of New England, Queen Elizabeth Drive, Armidale, New South Wales, 2351, Australia. Email: [email protected] Funding: Funding for this study was awarded by the Australian Commission on Safety and Quality in Health Care. Study design: The study was designed by the Australian Commission on Safety and Quality in Health Care. Independence of researchers: All authors, external and internal, had full access to all of the data (including statistical reports and tables) in the study and can take responsibility for the integrity of the data and the accuracy of the data analysis. Accepted for publication 16 June 2014. © 2014 National Rural Health Alliance Inc.
pitals; delays in diagnosis and transfer; distance between services; and a lack of communication between providers. These challenges impact not only upon how patients and their families experience incidents, but also how open disclosure is implemented. Conclusions: This analysis of 13 of the 100 Patient Stories interviews provides guidance to rural health services on how to conduct open disclosure. KEY WORDS: communication, consumer issue and perspective, patient safety/medical error, rural health policy, safety and quality.
Introduction The Australian Open Disclosure Standard was published in 2003, following endorsement by the Australian Health Minsters’ Conference.1 The intention of the standard is to facilitate more consistent and effective communication after adverse events. It describes the elements of open disclosure as: an expression of regret; a factual explanation of what happened; consequences of the event; and the steps being taken to manage the event and prevent recurrence.2 The Australian Commission on Safety and Quality in Health Care (ACSQHC) launched the new Open Disclosure Framework in May 2013.3 This framework will be an integral component of the ACSQHC’s 2012 National Quality and Safety accreditation standard.4 To date, the 100 patients stories study5 is the only study to measure the actual experiences with the disclosure process on the part of a large cohort of patients and families. The study had two objectives: to understand patients’ and relatives’ experiences of health care incidents and incident disclosure since 2008, and to enrich open disclosure policy with patients’ views of the principles of effective open disclosure.6 Of the 100 Patient Stories interviews with patients and family members, 13 were with patients and/or families from rural areas. Rural patients’ and relatives’ doi: 10.1111/ajr.12124
198
What is already known about this subject: • Overall, patients and family members expect open and early admission that a serious incident has occurred; an apology, an explanation of its causes, an explanation of its consequences for them and their care, and a plan that addresses how similar incidents will be avoided. • No study to date has specifically analysed rural patients’ and their families’ experiences of open disclosure.
experience of open disclosure was the same as those reported by their city cousins: patients and family members felt that the health service incident disclosure did not meet their needs and expectations. They expected better reparation for incident disclosure, more shared dialogue about what went wrong, more follow-up support, input into when the time was right for disclosure and more information about subsequent improvement processes.7 In addition, however, the 13 rural patient stories that formed part of the 100 Patient Stories Project brought to life the extra challenges in delivering health care to rural and remote communities and also the practice of incident disclosure in a rural setting. This article reports on our analysis of these rural and regional interviews.
Method Design The data for this article are subset of the larger ‘100 Patient Stories’ study. In-depth, semistructured audio(and video-) recorded interviews with patients and their families who had experienced a severe to very severe health care incident (involving serious short-term or permanent harm or death) were conducted. Participants had also experienced open disclosure of the harm, sometime between 2008 and 2010. Interview participants were recruited via health services and via an advertisement in the national print media and Internet research companies. In total, 119 interviewees were invited to participate in 100 interviews. Participants were asked to indicate whether the incident occurred in a metropolitan or rural setting. Thirteen of these 100 interviews indicated that the incident described in the interviews occurred in a rural setting.
Participants For this subset of 13 interviews, the health care incidents discussed involved patients ranging from 18 to 91 years
D. PIPER ET AL.
What this study adds: • Incident disclosure does not meet the expectations of rural patients involved in serious incidents. • Rural patients and their families experience additional burdens to their city cousins following an adverse event. • These additional burdens are an important source of information about not only how incident disclosure needs to be conducted and improved in rural areas, but the communication challenges faced by providers and patients in a networked health system.
old with an average age of 57. The majority of patients were men and were admitted via ambulance to their local hospital Emergency Department. The most common incident type was delayed treatment. The most common outcomes were ongoing suffering (five patients) and death (four patients) (Table 1).
Data collection and analysis All 100 patient interviews were conducted, recorded and analysed between 2009 and 2011. Interviews were transcribed verbatim. Transcripts were discourse analysed involving identification of overarching theme domains, cross-thematic relationships and thematic hierarchies (e.g. subthemes ‘anger’ and ‘disappointment’ were co-arranged under the theme ‘emotions’).8 In 2013, one researcher (D.P.) analysed the subset of 13 rural transcripts in order to identify any themes that were particular to rural patients.
Results Rural patients and their families spoke about two overarching issues: the diagnosis, transfer and treatment issues that led to the incident after presentation to the rural hospital, and the open disclosure process they subsequently experienced.
Diagnosis, transfer and treatment Prominent in the interviews was a perceived lack of resources at the local hospital to which the patient initially presented. The lack of training, doctor or equipment at the small rural hospital often meant that patients and their families experienced a delay in diagnosis and treatment. It was not uncommon for a patient to present to the local hospital and have to wait for a © 2014 National Rural Health Alliance Inc.
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TABLE 1:
Overview of rural and regional participants’ age, gender, reason for admission, incident type, severity and outcome
Participant
Patient age group
Patient gender
010 Mother
46–65
Male
016 Family
66–75
Female
030 Patient
26–45
Female
047 Son-in-law
75+
Male
049 Patient
46–65
Male
071 Daughter
75+
Female
081 Patient
46–65
Male
089 Patient
18–25
Male
091 Wife
Unassigned
Male
093 Mother
18–25
Male
098 Patient
46–65
Female
099 Wife
66–75
Male
Reason for admission
Incident type
SAC rating
Outcome or harm
Treatment for existing condition Emergency – admitted via ambulance Caesarean
Delayed treatment
1
Death
Administrative error
1
Death
Delayed treatment; reckless care Fall; medication error
2
Suffering
1
Injury
Medication error
3
Suffering
Wrongful discharge
2
Suffering
Diagnostic error
2
Suffering
Error or complication of medical or surgical procedure Delayed treatment; incorrect treatment Wrongful discharge
1
Injury
2
Disability
1
Suffering
1
Unassigned
1
Death
Emergency – admitted via ambulance Emergency – admitted via ambulance Emergency – admitted via ambulance Emergency – admitted via ambulance Emergency – admitted via ambulance Emergency – admitted via ambulance Emergency – admitted via ambulance Emergency – admitted via ambulance Emergency – admitted via ambulance
Delayed treatment; diagnostic error; wrongful discharge Delayed treatment
SAC 1 includes all clinical incidents where serious harm or death is/could be specifically caused by health care rather than the patient’s underlying condition or illness. SAC 2 includes all clinical incidents where moderate harm is/could be specifically caused by health care rather than the patient’s underlying condition or illness. SAC 3 includes all clinical incidents where minimal or no harm is/could be specifically caused by health care rather than the patient’s underlying condition or illness. SAC, Severity Assessment Code Rating.
doctor to be ‘called in’ simply to authorise transfer to a larger hospital within the health network several hours later. This coupled with travel time to the larger hospital and the wait time at the larger hospital meant that patients and their families perceived there to be problematic delays in diagnosis and treatment and a lack of streamlined access to appropriate medical personnel and equipment. Another prominent theme was distance to services. Examples of quotes demonstrating participants’ concerns about these issues are presented in Table 2. Quotes on a lack of resources centred around three subthemes: first, a lack of or faulty equipment was often seen as a precursor to the incident by some participants; second, other participants experienced a lack of resources in the form of equipment being present but staff not being adequately trained in how to use it; and © 2014 National Rural Health Alliance Inc.
third, participants spoke of lack of resources in the form of being taken by ambulance to a hospital where the absence of a qualified doctor was seen as the precursor to their incident. One interviewee’s statement under the ‘delay in transfer to a larger hospital’ subtheme exemplifies that patients and their families wanted a more streamlined approach between ambulance and the Local Health Network to admission. Having to travel long distances to health services was seen to underpin things going wrong in three main ways. First, if patients were treated at a larger more specialised hospital, the family often felt a sense of being unable to support their loved ones. Second, families of patients who died felt that the seriousness of the patient’s condition and the possibility of deterioration during transfer to a larger hospital were not adequately
200 TABLE 2:
D. PIPER ET AL.
Diagnosis, transfer and treatment themes
Overarching theme
Subtheme
Quote
Lack of resources
Lack of or faulty equipment
‘He said “The scanner is actually broken, the CT scanner . . . he passed away . . . ” I said “Well what actually happened?” And she said “Well we don’t know . . . we think it was a heart attack. . .we were delayed in getting the scan done, well the scanner was broken.”’ Brother, 087 ‘At the local hospital they have a [dialysis] machine, nobody knows how to work it! . . . There were eight people standing around him trying to help him, and the male nurse saying “What do I do now”. . . nobody knew.’ Mother, 010 ‘They [ambulance] took him straight up to the local hospital . . . on this particular day there was no doctor to even call to the hospital . . . why did they take him to X hospital when there was no doctor there?’ Wife, 099 ‘Now my argument is why . . . they would have had his health records, and it was only three weeks before that he’d been at [Hospital A name] in Sydney. He’d had stents put in, he’d had a heart attack. Why didn’t they take him . . . straight to [Hospital B name] where there is a stroke unit, which they finally did that night . . . These small country hospitals . . . I just think they should have a better system where if somebody is having a heart attack, or a stroke or something, they should be then straight away sent to the big regional hospital.’ Wife, 099 ‘And this whole time there was no support for me. And I found that, as an outsider, really, really shocking. I don’t live there. . . There was absolutely no moral support . . . the best he could do was give me a few free parking tickets . . . if I wanted to be accommodated on the hospital premises . . . and he didn’t know how I would feel, at that moment there were 5 men in there and I would have to share a toilet with them . . . Why even suggest that? . . . It was not a good experience.’ Wife, 091 ‘The doctor gave me the impression that if we got him up there and he has his dialysis he’d be alright. So I came home to get his clothes ready and take up the next day. I was only home about an hour I suppose and the social worker rang me. She said to me: “Have you got anybody there?” and I said “No I haven’t, why? What do you mean?” She said . . . “Well they’re working on Dave now”. And oh God, as soon as she said “working on Dave” I thought “go”. So I got off the phone, I didn’t know how to get to [Hospital name] . . . there was no one here, no one I could ask. So I rang a taxi and I got a taxi. I probably got to [Hospital name] at about twenty-five past eight and he died at twenty-four minutes past. The fact that the Doctor at [other hospital’s name] didn’t say to me “Look your son is very ill, I think you better go with him”. That’s the one thing that I just can’t get over, can’t get past. I wasn’t there, and that was when he needed me most.’ Mother, 010 ‘I was given the option by my local obstetrician that if I wished to transfer back to the country hospital, to be closer to my older son and family that I’d be able to do so . . . I was told that I’d be transferred by ambulance . . . when it actually came to changing hospitals I was told we’d have to find out own way there . . . we drove . . . when I got to the hospital back in the country I was told that the maternity ward was actually closed . . . so they put me in another ward . . . there was no doctor there, no one there to administer any medication and at that stage I was still on reasonably high pain killers . . . it wasn’t until the following morning that I actually saw the first doctor . . . it was too late . . . the problem had already occurred . . . it was just very poorly organised . . . I feel a bit angry at both hospitals because I feel there was a huge lack of communication between the two.’ Patient, 030
Staff not adequately trained to use equipment No doctor present
Delays in diagnosis and treatment, including delay in transfer to a larger hospital
Distance to services becomes a problem when things go wrong
A sense of being cut off from their loved ones
Seriousness of the patient’s condition and the possibility of deterioration during transfer to a larger hospital was not adequately communicated
Navigating through a networked system
The challenge of transferring back to the rural hospital
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communicated to them. Third, this meant that some families were in transit when their ill relative died. For several interviewees, this was tantamount to suffering an adverse event. For patients that did survive the transfer and treatment at the larger hospital, navigating through a networked system of hospitals became problematic, and in some cases resulted in an adverse event. Overall, the quotes in Table 2 demonstrate that there was a perception of a general lack of communication with the patient and their family about how they will be cared for in a networked system; a perceived lack of cross-institutional communication and a general lack of continuity of care.
Rural open disclosure The lack of coordination and communication between hospitals identified in Table 2 above was not confined to patient diagnosis, treatment and transfer. It also permeated the incident disclosure process itself. Other themes relating to the implementation of open disclosure in rural areas included: patients’ and family members’ preferences for face-to-face disclosure rather than disclosure conducted via telephone; the preference for clinicians involved in the incident to attend; the need for a formal open disclosure meeting following an adverse event rather than informal one; and the impact of social familiarity on the open disclosure process. Quotes highlighting these themes are presented in Table 3. The quotes in Table 3 highlight the fact that if open disclosure did occur, it was generally initiated via letter from the health service and conducted over the telephone. Patients and relatives perceived this as an inadequate and inappropriate forum for conducting open disclosure for a number of reasons. Patients and their families wanted a face-to-face and sincere apology from the people involved in the incident. Patients and family members were often uncertain about who was attending the open disclosure telephone hook-up and why they were there. Staff involved in the incident were expected to be present at the open disclosure meeting if it was to be perceived as sincere. Another related problem is open disclosure having to be initiated by the patient or family themselves. As described by the interviewee in Table 3 above, she visited the hospital for an unrelated reason on a subsequent occasion and decided to seek out the doctor who had been in charge of her son’s care (the son died). On this occasion, the mother was given the opportunity by the doctor to ‘read through the report’. A final difficulty for patients and clinicians in small towns who become involved in a patient safety incident is that they might know each other socially, as the quotes in Table 3 demonstrate. Social familiarity was © 2014 National Rural Health Alliance Inc.
mentioned as resulting in both patients and clinicians hesitating to pursue incident disclosure to preserve the social relationship and avoid personal repercussions.
Discussion The above analysis reveals a range of issues that are unique to rural patients’ and families’ experiences of care going wrong. The main issues included a lack of resources at small rural hospitals; delays in diagnosis and transfer to a larger hospital; the problem of large travel distances to services when a patient rapidly deteriorates; isolation and inability to provide support experienced by family while the patient is treated away from home; a lack of cross-institutional communication; and a general lack of continuity of care. Other issues include the social repercussions of incidents affecting patients from small towns who were treated by staff they know personally, or whose services are managed by people they know, resulting in awkwardness and a lack of candour for fear of future repercussions. The large numbers of patients living in rural areas in Australia, their reliance on a network of health care services and the likelihood of some types of care originating in a small rural hospital going wrong are such as to necessitate additional considerations when there is an adverse event. Specifically, our analysis shows that, besides needing to address the continuity of care and communication between service providers in a networked system, services need to devise strategies for managing open disclosure in situations where multiple institutions are involved and where the incident trajectory might need to be reconstructed through careful collaboration across institutions. Most importantly, disclosure processes need to be devised that take account of personal relationships that can exist between patients and staff involved in incidents. For people living in rural communities, the need for interpersonal communication among those involved in incidents is de rigueur to militate against social breakdown. For example, instead of relying on written correspondence or the telephone, it might be possible for services and patients and families in areas included in the National Broadband Network to communicate using Internet video technologies such as Skype or Gmail. Seeing one another face to face is critical for all parties to appreciate the personal and emotional implications of what went wrong and gain or convey reassurance that the harm caused is taken seriously. While these findings are important, we acknowledge that the study has a number of limitations. First, the Australia-wide sample of interviewees for the ‘100 Patient Stories’ study contained only 13 rural patients’ and family members’ stories. This number is limited of course, and little can be generalised from our findings as
202 TABLE 3:
D. PIPER ET AL.
The how, who and why of rural open disclosure
Overarching theme Subtheme
Quote
The how, who and Lack of coordination ‘The local hospital was quite happy to sit on their hands and say it was [name why of rural and communication larger hospitals]’s fault and [name larger hospital] were quite happy to say it was open disclosure between hospitals local hospitals’ fault.’ Family, 016. The need for ‘It’s easy to write a letter and say ay ay ay, [but] unless you’re looking people in face-to-face the eye and saying you have stuffed up I don’t think a letter can do that because disclosure people don’t see the expression of hurt that is in your face.’ Patient, 049 ‘A face-to-face interview or meeting, I think, would have probably been more appropriate . . . if it was a face to face meeting or interview. To me it would have shown that they, not put in the effort, but they were taking the time to actually speak with me about the problem . . .’ Patient, 030 The need for the P3: ‘In the letter, it started off by saying that they apologised and they’re sorry that person perceived as our dealings with the hospital hadn’t been positive ones, but I think the wrong responsible for the person’s apologised, we didn’t want the Area Health to apologise, we wanted the incident to attend person responsible to apologise . . . It just made it so impersonal. . .’ Family, 016 The inadequacy of P4: ‘There was the general Manager from [local hospital] and a telephone hook-up open disclosure for someone at [tertiary referral hospital].’ conducted via P3: ‘And we’re not really sure what he was doing . . . This telephone hook-up was telephone a joke – this fellow . . . I think he might have been reading the report or having a cup of tea or something. I don’t know where he was but every time something was said the manager from the hospital said to this fella “Oh what do you think about it?” And he goes “What was that?” . . . and three quarters of the way through we lost the line.’ P2: ‘So we came away feeling we hadn’t gained much. . .’ P3: ‘. . . [name P1] would ask him a question and he’d go “Oh what was that question again?” ’ P2: ‘Like he couldn’t hear most of what was going on.’ P4: ‘There’s a problem with it. There’s obviously a problem with the telephone . . . very poor. Very poor . . .’ P3: ‘A twenty cent phone call sort of looked, made, [name deceased patient] very cheap.’ Family, 016 Inappropriately ‘When I saw the doctor at X hospital, it wasn’t an arranged meeting. I went up informal open there with a urinary tract infection and I got him. He went away and he’d got disclosure [name of patient] report, so we read through it.’ Mother, 010 The impact of social ‘They don’t want too much spruiking around, especially in a country town. It relationships makes it very difficult . . . because you’ve only got your local doctors at the hospital. So people aren’t going to say much about their local doctor. They are the ones they go to every day, they have to go to them. If the hospital starts pushing things back on the doctors [for whom the rural appointment might not be critical to their overall career trajectory], well they’re just going to say “Oh well. We’re not going to bother going to the hospital when you want us.” . . . [Also] things get around pretty quick and you soon know who’s had problems at the hospital . . .’ Wife, 099 ‘In a way we had a personal level with her [hospital manager]. [Name family member A] went to school with her, so did [Name family member B]. She [hospital manager] delivered our second baby. So I felt that probably we couldn’t delve too personally . . . there was too much of a person . . . not that we are friendly . . . we haven’t had contact for 26 years but you’ve always got that bit of a connection with people that you’ve known in your history . . . that’s a country thing . . . and I used to work at [name hospital] as well. She knew that and I really think that put a different level on the whole thing . . .’ Family, 016
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a result. Second, as is the case with the sample as a whole, the representativeness of cases in relation to the overall number of incidents across Australia remains uncertain. This is due to the total number of incidents per site and over a given period remaining unknown. Therefore, it is not possible to determine the ideal make-up of a suitable study sample in this domain. Finally, we do not know whether interviewees still had ‘an axe to grind’, whether they spoke about their harm because they had reconciled themselves with what happened and whether we missed people for whom the outcomes of the incident and the disclosure were still too painful to discuss in a research context.
Conclusion This study represents the first attempt to analyse rural patients’ and their families’ experiences of open disclosure. Clearly, there is a need for further research on the degree to which rural patients are affected by inadequate incident disclosure communication; the potential impact of telehealth on incident management and disclosure; the need to include rural patients in improving local services’ incident management; and the design of rural service-specific incident management and incident disclosure training. While the UTS Centre for Health Communication Australian Research Council grant on strengthening communication in health care incident disclosure makes some of this work possible, more funding needs to be targeted at rural communities to prevent incident disclosure from adding to the adverse effects of health care incidents for people living in rural Australia.
Acknowledgements We thank the Australian Commission on Safety and Quality in Health Care for their financial, logistical and moral support during the full 2 years of the project. We thank the Open Disclosure Advisory Group for their wisdom and encouragement during the project. We thank all the patients and family members who contrib-
© 2014 National Rural Health Alliance Inc.
uted to this study. We also thank all the people at the health services and ethics committees who saw merit in this work and allowed us access to patients who were harmed by a health care incident. We also thank those who contributed to the research as colleagues.
Author contributions Donella Piper 40%, Rick Iedema 40%, Kate Bower 20%.
References 1 Australian Council for Safety and Quality in Health Care. Open Disclosure Standard: A National Standard for Open Communication in Public and Private Hospitals Following an Adverse Event in Health Care. Canberra: Commonwealth of Australia, 2003. 2 Australian Council for Safety and Quality in Health Care. Open Disclosure Standard: A National Standard for Open Communication in Public and Private Hospitals Following an Adverse Event in Health Care. Canberra: Commonwealth of Australia, 2003. 3 Australian Commission on Safety and Quality in Health Care (2013). Australian Open Disclosure Framework. ACSQHC, Sydney. ACHC, Sydney. 4 Australian Commission on Safety and Quality in Health Care (2012), National Safety and Quality Standards. ACSQHC, Sydney. 5 Iedema R, Allen S, Britton K et al. Patients’ and family members’ views on how clinicians enact and how they should enact incident disclosure: the ‘100 patient stories’ qualitative study. British Medical Journal 2011; 343: d4423. doi: 10.1136/bmj.d4423 6 Iedema R, Allen S, Britton K et al. Patients’ and family members’ views on how clinicians enact and how they should enact incident disclosure: the ‘100 patient stories’ qualitative study. British Medical Journal 2011; 343: d4423. doi: 10.1136/bmj.d4423 7 Iedema R, Allen S, Britton K et al. Patients’ and family members’ views on how clinicians enact and how they should enact incident disclosure: the ‘100 patient stories’ qualitative study. British Medical Journal 2011; 343: d4423. doi: 10.1136/bmj.d4423 8 Martin JR (2003). Working with Discourse: Meaning beyond the clause. London: Continuum.
Aust. J. Rural Health (2014) 22, 197–203
Original Research Rural patients’ experiences of the open disclosure of adverse events Donella Piper, PhD,1 Rick Iedema, PhD,2 and Kate Bower, PhD3 1
School of Health, University of New England, Armidale, 2Faculty of Health and School of Health Sciences, University of Tasmania (Sydney campus), and 3Centre for Health Communication, Faculty of Arts and Social Sciences, University of Technology, Sydney, New South Wales, Australia
Abstract Objective: To analyse rural patients’ and their families’ experiences of open disclosure and offer recommendations to improve disclosure in rural areas. Design: Retrospective qualitative study based on a subset of 13 semistructured, in-depth interviews with rural patients from a larger dataset. The larger data set form a nationwide, multisite, retrospective-qualitative study that included 100 semistructured, in-depth interviews with 119 patients and family members who were involved in high-severity health care incidents and incident disclosure. The larger study is known as the ‘100 Patient Stories’ study. Interviews were transcribed verbatim and analysed by one analyst (D.P.) for recurrent experiences and concerns. Setting: Acute care. Participants: A sub-set of 13 of the 100 participants from the ’100 Patient Stories’ study who identified as experiencing an adverse incident in a rural or regional area. Main outcome measures: Patients’ and family members’ perceptions and experiences of health care incident disclosure, as expressed in interviews. Results: Rural patients and clinicians experience additional challenges to metropolitan patients and clinicians in their experiences of health care incidents. These additional barriers include: a lack of resources at small hosCorrespondence: Dr Donella Piper, School of Health, University of New England, Queen Elizabeth Drive, Armidale, New South Wales, 2351, Australia. Email: [email protected] Funding: Funding for this study was awarded by the Australian Commission on Safety and Quality in Health Care. Study design: The study was designed by the Australian Commission on Safety and Quality in Health Care. Independence of researchers: All authors, external and internal, had full access to all of the data (including statistical reports and tables) in the study and can take responsibility for the integrity of the data and the accuracy of the data analysis. Accepted for publication 16 June 2014. © 2014 National Rural Health Alliance Inc.
pitals; delays in diagnosis and transfer; distance between services; and a lack of communication between providers. These challenges impact not only upon how patients and their families experience incidents, but also how open disclosure is implemented. Conclusions: This analysis of 13 of the 100 Patient Stories interviews provides guidance to rural health services on how to conduct open disclosure. KEY WORDS: communication, consumer issue and perspective, patient safety/medical error, rural health policy, safety and quality.
Introduction The Australian Open Disclosure Standard was published in 2003, following endorsement by the Australian Health Minsters’ Conference.1 The intention of the standard is to facilitate more consistent and effective communication after adverse events. It describes the elements of open disclosure as: an expression of regret; a factual explanation of what happened; consequences of the event; and the steps being taken to manage the event and prevent recurrence.2 The Australian Commission on Safety and Quality in Health Care (ACSQHC) launched the new Open Disclosure Framework in May 2013.3 This framework will be an integral component of the ACSQHC’s 2012 National Quality and Safety accreditation standard.4 To date, the 100 patients stories study5 is the only study to measure the actual experiences with the disclosure process on the part of a large cohort of patients and families. The study had two objectives: to understand patients’ and relatives’ experiences of health care incidents and incident disclosure since 2008, and to enrich open disclosure policy with patients’ views of the principles of effective open disclosure.6 Of the 100 Patient Stories interviews with patients and family members, 13 were with patients and/or families from rural areas. Rural patients’ and relatives’ doi: 10.1111/ajr.12124
198
What is already known about this subject: • Overall, patients and family members expect open and early admission that a serious incident has occurred; an apology, an explanation of its causes, an explanation of its consequences for them and their care, and a plan that addresses how similar incidents will be avoided. • No study to date has specifically analysed rural patients’ and their families’ experiences of open disclosure.
experience of open disclosure was the same as those reported by their city cousins: patients and family members felt that the health service incident disclosure did not meet their needs and expectations. They expected better reparation for incident disclosure, more shared dialogue about what went wrong, more follow-up support, input into when the time was right for disclosure and more information about subsequent improvement processes.7 In addition, however, the 13 rural patient stories that formed part of the 100 Patient Stories Project brought to life the extra challenges in delivering health care to rural and remote communities and also the practice of incident disclosure in a rural setting. This article reports on our analysis of these rural and regional interviews.
Method Design The data for this article are subset of the larger ‘100 Patient Stories’ study. In-depth, semistructured audio(and video-) recorded interviews with patients and their families who had experienced a severe to very severe health care incident (involving serious short-term or permanent harm or death) were conducted. Participants had also experienced open disclosure of the harm, sometime between 2008 and 2010. Interview participants were recruited via health services and via an advertisement in the national print media and Internet research companies. In total, 119 interviewees were invited to participate in 100 interviews. Participants were asked to indicate whether the incident occurred in a metropolitan or rural setting. Thirteen of these 100 interviews indicated that the incident described in the interviews occurred in a rural setting.
Participants For this subset of 13 interviews, the health care incidents discussed involved patients ranging from 18 to 91 years
D. PIPER ET AL.
What this study adds: • Incident disclosure does not meet the expectations of rural patients involved in serious incidents. • Rural patients and their families experience additional burdens to their city cousins following an adverse event. • These additional burdens are an important source of information about not only how incident disclosure needs to be conducted and improved in rural areas, but the communication challenges faced by providers and patients in a networked health system.
old with an average age of 57. The majority of patients were men and were admitted via ambulance to their local hospital Emergency Department. The most common incident type was delayed treatment. The most common outcomes were ongoing suffering (five patients) and death (four patients) (Table 1).
Data collection and analysis All 100 patient interviews were conducted, recorded and analysed between 2009 and 2011. Interviews were transcribed verbatim. Transcripts were discourse analysed involving identification of overarching theme domains, cross-thematic relationships and thematic hierarchies (e.g. subthemes ‘anger’ and ‘disappointment’ were co-arranged under the theme ‘emotions’).8 In 2013, one researcher (D.P.) analysed the subset of 13 rural transcripts in order to identify any themes that were particular to rural patients.
Results Rural patients and their families spoke about two overarching issues: the diagnosis, transfer and treatment issues that led to the incident after presentation to the rural hospital, and the open disclosure process they subsequently experienced.
Diagnosis, transfer and treatment Prominent in the interviews was a perceived lack of resources at the local hospital to which the patient initially presented. The lack of training, doctor or equipment at the small rural hospital often meant that patients and their families experienced a delay in diagnosis and treatment. It was not uncommon for a patient to present to the local hospital and have to wait for a © 2014 National Rural Health Alliance Inc.
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TABLE 1:
Overview of rural and regional participants’ age, gender, reason for admission, incident type, severity and outcome
Participant
Patient age group
Patient gender
010 Mother
46–65
Male
016 Family
66–75
Female
030 Patient
26–45
Female
047 Son-in-law
75+
Male
049 Patient
46–65
Male
071 Daughter
75+
Female
081 Patient
46–65
Male
089 Patient
18–25
Male
091 Wife
Unassigned
Male
093 Mother
18–25
Male
098 Patient
46–65
Female
099 Wife
66–75
Male
Reason for admission
Incident type
SAC rating
Outcome or harm
Treatment for existing condition Emergency – admitted via ambulance Caesarean
Delayed treatment
1
Death
Administrative error
1
Death
Delayed treatment; reckless care Fall; medication error
2
Suffering
1
Injury
Medication error
3
Suffering
Wrongful discharge
2
Suffering
Diagnostic error
2
Suffering
Error or complication of medical or surgical procedure Delayed treatment; incorrect treatment Wrongful discharge
1
Injury
2
Disability
1
Suffering
1
Unassigned
1
Death
Emergency – admitted via ambulance Emergency – admitted via ambulance Emergency – admitted via ambulance Emergency – admitted via ambulance Emergency – admitted via ambulance Emergency – admitted via ambulance Emergency – admitted via ambulance Emergency – admitted via ambulance Emergency – admitted via ambulance
Delayed treatment; diagnostic error; wrongful discharge Delayed treatment
SAC 1 includes all clinical incidents where serious harm or death is/could be specifically caused by health care rather than the patient’s underlying condition or illness. SAC 2 includes all clinical incidents where moderate harm is/could be specifically caused by health care rather than the patient’s underlying condition or illness. SAC 3 includes all clinical incidents where minimal or no harm is/could be specifically caused by health care rather than the patient’s underlying condition or illness. SAC, Severity Assessment Code Rating.
doctor to be ‘called in’ simply to authorise transfer to a larger hospital within the health network several hours later. This coupled with travel time to the larger hospital and the wait time at the larger hospital meant that patients and their families perceived there to be problematic delays in diagnosis and treatment and a lack of streamlined access to appropriate medical personnel and equipment. Another prominent theme was distance to services. Examples of quotes demonstrating participants’ concerns about these issues are presented in Table 2. Quotes on a lack of resources centred around three subthemes: first, a lack of or faulty equipment was often seen as a precursor to the incident by some participants; second, other participants experienced a lack of resources in the form of equipment being present but staff not being adequately trained in how to use it; and © 2014 National Rural Health Alliance Inc.
third, participants spoke of lack of resources in the form of being taken by ambulance to a hospital where the absence of a qualified doctor was seen as the precursor to their incident. One interviewee’s statement under the ‘delay in transfer to a larger hospital’ subtheme exemplifies that patients and their families wanted a more streamlined approach between ambulance and the Local Health Network to admission. Having to travel long distances to health services was seen to underpin things going wrong in three main ways. First, if patients were treated at a larger more specialised hospital, the family often felt a sense of being unable to support their loved ones. Second, families of patients who died felt that the seriousness of the patient’s condition and the possibility of deterioration during transfer to a larger hospital were not adequately
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Diagnosis, transfer and treatment themes
Overarching theme
Subtheme
Quote
Lack of resources
Lack of or faulty equipment
‘He said “The scanner is actually broken, the CT scanner . . . he passed away . . . ” I said “Well what actually happened?” And she said “Well we don’t know . . . we think it was a heart attack. . .we were delayed in getting the scan done, well the scanner was broken.”’ Brother, 087 ‘At the local hospital they have a [dialysis] machine, nobody knows how to work it! . . . There were eight people standing around him trying to help him, and the male nurse saying “What do I do now”. . . nobody knew.’ Mother, 010 ‘They [ambulance] took him straight up to the local hospital . . . on this particular day there was no doctor to even call to the hospital . . . why did they take him to X hospital when there was no doctor there?’ Wife, 099 ‘Now my argument is why . . . they would have had his health records, and it was only three weeks before that he’d been at [Hospital A name] in Sydney. He’d had stents put in, he’d had a heart attack. Why didn’t they take him . . . straight to [Hospital B name] where there is a stroke unit, which they finally did that night . . . These small country hospitals . . . I just think they should have a better system where if somebody is having a heart attack, or a stroke or something, they should be then straight away sent to the big regional hospital.’ Wife, 099 ‘And this whole time there was no support for me. And I found that, as an outsider, really, really shocking. I don’t live there. . . There was absolutely no moral support . . . the best he could do was give me a few free parking tickets . . . if I wanted to be accommodated on the hospital premises . . . and he didn’t know how I would feel, at that moment there were 5 men in there and I would have to share a toilet with them . . . Why even suggest that? . . . It was not a good experience.’ Wife, 091 ‘The doctor gave me the impression that if we got him up there and he has his dialysis he’d be alright. So I came home to get his clothes ready and take up the next day. I was only home about an hour I suppose and the social worker rang me. She said to me: “Have you got anybody there?” and I said “No I haven’t, why? What do you mean?” She said . . . “Well they’re working on Dave now”. And oh God, as soon as she said “working on Dave” I thought “go”. So I got off the phone, I didn’t know how to get to [Hospital name] . . . there was no one here, no one I could ask. So I rang a taxi and I got a taxi. I probably got to [Hospital name] at about twenty-five past eight and he died at twenty-four minutes past. The fact that the Doctor at [other hospital’s name] didn’t say to me “Look your son is very ill, I think you better go with him”. That’s the one thing that I just can’t get over, can’t get past. I wasn’t there, and that was when he needed me most.’ Mother, 010 ‘I was given the option by my local obstetrician that if I wished to transfer back to the country hospital, to be closer to my older son and family that I’d be able to do so . . . I was told that I’d be transferred by ambulance . . . when it actually came to changing hospitals I was told we’d have to find out own way there . . . we drove . . . when I got to the hospital back in the country I was told that the maternity ward was actually closed . . . so they put me in another ward . . . there was no doctor there, no one there to administer any medication and at that stage I was still on reasonably high pain killers . . . it wasn’t until the following morning that I actually saw the first doctor . . . it was too late . . . the problem had already occurred . . . it was just very poorly organised . . . I feel a bit angry at both hospitals because I feel there was a huge lack of communication between the two.’ Patient, 030
Staff not adequately trained to use equipment No doctor present
Delays in diagnosis and treatment, including delay in transfer to a larger hospital
Distance to services becomes a problem when things go wrong
A sense of being cut off from their loved ones
Seriousness of the patient’s condition and the possibility of deterioration during transfer to a larger hospital was not adequately communicated
Navigating through a networked system
The challenge of transferring back to the rural hospital
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communicated to them. Third, this meant that some families were in transit when their ill relative died. For several interviewees, this was tantamount to suffering an adverse event. For patients that did survive the transfer and treatment at the larger hospital, navigating through a networked system of hospitals became problematic, and in some cases resulted in an adverse event. Overall, the quotes in Table 2 demonstrate that there was a perception of a general lack of communication with the patient and their family about how they will be cared for in a networked system; a perceived lack of cross-institutional communication and a general lack of continuity of care.
Rural open disclosure The lack of coordination and communication between hospitals identified in Table 2 above was not confined to patient diagnosis, treatment and transfer. It also permeated the incident disclosure process itself. Other themes relating to the implementation of open disclosure in rural areas included: patients’ and family members’ preferences for face-to-face disclosure rather than disclosure conducted via telephone; the preference for clinicians involved in the incident to attend; the need for a formal open disclosure meeting following an adverse event rather than informal one; and the impact of social familiarity on the open disclosure process. Quotes highlighting these themes are presented in Table 3. The quotes in Table 3 highlight the fact that if open disclosure did occur, it was generally initiated via letter from the health service and conducted over the telephone. Patients and relatives perceived this as an inadequate and inappropriate forum for conducting open disclosure for a number of reasons. Patients and their families wanted a face-to-face and sincere apology from the people involved in the incident. Patients and family members were often uncertain about who was attending the open disclosure telephone hook-up and why they were there. Staff involved in the incident were expected to be present at the open disclosure meeting if it was to be perceived as sincere. Another related problem is open disclosure having to be initiated by the patient or family themselves. As described by the interviewee in Table 3 above, she visited the hospital for an unrelated reason on a subsequent occasion and decided to seek out the doctor who had been in charge of her son’s care (the son died). On this occasion, the mother was given the opportunity by the doctor to ‘read through the report’. A final difficulty for patients and clinicians in small towns who become involved in a patient safety incident is that they might know each other socially, as the quotes in Table 3 demonstrate. Social familiarity was © 2014 National Rural Health Alliance Inc.
mentioned as resulting in both patients and clinicians hesitating to pursue incident disclosure to preserve the social relationship and avoid personal repercussions.
Discussion The above analysis reveals a range of issues that are unique to rural patients’ and families’ experiences of care going wrong. The main issues included a lack of resources at small rural hospitals; delays in diagnosis and transfer to a larger hospital; the problem of large travel distances to services when a patient rapidly deteriorates; isolation and inability to provide support experienced by family while the patient is treated away from home; a lack of cross-institutional communication; and a general lack of continuity of care. Other issues include the social repercussions of incidents affecting patients from small towns who were treated by staff they know personally, or whose services are managed by people they know, resulting in awkwardness and a lack of candour for fear of future repercussions. The large numbers of patients living in rural areas in Australia, their reliance on a network of health care services and the likelihood of some types of care originating in a small rural hospital going wrong are such as to necessitate additional considerations when there is an adverse event. Specifically, our analysis shows that, besides needing to address the continuity of care and communication between service providers in a networked system, services need to devise strategies for managing open disclosure in situations where multiple institutions are involved and where the incident trajectory might need to be reconstructed through careful collaboration across institutions. Most importantly, disclosure processes need to be devised that take account of personal relationships that can exist between patients and staff involved in incidents. For people living in rural communities, the need for interpersonal communication among those involved in incidents is de rigueur to militate against social breakdown. For example, instead of relying on written correspondence or the telephone, it might be possible for services and patients and families in areas included in the National Broadband Network to communicate using Internet video technologies such as Skype or Gmail. Seeing one another face to face is critical for all parties to appreciate the personal and emotional implications of what went wrong and gain or convey reassurance that the harm caused is taken seriously. While these findings are important, we acknowledge that the study has a number of limitations. First, the Australia-wide sample of interviewees for the ‘100 Patient Stories’ study contained only 13 rural patients’ and family members’ stories. This number is limited of course, and little can be generalised from our findings as
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The how, who and why of rural open disclosure
Overarching theme Subtheme
Quote
The how, who and Lack of coordination ‘The local hospital was quite happy to sit on their hands and say it was [name why of rural and communication larger hospitals]’s fault and [name larger hospital] were quite happy to say it was open disclosure between hospitals local hospitals’ fault.’ Family, 016. The need for ‘It’s easy to write a letter and say ay ay ay, [but] unless you’re looking people in face-to-face the eye and saying you have stuffed up I don’t think a letter can do that because disclosure people don’t see the expression of hurt that is in your face.’ Patient, 049 ‘A face-to-face interview or meeting, I think, would have probably been more appropriate . . . if it was a face to face meeting or interview. To me it would have shown that they, not put in the effort, but they were taking the time to actually speak with me about the problem . . .’ Patient, 030 The need for the P3: ‘In the letter, it started off by saying that they apologised and they’re sorry that person perceived as our dealings with the hospital hadn’t been positive ones, but I think the wrong responsible for the person’s apologised, we didn’t want the Area Health to apologise, we wanted the incident to attend person responsible to apologise . . . It just made it so impersonal. . .’ Family, 016 The inadequacy of P4: ‘There was the general Manager from [local hospital] and a telephone hook-up open disclosure for someone at [tertiary referral hospital].’ conducted via P3: ‘And we’re not really sure what he was doing . . . This telephone hook-up was telephone a joke – this fellow . . . I think he might have been reading the report or having a cup of tea or something. I don’t know where he was but every time something was said the manager from the hospital said to this fella “Oh what do you think about it?” And he goes “What was that?” . . . and three quarters of the way through we lost the line.’ P2: ‘So we came away feeling we hadn’t gained much. . .’ P3: ‘. . . [name P1] would ask him a question and he’d go “Oh what was that question again?” ’ P2: ‘Like he couldn’t hear most of what was going on.’ P4: ‘There’s a problem with it. There’s obviously a problem with the telephone . . . very poor. Very poor . . .’ P3: ‘A twenty cent phone call sort of looked, made, [name deceased patient] very cheap.’ Family, 016 Inappropriately ‘When I saw the doctor at X hospital, it wasn’t an arranged meeting. I went up informal open there with a urinary tract infection and I got him. He went away and he’d got disclosure [name of patient] report, so we read through it.’ Mother, 010 The impact of social ‘They don’t want too much spruiking around, especially in a country town. It relationships makes it very difficult . . . because you’ve only got your local doctors at the hospital. So people aren’t going to say much about their local doctor. They are the ones they go to every day, they have to go to them. If the hospital starts pushing things back on the doctors [for whom the rural appointment might not be critical to their overall career trajectory], well they’re just going to say “Oh well. We’re not going to bother going to the hospital when you want us.” . . . [Also] things get around pretty quick and you soon know who’s had problems at the hospital . . .’ Wife, 099 ‘In a way we had a personal level with her [hospital manager]. [Name family member A] went to school with her, so did [Name family member B]. She [hospital manager] delivered our second baby. So I felt that probably we couldn’t delve too personally . . . there was too much of a person . . . not that we are friendly . . . we haven’t had contact for 26 years but you’ve always got that bit of a connection with people that you’ve known in your history . . . that’s a country thing . . . and I used to work at [name hospital] as well. She knew that and I really think that put a different level on the whole thing . . .’ Family, 016
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a result. Second, as is the case with the sample as a whole, the representativeness of cases in relation to the overall number of incidents across Australia remains uncertain. This is due to the total number of incidents per site and over a given period remaining unknown. Therefore, it is not possible to determine the ideal make-up of a suitable study sample in this domain. Finally, we do not know whether interviewees still had ‘an axe to grind’, whether they spoke about their harm because they had reconciled themselves with what happened and whether we missed people for whom the outcomes of the incident and the disclosure were still too painful to discuss in a research context.
Conclusion This study represents the first attempt to analyse rural patients’ and their families’ experiences of open disclosure. Clearly, there is a need for further research on the degree to which rural patients are affected by inadequate incident disclosure communication; the potential impact of telehealth on incident management and disclosure; the need to include rural patients in improving local services’ incident management; and the design of rural service-specific incident management and incident disclosure training. While the UTS Centre for Health Communication Australian Research Council grant on strengthening communication in health care incident disclosure makes some of this work possible, more funding needs to be targeted at rural communities to prevent incident disclosure from adding to the adverse effects of health care incidents for people living in rural Australia.
Acknowledgements We thank the Australian Commission on Safety and Quality in Health Care for their financial, logistical and moral support during the full 2 years of the project. We thank the Open Disclosure Advisory Group for their wisdom and encouragement during the project. We thank all the patients and family members who contrib-
© 2014 National Rural Health Alliance Inc.
uted to this study. We also thank all the people at the health services and ethics committees who saw merit in this work and allowed us access to patients who were harmed by a health care incident. We also thank those who contributed to the research as colleagues.
Author contributions Donella Piper 40%, Rick Iedema 40%, Kate Bower 20%.
References 1 Australian Council for Safety and Quality in Health Care. Open Disclosure Standard: A National Standard for Open Communication in Public and Private Hospitals Following an Adverse Event in Health Care. Canberra: Commonwealth of Australia, 2003. 2 Australian Council for Safety and Quality in Health Care. Open Disclosure Standard: A National Standard for Open Communication in Public and Private Hospitals Following an Adverse Event in Health Care. Canberra: Commonwealth of Australia, 2003. 3 Australian Commission on Safety and Quality in Health Care (2013). Australian Open Disclosure Framework. ACSQHC, Sydney. ACHC, Sydney. 4 Australian Commission on Safety and Quality in Health Care (2012), National Safety and Quality Standards. ACSQHC, Sydney. 5 Iedema R, Allen S, Britton K et al. Patients’ and family members’ views on how clinicians enact and how they should enact incident disclosure: the ‘100 patient stories’ qualitative study. British Medical Journal 2011; 343: d4423. doi: 10.1136/bmj.d4423 6 Iedema R, Allen S, Britton K et al. Patients’ and family members’ views on how clinicians enact and how they should enact incident disclosure: the ‘100 patient stories’ qualitative study. British Medical Journal 2011; 343: d4423. doi: 10.1136/bmj.d4423 7 Iedema R, Allen S, Britton K et al. Patients’ and family members’ views on how clinicians enact and how they should enact incident disclosure: the ‘100 patient stories’ qualitative study. British Medical Journal 2011; 343: d4423. doi: 10.1136/bmj.d4423 8 Martin JR (2003). Working with Discourse: Meaning beyond the clause. London: Continuum.
