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Safe Long Term Care Act engagement: What we heard report

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Introduction

Every person in Canada deserves to live in dignity, safety, and comfort. While the majority of people in Canada want to age closer to home and their family, if they need long-term care (LTC), they expect and deserve it to be high quality and safe.

Recognizing the need to improve the quality, safety, equity and availability of LTC services across Canada, we are developing a Safe LTC Act. It will complement recent federal investments, including:

Context and overview of the consultation process

The development of a Safe LTC Act and national LTC standards are Ministerial mandate priorities.

In January 2023, we welcomed the release of complementary, independent national LTC standards from the CSA Group and the Health Standards Organization (HSO). Together, the standards focus on the delivery of safe, reliable and high-quality LTC services; safe operating practices; and infection prevention and control measures in LTC homes.

Following the release of the LTC standards, we have moved our attention to the development the Safe LTC Act. This legislation will respect provincial and territorial jurisdiction: it won't mandate standards or regulate LTC delivery. Instead, it will outline guiding principles to support quality and safety in LTC.

To inform the development of the Safe LTC Act, we heard from provinces and territories, other federal departments, Indigenous Peoples, stakeholder organizations, academics, as well as LTC residents, staff and caregivers in 5 different forums:

We also reviewed findings from previous complementary Indigenous engagement activities in relation to the co-development of distinctions-based Indigenous health legislation, a Long-Term and Continuing Care Framework, as well as the national LTC standards developed by the CSA Group and the HSO.

Learn more about the co-development of distinctions-based Indigenous health legislation

To reach the broader public in Canada, we hosted a bilingual online consultation from July 21 to September 21, 2023. Participants could share their thoughts through an online questionnaire, via mail and via email (LTC-SLD@hc-sc.gc.ca). The questionnaire included 6 thematic questions, plus a specific question for individuals who self-identified as Indigenous on culturally safe LTC services. Efforts were made to obtain responses from a diverse range of participants (such as minority groups, rural residents) through use of a targeted email campaign and amplification by other relevant departments, including Employment and Social Development Canada and Indigenous Services Canada.

We received a total of 5,140 responses to the questionnaire. Most responses (4,631) were from individuals; the remaining 410 responses were from representatives of organizations; and 99 selected "prefer not to answer." Fifty organizations sent in formal written briefs.

The feedback gathered helped to identify potential themes and principles to inform a Safe LTC Act, as outlined below.

What we heard during meetings and through the online consultation

Principle 1

Continuum of care: acknowledges that LTC is 1 part of a continuum of supportive care, supported by intersectoral collaboration, and that most people would prefer to live in the community, with access to home and community care

Long-term care must be seen in this light, as a necessary support to aging... We need to support the aging process everywhere, all the time, in order to act preventively and lend collective assistance to our seniors (think of initiatives such as "Age-Friendly Municipalities"). Long-term care must be part of this continuum, which includes care at home for as long as patients wish, and assistance and support for family caregivers by default.

‒ Caregiver, Québec

We heard first and foremost that most people would prefer to age at home with necessary supports rather than in LTC. Despite this reality, accessing adequate home care services can be challenging: limited publicly-funded services are available and accessing additional services out-of-pocket can be costly. We heard that this results in many low-to-medium-income individuals going into LTC before it is needed. There is also pressure on family members and loved ones to fill in gaps in care.

To help address these concerns, suggested solutions included:

Participants noted that, considering the aging population and long LTC waitlists, there is a need for new LTC infrastructure to accommodate those who cannot be cared for safely in their home (particularly those with dementia). Many noted the need to treat LTC as a component of the continuum of care that is connected to community support services and primary care, with supports for transitional care. To achieve this objective, it was suggested that it is first important to better outline the roles and responsibilities of the federal government, provincial and territorial governments and local Indigenous governments. Some cited the need for enhanced intersectoral collaboration and communication to this end, for example though multi-jurisdictional/interdisciplinary committees or working groups. Such groups could support planning over the longer-term, with the involvement of residents, caregivers, family members and workers.

Many also cited the need to look to countries such as Denmark, that prioritize in-home and community supports over institution-based care.

Read about the delivery of LTC services in Denmark

Participants cited several models present in Canada and abroad that support aging in the community, which could potentially be implemented more widely. Examples include:

Comments were also raised regarding the need to focus on end-of-life, with a more embracive and palliative philosophy of care, highlighting a connection in the continuum of care between LTC and end-of-life care. Participants also noted the importance of offering palliative care earlier in the process, so that pain and symptoms are treated in early stages.

Indigenous Peoples

Indigenous people who participated in complementary Indigenous engagement activities noted that LTC should be seen as part of a holistic continuum of care that encompasses Indigenous ways of knowing and being. One of their biggest challenges is supporting their seniors so that they remain close to family and supports within their home communities.

Younger persons with disabilities

Younger persons with disabilities noted the particular issues surrounding institutionalized LTC for this commonly overlooked minority population. It was emphasized in discussions that, first and foremost, LTC homes are not and will never be a suitable place for younger persons with disabilities to live, and that they are not an appropriate alternative to care in the community or in the home. The lack of agency and autonomy for residents render LTC homes unsafe for the mental health of younger people. It was emphasized that allowing persons with disabilities to live at home and in their communities should be the focus, and independent living as the goal.

Principle 2

Meaningful quality of life: supports holistic care and accommodations that value the respect, autonomy, dignity, personal goals, and individuality of residents and is focused on overall wellness

When thinking about LTC in particular, clinical and business indicators are important but if you ask a person who lives in LTC what is important to them, they won't talk about wounds, falls, finances, medications, etc. They will say...it's having a friend, having my family/friends around me, living in a place that's clean and there are meaningful things to do during the day, evening and weekend. being cared for by people who care about me and are like my family (and the number of staff is sufficient to support my health and well-being)...having opportunities to give back to others, being part of decision-making. We have to stop the paternalistic attitude in providing care where they exist. People need information to make their decisions, but the doctor, nurse or others may not know what is important for a resident. They may not want them to take a risk, but we all take risks everyday.

‒ LTC provider and spouse/family member of a LTC resident, Ontario

Participants emphasized the need for person-centred care that supports quality of life and respects the independence, dignity and choice of LTC residents. They cited several models present in Canada and abroad which could potentially be implemented to this end. Examples include:

Some participants suggested using less clinical terminology to emphasize identity and inclusivity for those living in LTC. Some examples discussed include the following:

Participants mentioned 3 other areas that contribute to meaningful quality of life.

Balancing risk and safety

Some participants emphasized the importance of joy in LTC and the right of residents to live with risk while balancing fellow residents' right to safety. This means that residents can choose to participate in fulfilling activities, even if there is some risk of harm. Several commented on the isolation LTC residents experienced during the COVID-19 pandemic and the negative impacts this had on their mental health and quality of life.

Infrastructure and built environments

Several participants spoke to the need for things like single rooms (or shared rooms for couples), private washrooms, improved air quality, smaller and more home-like models, natural light, outdoor spaces, accessible gyms and modern design to support resident comfort and quality of life.

Family and other informal caregivers

Many participants emphasized the need to recognize family and other informal caregivers as true partners in care. Caregivers who provide care to family and friends, both in the community and in LTC, are essential to supporting the wellbeing of seniors and persons living with a disability. It is also important to ensure that LTC staff can spend one-on-one time with residents. In this vein, many advocated for safe staffing levels, noting that "the conditions of work are the conditions of care."

What experts say about staffing in LTC

Responses related to staffing are explored in greater depth later in the report under Principle 4.

Principle 3

Inclusion: supports care and workplaces that are culturally-safe, non-discriminatory, and trauma-informed and LTC homes that are inclusive, respectful and value the diversity of those who live and work there

We heard that the Safe LTC Act must prioritize inclusion and respond to diversity in terms of age, gender and sexual orientation, ethnicity, language, experiences with trauma, religious beliefs and other factors. Participants noted gaps in the current system, where the needs of different populations are not always met.

It was noted that 2SLGBTQI+ persons (including non-binary persons) may feel unsafe and unable to express themselves freely in LTC settings. Younger people with disabilities noted feeling out of place in LTC, as the activities and food tend to cater to older people. They also cited accessibility barriers. Indigenous people living in LTC also called for access to cultural programming that incorporates traditional foods, practices, ceremonies and language.

Language barriers were also noted. While it is important for residents to have access to care in the language of their choice, we heard that staff are often not available to meet this need. For example, we heard that Francophones outside of Québec are often receiving care from unilingual Anglophone providers. Indigenous Elders face similar language barriers when receiving care from non-Indigenous staff.

Participants reminded us that LTC is primarily care for women, by women. Based on Canadian Institute for Health Information data, 64% of LTC residents are female; this increases up to 72% among residents who are aged 85 and older. PSWs provide the bulk of care. Based on data from Statistics Canada, 87% of PSWs are women and 35% are newcomers. Given the complexity of care needs of the residents they serve, it is important to ensure this workforce is well-supported.

Information references:

Participants offered ideas to help provide a safe and inclusive environment, both for residents and for staff. The examples included developing:

Cultural safety

Health Care (and Long-Term Care in particular) is drastically understaffed and definitely not practicing any cultural sensitivity training amongst the staff. There needs to be a facility in at least 1 of the Inuit communities in Labrador. Elders are being sent to HVGB [Happy Valley-Goose Bay] to die....to die of old age....to die of health conditions....to die of loneliness....to die of disconnection to the only culture and life that they've ever known. The Innu of Sheshatshiu have taken it upon themselves to build a long-term care facility in their community to ensure that Innu elders are able to stay home in their community surrounded by their family and their culture. This brand new facility should be a model for all indigenous communities to follow in the interest of everyone's well being.

‒ Inuit caregiver and spouse/family member of LTC resident, Newfoundland and Labrador

The public consultation's online questionnaire included a specific question directed to those self-identifying as Indigenous (and for organizations serving Indigenous Peoples), which asked about what it means to support cultural safety for First Nations, Inuit and Métis people in LTC. Several themes emerged in the responses:

Principle 4

Quality care and safety: supports integrated, evidence-based care provided by a diverse, qualified, and well-supported workforce in safe and clean environments

I love working in LTC. I respect and love our residents. I often leave work in tears as I know I did the best I could, but that did not equal what was best for the residents. As much as they need medication, treatments, food and drink, they need to feel cared for. Staff do not have the time to sit and talk to them when they need us - unless it is urgent. Sometimes they are lonely, a tv or sitting with non-verbal co-residents doesn't cut it. They want to talk about their lives, their family, their past and we, as staff have to rush out to get to the next resident. LTC sites are so underfunded it is disgusting. Our staff often go without breaks, we are so tired. We are working double shifts, short staffed and going without breaks. Please, please, please - get us the staffing levels we need to ensure the care of our residents....and preserve our healthcare workers...not sure how long we can keep going.

‒ LTC Provider, Alberta

Many participants shared personal stories about family members and loved ones living in LTC. While some were satisfied with the care received, others felt it was inadequate, often due to a lack of staff. Participants encouraged adequate staffing levels (many specifically cited the need to provide 4.1 direct care hours per resident per day, which is commonly cited as the average minimum number of direct care hours required to support safe resident care).

Many expressed needing to consistently provide additional care themselves and/or needing to advocate on the resident's behalf. In a similar vein, some participants expressed fear about reporting inadequate or inappropriate care out of fear that this could have repercussions (i.e., staff could take out frustrations on the resident). Many suggested having some form of whistleblower protection.

Participants supported streamlining recruitment of international workers to address staffing shortages, while acknowledging some expressed concerns about how language barriers and differences in training could affect quality of care. They called for limited reliance on temporary foreign workers in LTC (based on concerns that these workers may be asked by employers to do work outside their scope of practice and would be unlikely to refuse due to fear of losing employment and/or being deported). Participants also suggested reducing reliance on agency staff (based on concerns with respect to the accountability of agency staff as well as quality and continuity of care).

We heard from many participants that the LTC workforce faces significant challenges related to job stability, wages, training as well as staff shortages. Participants called for a variety of measures to improve staffing in LTC, and in turn, quality and safety of care for LTC residents. Examples include:

There were calls to not only to look at resident to staff ratios, but also to consider the other types of care that need to be provided, such as recreational care and mental health support. It is important to have access to a range of specialized providers to support multidisciplinary, team-based care that includes professionals such as:

At a more micro-level, other common quality and safety concerns for LTC residents that were raised include nutrition and diet (such as access to safe foods for people with celiac disease or food allergies) and the overall quality of food, as well as things like frequency of brief changes and baths, which ties back to adequate funding and staffing.

For participants, quality of care also included improvements to LTC home infrastructure, such as the need for:

Many participants wanted to see more leadership from the federal government and a uniform approach across Canada with respect to the quality and safety of LTC. Some suggested that this could be achieved by including LTC in the Canada Health Act or by mandating the new national LTC standards (developed by the CSA Group and the HSO). Many suggested that federal funding to provinces and territories should be tied to implementation of the new standards or meeting other performance metrics aimed at improving quality and safety in the sector. Others felt the opposite way and did not see the need for further federal involvement in LTC. Instead, they wanted to see the federal government increase funding to provinces and territories so they can make improvements according to their own priorities.

LTC operators, while supportive of standards for the most part, emphasized the need for adequate and sustainable funding to support:

Some participants encouraged reflection on whether LTC should be delivered uniquely by not-for-profit organizations noting that the pursuit of profits can come at the expense of quality care. No matter what the sentiment, however, it was acknowledged that the current provision of LTC by provinces and territories includes the public non-profit and for-profit sectors, and such a change would be a complex undertaking.

Principle 5

Transparency: facilitates data collection to support continuous measurement, innovation, and improvement and to evaluate progress toward care and accommodations that balance safety and quality of life, and reporting back to people in Canada on a regular basis

Transparency and accountability were topics of paramount importance among participants as a means to ensure value for public dollars spent on LTC. Stakeholders called for better information and reporting on the state of LTC in Canada. There are existing efforts to collect data across the supportive care sector and report back to people in Canada, but there are significant gaps.

In terms of how public reporting could be enhanced, nine common suggestions arose:

Current quality and evaluation metrics in long-term care homes are entirely clinical in nature. Moving forward, it is imperative that each province and territory develop (and place greater emphasis on) quality of living indicators, as defined by residents themselves. What factors make a good home or living experience for residents? Ask them!

‒ Ontario Association of Residents' Councils

While most participants support increased reporting and oversight mechanisms, some expressed caution that too much of this can take staff time away from providing care.

A number of participants referenced the need for a pan-Canadian public report on the state of LTC. There was also a call for a framework and action plan that will articulate a strong vision for quality of life in LTC and tools for measurement.

Overall, participants highlighted the importance of ongoing collaboration, consultation, and communication with provinces and territories, LTC operators, Indigenous Peoples, LTC residents, families, and staff, and other stakeholders throughout implementation and decision-making processes.

Conclusion

We thank all who participated in the engagement on the development of the Safe LTC Act. The feedback received from stakeholders, experts, provincial and territorial governments, residents and family caregivers, health care workers, and Indigenous Peoples, was wide-ranging and very informative. The perspectives are being taken into consideration as we work to table the legislation by the end of 2024. We remain committed to ongoing collaboration and discussions with all partners as we work to improve LTC in Canada, so all people in Canada may have access to high quality and safe care no matter where they live.

Appendix A: List of questions, online questionnaire

Preliminary question for respondents identifying as Indigenous and organizations serving Indigenous communities only:

Based on your knowledge and experiences, what does it mean to support culturally safe and appropriate LTC services for First Nations, Inuit and/or Métis Peoples?

Question 1:

How should governments and stakeholders cooperate to improve the quality and safety of LTC?

Question 2:

How can governments and stakeholders cooperate to help foster the implementation of the new national LTC standards?

Question 3:

How can governments and stakeholders cooperate to address health human resources challenges in LTC, including staff retention and recruitment?

Question 4:

How should we enhance public reporting on LTC to strengthen transparency and accountability in the sector?

Question 5:

What type of information would you like to see in a Pan-Canadian public report on LTC?

Question 6:

Please share any additional thoughts you have on LTC.

Appendix B: Data on respondent demographics, online questionnaire

Individuals

Figure
Self Identification
Self-Identification Count
Refugee 5
Recent immigrant 24
Veterans 85
Indigenous (First Nations, Métis and/or Inuit) 165
A member of an official language minority community 192
Prefer not to answer 209
A member of the 2SLGBTQI+ community 222
A member of an ethno-cultural or racialized group 227
Person with a disability 578

Notes: respondents could select more than 1 option; chart does not include "none of the above" entries (54.9% of respondents selected this option)

Figure
Location
Location Count
Other 21
Prince Edward Island 29
Prefer not to answer 28
Newfoundland and Labrador 54
New Brunswick 85
Nova Scotia 86
Saskatchewan 98
Manitoba 262
Alberta 364
Québec 414
British Columbia 796
Ontario 2419

Note: This chart excludes the Yukon, Northwest Territories and Nunavut as there were fewer than 10 respondents from each of the territories.

Figure
Situation
Situation Count
LTC resident 30
Volunteer in a LTC setting 211
Paid LTC provider 447
Caregiver 946
Other 1052
Spouse or family member of a LTC resident 1069
None of the above/Prefer not to answer 1538

Note: respondents could select more than 1 option

Figure
Age
Age Count
18 to 24 30
25 to 34 209
35 to 44 432
45 to 54 594
55 to 64 1042
65 to 69 722
70 to 74 661
75 to 79 505
80 to 84 236
85 to 89 74
90 to 94 16
95 to 99 1
Figure
Gender Identity
Gender Count
A woman 3559
A man 775
Prefer not to answer 151
Non-binary 25
Two-spirit 7
Transgender 8
Another gender 3
Figure
Size of Community
Size of Community Count
Large urban population centre with a population of 100,000 or greater 2512
Medium population centre with a population of between 30,000 and 99,999 810
Small population centre with a population of between 1,000 and 29,999 790
Rural or remote setting 349
Do not know/Prefer not to answer/Other 148

Organizations

Figure
Organization Type
Type Count
Prefer not to answer 10
Academic 14
Indigenous organization, community or government 30
Other 41
Government (federal, provincial or territorial, municipal) 47
Caregiver 48
Community group 70
Care or community service organization 80
Advocacy Group 91
Care provider organization 113
Health 159

Note: Respondents could select more than 1 type

Figure
Service Location
Location Count
Nunavut 12
Other 12
Northwest Territories 15
Yukon 16
Newfoundland and Labrador 25
Prince Edward Island 26
Nova Scotia 33
Saskatchewan 34
New Brunswick 34
Manitoba 42
National 59
Alberta 64
Québec 77
British Columbia 103
Ontario 111

Note: Respondents could select more than 1 service location

Appendix C: List of participating organizations

Pre-engagement and roundtable participants

Bilateral and ad hoc meetings

Online questionnaire respondents

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