1. electronic Palliative Care Summary (ePCS)
December 2009
Dr Peter Kiehlmann
GP, Aberdeen & National Clinical Lead
Palliative Care eHealth

2. Ann 43 years Diagnosed Breast cancer Dec Intensive investigations
Planned surgery
Cancelled
Rapid deterioration – liver, brain spread
Died after weekend 999 admission Feb

3. … daughter
“I feel that even when my mother was diagnosed with cancer that I was left to deal with it without professional help…”
“…although I argued and screamed at the hospital doctors they would not listen until it was too late….”

4. Improving experience? No key GP- changes in practice
Communication & coordination in secondary care
Failure to recognise divide between
expectations and reality
Impact of investigations
Symptom control
SEA
Bereavement support

5. 3 Steps in Gold Standards Framework
3. Plan
2. Assess
+ communicate
1. Identify

6. C4 Continuity Out of Hours
GSFS - Key Tasks - 7 Cs
Cancer Register & Team Meetings, Pt info, Treatment cards, PHR
Key Person, Checklist
Assessment, body chart, SPC etc
Faxed Form
Learning about conditions on patients seen
Practical, emotional, bereavement, National Carer’s Strategy
C7 Care in dying phase
C1 Communication
C2 Co-ordinator
C3 Control of Symptoms
C4 Continuity Out of Hours
C5 Continued Learning
C6 Carer Support

7. Reactive patient journey: in last months of life
GP and DN ad hoc arrangements & no ACP in place
- was PPoC discussed or anticipated?
- what is pt/carer understanding of diagnosis /prognosis?
Problems of anxiety & symptom control
OOH Crisis call - no ACPor drugs available in the home
Admitted to and dies in hospital
Was Carer supported before/after loved one’s death?
Did OOH, PHCT or Hospital reflect on care given?
Was use of hospital bed appropriate?

8. GSFS Proactive pt journey: in last months of life
On Pall Care Register - reviewed at PHCT meeting (C1)
DS1500 and info given to pt + carer (home pack) (C1, C6)
Regular support, visits phone calls - proactive (C1, C2)
Assessment of symptoms, partnership with SPC - customised care to pt and carer needs (C3)
Carer assessed incl psychosocial needs (C3, C6)
Preferred Place of Care (PPoC) noted & organised (C1, C2)
OOH form sent – care plan & drugs in home (C4)
End of Life pathway/LCP/minimum protocol used (C7)
Pt dies in their preferred place - bereavement support
Staff reflect-SEA, audit gaps improve care, learn (C5, C6)

9. Aims
Patient-centred information clearly documented – better, safer experience, in preferred place of care, with fewer crisis admissions
Carers - feel supported, informed,
involved, acknowledged, empowered
Staff – clear instant access to relevant information, increase in confidence, teamwork, communication, job satisfaction
“ more time to spend caring for patients & families”
A move from Reactive to Anticipatory Care

10. Illness trajectories GP will have 20 pts die every year
Cancer
Organ
failure
Dementia
and
decline
Sudden death B
An average GP with a list of 1,500 patients will have 20 of them die each year
Of these ¼ will die of Cancer
1/3 Organ Failure
1/3 Frailty/Dementia and
1/12 sudden death
If you could choose – which way would you like to die?
Ask for show of hands for each
The sudden deaths cannot be predicted, but it is said that the other 3 follow “disease trajectories”
People with cancer are more likely to have a holistic approach, to have been asked about PPoC, Spiritual and financial needs and much less likely to have inappropriate resuscitation measures
Those with organ failure may have many acute episodes of serious life threatening illness, and have resuscitative Rx; becoming progressively less able until their terminal event
While those with frailty/dementia may may multiple co-morbidities and very slow decline over many years. C

11. Palliative Care for whom?
diagnosis of a progressive or life-limiting illness
critical events or significant deterioration during the disease trajectory indicating the need for a change in care and management
significant changes in patient or carer ability to ‘cope’ indicating the need for additional support
the ‘surprise question’ (clinicians would not be surprised if the patient were to die within the next 12 months)
onset of the end of life phase –‘diagnosing dying’

12. Place of death Scotland 1981-2006

13. So by 2030… if current trends continue
home deaths will reduce by 42.3%
Less than one in 10 (9.6%) will die at home
increase in institutional deaths of 20.3%.

14. Choice-preferred/actual place of death Higginson I (2003) Priorities for End of Life Care in England Wales and Scotland National Council
Place: Home Hospital Hospice Care Home
Preference 56% % % %
Cancer % % % %
All causes 20% % % %

15. What stops people dying at home
What stops people dying at home? Susan Munroe, Marie Curie Cancer Care and Scott Murray, University of Edinburgh, & Scottish Partnership for Palliative Care 2005
Sometimes symptoms change rapidly and often in these cases hospital or hospice admission is entirely appropriate, but not always. If adequate specialist advise was available 24 hours some of these could be prevented.
If carers are coping on their own day after day and night after night with little support they become exhausted. Community support is available but not necessarily accessed when it is needed.
Because fewer people die at home fewer people are aware that it can happen and more people are frightened of death, especially death in the house. Coffin not in house any longer. This makes patient choice and planning for their preferred place of death more difficult.
Health care professionals are still shy about discussing with patients that they are dying.
Social deprivation is a factor. Sometimes the home is not suitable for care at home, particularly if special equipment, such as a hospital bed, is required.
Very often patients or their families have a real and genuine desire not to die at home. This must be respected.
Linked to carer breakdown and symptom management. Access to community palliative care services is inequitable across Scotland.
OOH responsible for care of patients for 75% of the week. – will discuss in more detail shortly.
In an evaluation of Hospice at Home Service( King et al 2000) 82% of the patients died at home. Most crises occurred at the weekend, 2/3 of them were related to carer stress but 1/3 of the patients had deteriorated rapidly. The carers liked the service.
Home situation
Patient and family wishes
Lack of services
Admitted by out of hours doctor
Symptoms
Carer Breakdown
They don’t know they can
They don’t know they are dying

16. Policy and Strategies etc- Palliative Care in Scotland
SPPC
Ensure equitable access to palliative and end of life care
Based on clinical need – not diagnosis
Living with – as well as the dying from …..
Initial focus on the care likely to be delivered in last 12 months
Address current inequalities in standards of and access to palliative and end of life care
Facilitate the sharing of best practice
Enable Scots to make informed decisions about palliative and end of life care
BHBC
We are committed to the delivery of high quality palliative care
to everyone in Scotland who needs it,
on the basis of need not diagnosis,
and according to established principles of equity and personal dignity.
Extend the use of high quality
generalist palliative care standards in all care settings
Audit Scotland
Significant variation in the availability of specialist palliative care services.
Significant variation in how easily patients with complex needs can access these services.
Most palliative care is provided by generalist staff in hospitals, care homes or patients’ own homes
Palliative care needs are not always recognised or well supported
Generalists need increased skills and confidence
Palliative care needs to be better joined up, particularly at night and weekends

17. Living and Dying Well

18. Living and Dying Well
Assessment and Review of palliative and end of life care needs
Planning and delivery of care for patients with palliative and end of life care needs
Communication and Coordination
Education, training and workforce development
Implementation and future developments

20. Activities from Living and Dying Well
Board Delivery Plans
Triggers and Assessment tools
Palliative Care Registers
Service Information Directories
Community Nursing
Care Homes
Education champions
Anticipatory Rx & Equipment
DNA CPR Policy
E-Health inc. ePCS
1st 6month review encouraging
SPPC
Ensure equitable access to palliative and end of life care
Based on clinical need – not diagnosis
Living with – as well as the dying from …..
Initial focus on the care likely to be delivered in last 12 months
Address current inequalities in standards of and access to palliative and end of life care
Facilitate the sharing of best practice
Enable Scots to make informed decisions about palliative and end of life care
BHBC
We are committed to the delivery of high quality palliative care
to everyone in Scotland who needs it,
on the basis of need not diagnosis,
and according to established principles of equity and personal dignity.
Extend the use of high quality
generalist palliative care standards in all care settings
Audit Scotland
Significant variation in the availability of specialist palliative care services.
Significant variation in how easily patients with complex needs can access these services.
Most palliative care is provided by generalist staff in hospitals, care homes or patients’ own homes
Palliative care needs are not always recognised or well supported
Generalists need increased skills and confidence
Palliative care needs to be better joined up, particularly at night and weekends

21. Why ePCS? Since New GP Contract GPs not responsible 24/7
Many formats sent by GPs - OOH
Handwritten
Print out of entire Medical Record
No consistent format
Transcribed by OOH staff
Risks to safe, effective patient care

22. ECS New GP Contract GP not responsible 24/7
Risks to safe, effective care
Patient info from GP computers
-> ECS store twice daily
Medication & Allergies
99.5% of GP Practices
>5.4 million patients
Explicit Consent to view
‘Read only’ available to…
NHS24, A&E, AMAU, SAS

23. ePCS - What is it? An electronic Palliative Care Summary
An extension to Emergency Care Summary (ECS) &
Gold Standards Framework Scotland (GSFS)
For use both In Hours & OOH
ePCS replaces current faxed communications
Allows GPs & Nurses to record in one place
Diagnosis, Rx, Pt Understanding & Wishes, Anticipatory Care Plans, review dates, lists for meetings

24. Emergency Care Summary –benefits
Covers 99%+ of population
Used by over 8500 NHS staff
40,000 accesses per week
(4.1 million to date)
EU-commissioned independent evaluation
Benefits found included:
patient safety, time saving, faster treatment decisions
financial value assigned to costs and benefits, over time….

25. ePCS Overview OOH clinician ePCS display NHS 24 A&E TBD… GP /DN
Ambulance
TBD…
GP /DN
consultation
ePCS update
1. During consultation
2. Due to prescription
3. Team meeting or other contact
ECS Store
Audit
trail
Practice Admin. Staff

26. ePCS Dataset Consent - Palliative care data transfer
Carer details and key professionals
Diagnosis – as agreed by patient by pt & GP
Current Rx –Rpt, 30/7 Acute, Allergies;
Patient wishes
Preferred Place of Care [PPoC] )
DNA CPR decision ) Anticipatory
Patient’s & Carer’s understanding of ) Care diagnosis/prognosis ) Plan
Just in Case – Rx & equipment )
Advice for OOH care )
GP Mobile no., death expected? Cert. etc )

27. EMIS - Summary Examples of screenshots This is std EMIS Summary page
84 yr man with extensive med Hx
Lung cancer and widespread mets

28. ePCS no diagnosis added yet
This is GSFS Screen – no diagnosis chosen yet

29. Diagnosis agreed with pt & added
The malignancy plus diabetes are added for sending OOH

30. Patient/Carer Wishes
This screen shows pts wishes

31. GP View – Dr Brown Dalmellington ePCS on Gpass
Live document
Easily updatable
Can be filled in by any member of team
Out of hours only need notified when initially commenced.
This screen shows pts wishes 31

33. New ECS build screenshots
Access to PCS Information

34. Base ePCS –view in Adastra

35. Mobile ePCS - Adastra

36. Using ePCS in practice – a continuing process
Does this pt have Palliative Care Needs?
Add to Pall Care Register,
Once Consents to send ePCS ->OOH,
agree Medical History, set review date
Once consented any new info goes automatically
Not expected to complete in one go!
Complete pt wishes and Understanding, DNA CPR, record “Just in case” Rx and Equipment as appropriate
Regular review at PHCT
Keep updating!

37. Palliative Care DES (1 of 26!)
1. Put pt on Palliative Care Register
Clinical, Pt choice, Surprise Question
From Prognostic Indicator Guidance
2. Make Anticipatory Care Plan – as ePCS
3. Send OOH form/ePCS within 2w
4. When dying use LCP /locally agreed pathway
Aim- encourage anticipatory care, for all diagnoses

38. When will it be available?
Pilots completed Aug 09
EMIS, Vision – Grampian, Gpass – A&A, Lothian
Issues addressed included
acceptability & ease of use,
improving the consultation & communication,
anticipatory care planning,
NHS Lothian Rollout Sep 09
Vision more user-friendly late 09
Evaluation, national rollout late 09
Link with Board Leads for timings
Palliative Care, eHealth,OOH

39. ePCS – Benefits Natural progression from GSFS & ECS
Fits into day to day work of GPs & DNs
Aims to identify patients “upstream”
ie last 6-12 months, not just last days/weeks
Encourages Anticipatory Care Planning
Prompts to remind to ask about “difficult” issues
“Just in Case”, DNA CPR, PPoC
Shares critical info. on vulnerable
patients at important times.
OOH & Secondary Care say
it transforms care
Patients & carers reassured
Safer, better experience
summary

40. Questions? How best to roll out in your Board?
Lothian Pall Care/Oncology Discharge letters
Benefits to Sec Care EPS /ePCS
Meetings planned with key stakeholders
eHealth
Primary Care
Palliative Care
OOH
Living and Dying Well delivery 2010
Assessment Tools
Anticipatory Care Plans
Palliative Care DES ongoing
Communication Training
National Resuscitation Policy – DNA CPR
“Public awareness Death, Dying & Bereavement” 40