THE WAY FORWARD NATIONAL FRAMEWORK Way Forward... · Effective ways to monitor and measure the...

THE WAY FORWARD NATIONAL FRAMEWORK:A ROADMAP FOR THE INTEGRATED PALL IAT IVE APPROACH TO CARE

ww

w.h

pci

nte

gra

tio

n.c

a

DRAFT – SPRING 2013

Imagine a new reality, where hospicepalliative care is available to Canadianswhen and where they need it; where livingwell until death is the goal of care.

Now, imagine a plan to get there. That'sThe Way Forward: an integrated palliativeapproach to care across settings.

1The Way Forward National Framework – Draft – Spring 2013

Preface.............................................................................................3Executive Summary .........................................................................4A Roadmap to Guide Change.........................................................6The Need for System-wide Change ................................................8

I. The Case for an Integrated Palliative Approach to Care ........9Dying is Part of Living......................................................................9The Challenge: Our Death Trajectory is Changing ........................9The Opportunity: The Integrated Palliative Approach Can Close the Care Gap ...............................................................11

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

III. The National Framework ....................................................211. Vision ............................................................................................212. Objectives.....................................................................................213. Principles ......................................................................................21

Laying the Foundation for Change ...............................................23Providing a Roadmap....................................................................24The Benefits of the National Framework.......................................24

IV. The Framework in Action ...................................................25Federal, Provincial and Territorial Governments: Develop Policies and Support the System ....................................26Regional Program Planners: Create a Seamless Network of Services ........................................29Care Settings and Providers: Find Practical Ways to Deliver the Integrated Palliative Approach................................................33

Long-Term Care..........................................................................33Home Care .................................................................................37Primary Care ...............................................................................40Acute Care..................................................................................42

V. Next Steps..........................................................................44

Appendix.......................................................................................45References.....................................................................................46

Table of Contents

2 The Way Forward National Framework – Draft – Spring 2013

Building on successful initiatives alreadyunderway across Canada, The WayForward will help identify and sharebest practices to help all care settingsimplement the palliative approach tocare and ensure that integrated,culturally sensitive palliative services areavailable to all those who can benefit,regardless of where they live in Canada.Effective ways to monitor and measurethe impact of the integrated palliativeapproach to care will also bedeveloped.


The Way Forward is a collaborativeinitiative of the Quality End-of-Life CareCoalition of Canada (QELCCC) and theCanadian Hospice Palliative CareAssociation (CHPCA), supported by one-time funding from the Government ofCanada. This three-year initiative (2012-2015) will engage all health care sectors,professionals and governments inintegrating a palliative approach to care inthe community in all care settings –including primary care, home/communitycare, long-term care, hospices, hospitalsand other places where people may die,such as shelters and prisons.

This document is the first step indeveloping a national framework: aroadmap for implementing an integratedpalliative approach to care in all caresettings across the country. This draftframework was developed by The WayForward advisory committee with theadvice of the members of the QELCCC –all of whom are experts in their field andrepresent national professionalorganizations, non- governmental groupsand patient organizations committed tothe integrated palliative approach to care(for a list of members, see Appendix).Over the next year, this draft frameworkwill be revised and refined based on theadvice and input of stakeholders acrossthe country to ensure it is practical andactionable. Additionally, the perspectivesof Canadians who are experiencing careissues associated with aging, frailty or aremanaging life-limiting illnesses will beincluded. The Way Forward will alsogather perspectives of First Nations, Inuitand Métis partners on knowledge, tools,and resources that can best address therealities and needs of Canada's FirstPeoples.

Preface

Over the next year, this draft framework will be revised andrefined based on the advice and input of stakeholders across

the country to ensure it is practical and actionable.

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.

However, because she is still receiving

treatment for her heart disease and she

does not have a diagnosis saying that she is

likely to die within the next six months, she

may not be referred to the hospice palliative

care services that could enhance both her

living and her dying.

Historically, hospice palliative care hasbeen offered only to people who are inthe last weeks or months of life, when allcurative treatments have been exhausted.At that point, the focus of care shifts fromcure to comfort. But illness trajectoriesare changing. Thanks to advances in

medical treatment, people who are agingor who are diagnosed with life-limiting orlife-threatening illnesses can now livemany years with their condition. Theirtime of death is often sudden and difficultto predict, which means that many arenever offered the benefits of hospicepalliative care services, such as socialsupport, advance care planning, andeffective pain and symptom managementthroughout their illness.

Only a small proportion of Canadians willneed the kind of complex, intensive ortertiary hospice palliative care providedby specialized palliative care teams inresidential settings, such as residentialhospices and acute care hospitals.However, everyone who is becoming frailor is faced with a life-limiting illness couldbenefit from certain key hospice palliativecare services. As our population ages, wemust ensure that all Canadians haveaccess to hospice palliative servicesintegrated with their other care that willhelp them manage symptoms, enhancetheir lives, give them a greater sense ofcontrol and enable them to makeinformed decisions about the care theywant. More equitable access to palliativecare services will enable more Canadiansto live well with their illness up to the endof life. It will also enable more people toreceive end-of-life care in the setting oftheir choice and reduce the demand onacute care resources.

Executive Summary


5

More equitable access to hospicepalliative care services will enablemore Canadians to live well with their illness up to the end of life.

The Way Forward National Framework – Draft – Spring 2013

To do this, we must change culture. Wemust move away from thinking thathospice palliative care is only about careat the end of life, once curativetreatments have stopped. We must alsomove away from thinking of hospice

palliative care as a service provided onlyby specialists, to one that can bedelivered by a range of providers,depending on people’s needs andpreferences.

A Roadmap to Guide Change

An integrated palliative approach to care focuses on meetinga person’s and family’s full range of needs – physical,psychosocial and spiritual – at all stages of a life-limitingillness, not just at the end of life. It reinforces the person’sautonomy and right to be actively involved in his or her owncare – and strives to give individuals and families a greatersense of control. It sees hospice 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 theirillness or the process of aging.


7

Our vision is that:All people in Canada who are aging and/or have chronic life-limitingconditions will have the opportunity to benefit from the integratedpalliative approach to care.

Our objectives are:1. To change the understanding and approaches to aging among key

stakeholders as it relates to chronic and life-limiting illness, dying andadvance care planning.

2. To enable stakeholders to move towards community-integration ofhospice palliative care across all health care settings.

The framework is a roadmap that will helpcreate the changes required to achieve ourcommon vision and objectives. It describeshow a different model of care – one thatrecognizes that dying is part of living andintegrates key hospice palliative services intopeople’s care – can ensure that:

• all care settings are able to provide culturallysensitive hospice palliative care;

• more people in Canada have access to highquality hospice palliative care services thatwill help them live and die well and have astronger voice in their care (i.e. moreautonomy);

• individuals and their families have betterhealth outcomes;

• people can move seamlessly from one caresetting to another if their needs change;

• there is less need for emergency visits andhospitalizations, and the system is able tomake more effective use of health resources.

We must move awayfrom thinking that

hospice palliative care isonly about care at the

end of life.



Ensuring that all people in Canada haveaccess to the integrated palliativeapproach to care requires changethroughout the system. The frameworkdescribes steps that could be taken at thefederal, provincial, and territorial levels,the regional health planning level and ineach sector or setting – including long-term care, home care, primary care, acute

care and specialized hospice palliativecare. Everyone has a role to play.However, organizations and settings donot need to wait for federal,provincial/territorial or regional action.The integrated palliative approach canstart anywhere – and should starteverywhere – in the system.

The Need for System-wide Change

The steps and strategies in the frameworkare based on the practical experience ofpeople and organizations that are alreadyleading the change. They focus primarily onputting in place:

• the education and supports required toengage providers in all settings;

• the relationships that help build shared-care models that support providers in allsettings;

• the communication systems and toolsthat allow different providers and settingsto share information quickly and easily;

• culturally sensitive and competent care;

• policy and practice changes;

• indicators to monitor progress inintegrating the palliative approach to careand evaluate its impact on the person’sand family’s health, the setting and itsproviders, and the health care system.

The integratedpalliative approach

can start anywhere -and should start

everywhere - in the system.


In the past, many Canadians would diesuddenly from a heart attack, stroke ororgan failure, or they would have adiagnosis, like cancer or AIDS, that had arecognizable terminal phase. Theirproviders could predict, with relativeaccuracy, the number of months they hadto live. In the last few weeks of life, theywould receive organized hospice palliativecare services that would help addresstheir physical, psychosocial and spiritualneeds, and enhance their living anddying. However, that predictable declineis no longer as common.

The Challenge: Our Death Trajectory is Changing

Dying is Part of Living

Most people with life-limiting and serious illness

“dwell in the indistinctzone of chronic illness that

has no specific caredelivery system”.

(Lynn, 2004)

Treatment advances have helped extendour lives, but they have not been able todefeat death. Canadians – including thoseof us who have a life-limiting illness or whoare becoming increasingly old and frail –are living longer, but we will all still die.

The health care system must acknowledgethat, as we age with these illnesses andfrailties, we are both living and dying. Itshould recognize that dying is part of livingand therefore help us manage and maintainour health as well as prepare for death.

Only 10% of people die suddenly. Theother 90% will require care and support atthe end of life. Only a small proportion ofCanadians – about 15% – will need thekind of complex (tertiary) palliative careservices provided by specialists inhospices and palliative care units. Theneeds of the rest can be met byintegrating a palliative approach into thecare they receive in the settings wherethey currently reside, such as at home, ina long-term care facility, in hospital – evenin a shelter or prison. (iPANEL, 2012)

I. The Case for an IntegratedPalliative Approach to Care

By 2025, only 20% of Canadians will die with an illness thathas a recognizable terminal phase. Two-thirds of Canadianswho die will have two or more chronic diseases and will havelived for months or years in a state of fragile health or“vulnerable frailty.” (CHPCA Fact Sheet, 2012)


Canadians are now more likely to survive aheart attack or a diagnosis of cancer andthey are also more likely to be living long-term with two or more chronic, life-limitingconditions. As they age, they becomemore frail and vulnerable to infections orfalls that could lead to death. Because oftheir complex health needs, they candeteriorate quickly and die suddenly –without ever being identified as“palliative.” Because “when” they will dieis less predictable, most people neverreceive the benefit of hospice palliativecare services. For example, three quarters

of British Columbians who die, do sowithout being identified as people whocould benefit from the services associatedwith palliative care. (iPANEL, 2012)The lack of access to hospice palliativecare services is a serious gap in carebecause all aging Canadians havephysical, emotional and spiritual needs –such as pain, loss of mobility and otherfunctions, physical and mental limitations,loss of friends and spouses (Cochrane etal, 2008) – that are not being adequatelyaddressed by current health services.

John, age 67, has cardiac 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

managing 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 hospice palliative care but, because her physician

estimated that Mary had one to two years to live, she didn’t fit the

criteria to receive hospice palliative care services.

Being diagnosed as “close to death” should no longer be thetrigger for Canadians to receive services that can enhance their

health and well-being, their living and their dying.

An integrated palliative approach to care focuses onimproving quality of life for individuals and their families. It is

provided in all health care settings. It involves physical,psychological, social, and spiritual care. The palliative

approach is not delayed until the end stages of an illness butis offered early to provide active comfort-focused care and

reduce suffering. It also promotes understanding of loss andbereavement. (Adapted from iPANEL, 2012)


In John’s case, this 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, the integrated palliative

approach 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.

All Canadians who are aging, frail or have life-limiting conditions that could hasten deathwould benefit from the integrated palliative approach to care. This includes key palliativeservices in addition to their regular care in community settings.

The Integrated Palliative Approach CanClose the Care Gap


The integrated palliative approach to carerecognizes that, in a health care systemfocused on cure and treatment, peoplemay not have the opportunity to talkabout dying or be truly informed abouttheir illness and prognosis. They may notbe asked about their care goals, or begiven an opportunity to talk about howthose goals may change over time. Forexample, early in the disease trajectory,the person’s main goal is usually toprolong life. He or she is willing to give upsome function and tolerate some pain fora chance to live longer. As time goes on,maintaining functions such as mobility orcognitive ability may become moreimportant. As the condition progresses,

comfort may become the main goal ofcare and the person may reject treatmentsthat will cause pain or requirehospitalization. (Gillick, 2005)

An integrated palliative approach to carealso recognizes that, when care is focusedon treating an illness, pain and othersymptoms (including those related totreatments) are not managed as well asthey could be, especially as the illnessprogresses and the person experiencesmore complications. The integratedpalliative approach focuses on helpingpeople discuss their goals of care earlyand often, manage symptoms and receivecare in the setting of their choice.


What is HospicePalliative Care?

II. About the Integrated Palliative Approach to Care

The World Health Organization defines palliative care as “an approach that improves thequality 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 other distressingsymptoms;

• 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 patients live asactively as possible until death;

• offers a support system to help the family copeduring the patient’s illness and throughout theirown bereavement;

• uses a team approach to address the needs ofpatients and their families, includingbereavement counseling, if indicated;

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

• is applicable early in the course of the illness, inconjunction with other therapies that areintended to prolong life, and includes thoseinvestigations needed to better understand andmanage distressing clinical complications.”(World Health Organization, 2013)

Hospice palliative careengages individuals and theirfamilies in planning for thecare they want at differentstages in their illness basedon their own goals and valuesand on a clear understandingof their prognosis andtreatment options (advancecare planning). When peoplehave access to palliative careservices, they report fewersymptoms, better quality oflife, and greater satisfactionwith their care. The healthcare system reports moreappropriate referrals, betteruse of hospice care, feweremergency room visits andhospitalizations, and less useof ineffective intensiveinterventions in the last daysof 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 life-

limiting 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 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.


What is the Integrated PalliativeApproach to Care?

The integrated palliative approach to caremakes key aspects of palliative care availableto individuals and families at appropriatetimes in their lives or during an illness in thecommunity setting they choose. Forexample, when an older person begins tobecome frail or when someone is diagnosedwith a life-limiting condition, the person andfamily would receive:

• 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 for boththe person and his or her familymembers/caregivers to help them if theyare struggling with any issues related tothe illness;

• Any pain or symptom management thatmay be 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 his orher goals;

• Ongoing psychosocial support;

• Pain and symptom management;

• Referrals to specialized 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 the Integrated PalliativeApproach be Provided?

The palliative needs of most Canadians can be met inprimary, community and acute care settings.

Since the integrated palliative approach isnot a specialized set of services, it can beintegrated into all settings in thecommunity where the person lives or isreceiving care. This includes the home,long-term care facilities, hospitals, sheltersand prisons. The palliative approach canbe provided in urban, rural and remotesettings, including Aboriginalcommunities.

The integrated palliative approach to carerecognizes that specialized palliative unitsand hospices are essential for end of lifecare, but are not appropriate for allpersons facing life-limiting chronicconditions. (Quill & Abernathy, 2013)

As the diagram below illustrates, only asmall proportion of Canadians will havethe kind of complex end-of-life needs thatrequire the highly specialized tertiaryhospice palliative care provided inhospices and dedicated palliative careunits. The palliative needs of mostCanadians can be met in primary,community and acute care settings.

By offering a palliative approach to care inall settings within the community, we canprovide better care for people and theirfamilies throughout the many transitionsassociated with chronic conditions such asdementia, lung, kidney and heart diseases,and cancer.


Who will Provide the 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 health care in shelters andprisons – will provide the integratedpalliative approach in their communities.As part of a shared-care model, thesepractitioners will be supported byspecialized hospice palliative care teamsbased in hospices, hospital palliative careunits or in the community. The role of thespecialized hospice palliative team mayvary in each jurisdiction depending on theextent to which the palliative approach tocare has been integrated into differentcare settings in the community. Forexample, in communities or regions thatare just beginning to implement theintegrated palliative approach to care,these teams may continue to provide asignificant amount of hospice palliativecare, even for people who do not havecomplex needs. As a community developsthe integrated palliative approach and

more primary care providers indifferent settings have theconfidence and skills tointegrate hospice palliativeservices into their patients’care, the specialist team willshift to more of a shared-carerole, which can include:

• educating providers;

• assessing and triagingindividuals to the setting thatbest meets their needs and

preferences;

• being available to consult and provideadvice to primary care providers;

• 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 thisdoes occur, the specialist team ensuresthe primary providers are kept informedabout the person’s care and progressand are able to resume responsibility fortheir care if their condition stabilizes andthey can be discharged back home orinto long-term care.


Some elements of palliative care, suchas aligning treatment with a patient’sgoals and basic symptom management,should be routine aspects of caredelivered by any practitioner. Otherskills are more complex and take yearsof training to learn and apply, such asnegotiating a difficult family meeting,addressing veiled existential stress andmanaging refractory symptoms. (Quill &Abernethy, 2013)

The integrated palliative approach to careis a shared-care model. Hospice palliativecare specialists support and share thecare. They take the lead only when peoplehave complex, intensive or tertiary end-of-life needs; such as heart failure, respiratoryillness, dementia or severe symptomissues, and when normal medicalmanagement has not been able to relievesymptoms.

The diagram on the following page,developed by Hospice Palliative CareOntario illustrates how a palliativeapproach to care can be integrated intothe management of chronic progressive

diseases. It shows how different aspectsof palliative care can be incorporated atdifferent stages of the illness.

The role of the specializedhospice palliative team

may vary in eachjurisdiction.


Why Adopt the Integrated PalliativeApproach to Care?

The integrated palliative approach to careimproves health and quality of life forpeople who are aging, frail or have a life-limiting illness, gives people a greatersense of control over their lives and care,and makes more effective use of healthresources. It is a cost-effective way to fill agap in care and meet the increasinglycomplex health and psychosocial needs ofolder Canadians and their families withintheir communities. It also makes effectiveuse of the small number of palliative carespecialists in Canada.

Better Health OutcomesIn a series of studies with people with arange of chronic life-limiting illnesses,including cancer, ALS, congestive heartfailure, chronic obstructive pulmonary

disease, and multiple sclerosis, findingswere greatly in favor of the palliativeapproach. The integrated palliativeapproach leads to better outcomes forindividuals and their family caregivers,including fewer symptoms, better qualityof life, and greater patient satisfaction.(Bakitas et al., 2009; Temel et al., 2010;Meyers et al., 2011; Smith et al., 2012)

The integrated palliative approach to careleads to positive effects on emotionalwellness, less suffering, and greaterlongevity. In some cases, people whoreceive the integrated palliative approachto care live longer while using fewerservices. (Bakitas et al., 2009)

In one study with people withALS, participants who receivedan integrated palliative approachto care had a 30% decrease inmortality compared to thosewho received usual care. Theyalso reported better functionand mobility, less deformity andgreater comfort and quality oflife. (Mayadev et al, 2008)

People with cancer who receivedintegrated palliative care wereless likely to die in the year afterenrolling in the study. They alsoreported better quality of lifeand mood. (Bakitas et al., 2009)


More autonomy and control for patientsThe integrated palliative approach worksbecause it gives patients the information andsupport they need to make informeddecisions about their care. Although we havetreatments for many progressive life-limitingillnesses, these illnesses cannot be cured. Theintegrated palliative approach to carerecognizes that, faced with progressivediseases, people’s goals of care will changeover time, giving them the opportunity todiscuss their values and wishes earlier andmore frequently.

Seamless transitionsWhen the palliative approach is integratedinto all settings of care within the community,people will receive consistent seamless careeven when they have to move from onesetting of care to another. Their advance careplan and their goals of care will travel withthem, and their wishes will be respected in allsettings of care.

Better use of resourcesThe integrated palliative approach to care isurgently needed for both people with chroniclife-limiting conditions and the health caresystem. Over the next 20 years, our healthcare system faces a tidal wave of agingCanadians, many of whom will have chroniclife-limiting conditions. In 2007, 37% ofCanadians reported they had been diagnosedwith at least one chronic condition, while 41%of seniors had two or more chronicconditions. These illnesses accounted for 70%of all deaths. (Statistics Canada, 2001)

Although Canadians can die at any age, theaverage age of death in Canada is 74. Withthe aging of our population, the number ofCanadians dying each year will increase 40%by 2026 to 330,000 and 65% by 2036 to morethan 425,000. (Statistics Canada, 2001)

Although most Canadians say they wouldprefer to die at home surrounded by theirloved ones, between 60 and 70% still die inhospital – many of them in intensive care. Theintegrated palliative approach to care offers aviable and effective alternative. It benefits thehealth care system because it results in:

• less burden on caregivers;

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

• more efficient use of the small number ofhospice palliative care specialists in Canada;

• fewer emergency room visits and hospitalstays;

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


Expensive invasive procedures in thelast year of life account for about 18%of Canadians’ lifetime health care costs– and these procedures often do notprolong life or benefit the patient.Sometimes they cause more sufferingand hasten death. If we do not findbetter ways to provide care, thefinancial, social and human implicationswill be overwhelming.

In a Kaiser Permanente study in the UnitedStates, individuals who received hospicepalliative care services integrated withother care had fewer intensive care unitstays and lower health costs: a net costsaving of $4,855 per patient. (Gade et al,2008) We have seen similar economicimpacts in Canada. A study by the NiagaraWest End-of-Life Shared-Care Project

found that providing enhanced palliativecare team-based homemaking and nursingservices for 95 people in rural Ontariodying at home with illnesses such ascancer, heart disease and chronicobstructive pulmonary disease cost$117.95 a day – significantly less thanhospital-based care. (Klinger et al., 2013)


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 FrameworkThis framework describes steps that could be taken at the federal, provincial, and territoriallevels, the regional health planning level and at the settings of care level.

However, organizations and settings do not need to wait for federal, provincial/territorialor regional action. The integrated palliative approach can start anywhere – and shouldstart everywhere – in the system.

1. VISIONAll people in Canada who are agingand/or have chronic life-limiting conditionswill have the opportunity to benefit fromthe integrated palliative approach to carewithin their community.

2. OBJECTIVES1. To change the understanding andapproaches to aging among keystakeholders as it relates to chronic andlife-limiting illness, dying and advancecare planning.

2. To enable stakeholders to movetowards community-integration ofhospice palliative care across all healthcare settings.

3. PRINCIPlES

Dying is Part of living. Dying is anintegral part of living. The health caresystem acknowledges that people withchronic life-limiting illnesses are both livingand dying, and provide opportunities forthem to live well and, at the same time,prepare for death by talking about thekind of life, care, and death they want.

Autonomy and Respect. People who areaging or who are diagnosed with chronic,life-limiting illnesses have the right to beactively involved in their own care and tohave a sense of control over their livingand dying. They are treated with respectand given all the information about theirhealth, the expected course of frailty ordisease, their treatment options includingtheir likely outcomes and side effects, andthe services available to them. They havethe opportunity to talk about their healthand the possibility of dying, to identifytheir preferred setting of care and todevelop care plans that align with theirvalues. They also have the opportunity tochange their plans as their care goalschange.

Person and Family1 Driven Care. Whensomeone is becoming frail or is diagnosedwith a life-limiting illness, it is estimatedthat it affects at least five other people.(CHPCA, 2012) In most cases, familymembers assume an increasing proportionof the person’s care over time and theneed for care can continue for years. Theintegrated palliative approach to care is

Providing anintegrated palliativeapproach to care in allsettings of care willrequire a significantchange in practice – as well as a broadersocial change inCanadian’s attitudestowards dying.22 The Way Forward National Framework – Draft – Spring 2013

therefore both person and family driven.Services are sensitive to the individual’sand family’s personal, cultural andreligious values, beliefs and practices.They also take into account the burdenthat different treatment options place onfamilies and their capacity to assume thatburden.

Integrated, Holistic Care. High qualitycare for people who are frail or who havea chronic life-limiting illness includesregular holistic assessment of theirphysical, psychosocial and emotionalneeds – as well as the integrated palliativeservices to meet those needs. Theintegrated palliative approach to care isbest provided in the community by aninter-professional team, which includes

the person, family caregivers, and healthcare providers, supported by specializedpalliative care teams.

Equitable Access to Health Services. Allpeople in Canada who are aging or whohave a chronic life-limiting illness haveequitable access to the integratedpalliative approach to care, regardless ofwhere they live, their care setting, theirrace or culture, and their economic status.

Effective Use of Health Resources. Thehealth care system is accountable for theeffective use of its resources. Theintegrated palliative approach to carehelps identify and respond to people’sphysical, psychosocial and emotionalneeds early, and avoid costly, ineffectivemeasures at the end of life.


Laying the Foundation for ChangeIntegrating the palliative approach to careinto the community – offering key hospicepalliative care services as people becomeolder or frailer or when they are diagnosedwith a chronic life-limiting disease – calls fora significant change in our current cultureand practice. It asks practitioners andorganizations to think differently about howhospice palliative services can benefit peoplewho are aging or have chronic diseases, andhelp them develop new skills and carepathways.

Practitioners in primary care practices,chronic disease programs, home care, long-term care, hospitals and other settings –many of whom already feel overwhelmedwith care demands – will have to becomeknowledgeable about the integratedpalliative approach to care. They will need to:

• learn to recognize when a singular focuson treating or curing patients is no longerthe best thing for their health and well-being;

• develop the skills to communicate withpatients and families about death anddying, engage them in their care, givethem more control over their decisions,and work with them to develop care plans;

• know when to provide an integratedpalliative approach to care, when toconsult specialized palliative care teamsand when to refer patients and families tomore specialized services.

To provide the integrated palliative approachto care, they may also need to examine theirown attitudes to living and dying, and cometo terms with their own mortality.

Canada is not the onlyjurisdiction exploring thepotential of this approach tocare. In its report,Approaching Death, the USInstitute of Medicineproposed a mixedmanagement model thatallows for active, life-prolonging treatment andhospice palliative care tooccur in parallel in order toprovide comprehensive carethroughout the illness anddying experience rather thanonly at the end. (Glare&Virik, 2001) The WorldHealth Organization has alsocalled for palliative care tobe integrated across diseasetrajectories and settings.(World Health Organization,2007)

Practitioners may need to examine their own

attitudes to living and dying.


Providing a RoadmapTo help the health care system implementan integrated palliative approach, theCanadian Hospice Palliative CareAssociation (CHPCA) and the Quality End-of-Life Care Coalition of Canada(QELCCC) are developing this NationalFramework: A Roadmap for the IntegratedPalliative Approach to Care. Thiscollaborative iterative framework,developed with primary care, chronicdisease, home care, long-term care,hospital teams and practitioners – andwith advice from Canadians who arecoping with frailty or life-limiting illnesses–reflects the experience of programs hereand abroad that are already successfully

implementing an integrated palliativeapproach.

This roadmap will help jurisdictions,organizations and practitioners that aspireto provide the integrated palliativeapproach to care in all communitysettings. It consists of a common vision,shared goals and principles as well as a“checklist” of steps and activities. Ithighlights key tools, structures andsupports including: policies andexpectations, education and training,remuneration systems, communicationand other tools, and monitoring andevaluation.

THE BENEFITS OF THE NATIONAl FRAMEwORk

• Increases awareness of the integrated palliative approachto care.

• Reinforces that the way we live and the way we diematters. Canadians can have much more say and a greatersense of control over their living and dying.

• Encourages consistency across the country, so allCanadians have equitable access to an integratedpalliative approach and can benefit from the services.

• Helps ensure seamless transitions of care across allsettings.

• Builds on existing strengths. Across Canada, manyprograms are already using an integrated palliativeapproach. Driven by a desire to fill gaps in care, theseprograms have improved training for health professionals,developed models of shared care, increased the number ofpeople who are able to die at home, and reduced hospitalstays. The national framework will build on and share thestrategies that these programs used to change care.

We know these actionsare doable because

they are alreadyhappening in

organizations acrossthe country.


IV. The Framework in ActionShifting the health care system from its current singular focus on treating illness to anintegrated palliative approach to care in the community will require action at all levels andwithin all sectors and settings.

If people who are frail or have a life-limiting illness and their families are going to receive thecare they need in the setting of their choice, then all parts of the health care system mustcreate the conditions that support the shift to the integrated palliative approach to care inthe community.

At all levels and in all settings, creating theseconditions involves certain key activities,including:

• Establishing a shared vision and goals;

• Developing policies that help shapeorganizational culture and activelypromote the integrated palliativeapproach to care;

• Setting clear expectations for all providersand staff on their role and how theirpractice should change;

• Providing ongoing education so staffdevelop the competencies to integrate thepalliative approach with the other carethey provide and to provide culturallysensitive care;

• Developing tools and guidelines that helpproviders integrate the palliative approachto care, including assessment tools thathelp providers in each setting identify theclients, residents or patients who wouldbenefit from the integrated palliativeapproach to care;

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

• Being accountable for the quality andimpact of this shift in practice bytracking and monitoring that individualsand families have equitable access tothe integrated palliative approach tocare and assessing the impact of thatcare on their health and well-being, ontheir satisfaction with care, on providersatisfaction, on the organization and onthe use of other health services.

The following pages describe how theseactivities would play out, in a practical way,at all levels in the health care system andin different care settings.

The health care systemmust shift its current

singular focus on treatingillness only.


Federal, Provincial andTerritorial Governments: Develop Policies and Supportthe System

Leadership for the change in culture can come from thegovernments that plan, fund and manage health caresystems. The federal, provincial, and territorial governments2

are all critical partners in the framework for action.

Many jurisdictions that have made progress in developingthe integrated palliative approach to care have had strongcentral/government support for the change. The followingare the keys actions at this central level:

1. Adapt/adopt the framework 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 theintegrated 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;

• More deaths will occur at home or in other settings wherepeople receive care, such as long-term care homes, andfewer will occur in intensive care units.

3. Create legislation/regulations, where required, toensure all settings are accountable for implementing thepolicy.

4. Establish guidelines and standards of care that areconsistent with the national norms of practice forhospice palliative care and reflect specific populations’

2Provincial and territorial governments are responsible for health services for their citizens. In addition, the federalgovernment is also responsible for providing some health services directly: it manages the fifth largest health care system inthe country, providing health care for First Nations communities, the Armed Forces, the RCMP and veterans.

The End-of-Life CareStrategy for England(2008) guides careand mandates the useof programs such asthe Gold StandardsFramework and theLiverpool CarePathway for theDying Patient.

Australia hasdeveloped a nationalpalliative carestrategy (2010) aswell as nationalguidelines for apalliative approachfor aged care in thecommunity setting(2011), while theNorthern TerritoryGovernment inAustralia has adaptedthe national strategyfor its region.


needs for a palliative approach.Governments could make these standards arequirement for accreditation.

5. Develop remuneration systems andincentives 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 tospecialized palliative care services even whenthey do not require specialized care, is thatcurrent remuneration systems do notcompensate them for the time required toprovide the 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 new resources. Some incentivescan take the form of supports that reducethe burden on primary care providers, suchas, providing an on-call service and afterhours or weekend service.

6. 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 orhospice), it is essential that their advancecare 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). cont’don next page

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 for action.


7. Support education of health care providersin all settings. Education resourcesdeveloped federally, provincially orterritorially can help reduce costlyduplication at other levels in the health caresystem and promote more consistency inhow the integrated palliative approach isunderstood and delivered. Governmentsshould collaborate with the healthprofessions to ensure the integratedpalliative approach and hospice palliativecare skills are incorporated into professionalpre-service and in-service education. Thereare already strong education programsdeveloped in Canada, such as the LearningEssential Approaches to Palliative and End ofLife Care (LEAP) program developed by thePallium program. Governments could alsoprovide funds to support in-service hospicepalliative education for providers in all caresettings.

8. Establish the indicators and monitoringsystem to assess progress in providing anintegrated palliative approach to care andevaluate its impact. For example, SilverChain in Australia was able to compare theoutcomes of those who received its serviceswith those who did not, and to demonstratethat 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.

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)

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 specialized hospicepalliative care teams and programs that will support theintegrated palliative approach to care. The following actionswill help regional programs promote the integratedpalliative approach:

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 a part of the larger discussion about strategicdirection in the health care system as well as how tosupport the integrated palliative approach in all othersettings. Specialized palliative care programs can helpcare teams 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 direct care.

3. Establish a single central number to call to access theintegrated palliative care program and/or team, staffed 24/7 that provides virtual support for health 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 [the integratedpalliative approach] athome and in long-termcare facilities.” (Personalcommunication: MikeHarlos, Canadian VirtualHospice, 2013)



practitioners. This service will provideconsultation and advice for providers in allsettings providing the integrated palliativeapproach. In most of the innovative models ofintegrated palliative care in place now, thisservice is provided by the hospice, which isalso responsible for developing andmaintaining the specialized hospice palliativecare teams.

4. Build relationships with all sectors andsettings where people with chronic, life-limiting conditions receive care: primary care,home care, long-term care, acute care, andhospices. For example, in North Haven, NewZealand, the central specialized hospiceprogram provides consultation, support andeducation for primary care providers in thecommunity and in hospital. These relationshipswill help ensure seamless transitions betweensettings.

5. Identify core competencies and educationprograms to enhance the capacity ofpractitioners in all settings – primary care,home care, long-term care, acute care andothers – to integrate key palliative serviceswith other care. The region can setexpectations, such as, all physicians, nursesand pharmacists should have certain corecompetencies in the palliative approach tocare. Some jurisdictions have made training in

the integrated palliative approach available toall physicians in family practice, oncology andinternal medicine. In BC, for example, familyphysicians and their office assistants areexpected to complete a module on how tomanage patients and the resources availableand, in some areas of the province, all acutecare nurses and home care staff are expectedto have basic or enhanced education inproviding hospice palliative services. (Personalcommunication: Carolyn Tayler, Fraser HealthAuthority, 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 providethe integrated palliative approach, health careproviders need the capacity to adapt servicesto meet the needs of both culturally diverseand geographically remote communities. Forexample, practitioners should know how to

The central hub and spoke approach used in North Haven, NewZealand, encourages standardization of care, equal accessacross the district and economical use of resources. A specialistnurse educator and advisor works to increase the capacity ofprimary care providers and break down silos between services.The model aims to have most end-of-life care provided byprimary care providers, with specialist palliative care servicestaking on complex cases. (CHPCA, 2013)

Fraser Health in BC recentlyintroduced a Medical Ordersfor Scope of Treatment(MOST) that provides toolsand supports for physicians togive patients prognosticinformation and todocument/describe theiradvance care planningdiscussions with patients.(CHPCA, 2013)

adapt guidelines, algorithms and carepathways to provide culturally sensitiveservices in Aboriginal communities and indiverse ethnic communities. (Con, 2008)Advance care planning, based on the person’sbeliefs and values is key.

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

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 ofa life-limiting illness. For example, Winnipeg’sregional palliative care program works closely


Primary, community and acute care practitioners needinformation and education as well as the support ofspecialized palliative care services that can help assessand identify those patients who can be cared for bytheir own providers in the settings where they are aswell as those who need more complex, specialized care.(CHPCA, 2013)


with 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 with

renal disease. (Personal communication:Carolyn Tayler, Fraser Health Authority, 2013)

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

In Central Australia, the program has a strong focus oncommunity outreach to Aboriginal care workers and non-Aboriginal workers who work with Aboriginal communities.Innovations include a one-day workshop facilitated by anAboriginal Educator on how to work respectfully withAboriginal clients. (CHPCA, 2013)

“[In an integrated palliative approach] it’s important torecognize everyone’s strengths. Our palliative care consultantsare not the renal or critical care experts. Our program ismoving toward a model of education that is less didactic andmore role playing: working with staff in all [programs] tounderstand their own attitudes to end of life and the tensionsthey feel about what’s happening within health care system.

The practitioners themselves are realizing that they need thebasic skills to look after their patients, and that not everyoneneeds specialized services when they are nearing the end oflife.” (Personal communication: Carolyn Tayler, Fraser HealthAuthority, 2013)


Care Settings and Providers: Find Practical Ways to Deliver the 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, life-limitingdisease. Most (57%) will have Alzheimer’sdisease and/or another dementia.(Canadian Institute for Health Information,2010) And 70% of all individuals withdementia will die in a long term carefacility. (Mitchell et al., 2005)

Because people in residential facilities arevulnerable, death is common. According

to CIHI reports on location of death inwestern and eastern provinces, between16% and 27% of deaths occur in long-term care facilities. (Canadian Institute forHealth Information, 2007 and 2011) Inone long-term care home in Ontario,about 30% of residents die each year.(Personal communication: DeborahRandall-Wood, Lakeland Long-Term Care,2013) These residents would prefer to diein their “home” – the long-term careresidence or facility – rather than behospitalized, and they would prefer toreceive integrated palliative care fromtheir regular care providers. Staff in long-term care have developed goodrelationships with residents and knowthem well. They would prefer to providecare at end of life themselves rather thanhave specialists “parachuted in.”

However, long-term care facilities face anumber of challenges deliveringintegrated palliative care – not least ofwhich are the high rates of dementiaamong residents. It can be difficult toprovide care that reflects the wishes andbest interests of a resident when thatperson may no longer be able to directhis or her care or even communicate thathe or she is in pain. Other challengesinclude: tight budgets; strict staffingratios; and extensive regulatoryrequirements and heavy reliance onpersonal support workers who are only


required to have minimal training and who mayhave had relatively little education or experiencein providing palliative services. Long-term carefacilities can take a number of practical steps toovercome these challenges:

1. Build strong links with specialized hospicepalliative care programs and othercommunity agencies. The services hospiceprograms provide for people dying at home,such as volunteer visiting, should also beavailable for people in long-term care facilities.Trained volunteer visitors can take pressure offstaff and enhance quality of life for dyingresidents. The long-term care facility can alsotake advantage of education available throughspecialized hospice palliative care programsand arrange for it to be delivered in a way thatmakes it accessible to staff without taking toomany away from front-line responsibilities(e.g., 15-minute lunch and learns).

A strong relationship with specialized hospicepalliative services also means the long-termcare facility can access consultation services ifrequired; the goal is to be able to care for theperson in the long-term facility with supportfrom the specialists.

The facility could also develop strong linkswith community organizations, such as theAlzheimer Society, which may be able toprovide training and support in providing theintegrated 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 staffing

strategies; for example, by reducing the dailycaseload from 10 to 8 residents for a personalsupport worker who is caring for someone whois dying and asking other staff to cover 11 or12 residents for that period of time.

“Lakeland Long-Term CareHome maintains palliativecare carts 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 onlya few seconds for staff tocheck a card and then knowwhat to do.” (Personalcommunication: DeborahRandall-Wood, LakelandLong-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 should bemade to put the supplies and information staffneed to provide integrated palliative servicesat hand, in a form and language that isaccessible 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 theintegrated 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 culturally

safe 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, gardeners – everyone.Integrating the palliative approach and

“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,Lakeland Long-Term Care,2013)


providing the hospice palliative care servicesin the long-term care setting requires asignificant culture change. It involves listeningto residents – including those with dementia –and respecting their wishes.

5. Collect data and enhance capacity to “code”palliative residents and monitor impact ofthe integrated palliative approach. Fundingfor long-term care facilities is often calculatedusing a complex formula based on the acuityof residents. In Ontario, that involvescollecting 350 data points on each residentevery three months. The data collection andcoding must be thorough to capture the heavycare needs of people with life-limitingconditions, particularly those in the last weeksor months of life. Collecting this informationcould help facilities make a strong case formore funding.

Data collection can also help long-termfacilities monitor and assess the impact of theintegrated 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;

• and the proportion of residents who die in thehome rather than being hospitalized at time ofdeath.

6. Share best practices within the long-termcare sector. The long-term care sector is aclose community. People are connected and

already meet in chat rooms to discuss commonchallenges and issues. The sector shouldroutinely collect and share information on bestpractices in hospice palliative care in long-termcare – perhaps through regular workshops.This venue would provide an opportunity todiscuss the challenges of integrating apalliative approach in long-term care settings.

7. Talk to families. In many cases, families are notaware of the capacity of long-term carefacilities to provide the 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 to die, rather thanbeing moved to a hospital or hospice.

In the UK, care homes are organized into learning clusterswhere they can discuss any issues they face providing hospicepalliative care services for residents. (CHPCA, 2013)


HOME CAREAll home care programs provide hospicepalliative care services, and many have formalpalliative programs or teams. They are makinga concerted effort to provide more care athome and reduce the pressure on acute carehospitals and thus lessening the cost to healthcare systems. In most cases, formal palliativehome care teams will not be assigned until aperson has been deemed palliative, with nomore than six months to live. However, thiscriterion means that many home care clientswho could die suddenly because of frailty or achronic, life-limiting illness are not benefitingfrom the integrated palliative approach tocare. To ensure all clients have access tohospice palliative services as they age, thehome care sector may consider the followingactions:

1. Implement policy and services guidelinesto support integrated palliative approach

• Increase access to integrated palliative care byreassessing the eligibility criteria for palliativeservices. Many home care programs onlydesignate 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 the 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 health careteam that can address clients’ and families’increasing complex needs.

2. Develop assessment tools to proactivelyidentify clients who could benefit fromthe integrated 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 highrisk of being readmitted or of dyingsuddenly. An assessment tool would helphome care programs identify theseindividuals. The program could then assignthese clients to nurses who are skilled inboth the integrated palliative approach andthe person’s disease or condition. Thenurses could assist with advance careplanning and ongoing assessment toensure clients continue to receive thehospice palliative care services – includingsymptom management – they want andneed integrated with their other care.

Another approach is to ensure all homecare providers are trained in thecomponents of the integrated palliativeapproach so that they can apply these skillsin the care of all clients.

In Kenora, high risk cardiac patients are followed by a cardiacnurse who monitors them closely. As a result, their readmissionrates are only 9% compared to 37% in other parts of theprovince. The same approach could support other clients whowould benefit from the integrated palliative approach.


3. Develop program expectations to changefront-line service provider behaviour, such asall clients will have an advance care plan,providers will engage clients in discussionsabout their prognosis, treatment options andthe benefits and risks associated with theseoptions.

4. Provide targeted education on theintegrated palliative care approach andculturally sensitive care.

• Dedicated palliative home care teams alreadyreceive extensive education in end-of-life care.However, other home care staff will needappropriate training in the 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 allows them toprovide emotional support for clients and forfamily members.

• 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.

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 the


benefits and risks of different treatments forlife-limiting conditions, and criteria andreminder systems that trigger teams to revisitcare plans and goals of care. Non-regulatedstaff (e.g. personal support workers), many ofwhom have varying education backgroundsand literacy skills; will need easy-to-use toolsand resources to help them incorporate theintegrated 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 the integratedpalliative approach collaboratively with theclients’ primary care or chronic care teams, soit will be important to develop strong links andeffective ways to communicate within thoseteams, particularly with the leading carephysicians. Home care programs will also needstrong relationships with specialized palliativecare teams so they can seek their advice in thecare of clients with complex needs and makeappropriate referrals if the person’s care canno longer be managed effectively at home.

Home care services can also help clients andfamilies connect with volunteer visiting as wellas other services provided by the hospiceprogram.

7. Support quality and accountability byidentifying and tracking indicators of theintegrated palliative approach. Home careprograms can play an active role in helping thehealth care system assess the impact of theintegrated palliative approach on clientoutcomes, provider satisfaction and use ofhealth care resources. Indicators could include:

• client satisfaction;

• management of pain and symptoms;

• provider satisfaction;


• hospital readmissions – including frequency andlength of stay;

• cost of care;

• and cost savings.

It will be important todevelop strong links and

effective ways tocommunicate within care

teams, particularly with theleading physicians.

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.When aggressive interventions are no longerindicated, people who are dying are oftenreferred to specialized palliative care teams. As aresult, primary care physicians have lost skillsrelated to hospice palliative care interventions.

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 end oflife. The challenges the primary care sector facesin providing an integrated palliative approach tocare include: a lack of skills in applying theintegrated palliative approach in primary care;compensation models that do not remunerateprimary care practices for the time required to

provide end-of-life care; and the varied models ofprimary care. For example, it can be extremelydifficult for an individual practitioner to providethe integrated palliative approach, while it maybe easier for primary care practices/teams,particularly those with nurses and nursepractitioners, to take on a significant amount ofboth advance care planning and end-of-life care.The following actions can help integrate palliativeservices into primary care:

1. Identify the members of the primary careteam who will champion the 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 withhospice palliative care practice policies and beable to provide care in key areas of theintegrated palliative approach. Primary carepractices may choose to identify a nurse towork with patients who are frail or have achronic life-limiting illness, whose role will beto coordinate with home care and otherservices and ensure seamless transitionsbetween care settings.

2. Ensure appropriate, ongoing education.Members of the primary care team will neededucation in the integrated palliative approachto care. Teams can connect with specializedpalliative care services to access this training.Education should include: advance careplanning, plans of care, communicating withindividuals and families, pain and symptommanagement, and other services available inthe community. Primary care practitioners

Primary care practitionersshould also be educatedin such a way that theyare able to provideculturally safe andappropriate palliativecare for Aboriginalpeoples, and people ofdiverse cultures.


41

should also be educated in such a way thatthey are able to provide culturally safe andappropriate palliative care for Aboriginalpeoples, and people of diverse cultures.

3. Identify individuals who could benefit fromthe integrated palliative approach. Asignificant number of patients who receiveprimary care will likely have health conditions,such as frailty or a chronic illness that put themat risk of being hospitalized or dying suddenly.With an effective assessment tool, primarycare practices can identify these individualsand develop a mechanism to manage theircare and monitor their well-being. People atrisk would be a priority for advance careplanning, physicians or other members of theteam would: talk with them about their health,their prognosis, treatment options and theirpotential benefits and risks. Each of theseindividuals would then have an advance careplan and goals of care that reflect his or hervalues.

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 life-limiting conditions,and criteria 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 theintegrated palliative approach in primarycare. Primary care practices should routinelycollect data on key indicators of the integrated



palliative approach 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 and algorithmsare followed routinely;

• patient satisfaction;

• the avoidance of emergency room visits andhospitalizations;

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

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

A sizable proportion of Canadians with chronicillnesses such as cardiac disease, renal failure andCOPD will be hospitalized or will visit hospital-

based clinics. This gives chronic diseasemanagement teams in the acute care sector aunique opportunity to ensure better access to anintegrated palliative approach earlier in thecourse of an illness, thereby enhancing patients’quality of life and engaging them in their owncare.

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

1. Develop policies/expectations to guide theintegrated palliative approach in theprogram.

• 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 providethe integrated palliative approach to care.Acute care programs that see a large numberof patients who are frail or who have life-limiting conditions can work with thespecialized palliative care program in theircommunity to develop the skills and protocols

Many practitioners working in acute care settings are frustratedby the current challenges in practice. They recognize that thereare limited health care 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 health care 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.


to incorporate the integrated palliativeapproach in their everyday practice. Theseacute care programs may consider identifyingindividuals on their teams who demonstrateparticular skills in the integrated palliativeapproach to champion these practices andmentor/educate others.

3. Educate acute care staff about servicesavailable in other settings. Acute careprograms may be reluctant to dischargepatients either to their homes or to a long-term care facility because acute care staff maybe unaware of the level of complex care thatcan be provided safely in the above settings.Acute care staff should receive educationabout the services available and, wherepossible, visit these other settings in order toidentify more effective ways to collaborate toimprove patient care – both throughout along-term illness and at end of life. Thiseducation should help acute care staff knowwhen someone can be discharged from thehospital to their preferred setting for care.

4. Identify and track indicators of the integratedpalliative approach in acute care. To assessprogress implementing the integratedpalliative approach and its impact, acute careprograms should routinely collect data on keyindicators of the integrated palliative approachto care including:

• 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.

Between 60% and70% of Canadians

still die in thehospital, and only asmall proportion of

those die indedicated palliative

care units.


V. Next StepsThis version of The Way Forward National Framework: A Roadmap for the IntegratedPalliative Approach to Care is the first step in reaching out to stakeholders from across thecountry to seek their advice and gather their feedback.

Developed with the guidance of The Way Forward Advisory Committee and members of theQELCCC, the framework will be shared widely with organizations and individuals acrossCanada, including First Nations, Inuit and Métis groups, who are intensely interested in thehealth needs of the growing number of aging people in Canada, the future of hospicepalliative care, and the sustainability of our health care system.

The Way Forward Initiative will be seekingadvice and gathering constructive feedback.

Questions to be considered will include:

will the framework help progress the fieldof hospice palliative care?

How can we make hospice palliative careservices stronger and more useful?

what else is required to enable peoplethroughout the health system – fromfunders to people delivering services on thefront lines – to provide the integratedapproach to palliative care and realize itspotential to:

• improve health outcomes;

• give people in Canada more say in theircare;

• ensure seamless transitions between caresettings for people near end of life;

• make better use of skills and resources;

• contribute to the sustainability of ourvalued publicly funded health care system?

Be part of the conversation. Visit www.hpcintegration.ca


AppendixQuality End-of-life Care Coalition of Canada

Coalition Members

ALS Society of Canada

Alzheimer Society of Canada

Canadian AIDS Society

Canadian Association of the Deaf

Canadian Association of Occupational Therapists

Canadian Association for Spiritual Care

Canadian Association of Social Workers

Canadian Breast Cancer Network

Canadian Cancer Society

Canadian Cancer Action Network

The College of Family Physicians of Canada

Canadian Healthcare Association

Canadian Home Care Association

Canadian Hospice Palliative Care Association

Canadian Lung Association

Canadian Medical Association

Canadian Nurses Association

Associate Members

Canadian Arthritis Patients Alliance

Canadian Caregiver Coalition

Canadian Virtual Hospice

Long Term Care Planning Network

Canadian Pharmacists Association

Canadian Society of Palliative Care Physicians

Canadian Society of Respiratory Therapist

Canadian Working Group on HIV and Rehabilitation

Catholic Health Alliance of Canada

The GlaxoSmithKline Foundation

Heart and Stroke Foundation of Canada

Huntington Society of Canada

Kidney Foundation of Canada

Mental Health Commission of Canada

National Initiative for Care of the Elderly

Ovarian Cancer Canada

Saint Elizabeth Health Care

VON Canada

The Pallium Foundation

Women's Inter-Church Council of Canada


ReferencesBakitas M, Lyons KD, Hegel MT, et al. Effects of a palliative care intervention on clinical outcomes in patients withadvanced cancer: The ProjectENABLE 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. May 2012

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 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.

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

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

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. 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

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 Tayler, 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

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.

The Way Forward Integration Initiative

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

email: [email protected]: 1-800-668-2785 ext. 228fax: 613-241-3986

www.hpcintegration.ca

www.hpcintegrat ion.ca

THE WAY FORWARD NATIONAL FRAMEWORK Way Forward... · Effective ways to monitor and measure the...

Documents

Transcript of THE WAY FORWARD NATIONAL FRAMEWORK Way Forward... · Effective ways to monitor and measure the...