Difficult discussions at the end of life SCIMP Nov 2010 Using the electronic Palliative Care Summary (ePCS) & Key Information Summary (KIS) as Anticipatory Care Plans Dr Peter Kiehlmann GP, Aberdeen & National Clinical Lead Palliative Care eHealth Dr Libby Morris GP, Edinburgh & National Clinical Lead Primary Care eHealth

Questions? What is ePCS? Who can use it? How does it help Patients & carers Staff In-hours Out of hours? Developing an Anticipatory Care Plan Future developments – Key Information Summary (KIS)

The maze of trees

“How we care for the dying must surely be an indicator of how we care for all our sick and vulnerable patients. Care of the dying is urgent care – with only one opportunity to get it right, to create a potential lasting memory for relatives and carers…” Professor Mike Richards CBE

Living and Dying Well “ to ensure a comprehensive approach to palliative care based on clinical need and not diagnosis, age, post code, creed or ethnicity” Outputs from many expert groups GMC Guidance on End of Life Treatment and care How to help Clinical staff to have confidence to deliver quality Pall & End of Life Care

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

ECS Patient info from GP computers -> ECS store twice daily Medication & Allergies 97% of GP Practices >5 million patients Explicit Consent to view ‘Read only’ available to… NHS24, A&E, AMAU, SAS

Covers 99%+ of population Used by 4500 NHS staff 50,000 accesses per week (3.5million 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…. Emergency Care Summary –benefits

Usage & progress of ECS Pilot 2004, full rollout 2006 Over 5.3 million patient records 1900 patient opt-outs (0.03%) 5.5 million clinical accesses to ECS since launch Average 195,000 accesses per month 2.17 million ECS accesses were made from Jan – Dec 2009, an increase of 37% from 2008

Total Accesses Jan Feb Mar Apr May Jun Jul Aug Sept Oct NovDec Month Accesses

Ongoing ECS Projects Go live with Scottish Ambulance Service In Cab paramedic use Integration with Clinical Portal North and West Portals in testing Integration with National PMS InterSystems developing user interface Integration with FairWarning Audit reporting linked to use of other eHealth systems

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

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 )

EMIS - Summary

ePCS no diagnosis added yet

Diagnosis agreed with pt & added

Patient/Carer Wishes

New ECS build screenshots Access to PCS Information

Base ePCS –view in Adastra

Mobile ePCS - Adastra

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

Profile of People who die UK1900 / Age at death 46 Top 3 causes 1. Infectious diseases 2. Accident 3. Childbirth Disability before death  Not much UK 2000 Age at death 78 Top 3 causes 1. Cancer 2. Organ failure 3. Frailty/ dementia Disability before death  Months - many years

Death High Low Many years Function Death High Low Months or years Function Organ failure 6 Acute 2 Dementia, frailty and decline 7 Death High Low Weeks, months, years Function 5 Cancer GP has 20 deaths per list of 2000 patients per year How to deliver End of Life care for all?

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

Current ePCS Use – Aug 2010 Health Board Practices % of Total Lothian 74 54% Greater Glasgow & Clyde 42 15% Grampian 24 29% Dumfries and Galloway 10 28% Forth Valley 8 Ayrshire & Arran 5 Lanarkshire 5 Western Isles 2 Orkney % Total summaries 1281

N3 Links to Hospices N3 Link required to access ePCS Orders placed by each Health Board through national N3 contract Lothian link to Marie Curie underway Completion by end of 2010 Other links in planning Will also enable access to other NHS systems (SCI Gateway, PMS, SCI Store…)

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

Key Information Summary Proposal / Early development stage Aims to replace paper based faxing of “Special Notes” from GP Practices More generic version of ePCS Support for: electronic Anticipatory Care Plans (eACP) Long Term Conditions Mental Health Use existing infrastructure and process

Principles of KIS Patient consent required to send information Explicit Consent to view record Review date & consent only mandatory fields Flexible Only send information required Focused on Patient Wishes and Safety KIS sent automatically to ECS Further consultation with patients and clinicians to be carried out

4 Sections on KIS Section 1 – “Special Note” Free text field for information (usually to OOH) Review date and consent Patient and Carer details Section 2 – Current Situation Main Diagnosis and Current Issues ACP / Self Management Plan agreement BP and Oxygen

4 Sections on KIS Section 3 – Care and Support details Homecare support Incapacity / Guardianship Power of Attorney Section 4 –Information and Action for OOH / A+E DNACPR Current and Preferred Place of Care

KIS Next Steps Further consultation planned Development of specifications and plan Discussions with GP Suppliers Discussions with End Users Accelerate to support eACP timescales Learn from ePCS rollout…. Maintain patient focus

Summary ePCS rollout well underway with increasing use and clinical benefit Further projects underway on ECS to build upon existing infrastructure and process Key Information Summary (KIS) expected to make significant difference to patient safety and care

Thank you Dr Peter Kiehlmann GP, Aberdeen & National Clinical Lead Palliative Care eHealth Dr Libby Morris GP, Edinburgh & National Clinical Lead Primary Care eHealth

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