C O N S E N S U S S T A T E M E N Tof the Palliative Care Matters Lay Panel

Ottawa Canada | November 9, 2016

Palliative Care Matters: How Canada’sHealth System Needs to Change

ORGANIZED BY:

IN PARTNERSHIP WITH:

CANADA

CSPCPCanadian Society of

Palliative Care Physicians

SCMSPSociété canadienne des médecins de soins palliatifs

1

“When the efficacy of curative medicine has run its course,quality medical care becomes not so much a matter of whatyou do to the patient as a matter of who you are willing tobe with that person. Such profoundly vulnerable andpersonal relationships are not only acts of transformativehealing compassion, but acts of courage as well. Thecourage to abandon the security and protection of familiarroles and routines, the clinical postures and personas weadopt to effect an insulating distance. The courage toultimately surrender the struggle to intervene to make lifeconform to our own wishes and let the current of the illnesscarry us where it will. And the courage to abide attentivelyin the kinship of silence when words are too weak orintrusive or disruptive to be spoken.

continued

Jim Mulcahy opened thePalliative Care MattersConsensus DevelopmentConference. His profoundwords on the meaning of carein the face of illness and deathbrought forward the patientand caregiver voice so criticalto the deliberations. Here isthe essence of what he said:

Inspiration

2

Inspiration continued

“The hardest thing is to remain in that kinship of silence. Wewant to do something or say something, rather than toremain in the intensity of those moments. But that is the verytime we cannot abandon the suffering. This state ofvulnerable kinship is the still point in the turning world ofpalliative care. It is the lived acknowledgement andtherapeutic significance of an authentic, personal,compassionate relationship between the caregiver and thepatient. A relationship of trust, commitment andtenderness – another word we have lost in our medicallexicon – between the caregiver and the patient.

“It is a gift, a blessing given and not without cost by thecaregiver to the patient—the gift of community, the gift ofconsolation, meaning and companionship. A gift whichennobles the caregiver and the patient in equal measure.

“I’m going to repeat that because it is so important. I getso sick and tired of tired people talking about theprofessions in terms that deny the possibility that it justmight be an act of nobility to dedicate your life to caringfor people.

“My wife is not a health care consumer. She is a personand she has a name. She is not just a pathology. Andpeople who care for her genuinely in my estimation arenoble. It is a gift that ennobles the caregiver, as well as thepatient, in equal measure. A gift given until we are nomore. It is the ancient, archetypal expression of humansolidarity that one should care for another. And it is themeasure of what is best in us as people and as a country.”

Born and raised in Halifax,Jim Mulcahy taught English anddrama in in Antigonish, NovaScotia public schools for overthirty years. Forced to retireafter his second cancerdiagnosis, Mr. Mulcahy becameactively engaged as a patientadvocate serving on local,provincial, and nationalhealthcare committees. He hasan honourary doctorate fromSt. Francis Xavier University forhis contributions as educatorand patient advocate. For thepast twelve years Mr. Mulcahyhas been his wife Sarah'sprimary caregiver. Sarah is inthe latter stages of Huntington'sand three of their four adultchildren have the same disease.Last year, their three year oldgrandchild was diagnosed withan incurable life threateningblood disorder.

3

Table of Contents

1 Inspiration

4 Acknowledgments

6 BackgroundAbout this Consensus StatementThe Consensus Development Conference ModelChoosing the QuestionsPatients as ExpertsDisclosure Statement

8 Lay Panel Chair’s Introduction10 Question One: What are the essential elements of an integrated and coordinated palliative care

program that will help to improve access to quality palliative care in Canada?

12 Question Two: Do public health awareness campaigns effectively improve the awareness andquality of palliative care?

14 Question Three: What are the essential components of quality palliative home care servicesfor all Canadians?

16 Question Four A: What resources are required to ensure adequate education, training andmentorship for caregivers of Canadians experiencing a life-limiting illness?

17 Questions Four B: What resources are required to ensure adequate education, training andmentorship for nurses and health care assistants who provide palliative care?

18 Question Four C: What resources are required to improve education, training and mentorshipfor physicians who provide palliative care?

20 Question Five: What have strategic frameworks and plans accomplished for palliativecare when adopted by countries?

22 Question Six: Does measuring indicators that address desired outcomes,including patient/family reported outcomes and experience, improve thequality of and access to palliative care?

24 Conclusion

References

25 Contributors

4

The Consensus Development Conference is partof a larger initiative, 0, spearheaded by CovenantHealth through its Palliative Institute. PalliativeCare Matters is a direct expression of CovenantHealth’s belief in a future where every Canadianhas access to quality palliative care and allcaregivers are supported with the knowledge,expertise and resources they need.

We want to thank all Canadians. Palliative CareMatters is giving voice to the many people in ourcountry who need palliative care. The Initiativebegan with listening to Canadians through focusgroups and an online Ipsos survey where over1500 Canadians shared their views on a palliativecare system for Canada. It continued with the LayPanel members, chosen to represent the views ofbroad groups of Canadians.

Palliative Care Matters is co-chaired by KarenMacmillan, Senior Operating Officer at CovenantHealth and Fred Horne, former Alberta healthminister and health policy advisor. Joining them arenational stakeholder organizations including:Accreditation Canada International, CanadianHospice and Palliative Care Association, CanadianMedical Association, Canadian Society of PalliativeCare Physicians, Canadian Partnership AgainstCancer, ALS Society of Canada, Catholic HealthSponsors of Ontario, Canadian Foundation forHealthcare Improvement, Health Canada, SaintElizabeth Health Care, Canadian NursesAssociation, Alberta Health Services and theCanadian Frailty Network.

Don Newman, C.M., led a panel of Canadiansfrom all walks of life and regions of Canada. ThisLay Panel reviewed the evidence over a one-month period prior to the conference, thendeliberated the issues and brought forthrecommendations on how quality palliative careshould be provided across the country at theconference. Their work was invaluable; if we aregoing to improve the system, we must listenclosely to the public, patients and families.

Conference evidence was gathered under theguidance of Dr. Konrad Fassbender, AssistantProfessor, University of Alberta Faculty ofMedicine and Dentistry and Scientific Director,Covenant Health Palliative Institute, and CarleenBrenneis, Director, Covenant Health PalliativeInstitute. They were supported in this work by theCanadian Reference Working Group, whodetermined the questions to be deliberated bythe Lay Panel, and the Expert Panel who did theall-important work of examining the scientificevidence for each question.

BUKSA is the Project Manager for the threephase initiative and has assembled a team ofprofessional communicators, writers, projectmanagers and experts in logistics to organize anddeliver on Covenant Health’s vision for PalliativeCare Matters.

Acknowledgments

5

Covenant Health is grateful for the earlycontributions of the Canadian Foundation forHealthcare Improvement for supporting theoverall initiative, the Canadian Partnership AgainstCancer for funding the Ipsos research survey andHealth Canada for supporting the preparation ofThe Conference Board of Canada Final Report.Other financial sponsors include the CanadianMedical Association, Accreditation CanadaInternational, Canadian Nurses Association,Catholic Health Alliance of Canada, CatholicHealth Corporation of Manitoba, St. Joseph’sHealth System, St. Joseph’s Health Care Society,St. Joseph’s General Hospital, Canadian VirtualHospice, Providence Healthcare, St. Joseph’sHealth Centre, and Saint Elizabeth.

Covenant Health is Canada’s largest Catholichealth care organization, providingcompassionate, quality care to people of all faithsand traditions as a key partner in Alberta’sintegrated health system. As a major provider ofpalliative care, Covenant Health established thePalliative Institute which is committed to relievingsuffering for patients and their families.

For further information, visit the Palliative CareMatters website at www.palliativecarematters.ca.

Background

6

About this Consensus StatementThis Consensus Statement was prepared by anindependent 12 member Lay Panel of Canadiansfrom diverse walks of life and regions of the country.This statement reflects their analysis of the views ofCanadians and scientific evidence. It is supported bytheir expertise and lived experience to bring forwardthe collective wisdom of all Canadians regardingpalliative care. Palliative Care Matters will work toensure that their insights and recommendations areheard across Canada and lead to better palliativecare for all.

The Statement was informed by:

l Research papers prepared by a panel of expertsin palliative care,

l Relevant studies and reports assembled by theInitiative’s leadership,

l The focus group research and public opinionsurvey conducted by Ipsos,

l The lived experiences of patients and caregiverswho spoke at the conference,

l The lived experiences of Lay Panel members,

l Through multimedia presentations made possiblethrough the work of the Virtual Hospice,

l Questions and comments from conference andwebcast attendees during open discussionperiods, and

l The private deliberations of the Lay Panel.

The Consensus Development Conference was heldin Ottawa, Ontario and webcast live across Canada

to encourage participation by all Canadians. LayPanel members, audience members and thosewatching the free webcast could ask questions of theexperts, provide comments and answer polls relatedto the topics. On the third day of the conference, theproceedings were simulcast on the Canadian PublicAffairs Channel, including the reading of thisstatement. The success of the webcast is notable. Bythe end of the conference, over 400 unique viewershad accessed the webcast. The sites were fromacross the entire country and the United States. Thewebcast was recorded and archived as a resource.

The resulting recommendations were read aloudby Don Newman, the Lay Panel chair, in an opensession on the closing day of the conference,November 9, 2016. Mr. Newman’s introductorycomments at the session are included with thisConsensus Statement. A news release featuringthis statement was released immediately followingthe conference.

The Consensus DevelopmentConference ModelConsensus development conferences bringtogether citizens, decision-makers and experts toaddress issues of public importance. Theconferences involve a series of experts who deliverscientific evidence on a subject to a Lay Panel ofapproximately 12 people before a public audience.

The Lay Panel hears the evidence and takes it intoconsideration when they develop a consensusstatement in the form of a series ofrecommendations. These are then read to the

experts and audience and are used to develop policygoing forward.

There are five basic steps in the consensusdevelopment conference model, which wereadopted and adapted to the specifics of the PalliativeCare Matters Consensus Development Conference.

1. A series of the most pressing questions related tothe topic are set. These questions for PalliativeCare Matters were determined after a review ofrecommendations made in the last twenty yearsby other reports on palliative care.

2. Scientific experts are assigned the questions. Forthis Initiative, the experts reviewed the evidenceand prepared a short report which was providedto the Lay Panel prior to the conference. Thequestions also formed the basis of the nationalpublic survey conducted by Ipsos on behalf of theInitiative. The Ipsos findings were part of theevidence weighed by the Lay Panel.

3. At the conference, presentations are made to theLay Panel and audience. For Palliative CareMatters, Ipsos and the scientific experts madepresentations to address the questions posed. TheLay Panel and audience, which in this instanceincluded Canadians who participated through thefree live webcast, questioned and soughtclarification from the experts.

4. The Lay Panel reviews the evidence prior to theconference, listens to the evidence at theconference, questions the experts and prepareswritten answers to the questions.

5. On the last day of the conference, the Lay Panelchair reads the consensus statement and takesquestions from the audience. The consensusstatement consists of specific answers to thequestions posed and usually includesrecommendations.

Choosing the QuestionsPalliative Care Matters is building on work done byothers in Canada. The Consensus DevelopmentConference was organized around six questionsgleaned from a review of recommendations made in

Canada on palliative care over many years. Thequestions focus on issues that represent the greatestbarriers to a national system of quality palliative careand align with one or more recommendations fromnational reports on palliative care. The final questionswere determined using a nominal group techniqueundertaken to synthesize the recommendations andreach consensus on areas of focus. This work wasundertaken by Palliative Care Matters with membersof a committee called the Canadian ReferenceWorking Group. Members of the Working Groupwere nominated by Steering Committeeorganizations and included patient representatives.

Patients as ExpertsPalliative Care Matters is built upon the recognitionthat people are experts in their own experiences,feelings and fears, hopes and desires (Kennedy,2003). Canadians come to the experience of lifelimiting illness and end of life with much of theirexperience behind them. The time remaining tothem is extraordinarily valuable and there is little thatis more important than honouring how they wish tolive it. That is why the work of Palliative Care Mattersbegan by asking Canadians what they wanted to seehappen with regard to palliative care. Who theywant caring for them. What that care shouldencompass. Where they want that care provided.This is also why the Lay Panel members come fromdifferent walks of life; palliative care is intenselypersonal and diverse patient and family perspectiveshould always be in the fore.

Disclosure Statement All of the Lay Panel members who participatedin this conference and contributed to the writingof this statement were identified as having nofinancial or scientific conflict of interest.

7

8

Lay Panel Chair’s Introduction

Palliative care matters to allCanadians. As a society,we need to place as muchemphasis on this criticalpart of the life journey aswe do on bringing life intothe world. That meansaddressing the gaps in care

and support which currently exist in our country.

This Consensus Development Conference onpalliative care occurred because people andorganizations across Canada are passionate,compassionate and recognize that we can andmust do better. We would not be here withoutthe leadership of Covenant Health and itsPalliative Institute. As well, this would not be thepan-Canadian initiative it is without the fourteennational organizations who joined in planningand supporting this Initiative, as well as themany other organizations who gave money andtime to the effort.

I also want to acknowledge and thank my fellowLay Panel members for their hard work and wisdom.It has been an honour working with you. It has alsobeen an honour to hear from the experts inpalliative care and public polling. You spend yourlives researching these issues that mean so muchand all of Canada owes a debt of gratitude to youfor your insights and knowledge.

This conference is the second stage of PalliativeCare Matters. The first stage involved listening toCanadians and hearing their views on what theybelieved needed to be in place and how theywanted to be supported in providing care to their

friends and family. It also involved commissioningthe scientific research that, together with views ofCanadians gathered by Ipsos, formed the basis forthe deliberations of the Lay Panel.

The second stage has been about reaching aconsensus on what steps need to be taken toensure that all Canadians have access to qualitypalliative care. It is our hope that the findings andrecommendations in this Consensus Statement willtake hold and, together with all the other goodwork being done in Canada, make a difference inthe lives and deaths of Canadians.

This Consensus Statement, however, is not the endof the Initiative’s work. We need to ensure thatPalliative Care Matters helps catalyze real,substantive change.

That is why The Conference Board of Canada hasbeen tasked with studying the Statement in phasethree. Early in 2017, they will release a reportoutlining policy options and ways that ourrecommendations can be implemented in order tomake better palliative care a reality.

The Lay Panel has listened to national andinternational experts over two days. We spent manyhours in the evenings poring over what we heardand discussing amongst ourselves what it meansand its implications for Canada.

Our task was more than an analysis and weighing ofthe scientific evidence, as important as that is. Weare also here to acknowledge the humandimensions of living our lives to their end. We arehere to speak about what we must do as a caringand compassionate society if we are to improve the

care and support that people needing palliativecare deserve.

We also acknowledge the support needed for thepeople providing care. No matter how deeply welove those we support, being a caregiver is one ofthe most singularly challenging and important taskswe undertake.

We also recognize that the health care providerswho choose this important work need to besupported. We are all human. We all need to helpeach other with the emotional, physical andspiritual elements of caring for people at the endof their lives.

As a Lay Panel, we were limited only by our abilityto absorb and reflect on what we have heard.Members of the audience came up to usindividually and delivered a strong message: Please,be bold. Our work must help make the difference.Too many people are suffering as they die. Toomany of the ones who are left behind aredevastated by the process.

Mindful that the Government of Canada hascommitted $3 billion to home care, includingpalliative care, as part of the current Health Accordnegotiations, our ultimate recommendation is anoverarching one. It is a necessary precursor to allthe other issues that we address in ourrecommendations and it is this:

First and foremost, palliative care must be guaranteedunder the Canada Health Act. Criteria need to beset by governments and the continuum of palliativecare services should be publicly funded. There aremany care providers in the system, includingcommunity organizations, private deliverers andprimary care teams, to name only some. Theirservices should be funded so that all Canadiansrequiring it can access the palliative care they need.

While this is necessary, it isn’t sufficient. We alsohave to examine the provincial and federal socialsupport fabric and ensure that it is robust enough tosupport people as they make difficult decisionsaround caring for the people they love.

Ensuring that the suffering of our fellow citizens isalleviated is at the heart of a civil society. We heardthis clearly at the Consensus DevelopmentConference and deeply know it to be true. It isn’tenough to care; Canada must turn its caring intocommitment that ensures palliative care is a part ofthe Canadian health system and receives theattention and resources it needs.

These are our findings.

Don Newman, Lay Panel Chair

9

10

Question One:

What are the essential elements of an integrated and coordinatedpalliative care program that will help to improve access to qualitypalliative care in Canada?

Integrated palliative care has positive health andsocietal benefits. However, despite two decades ofwork by many organizations and numerous reportsand recommendations, the majority of Canadiansdon’t have access to regional, comprehensive,coordinated and integrated palliative care.

Work needs to be done to involve communities inplanning palliative care and palliative care shouldbe integrated throughout every aspect of the healthcare system. Palliative care is currently delivered inthe context of silos. These must be bridged.

Canada needs to define what integrated palliativecare should look like for the country. The Lay Panelhas developed a definition for an IntegratedPalliative Care Model (IPCM) using the WorldHealth Organization (Ewert et al., 2008) and inSUP-C (van der Eerden et al., 2014) definitions asa starting point:

An integrated palliative care approach improves thequality of life of all Canadians, inclusive of theirfamilies and community, impacted by life-

threatening illness. The goal is to embody a socialmodel of care to support holistic frameworksconsisting of clinical, community and volunteersupport. It aims to achieve quality of life and a well-supported dying process for the person incollaboration with their family and all caregivers.

Key characteristics of the Canadian IntegratedPalliative Care Model (IPCM) should be clearlyunderstood. IPCM is more than a bio-medicalmodel of care. It is a collaborative model thattakes into account the continuum of care andrange of people who need to provide it: friends,families, healthcare professionals includingspecialists, home care providers, primary care,social workers and spiritual care. Social inclusionis an important part of an IPCM.

The IPCM needs to be anchored by and embeddedin the cultural norms of society. It should addresssociety’s perception of death, including the fear ofdeath. It should also encompass the emotional andnon-medical side of care.

My wife is NOT a pathology and she is not a health care consumer. She is a person.– Jim Mulcahy

Communication is key to the successfulimplementation of the IPCM and supportssmooth transitions for patients and families. Itshould be a model sustained and driven throughpublic awareness communications. Canadaneeds to undergo a process where we discusspalliative care openly and share our stories. Weenvision a national palliative care narrativeinitiative. Another key aspect of communicationis information sharing; people providing careneed to be able to communicate with eachother knowing that their information is secure,accessible and consistently delivered.

Not everything we need to understand aboutpalliative care will be the result of clinical research.The IPCM model will need to capture non-quantitative data to inform the IPCM experiencebeyond a bio-medical frame of reference.

Recommendations

1. We recommend to the Government ofCanada and the provincial governmentsthat Canada become a leader in anationally supported Integrated PalliativeCare Model (IPCM) and develop a nationalpalliative care strategy.

2. We recommend that an Integrated PalliativeCare Model (IPCM) be enshrined in theCanada Health Act. IPCM must beaccessible, equitable, portable andadequately resourced.

3 We recommend the creation of an IPCMNational Secretariat to support the longterm sustainability of an IPCM. Thesecretariat will:

l Create a national committee forum,

l Create a source for national messagingin IPCM,

l Create a national place for culturalinteractions,

l Become the consistent link betweenprovinces and the Federal Government,

l Be responsible to create a nationalconversation that captures our stories andhumanizes palliative care, and

l Become a national centre for researchon qualitative, quantitative and non-parametric research.

11

Death, like the Sun, cannot be looked at steadily.– Francois de la Rochefoucald, 1670

12

Question Two:

Do public health awareness campaigns effectively improve theawareness and quality of palliative care?

Awareness campaigns are organisedcommunication activities designed to raiseawareness, induce behaviour change and improvequality outcomes for individuals and populations(Masiulienė, 2015). The implementation of anIntegrated Palliative Care Model under the CanadaHealth Act will require an awareness campaign.Canadians are not fully aware of palliative care andthe majority have not taken steps to manage theirown future care through the use of advance careplans and personal directives.

Public health awareness campaigns requiresignificant funding and not all are effective. IfCanadians are going to become more aware ofpalliative care and advance care planning, thetechniques used to raise awareness and promoteengagement need to be thoughtfully chosen. In theIpsos survey commissioned by Palliative CareMatters, people indicated that they are concernedabout the cost of campaigns, but want to see moreinformation disseminated throughout the healthsystem (91% approval) and this includes informationabout palliative care services and standards.

Despite continuing low awareness levels, the LayPanel acknowledges that much good work hasbeen done by national and regional organizationsto raise awareness. Care needs to be taken toinvolve these organizations so that their learningscan be incorporated into the planning of anational campaign.

Research suggests that effective public awarenesscampaigns about palliative care and advance careplanning should be culturally appropriate andpiloted, target marginalized groups, includeyoung people in the targeted demographics,involve communities, build coalitions and besocially inclusive.

Tools to deliver effective public awarenesscampaigns should include the use of a variety ofcommunication channels in order to reach a rangeof Canadians of all ages and regions. They shouldalso capitalize on the arts and humanities,particularly storytelling.

Palliative care was not giving up, but ratherallowing our child to live while she was alive. – Video testimonial, Canadian Virtual Hospice

13

Features of successful public awarenesscampaigns include:

l The use of clear and concise, easy tounderstand language,

l Networking with stakeholders to draw in theirexpertise, and

l Employing systematic monitoring andevaluation to ensure efficacy. This latter pointwas specifically identified by Canadians in theIpsos survey.

Recommendation

4 We recommend the development of apublic awareness campaign about palliativecare. The campaign should:

l Support the implementation of a nationalpalliative care strategy, including theIntegrated Palliative Care Modelrecommended in question one,

l Be implemented along with the nationalstrategy and start by outlining the nature ofpalliative care, including an emphasis thatpalliative care be woven throughout thehealth care system,

l Encourage people to discuss palliative carewith their health care provider or othermembers of their support networks,including the importance of advance careplanning, and

l Highlight the importance of involving allmembers of Integrated Palliative Care teams,particularly patients and caregivers asexperts in their own right.

Caring is the relationship between caregivers andpatients that regulates the heartbeat of palliative care. – Lay Panel Member

14

Question Three:

What are the essential components of quality palliative home careservices for all Canadians?

Palliative home care should become a standardizedservice across the country. Currently, the amountand type of home care provinces pay for varies, yetmost people want to be cared for and die at home.Palliative home care is the most specialized type ofhome care. It deals with more complex symptommanagement and has a clear end-of life intent.

Successful palliative home care programs involvelinkages between home care providers, primarycare, community services and hospitals. Otherimportant elements include multidisciplinary careteams, a mix of providers with various skills andlevels of expertise, training for caregivers and acontinuum of care which is there when peoplerequire assistance.

Public funding for home-based palliative careacross Canada is inadequate. The health caresystem is about to be overwhelmed by demands forpalliative care. Palliative home care and support forhome-based caregivers relieves the pressure onother sectors of health care system and provides

Canadians with the care they want. Support andprovision of home care expands the options ofwhere people can choose to receive palliative care.

We know that palliative home care is important toCanadians. The Ipsos survey confirms the desire ofCanadians to die at home; 90% said that patientsshould have the right to receive care in their ownhome at the end of life. They also said that thepublic health system should cover the costs ofpalliative health care so everyone could access it asneeded (86%).

Support for the delivery of a comprehensive rangeof palliative home care services is also strongamongst Canadians. In the Ipsos survey, peoplewere provided with a list of 15 potentialcomponents of home-based palliative care. Amongthe most essential were 24/7 access to a nursespecialized in palliative care, daily help withcaregiving, and access to equipment, at 91%support for each. The survey respondents alsoidentified the need for more knowledge, including

The heart of a civil society is that we care for eachother – this needs to be translated into legislation withadequate funding.– Dr. Kevin Brazil

education and information for caregivers, someonein the system to coordinate care (all at 91% support)and a single point to call or access when theyneeded help (90%).

Recommendations

5 We recommend that the Canada Health Actbe amended to include integrated, palliativehome care. It must have universal access,provide support for patients and caregiversand be customized to suit their medical andpsycho-social needs. Home care must betransportable from province to province withno restrictions or waiting period.

6 Given that death is part of life, werecommend that a holistic approach topalliative care be adopted in order to delivera better quality of life to individuals. Care inthe home must be one of those choices.Palliative home care must be culturallyresponsive and have an integrated approach.The scope of home-based care must bewidened to overcome historical forms ofalienation and difference. All Canadiansshould be treated equally in the design,support and delivery of palliative care in thehome. Home-based palliative care must alsoaccord with the Canadian Charter of Rightsand Freedoms and the UN Declaration onthe Rights of Indigenous Peoples in order toaddress current inequities as they affectindigenous peoples.

7 We recommend that qualitative research befunded and the data used to improve care.Standardized quantitatively-orientedmethodological practices do not fullycapture the experience of illness and deathfrom the perspective of a patient orcaregiver. Other methodological practicesare required to represent those experiencesand ensure these experiences areconsidered when developing appropriatehome-based care.

8 We recommend that home-basedcaregivers be considered providers andincluded as members of palliative caredelivery teams. Patients should have theability, if desired, to play a key role in thedesign and implementation of theirpalliative care treatment.

15

16

Question Four A:

What resources are required to ensure adequate education,training and mentorship for caregivers of Canadians experiencinga life-limiting illness?

Family members and friends provide personal careand companionship to people during a life limitingillness and end of life. They provide physical andemotional support that is beyond measure from ahuman perspective. Their care saves the health caresystem millions of dollars each year, but is aconsiderable emotional, physical and financialburden to those providing the care.

The caregiving role is critical and Canadian societyneeds to ensure that caregivers receive the supportthey require through adequate caregiving education,training, mentorship and support services. Thesesupports need to be tailored to the caregiver’scircumstances to ensure they can provide carethroughout the period required and can do so feelingconfident and effective. Patient-identified caregiversprovide the most direct around the clock care topalliative patients at home and must be recognized asan essential part of the patient care team.

Recommendations

9 We recommend that caregivers be includedas part of the patient care team.

10 We recommend that training forcaregivers be developed based on theIpsos identified Elements of PalliativeHome Care.

11 The information needs of caregiverswill change over the progression ofthe disease or condition of the personthey are caring for. Therefore, werecommend that caregivers be givenongoing education about diseaseprogression. Information that is sharedneeds to be sensitive to thecaregiver’s comprehension andacceptance of the diagnosis.

12 We recommend that the caregiver’s needsfor respite care and personal healthassessments be supported by othermembers of the patient care team. Thepatient care team also needs to provideopportunities to discuss the challengesbeing faced by caregivers, includingisolation, stress, anxiety, exhaustion,anticipatory grief and confusion.

The courage to abide attentively in the kinship of silencewhen words are too disruptive to be spoken.– Jim Mulcahy

17

Question Four B:

What resources are required to ensure adequate education,training and mentorship for nurses and health care assistants whoprovide palliative care?

There are many educational materials and ways ofdelivering education in palliative care. However,there isn’t a lot of evidence showing how effectivethey are. A palliative care strategy needs to addressthe education, training and mentorship needs fornurses and health care assistants (HCAs). Thisincludes both formal training and on the job orother professional development opportunities.

Nurses and healthcare assistants provide themajority of paid care for patients receiving palliativecare in homes, hospices, long term care facilitiesand acute care facilities.

The curricula used to educate these care providershas not benefitted from a document ofcompetencies that is universal. The RegisteredNurses are able to expand their knowledge andpractice abilities by passing professionalcertification exams and/or earning an advanceddegree as a clinical nurse specialist in the field ofpalliative care.

Funding support for continuing education inpalliative care varies from province to province.Employer support is available in some jurisdictions,but is the responsibility of the individual nurse inothers. Healthcare assistants are underserved intheir educational programs and may be doublyhandicapped by not having access to user-friendlycontinuing education.

Provincial and national organizations have madelearning modules and curricula that would benefitnew entrants to nursing/healthcare assistantprograms. However, there is no current consensuson the scope of information required for eachgroup of learners.

Recommendations

13 We recommend that accreditationstandards for nursing programs includepalliative care content that meets therecommendations of the CanadianNurses Association, Canadian HospicePalliative Care Association and CHPC-NG. The content should reflect theimportance of communication skills;psychosocial competency; and culturalawareness, sensitivity, competence andcultural safety. Palliative care educationstandards for healthcare assistants needto be developed at the provincial level.

14 We recommend that access to ongoingpalliative care education within theworkplace needs to be developed anddelivered in ways that are affordableand portable.

15 We recommend that curriculadevelopment for both groups beinformed by patients and families,palliative care interest groups andinterdisciplinary colleagues. Nursesneed to be educated to initiate earlyentry to palliative care and to teachother members of the palliative caresupport team how this knowledgeshould be utilized.

18

Question Four C:

What resources are required to improve education, training andmentorship for physicians who provide palliative care?

Canadians physicians are not being adequatelytrained in palliative care. Ten out of 17 medicalschools provide fewer than 10 hours of palliativecare curriculum in their undergraduateprograms and many residents are not able tocomplete an elective in palliative care becausethere are few available. Once licensed,physicians have to complete a set number ofcontinuing medical education hours. Eventhere, few learning opportunities focus onpalliative care. It is difficult to visualize a medicalpractice where death doesn’t occur and virtuallyevery physician in Canada should be able toprovide basic palliative care. There are barriersto ensuring physicians are skilled in palliativecare that need to be addressed throughimprovements at the undergraduate, graduateand continuing education levels.

Resources for teaching palliative care in Canadamust be better deployed. To ensure that allphysicians have basic palliative care skills, the

two core competencies, symptom managementand communication skills, need to be taughtthroughout medical training and into continuingeducation. Communication skills include, butare not limited to, difficult conversations aboutlife-limiting illnesses, grieving, death, dying andinterdisciplinary communication. Academicinstitutions and clinical teaching sites needsupport to develop the capacity required inorder for these competencies to be taught.

Strengthening communication between all palliativecare team members, including patients and families,must be a strong component to the integratedcollaborative model that has been recommended.

‘Culture has a way of eating training for lunch.’Practising physicians less familiar with the palliativecare approach will require peer to peer mentorshipwithin an inter-disciplinary setting. Patient andfamily outcomes will be improved as a result of thisshift in education and culture.

Improving palliative care is as much about changing medicalculture as it is about teaching skills and knowledge.

Recommendations

16 We recommend that all physicians berequired to have the symptommanagement and communications skillswhich form the core competencies inpalliative care and that practisingphysicians be provided with opportunitiesto acquire these skills, including furthereducation and peer to peer mentorship.

17 We recommend that academicinstitutions and clinical teaching sites besupported in developing capacity forteaching the basic palliative carecompetencies. The emphasis should beplaced on teaching palliative care skillsrather than developing new material.Teaching palliative care should be furtherincented by partnering with accreditingand licensing bodies to ensure the twocore competencies of symptommanagement and communication aretaught and tested on medical school andlicensing exams.

19

20

Question Five:

What have strategic frameworks and plans accomplished forpalliative care when adopted by countries?

In 2014, the World Health Organization (WHO)called on members to develop and implementpolicies to ensure evidenced-based, effectiveand equitable palliative care is integrated intonational health services as an element of thecontinuum of care.

Evidence from a number of countries similar toCanada suggests that national strategies canensure better access to high quality palliativecare in a fiscally responsible manner. Theyappear more successful when:

l Clinicians, educators, researchers, serviceproviders, advocates and policy makers are allinvolved in the strategy development,

l Governments are responsible forimplementation and funding, and

l Milestones are established and regularly audited.

Palliative care development in Canada has beenorganic rather than strategic, largely influenced bylocal resources and practices.

There is a recognition that health care costs will beshifted to home care and other palliative modalities

and are unlikely to increase. However, new fundingwill be required for training to build capacity andresearch on the evidence base.

There are areas of excellence in Canada whichneed to be incorporated as Canada moves towardan integrated palliative care model.

The Australian National Palliative Care Strategy(NPCS) can inform the work ahead:

l Australia is comparable in terms of wealth,population size, geographic size andpopulation make-up, with a Federal/stategovernance structure.

l The Australian NPCS resulted in programsfocused on enhancing access, improving careservices and increasing the evidence base.

l Their strategy gave thought to all corecomponents and brought together allrelevant parties.

l There was substantial, sustained funding.

l There are regular audits to support achievementof the goals.

Nothing about us without us.

Among the stakeholders that need to be engagedin the development of an Integrated Palliative CareModel for Canada are:

l Charitable organizations l Advocacy groupsl Policy makersl Fundersl Private philanthropistsl Health care providersl Patients and family

It is critical that stakeholders get involved early sothat the strategy is collaborative.

Recommendation

18 We recommend that the Federalgovernment provide substantial andsustained funding for the developmentand implementation of a nationalstrategy, including capacity building,standards development and monitoring,and research.

21

22

Question Six:

Does measuring indicators that address desired outcomes, includingpatient/family reported outcomes and experience, improve thequality of and access to palliative care?

Measurement is necessary for improvement, butmeasuring performance in palliative care iscomplex. Care gets delivered in a variety of sitesand measurements have to capture aspectsimportant to patients and families.

The most important measures look at outcomes -what has been achieved for the patient and withinthe healthcare system. There is evidence thatusing patient surveys can improve quality of life.While other countries have establishedframeworks for measuring palliative care, Canadais at the beginning stages of developing a seriesof common benchmarks and common ways tocollect and report on patient surveys. Canadaneeds to be more than a country of pilot projectsand has to establish a coherent nationalframework for measuring palliative care.

Accreditation Canada standards recommend thatorganizations track performance measures forpalliative care patients and this information shouldbe collected and analyzed nationally.

An integrated system can only be built uponreliable data and evidence that captures theinformation needs of each of the players in thesystem. To improve the efficacy of palliative carea wide range of data is needed.

There is insufficient qualitative data that describesdesired palliative care patient outcomes. Kamal etal. (2014) identified some 284 indicators, of whichless than 5% reflect psycho-social, spiritual orcultural quality measures. Quality outcomemeasures, indicators and necessary common dataelements are available and have demonstratedvalue in improving outcomes and the quality ofcare. However, these data are largely based onquantitative measures and may only partiallycapture the patient’s experience of palliative care.

Currently, there is no national coordinating bodythat would direct research, collect and managedata. This is further complicated by inconsistenciesin methodology and the types of data collected;the lack of commensurability makes it challenging

An integrated system must be built on the collection ofinformation that identifies the very needs that the systemis designed to address.

to compare the efficacy of palliative caremeasurements. Quality improvement in palliativecare is difficult without evidence to demonstratehow improvement might be achieved.

Also, it is important to recognize that differentmetrics may be needed within differentcommunities and cultural backgrounds. Similarly,measuring Patient Reported Outcomes (PROM) isdifficult and there are questions of reliability whenadministered to an ailing patient or a patient inrapid decline.

The Australian Palliative Care OutcomesCollaborative (PCOC) can provide a model forCanadian data collection. These standards anddata should be identified and collected usingpluralist or mixed methodologies (quantitative andqualitative research methods.) All participants inan IPCM would have input into the purpose,design and use of the research. Data collectionacross all locations must be obtained consistentlywhere palliative care is delivered includinghospitals, hospice, long term care facilities and inthe home and community.

Recommendations

19 We recommend that quantitative, andespecially, qualitative data collection andanalysis be appropriately funded andappropriate to the needs of allparticipants in the IPCM.

20 As part of the IPCM Secretariat proposedin question one, we recommend a well-funded national centre of research beestablished to coordinate and disseminateresearch to fulfil the following functions:

l National service level performance datathat is derived from the commonoutcome measures;

l National benchmark standards againstwhich individual services comparethemselves;

l Nationally employed staff that supportpalliative care services to identifypriorities for clinical and systemschange and help implement qualityimprovement initiatives;

l Collection of aggregated data that isanalysed and reported back to eachservice; and

l Regular audits that will ensure thedelivery of palliative care services meetsthe culturally defined expectations ofcommunities.

23

24

Canadians have clearly said that living with illness and end of life need not be synonymous with pain,suffering and isolation. They know that doing better in this area means more support for the people whoneed palliative care. It also requires supporting the family members and friends who are there for their lovedones in the last part of life’s journey. Doing better also has to translate into better training and support forthe health professionals and workers who form the living infrastructure of our palliative care system.

Palliative care matters. That is why palliative care needs to be embedded in the Canada Health Act.

Conclusion

REFERENCESEwert, Benjamin, Hodiamont, Farina, van Wijngaarden, Jeroen, Payne, Sheila, Groot, Marieke, Hasselaar, Johann,Radbruch, Lukas. "Building a taxonomy of integrated palliative care initiatives: results from a focus group." BMJSupportive & Palliative Care. 2016;6(1):14-20.

Kamal A, Gradison M, Maguire J, Taylor D, Abernethy A. Quality Measures for Palliative Care in Patients With Cancer: ASystematic Review. Journal of Oncology Practice 2014 Jul;10(4):281-7.

Kennedy, Ian. “Patients are experts in their own field.” BMJ 326, June 14, 2003. Accessed November 1,2016.https://static1.squarespace.com/static/5755e91b044262d8f43cf6fa/t/5800f1b25016e1907a341b4b/1476456883031/10-a-i-Patient+as+Expert+%28BMJ%29.pdf

Masiulienė, Laura, Looney, Janet, Aertgeerts. Hanne, de Greef, Maurice. "The key features of successful awarenessraising campaigns." European Literacy Policy Network, 2015. Accessed November 8, 2016. http://www.eli-net.eu/research/research-for-success/

van der Eerden, Marlieke, Csikos, Agnes, Busa, Csilla, Hughes, Sean, Radbruch, Lukas, Menten, Johan, Hasselaar, Jeroen,Groot, Marieke. "Experiences of patients, family and professional caregivers with Integrated Palliative Care in Europe:protocol for an international, multicenter, prospective, mixed method study." BMC Palliative Care. 2014;13(1):1-9.

25

Contributors

Lay Panel MembersDon Newman, Lay Panel Chair: C.M., Former CBCPolitical Editor, Public Affairs Consultant (Toronto,Ontario)

Earl Campbell, BA, M Ed, Earl G. Campbell Consulting,Leadership Development (Markham, Ontario)

Penny Ericson, RN, MScN, former Dean of Nursing,Professor Emeritus, University of New Brunswick(Fredericton, New Brunswick)

Penelope Hedges, CPA, CA, IT Consultant(Vancouver, British Columbia)

The Rev. Dr. Marc Jerry, BA, MA (Econ), MDiv STD(Red Deer, Alberta)

Rosella Kinoshameg, RN (retired), BScN, DOS,Odawa/Ojibway from the Wikwemikong UncededFirst Nation Territory

Marissa Lepage, MSc. SLP, MD, Psychiatry Resident,University of Ottawa (Ottawa, Ontario)

Serena Lewis, BA, BSW, Registered Social Workerin a community-based hospice and educator(Truro, Nova Scotia)

Kenneth MacDonald, PhD, Professor of Geographyand Planning, University of Toronto (Toronto, Ontario)

Kerry Stewart, Patient and Family Experience Advisor,Kingston General Hospital and The Regional CancerCentre of Southeastern Ontario (Kingston, Ontario)

Ahmad Sabetghadam, PhD, International InterculturalEducation, Program Consultant, Multicultural HealthBroker Coop (Edmonton, Alberta)

Ghislain Savoie, Canada Council doctoral fellowshipholder, co-founder of a palliative care hospice namedfor his son (Gatineau, Quebec)

Expert Panel SpeakersDr. Kevin Brazil, Professor of Palliative Care in theSchool of Nursing and Midwifery at Queen’s UniversityBelfast, Professor (part-time) Department of ClinicalEpidemiology & Biostatistics, McMaster University

Dr. Hsien Seow, MD, Canada Research Chair in PalliativeCare and Health System Innovation, Associate Professorin the Department of Oncology, McMaster University,ICES McMaster Site Director

Dr. James Downar, MA, MD, Critical Care andPalliative Care Physician at the University HealthNetwork in Toronto, Program Director for the ConjointResidency Program in Palliative Care at the Universityof Toronto and current chair of the PostgraduateEducation Committee of the Canadian Society ofPalliative Care Physicians

Dr. Deborah Dudgeon, MD, W. Ford Connell Professor ofPalliative Care Medicine and Professor of Medicine andOncology at Queen’s University, Head of the PalliativeCare Medicine Program for Queen’s University andKingston General Hospital, co-chair of the AdvisoryCommittee on Palliative Medicine for the Conjoint TrainingProgram of the Royal College of Physicians and Surgeonsof Canada and the College of Family Physicians of Canada

Dr. R. Sean Morrison, MD, Director of the Lilian andBenjamin Hertzberg Palliative Care Institute and theNational Palliative Care Research Center. Professor ofGeriatrics and Palliative Medicine, and Hermann MerkinProfessor of Palliative Medicine in the BrookdaleDepartment of Geriatrics and Palliative Medicine at theIcahn School of Medicine at Mount Sinai

Dr. Barbara Pesut, PhD, Associate Professor in the Schoolof Nursing at the University of British Columbia, CanadaResearch Chair (Tier 2) in Health, Ethics and Diversity

Dr. Jane Seymour, RN, PhD. University of SheffieldProfessor of Palliative and End-of-Life Care, HonoraryChair at the University of Queensland, Australia

Dr. Allison Williams, Professor, School of Geographyand Earth Sciences, McMaster University, CIHR ResearchChair in Gender, Work and Health (2014-2019)

Project LeadershipCarleen Brenneis, Director, Palliative Institute,Covenant Health

Dr. Konrad Fassbender, Scientific Director, PalliativeInstitute, Covenant Health

Conference Co-Chairs andSteering Committee MembersCO-CHAIRS:

Fred Horne, former Alberta Minister of Health(2011-2014)

Karen MacmillanSenior Operating Officer, Executive Lead, Palliative Care,Covenant Health

MEMBERS:

Sébastien Audette, President, Accreditation CanadaInternational

Sharon Baxter, Executive Director, Canadian Hospiceand Palliative Care Association

Jeff Blackmer, Vice-President, Medical Professionalism,Canadian Medical Association

Heather Bryant, Vice-President, Cancer Control,Canadian Partnership Against Cancer

J. David Henderson, President-Elect, Canadian Societyof Palliative Care Physicians

Anya Humphrey, Family/Patient Advocate

Shelly Jamieson, CEO, Canadian PartnershipAgainst Cancer

Maria Judd, Senior Director, Canadian Foundation forHealthcare Improvement

Tammy Moore, CEO, ALS Society of Canada

John Ruetz, President & CEO, Catholic Health Sponsorsof Ontario

Stephen Samis, Vice-President of Programs, CanadianFoundation for Healthcare Improvement

Marcel Saulnier, Associate ADM, Strategic PolicyBranch, Health Canada

Shirlee Sharkey, President & CEO, Saint ElizabethHealth Care

Anne Sutherland Boal, CEO, Canadian NursesAssociation

Kathryn Todd, Vice-President, Research, Innovation &Analytics, Alberta Health

Russell Williams, Chair, Canadian Frailty Network

Jewel Buksa, Project Manager, Palliative Care Matters,BUKSA Strategic Conference Services

26 . We gratefully acknowledge the contribution of the leadership and staff of Covenant Health for theirtireless efforts to bring the Palliative Care Matters initiative to Canadians

27

Canadian Reference Working GroupCO-CHAIR:

Dr. Konrad Fassbender, Scientific Director,Covenant Health Palliative Institute

CO-CHAIR:

Carleen Brenneis, Director, Covenant HealthPalliative Institute

MEMBERS:

Sharon Baxter, Executive Director, Canadian Hospiceand Palliative Care Association

Cecile Bensimon, Director of Ethics, CanadianMedical Association

Robin Fried, Certified Advanced Integrative EnergyHealing Practitioner, A Life in Progress

Esther Green, Director, Person-Centered Perspective,Canadian Partnership Against Cancer

Anya Humphrey, Family/Patient Advocate

Maria Judd, Senior Director, Canadian Foundationfor Healthcare Improvement

Julie Lachance, Senior Policy Analyst, Health Canada

Nancy Lefebre, Senior Vice-President, Saint ElizabethHealth Care

Michelle Parker, Program Lead, Health Reports,Canadian Institute for Health Information

Diana Rasmussen, Executive Director, ALS Manitoba

Gordon Self, Vice-President, Mission, Ethics andSpirituality, Covenant Health

James Silvius, Medical Director, Seniors Health andPharmacy Services, Alberta Health Services

Judy Simpson, CRWG Nominee from CanadianNurses Association

Russell Williams, Chair, Canadian Frailty Network

Judy Wry, Project Coordinator, Palliative Care Matters,BUKSA Strategic Conference Services

Project ManagerJewel Buksa, President and CEO, BUKSA StrategicConference Services

Project Management TeamLisa CruthersJudith Dyck Katrina Tarnawsky Judy Wry

HostCovenant Health

SponsorsBenefactorsCanadian Foundation for Healthcare Improvement Canadian Partnership Against Cancer Health Canada

FriendCatholic Health Alliance of CanadaSaint Elizabeth Health Care

SupporterAccreditation Canada InternationalCatholic Health Corporation of ManitobaSt. Joseph’s Health Care SocietySt. Joseph’s Health Centre

ContributorCanadian Virtual HospiceCanadian Medical AssociationSt. Joseph’s Health SystemProvidence HealthcareSt. Joseph’s General Hospital

In KindCanadian Nurses AssociationCanadian Virtual Hospice

Palliative Care Mattersc/o Covenant Health Palliative Institute1-780-735-9637www.palliativecarematters.ca