Transforming End of Life Care in Acute Hospitals AM Workshop 2: AMBER Care Bundle by Dr Irene Carey, Susanna Shouls, Guy’s and St Thomas’ NHS Foundation Trust

1. Improving the quality of care for
patients whose recovery is
uncertain
Transforming End of Life Care in
Acute Hospitals
Irene Carey, Robert Smith, Susanna Shouls
The AMBER Network
18th November 2015

2. Welcome and introductions
2

3. Overview
1. Update and overview of the AMBER
care bundle - Irene Carey
2. Table discussions and feedback
3. Practical experience of facilitating
change in practice – Rob Smith
4. Final Q&A
3

4. Update and overview of
the AMBER care bundle
Irene Carey
Guy’s and St Thomas’
Foundation Trust

5. Ambitions for Palliative and
End of Life Care 2015-2020
• Each person is seen as an
individual
– Honest conversations; systems
for effective care planning and
coordination; helping people
take control; know what they can
expect; supporting those
important to person
• Each person gets fair access to
care
– Generate data to guide strategy;
person centred outcome
measurements
• Maximising comfort and wellbeing
– Recognise and address
distress; work to achieve
personal goals
• Care is coordinated
– Care records encompass needs
and preferences and shared;
joined up thinking and working
• All staff are prepared to care
– Professional ethos; support
resilience and compassion;
• Each community is prepared to
help
– Public awareness;
compassionate and resilient
communities

6. “A focus on recognition of patients who are clinically
unstable and may not recover despite medical
treatment, so that those patients and those important
them are as involved as much as possible in decisions
being made about their care, rather than focusing on a
‘diagnosis of dying’, as occurred in the LCP.”

7. My father was admitted to X for 10 days with bilateral pneumonia,
sepsis and AF...to be honest the stay he experienced was a whole
shambles. ...
He was discharged as a medically fit man despite the fact of his
apparent poorliness observed by the relatives
...his sodium levels were 150 and he should not have been
discharged. The next day he was taken via ambulance to …. where
he was found to present with bilateral pneumonia, organ failure and
dehydration…
…he is now dying but the care he is receiving could not be
faulted…
Too many questions to be answered and a heartbroken family.
My father was not discharged as terminal, he was discharged
as a medically fit man...this should never happen again to
another family!
https://www.patientopinion.org.uk/opinions/110154
Clinical uncertainty

8. After 5 misdiagnoses from my mother's GP surgery, my mother finally collapsed
at home and was taken to hospital. On the second day at hospital
she was diagnosed with terminal cancer. At the time we were told that
an oncologist or consultant would see us as a family. This
never happened.
A senior nurse was sent in by the young doctor in charge to discuss our request of
taking mother home to die, which then descended into what we found to be an
unprofessional argument. This was the first time we had even seen this senior nurse,
despite the fact that we visited every day. At no point during the whole
experience did a doctor, consultant or nurse find us to
speak to us about mother. We had to seek them out for
information or to inform them of mother's or even other patient's distress. We did not
get the opportunity to remove mother from this ghastly place, she died here on the
sixth morning at hospital.
Patientopinion.org.uk

9. Before and after
Nobody has said anything
so he must be getting better
She had no
questions, she’s
fine, she
understands what’s
going on
Nobody told me
We didn’t realise,
we weren’t sure/
We did tell her

10. Case-note review
• Focus on treatment
• Many patients likely to die while ongoing
active medical therapy
• Decision making/ escalation planning,
patient/carer involvement inconsistent
• Communication flows within (between
staff) and between organisations
10
Source: GSTFT, 2010

11. Patients whose recovery is
uncertain

13. Resulting in …
• Patient and families informed and shape care
planning
• Those whose care should be further escalated
(preferences / medical reasons) receive this
• Those whose care should remain at ward level
or involve de-escalation (preferences / medical
reasons) receive this
• Those who wish to go home have a better
chance of achieving this
• Regular and systematic update and review

14. But we do this already…
Hospital clinical audits:
Prior to implementation of the
AMBER care bundle but
retrospectively identified as
suitable
Hospital clinical audits:
Patients who received care
supported by the AMBER care
bundle
Process reliability: were all four
components of the care bundle
completed?
Median 19%
(number hospitals = 13)
100%
(number of hospitals = 5)

15. Current Impact at GSTFT
• 50-70 patients a month receive care
supported by AMBER care bundle
• >50% patients supported by AMBER
are discharged from hospital

16. Impact on readmissions:
November 2012 to October 2013 GSTFT
Patients supported by
AMBER care bundle who
died within 100 days of
discharge
Patients on same wards
who received standard care
and died within 100 days of
discharge
Total 249 1250
Number of readmissions
within 30 days
42 424
Proportion with readmission
within 30 days*
17% 34%
*95% confidence interval for difference in readmission rates: 11-22%

17. Emergency readmissions
Hospital clinical audits:
Prior to implementation of the
AMBER care bundle
Hospital clinical audits:
Patients who receive care
supported by the AMBER care
bundle
Proxy outcome indicator: patients
who were discharged and died
within 100 days, emergency
readmission rates
Median
Inter-quartile range
47%
33-58%
(number of hospitals = 10)
20%
14-22%
(number of hospitals = 5)
17
[1] The number of hospitals varies due to the ability of the hospital to supply data and the progress of hospitals in implementing the AMBER care bundle. 4
hospitals who provided before and after data showed a reduction in emergency readmission rates. The denominators are small in the 'before' data.

18. Staff, patient, carer feedback
18
I didn’t think the patient would
deteriorate so quickly.
I am glad I was able to talk to
the relatives and prepare them
for what may happen.
“Nurse”
When I mention to a doctor that I
think a patient’s recovery is
uncertain and may be suitable for
AMBER the doctor listens and
revaluates the patients medical plan
“Nurse”.
“ I think AMBER has helped staff to
escalate decisions and has highlighted
the importance of communication at all
levels”
“ AMBER helped us to
address issues in a
timely manner. It was so
great to be able to get
the patient home”
“ I have not been
well for a while. I
didn’t know how to
tell my family. I just
really want to get
home, I do not want
to die in hospital”
“ We had no idea
that Bill was so
unwell. At least now
we can help him
sort things out”

19. Network update
England: NHS Acute Hospital Trusts % n
Pilot / implementing 22% 35
Defined plans and attended a workshop 5% 8
Attended a workshop 13% 21
Expressed interest to be part of an evaluation 6% 10
Other (interest, aware, awareness unknown) 54% 89
19
Source: AMBER design team, Guy’s and St Thomas’ Foundation Trust
July 2014

20. Current developments
• Version 4 of the AMBER care bundle
• National e-learning tool
• Evaluation with further implementation:
current HTA proposal led by CSI
• Sustainability

21. Table discussion
Suggested topics
• How to systematically involve patients /
those important to them when their
recovery is uncertain in decisions about
treatment and care
• How it fits in with the other key enablers
for end of life care and treatment
escalation plans
21

22. Experience of facilitating
change in clinical practice
Rob Smith
Royal Derby Hospitals

23. AMBER care bundle:
The missing piece of the EOLC puzzle

24. Our background
• Initial workshop October 2011
• Early contact with Medicine for the Elderly
and Respiratory Medicine
• Full time Facilitator in post November 2012
• 24 wards, 60‐75 patients per month
• Success more likely with dedicated facilitator
– build a case.

25. Starting out:
• Understand and be confident in using the
approach– what impact will it have on
patients and across the hospital?
• Develop a clear means of data collection that
works for you.
• Develop good working relationship with IT
and data collection teams.

26. How can I make sure my wishes
for the future are known?
Facing a life limiting illness is a frightening and
uncertain time.
Derby Hospitals are working hard to support patients
and their families to ensure that their wishes and
preferences for care are met.
For more information, speak to your ward team.

27. Understanding the ward
• Meet with Consultants and Ward Leaders as
early as possible.
• Gain agreement for ward implementation and
support.
• Understand ward patterns, staff numbers and
best times for teaching.

28. Work with the wards
• Standard teaching, but flexible to each ward
needs, disciplines and ambitions.
• Foster ownership and sustainability early –
Who are your champions?
• Feedback regularly – bad and good.

29. Evolve:

30. Get the best from the “ACT”
stickers:

31. Make friends – find your key
players

32. Skills and education needs ..
32

33. Measure…

34. Expect hurdles:

35. Sustainability:
How and when to pass the baton

36. But…
• Needs education and training
• Needs ongoing facilitation
• Needs further formal evaluation regarding
benefits and unintended consequences

37. Questions?
37

38. • Standardised approach to care for all deteriorating patients in the
acute setting, resulting in individualised outcomes
- escalation
- de-escalation
• Continuity of care-across ward transfers or hospital discharge
• Improved communication and information-giving to patients and
carers, shaping care planning
• Improved communication and decision-making within teams to
improve the patient experience
• Regular and systematic follow up
• Early decision making can prepare families for both recovery and
further deterioration
Summary

39. International
39
Australia …
8 hospitals NSW
Similar experience to our English Network
Wales & New Zealand