Advancing Palliative And End-of Life Care In Alberta

INTRODUCTIONAlbertans are living longer than everbeforei. Many individuals suffering fromsevere chronic illnesses and life-limitingconditions have longer lifespans thanthose in past generationsii.be improved, and what additional services should beestablished to support the four platform commitments. Thisreview did not assess the structure of PEOLC service delivery,including but not limited to funding mechanisms, healthworkforce, physician compensation and other operationalaspects.Such conditions and their treatments negatively impact qualityof life despite advancements in medical science andtechnology. Albertans with life-limiting diseases would benefitfrom the palliative approach to care early on in their diseasetrajectory as well as accessing and receiving timely andquality PEOLC.Between October 2020 and May 2021, more than 35 virtualmeetings with approximately 100 participants were held withPEOLC groups across Alberta (Appendix 1). The participantswere asked to assess the delivery of services in Alberta,identify gaps and provide recommendations. They shared awealth of experience in receiving and providing PEOLC inAlberta.To anticipate these evolving needs, AHS developed thePalliative and End-of-Life Care Alberta Provincial Framework(2014). The framework was developed to help address gapsin programs and services where they existed across theprovince and to increase access to quality PEOLC regardlessof geography. There were 36 initiatives recommended in theframework to help fill these needs and improve outcomes forthose with life-limiting illnesses and better support theirfamilies and caregivers. To date 21 of the 36 initiatives havebeen completed. In addition, an addendum to this frameworkwas published in April 2021. The PEOLC Alberta ProvincialFramework Addendum outlines what Alberta has achievedsince the development of the framework in 2014, where weare today (inclusive of a current state analysis), gaps,challenges, and recommendations for future work.In 2019, the Government of Alberta committed to investing 20 million over four years to: continue the shift from hospital to community-basedhome and hospice care;establish and implement palliative-care education,training, and standards for health professionals;develop effective caregiver supports to help patientsremain in their homes and community; andraise public awareness of palliative care and knowledgeof how and when to access it.In September 2020, former Minister of Health, Tyler Shandro,appointed MLA Dan Williams (Peace River) to engagePEOLC citizens and interest groups in Alberta. Theseindividuals included patients, families, frontline serviceproviders, researchers, and community organizations such ashospice societies. MLA Williams was tasked to look at whataspects of PEOLC services were working well, which shouldAdvancing Palliative and End-of-Life Care in Alberta Final ReportClassification: Public(n 35)Researchers &EducatorsCommunity GroupsService Providers(n 38)(n 52 )Albertans(n 7)Figure 1. Summary of stakeholder groups contacted by typeThe information heard serves as the basis for this report. Thenumerous comments and recommendations all had anunderlying thread: the palliative approach to care can andshould be integrated into care for every individual with a lifelimiting condition. Additionally, it was clear from the feedbackreceived that planning and implementation must beconstructed around two focal points for Albertans to benefitfully from PEOLC: It should start as early as possible, close to the initialdiagnosis of a life-limiting illness; andA primary goal should be to keep individuals in theirhomes and their communities, wherever and wheneverpossible.7

BACKGROUNDPEOLC is a philosophy and approachto care that enables all individuals witha life-limiting or life-threatening illnessto receive integrated and coordinatedcare across the continuum.This care incorporates patient and family values, preferencesand goals of care, and spans the disease process from earlydiagnosis to end-of-life, including bereavementiii. Engagingpalliative consult teams early in the disease trajectory, canassist with pain and symptom management, which improvesquality of life and the patient experience. To clarify, thepurpose of palliative care is to reduce suffering, notintentionally end life. The provision of Medical Assistance inDying (MAID) is a practice separate and distinct from thepalliative approach to care.PEOLC is best provided in a person’s setting of choice,whether at home or in a hospice, a continuing care facility(designated supportive living or long-term care) or a hospital.As long as interdisciplinary supports are available andaccessed, an individual’s home is often the preferred choicefor PEOLC patients and improves the patient-familyexperience. However, families are often the primarycaregivers, particularly in the case of children with lifethreatening conditions. This unexpected role can be a heavyburden.“The palliative approach”iv to care focuses on the person andfamily, and their quality of life throughout the illness trajectory,in advance of and not just at the end-of-life. The palliativeapproach to care can occur simultaneously with diseasedirected treatment.This includes supporting and managing: illness comprehension and copingsymptoms and functional statusadvance care planning and the patient’s preferredmethod of decision makingcoordination of caresupport for family/caregivers“Palliative care” aims to improve the quality of life for patientsand their families facing the problems associated with a lifelimiting illness through the prevention and relief of suffering bymeans of early identification, comprehensive interdisciplinaryassessments, and appropriate interventionsv.Advancing Palliative and End-of-Life Care in Alberta Final ReportClassification: Public“End-of-life care” is provided to patients and their familieswhen they are approaching a period of time closer to death,which may be exemplified by an intensification of interdisciplinary services and assessments such as anticipatorygrief support, and pain and symptom managementvi. Althoughmany patients are admitted to hospital or intensive care unitstowards the end of their life, most end-of-life patients—up to70 per cent, according to the Canadian Academy of HealthSciences—prefer less aggressive treatment and a greaterfocus on comfort.“Hospice care” is a specialized service that provides 24/7facility-based care to those who are approaching end-of-lifeand whose needs can best be met in this location (based onassessed needs, patient preferences, and available bedcapacity). It is provided in designated/supported communityspaces, which may include a) stand-alone community hospicebeds or b) designated/supported end-of-life care beds in longterm care, designated supportive living, or other health carefacilities located in the community. Hospice care is providedto both the adult and pediatric populations and may includerespitevii.Historically in Canada, palliative care developed as a way tomeet local needs. It grew out of the increasing numbers ofcancer cases that occurred in the 1970s, which wereaddressed by the formation of palliative care units within acutecare hospitals for patients requiring end-of-life care.viii Thus inAlberta, as in Canada generally, palliative care originated inacute care settings. Then, between 1988 and 1998, Albertanssaw improvements in access to adult PEOLC and home caresupport services. As a result, acute care beds were utilizedless frequently by end-of-life cancer patients in Calgary andEdmonton. In 1995 and 1996, Edmonton and Calgaryorganized multiple locations for integrated adult palliative-careprograms, which gave many Albertans improved options forcare and offered more support to health care providers.Hospice and palliative care units were recognized as essentialcomponents of this comprehensive, integrated palliative caremodel that existed to a varying extent across Alberta. Sincethat time there has been significant growth in the types ofPEOLC services and resources that are available acrossAlberta for patients and their families. In particular, there hasbeen increased access to quality PEOLC in North, Central,and South Zone, as well as pediatric programs and services.8

Currently, Albertans can access PEOLC services in theirhome, designated acute care beds within hospitals, tertiarybeds in Edmonton, Calgary and Red Deer, and a facilitybased continuing care setting (supportive living, designatedsupportive living or long-term care). In addition, Albertans canaccess residential stand-alone hospice beds, as well ashospice beds integrated into facility-based continuing caresettings. Services are provided by a range of health careproviders including, but not limited to, palliative consult teams(inclusive of palliative care physicians, clinical nursespecialists, palliative nurses) regulated nurses, health careaides, paramedics, social workers and other professionals.Table 1: Publicly FundedPalliative Care Beds by ZoneCommunity DesignatedAs the provincial health authority, AHS manages access to allpublicly funded palliative services and acute and communitypalliative beds for pediatric and adult patients living in fivegeographically defined administrative zones: North,Edmonton, Central, Calgary, and South. The urban centres inCalgary and Edmonton are recognized as having the mostestablished, integrated and comprehensive PEOLCprograms, whereas the types of services and level ofintegration of services vary from zone to zone in rural areas.Since the implementation of provincial PEOLC initiatives,North, Central and South Zones have increased theintegration and comprehensiveness of PEOLC programs. Asof March 31, 2021, there were 126 publicly funded acutedesignated palliative care beds and 257 publicly fundedcommunity designated palliative beds in Albertaix. Anadditional 12 privately funded hospice beds are located inEdmonton. These community-designated palliative beds arelocated in either facility-based continuing care settings orstand-alone hospices. A breakdown of publicly-fundedcommunity designated beds by zone is provided in Table 1.Community designated PEOLC beds and stand-alonehospice beds offer specialized end-of-life care to individualsin their last weeks to months of life. The majority of hospicesare operated by AHS or via contract by non-profit hospicesocieties. Of the current 257 publicly funded communitydesignated palliative care beds, 58 are located in five standalone hospices. Unlike the development and operation ofacute and facility-based continuing care spaces, stand-alonehospices are grassroots in nature and obtain the majority ofcapital, and a portion of operational funding, throughcommunity fundraising. Additionally, some communityhospice societies, partner with AHS and local facility-basedcontinuing care, to fund co-located hospice suites, as is thecase with the Olds District Hospice Society, AHS andSeasons Encore Olds.ZoneNumber of spacesNorth zone13Edmonton zone85Central zone18Calgary zone121South zone20Source: Alberta Health Services 2021Palliative CareApplies to anyone living withor at-risk of developing a lifelimiting illnessCan occur for months toyearsIntroduction to palliative careInitiate goals of carediscussionsFocus on symptommanagement & quality of lifeEnd-of-Life CareApplies when underlyingcondition is irreversibleCan occur for weeks tomonthsNew baseline showsdeclining functionGoals of care may fluctuateHospice CareApplies when imminentlydyingFocus is comfort careHospice Care OrdersFigure 2: Spectrum of PEOLC in AlbertaAdvancing Palliative and End-of-Life Care in Alberta Final ReportClassification: Public9

CHALLENGES AND EMERGING ISSUES IN PEOLCDespite Alberta’s robust approach toPEOLC, several systemic challengesand emerging issues will impact thedelivery of services in the immediateand medium-term.Demographic ShiftsAlberta’s population grew to 4.4 million in 2020, up from 3.6million in 2011, a 22 per cent increase over nine years. Thistrend is expected to continue as the population grows andpeople live longer. It is projected that individuals aged 65years and above will represent 20 per cent of Alberta’s totalpopulation by 2046, just 25 years from nowx. A 2020 studyxiprojects that by 2046 the average age of an Albertan will be41.5 years, up from 38.3 today. Life expectancy will increaseby 3.4 years to 87 years for women and by 4.7 years to 83.7years for men. It is projected that over the next 25 years, theshare of the population 80 years or older will more thandouble, reaching as much as 7 per cent of the total Albertanpopulation.Table 2: Projected changes in demographics in AlbertaTotal populationAverage ageLife expectancy (f)Life expectancy (m)Total 80 years202020464.4 million38.3 years83.6 years79 years136,0006.3 million41.5 years87.0 years83.7 years441,000Source: Population Projects: Alberta and Census Divisions, 2020—2046.Treasury Board and Finance. 2021Each year, over 270,000 Canadians, including 27,000Albertans, die; 90 per cent of these deaths are caused by achronic condition such as cancer, heart disease, organ failure,dementia or frailty. As the adoption of the palliative approachto care increases, more non-cancer patients will use suchservices. Currently, cancer’s trajectory and the relationshipbetween palliative care and cancer care are relatively wellunderstood. However, learning how to support non-cancerpatients better and ensure appropriate education and trainingfor the health providers who care for them will be challenging.By 2036, the annual number of deaths in Canada is projectedto increase to 425,000. According to the Canadian HospicePalliative Care Association, only 16 to 30 per cent ofCanadians currently have access to or receive PEOLCservices when they are dying. Despite Canadians’ wishes todie at home, 60 per cent die in hospitalsxii. The need forPEOLC services will only continue to grow, and it is necessaryto plan for increasing services and providers in Alberta.Advancing Palliative and End-of-Life Care in Alberta Final ReportClassification: PublicPopulations of InterestIn 2014, cancer-related deaths accounted for 85 per cent ofpalliative care services. A growing and ageing population willinevitably increase the number of new cancer cases and thenumbers of Albertans living with cancer. According to AHSxiii,in 2018 there were around 20,068 new cancer cases inAlberta, accounting for 0.4 per cent of the total population atthe time. A 2007 study by the Alberta Cancer Boardxivestimated that one in two Albertans will develop cancer duringtheir lifetime and that one in four will die from it. New cases ofinvasive cancer in Albertans are estimated to reach 27,640 ayear by 2030, almost triple the 11,283 new patients diagnosedin 2000xv.While individuals with cancer represent the most significantcohort of PEOLC patients, people of all ages andbackgrounds can be affected by life-limiting or life-threateningillnesses. Two emerging populations of interest include:Pediatric PopulationsTen to 15 of every 10,000 children (under 18) in Alberta (900to 1400 children) require pediatric palliative carexvi. Lifethreatening conditions in children are rare; however, they arevaried and often complex. Additionally, palliative antenatalcare may be necessary for pregnant women whose fetuseshave specific illnesses or conditions.Indigenous PopulationsThe 2016 census by Statistics Canada indicates that 14 percent of Canada’s First Nations population lives in Alberta,almost 137,000 people. Indigenous people experiencebarriers in accessing high-quality, culturally appropriate care.Shorter life spans due to health disparities and a highincidence of chronic-disease related deaths emphasize thevalue of access to PEOLC for Indigenous communities.However, many Indigenous communities are in rural settings,with little access to health centres adequately equipped toadminister PEOLC services and a shortage of servicesincorporating Indigenous cultural practices. This leads toIndigenous individuals not necessarily being offered PEOLCor its uptake being low.10

Cost of Delaying the Palliative Approach toCarePalliative care can save between 7,000 and 8,000 per patient compared toacute care by reducing: the length of hospital stays and movingpatients to lower-cost home care;intensive care unit admissions;unnecessary diagnostic testing; andinappropriate disease targeting interventions.Source: Canadian Society of Palliative Care Physicians. Economics ofPalliative Care. 2017.To meet the needs of a growing and ageing population andmitigate higher costs for Alberta’s health care system, it isnecessary to strategically plan health care spending to usefinite financial resources in the most cost-effective way.Public PerceptionA 2016 IPSOS studyxx showed that only 50 per cent ofCanadians know about palliative care. Moreover, there can bea perception among members of the public that participatingin palliative care or discussions around it means that a patientis losing hope. A rejection of the idea of “imminent death”leads many individuals and their families to ignore or pushback on palliative and end-of-life conversations. Furthermore,this study identified that the distinction between palliative careand end-of-life care is not always clear to the public. Thisunderstandable confusion can be heightened by clinicaldefinitions of palliative care that define it as beginning whenan individual only has a few months left to live. Another 2016studyxxi found that such perceptions and misconceptions werecommon. Study participants were not fully aware of whatpalliative care provided or associated it with being bed-riddenand dying. Consequently, they rejected it, as they did notidentify themselves as being at end-of-life.Only half of Canadians are awarethat PEOLC is available as ahealth service.Many recent US and Canadianxvii studies on the healthsystem’s aggregate costs have concluded that palliative careis an effective way of using health care resources, reducingthe cost of caring for people with life-limiting illnesses andfreeing up much-needed hospital beds.The Canadian Hospice Palliative Care Association cited anOntario study thatxviii estimated that if just 10 per cent of endof-life patients in acute care were transitioned to home care, 9 million a year could be available for reinvestment into thehealth system. In addition, a study of seven US hospitals xixfound that instituting palliative care services reduced the costof admissions and re-admissions. Overall cost avoidance was1.5 times greater than the cost of administering palliative careservices.Between 2014, when the provincial PEOLC framework wasintroduced in Alberta, and January 31, 2021, the number ofdesignated palliative care beds in acute care (hospitals) hasdecreased from 133 to 126. Over the same time period,publicly funded community designated palliative care bedsincreased by 35 to 257, due to a shift towards enhancing carein the community for PEOLC patients. Although this isprogress, moving individuals from health care facilities tohome care shifts some of the cost of care to families orcaregivers through loss of income, equipment and supplypurchases and missed financial opportunities. These impactsmust be taken into account and supports for caregivers mustbe included within the provincial PEOLC framework.COVID-19Lastly, COVID-19 continues to present an unprecedentedchallenge to Alberta’s health care system and PEOLC. At thebeginning of the pandemic, challenging restrictions on visitingloved ones at the end-of-life unequivocally and negativelyimpacted the health and well-being of patients, residents andtheir families. Feedback received during Chief Medical Officerof Health telephone town halls, from PEOLC operationalleadership and hospices as well as feedback from familiesand residents, indicated the need to ease

The Advancing Palliative and End-of-Life Care in Alberta final report captures Albertans' feedback and recommendations. This report is the culmination of the work led by MLA Williams that will help to strengthen palliative and end-of-life care delivery in our province. I am grateful for his support and commitment to this initiative.