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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
2
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
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)
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.
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”
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
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
21
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 ..
32
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?
37
• 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
39
Australia …
8 hospitals NSW
Similar experience to our English Network
Wales & New Zealand