A Prvincial System Design Framewrk A Primer n Pssible Cmpnents Of Ontari s Hspice Palliative Care System (fr cnsideratin when develping reginal systems f hspice palliative care) September 2010 Prepared by Ontari s Prvincial End f Life Care Netwrk Endrsed by Quality Hspice Palliative Care Calitin f Ontari Steering Cmmittee
Acknwledgements This reprt was prepared by Beth Lambie, Directr f the End f Life Care Netwrk f Erie St. Clair assisted by Elizabeth Lusk, Knwledge Brker fr the Senirs Health Research Transfer Netwrk (SHRTN) End f Life Care Cmmunity f Practice, n behalf f the System Design Prject Wrking Grup f the Prvincial End f Life Care Netwrk (PEOLCN). The System Design Prject Wrking Grup includes: Paul Cavanagh Vice Chair Prvincial End- f Life Care Netwrk Directr, Suth West End-f-Life Care Netwrk Julie Darnay C-Chair Prvincial End-f-Life Care Netwrk Directr, Hamiltn Niagara Haldimand Brant (HNHB) Hspice Palliative Care Netwrk Maggie Gerge Secretary Prvincial End-f-Life Care Netwrk Directr, Suth East End-f-Life Care Netwrk Beth Lambie Directr, Erie St.Clair End-f-Life Care Netwrk Elizabeth Lusk Senirs Health Research Transfer Netwrk (SHRTN) Knwledge Brker Andrea Martin C-Chair Prvincial End-f-Life Care Netwrk Directr, Waterl Wellingtn Hspice Palliative Care Netwrk Cate Rt Treasurer, Prvincial End-f-Life Care Netwrk Executive Directr, Nrth Simce Muskka Palliative Care Netwrk Special thanks t members f the Erie St. Clair End f Life Care Netwrk (ESC EOLCN). The reprt presented here is based n the System Design Framewrk develped by the members f the ESC EOLCN ver the curse f many mnths (1). This reprt acknwledges the cllective wisdm f the many members f the reginal Netwrks. The Netwrks are made up f individuals and rganizatins many f whm are members f The Hspice Assciatin f Ontari and / r the Ontari Palliative Care Assciatin as well as being invlved with Cancer Care Ontari, Ontari Hspital Assciatin and numerus ther assciatins and rganizatins. Additinally, the Netwrks and the Palliative Pain and Symptm Management Cnsultatin Prgrams have a symbitic advisry relatinship. As such, significant cllective wisdm is brught t bear n any develpment prcesses undertaken by the Reginal Netwrks and the Prvincial End-f-Life Care Netwrk (PEOLCN). Revisins and Editing Thanks t Siu Mee Cheng (Executive Directr Trnt Central Palliative Care Netwrk) fr cntent related t the Integratin realm. Thanks t Julie Jhnstn (Crdinatr Palliative Pain and Symptm Management Prgram Suthwestern Ontari -Serving Erie St. Clair and Suthwest Regins) fr editing and frmatting. Limitatins / Scpe f the Reprt This reprt is narrwly fcused n System Design. It des nt prvide an extensive preamble f infrmatin relating t: definitins, mdels f care, imprtance f Hspice Palliative Care (HPC), nr des it seek t review all aspects f HPC service delivery. Key cnsideratins are listed but nt described r explained. Many issues are intentinally nt addressed, in the interest f presenting a framewrk that is specific t system design. The initial fcus f this wrk is n develping a Reginal System Design Framewrk with prvincial cnsistency in apprach and intent. The reginal systems wrk tgether t frm the prvincial system. Significant synergies can be realized as we wrk tgether at a prvincial level. Previus Wrk Much previus wrk is acknwledged; wrk which infrms this reprt and prvides the necessary backdrp f knwledge and infrmatin that allws us t mve frward. Of particular imprtance is the Canadian Hspice Palliative Care Assciatin (CHPCA) Mdel t Guide Hspice Palliative Care (17). The values and guiding principles underpin every aspect f this framewrk. The assumptins and descriptins, dmains f issues etc. articulated in the CHPCA Mdel are used as a fundatin fr this system design framewrk. The reprt titled Review f Fundatinal Cncepts Relating t Hspice Palliative Care Service Delivery (24) prvides backgrund infrmatin abut hw palliative care is delivered. - 1 -
System Design Framewrk Develpment Prcess The prcess fr develping this Framewrk has taken place ver 14 mnths and has invlved much cnsultatin and many iteratins. Frmal cnsensus arund this framewrk was reached with the Prvincial End-f-Life Care Netwrk in June 2010 and with the Quality Hspice Palliative Care Calitin f Ontari in July 2010. Backgrund relating t the develpment f this Framewrk is summarized belw: Purpse and Scpe f this Reprt - This System Design Framewrk lists and categrizes elements t cnsider when develping reginal systems f hspice palliative care. It prvides us with a way t further rganize ur thinking and ur wrk as we develp reginal systems f care. End-f-Life Care Netwrk Rle Related t System Design- System design is ne f the designated rles fr Ontari s Reginal End f Life Care/Hspice Palliative Care Netwrks (EOLCN/HPCN) (2). A strategic pririty f the Prvincial End f Life Care Netwrk (PEOLCN) is t create a system design framewrk dcument (3). The missin f the PEOLCN is t champin an integrated quality f life strategy f end f life care fr all individuals, thrugh cllabratin and best practice (4). A System Design Framewrk is a key step in advancing this missin. Need fr Systematic Apprach Many Hspice Palliative Care/End-f-Life Care Netwrks have prduced reprts relating t HPC service delivery in their respective regins within the cntext f system design. (5) (6) (7) (8) (9) (10) (11) (12). Every regin is lking at many f the same elements. It thus became evident that the next step invlved creatin f a systematic apprach t guide nging develpment f reginal HPC systems acrss Ontari. Wrking Grup - A wrking grup f the PEOLCN, in cncert with The Senirs Health Research Transfer Netwrk (SHRTN) End f Life Care Cmmunity f Practice (CP) was frmed t explre the creatin f this systematic apprach (Refer t Acknwledgement page fr listing f members). Surce Dcument Review The wrking grup reviewed many surce dcuments with many cmmn elements f an integrated system emerging frm this review (refer t listing f surce dcuments at end f reprt). It became clear that there is a high level f cnsensus arund what elements cntribute t an integrated system and many listings and descriptins f these elements have been cmpiled (13) (14) (15). One regin used a cmpsite listing f key elements t review current status f its reginal system (5). The utility f this listing was limited because it was nt srted r categrized in a practical way that facilitated a functinal review. Srting / Categrizing / Understanding Linkages - Since there was already much cnsensus n key elements, the task f this wrking grup became nt s much identifying new elements, but building n previus wrk by srting, categrizing and linking these elements int a functinal, practical framewrk that wuld facilitate nt nly descriptin f the current system but develpment f a new system. Plan / D / Study / Act Cycles -This Framewrk has been widely vetted and revised ver the curse f a 16 mnth perid culminating in September 2010. Several iteratins f a system design framewrk were initially reviewed by the PEOLCN wrking grup. The thinking f this wrking grup calesced arund wrk dne in the Erie St. Clair regin by the End-f-Life Care Netwrk (ESC EOLCN) (1).A summary versin f the ESC EOLCN wrk was presented and revised at a meeting f the Prvincial EOLCN (Spring 2009). The ESC EOLCN wrk was then redefined within a prvincial cntext and was presented at the prvincial wrkshp Imprving the Quality f Hspice Palliative Care Acrss Ontari (June 2009), as a wrk in prgress, fr further review. The dcument was distributed t all attendees f that event and then mre widely distributed t palliative care netwrk members and prviders acrss the prvince. Feedback was incrprated int a revised dcument. Results frm a fllw-up survey (February 2010) distributed t the participants f the wrkshp Imprving the Quality f Hspice Palliative Care Acrss Ontari, validated the realms and pillars f this framewrk. Further discussin abut this framewrk tk place at the PEOLCN table in April 2010 and revisins frm several HPC/EOLC netwrks were incrprated between April and June 2010. That revised dcument was apprved by the PEOLCN (June 2010) and by the Quality Hspice Palliative Care Calitin f Ontari (July 2010). Final revisins were incrprated fllwing the September 2010 meeting f the Steering Cmmittee f Quality Hspice Palliative Care calitin f Ontari. - 2 -
Cntents Executive Summary... 4 Intrductin... 7 System Design Realms Care Setting and Services... 10 Prgrams within Care Settings and Services... 12 Integratin / Linkages... 14 Human Capital... 16 Accuntability... 17 Plicies, Guidelines and Funding... 19 Next Steps... 21 Wrks Cited... 21 Appendix 1... 22 Appendix 2... 28 Appendix 3... 29 Appendix 4... 31 Appendix 5... 32 Surce Dcument References... 33-3 -
Executive Summary This System Design Framewrk lists and categrizes the basic elements f an integrated reginal hspice palliative care system fr Ontari. The categrizatin acknwledges the multi-sectr nature f Hspice Palliative Care (HPC) service delivery. The listed elements serve as a practical template against which the current state can be cmpared. This cmparisn will identify gaps and issues which will frm the fundatin fr the planning and building f crss sectr reginal Hspice Palliative Care Systems/Prgrams. This reprt is narrwly fcused n System Design. It des nt prvide extensive preamble infrmatin relating t definitins, mdels f care, imprtance f Hspice Palliative Care, nr des it seek t review all aspects f service delivery. Key cnsideratins are listed but nt described r explained in detail. Many issues are intentinally nt addressed in the interests f presenting a framewrk that is specific t system design. Intrductin Each reginal system f Hspice Palliative Care in Ontari is really a system f systems. Health care in Ontari is delivered by sectrs and by independent service prviders, each with its wn Bard f Directrs, individual mandate, peratinal imperatives and strategic directins. Fr mst HPC prviders, Hspice Palliative Care is but ne f many services they deliver. This primer n system design framewrk elements seeks t articulate and categrize key cnsideratins related t develping a Reginal System f Hspice Palliative Care within the cntext f ur system f systems (1). T mve frm ur current system f sectr-specific service prvisin t a true reginal system f palliative care service prvisin requires that: 1. A full cntinuum f care settings and services is in place; 2. In each care setting where patients die, there is a clearly defined Palliative Care Prgram; 3. Sectrs and services are linked by cmmn practice, prcesses, structures and educatin; 4. Adequate numbers f trained prfessinals are available; 5. System level accuntability is clearly defined and cmmunicated; and 6. Funding mdels, guidelines and plicy directins supprt an integrated system. These six requirements/standards are the fundatinal pillars arund which the system design framewrk is cnstructed Develping a reginal system f Hspice Palliative Care, within Ontari s cmplex healthcare envirnment requires a system design framewrk that is multifactral and multidimensinal. Such a framewrk simultaneusly fcuses attentin and activity n several realms f system develpment. The 6 realms cited belw flw frm the 6 fundatinal pillars cited abve. 1. Care Settings and Services: A full cntinuum f care settings and services is in place We must understand what the cmpnent parts f a Service Delivery System are befre we can address system develpment. Patients requiring hspice palliative care have fluctuating and cmplex needs which change ver time. Rarely can these needs be cmpletely met by any ne facility, ne service r ne prvider. Many care settings and services are required. This system design framewrk lists key sectrs and services that tgether make up a Reginal System. These cmpnent parts f an integrated hspice palliative care system include: 24/7 Care Settings (and the HPC specialist cnsultatin services serving thse settings) Ambulatry Care / Day Prgrams Cmmunity Supprt Services / Prgrams - 4 -
2. Prgrams within Care Settings and Services: In each care setting where patients die, there is a clearly defined Palliative Care Prgram. Each care setting and service cntributes t the system as a whle. Therefre, as we are develping a whle system attentin must be given t key elements f service delivery within each f the cmpnent parts. The system as a whle is nly as strng as the weakest f its cmpnent parts. Basic elements indicating that a hspice palliative care prgram exists within a specific care setting include: Clearly articulated mdel f care Clear prcesses t access specialist level expertise Key rganizatinal cntact Admissin Criteria 3. Integratin / Linkages: Sectrs and services are linked by cmmn practice, prcesses, structures and educatin: Transitins between sectrs are imprtant t patients and families. The patients and families perspective f the crdinatin, seamlessness and integratin f ur HPC care system, is directly prprtinal t ur success (r lack theref) at integratin and linkages between / amng sectrs. Integratin essentials include: Cmmn practice and prcesses Cllabrative structures Cmmn understanding f service delivery mdels System level data cllectin and evaluatin Cnnectins with brad system, f health care Regin-wide strategies and blueprints Prvincial level leadership and cnsistency 4. Human Resurces: Adequate numbers f trained prfessinals are available Cmpassinate, skilled peple are at the very cre f Hspice Palliative Care. Equipment is imprtant, medicatin is vital, but withut the peple the right care des nt reach the patient. Shrtages f HPC persnnel are reprtedly endemic acrss Ontari. Key cnsideratins, related t human capital, include: Team cmpsitin - listing f Key HPC prfessinals Delineatin f educatin and training at primary and specialist levels fr varius prfessinal categries (undergraduate training requirements fr all prviders; pst-graduate curses, in-service training) Develpment f ppulatin based guidelines Enhancement f innvative care mdels 5. System Accuntability: System level accuntability is clearly defined and cmmunicated If we are t develp a functining crss sectr Reginal System f Hspice Palliative Care we need t develp reginal HPC prgram accuntability mdels that supprt and advance the care f patients acrss sectrs, while aligning with peratinal accuntabilities within each sectr/service. Key cnsideratins related t system accuntability include defining: Key functins f system level accuntability Key mechanisms that wuld facilitate system level accuntability Fundamental principles that advance system level accuntability 6. Plicies, Guidelines and Funding: Funding mdels, guidelines and plicy directins supprt an integrated system Plicies, guidelines and funding directly impact nt nly patient care but system design and develpment. Awareness f these issues is necessary t alert the Lcal Health Integratin Netwrk (LHIN) and thers t significant issues and t create temprary wrk arund slutins t ffset the negative impact f these issues n patient care. Issues that wuld benefit frm prvincial level strategies / guidelines / initiatives t advance system level HPC delivery include: Cnsistent and adequate funding Full scpe pprtunities Ppulatin based planning guidelines Standardized accessible data sets with perfrmance data linked t quality indicatrs - 5 -
Dcument Overview The dcument which fllws includes: Intrductin The intrductin establishes cntext thrugh: a brief cmment n the health care system in Ontari an verview explanatin f the system design framewrk descriptin f purpse f the framewrk listing f 6 pillars arund which the framewrk is frmed verview f framewrk summary schematic f the framewrk a review f the definitin f Hspice Palliative Care. Bdy f the dcument The main bdy f this dcument fcuses n the six realms and six pillars f the system design framewrk. Fr each realm: the crrespnding pillar/ standard is articulated ; ratinale fr inclusin is highlighted; limitatins are cited; key search questins are psed the search questins are answered with a listing f key cnsideratins; and practical cmments relating t the use f the listing when cnducting a reginal review are included. Next Steps Next step are very briefly articulated. A System Level Framewrk enhances ur ability t plan and review hw each part f the system impacts the system as a whle. This Framewrk will serve as a tuchstne - a reference pint - frm which t evaluate current status and prgress twards an integrated crss sectr system f Hspice Palliative Care Delivery in Ontari. Appendices Appendices expand n specific elements f the System Design Framewrk. Hspice Palliative Care defined -Hspice palliative care is a hlistic, interdisciplinary apprach t care that aims t relieve physical, psychscial, and spiritual suffering assciated with living with a prgressive life-threatening illness. It can be prvided at hme, in hspitals, nursing hmes r free-standing hspices. It is mst effectively delivered by an interdisciplinary team f health care prviders. It is mre than end-f-life care. In fact, hspice palliative care can (and ften shuld) be initiated at the same time that a patient is receiving treatment t mdify his r her disease(s). As such, it can be seen as a key element f any chrnic disease management strategy. It assists patients t make infrmed chices by discussing disease status, prgnsis, etilgy f symptms, assessment f risks, and benefits f treatment chices. (Cavanagh P. (2009) adapted frm the CHPCA Mdel t Guide Hspice Palliative Care (2002) and the Suth West End-f-Life Care Netwrk 06-07 Annual Reprt.) - 6 -
Intrductin Each reginal system f Hspice Palliative Care (HPC) in Ontari is really a system f systems. Health care in Ontari is delivered by sectrs and by independent service prviders, each with its wn Bard f Directrs, individual mandate, peratinal imperatives and strategic directins. Fr mst HPC prviders, Hspice Palliative Care is but ne f many services they deliver. The system design framewrk, described here, presents key cnsideratins related t develping a Reginal System f Hspice Palliative Care within the cntext f ur system f systems (1). The reginal system f Hspice Palliative Care in Ontari is really a system f systems Purpse f the System Design Framewrk This System Design Framewrk is a tl fr preliminary system level evaluatin and develpment. The framewrk cites and categrizes elements f an integrated system f Hspice Palliative Care. It lists details f a desired future state. Current status can be evaluated relative t this. A gap analysis will emerge and recmmendatins and actin plans can be rganized arund the framewrk categries/realms. The categrizatin (by realm) is designed t facilitate a high level l check listing prcess f review which may lead t clser evaluatin f specific elements. Figure 1 illustrates this functin. This Framewrk was used in a preliminary inventry f Prvincial Hspice Palliative Care (16). System Design Framewrk Pillars T mve frm ur current system f sectr-specific service prvisin t a true reginal system f hspice palliative care service prvisin requires that: 1. A full cntinuum f care settings and serviceses is in place; 2. In each care setting where patients die, theree is a clearly defined Palliative Care Prgram; 3. Sectrs and services are linked by cmmn practice, prcesses, structures and educatin; 4. Adequate numbers f trained prfessinals are available; 5. System level accuntability is clearly definedd and cmmunicated; and 6. Funding mdels, guidelines and plicy directins supprt an integrated system (1). These six requirements/ standards are the fundatinal pillars arund which the system design framewrk is cnstructed. System Design Framewrk Overview Develping a reginal system f Hspice Palliative Care, within Ontari s cmplex healthcare envirnment requires a system design framewrk that is multifactral and multidimensinal. Such a framewrk simultaneusly fcuses attentin and activity n several realms f system develpment. The system design framewrk presented here, embraces six realms f system develpment. These six realms flw frm the six fundatinal pillars cited abve. These realms are: Care settings and Services Prgrams within care settings and services Integratin / Linkages Human Resurces System Accuntability Plicies, Guidelines and Funding - 7 -
Figure 2 illustrates these six realms f System Design and System Develpment Figure 2 In additin t depicting the realms f system design / develpment, Figure 1 attempts t illustrate the fllwing key cnsideratins f HPC system design and system develpment: Centrality f patient and family, Prvisin f direct clinical care surrunding the patient and family - A system design framewrk des nt directly address clinical practice. Hwever the fundamental purpse f the framewrk is t enhance the milieu in which direct patient care is prvided, thereby enhancing care fr the patient and family. Much excellent wrk is available t guide prcesses related t direct patient care, including the Canadian Hspice Palliative Care Assciatin (CHPCA) Mdel t Guide Hspice Palliative Care. (17) Dynamic nature f system design and system develpment - the arrws indicate that this framewrk is nt intended t serve as a tl fr static descriptin but rather is intended t prvide a template fr actin. Interrelatedness f all realms The relatinship between each realm is nt linear. All realms cnverge in the centre and simultaneus fcus and activity is required in all 6 realms. Fundatinal values and guiding principles articulated in the CHPCA Mdel (17) underpin all aspects f this framewrk. In the reprt which fllws, each f the 6 realms is described in mre detail. Fr each realm: the crrespnding pillar/ standard is articulated, ratinale fr inclusin is highlighted; limitatins are cited; key search questins are psed the search questin are answered with a listing f key cnsideratins; and practical cmments relating t the use f the listing when cnducting a reginal review are included. Appendices expand n specific elements f the System Design Framewrk. - 8 -
Hspice Palliative Care Defined In cnceptualizing the system design framewrk, we anchred ur thinking in the CHPCA Mdel t Guide Hspice Palliative Care (2002); a definitin f hspice palliative care with natinal cnsensus (17). Hspice palliative care (HPC) aims t relieve suffering and imprve the quality f living and dying. It strives t help patients and families: address physical, psychlgical, scial, spiritual and practical issues, and their assciated expectatins, needs, hpes and fears prepare fr and manage self-determined life clsure and the dying prcess cpe with lss and grief during the illness and bereavement. HPC aims t: treat all active issues prevent new issues frm ccurring prmte pprtunities fr meaningful and valuable experiences, persnal and spiritual grwth, and self-actualizatin. HPC is apprpriate fr any patient and / r family living with, r at risk f develping, a life-threatening illness due t any diagnsis, with any prgnsis, regardless f age, and at any time they have unmet expectatins and/r needs, and are prepared t accept care. It may cmplement and enhance disease- mdifying therapy r it may becme the ttal fcus f care. It is mst effectively delivered by an interdisciplinary team f healthcare prviders wh are bth knwledgeable and skilled in all aspects f the caring prcess related t their discipline f practice. These prviders are typically trained by schls r rganizatins that are gverned by educatinal standards. Once licensed, prviders are accuntable t standards f prfessinal cnduct that are set by licensing bdies and/r prfessinal assciatins. While hspice palliative care has grwn ut f and includes care fr patients at the end f life, tday it shuld be available t patients and families thrughut the illness and bereavement experiences. Figure 2 illustrates the typical shift in fcus f care ver time. The tp line represents the ttal quantity f cncurrent therapies. The dashed line distinguishes therapies intended t mdify disease frm therapies intended t relieve suffering and/r imprve quality f life (labeled hspice palliative care). The lines are straight fr simplicity. In reality, the ttal quantity f therapy and the mix f cncurrent therapies will fluctuate based n the patient s and family s issues, their gals fr care and treatment pririties. At times, there may nt be any therapy in use at all. Figure 2: The Canadian Hspice Palliative Care Assciatin Mdel t Guide Hspice Palliative Care (2002) Nte: Fundatinal cncepts / assumptins relating t hw Hspice Palliative Care is delivered are summarized in Appendix 4 and are fundamental t this framewrk - 9 -
System Design Realm One: Care Settings and Services Desired Standard /Pillar: A full cntinuum f care settings and services is in place as per ppulatin based needs. Ratinale Patients requiring hspice palliative care have fluctuating and cmplex needs which change ver time. Rarely can these needs be cmpletely met by any ne facility, ne service r ne prvider. Many care settings and services are required. Thus when we are seeking t describe the system f HPC we must include all these care settings and services. Each f these care settings and services are cmpnent parts f the Hspice Palliative Care System. Once we understand the cmpnent parts we then can determine sectr / service gaps that may exist and develp inclusive system level indicatrs and evaluatin prcesses. Patients requiring hspice palliative care have fluctuating and cmplex needs which change ver time. Rarely can these needs be cmpletely met by any ne facility, ne service r ne prvider. Many care settings and services are required. Criteria fr inclusin Fr the purpses f this listing f services and sectrs the fllwing inclusin criteria are used: Sectrs and Services that have an explicit mandate &/r dedicated funding fr HPC service delivery; and/r Settings f care where a significant number f patients die; and/r Settings and services that have specific data cdes related t HPC; and/r Services that are supprted as essential cmpnents f a HPC prgram even if little data is available (e.g. Grief and bereavement services) Limitatins The cmpnent parts (listed belw) related t care settings and services simply name a number f key sectrs and services t be cnsidered in ur system f HPC. Each sectr / service is described in greater detail in varius reginal reprts (12) (10) (5) (6) (7) (9) (11) (8). The need fr numerus sectr / services is supprted by the CHPCA Mdel t Guide Hspice Palliative Care (17). - 10 -
Search Questins: What are the key sectrs & services (cmpnent parts) which cmprise a Reginal System f HPC? What vlumes f each service wuld cmprise a full cntinuum? Key Cnsideratins related t care settings and services include the fllwing: 1. Cmpnent parts f the System a. 24/7 Care Settings Hspitals Acute Care Cmplex Cntinuing Care Lng Term Care Hmes Residential Hspices Patients Hme:(CCAC & Direct Care Service Prviders) nte patients hme in this cntext includes: cmmunity living hmes and the many ther settings where patients live and die b. Ambulatry Care / Day Prgrams Outpatient Clinics Day Prgrams (including thse run by vlunteers) Physician s ffices, Cmmunity Health Centres, Family Health Teams etc. Access t specialist level HPC varies in these settings. Access mdels include: Palliative Care units, Palliative Care interdisciplinary cnsultatin teams Palliative Care cnsultatin physicians Palliative Care Cnsultatin nurses etc. (Refer t next sectin Prgrams within Care Settings) c. Cmmunity Supprt Services / Prgrams Palliative Pain & Symptm Management Cnsultatin Prgram (capacity building resurce) Educatin Prgrams Vlunteer Hspice Prgrams 2. Use f ppulatin based guidelines t help determine full cntinuum. Ppulatin based guidelines help determine hw much f each service is cnsidered adequate t make up the full cntinuum. Ppulatin based guidelines have been used by Fraser Health regin in British Clumbia (18). These guidelines are based n wrk dne in Australia. (15). Several regins in Ontari are reviewing the use f such guidelines (5) (10) (7) (12). This is an area fr future develpment in Ontari (refer t realm number 6 Plicies, Guidelines and Funding). 3. Partners In additin t the cre cmpnents listed abve, many partners are required t prvide quality Hspice Palliative Care (e.g. ALS sciety, Heart and Strke Fundatin etc.). Cmments relating t use f this listing when reviewing reginal HPC systems Since ppulatin based guidelines are nt yet widely available, it is suggested that fr each care setting current vlumes f service are listed. This will prvide baseline infrmatin. Under partners - a statement arund hw partners are engaged and wh the partners represent is suggested. - 11 -
System Design Realm Tw: Prgrams within Care Settings and Services Desired Standard / Pillar: In each care setting where patients die there is a clearly defined Palliative Care Prgram All Hspice Palliative Care Services (e.g. Day Prgrams, Clinics, Cnsultatin Services, Vlunteer Services and Educatin Services) articulate a clear mandate and service specific criteria. Ratinale Every care setting/service caring fr dying patients requires access t specialist level Hspice Palliative Care expertise. The Canadian Hspice Palliative Care Assciatin indicates that this speciality service is best prvided in an interdisciplinary team prgram (17). The listing belw prvides a checklist f basic elements indicating that a HPC prgram exists within a specific care setting. If we are seeking t develp a whle system attentin must be given t key elements f service delivery within each f the cmpnent parts. The system as a whle is nly as strng as the weakest f its cmpnent parts. (Cmpnent parts are listed in realm 1) The cncept f integratin (see realm 3) presuppses the presence f several functining independent prgrams linking acrss sectrs. We cannt link t smething that des nt exist. Thus we must have sme basic understanding f (and sme way t define) what cnstitutes a HPC prgram within each sectr/setting. Additinally we must have a sense f the mandate f all HPC services as they prvide supprt t patients, families and care prviders in a variety f care settings. A clear understanding f this mandate will prevent duplicatin and will maximize access t these services. As we cntinue t refine prgramming within each f the cmpnent parts and strengthen linkages between and amng prviders it is ur visin that a gestalt will emerge in which the whle becmes greater than the sum f its cmpnent parts. Limitatins If we are seeking t develp a whle system attentin must be given t key elements f service delivery within each f the cmpnent parts This highlighting f these prgram elements and clear mandates des nt seek t replace r summarize the many excellent: accreditatin prcesses (19), gld standard dcuments (20), best practice reviews etc. that exist t prvide cmprehensive guidance t prvisin f high quality f care and internal functining f an rganizatin/service. It is assumed that general principles f safe and effective care are in place in each care setting/service. - 12 -
Search Questins: What are the basic elements that supprt a HPC prgram within a specific care setting? A listing f these key elements will help specific sectrs/rganizatins answer the questin D we have a Hspice Palliative Care prgram in ur setting? What are the basic elements f a clear mandate fr HPC cmmunity services and educatin services? Key Cnsideratins related t prgrams within care settings and services 1. Basic elements indicating that a HPC prgram exists within a specific care setting include: A mdel f care is articulated Prcesses, t access specialist level expertise, are clearly defined (including 24/7 access) Relatinship between primary and specialist care is articulated Clear admissin criteria is cited Educatin abut HPC is ffered t specialist prviders and t primary level prviders (t enable primary prviders t address basic HPC needs and t knw when the patient requires a referral t specialist level care prviders) Key rganizatinal cntact is identified Access t Interdisciplinary expertise is available Linkages with partners is evident Reprting, evaluatin, CQI and data accuntability ccurs Relevant accreditatin standards/ best practice guidelines are in evidence Evidence f an awareness f the CHPCA Mdel t Guide Hspice Palliative Care (17) and its Guide t Organizatinal Develpment & Functin : Missin & Visin, Square f Organizatin and Care, Principles and Nrms f Practice Cmments relating t use f this listing when reviewing reginal HPC systems: Fr each care setting a template which allws fr narrative respnse is useful. (See Appendix 3). 2. Basic elements f a clear mandate fr HPC cmmunity services and educatin services invlve answers t specific questins including: What ppulatins d we serve / nt serve? What is ur scpe? Hw d we reprt ur wrk (data, accuntability, evaluatin)? Hw d we integrate with ur partners? This template requires that each care setting describes hw the specific elements are cnsidered and articulated. It des nt prescribe what thse elements lk like, nly that they be in place and described. These are high level minimum expectatins. - 13 -
System Design Realm Three Integratin / Linkages Desired Standard / Pillar: Sectrs and services are linked by cmmn practice, prcesses, structures and educatin. Ratinale Transitins between sectrs are imprtant t patients and families. The patients and families perspective f the crdinatin, seamlessness and integratin, f ur HPC care system, is directly prprtinal t ur success (r lack theref) at integratin and linkages between / amng sectrs. Integratin is a key fcus in health care in Ontari. Discussin related t Integratin (refer als t Appendix 5) A number f integratin definitins exist, including: services, prviders and rganizatins frm acrss the cntinuum wrking tgether s that services are cmplementary, crdinated in a seamless unified system, with cntinuity fr the client (21). Integratin shuld be regarded as a means t assist in achieving desired system perfrmance r patient utcmes and extremely imprtant in assisting hspice palliative care systems t be effective. Based n an extensive literature review by Suter et al (21), there are ten key principles t successfully integrated health systems that may need t be cnsidered when it cmes t integrated hspice palliative care systems: 1. There shuld be cmprehensive (hspice palliative care) services acrss the care cntinuum. This will need t address the issue f care and services acrss a patient s disease trajectry frm the mst predictable f jurneys t the mst cmplex. (Refer t realm 1 fr listing f care settings and services) 2. Patient fcus in the integratin f health care systems Integrated systems design shuld be patient-centered integratin elements must be designed with the need t address patient issues first (and nt nly prvider issues). 3. Gegraphic cverage / rstering f patients is an imprtant cnsideratin. - Fcus n gegraphic regins is imprtant when it cmes t services integratin. Impact f physical gegraphy can have significant impact n the degree and effrt required t ensure integratin (i.e., rural vs. urban, rural/urban mix). 4. Standardized care delivery thrugh interprfessinal teams is key.- Althugh patient experiences will be different depending n the type f illness, scial and ther determinants impacting the patient and the surrunding health care system, the existence f interprfessinal care that is standardized will be imprtant in supprting integratin.(refer t realm 4 and Appendix 1 fr expanded cmments n interprfessinal team.) 5. Perfrmance management f integrated systems is integral. - The degree f integratin and its impact n clients must be mnitred and a fcus n cntinuus imprvement is critical fr sustainability and quality. 6. Financial management f integrated systems is an imprtant cnsideratin. - In rder t integrate health systems, financial investments are required. 7. Infrmatin technlgy and infrmatin management systems (IT/IM) are imprtant enablers twards successful integratin.- As with all crss sectr services, IT/IM will be required t supprt such issues as access t patient recrds, management f wait times and access (i.e., intake and referral). IT/IM cnsideratins include central access t the same systems by all relevant health care wrkers (primary care, acute care and hspice palliative care) in all care settings (hme/cmmunity, residential hspice, lng term care and hspital). 8. Organizatinal culture and leadership twards integratin are essential. - A cultural cmmitment and fcused leadership in integratin will be fundamental in initiating as well as sustaining integrated systems. Within hspice palliative care, many service prviders cmprise the whle system. Sharing the same cultural and leadership values and beliefs will assist in cementing a sense f partnership, cllabratin and crdinatin twards integratin. 9. Gvernance structure cnsideratins arund integrated systems are necessary. - In Ontari, hspice palliative care systems gvernance is decentralized at the prvincial level and varies acrss regins. (Refer t accuntability realm 5). 10. Physician engagement is a vital issue. - Literature reveals that physician engagement will be necessary in driving integrated systems. In hspice palliative care, physician engagement is imprtant fr a number f reasns including (list nt exhaustive): Capacity within the hspice palliative care system in the face f an aging ppulatin; and Cntinuity f care and the issue f the mst respnsible persn n care issues. (It is imprtant t nte the issues f rphan patients and access t physician care fr vulnerable and marginalized ppulatins [i.e., hmeless]). - 14 -
Search Questins: Hw d we in the HPC system address integratin? What are the fundamental integratin essentials? Key Cnsideratins related t Integratin include the fllwing: 1. Cmmn practice and prcesses: Clear criteria differentiating rles f varius sectrs and services within a given gegraphic area Clear access pints/ prcesses fr admissin and discharge t / frm sectrs / services Clear transitin prcesses (hand-ffs) between sectrs / services Use f Cmmn tls 2. Functinal and Clinical Infrastructures include: Venues fr integrated care planning (crss sectr patient specific runds, team meetings) Venues fr cllabrative prcess develpment (EOLCN tables etc.) Shared cmmunicatin/it with accessible patient recrds between sectrs/services (e-health: cmmunicatin and knwledge management) 3. Cmmn understanding f service delivery mdels including: Cmmn understanding f hw specialist level expertise / cnsultatin teams functin including: type f Shared Care Mdel used in each sectr hw specialists/teams link with Primary Care hw specialists in each care setting link with each ther 4. System Level Data cllectin and evaluatin Develpment f system level indicatrs, evaluatin framewrk and CQI activities using balanced screcard apprach with quadrants that address: patient / family perspective utilizatin financial innvatin 5. Cnnectins with brad system f health care including: shared appraches t Health Care Cnsent and Advance Care Planning cnnectins with Prvincial, Natinal & Internatinal bdies cnnectins with brader Health Care system reginally and prvincially 6. Regin-wide strategies and blueprints fr: educatin cmmunicatin 7. Prvincial level leadership and cnsistency: Cntinued advancement f use f cmmn tls Develpment f prvincial balanced screcard etc. Onging prvincial level venue t cntinue cllabrative crss sectr system develpment. Cmments relating t use f this listing when reviewing reginal HPC systems This listing is nt exhaustive but is aimed at triggering crss sectr patient fcused activity. All regins are seeking enhanced integratin and have made sme prgress n each f these cnsideratins. - 15 -
System Design Realm Fur Human Resurces Desired Standard/Pillar: Adequate numbers f trained prfessinals are available as per ppulatin based needs assessment. Ratinale Cmpassinate, skilled peple are at the very cre f Hspice Palliative Care. Equipment is imprtant, medicatin is vital, but withut the peple the right care des nt reach the patient. Shrtages f HPC persnnel are reprtedly endemic acrss Ontari. (16) Addressing human resurce issuess is fundamental t develping a functining system f HPC. Limitatins Many limitatins exist as we explre the Human Resurces realm f system design / system develpment. We will tuch the surface by listings issues that need t be cnsidered. Search Questins: What are the key categries f prfessinals that make up a HPC team? What training is required at what level? What are adequate numbers? (i.e. ppulatin based ratis per prfessinal categry) What innvative care mdels can we recmmend t maximize Human Resurce expertise? Key Cnsideratins related t human resurces include the fllwing: 1. Team cmpsitin - HPC is by definitin n an interdisciplinary / cllabrative care and shared care prcess. Therefre a brad spectrum f care prviders is required. ibes 3 levels f expertise 2. Delineatin f educatin and training at primary and specialist levels - CHPCA descri (see Appendix 4). Mre wrk is required t delineate and standardize HPC training requirements fr all prviders in terms f undergraduate, pst-graduate, cntinuing educatin etc.. 3. Develpment f ppulatin based guidelines t help determine needs and a resultant HPC Human Resurce Plan fr the regin/prvince. - Ppulatin based guidelines help determine hw many f each prfessin is cnsidered adequate. Ppulatin based guidelines have been used by Fraser Health regin in British Clumbia. (18). These guidelines are based n wrk dne in Australia. (15). This is an area fr future develpment in Ontari (refer t realm number 6 Plicies, Guidelines and Funding). 4 Enhancement f innvative care mdels. Innvative care mdels are being develped t specialist level experts. maximize the use f Cmments relating t use f this listing when reviewing reginal HPC systems Since ppulatin based guidelines are nt yet widely available, it is suggested that fr each prfessinal categry current numbers f specialist level prfessinals are listed. Since clear criteria are nt yet available fr defining specialist level in each prfessinal categry, it is suggested that specialist level, as understd by each regin, be described. This will prvide a baseline f infrmatin. - 16 -
System Design Realm Five Accuntability Desired Standard/Pillar: System level accuntability is clearly defined and cmmunicated. Ratinale In as much as a reginal system f care is really a system f systems, system level accuntability is shared accuntability. System level accuntability is vested accuntability ; vested by thse with funding and accuntability authrity (e.g. the Lcal Health Integratin Netwrk [LHIN]), peratinal respnsibility (e.g. hspitals, CCAC etc.) and versight and crdinating rles (e.g. Cancer Care Ontari etc.). If we are t develp a functining crss sectr Reginal System f Hspice Palliative Care we need t develp reginal HPC prgram accuntability mdels that supprt and advance the care f patients acrss sectrs, while aligning with peratinal accuntabilities within each sectr/service. The LHINs are key in defining the parameters f this reginal accuntability. Prvincial cnsistency is imprtant, in terms f high level expectatins f structures, prcesses and utcmes related t reginal system level accuntability mdels. If we are t develp a functining crss sectr Reginal System f Hspice Palliative Care we need t develp reginal HPC prgram accuntability mdels that supprt and advance the care f patients acrss sectrs, while aligning with peratinal accuntabilities within each sectr / service. Limitatins The discussin, which fllws is preliminary wrk related t system level accuntability. In Ontari, where each rganizatin has its wn bard and each bard has its individual fiduciary respnsibility fr the specific rganizatin (versus fr the system as a whle), this crss sectr accuntability is a cmplex issue and is nly tuched upn in this dcument. - 17 -
Search Questins: What are key functins f system level accuntability? What are key mechanisms which facilitate system level accuntability? What fundamental principles shuld be fllwed t advance system level accuntability? Key Cnsideratins related t accuntability include the fllwing: 1. Key Functins f system level accuntability include: evaluatin f HPC utcmes at a system level brad system design system level integratin f services prmtin f service innvatins develping system level cmmunicatin - knwledge management transfer mnitring and assessment f needs 2. Key Mechanisms which facilitate reginal system level accuntability are listed belw: A reginal accuntability structure is established. The rle and accuntability mechanism fr this accuntability structure: is endrsed by the LHIN & aligns with MOHLTC plicies / directins aligns with system-wide cancer plan and system plans frm ther relevant disease specific initiatives aligns with sectr-specific accuntability agreements / reprting requirements includes clear accuntability agreements in terms f peratinal rles, advisry rles and evaluatin rles as vested by the LHIN and ther relevant peratinal sectrs / services System level indicatrs and CQI activities are develped, mnitred and reprted This reginal accuntability structure has accuntability t the LHIN Prvincial cnsistency in terms f accuntability expectatins is develped Cmments relating t use f this listing when reviewing reginal HPC systems This listing is intended t bring attentin t the need fr clear accuntabilities in a crss sectr system. 3. Fundamental Principles t advance system level accuntability are based n principles f effective accuntability (as utlined in the December 2002 Reprt f the Auditr General f Canada (22)) and include: clear rles and respnsibilities clear perfrmance expectatins balanced expectatins and capacities credible reprting respnsible cmmunicatin reasnable review and adjustment. In Ontari s system f systems crss sectr accuntability is ften difficult t peratinalize. It is suggested that each regin articulate its accuntability understandings as related t a crss sectr HPC prgram. This system design framewrk listing will serve as a prmpt fr specific descriptin. - 18 -
System Design Realm Six Plicies, Guidelines and Funding Desired Standard/Pillar: Funding mdels, guidelines and plicy directins supprt an integrated system. Ratinale Remediatin f plicy and funding issues may be beynd the scpe f an individual regin. Hwever such issues are included in a reginal framewrk because they directly impact nt nly patient care but system design and develpment. Wrk n these issues is incrprated int reginal wrk plans as lcal prviders wrk cllabratively with prvincial partners t begin t address these issues. Awareness f these issues is necessary t alert the LHIN t such shrtfalls and t create temprary wrk arund slutins t ffset the negative impact f these issues n patient care. The suggestins are starting pints fr cllective wrk at the prvincial level. Plicy and funding issues are included in a reginal framewrk because they directly impact nt nly patient care but system design and develpment. Discussin related t Plicies, Guidelines and Funding The primary plicy issue in Ontari is the absence f an integrated system-wide plicy related t Hspice Palliative Care. The Ontari gvernment shwed leadership in 2004 by funding a prvincial end-f-life care strategy. This strategy was an imprtant first step, but it fell shrt f creating an effective system f hspice palliative care services in Ontari. The strategy was less effective than envisined due t the lack f an integrated system-wide plicy. There is significant disparity amng Lcal Health Integratin Netwrks in adpting hspice palliative care as a cmpnent f their reginal pririties. This reginal incnsistency creates a prvincial landscape in which hspice palliative care is patchy. Furthermre, lng-term sustainability was nt addressed by the strategy. A prvincial plicy related t Hspice Palliative Care wuld enhance integrated Hspice Palliative Care in Ontari. Additinally Hspice Palliative Care planning and service delivery will be facilitated by increased standardizatin and prvincial level guidelines. Strategic funding appraches will fill specific gaps in care delivery. Limitatins The discussin belw highlights a number f key issues withut prviding details n why these are seen t be imprtant. Many f these issues are addressed in mre detail in ther reprts (23) (14) (16). - 19 -
Search Questins: What plicy enhancements wuld mst facilitate an integrated system f HPC in Ontari? What prvincial level strategies/guidelines/initiatives are needed t advance system level HPC delivery? What are examples f strategic funding investments that wuld imprve the care f peple requiring Hspice Palliative Care? Examples f key cnsideratins related t plicies, funding and guidelines include the fllwing: 1. Plicy and funding issues: A cmprehensive Hspice Palliative Care Plicy fr Ontari is needed. Cnsistent and adequate funding fr: prfessinals (e.g. Alternate payment plan fr physicians) prgramming (including residential hspices) and supplies (medicatin etc.) reginal accuntability structures and prvincial level supprt structure Full scpe pprtunities fr Nurse Practitiners and thers 2. Prvincial level guidelines fr: Ppulatin based ratis fr: specialist cnsultatin teams/services, dedicated beds including residential hspices prfessin specific ratis (Refer t Australia wrk (18)) Reprting standardized accessible data sets with perfrmance data linked t quality indicatrs CQI and research activities Educatin basic and advanced. 3. Lcal understanding f plicy issues and the impact n reginal care prvisin is needed. Cmments relating t use f this listing when reviewing reginal HPC systems Issues relating t plicy, funding and guidelines impact every reginal prgram. Since this sectin is primary related t wrk yet t be dne, it is suggested that when reviewing its reginal HPC system, each regin include the fllwing: - A descriptin f what plicy issues mst impact lcal care prvisin, - A descriptin n hw these plicy issues impact lcal care, - A descriptin n hw these issues are being cped with at the reginal level (i.e. describe any wrk arund slutins). - A descriptin n what lcal members are ding t help rectify these issues. - 20 -
Summary and Next Steps THE SYSTEM DESIGN FRAMEWORK discussed here prvides us with a way t rganize ur thinking and ur wrk. It directs ur activity t six realms f system develpment and prvides key cnsideratin in each realm. System level develpment requires simultaneus fcus n these interrelated realms. A system level framewrk will enhance ur ability t plan and review hw each part f the system impacts the system as a whle. This framewrk prvides a way t view ur multisectr system f palliative care in Ontari. This system f palliative care is really a system f systems T mve frm ur current system f sectr-specific service prvisin t a true reginal system f palliative care service prvisin requires that: 1. A full cntinuum f care settings and services is in place; 2. In each care setting where patients die, there is a clearly defined Palliative Care Prgram; 3. Sectrs and services are linked by cmmn practice, prcesses, structures and educatin; 4. Adequate numbers f trained prfessinals are available; 5. System level accuntability is clearly defined and cmmunicated; and 6. Funding mdels, guidelines and plicy directins supprt an integrated system. These six requirements/standards are the fundatinal pillars arund which this system design framewrk is cnstructed This framewrk has been used t cmplete a preliminary inventry f Hspice Palliative Care Service in Ontari. (16) It is has been used t help frame systematic reviews f Hspice Palliative Care Systems/Prgrams at a reginal level. It can be used as a tl t assist with: System reviews/evaluatin/inventries Gap analysis Framing f: Strategic pririties Gals / bjectives Wrk plans Status / update reprts (Refer t Appendix 3 fr an example f a very rudimentary attempt at presenting a multifactral review f system level activities based n this framewrk). (Refer t Appendix 1 fr a Summary Table f: Framewrk Realms, Standard Statements/Pillars and Key Cnsideratins) (Refer t Appendix Tw fr an Expanded Schematic f the System Design Framewrk including Realms, Standard Statements/Pillars and Highlights f Key Cnsideratins) NEXT STEPS include using this framewrk as a stimulus fr further discussin related t develpment f reginal systems f hspice palliative care delivery in Ontari and leveraging these reginal systems t advance a prvince-wide system. It is anticipated that this framewrk will be used t help develp a prvincial level plicy fr Hspice Palliative Care in Ontari and may be used as a template t help direct the creatin f Hspice Palliative Care plans in each LHIN regin. This framewrk is a wrk in prgress and will evlve as we cntinue t create reginal systems f Hspice Palliative Care in Ontari within a prvince-wide cntext. - 21 -
Wrks Cited 1. Erie St Clair End f Life Care Netwrk; Beth Lambie. System Design Framewrk - Develping a Reginal System f Hspice Palliative Care Delivery in Erie St. Clair. s.l. : Erie St. Clair End f Life Care Netwrk, 2009. 2. Ontari Assciatin f Cmmunity Care Access Centres. Reference Dcument t Supprt the Develpment f Interdisciplinary and Integrated End-f-Life Care Service Delivery Mdels in Ontari. s.l. : David Paquette, Summit Cnsulting, 2005. p. 6. 3. Prvincial End-f-Life Care Netwrk - Ontari; Paul Cavanagh. Annual Reprt - Prvincial End-f-Life-Care Netwrk. s.l. : Prvincial End-f-Life Care Netwrk, 2008. 4. Prvincial End-f-Life Care Netwrk - Ontari. Gvernance Dcument. s.l. : Prvincial End-f-Life Care Netwrk - Ontari, 2009. 5. Erie St. Clair End-f-Life Care Netwrk; Beth Lambie. Hspice Palliative Care in Erie St. Clair, Reprt n Current Services and Recmmendatins fr Future Systems. Erie St. Clair End-f-Life Care Netwrk. [Online] 2008. [Cited: July 10, 2010.] http://www.escelcn.ca/abutus/dcuments/currentservicesrecmmend.pdf. 6. Hamiltn Niagara Haldimand Brand Hspice Palliative Care Netwrk; Julie Darnay. HNHB HPC Netwrk Assessment and Analysis f Palliative Care Needs in Hamiltn Niagara Haldimand Brant. s.l. : Hamiltn Niagara Haldimand Brand Hspice Palliative Care Netwrk, 2008. 7. Suth East Hspice Palliative Care Netwrk. Twaards a Hspice Palliative and End-f-Life Care System Design fr Suteastern Ontari - A Fundatin Reprt fr Future Discussin and Planning. s.l. : Suth East Hspice Palliative Care Netwrk, 2009. 8. Waterl Wellingtn Hspice Palliative Care Netwrk; Andrea Martin. Waterl Wellingtn Hspice Palliative Care System Design. s.l. : Waterl Wellingtn Hspice Palliative Care Netwrk, 2008. 9. Suthwest End-f-Life Care Netwrk; Paul Cavanagh. Suthwest End-f-Life Care Netwrk Annual Reprt. s.l. : Suthwest End-f-Life Care Netwrk, 2008. 10. Champlain Hspice Palliative Care and End-f-Life Care Netwrk; Planning Cuncil. Champlain Reginal Hspice Palliative Care Prgram Plan. s.l. : Champlain Hspice Palliative Care and End-f-Life Care Netwrk, 2010. 11. Trnt Central Hspice Palliative Care Netwrk; Siu Mee Cheng. Strategic Plan. s.l. : Trnt Central Hspice Palliative Care Netwrk, 2010. 12. Central East Hspice Hspice Palliative Care Netwrk; Kirsten Schmidt-Chamberlain. Creating System Integratin fr Hspice Palliative Care Services in the Central East LHIN. s.l. : Central East Hspice Hspice Palliative Care Netwrk, 2010. 13. Brazil, K, et al. Building Primary Care Capacity in Palliative Care: Prceedings f an Interprfessinal Wrkshp. Summer 2007, Vl. 23, 2. - 22 -
14. Cancer Care Ontari. Imprving the Quality f Palliative Care Services fr Cancer Patients in Ontari. s.l. : Cancer Care Ontari, 2006. 15. Palliative Care Australia. A Guide t Palliative Care Service Develpment - A Ppulatin Based Apprach. [Online] 2005. [Cited: January 15, 2009.] www.pallcare.rg.au. 16. Prvincial End f Life Care Netwrk - Ontari. Preliminary Inventry/Review f Hspice Palliative Care in Ontari. s.l. : Prvincial End f Life Care Netwrk, 2009. 17. Ferris, FD, et al. A Mdel t Guide Hspice Palliative Care: Based n Natinal Principles and Nrms f Practice. Ottawa, ON : Canadian Hspice Palliative Care Assciatin, 2002. ISBN: 1-896495-17-6. 18. Fraser Health. Fraser Health Acute Care Capacity Initiative: ACCI Service Plan fr Acute Palliative Care. s.l. : Fraser Health, March 2005. 19. Accreditatin Canada. Accreditatin Canada Hspice Palliative And End f Life Care Services. [Online] http://www.accreditatin.ca/accreditatin-prgrams/qmentum/standards/hspice-palliative-and end-f-lifeservices/. 20. Canadian Hspice Palliative Care Assciatin. The Pan-Canadian Gld Standard fr Palliative Hme Care. Ottawa : CHPCA, 2007. 21. Suter, E, et al. Health Systems Integratin; Definitins, Prcesses & Impact; A research Synthesis. Calgary, Alta : s.n., Octber 2007. 22. Auditr General f Canada. Principles f Effective Accuntability. Reprt f the Auditr General f Canada. s.l. : (as cited by P. Cavanagh - presentatin t SuthWest End f Life Care Netwrk - Fall 2006), December 2002. 23. Ontari Hspice Palliative Care Calitin f Ontari. Twards an Integrated Hspice Palliative Care System in Ontari. s.l. : Ontari Hspice Palliative Care Calitin f Ontari, 2010 (wrk still in prgress as f Sept 2010). 24. Erie St Clair End f Life Care Netwrk; Beth Lambie. Review f Fundatinal Cncepts Related t Hspice Palliative Care Service Delivery. Erie St. Clair End-f-Life Care Netwrk. [Online] May 2009. [Cited: June 10, 2010.] http://www.escelcn.ca/abutus/dcuments/fundatinalcncepts.pdf. - 23 -
Appendix 1 Summary Table f Details t cnsider under each f the 6 Realms Care Settings and Services Desired Standard: A full cntinuum f care settings / services is in place as per ppulatin based needs A full cntinuum f Care Settings and Services fr Hspice Palliative Care includes the fllwing: 1. Cmpnent parts f the System a. 24/7 Care Settings Hspitals Acute Care (including Tertiary Care and hst hspitals fr Reginal Cancer Prgrams) Cmplex Cntinuing Care Lng Term Care Hmes Residential Hspices Patients Hme (CCAC & Direct Care Service Prviders) - nte patients hme in this cntext includes: cmmunity living hmes and the many ther settings where patients live b. Ambulatry Care / Day Prgrams Reginal Cancer Centres including Palliative Care Clinics in the Centre r hst hspital Clinics in ther lcatins Day Prgrams (including thse run by vlunteers) Physician s ffices, Cmmunity Health Centres, Family Health Teams etc. c. Cmmunity Supprt Services / Prgrams Palliative Pain & Symptm Management Cnsultatin Prgram Educatin Prgrams Vlunteer Hspice Prgrams Grief and Bereavement Services d. Expert Palliative Care Cnsultatin Teams / Services serving patients in the 24/7 care settings, Ambulatry care / Day prgrams etc. Teams serving nly ne care setting Teams serving acrss several sectrs 2. Use f ppulatin based guidelines t help determine full cntinuum 3. Partners list partners and hw they are engaged with cre HPC services. Prgrams within Care Settings and Services Desired Standard: In each care setting where patients die, there is a clearly defined Palliative Care Prgram develped. (i.e., 24/7 care settings) All HPC Services (e.g., Day Prgrams, Clinics, Cnsultatin Services, Vlunteer Services and Educatin Services) articulate a clear mandate and service specific criteria. 1. Basic elements indicating that a HPC prgram exists within a specific care setting include: A mdel f care is articulated Prcesses, t access specialist level expertise, are clearly defined (including 24/7 access) Clear admissin criteria Educatin abut HPC is ffered t primary level prviders (t enable them t address basic HPC needs and t knw when the patient requires a referral t specialist level care prviders) Key rganizatinal cntact is identified Access t Interdisciplinary expertise is available Linkages with partners is evident Reprting, evaluatin, CQI and data accuntability ccurs Relevant accreditatin standards/ best practice guidelines are in evidence Evidence f an awareness f the CHPCA Mdel t Guide Hspice Palliative Care (17) and its Guide t Organizatinal Develpment & Functin : Missin & Visin, Square f Organizatin and Care, Principles and Nrms f Practice - 24 -
2. Basic elements f a clear mandate fr HPC cmmunity services and educatin services invlve answers t specific questins including: What ppulatins d we serve / nt serve? What is ur scpe? Hw d we reprt ur wrk (data, accuntability, evaluatin)? Hw d we integrate with ur partners? Integratin / Linkages Desired Standard: Sectrs and services are linked by cmmn practice, prcesses, and structures and pssess a cmmn understanding f service delivery mdels. Reginal Integratin Essentials 1. Cmmn practice and prcesses: Clear criteria differentiating rles f varius sectrs and services within a given gegraphic area Clear access pints/ prcesses fr admissin and discharge t / frm sectrs / services Clear transitin prcesses (hand-ffs) between sectrs / services Use f Cmmn tls 2. Cllabrative structures include: Venues fr integrated care planning (crss sectr patient specific runds, team meetings) Venues fr cllabrative prcess develpment (EOLCN tables etc.) Shared cmmunicatin/it with accessible patient recrds between sectrs/services Defined access t specialist expertise / expert cnsultatin teams-with crss sectr cnnectins and identified human cnnectrs frm each care lcatin/service Crss sectr registry f HPC patients 3. Cmmn understanding f service delivery mdels including: Cmmn understanding f hw specialist level expertise / cnsultatin teams functin including: type f Shared Care Mdel used in each sectr hw specialists/teams link with Primary Care hw specialists in each care setting link with each ther 4. System Level Data cllectin and evaluatin Develpment f system level indicatrs, evaluatin framewrk and CQI activities using balanced screcard apprach with quadrants that address: > patient/family perspectives > financial > utilizatin > innvatin 5. Cnnectins with brad system f health care including: Shared appraches t Health Care Cnsent and Advance Care Planning Cnnectins with Prvincial, Natinal & Internatinal bdies Cnnectins with brader Health Care system reginally and prvincially 6. Regin-wide strategies and blueprints fr: Educatin Cmmunicatin (1) 7. Prvincial level leadership and cnsistency: Cntinued advancement f use f cmmn tls (e.g. Ontari Cancer Symptm Management Cllabrative) Develpment f prvincial balanced screcard etc. Onging prvincial level venue t cntinue cllabrative crss sectr system develpment. - 25 -
Human Resurces Desired Standard: Adequate numbers f trained prfessinals are available as per ppulatin based needs assessment. 1. Team cmpsitin - Listing f key HPC prfessinals HPC is by definitin an interdisciplinary / cllabrative care and shared care prcess Therefre a brad spectrum f care prviders is required. Specialist /Tertiary Level Prviders include: HPC Physicians Nurse Practitiners trained in HPC, Expert HPC Nurses, HPC Specialists in all ther relevant prfessins including: - Scial Wrk - Spiritual Care - Psychlgists - Grief and Bereavement - Vlunteers, etc - Persnal Supprt Wrkers (PSWs) - Allied Health (e.g. Pharmacists, Rehabilitatin Therapies, Respiratry Therapy, Dietician, etc.) Primary Care Prviders Physicians including: - Family Physicians - Family Health Teams - Cmmunity Health Centres - Specialists in ther nn-palliative fields (Surgens etc) - Other physicians nt trained in HPC Nurses Primary Care prviders in all ther relevant prfessins including: - Scial Wrk - Spiritual Care - Psychlgists - Grief and Bereavement - Vlunteers and thers - Persnal Supprt Wrkers (PSWs) - Allied Health (e.g. Pharmacists, Rehabilitatin Therapies Respiratry Therapy, Dietician, etc.) 2. Delineatin f educatin and training at primary and specialist levels fr varius prfessinal categries (undergraduate training requirements fr all prviders; pst-graduate curses, in-service training). 3. Develpment f ppulatin based guidelines t help determine needs and a resultant HPC Human Resurce Plan fr the regin/ prvince. 4. Enhancement f innvative care mdels including: Shared care between primary care and specialist levels (with capacity building intent) Enhanced team rles cllabrative care Develpment f trans-discipline cnsultatin mdels Accuntability Desired Standard: System level accuntability is clearly defined and cmmunicated. 1. Key Functins f system level accuntability include: evaluatin f HPC utcmes at a system level brad system design system level integratin f services prmtin f service innvatins develping a system level cmmunicatin strategy mnitring and assessment f cmmunity needs 2. Key Mechanisms which facilitate reginal system level accuntability are listed belw: A reginal accuntability structure is established. The rle and accuntability mechanism fr this accuntability structure: is endrsed by the LHIN & aligns with MOHLTC plicies / directins aligns with system-wide cancer plan and system plans frm ther relevant disease specific initiatives aligns with sectr-specific accuntability agreements / reprting requirements includes clear accuntability agreements in terms f peratinal rles, advisry rles and evaluatin rles as vested by the LHIN and ther relevant peratinal sectrs / services System level indicatrs and CQI activities are develped, mnitred and reprted - 26 -
Regular reprting t the LHIN frm this reginal accuntability structure ccurs Prvincial cnsistency in terms f accuntability expectatins is develped (1 pp. 13, 14) 3. Fundamental Principles t advance system level accuntability are based n principles f effective accuntability (as utlined in the December 2002 Reprt f the Auditr General f Canada (22)) and include: clear rles and respnsibilities clear perfrmance expectatins balanced expectatins and capacities credible reprting respnsible cmmunicatin reasnable review and adjustment. Plicies, Guidelines and Funding Desired Standard: funding mdels, guidelines and plicy directins supprt an integrated system. 1. Plicy and funding issues: A cmprehensive Hspice Palliative Care Plicy fr Ontari is needed. Cnsistent and adequate funding fr: physicians prgramming (including residential hspices) and supplies (medicatin etc.) reginal accuntability structures and Prvincial level supprt structure Full scpe pprtunities fr Nurse Practitiners and thers 2. Prvincial level guidelines/strategy fr: System design Ppulatin based ratis fr: specialist cnsultatin teams/services, dedicated beds including residential hspices prfessin specific ratis (Refer t Australia wrk (18)) Reprting standardized accessible data sets with perfrmance data linked t quality indicatrs CQI and research activities Educatin basic and advanced. (1 p. 16) 3. Lcal understanding f plicy issues and the impact n reginal care prvisin is needed - 27 -
Appendix 2 Expanded Schematic: System Design esign Framewrk - 28 -
Appendix 3 Examples f Tls fr use f System Design Framewrk Example ne -Sample template t use fr System Design Realm number tw: Prgrams within Care Settings Include a brief descriptin f each element within yur specific care setting Care Sectrs/Care Settings - 24/7 care settings Sample Elements Sectrs In Hme- CCAC & Cmmunity Service Prvider Agencies (CPSA) Residential Hspice Acute Care Cmplex Cntinuing Care Lng Term Care Hmes Mdel f Care Clear admissin criteria Prcesses, t access specialist level expertise Relatinship between primary and specialist care is articulated Relevant accreditatin standards/ best practice guidelines Educatin Key rganizatinal cntact identified Access t Interdisciplinary expertise is available Etc. - 29 -
Example tw -Rudimentary verview f a Multifactral Review f Current Status f a Reginal System f Hspice Palliative Care Based n System Design Framewrk Realms - 30 -
Appendix 4 -Fundatinal Cncepts Related t hw HPC is prvided Fundatinal Cncepts related t HPC Service Prvisin Fur fundatinal cncepts, relating t HPC Service Prvisin, frm the backdrp fr the System Design Framewrk. These are: 1. Many care settings and services are required. 2. Bth Specialists and Primary Level Prviders are needed (Specialist care is typically subdivided int tw levels Secndary and Tertiary). a. The majrity f HPC needs are met by Primary Care prviders. b. Cnsultatin Mdels may be required t link primary and specialist level care prviders thrughut the patients HPC jurney.these cnsultatin mdels include: cnsultatin nly, cnsultatin and shared care, cnsultatin and care prvisin as Mst Respnsible Prvider. 3. Every care setting/service, caring fr dying patients requires access t Specialist Level Hspice Palliative Care expertise (in additin t Primary Level Prviders). a. Access t expertise may be in-huse r external. 4. Teamwrk is essential - Cllabrative Care / Interdisciplinary Care invlves mre than ne prfessin. (Teamwrk is imprtant within the primary care team and within the specialist level team). a. Palliative Care Cnsultatin Teams (PCCT) are a preferred apprach t delivering HPC. Expanded explanatins f the 4 fundatinal cncepts available (24)at: http://www.escelcn.ca/abutus/dcuments/fundatinalcncepts.pdf Diagram belw summarizes a number f these cncepts refer t ESC December Reprt (5) fr mre detailed explanatin f this diagram. Available at: http://www.escelcn.ca/abutus/dcuments/currentservicesrecmmend.pdf - 31 -