Cancer Strategy / Strategic priorities / Priority 5

Priority 5: Deliver information and supports for people living with cancer, families and caregivers

People with cancer and their families experience many challenges that make their cancer experience more difficult.

Action 1

Integrate the full spectrum of information and support services to ensure people are fully supported throughout the cancer experience

Improving availability of information and support
Improving access to shared medical records

Action 2

Address the limited and unequal access to palliative and end-of-life care across Canada

Improving access to quality end-of-life care
Improving access to culturally safe palliative care

Action 3

Support children, adolescents and young adults at key transition points in their unique cancer journeys

Improving care for adolescents and young adults with cancer
Improving transitions for adolescents and young adults with cancer

Select jurisdiction to see progress:

Improving availability of information and support

Each province and territory has provided their own content and measures this indicator differently. Because of these differences, data cannot be compared across jurisdictions. The data tables and technical appendix are available upon request. References for Canada-wide information are online.

Why we are focusing on patients getting the information they need
Person with anxiety

Being diagnosed with cancer can be an overwhelming experience. Fatigue, pain, anxiety and depression are common, and often people don’t receive the support they need.
Seven in 10 people report having anxieties and fears upon diagnosis¹ and many continue to experience physical and practical challenges after completing treatment.²
People with cancer need understandable information about their cancer and treatment options. They also need support services that focus on the concerns that they and their families face during and after treatment.³
Patient navigators and support from health and community care providers—and from the health system in general—are crucial to help people have the best possible experience throughout their cancer journey.

What we want to achieve

Person-centred care for people with cancer, survivors and their families so they are treated as individuals and receive information and supportive services that reflect their needs, values, contexts, cultures and languages
Health and community care providers trained in a person-centred approach

What that would mean for people in Canada

All patients with cancer, survivors and their families and caregivers experience improved access to cancer information, resources and supports they need for their cancer journey
Reduced anxiety, better health outcomes and a better experience for patients and families that are living with and beyond cancer, and overall improved patient satisfaction, quality of life and patient outcomes

Improving access to shared medical records

Why we are focusing on access to information for healthcare professionals
medical records

Most primary care providers (85 per cent)⁴ now use an electronic health record to securely store information about a person’s care. Hospitals and cancer centres use various electronic systems for hospital records, lab and imaging results, and drug records. However, most of these systems do not connect with each other.
People with cancer often have to repeat information as they see different specialists and primary and community healthcare providers. Tests are repeated because the results are not available across different electronic systems.
Healthcare records are not easily shared between provinces and territories. For people seeking treatment across jurisdictions, this creates additional barriers to accessing health records from care providers.

What we want to achieve

Better continuity of care for people living with and beyond cancer
Primary care and cancer specialists share patient information through integrated electronic medical records³
Patients and healthcare providers have easier and secure access to electronic health records

What this would mean for people in Canada

Better coordination of care, improved navigation and smoother transitions for people with cancer and their families as they move between cancer centres and primary care
People with cancer and their families able to access their health records, which improves their overall experience
Healthcare providers able to access timely health information to improve care

Improving availability of information and support

Where we are today

Percentage of cancer patients who reported a positive response related to their informational needs being met during the cancer care journey

Care team explained treatment in an understandable way: AOPSS 2019/20: 98.2% and BCC Survey 2022/23: 95.6% Patient always or usually knew whom to ask for questions related to health problems: AOPSS 2019/20: 87.5% and BCC Survey 2022/23: 89.9% Patient always or usually knew next steps in care plan: AOPSS 2019/20: 86.2% and BCC Survey 2022/23: 81.0%

Data source: AOPPS patient survey and provincial cancer agencies and programs
Notes:

The 2019 data was collected through the AOPPS patient survey.
In 2022/23, BC Cancer launched its own patient experience surveys within the regional cancer centres through project efforts to implement team-based care.
The COVID-19 pandemic may have affected service provision.

Click here to see all data and data limitations, including any additional stratifications.

Our goal

To ensure every person treated at BC Cancer gets the right information, the right way, at the right time.

Current situation

BC Cancer has implemented a patient education procedure to ensure people with lived experience of cancer care are engaged in the development of education materials and their information needs are being met. New efforts focus on socializing the procedure across BC Cancer to promote clinical adoption.
Provincial lead of patient education role embedded in the Provincial Programs team to support alignment with health literacy best practices.

New efforts

Development of a provincial catalog to track patient education materials. Translation of patient handouts into Traditional and Simplified Chinese and Punjabi.
Co-designing education companion guides with patients that align with tumor group clinical pathways of cancer care.

Indicator:
Percentage of cancer patients who reported a positive response related to their informational needs being met during the cancer care journey

Improving access to shared medical records

Where we are today

Ratio of physicians on-boarded onto CareConnect to the number of unique physicians with privileges in each health authority

0.95 in 2021, and 0.93 in 2023.

Data source: Provincial cancer agencies and programs
Notes:

A ratio close to 1 would be considered a target (i.e., there are similar numbers of physicians onboarded in each health authority as there are physicians with privileges).
Data were provided in aggregate format by provincial or regional health authority. It is possible that some physicians have privileges in two separate health authorities and are thus double counted in either the numerator or denominator.
Includes only physicians with privileges in one of the regional or provincial health authorities. Data excludes any physicians without privileges.
The COVID-19 pandemic may have affected service provision.

Click here to see all data and data limitations, including any additional stratifications.

Our goal

Care providers in British Columbia have access to relevant cancer treatment and medical history information to support patient care.
Greater integration of electronic medical records across healthcare providers to improve quality of care.

Current situation

BC’s eHealth viewer (CareConnect) allows patients’ health information to be shared between healthcare providers throughout the province.
Cancer centre patient records from BC Cancer’s six regional cancer centres have been onboarded into BC’s eHealth viewer.
Digital health teams within regional health authorities reported anecdotally that nearly all physicians with privileges in their organizations are onboarded to CareConnect as part of their onboarding.

New efforts

Implementation of a new Cerner electronic medical record (EMR) across some health organizations in British Columbia has commenced. The first cancer centre in the province (BC Cancer Vancouver Cancer Centre) went live on Cerner in June 2021.Since then, two additional cancer centres have been onboarded to this new EMR (BC Cancer Prince George, BC Cancer Abbotsford). The remaining three provincial cancer centres are scheduled to onboard to Cerner over the coming two-year period.
A new cancer screening information system is being implemented. Cervix, breast and lung screening are now live. All four cancer screening programs are now live on this system.

Indicator:

Ratio of physicians on-boarded onto CareConnect to the number of unique physicians with privileges in each health authority

Improving availability of information and support

Where we are today

Percentage of patients reporting that they received enough information about treatment, possible changes in their emotions, physical appearance and energy/fatigue levels, or referral to a care provider who could help with anxieties and fears

Data source: Ambulatory Oncology Patient Satisfaction Survey (AOPSS)
Note: The COVID-19 pandemic may have affected service provision.
Click here to see all data and data limitations, including any additional stratifications.

Our goal

Ensure patient and family educational materials and information are accessible to all people receiving care in Alberta.
Ensure this information helps people with cancer and their families to understand their disease and care and supports them in their decision-making and self-management.

Current situation

Patient and family information is available to support decision-making across the cancer journey from pre-diagnosis through survivorship and living with advanced cancer. Information is available in print and digitally, along with videos and digital classes on a range of subjects covering treatment and well-being. Classes are available on Zoom across the province.
Specific resources are also available for Indigenous people experiencing cancer.

New efforts

An assessment will be done of the information available to help people navigate the cancer system, including the feasibility of providing information in an inclusive way.

Indicator:

Percentage of patients reporting that they received enough information about possible changes in their emotions, physical appearance and energy/fatigue levels
Percentage of patients reporting that they received enough information about therapies for treating cancer
Percentage of patients reporting that they were referred to a care provider who could help with anxieties and fears

Improving access to shared medical records

Where we are today

Indicator data not available at this time.

Our goal

10% of Cancer Care Alberta patient records have at least one access by primary care providers by 2022, with a goal of 20% by the second year, and 30% by the end of the third year.

Current situation

Connect Care is currently being implemented in a staged roll-out with Cancer Care Alberta scheduled for November 2022 or Spring 2023 (date TBD).
Currently, over 80,000 Albertans have access to their patient portal, MyAHS Connect, depending on their location and the status of Connect Care implementation.

New efforts

Connect Care is the new provincial electronic medical record in Alberta. It includes clinical documentation and provides access to a patient and a provider portal.
The patient portal will allow patients to see their medical records and communicate with their healthcare providers. This would include pre-clinic questionnaires and assessment.
The provider portal will provide non-AHS healthcare providers with access to patient information for people with cancer, including treatment information, discharge summaries, test results and more.
Cancer Care Alberta has a goal of enrolling 30% of oncology patients for MyAHS Connect the first year post launch, 40% in the second year, and 50% in the third year.

Indicator:

Indicator data not available at this time.

Improving availability of information and support

Where we are today

Percentage of cancer patients who reported that they were given enough information about their cancer therapy and potential impacts of their cancer and/or treatment
Appearance 57%. Emotions 34%. Energy/Fatigue 47%. Therapy 60%.

Data source: AOPSS Survey (2016)
Click here to see all data and data limitations, including any additional stratifications.

Our goal

Coming soon.

Current situation

People with cancer meet with care providers such as oncologist and allied health professionals to receive information regarding their cancer, treatment and supportive services.

New efforts

Several new initiatives are being implemented to improve knowledge about cancer, treatment and supportive services among people with cancer and their families.
- Disease site-specific clinics will improve coordination of care and communication about cancer/treatment from multiple care providers (oncologists, nurses, social workers, dieticians, pharmacists).
- Early palliative integrated care will improve communication with people with cancer and their families regarding palliative diagnosis, treatment options and supportive care options in outpatient and community care settings.
- Planning is underway to make Open Clinical Documents (select physician notes) available to patients in 2023 through the patient portal (MySaskHealthRecord) which will provide them with information regarding their appointment with the oncologist and support them in managing their own health care.
The Saskatchewan Cancer Agency will be conducting the Ambulatory Oncology Patient Satisfaction Survey (AOPSS) in 2023.  AOPSS is a standardized instrument to assess the overall cancer patient experience.  Aggregated results will be used to inform program evaluation and planning.

Indicator:

Percentage of cancer patients who reported that they were given enough information about their cancer therapy and potential impacts of their cancer and/or treatment

Improving access to shared medical records

Where we are today

Percentage of healthcare professionals with direct access to cancer patient information
2019: 27.1%. 2020: 40.7%.

Data source: Provincial cancer agencies and programs
Note: The COVID-19 pandemic may have affected service provision.
Click here to see all data and data limitations, including any additional stratifications.

Our goal

Improve healthcare provider access to cancer patients’ medical records.

Current situation

Information regarding a patient’s medical record (new patient notes, review/follow-up notes, urgent history notes and discharge notes) are uploaded in real time to eHR Viewer, a secure website that allows authorized healthcare providers to access patient information, no matter where a patient presents for care.
Various practitioners, such as physicians, emergency medical technicians, nurses, dentists, etc. can apply to have access to eHR Viewer.
The province continues to educate healthcare providers that cancer medical records are available on eHR Viewer.

New efforts

Coming soon.

Indicator:

Percentage of healthcare professionals with direct access to cancer patient information

Improving availability of information and support

Where we are today

Percentage of respondents to the Ambulatory Oncology Patient Satisfaction Survey who reported a positive response to questions related to whether they received enough information across five themes

Referral: 35.4% in 2021, and 51% in 2022. Emotions: 73% in 2021, and 73.3% in 2022. Appearance: 88% in 2021, and 86.5% in 2022. Energy and fatigue: 89.5% in 2021, and 87.9 in 2022. Treatment: 96.2% in 2021, and 94.1% in 2022.

Data source: Ambulatory Oncology Patient Satisfaction Survey
Note:

The COVID-19 pandemic may have affected service provision.
The themes reflect positive responses to the following AOPSS questions:
- Referral: “When you were first told of your illness, were you referred to a care provider who could help you with your anxieties and fears?”
- Emotions: “Did you get enough information about possible changes in your emotions?”
- Energy/Fatigue: “Did you get enough information about possible changes in your energy/fatigue level?”
- Appearance: “Did you get enough information about possible changes to your physical appearance?”
- Treatment: “Were you given enough information about therapies for treating cancer?”

Click here to see all data and data limitations, including any additional stratifications.

Our goal

Improve the patient experience by increasing patient access to information throughout the cancer-control continuum as outlined by the 2020 Roadmap to Cancer Control for Manitoba.

Current situation

CancerCare Manitoba’s (CCMB) Navigation Services are freely available to all cancer patients and their families in Manitoba.
Patients and their family members can contact Navigation Services directly or be referred by any healthcare professional.
Navigation teams consist of nurse navigators, psychosocial oncology clinicians, and community engagement liaisons and are available within each regional cancer program.
Navigation Services seeks to address and mitigate the individual challenges patients face, including those related to diverse socio-economic and cultural backgrounds and diverse identities.
CCMB’s Moving Forward After Cancer Program is made available during appointments with the oncology team in person and online, and provides information and resources for cancer patients after completion of treatment.

New efforts

As of 2022, CCMB has changed the frequency of the Ambulatory Oncology Patient Satisfaction Survey (AOPSS) from once every 3-4 years, to twice per year.
CCMB is currently implementing a new patient portal called Noona which would allow the collection of patient symptoms and various patient experience metrics. The portal would engage patients with features that allow real-time communication with their care teams and provide care teams with data to help them provide quality care over the course of a patient’s journey.

Indicator:

Percentage of respondents to the Ambulatory Oncology Patient Satisfaction Survey who reported a positive response to questions related to whether they received enough information across five themes

Improving access to shared medical records

Where we are today

Percent of healthcare professionals* who currently have direct access to cancer patient information (i.e., are active users) within CancerCare Manitoba’s (CCMB) electronic medical record (ARIA)

39.2% in 2019 52.3% in 2020

Data source: Provincial cancer agencies and programs
Note:

The COVID-19 pandemic may have affected service provision.
*Here, healthcare professionals include the following seven physician classifications: Family Practitioner, General Practitioner, Physician, Palliative Care Physician, Emergency Medicine Physician, Family Physician in Oncology, and Community Cancer Program Physician.

Click here to see all data and data limitations, including any additional stratifications.

Our goal

Invest in technologies to facilitate enhanced communication and improved sharing between the many healthcare professionals involved in providing cancer care.

Current situation

Opportunities for access to ARIA are available for primary care providers, including surgeons, family physicians and emergency departments.

New efforts

CCMB is currently implementing a new patient portal called Noona which would allow the collection of patient symptoms and various patient experience metrics. The portal would engage patients with features that allow real-time communication with their care teams and provide care teams with data to help them provide quality care over the course of a patient’s journey.
CCMB provides a physical and electronic copy of a “Moving Forward After Cancer Package.”

Indicator:

Percent of healthcare professionals* who currently have direct access to cancer patient information (i.e., are active users) within CancerCare Manitoba’s (CCMB) electronic medical record (ARIA)

Improving access to shared medical records

Where we are today

Percentage of clinicians with access to clinical viewer in ON with treatment data consolidated (including cancer) who are active users of the clinical viewer
2020 start of pandemic: 51.4%, 2021 pandemic era: 36.8% and 2023: 28.3%

Our goal

Under evaluation.

Current situation

Ontario Health provides an electronic health record system to connect healthcare providers across the province.
As the demand for clinical viewers of electronic health records grows every year, current efforts in Ontario include finding ways to enable access by authorized users through policy measures in partnership with the Ministry of Health.
Areas such as home and community care and emergency services are demanding greater access, while the province continues its support of its partners in acute and primary care.
Despite a decrease in the percentage of authorized users who are active users from 2020 to 2023, there is a continued increase in active users and an even larger increase in authorized users in 2023 which results in a decreasing overall percentage.
Access to digital health information through clinical viewers is only one method through which health care providers access this data. Another popular method is direct integration of digital patient health data to point of care systems.

New efforts

Ontario Health works in tandem with the Ministry’s Digital Health Division to enable access as described in the province’s “Digital First for Health Strategy.” There is currently work being done to standardize definitions of active and authorized user between the different types of clinical viewers available in Ontario.

Indicator:

Percentage of clinicians with access to clinical viewer with treatment data consolidated (including cancer) who are active users of the clinical viewer

Improving availability of information and support

Where we are today

Percentage of cancer patients who reported that they were given enough information about their cancer, its treatments, and the outcome of their cancer in 2020

My cancer 97.7%. My treatment plan 96.5%. The probable outcome for my cancer 86.2%. Whether the treatment is working 86.2%.

Data source: Nova Scotia Health Cancer Care Program 2020 Patient Satisfaction Survey
Note: The COVID-19 pandemic may have affected service provision.
Click here to see all data and data limitations, including any additional stratifications.

Our goal

Ensure people with cancer across the province have access to the information and resources they need at the appropriate time
Ensure the Cancer Care Program has the appropriate front line and psychosocial oncology resources to support people with cancer across the province

Current situation

Cancer patient navigators are available in rural and remote communities.
Psychosocial oncology teams provide care at the two cancer centres (Halifax and Sydney).
Psychosocial oncology specialists provide limited care in some rural and remote communities.
Across the province, people with cancer have access to virtual patient education sessions, including patient orientation, living beyond cancer and symptom management.
Front line staff and psychosocial oncology specialists are offered support to increase their knowledge and skills in providing care to people with cancer experiencing cancer-related distress (i.e., IPODE course, PSO Community of Practice, provincial distress screening/management education).

New efforts

Engagement of and consultation with cancer patient/family advisors is being increased.
A survey has been conducted to better understand the preferences of people with cancer and their families in accessing information and services.
Focus groups are being held with the African Nova Scotian and our First Nations communities to understand their needs and preferences in accessing information and services.
Work is underway to increase provision of virtual care both individually and in group format.
Ongoing advocacy for increased psychosocial oncology resources has resulted in new positions in some rural and remote communities across the province. Most cancer patients will have access to social workers and drug access navigators by the end of 2023.
A provincial psychosocial oncology community of practice has been established.
Work is underway to establish regular reporting to clinical teams on standards of care in psychosocial oncology, i.e., distress screening.
There is increased sensitivity to the need for programming that is provincial in nature.

Indicator:

Percentage of cancer patients who reported that they were given enough information about their cancer, its treatments, and the outcome of their cancer in 2020

Improving access to shared medical records

Where we are today

Year 1: Provincial Scheduling, Data and Analytics, Patient Portal Enrollment. Year 2: Application Upgrade, Results Interfaces, Systemic Therapy Management, CPOE. Year 3: Provider Mobile Access, Radiation Oncology Optimization. Year 4: Optimize Processes and Functionality. Year 5: Adapt, Improve, Grow.

Notes:

Phased implementation for systemic therapy management and CPOE.
Expansion of patient portal functionality over multiple years.
Future integration with provincial one person one record application.

Our goal

The Oncology Transformation Project is a five-year project to design and implement a single integrated oncology information system in Nova Scotia. The project will leverage the existing application used in Radiation Oncology for appointment scheduling, systemic therapy management, Computerized Provider Order Entry (CPOE), patient engagement portal and mobile access for providers.

Current situation

Year 1 Phase 1:
- Replace multiple patient appointment systems with a single provincial solution
- Integrated Data and Analytics platform
- Patient engagement platform enrollment allowing patients to view appointments
Year 1 Phase 2:
- Application upgrade and installation of systemic therapy management
- Results interfaces
- Phased implementation of systemic therapy management, CPOE, electronic clinical documentation
Future:
- Expand functionality of patient engagement platform
- Mobile access for providers
- Optimize processes and functionality
- Surgical oncology
- Integration with One Person One Record

New efforts

Governance structure
Provincially standardized workflows
Clinical Informatics and Quality Leads
Subject matter expert led working groups
System Performance committee for data and analytics
Patient engagement

Improving availability of information and support

Where we are today

Percentage of patients who feel staff told them about other services and supports available in the community

77.8% in 2020 and 67.9% in 2022.

Data source: PEI Ambulatory Care Patient Satisfaction Survey
Note: The COVID-19 pandemic may have affected service provision.
Click here to see all data and data limitations, including any additional stratifications.

Our goal

Fully implement the Cancer Care Plan Framework and monitor for success or improvement.

Current situation

Passport to Care was developed with input from people with cancer and healthcare providers. The resource provides a person’s care plan, appointments and resources, and is provided to all new patients seen at the PEI Cancer Treatment Centre (PEICTC).
An orientation to PEICTC is offered to all new patients and caregivers.
Information for people with cancer and families is available through the province’s cancer care website.

New efforts

Work on the Cancer Care Plan Framework has been re-engaged, particularly in the area of discharge planning.
Work is ongoing to increase support for people with cancer during their transition from active treatment and in survivorship through the Cancer Patient Navigation Program.

Indicator:

Percentage of patients who feel staff told them about other services and supports available in the community

Improving access to shared medical records

Where we are today

Percentage of healthcare professionals with direct access to cancer patient information

Indicator data not available at this time.

Our goal

Implement a provincial integrated patient electronic medical record (EMR) that supports a collaborative approach to care and better communication between people with cancer and all of their healthcare providers.

Current situation

The Government of PEI has implemented innovative health information technology to modernize how they collect, share and use patient information.
The TELUS Collaborative Health Record (CHR) supports health professionals to safely, efficiently, and effectively access and share patient information. Implementing CHR started in 2021 and continues to roll out with community-based providers with a supportive team to train, prepare and support this process.
As of February 2024, 186 providers (doctors and nurse practitioners) across primary care and specialty services were using the solution. About 90% of primary care providers have access to the CHR.

New efforts

Completion of the provincial roll-out to primary care and specialist providers is anticipated in 2024.

Indicator:

Percentage of healthcare professionals with direct access to cancer patient information

Improving availability of information and support

Where we are today

Percentage of cancer patients who reported that they were given enough information about their cancer, its treatments, and the outcome of their cancer
Instructions to care for yourself: 89%. Contact information for questions: 93.5%. Access to spiritual/religious support: 41.5%. Access emotional or mental health support 59%.

Data source: Provincial cancer agencies and programs
Click here to see all data and data limitations, including any additional stratifications.

Our goal

Ensure cancer patients have access to available information at any stage of their cancer journey and are aware of how to access it.
The Cancer Care Program ensures their patients are aware they can access mental health and spiritual support services across Newfoundland and Labrador.

Current situation

During cancer treatments, nursing staff assesses patients at each point of contact and evaluates the need for support and provides referral options.
The Cancer Care Program’s mental health clinicians are located in western and eastern Newfoundland. However, virtual appointments are offered to any patient regardless of their home location in the province.
Cancer Transitions: Moving Beyond Treatment is a seven-week program facilitated by mental health clinicians and provides education, support and empowerment for life after treatment. This is available to patients up to two years post-treatment and is offered virtually.

New efforts

The Cancer Care Program’s mental health clinicians will be directly supporting Hematology Department. Mental health clinicians will be more accessible to all cancer types and would increase the services that will be offered to hematological cancer patients.

Indicator:

Percentage of cancer patients who reported that they were given enough information about their cancer, its treatments, and the outcome of their cancer

Improving access to shared medical records

Where we are today

Percentage of family physicians in NL who have logged into HEALTHe NL viewer at least 50 times (among family physicians that have access to HEALTHe NL)
84.9% in 2019. 83.8% in 2020.

Our goal

Not available at this time.

Current situation

eHealth is a provincial initiative that allows health information to be accessed by healthcare professionals throughout the province, not just within a particular region.

New efforts

Work is underway to add prompts to the province’s electronic medical record system that will alert healthcare providers when their patients are due for cancer screening.

Indicator:

Percentage of family physicians in NL who have logged into HEALTHe NL viewer at least 50 times (among family physicians that have access to HEALTHe NL)

Select jurisdiction to see progress:

Improving access to quality end-of-life care

Why we are focusing on access to quality end-of-life care^1-5
end of life

Palliative care improves the quality of life of people with cancer and their families by addressing symptoms such as fatigue, pain, anxiety and depression throughout their cancer journey. End-of-life care brings that same focus to the care needs of someone who is dying.
86 per cent of Canadians believe palliative and end-of-life care should be provided at home as much as possible.⁶
While many people with cancer would prefer to spend their final days at home or in a hospice, an estimated 45 per cent die in acute care hospitals.
Some First Nations, Inuit and Métis are comforted by traditional and spiritual practices around dying.
Supports for end-of-life care are also critical for the many people in Canada who provide care to dying family members. Resources such as palliative care or hospice care can help them care for their loved during this difficult experience.

What we want to achieve

People who would benefit from palliative care identified early in their cancer journey
Patients and families receive end-of-life care in the setting they prefer
Caregivers receive the supports they need so they feel prepared to manage and cope with the care of their loved one at the end of life
Increased access to end-of-life services for underserved populations, including First Nations, Inuit and Métis, by ensuring services are available in different languages and for different cultural contexts

What this would mean for people in Canada

Better quality of life for people with cancer and their families throughout their cancer journey— right to the very end
Fewer people with cancer having to leave their community to receive care to manage their symptoms during their last weeks of life
More people with cancer able to die at home if they choose

Improving access to culturally safe palliative care

Why we are focusing on access to culturally safe palliative care^3,7-9
culturally safe care

Palliative care improves the quality of life of people with cancer and their families, by addressing symptoms such as fatigue, pain, anxiety/depression throughout their cancer journey. Palliative care puts in place the psychological, spiritual and practical supports to address a person’s needs.¹⁰
Most people in Canada could benefit from palliative and end-of-life care, but 70 per cent of those in need do not receive it.¹¹
Culturally safe palliative care services are responsive to the needs of First Nations, Inuit and Métis. They acknowledge the importance of embracing the traditions and values of Indigenous people with cancer, families and communities and supporting Indigenous self-determination.¹²
Advance care planning allows people with cancer and their families to discuss the type of care they wish to have with their healthcare team and to learn about palliative and end-of-life care supports such as hospices and home care.
Fewer than half of Canadians have talked about palliative or end-of-life care with family members or friends, and only nine percent discussed advance care planning with their healthcare providers.⁹
With the COVID-19 pandemic, skills to facilitate appropriate conversations about goals of care have become even more critical, given the potential severity of illness and high mortality rate from COVID-19 among vulnerable populations such as advanced stage cancer patients. This has sparked increased interest from multidisciplinary healthcare providers in learning more about serious illness conversations, including advance care planning.
Keeping patients out of hospital has taken on added significance during the COVID-19 pandemic. In response, Ontario and British Columbia have expanded their paramedic palliative care training programs and St. John’s, Newfoundland has added additional palliative care-trained paramedics to its staffing rotation. Paramedics trained in palliative care support people who are receiving palliative and end-of-life care to remain at home.

What we want to achieve

Healthcare providers have the training and competencies to have advance care planning conversations with people with cancer and their families in a way that is culturally safe; health professionals are able to provide basic palliative care and know when a referral to formal palliative care is needed.
People with cancer and their families have the information and tools they need to participate in conversations about advance care planning and to communicate their preferences to healthcare providers
Improved collaboration between oncology and palliative care teams to better meet the needs of people with cancer and their families
Care supported closer to home to allow for the involvement of family and integration of cultural practices¹³
Advance care planning conversations introduced early, so that people with cancer can begin having these discussions with their future substitute decision-makers while they are healthy, and not in crisis situations
Goals of care discussions take place when treatment or care is being considered; the person with cancer is consulted when a decision or consent is required

What this would mean for people in Canada

People with cancer and their families have the tools and supports they need to express their values and preferences around palliative and end-of-life care
Healthcare providers know what care and support is important for a person with cancer and their family and their wishes around end-of-life care
People receive palliative and end-of-life care that reflects their values and preferences, giving them much needed physical, emotional, mental and spiritual support during their cancer experience

Improving access to quality end-of-life care

Where we are today

Cumulative length of stay for cancer patients who were in or admitted to an acute care hospital 30 days prior to death across AB for fiscal years 2015, 2017 and 2019

2015: Median is 16 days. 90th percentile is 52 days. 2017: Median is 15 days. 90th percentile is 50 days. 2019: Median is 15 days. 90th percentile is 48 days.

Data source: Canadian Institute for Health Information (CIHI), Discharge Abstract Database (DAD).
Click here to see all data and data limitations, including any additional stratifications.

Our goal

Ensure people with cancer, caregivers and families have resources to plan and prepare for quality end-of-life care that is close to home as much as possible.
Ensure people with cancer, caregivers and families get care in the appropriate setting of choice (e.g., hospice, home, hospital) in the last weeks to days of life.

Current situation

Most cancer centres have palliative care and supportive care clinics.
Palliative and end-of-life curricula is included in education for doctors, nurses and other health professionals.
All regions have integrated palliative & end of life care programs that offer home care, palliative consult teams (community, hospital) and hospices.

New efforts

Public awareness initiatives will be developed, so people understand the end-of-life services available to support the last days and hours of a patient’s life.
Metrics will be developed to measure access to hospice and community-based home care services by people with cancer at the end of life.
Initiatives will be developed for healthcare providers, so they understand the palliative and end-of-life services available to support their patients’ last days and hours of life.
Alberta is implementing a tool to screen people with cancer for symptoms like fatigue, pain, anxiety and depression in order to provide better supports.
Further work will be done to integrate the use of patient reported outcomes (questionnaires that gather information on symptoms like pain, fatigue and anxiety) to improve patient care.
A model of early palliative care that is more integrated with other services is being implemented, so patient symptoms are better managed.
Patients living with advanced cancer will be screened early, so that palliative care and discussions of advance care planning can be initiated in a timely manner.
A shared care model for oncologists, family physicians and palliative care teams that provides care for people living with advanced cancer is being developed, implemented and evaluated.
Programs are being developed to support the health and well-being of caregivers.
Indigenous liaisons for people with cancer will be introduced.

Indicator:

Cumulative length of stay for cancer patients who were in or admitted to an acute care hospital 30 days prior to death across AB

Improving access to culturally safe palliative care

Where we are today
Indicator data not available at this time.

Our goal

Increase timely discussions regarding advance care planning and goals of care, especially for patients living with advanced cancer.
Improve access to quality palliative care early in the course of cancer treatment and as close to home as possible.
Increase the ability of the workforce to provide psychosocial support, making special efforts to recruit and train individuals from different ethnic and cultural groups.
Engage cultural and community organizations as partners in developing culturally appropriate support services.

Current situation

Alberta is working on a palliative care strategy for cancer care to support an early palliative care approach and seamless transitions of care for patients receiving palliative care.
Alberta has a provincial policy on advance care planning that standardizes processes in all cancer clinics, including use of an Advance Care Planning Tracking Record to document conversations and Goals of Care Designation (GCD) orders to communicate a patient’s goals of care.
There are much lower rates of GCD orders and tracking record use in the cancer centre electronic medical record (EMR) compared to rates in acute care or long-term care.

New efforts

The new provincial EMR (Connect Care) will allow GCD orders created in one setting to remain active in another setting. For example, a GCD determined in acute care will be evident in the patient chart in a cancer outpatient clinic and vice versa.
A patient portal will allow patients to upload their personal directive and other advance care planning (ACP) documents to their electronic medical record so their healthcare team knows and can follow their wishes.
The Serious Illness Care program has been piloted in cancer clinics as a way to prioritize and enhance the quality of communication to elicit the patient’s wishes and values.

Indicator proxy:

Patients identified for palliative care who have advanced care planning/goals of care discussions initiated

Improving access to quality end-of-life care

Where are we today

Cumulative length of stay for cancer patients who were in or admitted to an acute care hospital 30 days prior to death across SK for fiscal years 2015, 2017, and 2019
Median in 2015 was 17 days, and in 2017 was 15 days, and in 2019 was 15 days. 90th percentile in 2015 was 46 days, and in 2017 was 40 days, and in 2019 was 45 days.

Data sources: Canadian Institute for Health Information (CIHI), Discharge Abstract Database (DAD)
Notes: During 2015-2019 palliative care patients were admitted to acute care hospitals, who may be included in calculated indicator.
Click here to see all data and data limitations, including any additional stratifications.

Our goal

Improve accessibility of palliative care services to provide optimal end-of-life care for all across the province.

Current situation

Cancer centres have interdisciplinary palliative care and symptom management clinics.
Telehealth and virtual care (phone and in-home video conferencing) is used to make high quality, interdisciplinary palliative care services available to patients in rural and remote areas.
Paramedics are being trained to deliver palliative and end-of-life care in patients’ homes, allowing patients to remain at home whenever possible.

New efforts

Earlier palliative integrated care is a new program which focuses on improving access to and the quality of palliative care through staff education and process improvements.
Staff training in Serious Illness Conversation and Learning Essential Approaches to Palliative Care support earlier, better conversations regarding life-limiting illness and support care in alignment with patient goals, often closer to or even in the home.
Work is under way to Increase access to virtual care and telehealth network for palliative care consultations. SCA successfully piloted a virtual in-home multi-disciplinary palliative care consultation in collaboration with community palliative home care team, reducing travel burden on patient and family and enhancing continuity of care.

Indicator:

Cumulative length of stay for cancer patients who were in or admitted to an acute care hospital 30 days prior to death across SK for fiscal years 2015, 2017, and 2019

Improving access to culturally safe palliative care

Where we are today

Indicator data not available at this time.

Our goal

Ensure early integration of palliative care in all settings.
Train healthcare providers in palliative care.

Current situation

Coming soon.

New efforts

Training paramedics to deliver palliative and end-of-life care in patients’ homes, allowing patients to remain at home whenever possible.
Developing a Culturally Responsive Organizational Strategy, guided by First Nations and Métis community partners and Knowledge Keepers, with the goal of providing culturally appropriate and safe care.
Collaborated on the development of an integrated Indigenous Advance Care Plan resource, Coming Full Circle.

Indicator:

Indicator data not available at this time.

Improving access to quality end-of-life care

Where we are today

Cumulative length of stay for cancer patients who were in or admitted to an acute care hospital 30 days prior to death in Manitoba, by fiscal year

Median: In 2015 was 18 days. In 2017 was 18 days. In 2019 was 18 days. 90th percentile: In 2015 was 60 days. In 2017 was 58 days. In 2019 was 58 days.

Data source: Canadian Institute for Health Information (CIHI), Discharge Abstract Database (DAD)
Note: In Manitoba, some of the palliative care programs are in acute care hospitals but are not distinguished. Therefore, it may seem like more people have died in acute care hospitals, but many of these deaths are in palliative care units.
Click here to see all data and data limitations, including any additional stratifications.

Our goal

Improve access to palliative care services to provide optimal end-of-life care.
Continue to improve on the patient experience by increasing engagement of primary care providers and patient access to information throughout the cancer-control continuum (as outlined in the 2020 Roadmap to Cancer Control for Manitoba).

Current situation

CancerCare Manitoba (CCMB):

CCMB has a palliative care referral process in place for cancer patients and their family/friends/caregivers. The Changing Focus: Living with Advanced Cancer initiative at CCMB has a four-part follow-up care plan specifically tailored to individuals living with advanced cancer. This plan is made available during transitional appointments and through the CCMB website. The care plan discusses a variety of topics, including symptom management, emotional and practical aspects of care, and available supports for both the patient and their family/caregivers.
Patient and Family Support Services provides monthly patient and family education sessions about living with advanced cancer.
CCMB clinicians are encouraged to discuss goals of care and advance care planning with patients with late-stage cancer, which provides opportunities to review and update ongoing treatment plans. The latter is recorded via CCMB's electronic cancer record system (ARIA).

Manitoba:

Palliative care is administered separately within each regional health authority.
The Palliative Care Drug Access Program is provided by Manitoba Health and covers the cost of eligible prescription drugs for individuals registered in a palliative care program within their region.
Palliative Manitoba (PM) is a registered charity with a focus on bereavement support. PM maintains contact with region-specific palliative care programs on a continuing basis and shares outreach and education opportunities.
Medical Assistance in Dying (MAiD) is available to patients with grievous and irremediable medical conditions who meet specific criteria.

New efforts

CancerCare Manitoba (CCMB):

CCMB’s Pain and Symptom Management Team is working to implement improved palliative care within rural/remote areas of Manitoba.

Manitoba:

While Winnipeg has good palliative care services, there is significant inequity in other areas of Manitoba. To address this, Manitoba’s Clinical and Preventive Services Plan outlines initiatives to improve provincial standards/oversight and coordination/centralization of resources to ensure reliable and consistent access to health care for all Manitobans.
The Interlake-Eastern Regional Health Authority (IERHA) is involved in the Paramedics Providing Palliative Care at Home Program (launched in October 2020). The program trains paramedics to deliver palliative and end-of-life care in patients’ homes, allowing patients to remain at home whenever possible. Since October 2020, approximately 90% of the paramedics working in the IERHA have received palliative care-specific training.
A Provincial Systemic Therapy Program has been implemented, with the aim of improving adherence to provincial standards for systemic treatments, including chemotherapy.

Indicator:

Cumulative length of stay for cancer patients who were in or admitted to an acute care hospital 30 days prior to death in Manitoba

Improving access to culturally safe palliative care

Where we are today

Indicator data not available at this time.

Our goal

Improve access to palliative care services to provide optimal end-of-life care.
Improve the patient experience by increasing engagement of primary care providers and patient access to information throughout the cancer-control continuum (as outlined in the 2020 Roadmap to Cancer Control for Manitoba).

Current situation

CancerCare Manitoba (CCMB):

The Changing Focus: Living with Advanced Cancer initiative at CCMB has a four-part follow-up care plan specifically tailored to individuals living with advanced cancer. This plan is made available during transitional appointments and through the CCMB website. The care plan discusses a variety of topics including symptom management, emotional and practical aspects of care, and available supports for both the patient and their family/caregivers.
Patient and Family Support Services provides monthly patient and family education sessions about living with advanced cancer.
CCMB clinicians are encouraged to discuss goals of care and advance care planning with patients with late-stage cancer, which provides opportunities to review and update ongoing treatment plans. The latter is recorded via the CCMB’s electronic cancer record system (ARIA).

Manitoba:

Palliative Manitoba (PM) is a registered charity with a focus on bereavement support. PM maintains contact with region-specific palliative care programs on a continuing basis and shares outreach and education opportunities.

New efforts

CancerCare Manitoba (CCMB):

CCMB’s Pain and Symptom Management Team is working to implement improved palliative care within rural/remote areas of Manitoba.

Manitoba:

While Winnipeg has good palliative care services, there is significant inequity in other areas of Manitoba. To address this, Manitoba’s Clinical and Preventive Services Plan outlines initiatives to improve provincial standards/oversight and coordination/centralization of resources to ensure reliable and consistent access to health care for all Manitobans.

Indicator:

Indicator data not available at this time.

Improving access to culturally safe palliative care

Where we are today
a person's values, wishes, beliefs and goals for their care

Source: Ontario Palliative Care Network

Our goal

Introduce advanced care planning (ACP) conversations early, so that individuals can begin having these discussions with their future substitute decision makers while they are healthy, and not in crisis situations
Ensure goals of care (GOC) discussions are taking place in the context of a current condition when treatment or care is being considered; when a decision is required, the provider needs to obtain consent.

Current situation

Hospice Palliative Care Ontario (HPCO) is the lead for developing and updating materials to support patients, caregivers, substitute decision makers and providers to engage in person-centred decision-making in alignment with Ontario’s legal landscape and the Quality Standard for Palliative Care.
HPCO strives to ensure that Ontarians, the public and health service providers understand the benefits of engaging in ACP, GOC and HCC discussions, and have access to Ontario-compliant resources and tools necessary to effectively engage in person-centred decision making.
HPCO has an extensive and successful Health Care Consent Advance Care Planning Community of Practice that strives to develop health service providers’ practices through a variety of activities, including problem-solving, requests for information, seeking experience, reusing assets, coordination and synergy, discussing developments, documentation, site visits, creation of materials and resources, and mapping knowledge and identifying gaps.

New efforts

Ontario Health (Cancer Care Ontario) recently published and disseminated a Goals of Care Toolkit for Oncology Settings with both provider and patient resources. These tools will support healthcare providers to routinely have, incorporate and document Goals of Care discussions in clinical practice and will help patients prepare for these conversations.
HPCO has been working diligently to execute several deliverables that targeted education, capacity-building and public awareness of Health Care Consent, Advance Care Planning and Goals of Care for various stakeholders.
A new public awareness campaign for Advance Care Planning includes social media, web and print resources. Resources are intended to encourage the public to develop an understanding of what values and wishes can inform future healthcare decisions and encourage them to confirm their Substitute Decision Maker and engage in Advance Care Planning conversations.
HPCO has launched two new websites to support Advance Care Planning and Goals of Care discussions.
- advancecareplanningontario.ca: This website helps Ontarians learn about Advance Care Planning (ACP) so that they understand the process, think about what is important to them and how to involve and prepare their substitute-decision-maker (SDM) for future healthcare decisions.
- pcdm.ca: This website provides all Ontario healthcare practitioners the information and resources they need to:
  - Prepare people and their Substitute Decision-Makers (SDMs) for future decision-making (Advance Care Planning)
  - Support decision-making by engaging people and caregivers in decision-making conversations when needed (Goals of Care Discussions)
The Ontario Palliative Care Network, guided by Ontario’s Provincial Framework on Palliative Care (released December 2021) will advance palliative care priorities to ensure that every Ontarian who needs palliative care—whether they are in their own residence, hospital, a long-term care home, a retirement home, or in another community setting—has better access to high-quality services, including in the final stages of life.

Indicator proxy:

Patients identified for palliative care who have advanced care planning/goals of care discussions initiated

Improving access to quality end-of-life care

Where we are today

Cumulative length of stay for cancer patients who were in or admitted to an acute care hospital 30 days prior to death across NB
Median: In 2015 was 14 days. In 2017 was 14 days. In 2019 was 14 days. 90th percentile: In 2015 48 days. In 2017 52 days. In 2019 49 days.

Data source: Canadian Institute for Health Information (CIHI), Discharge Abstract Database (DAD).
Click here to see all data and data limitations, including any additional stratifications.

Our goal

Increase access to end-of-life care in a community or in home, when appropriate.

Current situation

Work is on-going to implement a community hospice care model that includes services from the Extra -Mural Program and Ambulance New Brunswick (EM/ANB).
NB has three residential hospices providing end-of-life care in a home-like setting (located in Saint John, Fredericton and Moncton). Communities continue working towards the development of residential hospices under the provincial guidance towards the integrated community hospice model.
Paramedics have been trained to support delivering palliative care at home through the Paramedics Providing Palliative Care Project (funded by Canadian Partnership Against Cancer/Canadian Foundation for Healthcare Improvement). The Project aims to increase collaboration between Extra Mural Program and Ambulance NB paramedics.

New efforts

Work is underway to implement Interdisciplinary palliative care competency framework for family physicians, nurse practitioners, and palliative care physicians across settings. The framework defines referral guidelines, standardized assessment and monitoring tools and required physicians’ and nurse practitioners’ competencies.

Indicator:

Cumulative length of stay for cancer patients who were in or admitted to an acute care hospital 30 days prior to death across NB

Improving access to quality end-of-life care

Where we are today

Place of death for Nova Scotians dying of cancer

Hospice: 1.9% in 2019, 3.2% in 2020. Palliative care unit: 22.3% in 2019, 18.0% in 2020. Residential facility or at home: 26.4% in 2019, 36.9% in 2020. In hospital: 49.4% in 2019, 41.9% in 2020.

Data source: Provincial cancer agencies and NSH administrative databases
Notes:

‘Residential facility or home’ includes Long Term Care facilities, Residential Care facilities and Continuing Care facilities
‘In Hospital’ includes acute care and community care hospital units (excluding Palliative Care Units located within the same facility)
The COVID-19 pandemic may have affected service provision.

Click here to see all data and data limitations, including any additional stratifications.

Our goal

Enhance the quality of life for patients and their families with life-limiting illness through provision of palliative care services in a range of settings across the care continuum.
Support patients and families to receive palliative care services early in their disease trajectory, as well as in their setting of choice in the last weeks/days of life.
Enable patients, families, and health providers across the care continuum to understand the palliative approach to care.

Current situation

Palliative care services are provided by primary care (a palliative approach) and 9 specialist palliative care teams located in each of the 4 health management zones and the Izaak Walton Killam (IWK) Centre in Nova Scotia.
- Interdisciplinary palliative care specialist teams work collaboratively with primary health care providers, home care providers and other specialty areas (e.g., oncology, respirology, neurology) to provide care to patients and families. These specialist teams offer a range of supports to providers from capacity building and education, research, mentorship, short-term consultative to ongoing shared care, based on complexity of the patient care needs, which may change over time.
Education of the palliative approach to care is a priority strategy to build capacity for health care providers
An interprofessional palliative care competency framework for providers of all backgrounds has been developed

New efforts

Ongoing development of education and resource tools to support health care providers
Ongoing development of a minimum data set and key metrics to support a data-driven and quality-improvement approach within palliative care
Development and implementation of a bereaved caregiver survey to understand the needs and priorities of patients and families
Development of a Goals of Care policy that identifies a standardized approach to discussing, determining, and documenting goals of care. As well, associated education resources are in development that will be used across the continuum of care within the health authority.
- This guides clinicians through the key components for consideration and documentation when discussing and deciding on a level of intervention with patients and/or their delegate.
- It also enables a common language and understanding of levels of intervention across the health care system and supports quality and continuity of care.

Indicator:

Place of death for Nova Scotians dying of cancer

Improving access to culturally safe palliative care

Where we are today

Indicator data is not available at this time.

Our goal

Enhance access to palliative care services across the continuum of care and as close to home as possible
Support person-centered, individualized care by integrating patient values and goals of care into decisions about their health care and treatment
Build capacity and readiness of the workforces to provide a palliative approach to care

Current situation

Capacity building for the workforce is enabled through the education of the palliative approach to care for providers across the care continuum
Palliative care patients can access support for pain and symptom management at home, including through the support of paramedics who are trained to manage palliative care symptoms
The Palliative Care Drug Program ensures that the costs of palliative care medications are not a barrier for symptom control through minimizing the financial burdens for those who choose to end-of-life care at home
The Nova Scotia Palliative Care Competency Framework describes competencies for 15 interprofessional roles that support Palliative Care services, with cultural safety being a competency domain within the framework
Nova Scotia Health has range of organizational wide strategies to support access to culturally safe palliative care services, which includes:
- A provincial diversity and inclusion framework that enables sustainable diversity resources and initiatives throughout the province
- A Diversity Lens Toolkit is available to all Palliative care providers. This toolkit provides practical, cultural‐competence assessment tools and resources to help integrate diversity in Nova Scotia Health Authority workplaces
- A diversity, equity, and inclusion library guide as well as learning sessions are available to all Palliative Care providers in Nova Scotia Health (e.g., cultural competence, 2SLGBTQIA+ Awareness, Allyship in Action)

New efforts

Cultural education and training is being provided by Iindigenous community members to palliative care teams to support teams to provide culturally appropriate care and apply cultural teachings as it relates to life, death and dying in Indigenous populations
Exploration is occurring regarding barriers to care and exploration of available resources
Ongoing education of the palliative approach to care to build capacity for health care providers that considers the cultural needs
Ongoing development of a minimum data set and key indicators that are culturally relevant to support a quality approach within palliative care
Development of a Goals of Care policy that identifies a standardized approach to discussing, determining, and documenting goals of care. The policy supports the identification of goals of care that culturally relevant and are based on personal values, wishes, and beliefs.

Indicator:

Indicator data is not available at this time.

Improving access to quality end-of-life care

Where we are today

Cumulative length of stay for cancer patients who were in or admitted to an acute care hospital 30 days prior to death across PE, for fiscal years 2015, 2017 and 2019
Median: 2015: 16 days. 2017: 15 days. 2019: 12 days. 90th percentile: 2015: 51 days. 2017: 49 days. 2019: 42 days.

Data source: Canadian Institute for Health Information (CIHI), Discharge Abstract Database (DAD)
Click here to see all data and data limitations, including any additional stratifications.

Our goal

Ensure the best possible quality of life for people with cancer who require palliative care and their families.
Successfully manage symptoms for people with cancer at the end of their life.
Help people with cancer and their families to better understand and accept the concept of palliative care/end-of-life care.

Current situation

Paramedics are trained to deliver palliative and end-of-life care in patients’ homes, allowing patients to remain at home whenever possible.
The PEI Cancer Treatment Centre (PEICTC) works in collaboration with the Provincial Integrated Palliative Care Program (PIPCP). The PIPCP and end-of-life related services are easily accessed through referral from healthcare professionals, family members or self-referral.
Each of the five regions across PEI has a palliative care coordinator who assesses patients for care at home or in palliative care and refers them to available palliative care beds across PEI when appropriate.
Palliative care coordinators support people with cancer across PEI in accessing care in home, hospital or at the palliative care centre to meet their care needs during their end-of-life journey.
Training in the palliative approach to care for healthcare professionals (family physicians, nurse practitioners and allied health team) has been successful.

New efforts

The province is working to provide earlier and better access to palliative care across a wide variety of settings, including primary care, long-term care, and in First Nations communities.
Standardized symptom assessment tools such as the Edmonton Symptom Assessment System-Revised (ESAS-R) are available in the electronic medical record for use by healthcare providers. This will support appropriate referrals to palliative care for better quality of end-of life care for people with cancer.
All healthcare providers can use the ESAS tool to evaluate their patients on regular basis.
People with cancer can use the ESAS tool themselves to do a self-assessment and send the results to their health provider.
Efforts are underway to rebrand palliative care to mean improved quality of life rather than end of life.

Indicator:

Cumulative length of stay for cancer patients who were in or admitted to an acute care hospital 30 days prior to death across PE

Improving access to culturally safe palliative care

Where we are today

Percentage of patients identified for palliative care who have advanced care planning/goals for care discussions initiated
100% in both 2021 and 2022.

Data source: Provincial cancer agencies and programs
Notes:

All PEI patients enrolled in the Integrated Palliative Care Program have Advanced Care Plans and Goals of Care identified.
Patients may have identified specific cultural wishes within these plans.
The COVID-19 pandemic may have affected service provision.

Click here to see all data and data limitations, including any additional stratifications.

Our goal

Increase timely access to a fully Provincial Integrated Palliative Care Program.
Ensure all people with cancer and families are supported to identify goals of care that reflect their beliefs, cultural values and spiritual needs.
Ensure the Provincial Integrated Palliative Care Program fully supports the goals of care and advance care plans of people with cancer and their families.

Current situation

An assessment of palliative care services is conducted with patients 30 days after registration and with families within 6 weeks of a patient’s death to gather feedback about the experience and their satisfaction with the palliative care program.

New efforts

Healthcare professionals providing end-of-life care have access to training in cultural respect and consideration of diverse cultural needs and habits after death.
Work continues to provide earlier and better access to palliative care across a wide variety of settings, including primary care, and in First Nations communities.
Continue to collaborate and build relationships and connections with Indigenous health partners and communities to support the implementation of a Cancer Strategy for Mi’kmaq Communities of PEI.

Indicator proxy:

Percentage of patients identified for palliative care who have advanced care planning/goals for care discussions initiated

Improving access to quality end-of-life care

Where we are today

Cumulative length of stay for cancer patients who were in or admitted to an acute care hospital 30 days prior to death across NL
2015: Median is 14 days, and 90th percentile is 43 days. 2017. Median is 13 days, and 90th percentile is 43 days. 2019: Median is 11 days, and 90th percentile is 38 days.

Data source: Canadian Institute for Health Information (CIHI), Discharge Abstract Database (DAD).
Click here to see all data and data limitations, including any additional stratifications.

Our goal

Increase access to supportive care and palliative and bereavement services through social policies and initiatives.
Raise the profile of supportive, rehabilitative and end-of-life care in the province.

Current situation

Paramedics in Eastern Health are being trained to deliver palliative and end-of-life care in people’s homes, allowing patients to remain at home whenever possible.

New efforts

A Provincial palliative care resource guide was developed in March 2022.
- This guide reflects the palliative care services available across Newfoundland and Labrador and provides healthcare professionals the information and contacts needed to support patients and families during their palliative care journey.

Indicator:

Cumulative length of stay for cancer patients who were in or admitted to an acute care hospital 30 days prior to death across NL

Improving access to culturally safe palliative care

Where we are today

Percentage of Health Care Providers who completed the Learning Essential Approaches to Palliative Care training who had knowledge of the following competencies one year post-training, for years 2018-21

Explaining palliative approach 96%. Forming care plan 91.3%. Offering spiritual guidance 88.5%. Discussing advanced care planning 82.1%. Identifying palliative sedation 63.2%.

Data source: Provincial cancer agencies and programs
Click here to see all data and data limitations, including any additional stratifications.

Our goal

Improve the structure and frequency of having advanced care planning (ACP) and goals of care (GOC) discussions with people dealing with cancer and their families.
Increase access to supportive care and palliative and bereavement services for people living with cancer.

Current situation

Often, ACP and GOC conversations lack a formal approach and sound more like “Do you have your affairs in order?” and “Do your loved ones know your wishes?” pertaining to end-of-life care.
Although our staff are confident these conversations are taking place, there is a need to improve documentation.
Education from the pastoral/spiritual care department of the former Eastern Health region was provided to front line nursing staff in April 2022. Resources were shared and referral pathways for grief and bereavement reviewed.
Although Learning Essential Approaches to Palliative Care training is not required for NL Cancer Care staff there is an effort to accommodate staff to attend when the training is available.

New efforts

Memorial University of Newfoundland and Labrador is currently conducting a project to create a learning module for Palliative Care Training that will be inclusive of Cultural Safety, Cultural Intelligence and Cultural Humility for the use and benefit of palliative care professionals working with Indigenous peoples in Canada.
Referral processes are being standardized so that people with cancer who need palliative care are identified earlier.
Work is underway to improve the experience of people with cancer and their families through a person-centered care plan.
Paramedics in Eastern Health are being trained to deliver palliative and end-of-life care in people’s homes, allowing patients to remain at home whenever possible.
Patshitinikutau Natukunisha Tshishennuat Uitshuau (A Place for Elders to Spend their Last Days in Life: Developing an Innu Approach to Palliative Care) is a collaboration between the Innu Nation, Sheshatshiu Innu First Nation, Labrador-Grenfell Regional Health Authority, Memorial University’s Faculty of Medicine, and the Labrador Institute.
This project is working to connect people with cancer to palliative care earlier and to honour end-of-life practices.

Indicator:

Select jurisdiction to see progress:

Improving care for adolescents and young adults with cancer

Why we are focusing on specialized care plans for adolescents and young adults with cancer^1-3

Every year, 7,600 Canadians aged 15 to 39 years are diagnosed with cancer.³
Adolescents and young adults with cancer face unique challenges during their cancer journey. These challenges can include the impact of treatment on their fertility and delays in their education and careers while they undergo treatment and recovery.
Cancer treatments can harm ovaries and testes, but many adolescents and young adults do not receive counselling on options such as egg or sperm preservation before starting treatment. These services can also be too expensive for young people and their families, and access to financial supports for fertility preservation treatments varies across provinces and territories.
Adolescents and young adults need other specialized care to meet their needs. This care should address issues such as support to go back to school or work and survivorship care that is suitable for people early in their adult lives.
Cancer occurs less often in adolescents and young adults than in older adults, but the impacts on individuals, society and the economy are significant because young cancer survivors will live another 50 to 60 years.
The need for adolescents and young adults to connect has increased during the COVID-19 pandemic as a result of social isolation and the limited in-person social and emotional support services available.

What we want to achieve

Adolescents and young adults with cancer receive interdisciplinary, specialized care and survivorship plans adapted to the needs of the individual.
Adolescents and young adults with cancer and their families engaged as true partners throughout care and survivorship.
Adolescents and young adults receive cancer information and resources that are age appropriate and reflect their unique experience.

What this would mean for people in Canada

Adolescents and young adults with cancer get high-quality care and support appropriate for their age and stage of life, leading to improved patient satisfaction, quality of life and patient outcomes.
Adolescents and young adults with cancer get the information and supports they need as they navigate the healthcare system and beyond into long-term survivorship.

Where we are today in Canada
45.8% of adolescents and young adults with cancer had a speclialized care plan
See supplementary information about improving care for AYAs in Canada.

Young Adult Cancer Canada (YACC) distributed a short online survey in 2021 to collect qualitative and quantitative information from adolescent and young adult (AYA) patients with cancer and survivors aged 15 to 39 about their experience. This included a focus on better understanding the use of care plans among AYAs, and identifying key transitions in care.
Of the 336 AYAs with cancer who participated in the YACC survey, those who had a specialized care plan/pathway were more often: younger AYAs (aged 15 – 29), other gender identity and males (compared to females), and those living in urban areas (compared to rural and remote).

Improving transitions for adolescents and young adults with cancer

Why we are focusing on improving transitions for adolescents and young adults with cancer^1,4

As children and young adults with cancer get older, they move from pediatric care into adult care and from cancer care to primary or community care.
These changes can be difficult. They may lose support services they depend on and processes to access care may be different. They can easily “fall through the cracks”.
Young adults who survive cancer face many challenges. Over ninety per cent experience emotional challenges long after treatment ends, including depression, changes in body image and worry about cancer returning.
Practical challenges are also a concern for at least 80 per cent of adolescents and young adults with cancer, who are worried about returning to school or securing a full-time job after treatment is over.
About 37 per cent of adolescents and young adults are not confident that their primary care providers can take care of their post-treatment needs.⁵
Psychological, economic and well-being challenges have increased for adolescents and young adults with cancer during the pandemic, and they are often left to self-manage their care/symptoms.

What we want to achieve

Pediatric and adult cancer care systems work together to improve transitions into adult cancer care, and better support adolescents and young adults as they complete treatment and transition back to primary and community care
Care and survivorship support addresses the unique needs of adolescents and young adults with cancer—including fertility counselling, age-appropriate psychological counselling and supports to resume their career development or to get back to work
Adolescents and young adults receive the information, tools and supports they need to manage and cope while living with and beyond cancer

What this would mean for people in Canada

Adolescents and young adults with cancer get high-quality care and support appropriate for their age and stage of life, leading to increased well-being, the chance to return to work and school, and meaningful participation across all areas of their lives

Where we are today in Canada
45.5% of adolescents and young adults with cancer had a positive experience of transition in care
See supplementary information about improving transitions for AYAs in Canada.

Young Adult Cancer Canada (YACC) distributed a short online survey in 2021 to collect qualitative and quantitative information from adolescent and young adult (AYA) patients with cancer and survivors aged 15 to 39 about their experience. This included a focus on better understanding the use of care plans among AYAs, and identifying key transitions in care.
Of the 336 AYAs with cancer who participated in the YACC survey, those who had a positive experience of transition in care along their cancer journey were more often: other gender identity and males (compared to females) and those living in remote and urban locations (compared to rural).

Improving care for adolescents and young adults with cancer

Where we are today

Data specific to Alberta is unavailable at this time. Click here to see information about care for AYAs across Canada.

Our goal

Enrich care and empower adolescents, young adults and their supports to live well with and beyond cancer.

Current situation

Alberta has adolescent and young adult (AYA) programming available to all young people diagnosed with cancer between the ages of 15-29 to assist with the physical, practical and emotional challenges that come with a cancer diagnosis, regardless of site of care. AYA programs exist at the Cross Cancer Institute and Tom Baker Cancer Centre with a dedicated multidisciplinary team and AYA nurse navigators to provide tertiary level AYA care and serve as a resource to the province.
Clinical guidelines are in place to guide the care provided to AYAs.

New efforts

AYA-specific screening pathways are in development for the launch of Alberta’s new electronic medical record (Connect Care). The pathways will help to alert AYAs and their teams to the unique care needs of AYAs and facilitate timely referrals for support.
A provincial pathway to guide fertility preservation is in development.

Indicator:

Indicator data not available at this time.

Improving transitions for adolescents and young adults with cancer

Where we are today

Data specific to Alberta is unavailable at this time. Click here to see information about care for AYAs across Canada.

Our goal

Enrich care and empower adolescents, young adults and their supports to live well with and beyond cancer.

Current situation

The AYA Patient Navigation Program supports adolescents and young adults on their cancer journey and ensures that their distinctive needs are supported.
AYA-specific end-of-therapy classes are available in Edmonton to provide transition and survivorship support to those with more complex challenges.

New efforts

AYA-specific screening pathways are in development for the launch of Alberta’s electronic medical record (Connect Care). The pathways will help to alert AYAs and their teams to the unique care needs of AYAs and facilitate timely referrals for support.

Indicator:

Indicator data not available at this time.

Improving care for adolescents and young adults with cancer

Where we are today

Percentage of adolescents and young adults (AYA) with cancer who had a specialized care plan pathway in Manitoba

Overall: 57.7% Age group 15-29 years 54.5% 30-39 years 60% Female: 46.2% Male: 69.2% Location Remote/Rural: 57.1% Urban: 57.9%

See information about care for AYAs in Canada.

Data source: Young Adult Cancer Canada (YACC) Survey 2021
Note:

Other gender category was excluded from the graph due to no responses.
The COVID-19 pandemic may have affected service provision.

Click here to see all data and data limitations, including any additional stratifications.

Our goal

CancerCare Manitoba’s (CCMB’s) Adolescents and Young Adults (AYA) Program aims to provide personalized, multidisciplinary and enhanced cancer care and education, access to clinical trials, psychosocial support, nutritional counselling, fertility preservation, sexuality counselling, physical and vocational rehabilitation, and palliative and survivorship care to AYAs diagnosed with cancer in Manitoba.
CCMB continues to work towards the aims outlined by the Canadian Framework for the Care and Support of Adolescents and Young Adults with Cancer and expand on its current AYA Program.

Current situation

The AYA multidisciplinary care program has recently been expanded, please see more details in “new efforts” below. The existing AYA Psychosocial Oncology Clinician continues to provide individualized therapy and support groups to AYAs and their supporters.
CCMB’s Cancer Aftercare Program provides comprehensive survivorship care for survivors of childhood or adolescent cancers, typically for 10 years or up to the age of 30.
A Moving Forward after Cancer Treatment as an Adolescent or Young Adult booklet outlines resources available to AYAs who have completed their cancer treatment and has been available since 2018 in clinics and online.
Since 2013, the AYA Regional Action Partnership (RAP) committee in Manitoba has worked to implement recommendations set out by the Canadian Task Force on AYAs with Cancer, prioritizing oncofertility, access to clinical trials and enhanced psychosocial supports for the AYA program.
- The AYA Oncofertility group has provided education sessions to CCMB staff relating to AYA fertility needs and developed standard operating procedures for sperm and egg cryopreservation for pediatric oncology patients.
- The AYA program has made the Precision Oncology For Young People (PROFYLE) research program accessible to cancer patients up to 29 years of age.

New efforts

CCMB hosts monthly AYA support groups and is working to launch an AYA-specific section on the CCMB website.
A research project examining the mental health of AYAs with cancer treated in Manitoba using administrative databases is in progress.
A virtual AYA brain fog psychoeducational program  took place in 2021. A pilot study assessing the impact of this program on cognitive function and mental health has been completed and a knowledge translation component will be rolled out soon.
A research project exploring the experiences of the gender and racially diverse AYAs with cancer in the Canadian healthcare system is underway.
In collaboration with CCMB Screening Programs, the AYA Program has formulated individualized guidelines for cancer screening recommendations for AYA cancer survivors who may require additional or earlier breast and colon cancer screening based on effects of their cancer treatment.
In May 2021 and June 2022, CCMB and the CancerCare Manitoba Foundation partnered with Young Adult Cancer Canada to co-host Primetown, a virtual Canada-wide summit for young adult cancer patients/survivors, their supporters (parents, caregivers, friends, partners), health professionals and researchers. Primetown provides networking opportunities, workshops, keynote speakers and social activities to connect, support and empower young adults diagnosed with cancer and those supporting them.
CCMF has funded an infrastructure grant to further expand the AYA program at CCMB in June 2022. Under this expansion, a clinical nurse specialist, physiotherapist, occupational therapist, physiatrist and dietician in conjunction with other members of AYA program and disease site groups will provide interdisciplinary, evidence-informed, enhanced supportive care to AYAs with cancer throughout the cancer trajectory from diagnosis to survivorship or palliative care in every disease site group. This expansion will also broaden the scope and strength of AYA research by enhancing access to clinical trials and creating an AYA research platform at CancerCare Manitoba Research Institute.

Indicator:

Percentage of AYA with cancer who had a specialized care plan pathway

Improving transitions for adolescents and young adults with cancer

Where we are today

Percentage of AYA with cancer who had a positive experience of transition in care along their cancer journey in Manitoba
Overall: 30.8% Age 15-29 years is 36.4% 30-39 years is 26.7% Female: 23.1% Male: 38.5% Remote/Rural: 0% Urban: 42.1%

See information about care for AYAs in Canada.

Data source: Young Adult Cancer Canada (YACC) Survey 2021
Note:

Other gender category was excluded from the graph due to no responses
Of the people who responded to the survey from a remote/rural location, no one reported having a positive experience of transition in care along their cancer journey.
The COVID-19 pandemic may have affected service provision.

Click here to see all data and data limitations, including any additional stratifications.

Our goal

CancerCare Manitoba’s (CCMB’s) Adolescents and Young Adults (AYA) Program aims to provide personalized, multidisciplinary and enhanced cancer care and education, access to clinical trials, psychosocial support, nutritional counselling, fertility preservation, sexuality counselling, physical and vocational rehabilitation, palliative and survivorship care to AYAs diagnosed with cancer in Manitoba.
CCMB continues to work towards the aims outlined by the Canadian Framework for the Care and Support of Adolescents and Young Adults with Cancer and expand on its current AYA Program.

Current situation

A Moving Forward after Cancer Treatment as an Adolescent or Young Adult booklet outlines resources available to AYAs who have completed their cancer treatment and has been available since 2018 in clinics and online.
At CCMB, all adolescents (15-17 years old at the time of diagnosis) receive a Survivorship Care Plan and are followed up via a comprehensive Survivorship Clinic up to 30 years of age.
Most AYAs over 17 years old attend a transitional appointment to discuss the transition of their care to a primary care provider and to receive a survivorship/transition care plan. AYAs can continue to access psychosocial counselling at CCMB after their medical care has been transitioned back to their primary care provider.

New efforts

CCMB hosts monthly AYA support groups and is working to launch an AYA-specific section on the CCMB website.
A research project examining the mental health of AYAs with cancer treated in Manitoba using administrative databases is in progress.
A virtual AYA brain fog psychoeducational program took place in 2021. A pilot study assessing the impact of this program on cognitive function and mental health has been completed and a knowledge translation component will be rolled out soon.
In collaboration with CCMB Screening Programs, the AYA Program has formulated individualized guidelines for cancer screening recommendations for AYA cancer survivors who may require additional or earlier breast and colon cancer screening based on effects of their cancer treatment.
In May 2021 and June 2022, CCMB and the CancerCare Manitoba Foundation partnered with Young Adults Canada to co-host Primetown, a virtual Canada-wide summit for young adult cancer patients/survivors, their supporters (parents, caregivers, friends, partners), health professionals and researchers. Primetown provides networking opportunities, workshops, keynote speakers and social activities to connect, support and empower young adults diagnosed with cancer and those supporting them.
CancerCare Manitoba Foundation has funded an infrastructure grant to further expand the AYA program at CCMB in June 2022. Under this expansion, a clinical nurse specialist, physiotherapist, occupational therapist, physiatrist and dietician in conjunction with other members of AYA program and disease site groups will provide interdisciplinary, evidence-informed, enhanced supportive care to AYAs with cancer throughout the cancer trajectory from diagnosis to survivorship or palliative care in every disease site group. This expansion will also broaden the scope and strength of AYA research by enhancing access to clinical trials and creating an AYA research platform at CancerCare Manitoba Research Institute.

Indicator:

Percentage of AYA with cancer who had a positive experience of transition in care along their cancer journey

Improving care for adolescents and young adults with cancer

Where are we today

Percentage of AYA with cancer who had a specialized care plan pathway, 2021
Overall is 44%. Age 15 to 29 is 64.5%. Age 30 to 39 is 32.1%. Females at 37%. Males at 52.8%. Rural at 19%. Urban at 54.1%.

See information about care for AYAs in Canada.

Data source: Young Adult Cancer Canada (YACC) Survey 2021
Note: There is variability across age groups, gender and location in terms of the perception of access to a specialized care plan pathway.
Click here to see all data and data limitations, including any additional stratifications.

Our goal

Ontario, via a joint initiative of Ontario Health (Cancer Care Ontario) and the Pediatric Oncology Group of Ontario (POGO), is advocating for actions to reduce unwarranted variation in care delivery, clinical outcomes and patient experience for adolescents and young adults (AYA) facing cancer.

Current situation

A project supported by the Ontario Ministry of Health and the Canadian Partnership Against Cancer aimed to embed appropriate and timely referrals for fertility counselling in care plans in select jurisdictions.
Adult and pediatric clinical teams in three jurisdictions developed and implemented age-appropriate fertility counselling and referral care pathways for AYA with cancer and adapted these pathways to meet needs for specific underserved populations.
There is a need to define and evaluate the value of having specialized care plan pathways on experience and outcomes. These findings reinforce the importance of measuring the experience of sub-groups within the diverse population of AYA experiencing cancer so that actions can be tailored to promote equity.

New efforts

Ontario plans to leverage the newly formed local collaborations, learnings and tools to expand the fertility initiative to additional jurisdictions. This will serve as a foundation for future AYA cancer care quality improvement priorities.

Indicator:

Percentage of AYA with cancer who had a specialized care plan pathway

Improving transitions for adolescents and young adults with cancer

Where we are today

Percentage of AYA with cancer who had a positive experience of transition in care along their cancer journey, 2021
Overall at 40.5%. Age 15 to 29 at 45.2%. Age 30 to 39 at 37.7%. Females at 32.6%. Males at 52.8%. Rural at 28.6%. Urban at 42.6%.

See information about care for AYAs in Canada.

Data source: Young Adult Cancer Canada (YACC) Survey 2021
Click here to see all data and data limitations, including any additional stratifications.

Our goal

Establish collaborations and partnerships to enable optimal care delivery and patient experience including through transition points for adolescents and young adults with cancer (AYA).

Current situation

A provincial advisory committee that includes patients and clinicians from both adult and pediatric care systems has been established for Ontario to inform improvement initiatives. A new AYA-specific data cohort was created to support measurement and planning.
The low percentage of respondents reporting a positive experience of transition reinforces the need for continued focus on this aspect of AYA cancer care.
There is uncertainty about where there are the greatest opportunities for improvement (e.g. among adults transitioning to primary care, or adolescents transitioning to adult care).
An evaluation is underway regarding the utilization of long-term follow-up clinics among childhood cancer survivors in Ontario. This includes adolescents who are transitioning to adult centres for ongoing care.

New efforts

The AYA data cohort can be linked to additional data holdings to assist with identifying care and experience variations to inform health system planning, research and program development.

Indicator:

Percentage of AYA with cancer who had a positive experience of transition in care along their cancer journey