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

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.

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

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.

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.

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

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

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

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.

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.

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;

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.

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.

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.

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.

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.”

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…”

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)

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

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

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

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.

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

• “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

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.

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

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

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

• “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

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

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;

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.

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?