the way forward national framework

THE WAY FORWARD NATIONAL FRAMEWORK:a r o a d m a p f o r a n i n t e g r at e d pa l l i at i v e a p p r o a c h t o c a r e

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imagine a time when hospice palliative care is available to

canadians when and where they need it; where living well until

death is the goal of care. the Way forward – a roadmap for an

integrated palliative approach to care – can help us get there.

changes are already underway in care settings across the

country. You can be part of the change.

the Way forward initiative would like to thank the many

healthcare providers, policymakers, organizations, and families

and caregivers across all sectors -- including federal, provincial

and territorial governments, home care, primary/acute care,

long-term care and organizations representing canada’s first

peoples – who helped create The National Framework: A

Roadmap for an Integrated Palliative Approach to Care. the

framework benefited greatly from your wisdom and advice. We

would also like to thank the government of canada for

recognizing the importance of the issues and having the

foresight to fund this ground-breaking initiative.

1Table of Contents

Preface.............................................................................................2Executive Summary .........................................................................4A Roadmap to Guide Change.........................................................6The Need for a System-wide Shift...................................................8

I. A Case for an Integrated Palliative Approach to Care............9Dying is Part of Living......................................................................9The Challenge: The Way We Die is Changing ................................9The Opportunity: An Integrated Palliative Approach....................11

II. About an Integrated Palliative Approach to Care ...............13What is Hospice Palliative Care? ...................................................13What is an Integrated Palliative Approach to Care? .....................14Where will an Integrated Palliative Approach be Provided?.........15Who will Provide an Integrated Palliative Approach to Care? ......16Why Adopt an Integrated Palliative Approach to Care? ...............18

III. The National Framework ....................................................21Vision ................................................................................................21Goals.................................................................................................21Principles ..........................................................................................21The Benefits of the National Framework ..........................................22

Desired Outcomes ........................................................................23Our Roadmap................................................................................24

IV. The Framework in Action on the Front Lines......................31Federal, Provincial and Territorial Governments: Develop Policies and Support the System ....................................32Regional Program Planners: Create a Seamless Network of Services ........................................36Care Settings and Providers: Find Practical Ways to Deliver an Integrated Palliative Approach.................................................40

Long-Term Care..........................................................................40Home Care .................................................................................44Home Care in First Nations and Inuit Communities ...................47Primary Care ...............................................................................48Chronic Disease Management Teams/Acute Care .....................50

V. Next Steps..........................................................................52

Appendix: QELCCC ......................................................................53References.....................................................................................54Lexicon of Terms ...........................................................................56Advisory Committee and Project Staff ..........................................58

Table of Contents

For citation: Canadian Hospice Palliative Care Association, The Way Forward NationalFramework: A roadmap for an integrated palliative approach to care, The Way Forwardinitiative, March 2015.

2 Preface

An integrated palliative approach to care focuses on meeting a person’s

and family’s full range of needs – physical, psychosocial and spiritual – at all

stages of frailty or chronic illness, not just at the end of life.

It reinforces the person’s autonomy and right to be actively involved in his

or her own care – and strives to give individuals and families a greater

sense of control.

It sees hospice palliative care as less of a discrete service offered to dying

persons when treatment is no longer effective and more of a simultaneous

or integrated approach to care that can enhance their quality of life

throughout the course of their illness or the process of aging.

The Way Forward is the result of acollaborative three-year initiative led by theQuality End-of-Life Care Coalition of Canada(QELCCC), managed by the CanadianHospice Palliative Care Association(CHPCA), and supported by one-timefunding from the Government of Canada. Itengaged healthcare sectors, professionalsand governments in creating a roadmap foran integrated palliative approach to care in:

• community settings where care isdelivered. This includes primary carepractices, home care, long-term care,residential hospices, hospitals and otherplaces where people may live and die.

• organizations that provide care for peoplewith chronic illnesses, including dayprograms and disease-specific supportgroups like the Alzheimer’s Society, the

Heart and Stroke Foundation and theCanadian Cancer Society.

Building on successful initiatives alreadyunderway across Canada, The Way Forwardidentified best practices that could help all caresettings implement an integrated palliativeapproach to care and ensure that culturallysensitive, supportive hospice palliative careservices are available to all those who canbenefit, regardless of where they live in Canada.

The Way Forward consists of this document – aNational Framework – and a series of other toolsincluding:

• six key discussion documents describing anintegrated palliative approach, innovativemodels around the world, the cost-effectiveness of a palliative approach, amongothers;

Preface

3Preface

The National Framework reflects ideas and feedback fromgovernments, healthcare professionals, organizations and

individuals, including First Nations groups.

• an environmental scan of national andinternational indicators and frameworks;

• the report of a national survey on “WhatCanadians Say” about hospice palliative care,an integrated palliative approach to care, andadvance care planning;

• a report on primary care research thatsurveyed general/family practitioners andnurses and palliative care;

• informative infographics and backgrounders;

• a Lexicon of Terms related to an integratedpalliative approach to care;

• the consultative report on Family Caregivers;

• five interactive modules based on the NationalFramework; and

• two educational videos.

Together, they summarize the research on thehealth impact and cost-effectiveness of anintegrated palliative approach to care. They alsoprovide best practices and other informationthat settings can use to make the case forchange and implement an integrated palliativeapproach to care.

The first draft of the framework was developedin the spring of 2013 by The Way Forwardadvisory committee with advice from membersof the QELCCC. It was distributed widely andthen revised and refined based on feedbackfrom governments, healthcare professionals,organizations across the country, including FirstNations groups, and Canadians facing careissues associated with aging, frailty and chronicillnesses.

Since then, organizations across Canada –including the Government of Alberta, theCanadian Home Care Association, the CanadianNurses Association, and the Canadian MedicalAssociation, among others – have used theframework to implement an integrated palliativeapproach to care. Used alone or with the SpeakUp! Toolkit – the national advance care planninginitiative – The Way Forward can enhance careand quality of life for Canadians.

http://advancecareplanning.ca/community-organizations/download-the-speak-up-campaign-kit/acp-day-campaign-kit-2015.aspx

CASe STudy

Thérese is 86 years old. She is becoming

frailer as she ages. Her arthritis bothers her

more these days and she has a heart

condition that affects her ability to walk for

very long. Her doctor would not be

surprised if Thérese died in the next three

or four months but she could also live for

another few years. Her husband died two

years ago as did one of her neighbours, who

was a close friend. One of her daughters

lives in town and drops by every few days.

Her other children live several hours away.

Thérese is aware that she is nearing the end

of life. She would like the opportunity to

talk to her doctor and family about what she

wants for her care. She is also experiencing

more pain and discomfort and would

appreciate some psychosocial support to

help her deal with all the losses in her life.

Historically, hospice palliative care wasoffered only to people who were in thelast weeks or months of life, when allcurative treatments had been exhausted.At that point, the focus of care shiftedfrom cure to comfort. But illnesstrajectories are changing. Thanks toadvances in medical treatment, peoplewho are aging or who are diagnosed withlife-threatening illnesses can now livemany years with their condition — or theycould die suddenly. Their time of death isoften difficult to predict, which means

that many are never identified as being atrisk of dying or offered the benefits ofpalliative care services — such as socialsupport, advance care planning, andeffective pain and symptom management— throughout their illness.

Only a small proportion of Canadians willneed the kind of complex, intensive ortertiary hospice palliative care providedby expert palliative care teams ininstitutional settings, such as residentialhospices and acute care hospitals.However, everyone who is becoming frailor is faced with a chronic illness couldbenefit from certain key palliative careservices. As our population ages, we mustensure that all Canadians have access topalliative services integrated with theirother care to help them managesymptoms, enhance their lives, give thema greater sense of control, and enablethem to make informed decisions aboutthe care they want. More equitable accessto palliative care integrated with theirother care will enable more Canadians tolive well with their illness up to the end oflife. It will also enable more people toreceive care in the setting of their choiceand reduce the demand on acute careresources.

Executive Summary

4 Executive Summary

5

Everyone who is becoming frail oris faced with a chronic illness

could benefit from certain keypalliative care services.

Executive Summary

To help all Canadians benefit frompalliative care programs and services, wemust shift practice. We must move awayfrom thinking that palliative care is onlyabout care at the end of life, oncecurative treatments have stopped. Wemust distinguish between the experthospice palliative care services providedby specialized teams for people withcomplex needs at end of life and anintegrated palliative approach to care that

can be delivered by a range of providersto people throughout their illnesstrajectory, based on their needs andpreferences. We must also identify waysto adapt an integrated palliative approachto Canada’s diverse healthcareenvironments as well as to the uniqueneeds and jurisdictional realities of allpeople in Canada, including Canada’sFirst Peoples.

A Roadmap to Guide Change

6 A Roadmap to Guide Change

We must move away from thinking thatpalliative care is only about care at theend of life...

7

visionAll people in Canada who are aging and/or have chronic life-limitingconditions will have the opportunity to benefit from an integratedpalliative approach to care.

goals of an integrated palliative approach to care1. Canadians will talk with their care providers about advance care

planning, and discuss their wishes early and often as their illnessprogresses or as they age.

2. People who are aging, frail and/or havechronic illnesses will receive hospicepalliative care services integrated withtheir other care in the setting of theirchoice.

3. People who are aging, frail and/or havechronic illnesses will receive consistent,seamless integrated care if/when theymust change care settings.

impact• all care settings are able to provide holistic care that respects the

person’s values and preferences;

• more people in Canada and their families have access to high qualityintegrated palliative care services that reflect their goals, help themenjoy good quality of life and ensure they have a stronger voice in theircare (i.e. more autonomy);

• people can move seamlessly from one care setting to another if theirneeds change;

• there is less need for emergency visits and unplanned hospitalizations,with a system able to make more effective use of health resources.

Vision, Goals, Impact

8 The Need for a System-wide Shift

Ensuring that all people in Canada haveaccess to an integrated palliativeapproach to care requires significant shiftsthroughout the healthcare system. Based on the practical experience ofpeople and organizations already leadingthe change to this kind of system-wideshift, we must continue to:

1. Promote and support a shift in practiceculture;

2. Establish a common language;

3. educate and support providers;

4. Engage Canadians in advance careplanning;

5. Create caring communities;

6. Adapt an integrated palliativeapproach to provide culturally-safecare, including with and for Canada’sFirst Peoples;

7. Develop outcome measures andmonitor the change.

This framework describes concrete stepsthat can be taken at the federal andprovincial/territorial levels, the regionalhealth planning level and in each sector orsetting – including long-term care, homecare, primary care, acute care andspecialized hospice palliative care – tohelp the system make the shift.

Everyone has a role to play. Organizationsand settings do not need to wait forfederal, provincial/territorial or regionalaction. An integrated palliative approachcan start anywhere – and should starteverywhere.

The Need for a System-wide Shift

An integrated palliativeapproach can start

anywhere - and shouldstart everywhere.

9I. A Case for an Integrated Palliative Approach to Care

In the past, many Canadians would diesuddenly from an infectious disease, asudden fatal event such as a heart attack,stroke or organ failure, or they wouldhave a diagnosis, like cancer or AIDS, thathad a recognizable terminal phase. Theirproviders could predict, with relativeaccuracy, how long they would live. In thelast few weeks of life, they may havereceived organized hospice palliative careservices that would help meet theirphysical, psychosocial and spiritual needs,and enhance their living even at the endof life. However, that predictable declinefrom illness to death is no longer ascommon.

The Challenge: The Way We Die is Changing

Dying is Part of Living

Most people with life-limiting and serious illness

“dwell in the indistinct zoneof chronic illness that has no

specific care deliverysystem”. (Lynn, 2004)

Treatment advances have helped extendour lives. Canadians – including those ofus who have a chronic illness or arebecoming increasingly old and frail – areliving longer, but we will all still die.

As we age with these illnesses andfrailties, we are both living and dying. Toprovide the best possible care, ourhealthcare system must acknowledge thatdying is part of living. The care we receiveshould help us manage and maintain ourhealth and plan for the kind of care wewant as well as help us prepare for death.

Only 10% of people die suddenly. Theother 90% of us will require care andsupport at the end of life. Only a smallproportion of Canadians – about 15% –will need the kind of complex (tertiary)hospice palliative care services providedby specialists in residential hospices andpalliative care units. For the rest of us, ourneeds can be met by integrating apalliative approach into the care wereceive in whatever setting we are in, suchas at home, in a long-term care facility, inhospital – even in a shelter or prison.(iPANEL, 2012)

I. A Case for an IntegratedPalliative Approach to Care

Six in ten Canadians (57%) either personally suffer from a chronic illness or havesomeone in their immediate family with a chronic illness. (CHPCA Fact Sheet, 2014)

Chronic diseases account for 70% of all deaths. (CHPCA Fact Sheet, 2014)

Most people will die with an illness that has no recognizable terminal phase, althoughthey will have lived for months or years in a state of fragile health or “vulnerablefrailty.” (Lynn, 2005)

10 I. A Case for an Integrated Palliative Approach to Care

Canadians are now more likely to survive a heartattack or a diagnosis of cancer, and they arealso more likely to be living long-term with twoor more chronic conditions. As they age, theybecome more frail and vulnerable to infectionsor falls that could lead to death. Because oftheir complex health needs, they candeteriorate quickly and die suddenly or theycan experience periodic crises andcomplications related to their condition thatcan lead to death – without ever beingidentified as being near the end of life. Because“when” they will die is less predictable, mostpeople never receive the palliative care servicesthat could enhance life even in the face ofchronic illnesses. For example, three-quartersof British Columbians who die do so withoutbeing identified as people who could benefit

from palliative care services. (iPANEL, 2012) Thisis why the “surprise” question – that is, given thisperson’s condition, would it be a surprise if he orshe were to die? — has become so important.This question puts the emphasis on what couldhappen – given changing illness trajectories –rather than on a physician’s ability to predictwhen someone will die.

The surprise question also helps healthcareproviders think more holistically about theperson’s physical, emotional and spiritual needsthroughout the illness trajectory. These needs,which include pain, loss of mobility and otherfunctions, physical and mental limitations, andloss of roles and relationships (Cochrane et al,2008), are not being adequately met by currenthealth services. For example:

John, age 67, has coronary artery disease,

hypertension and atrial fibrillation. He has

had two heart attacks in the past two years

and, each time, he was sick enough to die.

Each time he recovered, but with reduced

heart function. He is weak and unsteady on

his feet, and suffers from shortness of

breath. His future is unpredictable: he could

live for days or years. He would like help

controlling his symptoms and improving his

quality of life, but the care he receives at the

cardiac clinic is mainly focused on managing

his cardiac disease and responding to

cardiac events.

Mary, age 79, has diabetes, hypertension, chronic renal failure and

osteoarthritis. She had been taking NSAIDS for hip and knee pain,

which led to her being hospitalized for acute renal failure. Her

physician discussed the options with her family and she agreed to a

two-week trial of hemodialysis. Her kidneys improved enough for

her to stop dialysis but the underlying condition remained. Mary

didn’t want to have dialysis again. She hated the experience of

being tied to a machine and felt it had a negative impact on her

quality of life. However, she did want some kind of treatment for her

aching joints and the burning in her hands and feet. She wasn’t sure

how to discuss her wishes with her family who wanted her to take

advantage of all possible treatments. These discussions are an

integral part of formal hospice palliative care but Mary didn’t fit the

usual criteria to receive those services.

Being diagnosed as “close to death” should no longer be the trigger for Canadians toreceive services that can enhance their health and well-being, their living and their dying.

The palliative approach is not delayed until the end stages of anillness but is offered early to provide active comfort-focused careand reduce suffering. It also promotes understanding of loss and

bereavement. (Adapted from iPANEL, 2012)

11I. A Case for an Integrated Palliative Approach to Care

In John’s case, an integrated palliative approach would mean

that someone on his cardiac care or primary care team would

talk to him frankly about his illness and the uncertainty of his

prognosis. His medical treatment would be optimized to control

his symptoms. He would be taught a variety of techniques to

help him manage his breathing, diet, energy and stress. He

would be asked about his preferences for treatment. Based on

that discussion, he might choose to be treated for any reversible

problems, such as pneumonia or other infections, but not to

have CPR or intubation. The team would then help him

communicate his wishes to his family.

In Mary’s case, an integrated palliative

approach to care would mean having an in-

depth pain assessment and being given

treatments and strategies to relieve pain. It

would also mean having a meeting with her

care team and family to discuss her

concerns and wishes for ongoing

treatment. Mary would develop an advance

care plan that would instruct her physician

and her family that, no matter what, she

didn’t want dialysis again.

The palliative approach integrates key aspects of hospice palliative care into the regular care thatpeople are already receiving in their primary care provider’s office, in their home, in long-termcare homes, in hospital or in other community settings.

How will an integrated palliative approach to care change people’s experience?

An integrated palliative approach to care recognizes that a healthcare system focused oncuring or treating specific illnesses sometimes “forgets” to care for the whole person.

An Integrated Palliative Approach Can Closethe Care Gap

12 i. a case for an integrated palliative approach to care

An integrated palliative approach to careacknowledges that most people want tobe truly informed about their illness andprognosis, and to have an opportunity totalk openly about their health, their hopesand fears, and about the possibility ofdying. An integrated palliative approachto care ensures that people are askedabout their care goals and preferences,and encouraged to revisit those goals anddiscuss how they may change over time.For example, early in the diseasetrajectory, the person’s main goal isusually to prolong life. He or she is oftenwilling to give up some function andtolerate some pain for a chance to livelonger. As time goes on, maintainingfunctions such as mobility or cognitiveability may become more important. Asthe condition progresses, comfort may

become the main goal of care and theperson may reject treatments that willcause pain or require hospitalization.(Gillick, 2005)

An integrated palliative approach to carealso recognizes that, when the care teamis focused on treating an illness ratherthan the whole person, then pain andother symptoms (including those relatedto treatments) may not be managed aswell as they could be, especially as theillness progresses and the personexperiences more complications.

An integrated palliative approach givespeople the opportunity to discuss theircare goals and preferences early andoften, and helps them manage symptomsand receive care in the setting of theirchoice.

13II. About an Integrated Palliative Approach to Care

Palliative Care:

II. About an Integrated Palliative Approach to Care

The World Health Organization defines hospice palliative care as: an approach that improvesthe quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of earlyidentification and impeccable assessment and treatment of pain and other problems —physical, psychosocial and spiritual.

• provides relief from pain and otherdistressing symptoms throughout theduration of an illness;

• affirms life and regards dying as a normalprocess;

• neither hastens nor prolongs death;

• integrates the psychological and spiritualaspects of patient care;

• offers a support system to help patientslive as actively as possible until death;

• offers a support system to help the familycope during the patient’s illness andthroughout their own bereavement;

• uses a team approach to address theneeds of patients and their families,including bereavement counseling;

• will enhance quality of life, and may alsopositively influence the course of illness;

• is applicable early in the course of theillness, in conjunction with other therapiesthat are intended to prolong life, andincludes those investigations needed tobetter understand and manage distressingclinical complications. (World HealthOrganization, 2013)

Hospice palliative care engages individualsand their families in planning for the care theywant at different stages in their illness basedon their own goals and values and on a clearunderstanding of their prognosis andtreatment options (advance care planning).When people have access to palliative careservices integrated with their other care, theyreport fewer symptoms, better quality of life,and greater satisfaction with their care. Thehealthcare system reports more appropriatereferrals, better use of hospice care, feweremergency room visits and hospitalizations,and less use of ineffective intensiveinterventions in the last days of life.

An integrated palliative approach to care focuses on meeting a person’s and

family’s full range of needs – physical, psychosocial and spiritual – at all stages of

a chronic illness. It reinforces the person’s autonomy and right to be actively

involved in his or her own care, and strives to give individuals and families a

greater sense of control. It changes the understanding of hospice palliative care

from a service offered to dying persons when treatment is no longer effective to

an approach to care that can enhance their quality of life throughout the course

of their illness or the process of aging.

14 II. About an Integrated Palliative Approach to Care

What is an Integrated PalliativeApproach to Care?

An integrated palliative approach to caremakes key aspects of palliative care availableto individuals and families at appropriatetimes in their lives or during an illness and inall care settings. For example, when an olderperson begins to become frail or whensomeone is diagnosed with a chroniccondition, the person and family wouldreceive:

• open and sensitive communication aboutthe person’s prognosis and illnesstrajectory, including any changes they mayhave to make in their lives, such as limitingcertain activities;

• advance care planning, includingdiscussing the range of treatmentsavailable as well as their benefits and risks,setting goals of care, and establishing asubstitute decision maker;

• psychosocial and spiritual support forboth the person and his or her familymembers/caregivers to help them if theyare struggling with any issues or lossesrelated to the illness;

• pain or symptom management that maybe required.

As the person becomes more frail or theillness progresses (a process that may takeyears), the person and family would receive:

• regular opportunities to review theperson’s goals of care and adjust carestrategies to reflect any changes in thosegoals;

• ongoing psychosocial support;

• pain and symptom management;

• referrals to expert hospice palliative careservices if required to help them cope withchallenging physical, psychosocial, orspiritual symptoms, conflicts over goals ofcare or decision making, or family distress.


Where will an Integrated PalliativeApproach be Provided?

An integrated palliative approach can be provided in urban,rural and remote settings, including

Aboriginal communities.

Since an integrated palliative approach isa way of providing care and not aspecialized set of services, it can beprovided in all settings in the communitywhere the person lives or is receivingcare, including in the primary careprovider’s office, at home, in long-termcare facilities, in hospitals, and in sheltersand prisons. An integrated palliativeapproach can be provided in urban, ruraland remote settings, including Aboriginalcommunities.

By offering this approach in all settingswithin the community, we can providebetter care for people and their familiesthroughout the many transitionsassociated with chronic conditions such aslung, kidney and heart diseases, dementiaand some cancers.


Who will Provide an IntegratedPalliative Approach to Care?

The same practitioners providing theperson’s care now – including primary carephysicians and nurses, home care nurses,personal support workers, long-term carestaff, hospital staff and the peopleresponsible for healthcare in shelters andprisons – will provide an integratedpalliative approach to care in theircommunities. To ensure culturally-responsive services when providing care

with and for Canada’s First Peoples, careteams will include community resourcepeople, Elders and cultural advisors as fullyrecognized members of the care team.

An integrated palliative approach to care isa shared-care model. Expert palliative careteams based in residential hospices,hospital palliative care units or in thecommunity support local care teams andshare the care. The role of the expertpalliative care team may vary in eachjurisdiction depending on the extent towhich the palliative approach to care hasbeen integrated into care settings in thecommunity. For example, in communitiesor regions that are just beginning toimplement an integrated palliativeapproach to care, these teams maycontinue to provide a significant amount ofpalliative care, even for people who do nothave complex needs. As a community

Some elements of palliative care, such as aligningtreatment with a patient’s goals and basicsymptom management, should be routine aspectsof care delivered by any practitioner. Other skillsare more complex and take years of training tolearn and apply, such as negotiating a difficultfamily meeting, addressing veiled existentialstress and managing refractory symptoms. (Quill& Abernethy, 2013)


The same practitioners providing the person’s care now willprovide an integrated palliative approach to care in their

communities or settings of care – whether in primary care,home care, long-term care or other.

develops an integrated palliativeapproach and more primary careproviders in different settings have theconfidence and skills to integratepalliative services into their patients’ care,the expert team will shift to more of ashared-care role, which can include:

• educating providers;

• assessing individuals and referring themto the setting that best meets theirneeds and preferences;

• being available to consult and provideadvice to primary and community careproviders;

• providing on-call, after-hours orweekend services to reduce the burdenon primary care providers;

• sharing the care for people and familieswho face challenging physical,

psychosocial or spiritual symptoms,conflicts over goals of care or decisionmaking, or family distress;

• in some cases, taking over a person’scare if he or she has to transition to aresidential hospice or hospital palliativecare unit (particularly if the familyphysician is not able to continue toprovide care in those settings). When thistransition does occur, the expertpalliative care team ensures the primaryproviders are kept informed about theperson’s care and progress and are ableto resume responsibility for the person’scare if his or her condition stabilizes andthe person can be discharged back homeor into long-term care.

In an integrated palliative approach to care,expert hospice palliative care teams take the leadonly when people have complex, intensive ortertiary end-of-life needs; such as heart failure,respiratory illness, dementia or severe symptomissues, and when normal medical managementhas not been able to relieve symptoms.


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Why Adopt an Integrated PalliativeApproach to Care?

An integrated palliative approach to care isa cost-effective way to close a gap in careand meet the increasingly complex healthand psychosocial needs of Canadians andtheir families within their communities. It iscare that looks at the whole person. Itimproves health and quality of life forpeople who are aging, frail or have achronic illness, gives people a greater senseof control over their lives and care, andmakes more effective use of healthresources – including the small number ofpalliative care experts in Canada.

More Autonomy and Control An integrated palliative approach worksbecause it gives people the information

and support they need to make informeddecisions about their care. Although wehave treatments for many progressiveillnesses, these illnesses cannot be cured.An integrated palliative approachrecognizes that, faced with progressivediseases, people’s goals of care maychange over time. It gives them theopportunity to discuss their values andwishes earlier and more frequently so theyhave a greater sense of control.

Seamless TransitionsWhen the palliative approach isintegrated into all care settings within thecommunity, people will receive consistentseamless care even when they have to

The following diagram illustrates how a palliative approach to care can be integrated into themanagement of chronic progressive diseases. It shows how different aspects of palliative care can beincorporated at different stages of the illness.

In one study with people withALS, participants whoreceived an integratedpalliative approach to carehad a 30% decrease inmortality compared to thosewho received usual care.They also reported betterfunction and mobility, lessdeformity and greatercomfort and quality of life.(Mayadev et al, 2008)

People with cancer whoreceived integrated palliativecare were less likely to die inthe year after enrolling in thestudy. They also reportedbetter quality of life andmood. (Bakitas et al., 2009)


move from one setting to another. Their advancecare plan and their goals of care will travel withthem, and their wishes will be respected in all caresettings. Seamless transitions are particularlyimportant for Canada’s First Peoples, who mayhave to move from one jurisdiction to another inthe course of their care (i.e., from the federalhealth system to a provincial health system). Whenthere is effective communication betweenjurisdictions – that is, when the person’s care planand goals of care travel with them, and Elders andcultural advisors are recognized members of theircare teams – then there will be less fragmentationand more coordinated care.

Better Health OutcomesA series of studies with people living with a rangeof chronic illnesses, including amyotrophic lateralsclerosis (ALS), congestive heart failure, chronicobstructive pulmonary disease, multiple sclerosisand some forms of cancer, found that anintegrated palliative approach to care led tobetter outcomes for individuals and their familycaregivers, including fewer symptoms, betterquality of life, and greater patient satisfaction.(Bakitas et al., 2009; Temel et al., 2010; Meyers etal., 2011; Smith et al., 2012)

An integrated palliative approach to care was alsoassociated with positive effects on emotional

Canada is not the only jurisdiction exploring the potential of thisapproach to care. In its report, Approaching Death, the US Institute ofMedicine proposed a mixed management model that allows for active,life-prolonging treatment and hospice palliative care to occur in parallelin order to provide comprehensive care throughout the illness anddying experience rather than only at the end. (Glare &Virik, 2001) TheWorld Health Organization has also called for palliative care to beintegrated across disease trajectories and settings. (World HealthOrganization, 2007)

20 ii. about an integrated palliative approach to care

Expensive invasive procedures in the last year of life account forabout 18% of Canadians’ lifetime healthcare costs – and theseprocedures often do not prolong life or benefit the patient.Sometimes they cause more suffering and hasten death. If we donot find better ways to provide care, the financial, social andhuman implications will be overwhelming. (Fowler, 2013)

wellness, less suffering, and greater longevity.In some cases, people who receive anintegrated palliative approach to care livedlonger while using fewer services. (Bakitas etal., 2009)

Better use of ResourcesAn integrated palliative approach to care is

urgently needed for people with chronic

conditions and for the healthcare system. Over

the next 20 years, our healthcare system will

face a tidal wave of aging Canadians, many of

whom will have chronic conditions. In 2007,

37% of Canadians reported they had been

diagnosed with at least one chronic condition,

while 41% of seniors had two or more chronic

conditions. These illnesses accounted for 70%

of all deaths. (Statistics Canada, 2001)

Although Canadians can die at any age, the

average age of death in Canada is 74. With the

aging of our population, the number of

Canadians dying each year will increase 40%

by 2026 to 330,000 and 65% by 2036 to more

than 425,000. (Statistics Canada, 2001)

Although most Canadians say they would

prefer to die at home surrounded by their

loved ones, almost seven of 10 die in hospital

– many of them in intensive care. (CHPCA,

2012)

An integrated palliative approach to care offersa viable alternative. It has the potential totransform the healthcare system because itresults in:

• less burden on caregivers;

• more appropriate referral to and use ofhospice palliative care services;

• more efficient use of the small number ofpalliative care experts in Canada;

• fewer emergency room visits and hospitalstays;

• reduced use of intensive care services.(Lussier et al, 2011)

In a Kaiser Permanente study in the UnitedStates, individuals who received palliative careservices integrated with other care had fewerintensive care unit stays and lower health costs:a net cost saving of $4,855 per patient. (Gadeet al, 2008). We have seen similar economicimpacts in Canada. A study by the NiagaraWest End-of-Life Shared-Care Project foundthat providing enhanced palliative care team-based homemaking and nursing services for 95 people in rural Ontario dying at home withillnesses such as cancer, heart disease, andchronic obstructive pulmonary disease cost$117.95 a day (Klinger et al., 2013) –significantly less than $1,100 cost per day forhospital care in Ontario. (CIHI, 2011)

21III. The National Framework

1The term family includes people the person has chosen to assist with his/her care. It denotes a group of individuals with acontinuing legal, genetic and/or emotional relationship to the person.

III. The National FrameworkAn integrated palliative approach to care will vary in different parts of the country,depending on needs, resources, systems and jurisdictions. The models will be driven locally.

However, the National Framework can be used to guide implementation of an integratedpalliative approach and adapted to meet local needs.

VISIONAll people in Canada who are agingand/or have chronic conditions willreceive the benefits of an integratedpalliative approach to care.

GOALS OF AN INTeGRATedPALLIATIVe APROACH TO CARe1. Canadians will talk with their careproviders about advance care planning,and discuss their wishes early and often astheir illness progresses or as they age.

2. People who are aging, frail and/or havechronic illnesses will receive palliative careservices integrated with their other care inthe setting of their choice.

3. People who are aging, frail and/or havechronic illnesses will receive consistent,seamless integrated care if/when theymust change care settings.

PRINCIPLeS

dying is Part of Living. Dying is anintegral part of living. The healthcaresystem acknowledges that people withchronic illnesses are both living and dyingwith those illnesses. It providesopportunities for them to have good

quality of life throughout the course oftheir illness and, at the same time, theopportunity to prepare for death bytalking about the kind of life and carethey want.

Autonomy and Respect. People who areaging or who are diagnosed with chronicillnesses have the right to be activelyinvolved in their own care plan and tohave a sense of control over theirhealthcare decisions. They are treatedwith respect and given all the informationabout their health, the expected course offrailty or disease, their treatment options,including their likely outcomes and sideeffects, and the services available tothem. They have the opportunity to talkabout their health and the possibility ofdying, to identify their preferred settingof care, and to develop care plans thatalign with their values. They also have theopportunity to change their plans as theircare goals change.

Person and Family1 driven Care. Whensomeone is becoming frail or is diagnosedwith a chronic illness, that person’s healthissues affect at least five other people.

22 III. The National Framework

(CHPCA, 2014) In most cases, familymembers assume an increasingproportion of the person’s care over timeand the need for care can continue foryears. To recognize the impact of illness,an integrated palliative approach is bothperson and family driven. Services aresensitive to the individual’s and family’spersonal, cultural and religious values,beliefs, and practices. An integratedpalliative approach also takes intoaccount the burden that differenttreatment options place on families aswell as their capacity to assume thatburden.

Integrated, Holistic Care. High qualitycare for people who are frail or who havea chronic illness includes regular holisticassessment of their physical, psychosocial,and emotional needs – as well as theintegrated palliative services to meetthose needs. An integrated palliative

approach to care is best provided in thecommunity by an inter-professional team,which includes the person, family caregiversand healthcare providers, supported byexpert hospice palliative care teams.

equitable Access to Health Services. Allpeople in Canada who are aging or whohave a chronic illness have equitable accessto an integrated palliative approach to care,regardless of where they live, their caresetting, their race or culture, and theireconomic status.

effective use of Health Resources. Thehealthcare system is accountable for theeffective use of its resources. An integratedpalliative approach to care helps identifyand respond to people’s physical,psychosocial and emotional needs early,and avoids costly, ineffective measures atthe end of life.

THe BeNeFITS OF THe NATIONAL FRAMewORk

• Increases awareness of an integrated palliative approach tocare.

• Reinforces that dying is part of living.

• encourages consistency across the country, so all Canadianshave equitable access to an integrated palliative approachand can benefit from the services.

• Helps ensure seamless transitions of care across all settings.

• Builds on existing strengths. Across Canada, manyprograms are already using an integrated palliative approach.Driven by a desire to fill gaps in care, these programs haveimproved training for health professionals, developed modelsof shared care and reduced hospital stays. The nationalframework builds on and shares the strategies that theseprograms used to change care.


Desired OutcomesPeople in Canada have care and supportthat respect their values and preferences,and are able to enjoy optimalhealth/wellness until the end of life.

As communities and a society, we are moreaware and accepting of frailty, disease, anddying as part of life. We are more able todiscuss loss and death, and to provide careand support for people who are aging orcoping with chronic conditions.

We have a clear common understanding ofan integrated palliative approach to care.

Healthcare providers in all settings areskilled in integrating the palliative approachinto people’s ongoing regular care.

We have a standard set of relevant measuresand tools to assess whether people arereceiving an integrated palliative approachto care and its impact on their health andwell-being, care experience and use ofhealth services. The same measures are alsoused to set benchmarks and assess progressin achieving our goals across communities,sectors, regions and provinces andterritories.

Providing an integratedpalliative approach to care inall settings of care willrequire a significant changein healthcare culture andpractice – as well as abroader social change inCanadians’ attitudes towardsdying.

We are more able to discuss loss and death, and toprovide care and support for people who are aging or

coping with chronic conditions.


Our RoadmapAchieving these outcomes means a shift inhealthcare practice and culture. Integratingthe palliative approach asks practitioners,organizations, communities and healthsystems to think differently about how wecare for people who are aging or have chronicdiseases.

This roadmap was developed in consultationwith people who are aging or have a chronicillness and with practitioners working inprimary care, chronic disease, home care,long-term care and hospitals. When we askedindividuals and organizations across thecountry what would have to happen to shiftthe system, they identified seven critical steps:

1. Promote a Culture Shift

2. establish Common Language andTerminology that supports dying as part ofliving

3. educate and Support Providers

4. engage Canadians in Advance CarePlanning

5. Create Caring Communities

6. Adapt an Integrated Palliative Approach toProvide Culturally-Safe Care, including withand for Canada’s First Peoples

7. develop Outcome Measures and Monitorthe Change

comfortable talking about death, such asspiritual leaders and funeral directors, and enlistthe support of patient advocacy organizations,such as the Alzheimer’s Society, CanadianCancer Society, the ALS Society, and the Heart &Stroke Foundation. These conversations shouldstart early. If families are able to talk about lossand death with their children, those youngpeople will grow up understanding that death ispart of life. As we start these conversations, wemust recognize that different cultures takedifferent approaches to loss and death.

To shift attitudes within the healthcare system,we must educate and support healthcareproviders to help them overcome their own fearof loss, dying, and death. An integratedpalliative approach to care should be part of allhealthcare providers’ education. In the

We know these actions are doable because they arealready happening across the country.

1. Promote a Culture Shift

Loss and death are part of life, yet wecontinue to be a death-denying society. Thecurrent single-minded focus on cure and ourfear of dying create barriers to holistic,person-centred care. To integrate thepalliative approach into routine care forpeople who are aging or have chronicillnesses, we must shift attitudes – in thehealthcare system and within society at large.In all parts of the healthcare system and allparts of society, we must start theconversation about how loss, dying anddeath are part of life.

To engage Canadian society in thesediscussions, we must use all types of media,including social media and story-telling. Wemust find champions who are already


discussions with their patients about advancecare planning – early and often.

workplace, we must promote best practices inan integrated palliative approach to care andensure that practitioners have the resourcesthey need to provide that care and to have

As part of The Way Forward initiative, weassembled a Lexicon of Terms related to anintegrated palliative approach to care that canform the basis for more discussion about acommon language. To have that languageadopted and used, we must engage people andorganizations across the country in an ongoingprocess to identify the right words and integratethem into education and practice. A number ofprovinces and organizations have already startedthis work. We must also be quick to address anymisperceptions about what the words mean.

2. establish a Common Language

Words are important. An integrated palliativeapproach to care is still new and not wellunderstood. For many people – includingmany healthcare providers – the word“palliative” is associated with the last days orweeks of life. How does an integratedpalliative approach differ from palliative care?To ensure a common understanding acrossthe country, we need a common languageand clearly defined terms. The words we usemust embody dignity, compassion andempathy, as well as respect for differentcultural attitudes towards dying.

This kind of shift requires changes to healthcareprovider education. It also requires champions inall practice settings and in all health professions,as well as tools and resources. To reachhealthcare providers, we must leverage existingtraining initiatives, such as the Educating FuturePhysicians in Palliative and End-of-Life Care(EFPPEC) program, the Learning EssentialApproaches to Palliative and End-of-Life Care(LEAP) program for physicians, as well asnational competencies in palliative care fornurses and social workers led by professionalsand educators in these fields, and adapt them tofocus on an integrated palliative approach tocare. We must make innovative use of differenttools to reach providers, including social mediaand story-telling videos. The skills andcompetencies to provide an integrated palliativeapproach to care should be a requirement forregistration and accreditation.

3. educate and Support Providers

To achieve our goals, practitioners in all caresettings – including primary care practices,chronic disease programs, home care, long-term care, hospitals, prisons and shelters –must have the skills and competencies tointegrate the palliative approach into routinecare. To develop those skills, they mustexamine their own fears and attitudes aboutloss, dying and death and come to terms withtheir own mortality. They must be able to talkeasily about death and dying. They must alsobe able to recognize: when a singular focuson treating or curing patients is no longer thebest thing for their health and well-being;when they can provide integrated palliativecare themselves; and when to consult withexpert hospice palliative care teams or referpatients and families to more specializedservices.

Advance careplanning involvesthinking about thekind of care youwant, talking about itwith others anddocumenting yourwishes in an advancecare plan.


In 2011, the CHPCA in collaboration with HealthCanada released the Speak Up! toolkit as part ofthe larger Advance Care Planning Initiative inCanada. Several provinces, such as BC, currentlyactively promote advance care planning.However more must be done to engageCanadians in ongoing advance care planning.Once again, we need champions at every level inthe healthcare system, in patient advocacyorganizations and in the legal, financial andestate planning world. We can use the SpeakUp! Toolkit. We can also learn from jurisdictionswhere a high proportion of people have anadvance care plan.

As part of the conversation about an integratedpalliative approach to care, we must talk aboutadvance care planning – using all types ofcommunication channels, from social media topublic forums. In those conversations, we mustreinforce that advance care planning is anongoing process – not a one-time discussion.

4. engage Canadians in Ongoing Advance Care Planning

The Way Forward Initiative focused mainly onintegrating the palliative approach into carefor people who are aging or who have chronicconditions. However, a truly integratedpalliative approach to care should actuallystart much earlier – before people becomefrail or ill – with a strong focus on advancecare planning.

Advance care planning – the conversationsabout what people value and the kind of carethey want – should begin when they are well,and then continue throughout their lives. Itshould be grounded in a person-centred,holistic approach and empower people. Bytalking openly and often about their healthand treatment options, people become moreinvolved in their care and better able to makeinformed decisions.




Conversation Starters for Healthcare Providers

• What do you understand about your illness or what’s happening to you?

• Do you have a living will, advance directive, or advance care plan? Do you know what I meanby those terms?

• If we need to make decisions about your care and you were unable to speak for yourself,whom would you want me to speak to about your care?

• Have you talked to anyone about your wishes or preferences for healthcare decisions that maycome up (e.g., resuscitation)? May I ask what you discussed?

• What is important to you as you think about this topic?

• Do you have the information you need to make decisions about the kinds of treatments youdo or do not want if you become very sick with a life-threatening illness?

From Speak Up! Just Ask: Talking to Patients and Families About Advance Care Planning

need some help and support. It will be up tolocal healthcare organizations to identifyfamilies, populations and/or communities thatmay struggle to fulfill this role. It is also up toprovincial/territorial and regional health systemplanners to work with local healthcare providersto provide the support required.

5. Create Caring Communities

With an integrated palliative approach tocare, most people in Canada will receive thepalliative services they need - such as openand sensitive communication about theirprognosis, advance care planning,psychosocial and spiritual support, and painor symptom management – from theircurrent providers in the settings where theyreceive care, such as primary care practices,chronic disease management programs, homecare and long-term care homes. Only thesmall proportion of people with complexneeds will require expert hospice palliativecare services.

While some of the services will be providedby professional healthcare providers, somewill be provided by family caregivers andvolunteers. All parts of the community will beinvolved in creating caring environments thatcan provide an integrated palliative approachto care. Most communities are ready, willingand able to take on this role, but some may

Most communities areready, willing and able

to take on this role, butsome may need help

and support.


6. Adapt an Integrated Palliative Approach to Care with and for Canada’s First Peoples

wanda had been living with diabetes and heart

disease for a number of years. Her care was managed

mainly by the community health workers in her First

Nations community, with some support from fly-in

physicians and a hospital that was several hundred

miles away. When her condition worsened and could

no longer be managed in the community, she was

sent to the hospital where she was diagnosed with

end-stage heart failure. Far from home and family,

Wanda felt anxious and ill at ease. The care team at

the hospital provided treatment and tried to have

conversations with her about side effects of

treatment, quality of life, loss of independence, and

the impact of worsening symptoms. However, Wanda

felt overwhelmed by the information. She asked for

an elder to help her understand, but the hospital did

not have one on the care team. When her family did

come to visit, they expected to stay the whole day

and to have music and a traditional ceremony, but the

room in the hospital wasn’t large enough to

accommodate everyone. The family felt rushed and

frustrated, while the hospital staff and other patients

complained about the crowd and the noise, especially

after visiting hours. In spite of her treatment, Wanda

continued to experience a lot of pain and struggled

to breathe even when lying in bed. Without the help

of a family member or interpreter, she had trouble

communicating her needs to the team members who

continued to focus on treating the heart failure

without giving a lot of attention to her pain and other

symptoms or her socio-cultural and spiritual needs.

Despite the fact that Wanda was deteriorating,

nothing was said to the family about her possible

death. When she did die, family members felt that

they had been given false hope and not treated with

respect. Even after her death, the hospital struggled

to provide culturally safe care. In Aboriginal culture,

the body is not moved until all the family has come

and the body is arranged in a certain way. However,

leaving her body in the hospital bed for several hours

would have contravened hospital policy.

In implementing an integrated palliativeapproach to care, we must includeapproaches that reflect the unique needs,diversity and jurisdictional realities ofCanada’s First Peoples, particularly in therural, remote and isolated regions of Canadawhere most reside. (Kelly L, 2009)

The Constitution of Canada recognizes threegroups of Aboriginal Peoples – First Nations,Inuit, and Métis – each with unique heritages,languages, cultural practices, and spiritualbeliefs. Both among and within thesepopulations, there is broad diversity as well asshared experiences and challenges that mustbe considered when adapting an integratedpalliative approach to care for Canada’s FirstPeoples.

For example, more than 50 percent ofCanada’s 1.4 million First Nations, Inuit andMétis live in rural, remote or isolatedcommunities, and studies show that healthstatus declines with distance from urbancenters. (Saint Elizabeth Foundation) There isa need, therefore, to develop comprehensive,integrated and affordable ways to deliver anintegrated palliative approach that work inrural and remote areas. First Nations, Inuit andMétis in Canada experience adisproportionate burden of ill health(Castleden et al., 2010) and factors such aslower incomes, inadequate housing, and thelegacy of the residential school era have astrong influence on their health. (SaintElizabeth Foundation) At the same time, theirpopulations are growing rapidly, and there isan urgent need to improve their quality ofliving, including enhancing access to culturallyappropriate, integrated palliative careservices. (Castleden et al, 2010)


Most First Peoples prefer to pass away in theirhome community and not in a hospital far fromfamily and friends where there may be languagebarriers or a lack of cultural safety. However,communities often have limited resources toprovide care for people nearing the end of life.The federal government plays a significant rolein the delivery of health services and theprovision of extended health benefits for someFirst Peoples of Canada. Under Health Canada’sFirst Nations and Inuit Home and CommunityCare Program, palliative care is considered“supportive” care so there is no fundingspecifically allocated for these services. For manyof Canada’s First Peoples, the fragmentationbetween federal and provincial healthjurisdictions and health services makes it difficultto coordinate health services and follow-up. Toadapt an integrated palliative approach to carefor Canada’s First Peoples and provide seamlessservices, it is essential to understand andmanage these jurisdictional issues.

In terms of strengths, First Nations, Inuit andMétis in Canada are increasingly involved inhealthcare systems as care providers, in local andregional healthcare systems, in health authoritiesand in governments. They are innovators indeveloping new and effective healthcaresolutions. They are also able to contribute bestpractices in cultural competence at all levels – ascare providers, on care teams, withinorganizations, in governance and in programand policy related practices. In fact, severalprograms in Canada and abroad have developedinnovative community-driven and nation-basedapproaches, building on the contributions andingenuity of First Peoples.

When adapting an integrated palliativeapproach to care with and for AboriginalCanadians, healthcare systems and providersshould take several key steps:

• Recognize Canada’s First Peoples as partners intheir care: ensure that models of care do notsee Canada’s First Peoples as solely recipientsof care, but as true partners in thedevelopment and delivery of their care;

• Engage local leaders, including communityresource people, Elders and cultural advisors asfull recognized members of the healthcareteam at all levels, and build on their knowledgeto ensure culturally appropriate models of careand manage potential “professional bias”;

• Use a community-based development processto enhance local capacity: start by ensuring allrelevant structural elements are in place andcoordinated, and then develop local caremodels, based on needs, using a process thatworks for each setting and leveraging regionaland provincial/territorial capacity as needed;

• Develop culturally-safe, holistic tools andresources (e.g., assessment tools) that includephysical, emotional, spiritual and intellectualaspects of health and well-being within a familyand community context: ensure flexible andtimely access to these tools and resources.


The Way Forward reviewed measures (bothhealth and social measures of quality of life) usedto monitor progress in palliative care across thecountry. In many cases, health systems andorganizations may already be gathering data onthese measures that can be used to assess theimpact of an integrated palliative approach tocare (e.g., through tools such as InterRAICommunity Health (CHA) Assessment Form, thePalliative Performance Scale, and the PalliativeOutcomes Scale).

Some of the measures can eventually be used toset standards for an integrated palliativeapproach to care. Champions in each sector canthen work to integrate the standards intopractice. With appropriate measures, we coulddocument effective programs and share bestpractices and lessons learned.

7. develop Outcome Measures and Monitor the Change

To determine whether we are successful inproviding an integrated palliative approach tocare, we need specific measurable goals todrive the system-wide shift in practice, as wellas ways to monitor changes and identifybarriers to change. In addition to measuringwhether palliative services are beingintegrated into routine care, we want tomeasure the impact of those services onpeople, on providers and on the healthcaresystem.

• Are people who are elderly or have achronic condition more satisfied with theircare?

• Do they have a plan of care?

• Do they have a greater sense of control andmore support in making their caredecisions?

• Are they enjoying better quality of life?

• Are providers more satisfied with the carethey provide?

• Did they have ongoing conversations withpeople about their prognosis and theirchoices?

• Do providers find it easier to communicatewith patients or clients?

• Are people able to receive care in thesetting of their choice?

• Is the system seeing less use of hospital andemergency services in the last weeks ormonths of life?

• Are people receiving fewer unnecessaryinterventions near end of life?

The Way Forwardreviewed measures beingused to monitor progress

in palliative care across the country.

31IV. The Framework in Action on the Front Lines

IV. The Framework in Action on the Front Lines

Shifting the healthcare system from its currentsingular focus on treating illness to anintegrated palliative approach to care in thecommunity requires action at all levels andwithin all sectors and settings.

If people who are frail or have a chronic illnessand their families are going to receive the carethey need in the setting of their choice, thenall parts of the healthcare system must createthe conditions that support the shift to anintegrated palliative approach to care in thecommunity.

Ideally, the shift to an integrated palliativeapproach to care will happen at all levels in thehealthcare system - the federal,provincial/territorial or regional healthplanning levels, including regions where FirstNation, Inuit and Métis peoples areresponsible for directing, managing anddelivering a range of health services, and atthe local or care setting level.

However, front-line organizations do notneed to wait for federal, provincial/territorial or regional action. An integratedpalliative approach can start anywhere – andshould start everywhere – in the system.

At all levels and in all settings, it is possible tocreate the conditions that support the shift toan integrated palliative approach to care in thecommunity. Creating these conditions involvescertain key activities, including:

• Developing policies that help shapeorganizational culture and actively promotean integrated palliative approach to care;

• Establishing a shared vision and goals, and acommon understanding (language) of thepalliative approach to care;

• Setting clear expectations for all providersand staff and how their practice shouldchange;

• Providing ongoing education so staff developthe competencies to integrate the palliativeapproach with the other care they provide andto provide culturally sensitive care;

• Developing tools and guidelines that helpproviders integrate the palliative approach tocare, including assessment tools that helpproviders in each setting identify the clients,residents or patients who would benefit froman integrated palliative approach to care;

• Forging strong relationships with otherservices and settings that can help delivercertain palliative services and/or ensureseamless transitions for individuals and theirfamilies if they have to move betweensettings;

• Communicating clearly with healthcareproviders, the public and patients about thepalliative approach to care and how it canenhance quality of life as well as both livingand dying;

• Being accountable for the quality and impactof this shift in practice by tracking andmonitoring that individuals and families haveequitable access to an integrated palliativeapproach to care and assessing the impact ofthat care on their health and well-being, ontheir satisfaction with care, on providersatisfaction, on the organization and on theuse of other health services.

32 IV. The Framework in Action on the Front Lines

Federal, Provincial andTerritorial Governments: Develop Policies andSupport the SystemLeadership can come from the governments that plan, fundand manage healthcare systems. The federal, provincial andterritorial governments2 are all critical partners in theframework for action. Strong leadership can also come fromCanada’s First Peoples, who are increasingly taking greatercontrol over healthcare services in their communities, asillustrated most recently by the historic transfer of all HealthCanada programs and services to B.C. First Nations (via thenew First Nations Health Authority).

Many jurisdictions that have made progress in developing anintegrated palliative approach to care have had stronggovernment support for the change. In regions with largeindigenous populations, such as New Zealand and CentralAustralia, local (community-driven) leadership andengagement have been fundamental to their success.

The following are the keys actions at this central level:

1. Adapt/adopt the framework’s vision, goals andprinciples

2. Establish policy expectations for all care settings andproviders, such as:

• All patients will have an advance care plan;

• All patients will have access to an integrated palliativeapproach in the setting where they are receiving care;

• All settings will have the capacity to provide high qualityhospice palliative services integrated with other care;

• More care providers will have the skills to provide anintegrated palliative approach to care;

• Specialized palliative care units and hospice residential bedswill be available to individuals with complex symptoms andend-of-life care needs that cannot be managed in othersettings;

• All communities and settings will develop approaches tointegrating palliative care that are culturally sensitive and

2 Provincial and territorial governments are responsible for health services for their citizens. In addition, the federal government is alsoresponsible for providing some health services directly: it manages the fifth largest healthcare system in the country, providinghealthcare for First Nations and Inuit communities, the Armed Forces, the RCMP, inmates in federal prisons, and veterans.

The End-of-Life CareStrategy for England(2008) guides care andmandates the use ofprograms such as theGold StandardsFramework and theLiverpool Care Pathwayfor the Dying Patient.

Australia hasdeveloped a nationalpalliative care strategy(2010) as well asnational guidelines fora palliative approachfor aged care in thecommunity setting(2011), while theNorthern TerritoryGovernment inAustralia—where about34% of the populationis indigenous—hasadapted the nationalstrategy for its regionin close partnershipwith aboriginal healthworkers and socialservice organizations.


meet local needs, including the needs ofCanada’s First Peoples;

• More deaths will occur at home or in othersettings where people receive care, such aslong-term care homes, and fewer will occur inintensive care units.

3. Develop the tools that communities need toassess their current capacity to provide anintegrated palliative approach to care, toidentify any gaps (e.g., knowledge, skills,workforce, training) and to build capacitysuch as: patient assessment tools, advancecare planning tools, care plans, informationand resources for family caregivers andvolunteers).

4. Create legislation/regulations, whererequired, to ensure all settings areaccountable for implementing the policy.

5. Establish guidelines and standards of carethat are consistent with the national norms ofpractice for hospice palliative care (CHPCA,updated 2013) and reflect specificpopulations’ needs for an integratedpalliative approach to care. Governmentscould make these standards a requirementfor accreditation.

6. Consider developing remuneration systemsand incentives to support the delivery of anintegrated palliative approach. One of themain reasons that primary care physiciansoften do not stay involved in their patients’end-of-life care and, instead, refer clients toexpert palliative care services even whenthey do not require specialized care, is thatcurrent remuneration systems do notcompensate them for the time required toprovide an integrated palliative approach tocare (e.g., to take phone calls from homecare nurses and long-term care staff, toattend care planning conferences). In manycases, providing incentives may involvereallocating or leveraging existing resourcesrather than providing new resources. Some

The United Kingdom hasdeveloped the GoldStandards Framework, asystematic evidence-based approach tooptimize end-of-life caredelivered by generalistproviders and coordinatecare across settings. Theframework is now used toguide education, policiesand programs across thecountry. It focuses onhelping providers identifypeople earlier, talk tothem about their wishes(Advance Care Planning),provide care that alignswith their wishes andimprove coordination andteamwork.

Federal, provincial, andterritorial governmentsare all critical partners

in the framework foraction.


incentives can take the form of supports thatreduce the burden on primary careproviders, such as, providing an on-callservice and after hours or weekend service.Federal and provincial/territorialgovernments may also consider fundingpilots of an integrated palliative approach tocare with patients with a particular chronicdisease in order to demonstrate its impactand outcomes.

7. Support communication across settingsand seamless care transitions. Whensomeone has to move care settings (e.g., gofrom home to a long-term care facility, orfrom home or long-term care to hospital orresidential hospice), it is essential that their

advance care plan, goals of care and otherinformation move with them in a timely way.Effective communication between and acrosssettings is key to seamless care transitions.Jurisdictions need tools and processes tosupport effective communication andmanage any wait times between transitions(e.g., protocols, electronic medical records,collaborative care planning meetings).

8. Support education of healthcare providersin all settings. Education resourcesdeveloped federally, provincially orterritorially can help reduce costlyduplication at other levels in the healthcaresystem and promote more consistency inhow an integrated palliative approach isunderstood and delivered. Governmentsshould collaborate with the healthprofessions to ensure an integrated palliativeapproach and palliative care skills areincorporated into professional education.There are already strong education programsdeveloped in Canada, such as the LearningEssential Approaches to Palliative and End-of-Life Care (LEAP) program developed byPallium Canada. Governments could alsoprovide funds to support ongoing palliativeeducation for providers in all care settings.

9. Develop a communications strategy.Different techniques and forums should be

A program in Tasmania was able to demonstrate thatit reduced hospital admissions from long-term carefacilities by 75%, which more than covered the costof piloting its Living Well and Dying Well project in anumber of homes for the aged. (CHPCA, 2013)


used to ensure the public and patientsunderstand an integrated palliative approachto care. Effective communication will helpcreate and reinforce a commonunderstanding of an integrated palliativeapproach to care. As part of thecommunications strategy, we can sharesuccess stories from communities that haveworked across settings and sectors tosupport people who are aging or have achronic illness to receive integrated palliativecare in the setting of their choice.

10. Establish the indicators and monitoringsystem to assess progress and evaluateimpact. For example, Silver Chain inAustralia was able to compare the outcomesof those who received its services with thosewho did not, and to demonstrate that its

program is cost effective. (CHPCA, 2013)

Indicators could include measures ofindividual satisfaction and outcomes, familysatisfaction, provider satisfaction andresource utilization, such as:

• number of individuals who have developedadvance care plans, named a substitutedecision maker and established goals of care;

• number who have updated those plans withinthe last six months;

• staff resources required to provide care;

• use of emergency services;

• hospitalizations including length and frequencyof hospital stays in the last six months of life;

• location of care at time of death;

• cost of care;

• and costs avoided.


Regional ProgramPlanners: Create a SeamlessNetwork of ServicesRegional program planners play a pivotal role in developingintegrated networks of services that meet individuals’ andfamilies’ needs and ensure seamless transitions betweensettings, including developing the expert hospice palliativecare teams and programs that will support an integratedpalliative approach to care. The following actions will helpregional programs promote an integrated palliativeapproach:

1. Make palliative care a core service and uniqueadministrative program. Start by making palliative carea distinct program with the same stature as otherprograms (e.g., cardiac care, renal programs, cancercare) and with strong support from senior management.All resources, such as hospital-based palliative care units,become part of the specialized regional program ratherthan being reserved only for patients in each hospital.

The specialized regional palliative care program shouldbe part of the larger discussion about strategic directionin the healthcare system as well as how to support anintegrated palliative approach in all other settings.Expert hospice palliative care programs can help careteams in a variety of settings integrate a palliativeapproach to care and provide seamless transitions.

2. develop specialized inter-professional palliative careteams. Winnipeg has developed inter-professional teamsmade up of a physician, clinical nurse specialists,community nurses, a palliative care coordinator andpsychosocial support in each of the four areas in the city.Their role is to support generalist care teams in eachsetting; however, practitioners in each setting need tobecome better skilled and more confident as theyprovide a significant amount of an integrated palliativeapproach to care.

“In Winnipeg, we lookedat who was doing moreformal or specializedpalliative care. We nowall work together as aprogram. We haveworkshops and othertraining to enhance ourskills, and twice a monthwe have teamconferences to discussdifficult cases. We havealso been able toimprove flow through thepalliative care beds in theregion because we areable to decide who getsthose beds as opposedto care at home or inanother setting based ontheir needs. We canfacilitate transfers backto long-term care andhelp practitionersprovide [an integratedpalliative approach] athome and in long-termcare facilities.” (Personalcommunication: MikeHarlos, 2013)

Fraser Health in BC recentlyintroduced a Medical Ordersfor Scope of Treatment (MOST)that provides tools andsupports for physicians to givepatients prognosticinformation and todocument/describe theiradvance care planningdiscussions with patients. Mostphysicians agree that thesediscussions should happen;however, most do not feel thatthey should be the ones tohave that conversation.(CHPCA, 2013)


3. establish a single central number to call toaccess an integrated palliative care programand/or team, staffed 24/7 that provides virtualsupport for healthcare practitioners. Thisservice will provide consultation and advice forproviders in all settings providing anintegrated palliative approach. In most of theinnovative models of integrated palliative carein place now, this service is provided by thehospice or hospital-based palliative care unit,which is also responsible for developing andmaintaining the expert palliative care teams.

4. Build relationships with all sectors andsettings where people with chronic conditionsreceive care: primary care, home care, long-term care and acute care. For example, inNorth Haven, New Zealand, the centralspecialized hospice program providesconsultation, support and education forprimary care providers in the community andin hospital. These relationships will help ensureseamless transitions between settings.

5. Identify core competencies and educationprograms to enhance the capacity ofpractitioners in all settings – primary care, homecare, long-term care, acute care and others – tointegrate key palliative services with other care.The region can set expectations, such as: allphysicians, nurses and pharmacists should havecertain core competencies in an integratedpalliative approach to care. Some jurisdictionshave made training in an integrated palliativeapproach available to all physicians in family

The central hub and spoke approach used in North Haven, NewZealand, encourages standardization of care, equal access across thedistrict and economical use of resources. A specialist nurse educatorand advisor works to increase the capacity of primary care providersand break down silos between services. The model aims to have mostend-of-life care provided by primary care providers, with specialistpalliative care services taking on complex cases. (CHPCA, 2013)

With the increasing reliance onspecialized palliative care teams,there has been a general“deskilling” of primary,community and acute carepractitioners. As a result, manylack confidence in their ability toprovide care at end of life. Theyneed information and educationas well as the support ofspecialized palliative careservices that can help assess andidentify those patients who canbe cared for by their ownproviders in the settings wherethey are as well as those whoneed more complex, specializedcare. (CHPCA, 2013)


In Central Australia, the program has a strong focus on community outreach toAboriginal care workers andnon-Aboriginal workers whowork with Aboriginalcommunities. Innovationsinclude a one-day workshopfacilitated by an AboriginalEducator on how to workrespectfully with Aboriginalclients. (CHPCA, 2013)

practice, oncology and internal medicine. In BC,for example, family physicians and their officeassistants are expected to complete a moduleon how to manage patients and the resourcesavailable and, in some areas of the province, allacute care nurses and home care staff areexpected to have basic or enhanced educationin providing palliative services. (Personalcommunication: Carolyn Tayler, 2013)

6. develop guidelines, algorithms and carepathways for integrated palliative care foreach setting. The guidelines should help eachsector put into practice any provincial policiesand standards, while taking into accountregional needs, resources and services. Thesetools should help staff in each setting to workwith individuals to develop advance care plansand be ready to revisit those plans wheneverthe person’s health deteriorates or the personchanges care settings.

7. enhance capacity to provide culturallysensitive care across the region. To providean integrated palliative approach, healthcareproviders need the capacity to adapt servicesto meet the needs of both culturally diverseand geographically remote communities. Forexample, regional planners could work withdiverse Aboriginal and diverse ethniccommunities to adapt guidelines, algorithmsand care pathways to provide culturallysensitive services. (Con, 2008) Advance careplanning, based on the person’s beliefs andvalues is key.

Regional planners can also help settings andpractitioners develop effective strategies todeliver an integrated palliative approach toindividuals in remote communities, such aseducation and use of technology (e.g.,telephone, telehealth), as well as intensivetraining in cultural safety and competency, witha particular focus on the cultural values of FirstNations, Inuit and Métis groups. Fundamentalto successful cultural competency is the

39iv. the framework in action on the front lines

Two hospice-based programs inNew Zealand—Arohanui Hospiceand Otago Community Hospice—have been particularly effective inengaging and “reskilling” familyphysicians in palliative care. Theyhave also developed culturallysensitive services that meet theneeds of the aboriginalindividuals and their families.(Innovative Models of IntegratedHospice Palliative Care, page 32)

meaningful engagement of Canada’s FirstPeoples in designing and implementingprograms at all levels — as care providers,members of care teams, part of organizationsand providing governance.

8. work with chronic disease managementprograms. The goal is to improve their abilityto deliver some key palliative services, such asadvance care planning, goals of care andsymptom management, early in the course of

a chronic illness. For example, Winnipeg’sregional palliative care program works closelywith the ALS program and is starting todevelop an effective working relationship withcardiac care and COPD. Fraser HealthAuthority in BC is working alongside renal,cardiac and critical care programs to developprotocols and tools that the teams can use intheir everyday practice to talk with people andtheir families about goals of care and advancecare planning. The process is working: therenal program now embeds a palliativeapproach in the care provided to people withrenal disease. (Personal communication:Carolyn Tayler, 2013)

9. Monitor the impact. Regional planners mayestablish indicators that could be used acrosssettings to assess both progress inimplementing an integrated palliativeapproach and its impact on quality of life,seamless care transitions, satisfaction, cost ofcare and use of other healthcare resources.

[In an integrated palliativeapproach] it’s important torecognize everyone’s strengths.Our palliative care consultants arenot the renal or critical careexperts. Our program is movingtoward a model of education thatis less didactic and more roleplaying: working with staff in all[programs] to understand theirown attitudes to end of life andthe tensions they feel aboutwhat’s happening withinhealthcare system.

The practitioners themselves arerealizing that they need the basicskills to look after their patients,and that not everyone needsspecialized services when theyare nearing the end of life.(Personal communication: CarolynTayler, 2013)


Care Settings and Providers: Find Practical Ways to Deliver an IntegratedPalliative Approacheach sector and setting will face different challenges trying to deliver integrated palliative care.

LONG-TeRM CAReMost residents in long-term care homesare highly vulnerable. They are often frailor have at least one chronic disease. Most(57%) will have Alzheimer’s disease and/oranother dementia. (Canadian Institute forHealth Information, 2010) And 70% of allindividuals with dementia will die in a longterm care facility. (Mitchell et al., 2005)

Because people in residential facilities arevulnerable, death is common. According toCIHI reports on location of death in

western and eastern provinces, between 16%and 27% of deaths occur in long-term carefacilities. (Canadian Institute for HealthInformation, 2007 and 2011) In one long-termcare home in Ontario, about 30% of residentsdie each year. (Personal communication,Deborah Randall-Wood, 2013) Theseresidents would prefer to die in their “home”– the long-term care residence or facility –rather than be hospitalized, and they wouldprefer to receive integrated palliative carefrom their regular care providers. Staff inlong-term care have developed goodrelationships with residents and know themwell. They would prefer to provide care atend of life themselves rather than havespecialists “parachuted in.”

However, long-term care facilities face anumber of challenges delivering integratedpalliative care – not the least of which are thehigh rates of dementia among residents. Itcan be difficult to provide care that reflectsthe wishes and best interests of residents whomay no longer be able to direct their care oreven communicate that they are in pain.Other challenges include: tight budgets; strictstaffing ratios; and extensive regulatoryrequirements and heavy reliance on personalsupport workers who are only required tohave minimal training and who may have hadrelatively little education or experience inproviding palliative services. Long-term carefacilities can take a number of practical stepsto overcome these challenges:

1. Build strong links with specialized hospicepalliative care programs and othercommunity agencies. The services hospicepalliative programs provide for people dyingat home, such as volunteer visiting, should alsobe available for people in long-term carefacilities. Trained volunteer visitors can takepressure off staff and enhance quality of lifefor dying residents. The long-term care facilitycan also take advantage of education availablethrough expert hospice palliative careprograms and arrange for it to be delivered ina way that makes it accessible to staff withouttaking too many away from front-lineresponsibilities (e.g., 15-minute lunch-and-learn sessions).

A strong relationship with expert hospicepalliative services also means the long-termcare facility can access consultation services ifrequired; the goal is to be able to continue tocare for the person in the long-term facilitywith support from experts.

The facility could also develop strong linkswith community organizations, such as theAlzheimer Society, which may be able toprovide training and support in providing anintegrated palliative approach for residentswith dementia.

2. Modify staffing strategies when a resident isnearing end of life. On average, a personalsupport worker in a long-term care facility isresponsible for providing care for 10 residentsat any given time. To meet the needs ofresidents nearing end of life who may requiremore staff-intensive care, long-term carefacilities should modify their staffingstrategies; for example, by reducing the dailycaseload from 10 to 8 residents for a personalsupport worker who is caring for someonewho is dying and asking other staff to cover 11 or 12 residents for that period of time.

“Lakeland Long-Term CareHome maintains palliative carecarts that contain all thesupplies care providers willneed. Staff then spend lesstime getting supplies andmore time with residents. Thefacility also provides specificbasic instructions on how toprovide care - for example,what to do to lessen pain,how to reposition people,how to clear the airway, howto set the fan to blow onsomeone’s cheek, how toprevent bed sores – onlaminated cards in a “recipe”box on the cart. It takes only afew seconds for staff to checka card and then know what todo.” (Personalcommunication: DeborahRandall-Wood, Lakeland Long-Term Care, 2013)



3. ensure tools and guidelines are practical,accessible and easy to use. Long-term carefacilities are very busy places. Staff faceextensive time pressure. Every effort shouldbe made to put the supplies and informationrequired to provide integrated palliativeservices at hand, in a form and language thatis accessible to staff who have a range ofeducation backgrounds and literacy skills.

4. Integrate hospice palliative care educationinto mandated education programs. Long-term facilities are highly regulatedenvironments. Staff are already required tocomplete extensive training on many careissues. All staff are required to have basiceducation about care at the end of life: whathappens when people are dying, what theperson will look like, and how to talk tofamilies. However, they may not beknowledgeable about all the aspects of anintegrated palliative approach to care. It maybe burdensome for facilities and staff to findthe time for this education. Instead, somefacilities use a combination of palliative-carespecific and integrated education. Staff alsoneed education on how to provide culturallysafe and appropriate integrated palliative carefor people of different cultures in their facilityand/or community. Long-term care homesproviding care for First Nations, Inuit and/orMétis individuals should link with Aboriginalservices in the community to ensure theirservices are culturally sensitive and safe.

To change the culture within a long-term carehome, it is essential that education go beyondthe people who provide direct care to includehousekeeping staff, dining room staff,gardeners, volunteers – everyone. Integratingthe palliative approach to care in the long-term care setting requires a significant culturechange. It involves listening to residents –including those with dementia – andrespecting their wishes.

5. Collect data and enhance capacity to“code” palliative residents and monitorimpact of an integrated palliative approach.Funding for long-term care facilities is oftencalculated using a complex formula based onthe acuity of residents. In Ontario, thatinvolves collecting 350 data points on eachresident every three months. The data

“Lakeland Long-Term Careensures all staff have receivedbasic education about care atthe end of life and thenincorporates integratedpalliative care into othertraining. For example, trainingon nutrition and diet includesthe nutrition needs ofresidents who are frail ordying as does training onmouth care. In each type oftraining staff are asked toconsider ‘how would this bedifferent for someone whocould die at any time or isnearing end of life?’ “(Personal communication,Deborah Randall-Wood, 2013)


collection and coding must be thorough tocapture the heavy care needs of people withchronic conditions, particularly those in the lastweeks or months of life. Collecting thisinformation could help facilities make a strongcase for more funding.

Data collection can also help long-termfacilities monitor and assess the impact of anintegrated palliative approach to care. Tomeasure the extent to which the facility isproviding high quality integrated palliativeservices, it could track indicators such as:

• the number of residents who have up-to-dateadvance care plans;

• resident satisfaction with care and location ofcare;


• hospitalizations;

• use of staff resources;

• the proportion of residents who die in the homerather than being hospitalized at time of death.

6. Share best practices within the long-termcare sector. The long-term care sector is aclose community. People are connected andalready meet in chat rooms to discuss commonchallenges and issues. The sector shouldroutinely collect and share information on bestpractices in palliative care in long-term care –perhaps through regular workshops. Thisvenue would provide an opportunity to discussthe challenges of integrating a palliativeapproach in long-term care settings.

7. Talk to families. In many cases, families are notaware of the capacity of long-term carefacilities to provide an integrated palliativeapproach. Long-term care facilities should letfamilies know the range of services theyprovide, including symptom management andpsychological support and that the person cansafely stay in the home, rather than beingmoved to a hospital or residential hospice.

In the UK, carehomes are organizedinto learning clusterswhere they candiscuss any issuesthey face providinghospice palliativecare services forresidents. (CHPCA,2013)

44 iv. the framework in action on the front lines

HOMe CAReMany home care programs provide palliativecare services, and many have formal palliativeprograms or teams. They are making aconcerted effort to provide more care at homeand reduce the pressure on acute carehospitals and thus lessen the cost to healthcaresystems. In most cases, formal palliative homecare teams will not be assigned until a personhas been deemed palliative, with no more thansix months to live. However, this criterionmeans that many home care clients who coulddie suddenly because of frailty or a chronicillness are not benefiting from an integratedpalliative approach to care. To ensure all clientshave access to palliative services integratedwith their other care as they age, the homecare sector may consider the following actions:

1. Implement policy and services guidelinesto support integrated palliative approach

• Increase access to integrated palliative careby reassessing the eligibility criteria forpalliative services. Many home care programs

only designate clients as eligible for palliativeservices when they have been assessed asbeing in the last six months of life. The sectorshould revisit those criteria, adapting it toreflect the changing ways that Canadians nowdie and ensuring an integrated palliativeapproach is available to clients whose healthcould deteriorate quickly and who might diesuddenly.

• Respond to changing client needs byimplementing flexible service provisionguidelines. As clients age and their healthdeteriorates, they may need more intensiveservices. Home care programs could considerstrategies to make services more flexible suchas, allowing for more hours of service andproviding access to a broader healthcare teamthat can address clients’ and families’increasing complex needs.

2. develop assessment tools to proactivelyidentify clients who could benefit from anintegrated palliative approach. Asignificant number of people referred tohome care have recently been dischargedfrom the hospital. Some, such as those whohave had cardiac procedures, are at high riskof being readmitted or of dying suddenly. Anassessment tool would help home careprograms identify these individuals. Theprogram could then assign these clients tonurses who are skilled in both an integratedpalliative approach and the person’s diseaseor condition. The nurses could assist withadvance care planning and ongoingassessment to ensure clients continue toreceive the hospice palliative care services –including symptom management – they wantand need integrated with their other care.

Another approach is to ensure all home careproviders are trained in the components ofan integrated palliative approach so thatthey can apply these skills in the care of allclients.


3. develop program expectations to changefront-line service provider behaviour. Forexample, all clients will have an advance careplan, providers will engage clients indiscussions about their prognosis, treatmentoptions, and the benefits and risks associatedwith these options.

4. Provide targeted education on an integratedpalliative care approach and culturallysensitive care.

• Dedicated palliative home care teams alreadyreceive extensive education in end-of-life care.However, other home care staff will needappropriate training in an integrated palliativeapproach to care, particularly given the fact thatit is now possible to care for people with muchmore complex illnesses at home. Educationshould take into account the roles andresponsibilities of primary care physicians whocontinue to manage clients’ overall care. Whilephysicians will lead a client’s care, home care

coordinators may be responsible for some of theadvance care planning conversations with clientsas they work with them to develop their homecare plans. Personal support workers could alsobenefit from education that helps them provideemotional support for clients and for familymembers.

• Attitudes towards death and care at the end oflife are often strongly rooted in culture. Homecare staff that are caring for Aboriginal Peoples,or people of diverse cultures and their families,will need education to be able to provideculturally safe and appropriate palliative servicesintegrated with usual care. This education mustrecognize the broad diversity that exists amongindividual First Nation communities acrossCanada, and reflect each community’s identifiedneeds and priorities.

5. develop practical tools and guidelines.Professional home care staff (nurses, casemanagers) will benefit from access to easy-to-


use tools and algorithms to help them deliverintegrated palliative care, such as tools toassist in advance care planning,communication cues, descriptions of both thebenefits and risks of different treatments forchronic conditions, and criteria and remindersystems that trigger teams to revisit care plansand goals of care. Non-regulated staff (e.g.personal support workers), many of whomhave varying education backgrounds andliteracy skills; will need easy-to-use tools andresources to help them incorporate anintegrated palliative approach into everydaypractice.

6. Build strong links with primary care teams,chronic care teams, specialized palliativecare teams and hospice programs. Homecare programs will be providing an integratedpalliative approach collaboratively with theclients’ primary care or chronic care teams, so

it will be important to develop strong linksand effective ways to communicate withinthose teams, particularly with the leading carephysicians. Home care programs will alsoneed to develop strong relationships withexpert hospice palliative care teams so theycan seek their advice in the care of clients withcomplex needs and make appropriatereferrals if the person’s care can no longer bemanaged effectively at home.

Home care services can also help clients andfamilies connect with volunteer visiting as wellas other services provided by a local hospiceor regional palliative care program or othercommunity programs.

7. Support quality and accountability byidentifying and tracking indicators of anintegrated palliative approach. Home careprograms can play an active role in helpingthe healthcare system assess the impact of anintegrated palliative approach on clientoutcomes, provider satisfaction and use ofhealthcare resources. Indicators could include:

• client satisfaction;

• management of pain and symptoms;

• access to psychosocial and spiritual support;

• provider satisfaction;


• hospital readmissions – including frequency andlength of stay;

• cost of care;

• and cost savings.

It will be important to developstrong links and effective ways

to communicate within careteams, particularly with the

leading physicians.


HOMe CARe IN FIRSTNATIONS ANd INuITCOMMuNITIeSHealth Canada’s First Nations and Inuit Homeand Community Care Program provides fundingfor basic home and community care services toFirst Nations communities and Inuit settlements.Under this program, palliative care isconsidered “supportive” and no funding isspecifically allocated to provide these services.Although the common Aboriginal preference isto die in the home community, limitations incommunity resources hinder this option inremote areas. (Saint Elizabeth Foundation)

A number of innovative programs are underwayin Canada and abroad, focused on buildingpalliative care capacity within communities andamong both Aboriginal and non-Aboriginal

workers. These leading and promising practicesall share one critical success factor—they arecommunity-built and driven, with indigenouspeoples leading the design, planning andimplementation of curriculum and materials toensure inclusion of appropriate cultural traditions,content and competencies. These models arefounded in the needs and processes that work fortheir particular settings, pulling in regional andgovernmental capacity as needed.

For example, with funding from the CanadianInstitutes of Health Research, four First Nationscommunities in Ontario and Manitoba, along withAboriginal health organizations and a team ofresearchers from Lakehead University, areworking to improve end-of-life care in FirstNations communities. They are developingpalliative care services and knowledge withintheir communities, including a series of brochures

and videos on end-of-life care – that are nowavailable online*. Withthese resources, FirstNations healthcareproviders will beempowered andsupported to becatalysts forcommunity change indeveloping localpalliative careprograms. Lessonslearned from thisproject have thepotential to be appliedto other First Nationscommunities also inneed of developinglocal palliative careservices.

*http://eolfn.lakeheadu.ca/project-communications/brochures

http://eolfn.lakeheadu.ca/project-communications/brochures

PRIMARy CAReIn the first half of the 20th century, most deathsoccurred at home and were managed by familyphysicians. Since that time we have experiencedintense specialization within medicine. Peoplewho would once have died at home are nowbeing admitted to the hospital for intensiveinterventions and this is often where they die. Asa result, primary care physicians have lost skillsrelated to caring for their patients until the endof their lives.

However, this trend is beginning to change.Primary care providers now take moreresponsibility for chronic disease management.As part of the broader shift to a shared caremodel, primary care practitioners are expectedto be more actively involved in their patients’care throughout their illness, including at the endof life. The challenges the primary care sectorfaces in providing an integrated palliativeapproach to care include: a lack of knowledge orskills in applying an integrated palliativeapproach in primary care; compensation modelsthat do not remunerate primary care practicesfor the time required to provide end-of-life care;and the varied models of primary care. Forexample, it can be extremely difficult for an

individual practitioner to provide an integratedpalliative approach, while it may be easier forprimary care practices/teams, particularly thosewith nurses and nurse practitioners, to take on asignificant amount of both advance care planningand end-of-life care. The following actions canhelp integrate palliative services into primarycare:

1. Identify the members of the primary careteam who will champion an integratedpalliative approach and seamless transitions.There is a growing trend among primary carepractices for members of the team to“specialize” in specific areas of care, keep up-to-date on current research and trends, andprovide training and be the “consultant” forothers on the team. Within the team, there willlikely be some members who have strengths inpalliative care and who will choose to take onmore responsibility in this role. However, allmembers of the team should be familiar withpalliative care practice policies and be able toprovide care in key areas of an integratedpalliative approach. Primary care practices maychoose to identify a nurse to work withpatients who are frail or have a chronic illness,whose role will be to coordinate with homecare and other services and ensure seamlesstransitions between care settings.

2. ensure appropriate, ongoing education. Members of the primary care team will neededucation in an integrated palliative approachto care. Teams can connect with experthospice palliative care services to access thistraining. Education should include: advancecare planning, plans of care, communicatingwith individuals and families, pain andsymptom management, and other servicesavailable in the community. Primary carepractitioners should also be educated in such away that they are able to provide culturally-safe and appropriate palliative care for diverseAboriginal and ethnic communities.

Primary care practitionersshould also be educated insuch a way that they areable to provide culturally-safe and appropriatepalliative care for diverseAboriginal and ethniccommunities.


49

3. Identify individuals who could benefit froman integrated palliative approach. Asignificant number of patients who receiveprimary care will likely have health conditions,such as frailty or a chronic illness, that putthem at risk of being hospitalized or dyingsuddenly. With an effective assessment tool,primary care practices can identify theseindividuals and develop a mechanism tomanage their care and monitor their well-being. People at risk would be a priority foradvance care planning, physicians or othermembers of the team would: talk with themabout their health, their prognosis, treatmentoptions and their potential benefits and risks.Each of these individuals would then have anadvance care plan and goals of care thatreflect his or her values. Primary care providerswould routinely ask themselves the “surprise”question: would it be a surprise if this personwere to die? When the answer is “no”, theywould provide more intense integratedpalliative services, which would lead to end-of-

life care based on the person’s needs. Advancecare plans should be initiated and revisitedwith all patients as the illness progresses.

4. Provide practical tools, algorithms andguidelines. Primary care practitioners willbenefit from having easy-to-use tools andalgorithms to help them deliver integratedpalliative care, such as tools to assist inadvance care planning, communication cues,descriptions of both the benefits and risks ofdifferent treatments for chronic conditions, andcriteria and reminder systems that triggerteams to revisit care plans and goals of care.

5. Build strong links with other settings andservices, including specialized palliative careteams and hospices. Strong relationships withother settings and services will help primarycare practices ensure their patients andfamilies can benefit from the services availablein their community. They also help ensureseamless transitions between care settings.

6. Identify and track indicators of an integrated

IV. The Framework in Action on the Front Lines


palliative approach in primary care. Primarycare practices should routinely collect data onkey indicators of an integrated palliativeapproach to care including:

• the number of patients who have up-to-dateadvanced care plans;

• the number of patients who are frail or have achronic life-limiting condition who are being wellmanaged at home or in a long-term care facility;

• the extent to which care pathways andalgorithms are followed routinely;

• patient satisfaction;

• the avoidance of emergency room visits andhospitalizations;

• and the number of deaths that occur in thepatient’s preferred setting of care.

CHRONIC dISeASeMANAGeMeNT TeAMS/ACuTe CAReBetween 60% and 70% of Canadians still die inthe hospital, and only a small proportion of thosedie in dedicated palliative care units. Thechallenge facing the acute care sector is ensuringthat patients die in their preferred setting and

ensuring that those who do die in the hospitalhave access to an integrated palliative approach.

A sizable proportion of Canadians with chronicillnesses such as cancer, progressive neurologicaldiseases, or organ failure will be hospitalized orwill visit hospital-based chronic disease clinics.This gives chronic disease management teams inthe acute care sector a unique opportunity toensure better access to an integrated palliativeapproach earlier in the course of an illness,thereby enhancing patients’ quality of life andengaging them in their own care.

Actions to help acute care settings implement anintegrated palliative approach include:

1. develop policies/expectations to guide anintegrated palliative approach in theprogram, such as:

• All patients will have an advance care plan;

• Providers will engage patients in discussionsabout their prognosis, treatment options and thebenefits and risks associated with these options;

• Non-aggressive measures are always presented asan option.

2. develop the skills and protocols to provide

Many practitioners working in acute care settings are frustratedby the current challenges in practice. They recognize that thereare limited healthcare resources and that these resourcesshould be used where they will do the most good. At the sametime, they work in a system that is singularly focused on curingpatients and with patients and families who may feel entitled touse all the healthcare system has to offer. Acute care staff needprotocols and skills to help them talk to patients and familymembers early and throughout the course of an illness so thatwhen intensive measures are no longer appropriate or effective,the transition to palliative care will be easier.


an integrated palliative approach to care.Chronic disease management/acute careprograms that see a large number of patientswho are frail or who have conditions can workwith expert hospice palliative care program intheir community to develop the skills andprotocols to incorporate an integratedpalliative approach in their everyday practice.These acute care programs may consideridentifying individuals on their teams whodemonstrate particular skills in an integratedpalliative approach to champion thesepractices and mentor/educate others.

3. educate chronic disease management/acutecare staff about services available in othersettings. Chronic disease management/acutecare programs may be reluctant to dischargepatients either to their homes or to a long-term care facility because staff may beunaware of the level of complex care that canbe provided safely in settings in thecommunity. Chronic diseasemanagement/acute care staff should receiveeducation about the services available and,where possible, visit these other settings inorder to identify more effective ways tocollaborate to improve patient care – boththroughout a long-term illness and at end oflife. This education should help chronicdisease management/acute care staff knowwhen someone can be discharged from thehospital to their preferred setting for care.

4. Identify and track indicators of an integratedpalliative approach in chronic diseasemanagement/acute care. To assess progressimplementing an integrated palliativeapproach and its impact, chronic diseasemanagement/acute care programs shouldroutinely collect data on key indicators of anintegrated palliative approach to careincluding:

• patient satisfaction;

• pain and symptom management;

• the number of patients who have up-to-dateadvance care plans;

• the proportion of patients who die in intensivecare;

• the proportion of patients who are discharged to,and die in, their preferred setting (e.g., home,long-term facility or hospice) rather than in thehospital;

• the satisfaction of family members of people whodo die in hospital;

• cost of care;

• care costs avoided.

52 V. Next Steps

V. Next StepsThe Way Forward is part of a pan-Canadian effort to ensure that all people in Canada who areaging or living with a chronic illness have access to the benefits of an integrated palliativeapproach to care when they need them.

It proposes a fairly radical change in the waypeople access these services. It acknowledgesthat, for most Canadians, their time of deathwill be unpredictable. Instead of having to bediagnosed as “close to death” to receivepalliative care services, people should be ableto access these services much earlier in theirdisease trajectory. The trigger for these servicesshould be a diagnosis with a progressive orchronic illness. For people who are aging andbecoming frail, it could be the “surprise”question. In fact, some aspects of an integratedpalliative approach to care, such as advancecare planning, should be available andpromoted to people – particularly seniors –before they even become ill.

With this framework, healthcare providers willbe encouraged to talk much more openly withpatients and their families about theirprognosis, treatment options, and the benefitsand risks associated with these options. Peoplewho are aging or have a chronic illness will have

care plans that they develop with theirproviders and can update as their needschange. They will also have access to otheraspects of palliative care, including pain andsymptom management and psychosocialsupport, as they need them. These services willbe provided by their own healthcare providers,with the support of palliative care experts, andintegrated with their other care.

Although funding for the three-year WayForward initiative has ended, the work isongoing. It is being championed by individualsand organizations across Canada. Asgovernments, health professions and caresettings implement and gain experience withan integrated palliative approach to care, theywill share best practices and lessons learned.Action steps in the National Framework willcontinue to be refined by those implementing apalliative approach: the lessons they learn willinform others.

53Appendix

AppendixQuality End-of-life Care Coalition of Canada

Member Organizations

ALS Society of Canada

Alzheimer Society of Canada

Canadian AIDS Society

Canadian Association of Occupational Therapists

Canadian Association for Spiritual Care

Canadian Association of Social Workers

Canadian Association of the Deaf

Canadian Breast Cancer Network

Canadian Cancer Action Network

Canadian Cancer Society

College of Family Physicians of Canada

Canadian Home Care Association

Canadian Hospice Palliative Care Association

Canadian Lung Association

Canadian Medical Association

Canadian Nurses Association

Canadian Partnership Against Cancer

Associate Members

Canadian Arthritis Patients Alliance

Canadian Caregiver Coalition

Canadian Network for Palliative Care for Children

Canadian Virtual Hospice

Canadian Pharmacists Association

Canadian Society of Palliative Care Physicians

Canadian Society of Respiratory Therapists

Canadian Working Group on HIV and Rehabilitation

Catholic Health Alliance of Canada

HealthCareCAN

Heart and Stroke Foundation of Canada

Huntington Society of Canada

Inuit Tapiriit Kanatami

The Kidney Foundation of Canada

Mental Health Commission of Canada

National Initiative for the Care of the Elderly (NICE)

Ovarian Cancer Canada

Pallium Foundation of Canada

Saint Elizabeth Health Care

Technology Evaluation in the Elderly Network

Women’s Inter-Church Council of Canada

54 References

ReferencesBakitas M, Lyons KD, Hegel MT, et al. Effects of a palliative care intervention on clinical outcomes in patients withadvanced cancer: The Project ENABLE II randomized control trial. 2009; JAMA 302:741-749

Bruera E. & Hui D. Integrating Supportive and Palliative Care in the Trajectory of Cancer: Establishing Goals and Modelsof Care. Journal of Clinical Oncology. 2010 Sep 1;28(25):4013-7

Canadian Hospice Palliative Care Association. Innovative Models of Care, The Way Forward initiative: an IntegratedPalliative Approach to Care. 2013

Canadian Hospice Palliative Care Association Fact Sheet. Hospice Palliative Care in Canada. March 2014

Canadian Institute for Health Information. Caring for Seniors with Alzheimer’s Disease and Other Forms of Dementia.2010

Canadian Institute for Health Information. Health Care in Canada 2011: A Focus on Seniors and Aging. 2011.

Canadian Institute for Health Information. Health Care Use at the End of Life in Atlantic Canada. 2011.

Canadian Institute for Health Information. Health Care Use at the End of Life in Western Canada. 2007.

Castleden H, Crooks VA, Hanlon N, Schuurman N. Providers’ perceptions of Aboriginal palliative care in BritishColumbia’s rural interior. Health Soc Care Community. 2010 Sep;18(5):483-91.

Cochrane E, Colville E & Conway R. Addressing the Needs of Patients with Advanced Non-Malignant Disease in aHospice Day Care Setting. International Journal of Palliative Nursing. 2008 Aug;14(8):382-7

Con A. Cross-cultural considerations in promoting advance care planning in Canada. Report prepared for Health Canada.February 2008. See: http://www.bccancer.bc.ca/NR/rdonlyres/E17D408A-C0DB-40FA-9682-9DD914BB771F/28582/COLOUR030408_Con.pdf

Fowler R, Hammer M. (2013). End-of-Life Care in Canada. Clin Invest Med 36 (3):E127-E132

Gade G, Venohr I, Conner D, et al. Impact of an inpatient palliative care team: A randomized control trial. J Palliat Med2008;11:180-190

Gillick MR. Rethinking the Central Dogma of Palliative Care. Journal of Palliative Medicine. 2005 Oct;8(5):909-13

Glare PA & Virik K. Can We Do Better in End-of-Life Care? The Mixed Management Model and Palliative Care. MedicalJournal of Australia. 2001 Nov 19; 175(10):530-3

iPANEL. Initiative for a Palliative Approach in Nursing: Evidence and Leadership. Accessed from http://www.ipanel.ca 20January 2012

Kelly L. Palliative care of First Nations people: A qualitative study of bereaved family members. Canadian FamilyPhysician, April 2009;55(4):394-395.

Klinger CA, Howell D, Marshall D, et al. Resource utilization and cost analyses of home-based palliative care serviceprovision: The Niagara West End-of-Life Shared-Care Project. Palliative Medicine, February 2013

Lussier D, Bruneau M-A, & Villalpando JM. Management of End-Stage Dementia. Primary Care; Clinics in Office Practice.2011 Jun; 38(2):247-64

Lynn, J. (2005). Living long in fragile health: The new demographics shape end of life care. Improving end of life care:Why has it been so difficult. Hastings Centre Report-Special Report 35 (6): S 14-18

Lynn, J. Sick to Death and Not Going to Take It Anymore! Reforming Health Care for the Last Years of Life. University ofCalifornia Press. Berkeley and Los Angeles, California, 2004

Meyers FJ, Carducci M, Loscalzo MJ, et al. Effects of a problem-solving intervention (COPE) on quality of life for patientswith advanced cancer on clinical trials and their caregivers: Simultaneous care educational intervention (SCEI) – Linkingpalliation and clinical trials. J Palliat Med 2011;14:465-473

Mitchell S, Teno J, Miller S, Mor V. A national study of the location of death for older persons with dementia. JAGS 2005;53:299-305

55References

Personal communication: Mike Harlos, Medical Director, Palliative Care Programs and Pediatric Palliative Care Service,Winnipeg Regional Health Authority. Dec 2012

Personal communication, Deborah Randall-Wood, Administrator, Lakeland Long Term Care. Dec 2012

Personal communication: Carolyn Taylor, Director, Clinical Programs, End of Life Care, Fraser Health, BC. Dec 2012

Quill TE & Abernethy AP. Generalist plus Specialist Palliative Care – Creating a More Sustainable Model. N Engl J Med.March 7, 2013

Saint Elizabeth Foundation. First Nations Inuit & Métis Program Overview.http://www.saintelizabeth.com/getmedia/97d3b9e3-7d6c-4397-b52b-a5b4d5c1bb1b/FoundationFNIMProgramBrochure.aspx

Smith TJ, Temin S, Erin R, et al. American Society of Clinical Oncology Provisional Clinical Opinion: The Integration ofPalliative Care into Standard Oncology Care. Feb 26, 2012. Accessed from www.asco.org March 2012.

Statistics Canada. Population Projections for Canada, Provinces and Territories: 2000 – 2026. 2001; Catalogue #91-520,p. 124.

Temel JS, Greer JA, Muzikansky A, et al. Early palliative care for patients with metastatic non-small-cell lung cancer. NEngl J Med 2010;363:733-742

World Health Organization. Cancer Control: Knowledge into Action. WHO Guide for Effective Programs. Palliative Care.2007.See: http://whqlibdoc.who.int/publications/2007/9241547345_eng.pdf

World Health Organization. WHO Definition of Palliative Care. Accessed fromhttp://www.who.int/cancer/palliative/definition/en/ March 2013.

56 Lexicon

Advance Care Planning - A process people can use to: thinkabout their values and what is important to them with regard totheir healthcare choices; explore medical information that isrelevant to their health; communicate their wishes and values totheir loved ones, substitute decision-maker and healthcare team;and record their healthcare choices and decisions in the eventthey can no longer speak for themselves. The process may involvediscussions with their healthcare providers and people who aresignificant in their lives. Advance care planning may result in thecreation of an advance directive or “living will”, which is aperson’s formal or informal instructions about their future careand choice of treatment options.

Aging - Aging is a natural process that happens to all livingthings. In people, the process of aging has an effect on the bodyand mind, and can affect health and quality of life. For example,as people age, their hearts become slower, their blood vesselsand arteries become stiffer, their bones shrink in size and aremore likely to break, their muscles lose strength, they maybecome less coordinated or have trouble balancing, and theirmemory becomes less efficient. The changes that occur withaging affect quality of life and increase the risk of dying. See“Frailty”.

Autonomy - The capacity for self-determination, and one of therights associated with liberty. Respect for autonomy meansacknowledging the person’s right to make choices and takeactions based on their own values and belief system and notinterfering with the person when he or she exercises that right.

Care - All interventions, treatments and assistance provided tothe person and family to treat disease and enhance health andwell-being.

Care plan - See “Plan of Care”

Caregiver - Anyone who provides care. Formal caregivers aremembers of an organization and accountable to defined normsand professional standards of practice. They may beprofessionals, support workers, or volunteers. They are sometimescalled “providers.” Family caregivers are not members of anorganization. They are family members and other significantpeople (as identified by the care recipient) who provide unpaidcare and assistance to individuals living with a debilitatingphysical, mental or cognitive condition. Family caregivers usuallyhave no formal training. While they are expected to follow certainethical norms, they are not accountable to professional standardsor practice.

Chronic disease - A chronic disease is one that may developslowly, last a long time, be incurable, and be progressive and/orlife-limiting. Examples of life-limiting chronic diseases includecardiovascular disease, chronic kidney disease, congestive heartfailure, diabetes, dementia, emphysema, multiple sclerosis,amyotrophic lateral sclerosis and some forms of cancer. The

disease and its treatment may cause symptoms such as fatigue,pain and sleep problems; they can also limit people’s activities,cause them psychological distress and have a negative effect ontheir quality of life. A chronic disease can’t be cured but itssymptoms can be managed.

expectations - Issues, hopes and fears identified by the personand/or family that require attention in the plan of care.

Family - Those closest to the patient in knowledge, care andaffection. The person defines his or her “family” and who will beinvolved in his/her care and/or present at the bedside. Mayinclude:

• the biological family

• the family of acquisition (related by marriage/contract)

• the family of choice and friends (including pets).

Frailty - Frailty is a nonspecific state of vulnerability caused bychanges to a number of physiological systems (see Aging), whichmay be related to a variety of physical, psychological, cognitiveand social factors. Together, these changes lead to reducedfunction and strength, and affect the person’s resilience andability to cope with any stress, such as an infection or disease orpersonal loss. Frailty is most commonly seen in the elderly butcan also occur in adults and children who are seriously orchronically ill. Someone who is frail is at high risk of physical andcognitive decline, disability and death. Frailty can cause pain anddiscomfort. It can also limit people’s activities, cause thempsychological distress and have a negative effect on their qualityof life.

Goals of care - Describes people’s goals for their care andshould include treatment of the disease and/or symptommanagement. In some cases, it includes limits on theinterventions that people want, such as “do not resuscitate”orders.

Home Care - Home care includes an array of services forpeople of all ages, provided in the home and community setting,that encompasses health promotion and teaching, curativeintervention, end-of-life care, rehabilitation, support andmaintenance, social adaptation and integration, and support forfamily caregivers.

Hospice palliative care - Care that aims to relieve sufferingand improve the quality of life

Illness - Absence of wellness due to disease, other conditions,or aging.

• An acute illness is one that is recent in onset and likely to betime-limited. If severe, it could be life threatening.

• A chronic illness is likely to persist for months to years. If itprogresses, it may become life threatening. (continued)

Lexicon of Terms Related to an Integrated Palliative Approach to CareLike all healthcare practices, hospice palliative care has its own language and terminology. This lexicon of terms isdesigned to help those interested in implementing an integrated palliative approach to care develop a commonlanguage and understanding.

57Lexicon

• An advanced illness is likely to be progressive and lifethreatening.

• A life-limiting illness is one that affects health and quality oflife, and can lead to death in the near future.

• A life-threatening illness is one that is likely to cause death inthe immediate future.

Integrated palliative approach to care/community-integrated palliative care - Care that focuses on meeting aperson’s and family’s full range of needs – physical, psychosocialand spiritual – at all stages of a chronic progressive illness. Itreinforces the person’s autonomy and right to be actively involvedin his or her own care – and strives to give individuals and familiesa greater sense of control. It sees palliative care as less of adiscrete service offered to dying persons when treatment is nolonger effective and more of an approach to care that canenhance their quality of life throughout the course of their illnessor the process of aging. It provides key aspects of palliative careat appropriate times during the person’s illness, focusingparticularly on open and sensitive communication about theperson’s prognosis and illness, advance care planning,psychosocial and spiritual support and pain/symptommanagement. As the person’s illness progresses, it includesregular opportunities to review the person’s goals and plan ofcare and referrals, if required, to expert palliative care services.

Interdisciplinary, multidisciplinary or interprofessionalteam - Caregivers with different training and skills who worktogether to develop a team and implement a person’s plan ofcare. Membership varies depending on the services required toaddress the person’s and family’s identified issues, expectations,needs and opportunities. An interdisciplinary team typicallyincludes one or more physicians, nurses, social workers,psychologists, spiritual advisors, pharmacists, personal supportworkers, and volunteers. Other disciplines may be part of theteam if resources permit.

Outcome - A measurable end result or consequence of a specificaction, usually related to the person’s health or overall well-being.

Palliative approach to care - See “Integrated palliativeapproach to care”

Pain and symptom management - Pain and other symptomsthat cause discomfort (e.g., shortness of breath, fatigue, changesin mood or functional ability, psychosocial or spiritual distress) canbe caused by underlying diseases. They can also be caused by thetreatments for those diseases, the side effects of treatments andthe process of aging. An integrated palliative approach to carefocuses on helping people manage pain and other symptoms as away to reduce discomfort and improve quality of life. Manydifferent techniques can be used to manage symptoms, includingmedication, exercise (physiotherapy), breathing, meditation, theuse of heat and cold, biofeedback processes, diet, repositioning,counselling and psychosocial and spiritual support.

Person - Someone living with a chronic progressive illness. Basedon the person’s preferences and wishes, the person directs andguides his or her own care plan as far as possible, and is acontributing member of the interdisciplinary team.

Plan of care - The written plan that describes the person’sassessed health needs and goals, and the care that will beprovided to meet those needs and goals.

Performance Indicators - A statistical compilation ofstandardized measures/metrics used to evaluate specificparameters of a health service, such as access and quality.

Provider - A formal caregiver who is a member of anorganization and accountable to norms of conduct andstandards of practice. They may be professionals, supportworkers or volunteers.

Quality care - The continuous striving by an interdisciplinaryteam/organization to meet the expectations and needs of thepeople and families it serves and the standards established bythe organization, health authority, profession and accreditationbodies.

Quality of life - Well-being as defined by each individual.Quality of life relates both to experiences that are meaningfuland valuable to the person, and his/her capacity to have suchexperiences.

Regional health programs or authorities - Health planningorganizations responsibilities for setting policies, allocatingresources to support care and approving organizational plans todeliver services.

Regional team - Regional teams are functional units designedto provide oversight and expert support for formal caregiversand multiple care teams within a given population/region/settingof care.

Setting of care - The location where care is provided. Settingsof care may include the person’s home, primary care settings(e.g., a doctor’s office, nursing station, community clinic), anacute, chronic, or long-term care facility, , a hospice or palliativecare unit , a jail or prison or in the case of homeless individuals,the street.

Spirituality - An existential construct inclusive of all the ways inwhich a person makes meaning and organizes his/her sense ofself around a personal set of beliefs, values and relationships.Spirituality is sometimes understood in terms of transcendence orinspiration. Involvement in a community of faith and practice mayor may not be a part of an individual's spirituality.

Substitute decision-maker - A person or agency chosen bythe person or appointed by the state to act on his or her behalf.Substitute decision-makers are normally held to substitutedjudgment or best interest standards.

Suffering - A state of distress associated with events thatthreaten the intactness of a person. It may be accompanied by aperceived lack of options for coping.

Value - Something that is morally desirable and/or afundamental belief on which spirituality and/or a practice isbased. A value can be intrinsic — perceived as worthy ortreasured in and for itself (e.g., liberty) — or a value can beinstrumental perceived as worthwhile for pragmatic purposes(e.g., money to obtain goods or services).

58 The Way Forward National Framework

Advisory CommitteeSharon Baxter, Executive Director, Canadian Hospice Palliative Care Association and ExecutiveMember and Secretariat of the Quality End-of-Life Care Coalition of Canada

Srini Chary, MD, Consulting Physician, Palliative Care Services, AHS, Calgary Zone & University ofCalgary; Acting Chair, Pallium Foundation of Canada

Nadine Henningsen, BSc., Executive Director, Canadian Home Care Association; President,Canadian Caregiver Coalition

Melody Isinger, DHCE, Ethicist, Canadian Medical Association

Julie Lachance, Senior Policy Analyst, Continuing Care Unit, Chronic and Continuing CareDivision, Health Care Programmes and Policy Directorate, Strategic Policy Branch, Health Canada

Deborah Dudgeon, Senior Scientific Leader, Person-centered Perspective, Canadian PartnershipAgainst Cancer

Mary Schulz, Director, Information, Support Services and Education, Alzheimer Society ofCanada

The Way Forward thanks these former Advisory Committee members for their support duringthe initiative's early stages:

Bobbi Greenberg, Mississauga Halton Community Care Access Centre

Denise Page, Canadian Cancer Society

Doreen Oneschuk, MD, The Canadian Society of Palliative Care Physicians, University of Alberta

Irene Nicoll, MBA, Canadian Partnership Against Cancer

Catherine Bancroft, Canadian Partnership Against Cancer

Shelagh Campbell-Palmer, Canadian Pharmacists Association

Project StaffLeanne Kitchen Clarke, The Way Forward Project Manager

Savanah Ashton, The Way Forward Project Coordinator

59The Way Forward National Framework

NOTES

60 The Way Forward National Framework

NOTES

The Way Forward Integration Initiative

Annex D - Saint Vincent Hospital60 Cambridge St. North, Ottawa, OntarioK1R 7A5

tel: 1-800-668-2785fax: 613-241-3986

www.hpcintegration.ca

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