LCP CENTRAL TEAM UK Liverpl Care f the Dying Pathway fr the Dying Patient (LCP) Supprting care in the last hurs r days f life LCP Central Team UK Gal Definitins - Data Dictinary fr LCP generic versin 12 T: +44 (0) 151 706 2274 Email: lcp.enquiries@rlbuht.nhs.uk Web: www.mcpcil.rg.uk December 2009 LCP V12 Gal Definitins/Data Dictinary Oct 09 Page 1 f 37
CONTENTS Page (s) What is the LCP 2 What is a care pathway 3 What is variance 3 What is the LCP cntinuus quality imprvement prgramme 4 LCP generic versin 12 cnsultatin exercise 5 Key messages fr the healthcare prfessinal using the LCP 5 6 MDT decisin making 7 Sectin 1 Initial assessment gals explained 8 27 Sectin 2 Onging assessment gals explained 28 29 Sectin 3 Care after death gals explained 30-34 Appendix 1 - LCP generic versin 12 list f gals 35 Cntact Details Debrah Murphy Assciate Directr Marie Curie Palliative Care Institute Liverpl (MCPCIL) Lead Nurse LCP Jhn Ellershaw FRCP Prfessr f Palliative Medicine Directr f Marie Curie Palliative Care Institute Liverpl (MCPCIL) Clinical Lead LCP Maria Blger LCP Facilitatr LCP Central Team Marie Curie Palliative Care Institute Liverpl (MCPCIL) C/ Directrate f Specialist Palliative Care 1 st Flr, Linda McCartney Centre Ryal Liverpl University Hspital Presct Street Liverpl L7 8XP Tel: +44 (0) 151 706 2274 Email: lcp.enquiries@rlbuht.nhs.uk Website: www.mcpcil.rg.uk LCP V12 Gal Definitins/Data Dictinary Oct 09 Page 1 f 37
What is the Liverpl Care Pathway fr the Dying Patient (LCP) Over the past few years a majr drive has been underway t ensure that all dying patients, and their relatives and carers receive a high standard f care in the last hurs r days f their life. The Liverpl Care Pathway fr the Dying Patient (LCP) within the LCP Cntinuus Quality Imprvement Prgramme is ne f the key prgrammes within the Marie Curie Palliative Care Institute Liverpl (MCPCIL) prtfli. The LCP was recgnised as a mdel f best practice in the NHS Beacn Prgramme (2001). It was then subsequently incrprated int the Cancer Services Cllabrative prject and the Natinal End f Life Care Prgramme (2004-7). It was recmmended in the NICE guidance n supprtive and palliative care fr patients with cancer (2004) as a mechanism fr identifying and addressing the needs f dying patients. It was recmmended in the Our Health, Our Care, Our Say white paper 2006 as a tl that shuld be rlled ut acrss the cuntry. It is recmmended in the End f Life Care Strategy DH (2008) and highlighted in the Department f Health End f Life Care Quality Markers dcument (2009). The LCP Cntinuus Quality Imprvement Prgramme incrprates: 1 Aim T imprve care f the dying in the last hurs r days f life 2 Key Themes T imprve the knwledge related t the prcess f dying T imprve the quality f care in the last hurs r days f life 3 Key Sectins Initial Assessment Onging Assessment Care after death 4 Key Dmains f Care Physical Psychlgical Scial Spiritual 5 Key Requirements fr Organisatinal Gvernance Clinical Decisin Making Management & Leadership Learning & Teaching Research & Develpment Gvernance & Risk LCP generic versin 12 Gal Definitins/Data Dictinary Dec 09 Page 2 f 36
What is a Care Pathway? A care pathway is a cmplex interventin fr the mutual decisin making & rganisatin f care prcesses fr a well defined grup f patients during a well defined perid. Defining characteristics f care pathways include: 5 Key Elements 1. An explicit statement f gals / key elements f care based n evidence, best practice 2. The facilitatin f the cmmunicatin amng team members & with patient s & families 3. The crdinatin f the care prcess by crdinating the rles & sequencing the activities f the MDT, patients & carers 4. The dcumentatin, mnitring & evaluatin f variances & utcmes 5. The identificatin f the apprpriate resurces Dr Kris Vanhaecht, Secretary General f the Eurpean Pathway Assciatin What is meant by the term Variance? Variance (exceptin reprting) n an integrated care pathway is a mechanism by which a seemingly prcess driven apprach t care can be tempered in line with individual patient need. The ptential t use clinical skill and judgement t deviate frm the suggested plan f care in respnse t individual patients makes the LCP a mre flexible and practical dcument. Variance prvides ther clinicians in the envirnment with a clear picture regarding the chices made and the care delivered. Fcusing specifically n the variance sheets allws clinicians t see at a glance what the majr issues have been fr the patient (and relative r carer) ver a given perid f time. When variance recrding is studied ver a crss sectin f patients, it can als highlight rganisatinal r educatinal issues that may be impacting n the delivery f care in a given envirnment. Taking care t dcument carefully n the variance sheet can, therefre, prvide a wealth f imprtant infrmatin fr clinicians and managers alike. Failing t dcument variance apprpriately tells us nthing! Variance recrding tells the true stry f the patient s jurney / cnditin. If the variance is nt cmpleted then we d nt have dcumented evidence f the care that was delivered, nr care that requires actin. LCP generic versin 12 Gal Definitins/Data Dictinary Dec 09 Page 3 f 36
What is the LCP cntinuus quality imprvement prgramme? The LCP prgramme is a cntinuus quality imprvement prgramme that can transfrm care f the dying within an envirnment. The implementatin f the prgramme will create a change situatin. Recgnitin f the fundamental aspects f a change management prgramme is pivtal t success t empwer, enable and engage thse with whm yu wrk. The service imprvement mdel used at the Marie Curie Palliative Care Institute Liverpl (MCPCIL) is a 4 phased apprach t change management within yur rganisatin in the UK with a 5 th phase fr ur internatinal clleagues. The LCP Central Team at the Institute has develped a 10 Step Cntinuus Quality Imprvement Prgramme fr Care f the Dying using the LCP prgramme. Phase 1 Inductin Phase 2 Implementatin Phase 3 Disseminatin Phase 4 Sustainability STEP 1 STEP 2 STEP 3 STEP 4 STEP 5 STEP 6 STEP 7 STEP 8 STEP 9 STEP 10 Establishing the prject preparing the envirnment Develp the Dcumentatin Base Review / Retrspective audit f current dcumentatin Inductin / Educatin Prgramme Pilt Site Clinical Implementatin f the LCP in pilt sites Maintaining and imprving cmpetencies using reflective practice and pst pathway analysis Evaluatin and further Training Cntinuus develpment f cmpetencies in rder t embed the LCP framewrk within the clinical envirnment Organisatinal recgnitin that all staff wh wrk with peple wh are dying are prperly trained t lk after dying patients and their carers within an agreed rganisatinal / educatinal strategy T establish the LCP within the gvernance / perfrmance agenda within the rganisatin / institutin It is imprtant t maintain the integrity f the LCP prgramme and enable cllabratin with clleagues within English and nn-english speaking cuntries. Any rganisatin wishing t implement the LCP will need t register with the LCP Central Team at the Marie Curie Palliative Care Institute Liverpl (MCPCIL) see website fr mre details www.mcpcil.rg.uk Learning in supprt f a cntinuus quality imprvement mdel and the develpment f the research and develpment agenda in care f the dying will be enhanced if it is agreed that the gals n the LCP remain unchanged. This prcess will supprt future ptential benchmarking mdels. This Gal Data Dictinary enables a mre explicit and rbust understanding f the cre meaning f each f the gals f care and the ratinale, required behaviur and crrect cding f infrmatin. The LCP Central Team is pleased t ffer advice and supprt regarding inductin, implementatin, disseminatin and sustainability f the LCP prgramme within clinical arenas. LCP generic versin 12 Gal Definitins/Data Dictinary Dec 09 Page 4 f 36
LCP generic versin 12 cnsultatin exercise Fllwing a 2 year cnsultatin exercise including the latest evidence frm 2 runds f the Natinal Care f the Dying Audit - Hspitals (NCDAH), LCP generic versin 12 was presented at the 6 th Annual LCP Cnference n 25 th Nvember 2009, Ryal Sciety f Medicine, Lndn and t the Natinal LCP Reference Grup n 2 nd December 2009 and subsequently the LCP cre dcumentatin was published n the Institute website. www.mcpcil.rg.uk All registered users received a cpy f the LCP generic versin 12 n the 18 th December 2009. The eths f the LCP generic dcument has remained unchanged - LCP generic versin 12 has greater clarity in key areas particularly cmmunicatin, nutritin and hydratin. Care f the dying patient and their relative r carer can be supprted effectively by either versin f the LCP. The respnsibility fr the use f the LCP generic dcument as part f a cntinuus quality imprvement prgramme sits within the gvernance f an rganisatin underpinned by a rbust nging educatin and training prgramme. We believe as with any evlving tl r technlgy that thse rganisatins wh are using the LCP generic versin 11 will wrk twards adpting versin 12. Key Messages fr the healthcare prfessinal using the LCP generic versin 12 The LCP is nly as gd as the teams using it and must be underpinned by a rbust nging educatin and training prgramme. As with all clinical guidelines and pathways the LCP aims t supprt but des nt replace clinical judgement. 10 KEY LCP Messages 1. The LCP is nly as gd as the peple wh are using it 2. The LCP shuld nt be used withut the supprt f educatin & training 3. Gd Cmmunicatin is pivtal t success 4. The LCP neither hastens nr pstpnes death 5. Diagnsis f dying shuld be made by the multidisciplinary team (MDT) 6. The LCP des nt recmmend the use f cntinuus deep sedatin 7. The LCP des nt preclude the use f artificial hydratin 8. The LCP supprts cntinual reassessment 9. Reflect, Audit, Measure & Learn 10. Stp, Think, Assess & Change The respnsibility fr the use f the LCP generic dcument as part f a cntinuus quality imprvement prgramme sits within the gvernance f an rganisatin and must be underpinned by a rbust educatin and training prgramme The Liverpl Care Pathway fr the Dying Patient (LCP) Supprting care in the last hurs r days f life LCP generic versin 12 Gal Definitins/Data Dictinary Dec 09 Page 5 f 36
Healthcare prfessinal infrmatin LCP generic versin 12 The LCP generic versin 12 includes a sectin t highlight imprtant infrmatin t the user befre the LCP is cmmenced The LCP generic dcument guides and enables healthcare prfessinals t fcus n care in the last hurs r days f life. This prvides high quality care tailred t the patient s individual needs, when their death is expected. Using the LCP in any envirnment requires regular assessment and invlves regular reflectin, challenge, critical senir decisin-making and clinical skill, in the best interest f the patient. A rbust cntinuus learning and teaching prgramme must underpin the use f the LCP. The recgnitin and diagnsis f dying is always cmplex; irrespective f previus diagnsis r histry. Uncertainty is an integral part f dying. There are ccasins when a patient wh is thught t be dying lives lnger than expected and vice versa. Seek a secnd pinin r specialist palliative care supprt as needed. Changes in care at this cmplex, uncertain time are made in the best interest f the patient and relative r carer and needs t be reviewed regularly by the multidisciplinary team (MDT). Gd cmprehensive clear cmmunicatin is pivtal and all decisins leading t a change in care delivery shuld be cmmunicated t the patient where apprpriate and t the relative r carer. The views f all cncerned must be listened t and dcumented. If a gal n the LCP is nt achieved this shuld be cded as a variance. This is nt a negative prcess but demnstrates the individual nature f the patient s cnditin based n their particular needs, yur clinical judgement and the needs f the relative r carer. The LCP des nt preclude the use f clinically assisted nutritin r hydratin r antibitics. All clinical decisins must be made in the patient s best interest. A blanket plicy f clinically assisted (artificial) nutritin r hydratin r f n clinically assisted (artificial) hydratin, is ethically indefensible and in the case f patients lacking capacity prhibited under the Mental Capacity Act (2005). Fr the purpse f this LCP generic versin 12 dcument - The term best interest includes medical, physical, emtinal, scial and spiritual and all ther factrs relevant t the patient s welfare. The patient will be assessed regularly and a frmal full MDT review must be undertaken every 3 days. LCP generic versin 12 Gal Definitins/Data Dictinary Dec 09 Page 6 f 36
MDT Decisin Making The recgnitin and diagnsis f dying is always cmplex; irrespective f previus diagnsis r histry. The LCP generic versin 12 includes a helpful algrithm t supprt the clinical decisin making prcess regarding the recgnitin and diagnsis f dying and use f the LCP t supprt care in the last hurs r days f life. The MDT assessment will include the fllwing: Is there a ptentially reversible cause fr the patient s cnditin e.g. exclude Opiid txicity, renal failure, hypercalcaemia, infectin Culd the patient be in the last hurs r days f life? Is Specialist referral needed? e.g. specialist palliative care r a secnd pinin If the patient is diagnsed as dying (in the last hurs r days f life) then this shuld be cmmunicated apprpriately. Gd cmprehensive clear cmmunicatin is pivtal and all decisins leading t a change in care delivery shuld be cmmunicated t the patient where apprpriate and t the relative r carer. The views f all cncerned must be listened t and dcumented. All decisins must be dcumented accrdingly n the LCP. This prcess reflects ther elements f healthcare clinical decisin making e.g. when a decisin is made t recrd a d nt attempt cardipulmnary resuscitatin rder. This decisin must be made by the mst senir healthcare prfessinal immediately available in the envirnment, dcumented and witnessed accrding t lcal plicy and prcedure within the rganisatinal gvernance framewrk. This decisin is then endrsed by the mst senir healthcare prfessinal respnsible fr the patient s care at the earliest pprtunity. LCP generic versin 12 calls fr the same decisin making prcess t be fllwed when diagnsing dying and cmmencing the LCP Example dcumentatin frm LCP generic versin 12 dcument (page3) Healthcare prfessinal dcumenting the MDT decisin Fllwing a full MDT assessment and a decisin t use the LCP: Date LCP cmmenced:. Time LCP cmmenced:... Name (Print):.. Signature:... This will vary accrding t circumstances and lcal gvernance arrangements. In general this shuld be the mst senir healthcare prfessinal immediately available. The decisin must be endrsed by the mst senir healthcare prfessinal respnsible fr the patient s care at the earliest pprtunity if different frm abve. Name (Print):.. Signature:... LCP generic versin 12 Gal Definitins/Data Dictinary Dec 09 Page 7 f 36
SECTION 1 INITIAL ASSESSMENT GOALS 1.1, 1.2, 1.3, 1.4, 1.5 - COMMUNICATION GOAL 1.1 The patient is able t take a full and active part in cmmunicatin Ratinale Gd cmprehensive clear cmmunicatin is pivtal and all decisins leading t a change in care delivery shuld be cmmunicated t the patient where apprpriate. The views f all cncerned must be listened t and dcumented and the aim is fr all patients, unless uncnscius, t be able t take a full and active part in cmmunicatin: T supprt cmmunicatin / psychlgical well-being / insight int care management and t assess fr barriers that have the ptential t prevent clear cmmunicatin Fr example, sme patients may nt use English as their first language r have physical r learning disabilities and may need additinal supprt t enable full engagement in cmmunicatin. Required Behaviur Cding Assess the cmmunicatin status f the patient and: If English is nt the patient s first language, cnsider the need fr interpreting service and make it available t the patient as required If the patient has physical r learning disabilities (e.g. Hearing, visin, speech, learning disabilities, dementia (use f assessment tls), neurlgical cnditins, cnfusin etc) cnsider the need fr additinal supprt and make it available t the patient as required Cde Achieved either when n supprt is needed t facilitate apprpriate cmmunicatin with the patient when the supprt required is available at this mment in time Cde Variance when yu have identified the need fr supprt t facilitate apprpriate cmmunicatin with patient but it is nt available at this mment in time A cded variance must be accmpanied by a written explanatin n the variance sheet within the LCP. Cde Uncnscius if the patient is uncnscius and is therefre nt able at this mment in time t take a full and active part in cmmunicatin. LCP generic versin 12 Gal Definitins/Data Dictinary Dec 09 Page 8 f 36
GOAL 1.2 The relative r carer is able t take a full and active part in cmmunicatin Gd cmprehensive clear cmmunicatin is pivtal and all decisins leading t a change in care delivery shuld be cmmunicated t the patient where apprpriate. The views f all cncerned must be listened t and dcumented and fr relatives r carers t take a full and active part in cmmunicatin: Ratinale T supprt cmmunicatin / psychlgical well-being / insight int care management f the patient, and t assess fr barriers that have the ptential t prevent clear cmmunicatin Fr example, sme patients may nt use English as their first language r have physical r learning disabilities and may need additinal supprt t enable full engagement in cmmunicatin. Required Behaviur Assess the cmmunicatin status f the relative r carer(s) and: If English is nt the their first language, cnsider the need fr an interpreting service and make it available t them as required If the relative r carer(s) have physical r learning disabilities (e.g. Hearing, visin, speech, learning disabilities, dementia (use f assessment tls), neurlgical cnditins, cnfusin etc) cnsider the need fr additinal supprt and make it available t them as required Cde Achieved either when n supprt is needed t facilitate apprpriate cmmunicatin with the relative r carer(s) when the supprt required is available at this mment in time Cding Cde Variance when yu have identified the need fr supprt t facilitate apprpriate cmmunicatin with relative r carer(s), but it is nt available at this mment in time A cded variance must be accmpanied by a written explanatin n the LCP generic versin 12 Gal Definitins/Data Dictinary Dec 09 Page 9 f 36
GOAL 1.3 The patient is aware that they are dying Gd cmprehensive clear cmmunicatin is pivtal and all decisins leading t a change in care delivery shuld be cmmunicated t the patient where apprpriate.the views f all cncerned must be listened t and dcumented. Ratinale Required Behaviur T ensure that the patient is aware that they are nw thught t be dying and in the last hurs r days f life T ensure that yu as a healthcare prfessinal are aware f the knwledge status f the patient t supprt future cnversatins yu may have (particularly at the bedside) in rder t maintain apprpriate cnfidentiality and respect Yu shuld have a cnversatin with the patient at this mment in time t assess their level f awareness and t explain t them that death is expected in the cming hurs r days. It is imprtant that yu check the understanding f the patient after yu have cmmunicated with them. There may be a very valid reasn fr nt undertaking a cnversatin with the patient at this time, fr example: patient requested nt t be tld bad news patient is alne & yu want t have this cnversatin with a relative r carer present patient is nt well enugh in yur healthcare prfessinal pinin t have this discussin despite being cnscius yu d nt feel able t address this issue at this time If a cnversatin is deemed apprpriate at this time, remember, it can be a difficult cnversatin t have. Yu need t recgnise yur limitatins and seek advice and supprt where apprpriate Cde Achieved if yu have had a cnversatin with the patient at this mment in time, yu have explained that they are deemed t be dying and in the last hurs and days f life and yu are cnfident that the patient is fully aware. Cding Cde Variance If yu have had a cnversatin regarding these issues with the patient at this time, but yu are nt cnfident that the patient is fully aware. Yu did nt have a cnversatin regarding these issues with the patient at this time A cded variance must be accmpanied by a written explanatin n the Cde Uncnscius if yu have nt had a cnversatin with the patient t explain that they are in the last hurs r days f life at this time because the patient is uncnscius. LCP generic versin 12 Gal Definitins/Data Dictinary Dec 09 Page 10 f 36
GOAL 1.4 The relative r carer is aware that the patient is dying Gd cmprehensive clear cmmunicatin is pivtal and all decisins leading t a change in care delivery shuld be cmmunicated t the patient where apprpriate.the views f all cncerned must be listened t and dcumented. Ratinale T ensure that the relative r carer is aware that the patient is nw thught t be dying and in the last hurs r days f life T ensure that yu as a healthcare prfessinal are aware f the knwledge status f the relative r carer t supprt future cnversatins yu may have (particularly at the bedside) in rder t maintain apprpriate cnfidentiality and respect Required Behaviur Yu shuld have a cnversatin with the relative r carer at this mment in time t assess their level f awareness and t explain t them that the patient is expected t die in the cming hurs r days. It is imprtant that yu check the understanding f the relative r carer after yu have cmmunicated with them. There may be a very valid reasn fr nt undertaking a cnversatin with the relative r carer at this time, fr example: The relative r carer althugh available may be physically r psychlgically frail, r elderly themselves and due t yur risk assessment f the situatin yu want t wait t discuss these issues when extended supprt is available yu d nt feel able t address this issue at this time If a cnversatin is deemed apprpriate at this time, remember, it can be a difficult cnversatin t have. Yu need t recgnise yur limitatins and seek advice and supprt where apprpriate Cding Cde Achieved if yu have had a cnversatin with the relative r carer at this mment in time, yu have explained that the patient is deemed t be dying and in the last hurs and days f life and yu are cnfident that the relative r carer is fully aware. Cde Variance If yu have had a cnversatin regarding these issues with the relative r carer at this time, but yu are nt cnfident that they are fully aware. Yu did nt have a cnversatin regarding these issues with the relative r carer at this time A cded variance must be accmpanied by a written explanatin n the LCP generic versin 12 Gal Definitins/Data Dictinary Dec 09 Page 11 f 36
GOAL 1.5 The clinical team have up t date cntact infrmatin fr the relative r carer as dcumented belw It is imprtant when cmmunicating infrmatin f a sensitive nature arund patient s deterirating cnditin / impending death that the apprpriate persn can be cntacted at an apprpriate time Infrmatin that was accurate at any ther time in this episde f care may nt be accurate nw that the patient is thught t be in the last hurs r days f life Ratinale Sme carers may be wrking, elderly r indeed nt want t be cntacted until the fllwing day irrespective f the patient s cnditin Establishing hw a relative r carer wish t be tld f a patient s impending death is als very imprtant In sme situatins the next f kin may nt be the mst apprpriate persn t be cntacted at the time f impending death r a list f peple may be given r mbile numbers may be needed Required Behaviur Irrespective f prir knwledge r dcumentatin the healthcare prfessinal must revisit this issue and have a cnversatin t ensure that cntact details have been revisited t ensure the crrect details are dcumented crrectly Cding Cde Achieved if yu have had a cnversatin with the relative r carer and yu have identified and dcumented; The first & secnd cntact names Apprpriate times & circumstances when this persn(s) shuld be cntacted The cntact infrmatin fr the Next f Kin (NOK) Cde Variance if yu have NOT had this cnversatin and, as a result, updated accurate infrmatin cannt be guaranteed. A cded variance must be accmpanied by a written explanatin n the LCP generic versin 12 Gal Definitins/Data Dictinary Dec 09 Page 12 f 36
GOAL 2 - FACILITIES GOAL 2: The relative / carer has had a full explanatin f the facilities available t them, and a facilities leaflet has been given It is imprtant that relatives r carers are fully infrmed verbally by the healthcare prfessinal and have supprtive written infrmatin t utline the facilities available t them at this time. Remember infrmatin received verbally nly may nt be retained at this sad and challenging time. Ratinale In an inpatient unit this culd include - car parking, public transprt, refreshments, cash machine, pay phne, accmmdatin, chaplaincy supprt, access t a nurse call bell In the patient s wn hme this culd include access details t the district nursing team, palliative care team, ut f hurs services, GP, hme lans, what t d in an emergency, xygen supplies Required Behaviur A cnversatin must take place and written infrmatin be given t the relative r carer t supprt this cnversatin Cde Achieved if yu have had a cnversatin with the relative r carer at this mment in time and given a written infrmatin leaflet t supprt this cnversatin. BOTH f these elements need t be undertaken if this gal is t be achieved. Cding Cde Variance if: Yu have nt had a cnversatin at this mment in time (even if yu have given an infrmatin leaflet) Yu have had a cnversatin at this mment in time, but NOT given an infrmatin leaflet Yu have nt had a cnversatin r given an infrmatin leaflet at this mment in time A cded variance must be accmpanied by a written explanatin n the LCP generic versin 12 Gal Definitins/Data Dictinary Dec 09 Page 13 f 36
GOALS 3.1, 3.2 - SPIRITUALITY GOAL 3.1 Ratinale The patient is given the pprtunity t discuss what is imprtant t them at this time e.g. their wishes, feelings, faith, beliefs, values T ensure that any spiritual need is highlighted and addressed if required nw, at death r after death and any specific needs are dcumented n the LCP t aid and infrm ther healthcare prfessinals/ther persnnel wh may becme invlved in the patient s care Required Behaviur Even if it is knwn that the patient has previusly been asked abut their spiritual beliefs and may indeed have a dcumented frmal religius traditin r spiritual belief n admissin, a cnversatin t identify the patient s present spiritual/religius/cultural needs must be undertaken The needs must be dcumented apprpriately n the LCP. NB If the patient is unable t have this cnversatin with yu, yu may wish t discuss the patient s needs r wishes with the relative r carer. Cde Achieved if yu had a cnversatin with the patient at this mment in time and any religius/spiritual/cultural needs (r their absence) have been identified and dcumented apprpriately. Cding Cde Variance if yu have nt had a cnversatin regarding these issues with the patient (fr example, because they were cnfused, t drwsy etc) A cded variance must be accmpanied by a written explanatin n the Cde Uncnscius if it was impssible t have the cnversatin because yur patient is uncnscius at this mment in time. LCP generic versin 12 Gal Definitins/Data Dictinary Dec 09 Page 14 f 36
GOAL 3.2 Ratinale The relative r carer is given the pprtunity t discuss what is imprtant t them at this time e.g. their wishes, feelings, faith, beliefs, values T ensure that any spiritual need is highlighted and addressed if required nw, at death r after death and any specific needs are dcumented n the LCP t aid and infrm any ther healthcare prfessinals / ther persnnel wh may be invlved in the patient s care. Required Behaviur Irrespective f any prir discussins, it is imprtant t have a direct cnversatin at this time t identify the spiritual/religius r cultural needs f the relative r carer and ffer apprpriate supprt, nw, at the patient s death r after death. The utcme f this cnversatin must be dcumented n the LCP. NB Where the patient has been unable t have a similar cnversatin with yu (gal 3.1), yu may wish t discuss the patient s needs r wishes with the relative r carer Cding Cde Achieved if yu had a cnversatin with the relative r carer at this mment in time and any religius/spiritual/cultural needs (r their absence) have been identified and dcumented apprpriately. Cde Variance if yu have NOT had this cnversatin at this time A cded variance must be accmpanied by a written explanatin n the LCP generic versin 12 Gal Definitins/Data Dictinary Dec 09 Page 15 f 36
GOALS 4.1, 4.2 - MEDICATION GOAL 4.1 The patient has medicatin prescribed n a prn basis fr all f the fllwing 5 symptms which may develp in the last hurs r days f life These 5 main symptms have been recgnised as actual r ptential prblems in the last hurs r days f life Ratinale Anticipatry prescribing will ensure minimal delay in respnding t a symptm if r when it arises. Medicines fr symptm cntrl shuld nly be given when needed, at the right time and just enugh and n mre than is needed t help cntrl the symptm and titrated accrding t individual patient need. As with all clinical guidelines and pathways the LCP aims t supprt but des nt replace clinical judgement and all decisins must me made in the patient s best interest Required Behaviur Anticipatry prescribing will ensure minimal delay in respnding t a symptm if r when it arises. Medicines fr symptm cntrl shuld nly be given when needed, at the right time and just enugh and n mre than is needed t help cntrl the symptm and titrated accrding t individual patient need. Refer t the algrithms at the end f the LCP (develped accrding t yur lcal plicy and prcedure) t underpin prescribing (apprpriate medicatins/dse etc) Prescribe apprpriate PRN medicatin fr all 5 main symptms (whether r nt the patient is displaying these symptms n cmmencement f the LCP) Assess all current medicatin assessed and discntinue any nn essential medicatin Cde Achieved when all f the apprpriate medicatins have been written up accrding t prtcl fr all 5 main symptms that may ccur in the last hurs r days f life Cding Cde Variance when apprpriate medicatins have NOT been written up accrding t prtcl fr all 5 main symptms that may ccur in the last hurs r days f life A cded variance must be accmpanied by a written explanatin n the variance sheet within the LCP LCP generic versin 12 Gal Definitins/Data Dictinary Dec 09 Page 16 f 36
GOAL 4.2 Ratinale Equipment is available fr the patient t supprt a cntinuus subcutaneus infusin (CSCI) f medicatin where required T ensure that equipment supprting cntinuus subcutaneus infusin f medicatin in supprt f symptm management is available where required. Required Behaviur Stp, Think, Assess, and Change yur practice accrdingly. If medicatin is required t be given via a CSCI then btain the apprpriate equipment required & use accrding t lcal plicy and prcedure Cde Achieved if equipment is needed and available at this mment in time t supprt CSCI f medicatin. Cde Variance when equipment is needed but NOT available at this mment in time t supprt CSCI f medicatin. Cding A cded variance must be accmpanied by a written explanatin n the Cde Already in place if equipment fr CSCI is already in prgress at the time the LCP is cmmenced. Cde Nt Required if equipment is nt needed t supprt CSCI medicatin at this mment in time. LCP generic versin 12 Gal Definitins/Data Dictinary Dec 09 Page 17 f 36
GOALS 5.1, 5.2, 5.3 - CURRENT INTERVENTIONS GOAL 5.1 The patient s need fr current interventins has been reviewed by the MDT Ratinale Required Behaviur The LCP generic dcument guides and enables healthcare prfessinals t fcus n care in the last hurs r days f life. This prvides high quality care tailred t the patient s individual needs, when their death is expected: T avid invasive, futile, ptentially painful and unnecessary prcedures / interventins being carried ut when n clear benefit can be gained. All decisins taken regarding interventins (ie t be cntinued, discntinued r cmmenced) must be cnsidered t be in the patient s best interest at this mment in time. As with all clinical guidelines and pathways the LCP aims t supprt but des nt replace clinical judgement. Stp, Think, Assess, and Change yur practice accrdingly Assess the patient s status regarding the fllwing interventins: 5a Rutine bld tests 5b Intravenus antibitics 5c Bld glucse mnitring 5d Recrding f rutine vital signs 5e Oxygen therapy Cntinue, discntinue r cmmence as apprpriate in the patient s best interest at this mment in time Cde Achieved when each f the specific interventins abve (5a, 5b, 5c, 5d, 5e) have been assessed and an utcme is clearly recrded n the LCP. Cding Cde Variance if any f the specific interventins abve (5a, 5b, 5c, 5d, 5e) have NOT been assessed and/r an utcme is NOT recrded n the LCP. A cded variance must be accmpanied by a written explanatin n the LCP generic versin 12 Gal Definitins/Data Dictinary Dec 09 Page 18 f 36
GOAL 5.2 Ratinale The patient has a D Nt Attempt Cardipulmnary Resuscitatin Order in place The LCP generic dcument guides and enables healthcare prfessinals t fcus n care in the last hurs r days f life. This prvides high quality care tailred t the patient s individual needs, when their death is expected. T avid invasive, futile, ptentially painful and unnecessary cardi pulmnary resuscitatins prcedures / interventins being carried ut when n clear benefit can be gained. All interventins must be cnsidered t be in the patient s best interest. Required Behaviur As with all clinical guidelines and pathways the LCP aims t supprt but des nt replace clinical judgement and all decisins must be made in the patient s best interest. Stp, Think, Assess, and Change yur practice accrdingly Assess the cardipulmnary resuscitatin status f the patient Cde Achieved when a nt fr DNA CPR decisin has been made and apprpriately dcumented accrding t plicy/prcedure. Cding Cde Variance when there is n clear decisin in place at this mment in time when a decisin has been made t attempt CPR when deemed apprpriate where n dcumentatin exists regarding the patient s CPR status at this mment in time A cded variance must be accmpanied by a written explanatin n the LCP generic versin 12 Gal Definitins/Data Dictinary Dec 09 Page 19 f 36
GOAL 5.3 Implantable Cardiverter Defibrillatr (ICD) is deactivated Ratinale Cntinuing cardiac defibrillatin until the pint f death can be distressing and cnfusing t family/carers when n clear benefit can be gained. All interventins must be cnsidered t be in the patient s best interest. Required Behaviur As with all clinical guidelines and pathways the LCP aims t supprt but des nt replace clinical judgement. Stp, Think, Assess, and Change yur practice accrdingly Refer t and fllw lcal plicy and prcedures fr deactivatin Cntact the patient s Cardilgist Give infrmatin leaflet t patient/carer wherever apprpriate in supprt f best practice Cding Cde Achieved when the ICD has been deactivated at this mment in time accrding t plicy and prcedure. Cde Variance where an ICD is in place but has nt been deactivated a plan has been agreed fr deactivatin but has nt ccurred at this mment in time A cded variance must be accmpanied by a written explanatin n the Cde n ICD in place where the patient des nt have an ICD in place LCP generic versin 12 Gal Definitins/Data Dictinary Dec 09 Page 20 f 36
GOAL 6 - NUTRITION GOAL 6: The need fr clinically assisted ( artificial ) nutritin is reviewed by the MDT The LCP des nt preclude the use f clinically assisted (artificial) nutritin. All clinical decisins must be made in the patient s best interest. Ratinale A blanket plicy fr giving clinically assisted (artificial) nutritin r fr nt giving clinically assisted (artificial) nutritin, is ethically indefensible and in the case f patients lacking capacity prhibited under the Mental Capacity Act (2005). A full assessment f the patient s need fr this interventin is required and cmmunicatin with the patient, where pssible, and relative r carer is essential at this mment in time. Fr many patients the use f clinically assisted (artificial) nutritin will nt be required but again this decisin must be made in the patient s best interest. A reduced need fr fd is part f the nrmal dying prcess. Required Behaviur As with all clinical guidelines and pathways the LCP aims t supprt but des nt replace clinical judgement and all decisins must be made in the patient s best interest. The MDT must Stp, Think, Assess, and Change practice accrdingly The patient shuld be supprted t take fd by muth fr as lng as tlerated. An assessment f the patient s need fr clinically assisted (artificial) nutritin shuld be undertaken The utcme f decisins made must be dcumented n the LCP Cding Cde Achieved when the MDT has reviewed the need fr the use f clinically assisted (artificial) nutritin, the utcme is clearly cmmunicated with the patient (where pssible) and with the relative r carer, and dcumented n the LCP at this mment in time. Cde Variance when the MDT has NOT reviewed the need fr the use f clinically assisted (artificial) nutritin A cded variance must be accmpanied by a written explanatin n the LCP generic versin 12 Gal Definitins/Data Dictinary Dec 09 Page 21 f 36
GOAL 7 - HYDRATION GOAL 7: The need fr clinically assisted ( artificial ) hydratin is reviewed by the MDT The LCP des nt preclude the use f clinically assisted (artificial) hydratin. All clinical decisins must be made in the patient s best interest. Ratinale A blanket plicy fr giving clinically assisted (artificial) hydratin r fr nt giving clinically assisted (artificial) hydratin, is ethically indefensible and in the case f patients lacking capacity prhibited under the Mental Capacity Act (2005). A full assessment f the patient s need fr this interventin is required and cmmunicatin with the patient, where pssible, and relative r carer is essential at this mment in time. Fr many patients the use f clinically assisted (artificial) hydratin will nt be required but again this decisin must be made in the patient s best interest. A reduced need fr fluids is part f the nrmal dying prcess. Required Behaviur As with all clinical guidelines and pathways the LCP aims t supprt but des nt replace clinical judgement and all decisins must be made in the patient s best interest. The MDT must Stp, Think, Assess, and Change practice accrdingly The patient shuld be supprted t take fluids by muth fr as lng as tlerated. The utcme f decisins made must be dcumented n the LCP. Cding Cde Achieved when the MDT has reviewed the need fr the use f clinically assisted (artificial) hydratin, the utcme is clearly cmmunicated with the patient (where pssible) and with the relative r carer, and dcumented n the LCP at this mment in time. Cde Variance when the MDT has NOT reviewed the need fr the use f clinically assisted (artificial) hydratin A cded variance must be accmpanied by a written explanatin n the LCP generic versin 12 Gal Definitins/Data Dictinary Dec 09 Page 22 f 36
GOAL 8 - SKIN CARE GOAL 8: The patient s skin integrity is assessed Ratinale The aim is t prevent pressure ulcers r further deteriratin if a pressure ulcer is present. T develp a plan f care regarding skin integrity/skin care fr this mment in time and ensure that the clinical team are fully aware f the plan Required Behaviur As with all clinical guidelines and pathways the LCP aims t supprt but des nt replace clinical judgment and all decisins must be made in the patient s best interest. Stp, Think, Assess, and Change yur practice accrdingly. Use a recgnised risk assessment tl e.g. Waterlw / Braden t supprt clinical judgement. Determine the frequency f repsitining thrugh the inspectin f the patient s skin, accrding t the patient s individual needs Cnsider the use f special aids (mattress / bed) Recrd the plan f care n the initial assessment MDT sheet Cde Achieved when skin integrity has been fully assessed & plan dcumented n the LCP at this mment in time. Cding Cde Variance when an assessment f skin integrity and assciated plan is NOT undertaken and/r dcumented at this mment in time. A cded variance must be accmpanied by a written explanatin n the LCP generic versin 12 Gal Definitins/Data Dictinary Dec 09 Page 23 f 36
GOAL 9.1, 9.2, 9.3, 9.4 - EXPLANATION OF THE PLAN OF CARE GOAL 9.1 Full explanatin f the current plan n care (LCP) is given t the patient Ratinale It is imprtant t ensure that the patient understands fully the aims f the current plan f care (LCP) and that fcus is nw n ensuring cmfrt during the last hurs r days f life and is supprted by best practice. It is imprtant nt t assume understanding but t check what the patient has understd. Required Behaviur Irrespective f any prir discussins undertake a direct cnversatin at this time t ensure the patient understands hw care will be delivered Seek apprpriate supprt fr any barriers t cmmunicatin Cde Achieved when yu have had a cnversatin and yu are cnfident that the patient fully understands the current plan f care (LCP). Cding Cde Variance when yu have NOT had a cnversatin yu have had a cnversatin but yu are nt cnfident that the patient fully understands the current plan f care A cded variance must be accmpanied by a written explanatin n the Cde Uncnscius if it is impssible t have the cnversatin because the patient is uncnscius at this mment in time. This des nt mean yu will stp speaking with yur patient and cntinue t explain the plan f care, but yu cannt be sure the patient fully understands. LCP generic versin 12 Gal Definitins/Data Dictinary Dec 09 Page 24 f 36
GOAL 9.2 Ratinale Full explanatin f the current plan n care (LCP) is given t the relative r carer It is imprtant t ensure that the relative r carer understands fully the aims f the current plan f care (LCP) and that fcus is nw n ensuring cmfrt during the last hurs r days f life and is supprted by best practice. It is imprtant nt t assume understanding but t check what the relative r carer has understd. Required Behaviur Irrespective f any prir discussins undertake a direct cnversatin at this time t ensure the relative r carer understands hw care will be delivered. List the healthcare prfessinals & relatives r carers wh were present when this cnversatin tk place Seek apprpriate supprt fr any barriers t cmmunicatin. Access t age apprpriate advice and infrmatin t supprt children/adlescents at this time shuld be made available. Cde Achieved when yu have had a cnversatin, yu are cnfident the relative r carer fully understands the plan f care AND the infrmatin sheet at the frnt f the LCP has been given t the relative r carer t supprt this cnversatin. Cding Cde Variance when yu have NOT had a cnversatin yu have had a cnversatin but yu are nt cnfident that the relative r carer fully understands the current plan f care A cded variance must be accmpanied by a written explanatin n the LCP generic versin 12 Gal Definitins/Data Dictinary Dec 09 Page 25 f 36
GOAL 9.3 Ratinale The LCP Cping with dying leaflet r equivalent is given t the relative r carer This leaflet supprts a cnversatin that has taken place with the relative r carer t explain the changes which may ccur ver the cming hurs r days s that the relative r carer understands these changes and feels supprted. Required Behaviur Give the cping with dying leaflet t the relative r carer and ffer supprt at this mment in time. Indicate that if further questins, fears r cncerns d arise a member f the team will be pleased t listen and ffer supprt r explanatin & answer any questins. Cde Achieved when yu have given the cping with dying leaflet t the relative r carer. Cding Cde Variance when yu have NOT given the cping with dying leaflet t the relative r carer. A cded variance must be accmpanied by a written explanatin n the LCP generic versin 12 Gal Definitins/Data Dictinary Dec 09 Page 26 f 36
GOAL 9.4 The patient s primary health care team / GP Practice is ntified that the patient is dying The primary health care team shuld always be kept infrmed f the patient s cnditin as the patient is always registered under their care. They need t knw that the fcus f care has changed and an LCP is in prgress because ther members f the family may be knwn t the practice and may seek supprt. Ratinale The GP r ther member f the primary healthcare team may want t visit the patient r carer. In the cmmunity setting remember just because the GP r District Nurse may already be aware that the patient is dying there are ther staff invlved in this patient s care wh may need t be cntacted. e.g. receptinist, Palliative care team, physitherapist, OT care agency, chaplaincy team, Marie Curie Nurse, Out f Hurs Service, pharmacist. Required Behaviur Cntact the primary health care team and ensure all apprpriate persnnel are ntified f the current diagnsis f dying and plan f care (LCP). In the in patient unit it wuld be apprpriate t cntact the GP practice - have a cnversatin where pssible r leave a message r secure fax ut f hurs t infrm the practice f the current change in the plan f care. In the cmmunity setting (patient s wn hme / residential placement) where care is driven by the District Nurse & GP it is imprtant t ensure that all ther members f the team internal and external are aware f the current change in the plan f care. Cde Achieved when yu have ntified the primary healthcare team / GP practice. Cding Cde Variance when yu have NOT ntified the primary healthcare team / GP practice A cded variance must be accmpanied by a written explanatin n the LCP generic versin 12 Gal Definitins/Data Dictinary Dec 09 Page 27 f 36
SECTION 2 ONGOING ASSESSMENT In the nging assessment sectin it is the cnditin f the patient that is assessed (i.e. whether the patient is cmfrtable against a series f specific gals f care). In patient care setting (hspital, hspice, care hme, cmmunity hspital any lcatin with 24hur trained nursing care available) The frequency f any assessments r review f a patient in the last hurs r days f life depend n the individual needs f the patient and /r relative r carer. Hwever The patient must be frmally assessed and each frmal assessment dcumented every 4 hurs at the times indicated n the LCP dcument each assessment is fr a mment in time Fr Example; If yu are making an assessment at 1200hrs fr each gal f care n the nging assessment yu need t assess the patient at that mment in time this is NOT an assessment ver the 4 hur perid since the last frmal assessment at 0800 hrs Yu may have reviewed the patient n a number f ccasins since the last frmal assessment at 0800hrs there may indeed have been a number f variances (exceptin reprting) in care since the last frmal assessment dcumented n the variance sheet. Variance is nt a negative prcess but demnstrates the individual nature f a patient s cnditin based n their particular needs, yur clinical judgement and the needs f the relative r carer. Cmmunity care setting (Patient s wn hme / residential placement any lcatin where 24hr trained nursing care is nt available and care is driven by the GP and District nursing service) The frequency f any assessments r review f a patient in the last hurs r days f life depend n the individual needs f the patient and /r relative r carer. Hwever The patient must be frmally assessed and each frmal assessment dcumented each time a healthcare prfessinal visits the patient (per visit) each assessment is fr a mment in time and the date and time f the visit dcumented n the LCP LCP generic versin 12 Gal Definitins/Data Dictinary Dec 09 Page 28 f 36
Fr Example; If yu are visiting and making an assessment at 1000hrs fr each gal f care n the nging assessment yu need t assess the patient at that mment in time this is NOT an assessment ver the perid since the last frmal assessment was undertaken. The true stry f yur patient s cnditin may be reflected in the variance sectin f the LCP Variance is nt a negative prcess but demnstrates the individual nature f a patient s cnditin based n their particular needs, yur clinical judgement and the needs f the relative r carer. All lcatins f care If yu make an assessment against a gal and the gal is achieved then recrd A fr Achieved n the LCP If fr any reasn there is a variance against a gal recrd a V fr variance n the LCP then recrd the what variance ccurred and why (what was the issue), what actin did yu take (what did yu d abut the issue), and the utcme f actins (what was the slutin). A full multidisciplinary team (MDT) reassessment & review f the current plan f care shuld be triggered when 1 r mre f the fllwing apply: Imprved cnscius level, functinal ability, ral intake, mbility, ability t perfrm self-care Cncerns expressed regarding management plan frm either patient, relative r carer r team member It is 3 days since the last full multidisciplinary team (MDT) assessment Always remember that the Specialist Palliative Care Team are there fr advice and supprt, especially if: Symptm cntrl is difficult and/r if there are difficult cmmunicatin issues r yu need advice r supprt regarding yur care delivery supprted by the LCP LCP generic versin 12 Gal Definitins/Data Dictinary Dec 09 Page 29 f 36
SECTION 3 CARE AFTER DEATH Gal 10 PATIENT CARE / DIGNITY GOAL 10: Last ffices are undertaken accrding t plicy and prcedure Ratinale The patient is treated with respect and dignity whilst last ffices are undertaken accrding t lcal plicy and prcedure. All specific religius/ spiritual / cultural needs shuld be cnsidered at this time. Treat the bdy with respect and dignity in line with any apprpriate rituals and r belief systems. Lcal plicy regarding the undertaking f last ffices must be fllwed. Required Behaviur Universal precautins & lcal plicy and prcedures including infectin risk adhered t. Any spiritual, religius, cultural rituals / needs f the patient / relative r carer must be respected. Organisatinal plicy fllwed fr the management f ICD s, where apprpriate. Organisatinal plicy fllwed fr the management & strage f patient s valuables and belngings. In the cmmunity setting (patient s wn hme / residential hme) it may be that specific guidance needs t be given t the relative r care n what t d in respect f the management f the deceased bdy. Cde Achieved if yu have cmpleted last ffices accrding t lcal plicy and prcedure and yu have adhered t spiritual, religius, cultural rituals / needs f the patient / relative r carer Cding Cde Variance if fr any reasn yu have NOT cmpleted last ffices accrding t lcal plicy and prcedure and yu have NOT adhered t spiritual, religius, cultural rituals / needs f the patient / relative r carer A cded variance must be accmpanied by a written explanatin n the LCP generic versin 12 Gal Definitins/Data Dictinary Dec 09 Page 30 f 36