sw end of life care network annual report 06-07 · person’s life. another important aspect of...

Annual Report(June 2006 – August 2007)

Including Goals for the

Coming Year

South West End-of-Life Care Network

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Message from the Network Co-chairs

Change is a constant in health care as it is in life. And with change can come opportunity.

A series of recent changes within the health care system in Ontario created an important opportunity for those of us providing care to individuals with progressive,life-threatening illnesses and their families.

One fundamental change was that, in 2005, the Ontario government identified end-of-life care as a priority. This resulted in the announcement of a provincial End-of-Life CareStrategy which has begun to shift care of individuals in the last stages of life fromacute care settings, enhance interdisciplinary approaches to care in the community,and create a more coordinated and integrated system of local services.

At the same time, the introduction of local health integration networks (LHINs) and the alignment of community care access centres with the new LHIN boundaries hasbrought providers of hospice palliative care together from across broader geographiesand expanded our opportunities to do an even better job of learning from each otherand creating improved, common approaches to care.

Each day in the South West, we more fully understand how working together as an alliance of community agencies, hospitals, long-term care homes, a regional cancerprogram, and other stakeholders improves the quality of care we provide as individualorganizations. In addition to describing the Network’s progress to date, this reportidentifies even more possibilities that we plan to grow into.

A special thank you to all our members who’ve been with us through the formativestages of our Network, and an enthusiastic welcome to those who have recently joinedus or who are about to join us.

Network Co-chairs

Gale Turnbull Donna LadouceurManager, Supportive Care & Education Senior Director, Client ServicesLondon Regional Cancer Program South West Community Care Access Centre


Message from the Network Director

When I became the first Director of the South West End-of-Life Care Network in June2006, a lot of the foundational work to improve hospice palliative care services inSouth West Ontario had already begun. Cross-sector end-of-life care service deliveryplans had been adopted in the areas of Grey-Bruce, Huron-Perth, London-Middlesex,Oxford, and Elgin. Common assessment tools, expected death in the home protocols,symptom response kits, and other innovations had been introduced in many of theseareas. Community care access centres (CCACs) had established dedicated teams ofend-of-life care case managers and oncology care coordinators. And the South West(as well as the neighbouring counties that now make up Erie – St. Clair) already en-joyed the expertise of a well-established team of palliative pain and symptom management consultants.

In the last fifteen months, our Network has made progress in these areas and more.We’ve supported the Provincial Palliative Care Integration Project (led provincially byCancer Care Ontario and regionally by the London Regional Cancer Program) so thatnow many more clinicians in hospital and community settings are using the same evidence-based assessment tools. We’ve rolled out two powerful communication vehicles, an eight-minute video entitled, Dying in the Home: One Family’s Experience, and a well-used Network mini-website. Both have received attention throughout theprovince. And we’ve begun to collect data on important system indicators, startingwith the number of in-home clients who are able to die in their location of choice.Many other strategic activities are well underway and are described in this report.

Make no mistake; we still have a long way to go. 24/7 support still isn’t a reality foreveryone in the South West who might wish to die at home. We still have the challengeof a shortage of health care workers — especially those with expertise in hospice palliative care — to overcome. But we’re confident that, in the coming year, we’ll con-tinue to improve the system of care for individuals with progressive, life-threatening illnesses and their families.

It’s been my privilege to work with a group of professionals who so clearly put patientand family care front and centre. Their energy and dedication is remarkable. I’m look-ing forward to the coming year.

Paul CavanaghDirector, South West End-of-Life Care Network

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Table of Contents

Message from the Network Co-chairs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . iii

Message from the Network Director . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . iv

What Do We Mean By End-of-Life Care, Palliative Care, and Hospice Care? . . . . . . . . . . . . . . . . . . . . 3

The Case for Hospice Palliative Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4How we die . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4Where we die . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4Access to and the need for hospice palliative care services . . . . . . . . . . . . . . . . . . . . . . . . . . . 4The benefits of hospice palliative care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4

The South West End-of-Life Care Network . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5

Progress Made So Far . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6Shift care of the dying from the acute setting to appropriate alternate settings of individual preference . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6

Expansion of Community Care Access Centre end-of-life care services . . . . . . . . 6Release of “Dying in the Home: One Family’s Experience” video and user’s guide . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6Development of residential hospices in Woodstock, London, and Grey-Bruce . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7

Enhance client-centred and interdisciplinary end-of-life care service delivery capacity in the community . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8

Continued expansion of number of care providers with hospice palliative care training . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8Implementation of Expected Death in the Home (EDITH) protocols . . . . . . . . . 10Implementation of Symptom Response Kits in the home . . . . . . . . . . . . . . . . . . . 10

Improve access, coordination and consistency of services and supports across the South West . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11

The Provincial Palliative Care Integration Project . . . . . . . . . . . . . . . . . . . . . . . . . . . 11Refinement and expansion of the Network website . . . . . . . . . . . . . . . . . . . . . . . . 13Interdisciplinary rounds . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13

Other progress in the South West not directly related to one of the provincial strategy’s objectives . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 14

Development of system performance measures . . . . . . . . . . . . . . . . . . . . . . . . . . . . 14Raising the profile of hospice palliative care with the South West LHIN . . . . . . 14Supporting local end-of-life care service delivery planning committees . . . . . 15

A Continued Need for Inpatient Palliative Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 16


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Goals for the Coming Year . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 17Shift care of the dying from the acute setting to appropriate alternate settings of individual preference . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 17

Possible regional palliative care consultation service . . . . . . . . . . . . . . . . . . . . . . . 17Community physicians providing palliative care . . . . . . . . . . . . . . . . . . . . . . . . . . . . 17CCAC policy option for a final community service provider visit to a family after the death of a client . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 17Relaxation of the CCAC service maximum regulation for clients receiving end-of-life care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 18

Enhance client-centred and interdisciplinary end-of-life care service delivery capacity in the community . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 19

Common advance care planning processes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 19Physician education in palliative care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 19Spiritual assessment and care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 19Paediatric hospice palliative care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 20Links with the Seniors Health Research Transfer Network . . . . . . . . . . . . . . . . . . . 20

Improve access, coordination and consistency of services and supports across the South West . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 21

A common chart for hospice palliative care clients in the home . . . . . . . . . . . . . 21The Pan-Canadian Gold Standards for Palliative Home Care . . . . . . . . . . . . . . . . . 21Better integration of volunteer services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 22

Other goals in the South West not directly related to one of the provincial strategy’s objectives . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 23

Sustaining the network director position . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 23

Appendix A: Quick Facts About South West Ontario . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 24

Appendix B: Features of Good Hospice Palliative Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 26

Appendix C: Network Committees . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 27South West End-of-Life Care Network Steering Committee . . . . . . . . . . . . . . . . . . . . . . . . . 27South West End-of-Life Care Network Editorial Committee . . . . . . . . . . . . . . . . . . . . . . . . . 29South West End-of-Life Care Network Research & Evaluation Committee . . . . . . . . . . . . 29South West End-of-Life Care Network Communication Strategy Committee (ad hoc) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 30Local end-of-life care planning committees . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 30

References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 31


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What Do We Mean By End-of-Life Care, Palliative Care, and Hospice Care?

All three terms are related to one another, but there are a few important distinctions.

Palliative care focuses on optimizing quality of life for patients with progressive life-threatening illnesses and their families. It aims to prevent and attend to physical, psychosocial,and spiritual suffering. It has a role all along a patient’s illness trajectory.

Hospice care shares these principles. However, while palliative care programs developed pri-marily within larger health care institutions, hospice care developed within the community asfree-standing, primarily volunteer programs.

The term hospice palliative care was coined to recognize the convergence of hospice andpalliative care into one movement that has the same principles and norms of practice.1

End-of-life care refers specifically to services provided to patients who are dying from an advanced life-threatening illness. Support continues to be provided to families at this phase.

The following diagram from the Canadian Hospice Palliative Care Association’s national consensus model shows how individuals with progressive life-threatening diseases can receivetreatment to modify their disease and hospice palliative care at the same time. In other words,the initiation of hospice palliative care services doesn’t need to wait until the last few days of aperson’s life.

Another important aspect of hospice palliative care to recognize is that it includes support forfamilies. That’s why it continues on after the death of the patient to include bereavement support.

The Case for Hospice Palliative Care

How we die• Less than 10% of us will die of a sudden event such as a heart attack or an accident.2

• The rest of us (>90%) will die of a protracted life-threatening illness.3

• In Canada, more than 259,000 people die each year.4

• Statistics Canada estimates that, by the year 2020, the rate of deaths nationally will increaseby 33% to more than 330,000 deaths per year.5

Where we die• In 2000, approximately 75% of deaths took place in hospitals and long term care homes.6

• A recent poll found that approximately 80% of Canadians would prefer to die at home.7

Access to and the need for hospice palliative care services• The Canadian Hospice Palliative Care Association estimates > 160,000 (or approximately

62%) of current annual deaths require access to hospice palliative care services.• The Canadian Association of Community Care reports that only 10% of dying Canadians

receive integrated and interdisciplinary palliative care.• Each death potentially affects the immediate well being of an average of 5 other people, or

more than one million Canadians each year.

At some time, in some way, we must all face the end of life. And most of us share a common hope – that when death comes to us or to a loved one, it will be peaceful and free of pain. We hopeto face death surrounded by those we love, feeling safe, comfortable and cared for.8

The benefits of hospice palliative care

Research tells us that hospice palliative care is• Patient-centred and family-centred.9

• Beneficial (in terms of reduced symptom burden, improved patient and family satisfaction).10, 11, 12, 13, 14, 15

• Cost-saving (reducing hospital and ICU length of stay while providing compassionate care).16, 17

But research also tells us that• Patients are often referred to hospice palliative care services too late to receive maximum

benefit (late referrals are associated with lower satisfaction, more unmet needs, lower confidence, and more concerns about coordination).18

• This is true in the hospital, in the community, and in long-term care homes.

For a listing of the features of good hospice palliative care, see Appendix B.

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The South West End-of-Life Care Network

In October 2005, the Ontario Government announced an investment of $115.5 million overthree years in support of a provincial End-of-Life Care Strategy. The objectives of the strategyare to1. Shift care of the dying from the acute setting to appropriate alternate settings of individual

preference2. Enhance client-centred and interdisciplinary end-of-life care service delivery capacity in

the community3. Improve access, coordination and consistency of services and supports across the province

The announced funding is being used to provide more and improved end-of-life home care (to alleviate pressures on the acute sector), support nursing and personal support services inexisting and proposed residential hospices, and strengthen the role of volunteer hospice programs. Funding was also designated to support the planning and integration of local hospice palliative care services through the establishment of End-of-Life Care Networks acrossthe province.

Although the South West End-of-Life Care Network takes its name from the provincial End-of-Life Care Strategy, the Network’s concerns go beyond end-of-life care and extend into hospicepalliative care as a whole. The Network is an alliance of community agencies, hospitals, long-term care homes, and other stakeholders who are all working together to improve hospice palliative care services in South West Ontario (the area defined by the boundaries ofthe South West Local Health Integration Network or LHIN). For Quick Facts about South WestOntario, go to Appendix A.

The Network is not an incorporated body; it has a representative steering committee ratherthan a board. It is accountable to its member agencies and their clients, the Ministry of Healthand Long-Term Care (MOHLTC), and the South West LHIN. It works collaboratively with CancerCare Ontario (through the London Regional Cancer Program) and the Palliative Pain and Symptom Management Consultation Program that serves the Erie – St. Clair and South WestLHINs. It also has a contractual arrangement with its host agency (the South West Community Care Access Centre). A description of the Network’s committee structure can be found in Appendix C.

For more information, visit the link to the Network’s website which can be found at www.thehealthline.ca. Look for the End-of-Life Care Resources icon.

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Progress Made So Far

In 2006-2007, the following progress was made toward achieving the three objectives of theprovincial End-of-Life Care Strategy in the South West:

Shift care of the dying from the acute setting to appropriate alternate settings of individual preference

Expansion of Community Care Access Centre end-of-life care services

As part of the provincial End-of-Life Care Strategy, community care access centres(CCACs) in Grey-Bruce, Huron, Perth, London-Middlesex, Elgin, and Oxford received$1,891,500 in additional funding to expand in-home end-of-life care services in2006/07. On January 1, 2007, these 6 CCACs, plus a portion of the Haldimand-NorfolkCCAC, merged to form the South West CCAC, the boundaries of which align with thoseof the Local Health Integration Network.

During 2006/07, the South West CCAC (and its predecessors) provided end-of-life careto 2676 clients and families.

The South West CCAC has special teams of case managers across its geography thatspecialize in hospice palliative care. These teams also include an Oncology Care Coordinator whose role is to help clients with cancer navigate their way through theservices and resources available to them even if they do not need in-home services.

The special teams of case managers (now referred to as Supportive Care ResourceTeams) were created prior to the amalgamation of the CCACs, and so efforts are nowunder way to ensure that a consistent approach to end-of-life care case managementis being used across the South West.

A greater proportion of CCAC clients now have the option of dying at home than wasthe case before the End-of-Life Care Strategy was implemented. Precise percentagesare difficult to provide due to variations in how the predecessor CCACs collected andrecorded information on a client’s location of choice. However, the South West CCAChas initiated a process whereby this important indicator can be reported reliably in thecoming year and into the future.

Release of “Dying in the Home: One Family’s Experience” video anduser’s guide

Dying in the Home: One Family’s Experience is an 8-minute video produced for the SouthWest End-of-Life Care Network. It shows one family caring for a loved one as she livesout her final days at home. The message of the video is that, although dying in thehome is not for everyone, there are many services and supports available to familieswho choose this option.

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The video provides an avenue for engaging various people in discussions about end-of-life care: individuals with progressive life-threatening illnesses, their families,volunteers, spiritual care providers, personal support workers, health care professionals,planning agencies; in fact, anyone with a stake in hospice palliative care.

The user’s guide suggests ways the video can be used to maximum effect. For instance,tips are given on how to set up public viewings, how to organize panel discussions,and how to link the video with other valuable sources of information such as the SouthWest End-of-Life Care mini-website at www.thehealthline.ca. As informative as thevideo is on its own, its added value is in its ability to stimulate further discussion.

Four hundred kits (including the DVD and user’s guide) have been distributed so far.The video was available for viewing on the Network website from March to July 2007.There were 525 views of the video on-line in the first 75 days after it was posted. Aposter display highlighting the video and the Network website, authored by the Network, thehealthline.ca, and the South West CCAC, won first prize at the 2007 OntarioPalliative and End-of-Life Care Conference.

The focus in the coming year will be to further promote the video and to survey agen-cies to whom it was distributed to assess its effectiveness as a communication tool.

Development of residential hospices in Woodstock, London, andGrey-Bruce

In October 2005, the Ministry of Health and Long-Term Care announced partial operating funding for two new residential hospices, one in Woodstock and one in London. In addition, Grey-Bruce was invited to submit a proposal for a residential hospice. Up until now, there has been only one residential hospice in operation in theSouth West, the John Gordon Home, operated by the London Regional AIDS Hospice.

Residential hospices are settings where hospice palliative care is provided in a home-like environment. They provide an alternative to dying at home, particularly for familieswho do not want the memory of a loved one’s death having occurred in their home or,for various reasons, are unable to provide care at home. Residential hospices can alsobe a place for people who don’t have family resources to draw on.

In Woodstock, a 10-bed residential hospice (named Sakura House) will be located in ahouse generously donated by Toyota. It will be operated by the Victorian Order ofNurses (Oxford County). It’s anticipated that it will open its doors to its first client byFall 2008. Costs of renovating the house are around $1.5 million and capital fundraisinghas been challenging. The Ministry of Health and Long-Term Care will provide$580,000 annually for costs associated with personal and nursing care. The VON willalso be responsible for raising funds annually to pay for operating costs not covered bythe Ministry including building occupancy, maintenance, and meal preparation.

In London, a new 10-bed residential hospice is being planned. It will be operated byHospice of London. A public capital campaign will be launched once commitmentshave been secured from major donors for about 50% of funds. The projected total

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capital cost is $2.95 million. Just as in Woodstock, Hospice of London will be responsi-ble for annually raising funds to pay for operating costs not covered by the Ministry. Atthis point, the opening of the London residential hospice is projected for 2008.

In Grey-Bruce, neither a location nor an operator has been selected yet, although various options are being considered. It’s anticipated that a formal proposal will besubmitted to the South West LHIN and the Ministry in the near future. However, there issome question whether the Ministry funding model, in its current form, will allow Grey-Bruce to develop a residential hospice solution that adequately serves its widely-dispersed population. The planning group in Grey-Bruce will consult with the HospiceAssociation of Ontario to determine whether other rural communities that have beeninvited to submit residential hospice proposals have similar issues.

Funding for these residential hospices is being flowed through the South West CCAC.CCACs were chosen by the Ministry as flow-through agencies for the following reasons:

• To encourage a close link between residential hospice and CCAC services (including case management).

• To give each residential hospice the option of using CCAC service provideragencies to provide care in the hospice (as opposed to the residential hospicerecruiting and managing all its own staff ).

• To facilitate Ontario Drug Benefit Program applications for residential hospiceclients.

As planning continues, it will be important to reach a shared understanding amongpartners in the current hospice palliative care system about the role that residentialhospices will play. For instance, admission criteria will need to be clearly articulatedand understood by everyone. To this end, the Network will sponsor meetings of hospice palliative care partners as each residential hospice is about to open that willinclude, but not necessarily be limited to the residential hospice operator, the SouthWest CCAC and its service provider agencies, long-term care homes, hospitals, the London Regional Cancer Program, the Palliative Pain and Symptom Management Consultation Program, Family Health Team administrative leads, Community HealthCentres, faith community partners, and the South West LHIN.

The Network, in partnership with the residential hospices, will also undertake to reporton access relative to demand, utilization, quality indicators, and overall impact on thesystem.

Enhance client-centred and interdisciplinary end-of-life care service delivery capacity in the community

Continued expansion of number of care providers with hospicepalliative care training

The Palliative Pain & Symptom Management Consultation (PPSMC) Program in theSouth West and Erie – St. Clair LHINs is a leader in the development and delivery of

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hospice palliative care education. The Program developed a series of well-respectededucational programs using adult education principles and following the nationalconsensus model for hospice palliative care:

• The Fundamentals of Hospice Palliative Care (30-hour introductory course);• Comprehensive Advanced Palliative Care Education (CAPCE – for registered

nurses and registered practical nurses); and• Advanced Hospice Palliative Care Education (AHPCE – for unregulated health

care providers).

These educational programs have been adopted in many places across the province.

The PPSMC Program’s consultants, who are registered nurses certified in hospice palliative care nursing, support learners through ongoing coaching and mentoring.The focus is on transfer of knowledge to practice. The consultants also engage seniorleadership at the learner’s place of work to promote practice change.

Palliative Pain & Symptom Management Consultation services exist across theprovince and support service providers in home care agencies (CCACs and contractedproviders), long-term care homes, community support services, and primary care. PPSMCconsultants:

• Assist service providers in the application of the national consensus model, assessment tools, and best practice guidelines.

• Offer consultation to service providers in person, by telephone, by videoconference, or through e-mail regarding care (e.g. assessment and management of pain and other symptoms).

• Provide case-based education and mentoring for service providers.• Help build capacity amongst front-line service providers in the delivery of

hospice palliative care.• Link providers with specialized hospice palliative care resources.

The service does not provide direct client/patient assessment or care planning. As part of an education/coaching activity with a service provider, a client/patient may be present, however, the service provider remains the one responsible for the care.19

The role of the Network is to offer advice and support for the provision of the PalliativePain & Symptom Management Consultation Program across the South West. All thePPSMC consultants, as well as the Program Coordinator, are members of the NetworkSteering Committee. Several of the consultants also serve on the Network’s Editorialand Research and Evaluation Committees.

In 2006-07, approximately 500 health care providers participated in The Fundamentalsof Hospice Palliative Care, AHPCE and CAPCE in the South West, and more than 1300hours of consultation/capacity building was provided to approximately 3500 healthcare providers.

Although many organizations across the South West have had staff complete The Fundamentals, CAPCE, and/or AHPCE, a variety of other educational programs in

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hospice palliative care are available. For instance, some volunteer hospice programsprovide in-house training for their volunteers as opposed to signing them up for theFundamentals course.

In the coming year, the Network will work towards achieving a consensus on hospicepalliative care education standards for the South West. This is not to say that any oneset of programs, like those offered by the Palliative Pain & Symptom Management Consultation Program, will be adopted as the standard. Rather, efforts will be made toreach agreement on what are the characteristics of good hospice palliative care education (e.g. based on adult education principles, actively facilitates the transfer ofknowledge to practice). This would allow for the recognition and endorsement of a variety of different educational programs, while ensuring that they all meet certain cri-teria. In addition, the Palliative Pain & Symptom Management Consultation Programsin the South West and Erie – St. Clair will work with the Hospice Association of Ontarioto ensure that community hospice programs that train their volunteers using The Fundamentals and AHPCE programs continue to meet HAO’s accreditation standards.

Implementation of Expected Death in the Home (EDITH) protocols

An Expected Death in the Home (EDITH) protocol is put in place prior to the death of a client at home (in consultation with the client’s family physician) in order to avoid delays in the pronouncement of death and completion of the death certificate thatcan lead to increased stress for families and uncertainty for nurses. EDITH protocols arealso meant to avoid delays in the removal of the deceased person from the home bythe funeral director.

EDITH protocols have been implemented in most areas of the South West. In areas,such as in Huron-Perth, where these protocols are not yet in place, there is a recognized need to establish such a formal process. Delays in the introduction of thenew provincial Do Not Resuscitate Standard and Confirmation Form have complicatedthe establishment of EDITH protocols somewhat. The new form will allow a person’swishes to be honoured during ambulance transfers from home or between facilities. Itwill come into effect on February 1, 2008. Education of nurses, firefighters, paramedics,and physicians began in September 2007. The Network is using the teleconferences fornurses as an opportunity to recruit individuals who are interested in taking part in abroader discussion on how hospitals, long-term care homes, and in-home services inthe South West might adopt a more coordinated approach to advance care planning(see Common Advance Care Planning Processes later in this report).

It’s anticipated that EDITH protocols will be established in the remainder of the SouthWest within the coming year.

Implementation of Symptom Response Kits in the home

Symptom Response Kits (also known as Symptom Management Kits) are placed inclients’ homes so that a range of medications are available on an emergency basis torelieve unanticipated symptoms at the end of life. The kits are meant to limit client

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suffering caused by delays in obtaining previously unprescribed medications and todecrease utilization of emergency departments. These kits are not meant to be a substitute for good treatment planning.

One local working group in Grey-Bruce has proposed evaluating the use of the kitsalong the following dimensions:

• Medications actually used• Time required to access physician orders• Adequacy of supplies• Visits to emergency actually prevented and hospital admissions prevented or

delayed• Client satisfaction

Preliminary evaluation results in Grey-Bruce suggest that, since the kits were implemented there in December 2006, supplies have been adequate. There is also anecdotal evidence of client satisfaction. As the kits become available throughout the entire South West in the coming year, the South West CCAC will lead discussions withkey members of the local end-of-life care committees on adopting a uniform approachof evaluating the kits’ effectiveness.

Improve access, coordination and consistency of services and supportsacross the South West

The Provincial Palliative Care Integration Project

The Provincial Palliative Care Integration Project (PPCIP) is a continuous quality improvement project led by Cancer Care Ontario, designed to improve palliative careby introducing the following tools:

• Evidence-based common screening and assessment tools (the EdmontonSymptom Assessment Scale and the Palliative Performance Scale) to identify patients in need of care and to determine the type of care needed

• Symptom management guidelines• Collaborative care plans for patient care

The objectives of the project are to: • Improve assessment of symptoms • Improve interdisciplinary communication• Improve symptom management• Decrease or attend to patient suffering

In the South West, the project, based at the London Regional Cancer Program, is led bya Regional Improvement Coordinator and a physician lead who is a member of theCancer Care Ontario Palliative Care Committee. The physician lead is also the Directorof Palliative Medicine for the South West. The Regional Improvement Coordinator actively participates in end-of-life care planning both at the South West End-of-Life

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Care Network Steering Committee and the Network’s Research and Evaluation Committee. Links between the Network and the project are further enhanced by having the Network Director serve on the committee that oversees the project.

In 2006/07, the use of the common assessment tools was promoted at the London Regional Cancer Program and in the community through the CCAC using a phased approach. At the London Regional Cancer Program (LRCP), approximately 65-70% ofpatients are now screened at least once using the Edmonton Symptom AssessmentScale (ESAS). The use of the Palliative Performance Scale (PPS) is more variable. In themonths January through July 2007, between 30% and 60% of patients at LRCP werescreened using the PPS. To date, gains in the community have been more modest. Inthe London-Middlesex area, approximately 20-30% of CCAC end-of-life care clients arenow screened at least once using the ESAS. In the months January through June 2007,between 18% and 25% of CCAC end-of-life care clients in London-Middlesex werescreened using the PPS.

The common assessment tools have also been introduced for end-of-life home careclients through the CCAC elsewhere in the South West, although data have not yetbeen collected in these other areas. Some community hospitals, not part of the formalproject, have begun to use the tools as well. A few long-term care homes are also beginning to adopt the tools; however, some of them have remarked that the CCACand hospitals do not yet routinely provide them with PPS scores for individuals whoare being admitted to their facilities. The next phase of palliative care service integration will focus on better sharing of assessment results across service sectors(long-term care, home care, primary care, hospitals, and regional cancer care).

The introduction of collaborative care plans is another component of the ProvincialPalliative Care Integration Project. Collaborative care plans define activities, interventions and outcomes that should occur within a specific stage or time frame.Collaborative care plans are designed to place the patient at the focal point of care, to promote continuity and coordination of care, and to promote communicationamongst all disciplines. They are evidence-based and reflect the best practice patternsof all disciplines. Collaborative care plans help to optimize the timing of interdiscipli-nary events, minimize delays and unnecessary variations in care, define expected patient outcomes, improve communication between staff and to patients and familiesand promote patient satisfaction and interdisciplinary collaborative practice. Nursesare responsible for initiating the plans, using them to guide care, and assessing a patient’s progress. The collaborative care plans are a guide to clinical practice butnever replace sound clinical judgment. The plans are part of the permanent patientrecord.20

In the South West, collaborative care plans are in the very early stages of implementa-tion. So far, they have been shared with staff on the London Health Sciences CentreOncology floor, the Palliative Care Clinic at the London Regional Cancer Program, andthe Supportive Care Resource Team at the London office of the South West CCAC.

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Refinement and expansion of the Network website

The South West End-of-Life Care Network inherited a website that was originally devel-oped by a multi-agency palliative care committee in London-Middlesex. In Fall 2006,the Network formed an Editorial Committee to further develop the website, includingexpansion of its scope to the entire South West. The website, hosted by www.the-healthline.ca, now contains links to over 130 video, multi-media, print, and web re-sources on hospice palliative care for health care providers and consumers. It also has a comprehensive, regularly-updated listing of hospice palliative care services in theSouth West. Copies of the Edmonton Symptom Assessment Scale, the Palliative Per-formance Scale, guidelines for their use, and a palliative pain & symptom managementpocket reference guide are all posted in a special health care professionals section.

There were 25,000 visits to the website in 2006 and 20,920 visits in the first half of2007. Results of a user survey (n=25) revealed 50% of participants were consumers,50% health care providers. Ninety-six percent rated the site as an excellent or goodsource of end-of-life care information and 100% would recommend the site.

The Editorial Committee will continue to review the content and organization of the website with a view to making it even more useful for those who visit it. The Committee will discuss methods for more actively soliciting feedback from users. It willalso explore methods for making health care professionals in the South West moreaware of the website’s contents.

Interdisciplinary rounds

Hospice palliative care is, by definition, interdisciplinary in nature. However, given the busy schedules and dispersion of care providers, it can be a challenge to bring together all disciplines to discuss care issues of individual clients. This can be especiallytrue in the community where numerous people from a variety of agencies may be involved in caring for any one client at home.

Interdisciplinary rounds are occurring in several communities within the South West. Insome instances, staff at hospitals or long-term care homes meet to review the care ofpatients/residents who are receiving palliative care in their facilities. A few hospitals(e.g. in Tillsonburg, Strathroy/Newbury, St. Marys, London, and Woodstock) invite community-based service providers to attend. This facilitates the coordination of carefor clients who travel through both the hospital and community care systems.

Apart from improving the coordination of client care, interdisciplinary rounds also provide a venue for hospice palliative care providers to learn from each other and todevelop a sense of collegial support. In some cases, the local palliative pain and symptom management consultant has played a key role in establishing rounds and actively participates in them.

Further opportunities for improving interdisciplinary communication will be exploredin the coming year.

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Other progress in the South West not directly related to one of the provincialstrategy’s objectives

Development of system performance measures

Cancer Care Ontario is in the process of developing a set of province-wide performance indicators for end-of-life care for cancer patients. Indicators considered sofar include:

• Death in the acute care setting• Visits to ER in the last 2 weeks of life• Home care in the last 6 months of life• Physician house calls in the last 2 weeks of life

The Network has begun to identify additional system performance indicators that itcan measure at the LHIN level. As previously mentioned, the South West CCAC hascommitted to consistently tracking the number of CCAC clients who die in their location of choice across the South West (recognizing that their choice may changeduring the course of their illness). This indicator relates directly to the first objective of the provincial end-of-life care strategy which is to shift care of the dying from theacute setting to appropriate alternate settings of individual preference. Once this indicator is established, it may be possible to study why some clients change theirchoice and others don’t.

In Fall 2007, the Network plans to include a set of questions related to hospice palliative care services in the South West CCAC’s client satisfaction survey. The Network’s Research & Evaluation Committee will be tasked with recommending a list of questions to the CCAC.

The Research and Evaluation Committee will also consider other system performance indicators for adoption in the coming year. The Committee will give preference to indicators that:

• Are supported by the hospice palliative care quality research literature• Align with the objectives of the provincial Strategy• Do not impose an undue data collection burden on clinicians

Where possible, these indicators will be chosen in concert with other end-of-life carenetworks across the province.

Raising the profile of hospice palliative care with the South West LHIN

Although hospice palliative care is not one of the priorities specifically identified bythe South West LHIN in its integrated health services plan, the South West End-of-LifeCare Network is actively engaged in the LHIN’s planning activities. The Network Director serves on the LHIN’s Priority Action Team that focuses on the continuum ofcare for seniors and adults with complex needs. The Network’s domains of concern alsoalign with several of the South West LHIN’s other stated priorities including chronic

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disease management and prevention, primary care, access to long-term care, and the development of an electronic patient record. In June 2007, the Network made a presenta-tion to the LHIN’s board about hospice palliative care and the role of the Network.

In the coming year, the Network will engage the South West LHIN in several of itsstrategic activities, with special emphasis on the following:

• Palliative care education for practicing physicians• Development of residential hospices in Woodstock, London, and Grey-Bruce• Development of hospice palliative care system performance measures• Expansion of government-funded bereavement services in the South West• Relaxation of the CCAC service maximum for clients receiving end-of-life care

(request to the Ministry of Health and Long-Term Care for a change in provincialregulation)

Supporting local end-of-life care service delivery planning committees

In late 2004, interagency committees were formed in Grey-Bruce, Huron-Perth, London-Middlesex, Oxford, and Elgin to develop local end-of-life care service deliveryplans that were submitted to the Ministry of Health and Long-Term Care in Spring2005. Funding was received from the Ministry in October 2005 that allowed many butnot all of the elements of these plans to be implemented. In most cases, the local committees continue to meet to oversee the implementation of these plans. The Network Director attends most of these meetings across the South West.

The focus of the local end-of-life care committees remains the implementation of thelocal plans and the management of interagency relationships at the local level. TheSteering Committee of the South West End-of-Life Care Network is made up of representatives from the local committees along with representatives from regionalprograms. The role of the South West Network is to:

• Support and connect the work of the local groups• Oversee initiatives that make more sense to do regionally rather than locally

(e.g. video, website, system evaluation) • Pull together an overall, coordinated strategy for the South West• Act as a common voice to the South West LHIN

The Network Director worked with two local groups (Oxford and Huron-Perth) in thefirst half of 2007 to help them review what progress had been made locally towardachieving their plans. The Director conducted a total of 37 telephone interviews to determine the nature of the hospice palliative care services already being offered bylocal organizations. The results of the interviews were summarized in two reports (onefor Oxford and one for Huron-Perth) that were used to help guide discussions at half-day planning sessions in each county/area.

In the coming year, the Network Director will offer similar support to other local end-of-life care committees with a view to steadily increasing the amount of informationsharing and coordinated planning going on among local groups.

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A Continued Need for Inpatient Palliative Care

While a large proportion of Canadians state that they would prefer to die at home, and despitethe provincial Strategy’s objective of shifting hospice palliative care from the acute setting,there continues to be a need for inpatient palliative care. Patients who elect to die at homemay experience periods when they require admission to a palliative care bed for enhancedpain and symptom management. Certain types of medical complications at the end-of-life aredifficult for families to manage at home. Furthermore, caregivers who are caring for a lovedone at home may burn out due to the high demands placed upon them, even when formalhome care and community support services are available. Experience in other jurisdictionssuggests that even when residential hospice is an option, the need for inpatient palliative careremains. In fact, some people, for various reasons, may still prefer to die in hospital.

Unfortunately, the Ministry of Health and Long-Term Care does not provide designated funding for palliative care beds. Some community hospitals in the South West have curtailedtheir palliative care programs as a way of containing their budgets at a time when demand forthese services is increasing. It should be added, however, that there are also hospitals in theSouth West that are taking steps to enhance their palliative care services.

The South West End-of-Life Care Network has urged the Board of the South West LHIN to recognize the continuing importance of inpatient palliative care as the LHIN enters into negotiations with hospitals this coming year.

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Goals for the Coming Year

Shift care of the dying from the acute setting to appropriate alternate settings of individual preference

Possible regional palliative care consultation service

The current shortage of health care workers, particularly those skilled in hospice palliative care, threatens to limit the availability of in-home services to people who aredying in some parts of the South West. To address this, the Network is forming a taskgroup in early Fall 2007 to consider models for a possible regional palliative care consultation or support service. The group will draw on experiences from within theSouth West (e.g. the role played by CAPCE Resource Nurses in Huron-Perth) and elsewhere (e.g. tele-nursing experiences in the Western provinces; the former HamiltonCCAC’s enhanced palliative care team; Hospice of Windsor and Essex County’s supportive care services, etc.) as a way of making most efficient use of palliative carespecialists in order to provide 24/7 support to families of patients dying at home. Thegroup will also consider whether the service should provide support for long-termcare homes and community hospitals.

Community physicians providing palliative care

Several physicians, many of them family physicians, are skilled at providing palliativecare in the South West. There are other physicians who are willing to provide in-homepalliative care services to their patients if they know they can consult with a trustedpalliative care expert. However, there are currently too few physicians in both thesecategories to provide in-home visits to the number of patients who might wish to dieat home. People who do not have a family physician of their own are particularly vulnerable, given that many physicians, with large caseloads may be reluctant to takeon a new patient who requires intense medical attention.

The Medical Director for Palliative Medicine in the South West is in the process of identifying physicians throughout the region who are interested in providing palliativecare and beginning to offer them educational and clinical consultation support. Efforts will also be made by the Medical Director and the Network to connect withnewly-forming Family Health Teams in the coming year.

CCAC policy option for a final community service provider visit toa family after the death of a client

Some CCACs in the province used to authorize a community service provider (usually a community nurse) to visit a family after the death of the client. The purpose of thesevisits was to avoid the sense that families sometimes have of being “abandoned” by thehealth care team after the death of a loved one and to make sure that the family isaware of bereavement services available in their community. The visit also provided

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some closure to the community service provider, particularly if he or she had workedintensely with the client and family in the final stages of the client’s illness.

Since the adoption of MIS accounting procedures by CCACs across the province several years ago, there has been no provision for authorizing visits when a client hasdied, short of admitting a family member to CCAC services (and then, only if the familymember is eligible). This can be a time-consuming and awkward process for CCAC casemanagers and community nursing staff.

The Network strongly believes that a single visit by a community service provider whohas worked very closely with a client and family should be authorized by the CCACafter the death of a client under certain, defined circumstances (yet to be defined). Thisis consistent with the principle within the hospice palliative care national consensusmodel that the recipient of care is both the client and his or her family and that hospice palliative care does not end with the death of a client.

The South West CCAC will be exploring possible policy alternatives that would allowthese visits to be authorized, while taking into account health care human resourceshortages. (It has been suggested that a policy alternative might also be developedthat would extend to families of individuals who received CCAC services but who dieshortly after being admitted to a long-term care home. This might address situations inwhich staff at the home may not have had time to get to know the individual or thefamily.)

Relaxation of the CCAC service maximum regulation for clients receiving end-of-life care

When the provincial End-of-Life Care Strategy was announced, the Ministry of Healthand Long-Term Care acknowledged that the existing CCAC service maximum regulation would have to be revised for end-of-life care clients. Ontario Regulation386/99 (Provision of Community Services) of the Long-Term Care Act, 1994 states thatthe maximum amount of homemaking and personal support services is 80 hours inthe first 30 days that follow the first day of service, and 60 hours in any subsequent 30-day period. There is a provision that allows CCACs to exceed this maximum underextraordinary circumstances, but only for a period of up to 30 days. This provision issometimes used for clients who are nearing the end of life, but given the difficulty ofaccurately predicting when a client might die, there are occasions when the client maystill be alive after the 30-day exceptional circumstance period has elapsed and still require more than 60 hours per month of homemaking and personal support services.

As for nursing services, the regulation states that a CCAC shall not provide a client withmore than the lesser of the following amounts of nursing services:

1. 28 visits from a registered nurse or a registered practical nurse in a seven-dayperiod

2. The following number of hours of service in a seven-day periodi. if services are provided by registered nurses, 43 hours of serviceii. if services are provided by registered practical nurses, 53 hours of serviceiii. if the services are provided by both registered nurses and registered

practical nurses, 48 hours of service

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There are no provisions for CCACs to exceed this maximum in exceptional circumstances. This can become an issue for clients actively dying at home who need intensive nursing services.

The South West End-of-Life Care Network will work with its other end-of-life care networks throughout the province, the South West CCAC and the Ontario Associationof Community Care Access Centres to lobby the Ministry for a change to this regulation that recognizes the special circumstances of end-of-life care clients and that better supports the Ministry’s strategic objective of shifting care of the dying fromthe acute setting. The Network will also ask the South West LHIN to take up this cause.

Enhance client-centred and interdisciplinary end-of-life care service delivery capacity in the community

Common advance care planning processes

Attempts have been made in Grey-Bruce to develop a uniform process for making surethat hospitals, long-term care homes, community services, and/or emergency healthservices know about individuals’ expressed wishes with respect to care in the event thatthey are unable to speak for themselves. Currently, different sectors of the health caresystem, and different institutions within those sectors, do not use a common process for recording and honouring a patient’s advance care plan. With the roll out of a newprovincial policy related to do not resuscitate (DNR) orders, the Network will be lookingfor opportunities to introduce more consistency into advance care planning processesacross the South West that are in keeping with relevant provincial legislation such asthe Substitute Decisions Act and the Health Care Consent Act.

Physician education in palliative care

The Palliative Pain & Symptom Management Consultation Program and the MedicalDirector for Palliative Medicine in the South West LHIN are collaboratively developingan educational program in palliative care for practicing physicians patterned on a program developed in Windsor and supported by the Change Foundation. The Windsor initiative enrolled community family physicians in a palliative medicine-training program. The program enlisted the learner (family physician) into an interactive situation where real-time feedback and advice was readily available by thepalliative medicine physician. This initiative improved the quality of care received bypalliative care patients and promoted a team-based working environment.

A follow-up proposal is being developed to allow the physician education model to beadapted and rolled out in the remainder of Erie – St. Clair and in the South West. A variety of funding sources are being explored. A meeting involving the Medical Director for Palliative Medicine in the South West LHIN, the Palliative Pain & SymptomManagement Consultation Program Coordinator, key people involved in the Windsorproject, the Network Directors of the South West and Erie – St. Clair End-of-Life Care

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Networks, representatives from the two LHINs, and the Ministry of Health and Long-Term Care will take place in late 2007.

Spiritual assessment and care

Spiritual care is an integral part of hospice palliative care. Spiritual and religious careare not synonymous. For a few patients, religious rituals provide an anchor, but formost, who are not actively affiliated with a particular faith, spiritual care is muchbroader in its scope and may, for instance, involve finding a meaning and purpose toone’s life that is not based on religious beliefs. Research shows that many patients’ spiritual needs are not supported by religious communities and yet between one-thirdand two-thirds of patients want spiritual care.21 Care of the spirit involves all disciplineson some level, not only religious professionals.

Benefits of caring for the spirit include22: • Nurturing resiliency/responding to distress• Improving quality of living (and dying)• Moderating anxiety, hopelessness, and isolation• Enhancing well-being in spite of troubles• Helping families cope (leading to improved public health)

The South West End-of-Life Care Network requires strategies to:• Ensure routine assessment of patients’ spiritual resources and needs• Where necessary, train, mobilize and nurture spiritual care human resources to

respond to the assessed spiritual needs

To this end, the clinically-trained spiritual care specialist who serves as a regional representative on the Network Steering Committee will actively liaise with colleagueswith similar training who are involved in providing hospice palliative care services ineach of the local end-of-life care planning areas within the South West. In addition, thisindividual will be part of the task group considering models for a possible regional palliative care consultation service in order to ensure that spiritual care is a key component of any model that might be adopted in the future.

Paediatric hospice palliative care

To this point, the efforts of the Network have focused on hospice palliative care services for adults. In the coming year, connections will be made with clinicians whoare involved with providing care to children who are dying, including children whomay have been medically-fragile since birth. The membership of the Network SteeringCommittee will also be expanded to include a paediatric care representative.

Links with the Seniors Health Research Transfer Network

End-of-life care networks from across the province have jointly submitted a proposal

to the Seniors Health Research Transfer Network (SHRTN) to develop a provincial

on-line community of practice for end-of-life care. The features of this community of

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practice will be reviewed with a representative from SHRTN at a provincial meeting of

end-of-life care networks in September 2007. Should the proposal be accepted, the

South West End-of-Life Care Network will begin discussions with its members,

including local end-of-life care planning committees, about how these features might

be used to support practice.

In the meantime, SHRTN’s Library Services (including reference services, literature

searching, and document delivery) are available to anyone providing hospice palliative

care services in the community or in long-term care homes. A brochure is posted in the

Health Care Professionals Resources section of the South West End-of-Life Care

Network website.

Improve access, coordination and consistency of services and supportsacross the South West

A common chart for hospice palliative care clients in the home

The way in which home care charts are organized often makes it difficult for membersof the health care team to find the information they need in order to provide effectivehospice palliative care. Documentation procedures varied among the CCACs that existed prior to formation of the South West CCAC and, to a large extent, these geographic variations persist. Complicating matters further is the fact that serviceprovider agencies contracted by the CCAC each have their own charting procedures.This can create confusion about who “owns” different parts of the chart. This is not tosuggest that different community nursing agencies should necessarily be obliged tofollow the same charting format in all respects, more that the chart in the home needsto be better organized so that transfers of information between care providers cantake place more smoothly.

In the coming year, the South West CCAC will be engaging its service provider agenciesin efforts to develop in-home charting procedures that better support patient andfamily care. Attempts will also be made to improve portability of information so thatclients can take key pieces of their medical record with them when they receive services in other settings while ensuring that no part of the medical record is irretrievably lost.

The Pan-Canadian Gold Standards for Palliative Home Care

The Pan-Canadian Gold Standards for Palliative Home Care were released by the Canadian Hospice Palliative Care Association and the Canadian Home Care Associationin December 2006. They define the “gold standard” for each of four home care services:case management, nursing, palliative-specific pharmaceuticals and personal care atthe end of life. The gold standards establish the ideal level of care and support that alljurisdictions should strive to provide for people receiving hospice palliative care services at home. They are designed to encourage and support a consistent approachacross the country to hospice palliative care services at home.

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To achieve these standards, the two associations that authored the report recommendthat all jurisdictions:

• Adopt strategies that will give their citizens timely access (i.e., 24 hours a day,seven days a week) to hospice palliative care services at home – including appropriate pharmaceuticals and equipment — so they feel confident that theycan choose to die at home

• Establish interdisciplinary hospice palliative care teams that make effective useof the skills of each member to support clients/patients and families/caregivers

• Support ongoing hospice palliative care education for members of the healthcare team and family caregivers

• Invest in home care case management and information systems that supportthe interdisciplinary teams and provide information that can be used to evaluate home care services at end of life

• Support ongoing research into good practices for hospice palliative care athome, including the cultural, ethical and spiritual aspects of care

In the coming year, the South West CCAC will develop and lead a process for reviewingthe gold standards and working towards achieving them. The Network will continue to provide support in areas such as working toward 24/7 access, establishing interdisciplinary teams, supporting education, and encouraging the transfer of research knowledge into practice.

Better integration of volunteer services

Volunteer hospice services, as defined by the Ministry of Health and Long-Term Care,are support services where volunteers are recruited, trained, matched with clients andsupervised to provide emotional, social and spiritual support to those who are livingwith a life-threatening or terminal illness and their families. Volunteers may also provide respite and bereavement support.

The primary target of bereavement support is caregivers of clients who were receivinghospice services. This service is not professional grief counselling.

Generally, the client will be matched with one volunteer. More than one volunteer maybe provided where a volunteer is required to stay with a client for long periods of time,and on occasion for 24-hour periods. The hospice volunteer supplements the supportof the family. In some situations, the volunteer may be the only source of support forthe client. A volunteer may follow the client in various settings (not just in the client’shome, but also in places like hospitals or long-term care homes).23

In the South West, there’s been a general drop in referrals for volunteer services thatsupport clients and families leading up to the end of life. The reasons for this are notentirely clear, but it appears that when CCAC case managers recommend volunteerhospice services to clients in the late stages of a life-threatening disease, clients andfamilies are frequently not inclined to accept the recommendation. This may be due tothe fact that clients and families at this stage are often overwhelmed by the number ofcare providers they are dealing with. Furthermore, when volunteers are called upon to

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provide intensive support in the last few days or hours of life, their task is much morechallenging when they haven’t had the chance to get to know the client and familyduring the preceding weeks or months. In some areas of the South West, volunteerhospice programs have attempted to become involved earlier with some clients bymaking a connection with them when they are in hospital, before they return home.

While referrals for volunteer services that support clients and families leading up to the end of life have dropped, it should be noted that there’s been a marked increase inrequests for bereavement support services provided by the same volunteer hospiceprograms.

Interdisciplinary education programs such as The Fundamentals of Hospice Palliativecan help foster a better understanding of the role of the volunteer among participants.However, for this effect to be more widespread, the number of spaces in The Fundamentals program each year will need to increase.

The Network will continue to work with volunteer hospice programs and the SouthWest CCAC to better understand how volunteer services can be more effectively usedto support clients and families earlier on in the illness trajectory. The Network will alsoset out to further articulate the role of hospice volunteers in a regionally-negotiatedaddendum to the Pan-Canadian Gold Standards for Palliative Home Care. Finally, theNetwork will look for ways to expand the availability of government-funded bereavement services where growing demand warrants.

Other goals in the South West not directly related to one of the provincial strategy’s objectives

Sustaining the network director position

In September 2007, the Network Steering Committee will begin a discussion abouthow to sustain the Network Director position. The South West CCAC is paymaster forthe position. $70,000 per year of the CCAC budget is allocated for end-of-life care integration, in keeping with the provincial End-of-Life Care Strategy. (This funding willremain in place beyond the official end of the Strategy). A small percentage of the additional funding that the CCAC received for delivering end-of-life care service hasbeen used to top up the Network budget as per an agreement reached with the Ministry of Health and Long-Term Care’s former Regional Office. The total budget forthe Network in 2007/08 (including salary, benefits, travel and ancillary expenses) is$105,237. The incumbent Network Director has a full-time contract that currently runsuntil March 31, 2008.

Before March 31, 2008, the Network will agree to a plan for sustaining the Network Director position. One of the important roles of the Director will be to continue to keepmembers of the Network Steering Committee engaged and active.

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Wiarton

OwenSound

North SimcoeMuskoka LHIN

Central East LHIN

Central LHINCentral WestLHIN

MississaugaHalton LHIN

WaterlooWellingtonLHIN

Walkerton

Goderich

Stratford

Woodstock

London

St. Thomas

Erie St. ClairLHIN

Hamilton Niagara Haldimand LHIN

London RegionalCancer Centre

South West LHIN


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Appendix A: Quick Facts About South West Ontario

The geography of the South West LHIN contains20 hospitals 1 community care access centre (South West CCAC) 75 long-term care homes 64 community support services 2 community health centres (with 3 in development) 26 mental health agencies 14 addictions agencies

2

1

3

5

4

6

8

7

9

11

10

12

South West LHIN

1314


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Quick Statistics – Cancer Care Ontario - 2006

Total population of SWLHIN 937,918Percentage population over 50 33%Projected new cancer cases in 2007 5,001Projected number of deaths from cancer in 2007 2,148

The South West Local Health Integration Network is also known as LHIN #2

Appendix B: Features of Good Hospice Palliative Care

Hospice palliative care is best delivered by a specially-trained interdisciplinary team. Care canbe provided at home, in hospitals, in long-term care homes or in freestanding hospice facilities.

Hospice palliative care helps make an often difficult life passage both manageable and meaningful for people facing death as well as for their loved ones. The following are features ofgood hospice palliative care:• Provides 24/7 on-call services.• Develops care plans that are consistent with and respectful of the person’s goals of care,

beliefs, values, culture, and personality/coping strategies.• Provides information about diagnosis, prognosis and treatment options; provides guidance

during the process of making treatment decisions.• Assists the person in making informed choices by discussing disease status, prognosis,

etiology of symptoms, assessment of risks and benefits of treatment choices.• Provides guidance and support to people with life-threatening illnesses to promote a

seamless transition from therapy with curative intent to therapy focused on optimal painand symptom management and improved quality of life.

• Assures a peaceful and dignified death in the person’s location of choice.• Assists in effective transitions between settings of care.• Provides meticulous and competent assessments and symptom management consistent

with high quality standards of practice.• Provides support in all domains of care-disease management, physical, psychological, social,

spiritual, end-of-life/death management plus loss and grief.• Supports the person’s search for a renewed sense of meaning, purpose and hope.• Serves as an advocate to help people with life-threatening illnesses receive the necessary

services.• Provides guidance and support as families make the transition from curative to palliative

goals for continued care.• Provides ongoing emotional support and reassurance to family members.

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Membership as of August 2007

Local planning area Member Affiliation

Elgin Lois Beamish-Taylor Closing the Gap (personal care and therapyprovider)

Lynn Graham VON Middlesex-Elgin (volunteer hospice)Anita Grant St. Thomas – Elgin General Hospital

Grey-Bruce Liz Laird Care Partners (nursing provider)Mark Landy Grey-Bruce Health Services (Owen Sound)Marie Palmer Pain and Symptom Management Consultant

Huron-Perth Cathy Dack Blue Water Rest HomeSharon Johnson North Perth Community HospiceJudy White Pain and Symptom Management Consultant

London-Middlesex Eileen Cunningham St. Elizabeth Health Care (nursing, personalcare and therapy provider)

Ray Dilling Hospice of LondonNancy Keat Pain and Symptom Management Consultant

Oxford Grace Breen VON Oxford (volunteer & residential hospice)Ida Tigchelaar Pain and Symptom Management Consultant

Appendix C: Network Committees

South West End-of-Life Care Network Steering Committee

The role of the South West Network Steering Committee is to: • support and connect the work of the local end-of-life care planning committees• oversee initiatives that make more sense to do regionally rather than locally (e.g. video,

website, system evaluation) • pull together an overall, coordinated strategy for the South West• act as a common voice to the South West LHIN• serve as an advisory committee for the Palliative Pain and Symptom Management

Consultation Program

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Local planning area Member Affiliation

Regional The Rev. Graham Bland Spiritual & Multifaith Care, London Health Sciences Centre

Anita Cole South West CCAC Regional Client Services Manager with lead for end-of-life care

Dr. Ingrid Harle Medical Director, Palliative Medicine, SouthWest

Angela Hurtado Community Health Services – Canadian Red Cross

Julie Johnston Palliative Pain & Symptom Management Consultation Program Coordinator

Donna Ladouceur (co-chair) South West CCAC, Senior Director of ClientServices

Karen Palmer Provincial Palliative Care Integration Project Regional Improvement Coordinator

Karen Thompson ParaMed

Gale Turnbull (co-chair) London Regional Cancer Program, Manager Supportive Care & Education

Beth Lambie/Carole Gill/ Erie - St. Clair End-of-Life Care NetworkAnn Brignell

SWLHIN Representative (by special invitation and through receipt of minutes)

Paul Cavanagh Network Director (ex-officio)

Membership as of August 2007

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South West End-of-Life Care Network Editorial Committee

This standing committee of the South West End-of-Life Care Network: 1. Reviews the end-of-life care mini-site at www.thehealthline.ca on a regular, ongoing basis

for currency, quality, and relevance to identified audiences2. Works with the manager of www.thehealthline.ca to determine what material to add,

maintain, or withdraw from the end-of-life care mini-site 3. Works with the manager of www.thehealthline.ca to make sure that the end-of-life care

mini-site is organized as effectively as it can be4. Provides advice and gives direction regarding the development of new sections within the

end-of-life care mini-site for health care professionals, internal network business, and publicreporting

5. Oversees the periodic production and dissemination of newsletters, e-bulletins, or othercommunications that draw attention to the end-of-life care mini-site

6. Seeks out and monitors feedback from end users7. Strives to stay current regarding best practices in end-of-life care8. From time to time, reviews other end-of-life care resource materials that may not be

available through the mini-site but may be in use or are being considered for use within theSouth West End-of-Life Care Network

Principal audiences of the end-of-life care mini-site include:• Individuals with progressive, life-threatening illnesses and their families• Health care and other service providers (including volunteers) involved in end-of-life care• Planning and funding bodies such as the South West Local Health Integration Network, the

Ministry of Health and Long-Term Care, Cancer Care Ontario, and other end-of-life care networks

• Other interested members of the public

Membership as of August 2007Lois Beamish-Taylor, Closing the GapPaul Cavanagh, Network Director (chair)Ingrid Harle, Medical Director, Palliative Medicine, South WestAnne Marie Madziak, Southern Ontario Library Service (also former caregiver)Lisa Misurak, Manager, thehealthline.caSandy Sebo, Coordinator, Volunteer Hospice Program, VON (Middlesex County)Ida Tigchelaar, Palliative Pain and Symptom Management Consultant for Elgin and Oxford

South West End-of-Life Care Network Research & Evaluation CommitteeThis standing committee of the South West End-of-Life Care Network will: 1. Help to establish a coordinated approach to evaluation across the Network.2. Design a Performance Evaluation Framework for the Network and the end-of-life care

system in the South West, drawing on available standards and the Network’s strategic plan.3. Suggest research and evaluation priorities and identify resources needed to address them.4. Help to build and maintain support for key research and evaluation projects in the South

West.5. Oversee projects once they have received the support of the Network Steering Committee

and participating Network members.

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6. Review project results. Make reports to the Network Steering Committee and its stakeholders as necessary.

7. Coordinate research and evaluation activities with other end-of-life care networks andprovincial bodies (e.g. Cancer Care Ontario).

Membership as of August 2007Hilary Anderson-Halliday, Regional Manager, Decision Support, South West CCACPaul Cavanagh, Director, South West End-of-Life Care Network (chair)Carla Crowther, Client Services Manager, South West CCAC (Grey-Bruce)Lynne Hammond, Client Services Manager (with lead for end-of-life care in Elgin and London-

Middlesex), South West CCACIngrid Harle, Medical Director, Palliative Medicine, South WestCarol Huston, Coordinator, Volunteer Hospice Program, VON (Middlesex County)Nancy Keat, Pain and Symptom Management Consultant for London-MiddlesexBeth Lambie, Director, Erie - St. Clair End-of-Life Care NetworkCarol McWilliam, Faculty of Nursing, The University of Western OntarioKaren Palmer, Provincial Palliative Care Integration Project Regional Improvement CoordinatorJudy White, Pain and Symptom Management Consultant for Huron-Perth

South West End-of-Life Care Network Communication Strategy Committee (ad hoc)This ad hoc committee of the South West End-of-Life Care Network convened in Fall 2006 andWinter 2007 to identify the key communication tools to be used by the Network and to de-velop a user’s guide for the video, Dying in the Home: One Family’s Experience. The committeedisbanded after it completed its tasks.

Membership Fall 2006Paul Cavanagh, Director, South West End-of-Life Care Network (chair)Ray Dilling, Executive Director, Hospice of LondonJulie Johnston, Coordinator, Palliative Pain and Symptom Management Consultation ProgramLee Okovita, Director Client Services, Elgin CCACMichael Robbins, Segue CommunicationsNancy Schaff, Case Manager, Huron-Perth CCACJackie Wells, Manager Community Services, VON (Middlesex County)

Local end-of-life care planning committeesIn late 2004, interagency committees were formed in Grey-Bruce, Huron-Perth, London-Middlesex, Oxford, and Elgin to develop local end-of-life care service delivery plans that weresubmitted to the Ministry of Health and Long-Term Care in Spring 2005. Funding was receivedfrom the Ministry in October 2005 that allowed many but not all of the elements of these plansto be implemented.

The focus of the local end-of-life care committees remains the implementation of the localplans and the management of interagency relationships at the local level. Representativesfrom each of the local committees sit on various South West End-of-Life Care Network committees, including the Network Steering Committee.

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References

1 Canadian Hospice Palliative Care Association. (2002). A Model to Guide Hospice Palliative Care:Based on National Principles and Norms of Practice, p. 17.

2 Emanuel LL, von Gunten CF, Ferris FD (eds.) (1999). The Education for Physicians on End-of-LifeCare (EPEC) Curriculum. The EPEC Project. The Robert Wood Johnson Foundation.

3 Emanuel LL, von Gunten CF, Ferris FD (eds.) (1999). The Education for Physicians on End-of-LifeCare (EPEC) Curriculum. The EPEC Project. The Robert Wood Johnson Foundation.

4 Statistics Canada. (2004). Population Projections for Canada, Provinces and Territories – 2000-2026, Catalogue #91-520, p. 110.

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10 Teno JM et al. (2004). Family perspectives on end-of-life care at the last place of care. Journal of theAmerican Medical Association, 291: pp. 88-93.

11 Christakis NA & Iwashyna TJ (2003). The health impact of health care on families: a matched cohortstudy of hospice use by decedents and mortality outcomes in surviving, widowed spouses. Social Science & Medicine, 57: pp. 465-475.

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14 Higginson I. et al. (2003). Is there evidence that palliative care teams alter end-of-life experiences ofpatients and their caregivers? Journal of Pain and Symptom Management, 25: pp. 150-168.

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15 Higginson I. et al. (2002). Do hospital-based palliative teams improve care for patients or familiesat the end of life? Journal of Pain and Symptom Management, 25: pp. 96-106.

16 Dowdy, MD et al. (1998). A study of proactive ethics consultation for critically and terminally ill patients with extended lengths of stay. Critical Care Medicine. 26: p. 2.

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18 Schockett E, Teno J, Miller S, Stuart B. (2005). Late referral to hospice and bereaved family memberperception of quality of end-of-life care. Journal of Pain and Symptom Management, 30: pp. 400-407.

19 Klejman M. (Aug 22, 2006). Revised Policy for Pain and Symptom management (24A) Services –now titled Palliative Pain and Symptom Management Consultation. Letter to executive directorsof community support service agencies.

20 Cancer Care Ontario. (downloaded Sep 12, 2007). Provincial Palliative Care Integration Project - Resource Manual - Collaborative Care Plans.

21 Balboni TA, Vanderwerker LC, Block SD, Paulk ME, Lathan CS, Peteet JR, Prigerson, HG. (2007). Religiousness and spiritual support among advanced cancer patients and associations with end of lifetreatment preferences and quality of life. Journal of Clinical Oncology, 25: pp. 555-560.

22 VandeCreek L, Burton, L. (eds.) (downloaded Sep 13, 2007). Professional Chaplaincy: Its Role andImportance in Healthcare. Canadian Association of Pastoral Practice and Education.

23 Nusink L. (May 3, 2006). Revised Policy for Volunteer Hospice Services. Letter to executive directors of community support service agencies with volunteer hospice service.

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