electronic Palliative Care Summary (ePCS)

December 2009

Dr Peter KiehlmannGP, Aberdeen & National Clinical Lead

Palliative Care eHealth

peter.kiehlmann@scotland.gsi.gov.uk

http://www.scotland.gov.uk/Topics/Health/NHS-Scotland/LivingandDyingWellhttp://www.ecs.scot.nhs.uk/epcs.html

Ann

43 yearsDiagnosed Breast cancer Dec Intensive investigationsPlanned surgeryCancelledRapid deterioration – liver, brain spreadDied after weekend 999 admission Feb

… 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….”

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

3 Steps in Gold Standards Framework

1. Identify

2. Assess

3. Plan

+ com

munic

ate

GSFS - Key Tasks - 7 Cs

C1 Communication

C2 Co-ordinator

C3 Control of Symptoms

C4 Continuity Out of Hours

C5 Continued Learning

C6 Carer Support

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

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?

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)

Illness trajectories GP will have 20 pts die every year

Cancer

Dementiaand

decline

A

B

C

Organ

failure

Sudden death

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’

Place of death Scotland 1981-2006

Place of death. Scotland 1981 to 2006 Source GRO Scotland

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

1981

1982

1983

1984

1985

1986

1987

1988

1989

1990

1991

1992

1993

1994

1995

1996

1997

1998

1999

2000

2001

2002

2003

2004

2005

2006

Home

NursingHomesetc.

Hospital

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%.

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% 11% 24% 4%

Cancer 25% 47% 17% 12%

All causes 20% 56% 4% 20%

What stops people dying at home?

Susan Munroe, Marie Curie Cancer Care and Scott Murray, University of Edinburgh, & Scottish Partnership for Palliative Care 2005

Symptoms Carer Breakdown They don’t know

they can They don’t know

they are dying

Home situation Patient and family

wishes Lack of services Admitted by out of

hours doctor

Living and Dying Well

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

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

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

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

ePCS Overview

OOH clinician ePCS display

ePCS update 1. During

consultation

2. Due to prescription

3. Team meeting or other contact

Audit

trail

ECSStore

NHS 24

A&E

Ambulance

TBD…

Practice Admin. Staff

PracticeServer

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

GP View – Dr Brown DalmellingtonePCS on Gpass

•Live document•Easily updatable•Can be filled in by any member of team•Out of hours only need notified when initially commenced.

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 dateagree Medical History, set review date Once consented any new info goes automaticallyOnce 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 Complete pt wishes and Understanding, DNA CPR, record

“Just in case” Rx and Equipment as appropriate“Just in case” Rx and Equipment as appropriate Regular review at PHCTRegular review at PHCT Keep updating!Keep updating!

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

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

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

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”