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

Welcome and introductions

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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

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Update and overview of the AMBER care bundle

Irene Carey

Guy’s and St Thomas’ Foundation Trust

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

“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.”

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

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

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

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

10Source: GSTFT, 2010

Patients whose recovery is uncertain

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

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)

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

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%

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

MedianInter-quartile range

47%33-58%

(number of hospitals = 10)

20%14-22%

(number of hospitals = 5)

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[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.

Staff, patient, carer feedback

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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”

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

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Source: AMBER design team, Guy’s and St Thomas’ Foundation Trust July 2014

Current developments

• Version 4 of the AMBER care bundle• National e-learning tool • Evaluation with further implementation:

current HTA proposal led by CSI• Sustainability

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

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Experience of facilitating change in clinical practice

Rob Smith

Royal Derby Hospitals

AMBER care bundle: The missing piece of the EOLC puzzle

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.

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.

How can I make sure my wishes for the future are known?

Facing a life limiting illness is a frightening anduncertain time.

Derby Hospitals are working hard to support patientsand their families to ensure that their wishes andpreferences for care are met.

For more information, speak to your ward team.

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.

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.

Evolve:

Get the best from the “ACT” stickers:

Make friends – find your key players

Skills and education needs ..

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Measure…

Expect hurdles:

Sustainability:  How and when to pass the baton

But…

• Needs education and training• Needs ongoing facilitation• Needs further formal evaluation regarding

benefits and unintended consequences

Questions?

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• 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

International

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Australia …

8 hospitals NSW

Similar experience to our English Network

Wales & New Zealand