Listening to patients and relatives:
Evidence from
the ‘100 patient stories study’

IIR Deteriorating Patients Conference
...
Structure of this presentation

•
•
•
•
•

Context - the Australian Open Disclosure Studies;
Overview - The 100 patient st...
Context
Open Disclosure studies in Australia
•
•
•
•
•
•

2003 Standard
2005-7 Pilot
2008-9 Evaluation
2008 – 9 Legal aspe...
Overview
The ‘100 Patient Stories Project’

•Funded by
–ACSQHC

•Conducted by
–CHC UTS
–2009-11
Iedema., Allen, S., Britto...
Overview
The ‘100 Patient Stories Project
•Recruitment – two phases
•In-depth, semi-structured interviews
–All audio recor...
Fig 1 Age ranges of the patients discussed in interviews about high severity healthcare
incidents.

Iedema R et al. BMJ 20...
Fig 2 Number of interview participants (patients and family members involved in high
severity healthcare incidents) by Aus...
Fig 3 Numbers of high severity healthcare incidents discussed by clinical subject.

Iedema R et al. BMJ 2011;343:bmj.d4423...
Overall results
•Disclosure rarely met most patients and family
members‟ needs and expectations;
•42% received apology;
−o...
Principles for effective incident
disclosure
• If clinicians and services are to meet patients‟ and
relatives‟ expectation...
Principles for effective incident
disclosure (continued)
• The disclosure discussion is performed as a two way, explorator...
The 100 patient stories project:
Conclusions
Despite growing prominence of open disclosure,
discussion about healthcare in...
Deteriorating patients
Four main themes around patients and family
members perceptions about the deteriorating
patient eme...
Who first notices the deterioration?
The patient or carer often notices the deteriorating patient
prior to staff:
3 sub-th...
Not sure whether or not to speak up
“I kept saying something‟s not right. But as
we were leaving we were downstairs and
we...
Do speak up but not listened to
“I kept saying, you know, there‟s something
wrong, there‟s something wrong, and they
just ...
Do speak up but not listened to
“And I suppose we were quite
proactive. We kept saying to
the doctor this is highly unusua...
Do speak up but not listened to
•“When he came back to the ward we expressed concern about this,
but nobody would seem to ...
Do speak up but not listened to
• “I actually queried it on the second day…and had no response
…after the second day I com...
Do speak up and are listened to
•“For the first two or three days he was there, we could see him getting
sleepier and slee...
Summary

• Patients and their family members often notice the
deterioration prior to health service providers;
• Most in o...
Deterioration makes communication
even more difficult
• “...The language barrier between the doctors and myself wasn‟t ver...
• “Anyway, I sat down and my former boss came through
and he said „do you want me to have a look‟ and I said
„yes‟ so he w...
How and when is the deterioration
communicated to patients and
families?
• Patients and family members expressed the need ...
Not early enough
• “I can‟t help feeling that if I had only just known right there and
then..still at that stage we though...
Not clearly enough
• “We were so confused – well, like, is he dying or isn‟t he? And I‟d be
on the phone to my brother in ...
Not at all
• “What irks me was – they knew she was dying, they all knew she
was dying, because they brought palliative car...
• “So I took the hotel across the road and I said to them if there is any
little – something – just call me. But they didn...
Blunt is better than not at all!
• P2: Doctor (name) was really blunt. ...P1: At that point (Doctor
name) said “Well look ...
Conclusion
• Patients need to feel empowered to speak up when they
feel something is not right AND they need to be listed ...
Discussion
Patient engagement in RRT
interventions – The literature
•

•

•

•

•

Gerdik C, Valilsh R, Miles K, Godwin s,...
Straw Poll

• Does you organisation facilitate family
initiated RRTs/METs? If so how?
• How do service providers and clini...
Listening to Patients and Relatives: Evidence from the ‘100 patient stories study’
Listening to Patients and Relatives: Evidence from the ‘100 patient stories study’
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Listening to Patients and Relatives: Evidence from the ‘100 patient stories study’

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Dr Donella Piper, Lecturer in Health Management, University of New England delivered this presentation at the 2013 Managing the Deteriorating Patient conference. The management of patients in clinical deterioration has become a chief concern for Australian hospitals, with a patient’s potential for deterioration existing in every hospital ward and health service across the country. This annual event focusses on improving education for staff caring for these patients, and improving the policies and protocols in place to maintain patient safety. For more information, please visit the event website: www.healthcareconferences.com.au/deterioratingpatients

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Listening to Patients and Relatives: Evidence from the ‘100 patient stories study’

  1. 1. Listening to patients and relatives: Evidence from the ‘100 patient stories study’ IIR Deteriorating Patients Conference 17-18 September 2013 , Hilton on the Park Melbourne Dr Donella Piper - dpiper@une.edu.au Prof Rick Iedema - Rick.Iedema@uts.edu.au
  2. 2. Structure of this presentation • • • • • Context - the Australian Open Disclosure Studies; Overview - The 100 patient stories project; The deteriorating patient: Patients‟ and family members‟ perceptions about deterioration : Conclusion; and Discussion.
  3. 3. Context Open Disclosure studies in Australia • • • • • • 2003 Standard 2005-7 Pilot 2008-9 Evaluation 2008 – 9 Legal aspects of Open Disclosure 2009-11 „100 patient stories project‟ 2011-12 ACSQHC drafted „Open Disclosure Framework‟ • 2014 integration into National Q&S Standards
  4. 4. Overview The ‘100 Patient Stories Project’ •Funded by –ACSQHC •Conducted by –CHC UTS –2009-11 Iedema., Allen, S., Britton, K., Piper, D., Baker, A., Grbich C., Allan, A., Jones, L., Tuckett, A., Williams A., Manias, E. Gallagher T. (2011) The „100 patient stories‟ project: Patient and family member views on how clinicians enact and how they should enact incident disclosure – a qualitative study, British Medical Journal July 25;343:d4423doi:10.1136/bmj.d4423.
  5. 5. Overview The ‘100 Patient Stories Project •Recruitment – two phases •In-depth, semi-structured interviews –All audio recorded (and some also video recorded); –50% face-to-face in interviewees‟ home; –remainder via phone. •Data analysis –Nvivo for managing data; –thematic analysis by 3 independent analysts; –cross-checking of main themes by two further independent analysts.
  6. 6. Fig 1 Age ranges of the patients discussed in interviews about high severity healthcare incidents. Iedema R et al. BMJ 2011;343:bmj.d4423 ©2011 by British Medical Journal Publishing Group
  7. 7. Fig 2 Number of interview participants (patients and family members involved in high severity healthcare incidents) by Australian state. Iedema R et al. BMJ 2011;343:bmj.d4423 ©2011 by British Medical Journal Publishing Group
  8. 8. Fig 3 Numbers of high severity healthcare incidents discussed by clinical subject. Iedema R et al. BMJ 2011;343:bmj.d4423 ©2011 by British Medical Journal Publishing Group
  9. 9. Overall results •Disclosure rarely met most patients and family members‟ needs and expectations; •42% received apology; −of these 42%, 48% found the apology satisfactory; •They expected: −better preparation for incident disclosure; −more shared dialogue about what went wrong; −more follow-up support and input into when the time was ripe for closure; and −more information about subsequent improvement in process.
  10. 10. Principles for effective incident disclosure • If clinicians and services are to meet patients‟ and relatives‟ expectations, they prepare all concerned for the incident disclosure meeting(s); • They investigate and agree on what went wrong and inform those harmed of the need for a discussion about the unexpected outcome; • Clinicians point out that the disclosure discussion(s) will benefit from a patient support person being present, and from those harmed presenting their own account, views, and questions about what went wrong and what needs to happen;
  11. 11. Principles for effective incident disclosure (continued) • The disclosure discussion is performed as a two way, exploratory dialogue that produces an explanation that satisfies all stakeholders, bolstered by a sincere apology, a care plan redressing the patient‟s harm, a strategy for preventing the incident from recurring, and a clear outline of whether, why, and how other agencies (such as a neighbouring health service or hospital, the police, or the coroner) are involved • Closure becomes feasible when the patient and family members feel they have asked everything they wanted to ask, have received adequate answers to their questions, and are satisfied that their concerns have been taken seriously • To reassure them that incident disclosure links to practice improvement, they are informed about how the service has addressed the incident and what difference this has made or is making to care outcomes.
  12. 12. The 100 patient stories project: Conclusions Despite growing prominence of open disclosure, discussion about healthcare incidents still falls short of patient and family member expectations. Healthcare organisations and providers should strengthen their efforts to meet patients‟ (and family members‟) needs and expectations.
  13. 13. Deteriorating patients Four main themes around patients and family members perceptions about the deteriorating patient emerged: – – – – Patient/family members are often the first to spot something is wrong. How the deterioration is experienced by the patient and family members; How and when the deterioration is communicated to patients and families; How the death of the patient is managed. Today I will focus on point 1 and point 3.
  14. 14. Who first notices the deterioration? The patient or carer often notices the deteriorating patient prior to staff: 3 sub-themes: –Not sure whether or not to speak up; –Do speak up but not listened to; and –Do speak up and are listened to.
  15. 15. Not sure whether or not to speak up “I kept saying something‟s not right. But as we were leaving we were downstairs and we went outside and he didn‟t seem to respond to the sunlight…and I was thinking should I go, should I go back upstairs and I thought no…the time went on and the feeling was getting bigger and bigger…he just didn‟t seem right… But then, I thought I was just being a paranoid mum.”
  16. 16. Do speak up but not listened to “I kept saying, you know, there‟s something wrong, there‟s something wrong, and they just kept feeding me up on painkillers and I kept saying don‟t keep giving me these because you‟re just masking the fact that something‟s wrong. And they just kept feeding them to me and something was wrong. I haemhorraged twice, I had a heart attack, I was rushed in for an emergency curette because they‟d left so much placenta in there…I just knew there was something wrong and I kept saying there‟s something wrong and I just wasn‟t listened to…”
  17. 17. Do speak up but not listened to “And I suppose we were quite proactive. We kept saying to the doctor this is highly unusual for her to have low blood pressure. She suffer from high blood pressure…We‟re not medical people… we don‟t know the questions to ask… 015(4)
  18. 18. Do speak up but not listened to •“When he came back to the ward we expressed concern about this, but nobody would seem to take hold of this information. They said „Oh well, yes we‟ll do something‟. And at that time we thought he isn‟t being treated as we feel he should.” 058 •“He said to the staff on the orthopedic ward „this knees infected‟ and I had a look at it, it was red, it was swollen, it was shiny, and I said “look, that‟s infected‟ and they said „no it‟s not…in the morning we were back because the stitches had burst open.” 062 •“ I guess I was …a little bit angry because I knew that there was something wrong and I felt the attitude was that there was nothing wrong. I continued to insist that there was something not right…I felt that he [clinician] wasn‟t really listening to what I had to say.” 066
  19. 19. Do speak up but not listened to • “I actually queried it on the second day…and had no response …after the second day I complained again to the doctors – again to the specialist who had done the operation – and the doctors at the hospital themselves – the registrars. And everyone of them said the same thing: it was just post op trauma…the bottom half of my leg had actually started turning black…and on the third day I just pulled the sheets back and said to them „look, you won‟t look at anything! Just have a look at this. This is not post op trauma, there is something wrong here! And when they checked it they found out that I had an infection.” 083
  20. 20. Do speak up and are listened to •“For the first two or three days he was there, we could see him getting sleepier and sleepier, and temperatures spiking more often, and more severe…and we were saying to [clinician name] “We can‟t understand why he‟s getting sleepier and sleepier, and why his temperature is going up more and more. He said „well look, I‟ll go and have a look, we‟ll go see what we can find out.‟ That‟s when they found out that he had five or six abscesses that had developed.” 031 •“Well he started to gasp for breath, and not one person came to his attention. I had to call the doctor. I said „Your patient‟s dying, you‟d better come over.‟ He came over and he put him into respiration.” 088
  21. 21. Summary • Patients and their family members often notice the deterioration prior to health service providers; • Most in our (small) sample felt they were not listened to; • A very small minority felt they were listened to; and • Some felt that they didn‟t know whether or not to speak up.
  22. 22. Deterioration makes communication even more difficult • “...The language barrier between the doctors and myself wasn‟t very good because I was in shock...I didn‟t really comprehend what was going on…Um it was…. What happened? 014 • So anyway, can you imagine? That was a real fright. That Friday...was a real fright to them because they thought „hang on, you said she was stable; one‟s saying 50/50; one‟s saying she‟s got a dead bowel‟ so they were getting all of this information thrown at them... that‟s the first time they got that information of 50/50 and of course that‟s the information you retain, isn‟t it? The scary stuff. Once you hear it‟s 50/50; the shock factor comes into play.” 032
  23. 23. • “Anyway, I sat down and my former boss came through and he said „do you want me to have a look‟ and I said „yes‟ so he walked down and he came back and he said „there‟s a lot of people and they‟re working on [patient‟s name]‟. ...You know, I didn‟t know, and I thought „okay‟....You know, sort of like, well, I don‟t know, numb. Whether that‟s a good way to explain it. Stupid. Anyway, he left and he did say to me, he said „ICU is not a good place to be‟. He was trying to warn me without telling me.” 053
  24. 24. How and when is the deterioration communicated to patients and families? • Patients and family members expressed the need to be informed earlier and more regularly of the patients condition – AND that there could be the possibility of deterioration. • Our sample reveled three approaches to communicating deterioration: – Not early enough; – Not clearly enough; – Not at all.
  25. 25. Not early enough • “I can‟t help feeling that if I had only just known right there and then..still at that stage we thought that she was just going in for an operation” 001 • “... They should have called me the moment that they knew they could not do anything for him, they should have called me. Instead they let that man lie there in a bed...‟.” 088 • “They obviously knew she was dying longer before that, so I think they should have had the decency to call us before that, not leave it until that time of the morning, because you just don‟t work that out, you know.” P2 004
  26. 26. Not clearly enough • “We were so confused – well, like, is he dying or isn‟t he? And I‟d be on the phone to my brother in hospital…And (brother) would go „well I don‟t know, I can‟t get any clear messages from them‟…So, you know, we needed someone to actually get down and say, your dad isn‟t eating and even though he‟s sort of quite lucid some of the time, he‟s actually dying, you need to prepare yourself, you know what I mean? And then I think we would have got on with it, instead of, oh well maybe he‟s dying today, or maybe he‟s getting better. It was very, very confusing for us…if they had actually spelled it out to us, he will not recover…” 007 • “Well I guess we just don‟t feel as if we were ever really given the correct information. If we were told “Look, it didn‟t go to plan, this is what happened, an artery was burst, the likelihood of your mother surviving is low, this is what‟s going to happen over the next fortnight, her kidneys will start to fail, and she will die slowly.‟ Horrible thing to say, but that was the reality.” 084
  27. 27. Not at all • “What irks me was – they knew she was dying, they all knew she was dying, because they brought palliative care in...Not one person came near us. Not a nurse, not a doctor, nothing....nobody came near us all day …give us a bit more information, help us through that day. Say, „look, the process is going quicker than we expected, we didn‟t expect this‟, explain to us, don‟t just land it in our lap… that‟s something they really – I think that they should work on…” P1 004 • “Nobody‟s telling me anything, saying „your husband is dying‟. Nobody said that. 10:00 o‟clock in the morning, they knew he was dying.” 088
  28. 28. • “So I took the hotel across the road and I said to them if there is any little – something – just call me. But they didn‟t. So at least maybe I could see him before, but they didn‟t. No one called me. They called me at 1 o‟clock in the morning when [name] was already in theatre after he had heart attack.” 009 • “...and we were told she had two weeks to live. So that was quite shocking... interestingly, about a month after she was in this, a month after her first admission, the GP told us that mum had been handed over to him as a palliative care patient. And that was the first time we‟d heard of it. And she wasn‟t told about that either... And we had a problem with that, a very big problem with that, because we felt that we were denied important information.” 043
  29. 29. Blunt is better than not at all! • P2: Doctor (name) was really blunt. ...P1: At that point (Doctor name) said “Well look we can let him go at this point”. He said “It will probably be half and hour and he‟s gone, or we can do surgery”, and again he gave a bleak outcome from the surgery. He said “If we‟ve got to go and cut him open again, that‟s five times in a couple of weeks. He‟d be really unlikely to survive that”, and “What do you want to do?”This is just me in there after work, so I‟m trying to call the family and get them all to come in as quickly as they can. I ended up having to make the decision myself I think. I said “Look dad has been trying to fight this, he‟s been making us help him do his exercises. He‟s astounded you with how well he can cope already, let‟s get him through the imagery and see what the… let‟s do that first, and then we‟ll deal with whether we have to deal with surgery or not”. It turns out they didn‟t have to.” 031
  30. 30. Conclusion • Patients need to feel empowered to speak up when they feel something is not right AND they need to be listed to when they do; • The emotional response experienced by family members of deteriorating patients means they often fail to comprehend the information provided to them: – Information should be provided early, clearly and in the presence of a support person; – Family members should be asked if they understand what is happening;
  31. 31. Discussion Patient engagement in RRT interventions – The literature • • • • • Gerdik C, Valilsh R, Miles K, Godwin s, Wludyka P, & Panni M. (2010) Successful implementation of a family and patient activated rapid response team in an adult level 1 trauma center Resuscitation, Vol 81 (12) 1676–1681. Dean B, decker M, Hupp D, et al (2008) Condition HELP: a pediatric rapid response team triggered by patients and parents, J Healthc Qual. May-Jun;30(3):28-31. Winters B, Weaver S, Pfoh E, Yang T,Pham J, and Dy S. (2013) Rapid-Response Systems as a Patient Safety Strategy A Systematic Review Annals of Internal Medicine 158(5) pt 2 Downloaded From: http://annals.org/ on 09/16/2013. Rainey H, Ehrich K, Mackintosh N and Sandall J. (2013) The role of patients and their relatives in „speaking up‟ about their own safety – a qualitative study of acute illness Health Expectations, doi: 10.1111/hex.12044 Berger Z, Flickinger T, and Dy S. Chapter 32 Promoting Engagement by Patients and Families To Reduce Adverse Events (2013) in Making Health Care Safer II: An Updated Critical Analysis of the Evidence for Patient Safety Practices. Evidence Reports/Technology Assessments, No. 211.Rockville (MD): Agency for Healthcare Research and Quality (US); 2013 Mar.
  32. 32. Straw Poll • Does you organisation facilitate family initiated RRTs/METs? If so how? • How do service providers and clinicians experience that? • Do you regard relatives' calls as vexatious, a waste of time, ineffective, effective, other?

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