The Wales perspective of using an ICP for the last days of life Dr Helen Mitchell Dr Marlise Poolman Ros Johnstone
Population reporting 'good' general health (Darker colours indicate better health) Wales local authorities, 2011
Population reporting 'good' general health (Darker colours indicate better health) English local authorities, 2011
UK Mortality Statistics Wales England Scotland NI UK Population estimate (millions) All deaths (ONS, GROS, NISRA, 2012) 3 53 5 2 63 31,502 467,829 54,937 14,756 569,024 Deaths from cancer (Cancer Research UK, 2011) 8,630 131,032 15,457 4,059 159,178
Health Boards in Wales
Number of deaths by Welsh health board Total deaths 31,502 Office of National Statistics, 2012
ICP for the Last Days of Life
Care pathways for the dying To transfer the hospice model of best practice to other settings a good death for ALL 1994: Liverpool care pathway developed by MCPCIL 2000: All Wales ICP for the last days of life launched across Wales A system for centrally collecting, analysing and feeding back outcomes from the ICP was implemented alongside the clinical use of the pathway.
ICP for the last days of life 2000-9 15,000 deaths in Wales Widespread use - all hospitals, all hospices and most community settings Recommended in NICE guidance Included in GMC guidance on decisions in End of Life Care (July 2010) Publications in peer reviewed journals
ICP changes made in 2012 Criteria for use strengthened: Reversible causes of deterioration have been excluded The patient and / or family are aware that the patient is in the last days of life The clinical team agree that the ICP is appropriate Patient priorities assessed & documented Hydration / nutritional needs reviewed if appropriate (and discussed with relatives) Suggested medication reviewed
A ll W a le s In te g r a te d C a r e P r io r itie s fo r th e L a s t D a y s o f L ife (IC P ) T h is m u lti-d is c ip lin a r y d o c u m e n t is p a r t o f th e c o n fid e n tia l c lin ic a l r e c o r d. T h e IC P D o c u m e n t is o n ly a g u id e to c a re fo r th e p a tie n t a n d th e ir fa m ily in th e la s t d a y s o f life. T h is IC P is b a s e d o n b e s t a c c e p te d p ra c tic e. E a c h p ro fe s s io n a l s h o u ld e x e rc is e th e ir p ro fe s s io n a l ju d g m e n t w h e n u s in g th is g u id a n c e. M e d ic a l & N u r s in g A s s e s s m e n ts s h o u ld b e c o m p le te d w h e n c a re is g u id e d b y IC P R is k a s s e s s m e n ts (p re s s u re a re a, p e rs o n a l c a re e tc.) c o n tin u e a s b e fo re O n g o in g r e v ie w (n u rs in g ) s h o u ld b e c o m p le te d 4 h o u r ly o r at e a c h v is it, u s in g a n e w s h e e t daily. V a r ia n c e o c c u rs if a n u n e x p e c te d e v e n t o c c u rs. A n y v a ria n c e s h o u ld b e re c o rd e d o n th e v a ria n c e s h e e t, If a b o x in ita lic s is tic k e d, e x p la in a c tio n /in a c tio n o n v a ria n c e s h e e t. N.B. A v a r ia n c e is n o t w r o n g, b u t it is im p o rta n t to re c o rd it, to h e lp w ith q u a lity and a u d it. M u lti-d is c ip lin a r y p r o g r e s s n o te s a llo w s c o p e to re c o rd a n y th in g n o t c o v e re d b y th e IC P. T h e s e n o te s s h o u ld re c o rd c o m m u n ic a tio n w ith th e p a tie n t a n d fa m ily. T h is d o c u m e n t re p la c e s th e m e d ic a l a n d n u rs in g n o te s d u rin g th is p e rio d o f c a re. T h e IC P s h o u ld o n ly b e u s e d w h e n th e fo llo w in g th re e c rite ria h a v e A L L b e e n fu lfille d : R e v e rs ib le c a u s e s o f d e te rio ra tio n h a v e b e e n e x c lu d e d T h e p a tie n t a n d /o r fa m ily a re a w a re th a t th e p a tie n t is in th e la s t d a y s o f life T h e c lin ic a l te a m a g re e th a t th e IC P is a p p ro p ria te
Sites using the Wales ICP
The Variance Sheet Key component of any ICP Records a change to expected plan of care Feedback from Variance events informs the tool and can change practice Quality monitoring tool Supports audit Not WRONG just a variation from what was expected Atwal and Caldwell (2002): any deviation from the proposed standard of care listed in the pathway. The recording of variances gives staff a means to practice professional autonomy as it enables them to individualize care
Sites returning ICP Variance Sheets by Health Board Area Variances Returned April 2010 Variances Returned April 2011 Variances Returned April 2012 Variances Returned April 2013 Hywel Dda Health Board 535 711 984 804 Cardiff & Vale University Health Board Betsi Cadwaladr University Health Board 628 702 907 842 551 636 711 861 Aneurin Bevan Health Board 456 612 602 611 Cwm Taf Health Board 86 184 194 377 Abertawe Bro Morgannwg University Health Board 150 245 191 177 Powys Teaching Health Board 88 127 149 156 Total 2,494 3,217 3,738 3,828
% Reported Variances ICP Variance Analysis:All Sites, Pain, Agitation & Rattle April 2013 n=2124 100 90 80 70 60 50 40 30 20 10 0 19 18 14 81 82 86 Pain Agitation Rattle Symptom Variances % Variance % No Variances
Bench-marking meetings Twice yearly 3 regional sites (North, Mid, South Wales) Project team and user participation Feedback on local performance Comparison to similar clinical settings Discussion / reflection on local issues Shared learning and future planning
% Reported Variances Bench-marking ICP Variance Analysis:Community North PAIN April 2013 100 75 25 22 38 13 19 56 31 22 26 50 25 75 78 62 87 81 44 69 78 74 %Goal Variance %Goal Achieved 0 NWM21C NWM15C NWM24C NWM25C NWM50DN NWM14C NWM48DN NWM49M POWYS Community North
% reported Variance POWYS SCA8COM SCA16COM SCA4COM SCA7COM SCA63CE GW5 GW2 GW4 GW3 SCA6COM GW1 Bench-marking ICP Variance Analysis: Community SOUTH &POWYS PAIN April 2013 100 13 19 24 22 29 17 19 17 9 35 34 26 75 50 87 81 76 78 71 83 81 83 91 65 66 74 %Goal Variance %Goal Achieved 25 0 Community SOUTH & Powys
ICP for the last days of life: Annual audit Annual audit cycle established in 2008 Audit provides additional information about how the tool is used to deliver end of life care. Documentation review to: ascertain completeness of record keeping within the ICP check most current ICP version is in use identify strengths and weaknesses, to target future training and education.
2013 Audit 51 sites using ICP in Wales asked to participate Each site to review 10 case notes where patient died on ICP. 61% response rate 31 sites across all 7 Welsh Health Boards 234 cases for review
Audit results 2013 % % Not No. Standard Achieved Achieved 1. Documentation 83 17 2. Medical Measures 94 6 3. Nursing Assessment 81 19 4. Communication 86 16 5. Daily review 76 24 6. Religious/Spiritual Support 64 36 7. Variance Reporting 80 20 8. Variance Sheet Demographic Data 62 38 9. PRN Medications 95 5 10. Syringe Driver Charts 68 32 11. Were the recommended drugs available 95 5
Audit results 2013 Compared to previous outcomes, improvement on most of the 11 goals Exception of Syringe Driver Charts Many sites use in-house documentation rather than the charts included in the ICP Record of Religious/Spiritual support has improved from 26% in 2012, to 64% in 2013 Variance reporting remains an issue. Training and education will be targeted accordingly
Action points Training and Education to target issues around variance reporting using the ICP independently from the main medical records record keeping in general: if it is not recorded, it did not happen completion of syringe driver charts Consider including All Wales medication charts with ICP documentation
Recent developments
Neuberger Enquiry / Report July 2013 44 recommendations regarding use of the Liverpool Care Pathway Main messages from Welsh viewpoint:- Communication with families poor Responsibility for care unclear Support lacking out of hours / for junior teams Rigid implementation of guidance (e.g. fluids) Need for individual / personalised care plans
ICP in Wales Current Strengths Concise documentation Discussion with family & carers is key Clinicians prompted to check appropriate actions taken eg fluids / other treatments Centrally led audit / feedback mechanism Devolved management and education delivery maintains local ownership
ICP in Wales Areas of potential concern Evidencing senior clinical responsibility consultant / GP sign off? Individualised / personal care delivery - how to demonstrate this Adequate audit and monitoring - variances under-reported Does the ICP actually improve quality? research needed to assess effect of ICP on quality of care delivered / received
ICP in Wales - Where now? Feedback from users and national leaders has informed future proposals:- Continue to use the ICP as a valuable tool Keep to current simple format Clarify senior clinician taking responsibility Strengthen communication between families and clinical teams
ICP in Wales - Where now? Review (re-name?) variance sheet Include individualised care plan Include other relevant data measures (preferred place of death documented?) Support discussion about starting the ICP with an information leaflet
ICP in Wales - Where now? Improve quality of local and national audit data Develop programme of research to assess impact of ICP on quality of end of life care
WCCPP research agenda To improve understanding and quality of variance reporting To seek alternative methods of ICP data collection (including qualitative and quantitative measures) To include the carer experience To evidence the effectiveness of the ICP in delivering end of life care
ICP in Wales - Conclusions Nationally agreed end of life care tool used in hospital, hospice and community settings Locally evolved to suit the different care environments throughout Wales Centralised system for the collection, analysis and return of variance sheets (29,700 reports to date) Annual audit cycle to monitor activity Systematic support and feedback to clinical teams.
ICP in Wales - Conclusions Recent LCP enquiry has triggered constructive critical review and highlighted need for renewed education Centrally led but locally delivered training supports ongoing use of ICP WCCPP team challenged to improve quality of data returns and evidence good care via future research activity
http://wales.pallcare.info/ National web resource with updates on national projects and activities educational information and news link to All Wales ICP for last days of life clinical guidelines for symptom control
Further information Palliative Care in Wales http://www.wales.nhs.uk/palliativecare Together for Health Delivering End of Life Care. A Delivery Plan up to 2016 for NHS Wales and its Partners Welsh Government 2013
Wales ICP for the Last Days of Life Dr Helen Mitchell Clinical Lead Dr Marlise Poolman Academic Lead Ros Johnstone Project Manager