Alberta Provincial Framework 2014 - Alberta Health Services

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Alberta Provincial Framework2014Alberta Health Services Palliative and End-of-life Care Provincial Framework

Table of Contents1.Executive Summary . 32.Introduction . 63.Vision . 74.Values, Norms, Culture and Belief. 84.1.4.2.Values . 8Norms, Culture and Beliefs . 85.Principles . 96.Definitions . 106.1.6.2.7.Alberta’s Palliative and End-of-Life Care Overview . 127.1.7.2.7.3.8.Historical Development . 12Current State Analysis . 13Introduction of Need for Improvement . 17Care Service Delivery and Organizational Evolution . 188.1.8.2.9.Palliative and End-of-life Care Services: Philosophical Definition . 10Palliative and End-of-Life-Care Services Administrative Definition . 11Introducing Innovative Service Delivery Concepts . 18Palliative and End-of-Life Care Programs and Services Service . 19Strategic Future Pillar Initiatives. 239.1.9.2.9.3.9.4.9.5.Program Development . 23Partnerships and Innovation . 27Practice and Standards . 28Education and Awareness . 29Communication. 3110. Research, Evaluation and Quality Improvement . 3311. Policy and Funding . 3412. Performance, Accountability and Outcomes Measurement . 35Appendix A . 37Appendix B . 39Appendix C . 41Appendix D . 44Appendix E . 46References . 49Alberta Health Services Palliative and End-of-life Care Provincial Framework2

1. Executive SummaryAudience:This Palliative and End-of-Life Care (PEOLC) Provincial Framework has been written by experts inPEOLC across Alberta. The primary audience for this document is PEOLC interdisciplinary teamproviders, policy makers and service administrators. Additionally, the framework is a resource forclinicians who are not familiar with PEOLC and want to offer high quality PEOLC services.Albertans are encouraged to be aware of and review the document, but it is not intended as aninformational guide for patients and families going through the PEOLC journey. There will be acompanion document developed for patients and families with this focus.The framework and the action items outlined in the initiatives are relevant to many other health andcommunity services such as senior executives within Alberta Health Services (AHS), the Governmentof Alberta, Primary Care Providers and Networks, and Family Care Clinics.Across Alberta, PEOLC is provided for patients and families in many different settings, with a varietyof programs and services from an array of standards. While there are some exceptional servicedelivery models and programs, they are not available within all geographies, creating inequity ofservices for Albertans. Many of these programs are internationally recognized for having led the wayin the development of integrated PEOLC services. Theseintegrated programs have made a substantial difference forpatients, families and providers over 20 or more years. Afterthis length of time, the program models need to take intoaccount the changing needs and expectations of thepopulation, as well as an evolving system organization. Localoperational programs also need to incorporate provincialmodels, provincial planning and oversight. This frameworkprovides a standardized approach and will direct thedevelopment of integrated and accessible care for the dying inour province.Historically, PEOLC program development has driven incialization of the programs and services represented inthis framework will help address inequities in the availability ofservices and programs for Albertans living with limited careoptions. Because of limited choices for where care can beprovided, many people at the end of their lives will be admittedto the hospital when they could be cared for in a communitysetting. Alberta’s PEOLC framework will outline provincialstandards that will enable exceptional services and introduceinnovative program solutions with the goal of reaching a levelof equity that provides choice, dignity, and care supports forpatients and their families, clinicians, and care providers,under a patient-centred model.We know that in other jurisdictions, PEOLC is providedsuccessfully at the primary health-care level if clinicians, careproviders, patients and families are supported well whencomplexities and emergencies arise. The ideal model forAlberta is one that continues to integrate programs andservices, and focus on diverse populations such as those withchronic diseases. Supporting practitioners at the primary health-care level and ensuring that PrimaryCare Networks, Family Care Clinics and independent physicians are aware of available resourcesand supports will lead to increased confidence for those managing individuals with life-limitingAlberta Health Services Palliative and End-of-life Care Provincial Framework3

illnesses within the community and result in decreased acute care usage. We need to identify patientmovement through data and information analysis. We also need better integration between andwithin primary, secondary and tertiary levels of care.The diagram below demonstrates that increased emphasis on building resources withincommunity-based care for the PEOLC population can re-shape and reduce the need for caredelivery within the acute care settings. The intent is to move resources from the red to theblack line (3).Canada and Alberta PopulationIn Canada, seniors make up Canada’s fastest growing age group. It is estimated that seniors 65years of age and up will account for up to 25% of the total population by 2036. Only 16% to 30% ofCanadians currently have access to or receive PEOLC services. In Alberta, the need for PEOLCspaces will only continue to grow.As demonstrated by the accompanying diagram, we see increased rates of cancers, and trends showincreasing rates of chronic illness. This suggests that we need to plan for increased services andproviders for PEOLC over time.Alberta Health Services Palliative and End-of-Life Care Provincial Framework4

The number of newcancer cases in Albertais expected to increasesteadily to about 27,640in 2030; this is mainlydue to the increases inthe age and size ofAlberta’s population. In2011, 16,200 Albertanswere diagnosed withcancer. Approximately 1in 2 Albertans willdevelop cancer in theirlifetime, and 1 in 4 willdiefromcancer.Neoplasms, or cancerrelated deaths, accountfor approximately 85%of palliative care servicecurrently (4).The GoalThe Alberta PEOLC framework has been developed with the goal of improving access to andstrengthening PEOLC programs and care for Albertans by: encouraging and supporting Advance Care Planning/Goals of Care Designations(ACP/GCD) introducing a standardized provincial model for PEOLC services spreading and integrating existing successful services introducing innovative service delivery methods developing provincial guidelines and standards, including enhancing education andresources for patients, families and clinicians standardizing communication and strengthening information integration conducting research, evaluation and measuring performance and outcomesTied to this framework is a list of initiatives that have been identified as areas that requiredevelopment to ensure that equitable services are made available for all Albertans regardless of ageor geography. Clinicians need to be well supported, research and innovation need to be incorporated,and outcomes for patients and families need to be measured to ensure improvement is constant.The framework clearly articulates the current status of PEOLC across Alberta and the identified areasthat require strengthening and development through initiatives. The initiatives listed within theframework are foundational to all the stakeholders who: deliver PEOLC; educate others with apalliative approach; conduct research; and evaluate the effectiveness of program improvements.Alberta Health and Alberta Health Services (AHS) require supportive directional policies and fundingto ensure success.Alberta Health Services Palliative and End-of-Life Care Provincial Framework5

2. IntroductionThis document represents a re-examination and cross-collaborative effort toward the development ofa provincial PEOLC framework. Regional, comprehensive, integrated and co-ordinated PEOLCprograms were pioneered in Alberta in the mid-1990s. However, more options for care and improvedintegration and co-ordination of care are needed for all Albertans regardless of type of illness orgeographical setting. In addition, the need for, and timing of, a sharpened focus on a PEOLCprovincial framework is reinforced and supported through the following recent business strategiesand developments in Alberta: Alberta’s Cancer Plan to 2030 Organizational changes in AHS leading to the launch of Strategic Clinical Networks Creation of the Palliative Institute through Covenant Health Foundational, preliminary work completed by Alberta Health Development of a joint strategy to meet the needs for palliative oncology care (CancerCare Action Plan, 2012)The development of a Provincial End-of-life Strategy represents a joint collaboration between theCancer Strategic Clinical Network (SCN), Seniors SCN and the division of Seniors Health, andPrimary and Community Care. The work was vetted through a provincial PEOLC Steering Committeeconsisting of experts in PEOLC across the province. Additionally, patient and family representativeswere consulted and provided feedback for this document through specific focus groups and advisorycommittee engagements, which clearly identified the need for a more public-facing companiondocument.PEOLC is a “specialized” interprofessional approach to care for children and adults with serious lifelimiting illnesses, including cancer, chronic diseases and frailty. It requires targeted training,programs, resources and the tools necessary to provide quality care. For this reason, acomprehensive strategy that encompasses all of the contributing elements that make PEOLC adistinct practice is needed to ensure that evidence-informed best practices and services areperformed and available for all Albertans.We believe that independent evolution of palliative programs across the province, a lack of provincialco-ordinated policies, standards and knowledge-informed guidelines and the absence of performancemeasurements represents a gap and opportunity to continually improve care and outcomes forpatients and families. As a result, this document describes a strategic and co-ordinated plan towardthe development of a common population-based provincial program for policy formation, financingand delivery of palliative care services to dying Albertans and their caregivers.This cross-collaborative effort and consensus building exercise takes into account best practices thathave been developed across English speaking and developed countries. A jurisdictional systematicreview and synthesis of policy and operational documents across the globe was accomplished at theNational, Provincial or Territorial, and regional levels of health governance. Both the organization andcontent of this framework have been informed through a review and synthesis of best practices inAlberta, Canada, United Kingdom, Ireland, United States, New Zealand and Australia. This reviewfacilitated the assembly of this document with the aims of comprehensiveness and timeliness. A totalof 86 documents were identified (see Appendix E and Bibliography for details).Alberta Health Services Palliative and End-of-life Care Provincial Framework6

3. VisionThis Alberta PEOLC Provincial Framework defines the strategic direction and overarching principlesto set the foundation for provincial program development. The provincial program will be informed bybest available evidence and research, be patient and family-centred (5-9), culturally sensitive andcreated with a sustainable focus (5-9). Appropriate providers will promote, co-ordinate and deliverintegrated services that are designed to meet patient needs and their caregivers and/or families (1012).The overall goal for the development of a provincial PEOLC program is for all Albertans to haveequitable and timely access to high quality interdisciplinary PEOLC services regardless of life-limitingillness or geography (13-16). While identical PEOLC services will not be provided in all settings ofcare, access to a PEOLC team, care guidelines and services will be available to meet the PEOLCneeds of all Albertans."You matter because you are you. You matter to thelast moment of your life, and we will do all we can,not only to help you die peacefully, but also to liveuntil you die."- Dame Cicely SaundersAlberta Health Services Palliative and End-of-Life Care Provincial Framework7

4. Values, Norms, Culture and Belief4.1. ValuesPEOLC is an approach to care that not only addresses the physical experience of illness andtreatment, but also focuses on psychological, spiritual and social domains (17-19). As such, it isimperative that not only principles are articulated, but also the values we hold as a community areoutlined. Values are fundamental beliefs on which practice is based (8;20).The following comprises the values expressed within the Canadian Hospice Palliative CareAssociation (CHPCA) national Norms of Practice (6;7;12;20):1. Autonomy: Each person is an autonomous and unique individual. Care is guided byquality of life as defined by the individual. Care is only provided when the person andfamily are prepared to accept it.2. Self-Actualization: Dying is part of living, and both living and dying provide opportunitiesfor personal growth and self-actualization.3. Dignity: Caregivers enter into a therapeutic relationship with patients and families basedon dignity and integrity.4. Community: A unified response to suffering strengthens communities.4.2. Norms, Culture and Beliefs“How much more empowering to believe the system was walking with you, attending to howyou defined quality of life given your age and stage of life, and responding with a care planthat realistically reflected quality of life. Quality of life is not just about the number of breathswe take, but of the quality and meaning of ALL these moments” (2).A norm is a statement of common or average practice and is thought to be less rigid than a standard(8;20). Patients have the right to expect caregiver services that are respectful of what providesmeaning to people’s lives, their values, culture, beliefs and religious practices (7;12;19;21).Numerous studies devoted to how understanding culture is relevant to death and dying found thatcommunication was the greatest barrier between the health-care provider and the patient and familyduring end-of-life care (22-24).A provider needs to learn about, consider and respect the patient and family’s perspective on thefollowing (25): death and dyinghealth and sufferinghospice and palliative care serviceswestern health-care practicesawareness of practices and norms from other culturescomplementary and alternative modalities/practicesthe role of spiritual and religious beliefs and practicethe role of the family, including who is considered part of the familyeffective communication (such as the need for translation services or only using certainwords that are acceptable when discussing illness and dying)their role in problem-solving and decision-makingAlberta Health Services Palliative and End-of-Life Care Provincial Framework8

5. PrinciplesA principle can be defined as a fundamental truth (8;20). The PEOLC Provincial Steering Committeecompiled and developed the following principles for patients and families as a foundational process inproviding PEOLC in Alberta:1. Patient and Family-Centred: It is important that patients and families are placed at the centreof their care to foster participation and collaboration. They will be empowered to make informedchoices, and their needs, culture, values, religion, language and preferences are respected andhonoured. The patient and family’s capacity to cope will be recognized, which will allow a flexibleapproach to care (6;7;12;13;20;26-31).2. Equitable and Accessible: All Albertans should have equitable and timely access to qualityinterdisciplinary PEOLC services despite illness or geography (13-16). It is not the intention thatthe same services will necessarily be provided in all settings, but that the access to expertise willbe equitable across Alberta. Timely access to PEOLC services and programs will be facilitated bysystem processes for patients and providers at all levels of health care. (6;12;13;20;29-32).3. Collaborative and Integrated Team Service Delivery: In order to meet the individual needsof patients and families, comprehensive interdisciplinary teams with varying skills and knowledgeare required to safely and effectively care for Albertans who are palliative or are at the end of life.The systems of care, including patients and families, providers, policy makers, educators andorganizations that can influence programming need to share information about experiences andpractices that promote the best possible outcomes for patients and families (6;7;12;13;20;26-31).4. Communication and Information Sharing: There is a need for improved structured options,including information technology for knowledge transfer at all levels (patient and family, servicedelivery and system) and the use of common tools, language and utilization of the mostappropriate documentation to support seamless transitions of patients, to convey appropriateinformation, and to safely manage patient and family issues (8;11;13;20;33-35).5. Safe, Ethical and Quality Care: Comprehensive assessments by adequately skilledprofessionals and providers are at the heart of quality and ethical care delivery. The provision ofcare that is appropriate to all domains, including physical, psychological, social and spiritualrequires knowledge and tools related to assessment in these areas. Practice that promotesconsistency, co-ordinated activities and collaborative approaches with minimal duplication willfoster best outcomes (6;7;12;13;20;29-31).6. Sustainable and Accountable: Adequate and appropriate resources will be available forPEOLC programs and services for both cancer and non-cancer patients, their families and theirhealth-care providers with the goal of providing the right care at the right place at the right time. Amixture of structure, process and outcome indicators established for PEOLC services are neededto measure symptom improvement, accessibility of services and equitable distribution of servicesacross Alberta (6;7;12;13;20;26;28;30;32).7. Governance and Administration: Clearly defined governance and administration models arerequired to influence accountability and to support the development of PEOLC programs. Exploringpalliative care from a public health, health promotion perspective and aligning palliative care with apopulation needs approach is important for future planning. Broad-based governance includescommunity representatives, caregivers, service providers, patients and families (32).8. Research, Education and Advocacy: High quality PEOLC that is supported by the bestavailable evidence positively impacts quality of life. Continued learning and education should worktoward information, research and advocacy for the development and maintenance of public policy,palliative care standards and resources to improve the delivery of palliative care. Clearly definedprograms and activities will help support providers and improve patient outcomes (69;12;14;17;20;26;33;35;36).Alberta Health Services Palliative and End-of-Life Care Provincial Framework9

6. Definitions6.1. Palliative and End-of-life Care Services: PhilosophicalDefinitionThe following philosophical definition was guided and endorsed by the PEOLC Provincial SteeringCommittee to describe both adult and pediatric PEOLC within Alberta.PEOLC is both a philosophy and an approach to care that enables all individuals with alife-limiting and/or life-threatening illness to receive integrated and co-ordinated careacross the continuum. This care incorporates patient and family values, preferencesand goals of care, and spans the disease process from early diagnosis to end of life,including bereavement (5-7;37;38).Palliative care aims to improve the quality of life for patients and families facing theproblems associated with a life-limiting illness through the prevention and relief ofsuffering by means of early identification, comprehensive interdisciplinary assessmentsand appropriate interventions (6;12;14;16;20;36;39-43).Throughout the continuum ofPEOLC, health-care teams utilizean interdisciplinary approach tomeet the individualized needs ofpatients, their families and/orcaregivers. The interdisciplinaryteamaddressesphysical,emotional, spiritual, practical andsocial concerns that arise withadvanced illness for individuals atall ages and developmental stagesof life (5;7;9;36;37;39;44).End-of-life-care is care provided topatients and their families whenthey are approaching a period oftime closer to death, which may beexemplified by an intensification ofinter-disciplinary services and assessments such as anticipatory grief support, and pain andsymptom management (13;18;37;39;40).The above diagram describes PEOLC as a continuum of care from the time of diagnosis of a lifelimiting illness through to the time of death and into bereavement. It demonstrates that a palliativeapproach to care can occur simultaneously with a curative approach or during treatment (9;45).There is acknowledgement of the difficulty in dealing with life-limiting non-oncological diseases withpoorly defined disease trajectories. There is a need to have education for providers who care forthese patients and have better information for patients and families in the later stages of thesediseases. There is also increasing recognition for the need to embed palliative and end-of-lifephilosophy and principles in the management of all life-limiting diseases, including, but not limited tochronic disease, frailty and cancer illness trajectories, including vulnerable populations. The benefitsfor these individuals are numerous, including earlier attachment to services and expertise that canaid in planning for PEOLC and improve troubling symptoms.Alberta Health Services Palliative and End-of-Life Care Provincial Framework10

6.2. Palliative and End-of-Life-Care Services AdministrativeDefinition (16)Administratively, PEOLC can be accessed via three levels of care for patients and families: primary,secondary and tertiary. Primary level care is foundational and needs to be developed and supportedto improve PEOLC in Alberta. Access to a secondary level of palliative-trained providers who supportprimary care providers may be done either through a face-to-face meeting or via telephone or email.Primary LevelPEOLC is provided in partnership with patients and families by primary care interdisciplinary teamswho have fundamental knowledge, skills and competencies in palliative care (5;36;37;39;43;46) and: is available in every care setting, including palliative designated care areas and involves primary careproviders who are able to identify, refer and provide care based on the core competencies of palliativecare as described by the CHPCA; includes interdisciplinary health-care teams that provide direct and ongoing PEOLC for individuals andtheir family by addressing their physical, emotional, social, practical, cultural and spiritual needs, andrespecting their personal autonomy with dignity and compassion; provides clinical management and care co-ordination, including assessments, interventions, referralsand triage using a palliative approach for patients within the level of expertise of the primary careteam; utilizes and accesses specialized palliative services (both secondary and/or tertiary level providers)through a consultation process to support palliative care patients, their families and/or caregivers.Secondary LevelPEOLC consultation and advice is provided by an interdisciplinary palliative care team member(s) toprimary care providers (5;37;39;40) and: is accessible in home and all other settings of care, including hospice 24 hours a day, 7 days a week(virtual and/or in-person); is care that is delivered by interdisciplinary health-care providers with advanced training and expertisein managing pain and other symptoms, including psychosocial and spiritual support (these providerscan be consulted for advice and information, and provide mentorship for primary care providers); provides a flexible array of consultants (virtual and/or in-person) and shared palliative care support forpatients and families whose needs exceed the capability of primary care providers; ensures that adequate assessment and management of symptoms, psychological distress, practicaland financial issues, and spiritual needs are incorporated into comprehensive care for the patient andfamily.Tertiary LevelPEOLC is provided for patients and families in a tertiary health-care setting by an interdisciplinarypalliative care team (8;37;40;43) and: provides a level of service for patients who require specialized, frequent and skilled assessments andinterventions. In addition, patients may require diagnostic tests and/or invasive procedures, and/orhave significant issues leading to a degree of complexity best managed in this tertiary setting; provides an acute care setting with appropriate tertiary resources; includes experts in PEOLC care that provide direct care for patients with complex PEOLC issues; provides formal and informal expert palliative care consultation and support (educate and train) tosecondary experts and primary care providers; includes experts that conduct research and develop advocacy strategies that advances approaches toPEOLC.Comprehensive integrated palliative care programs in Alberta will provide secondary and tertiarylevel care to support primary level health-care providers.Alberta Health Services Palliative and End-of-Life Care Provincial Framework11

7. Alberta’s Palliative and End-of-Life Care Overview7.1. Historical DevelopmentNumerous key developments have occurred in Alberta since the early 1980s, resulting ininternationally recognized and respected service delivery models

Alberta Health Services Palliative and End-of-life Care Provincial Framework 3 This Palliative and End-of-Life Care (PEOLC) Provincial Framework has been written by experts in PEOLC across Alberta. The primary audience for this document is PEOLC interdisciplinary team providers, policy makers and service administrators.

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