PSWs and Demand for Care

Home care is often credited with providing support that allows clients to remain at home, contributing to reduced strain on hospitals and LTC homes; however, resources to provide home care are not always adequate, given estimations that up to 23 per cent of Ontarians admitted to LTC could remain at home if appropriate support was available (Canadian Institute for Health Information, 2017). An Ontario study also suggests that providing equivalent care at home is estimated at 20 times less expensive than hospital care, although the home care sector receives 5% or less of the total provincial health care budget and thus rations care based on available funding rather than need (Home Care Ontario, 2018). A July 2020 poll reported that 91% of adults over 55 would prefer to age at home for as long as possible (Home Care Ontario, 2020). As such, both economic and person-centered goals support the need to provide adequate PSW support for the safe delivery of home care (Saari et al., Reference Saari, Xiao, Rowe, Patterson, Killackey and Raffaghello2018; Williams et al., Reference Williams, Challis, Deber, Watkins, Kuluski and Lum2009). PSWs are an important part of Ontario’s healthcare infrastructure, caring for vulnerable populations including our growing population of adults 65 years of age and older (Canadian Institute for Health Information, 2017). Despite their key role in providing home care services to older individuals living in the community, PSW work has been regularly and systemically undervalued (Afzal, Stolee, Heckman, Boscart, & Sanyal, Reference Afzal, Stolee, Heckman, Boscart and Sanyal2018; Zagrodney & Saks, Reference Zagrodney and Saks2017). Home care PSWs (who are disproportionately female, older, and racial minorities) work under precarious employment conditions, with low wages, irregular scheduling, part-time positions, and no extended health benefits (Zagrodney & Saks, Reference Zagrodney and Saks2017). Research cites these employment conditions to explain why PSWs leave the workforce (Barken et al., Reference Barken, Denton, Sayin, Brookman, Davies and Zeytinoglu2018; Keefe, Martin-Matthews, & Legare, Reference Keefe, Martin-Matthews and Legare2011; Lee & Jang, Reference Lee and Jang2016; Lum et al., Reference Lum, Sladek, Ying and Holloway Payne2010; Panagiotoglou, Fancey, Keefe, & Martin-Matthews, Reference Panagiotoglou, Fancey, Keefe and Martin-Matthews2017; Sims-Gould, Byrne, Craven, Martin-Matthews, & Keefe, Reference Sims-Gould, Byrne, Craven, Martin-Matthews and Keefe2010; Zeytinoglu & Denton, Reference Zeytinoglu and Denton2006; Zeytinoglu, Denton, Plenderleith, & Chowhan, Reference Zeytinoglu, Denton, Plenderleith and Chowhan2015). In 2014, the Ministry of Health and Long Term Care estimated PSW turnover to be 60 per cent annually (Ministry of Health and Long Term Care, 2014, 2016). Home care PSW’s work hours vary depending on the needs of clients, and can be modified with little notice when client circumstances change (Zeytinoglu et al., Reference Zeytinoglu, Denton, Plenderleith and Chowhan2015). A further aspect of poor PSW working conditions is travel, with unpaid time to and from client homes, no compensation for the cost of operating a vehicle or taking public transit, and no allowance for hazardous weather conditions (Fitzpatrick & Neis, Reference Fitzpatrick and Neis2015; Lippel & Walters, Reference Lippel and Walters2019) Schedules that are disrupted by last-minute cancellations and additions and include large gaps in the middle of a day, together with obligations to keep certain days and times free for potential client need, reduce worker satisfaction (Lum et al., Reference Lum, Sladek, Ying and Holloway Payne2010; Panagiotoglou et al., Reference Panagiotoglou, Fancey, Keefe and Martin-Matthews2017). PSW retention has been evaluated from numerous angles, yet Ontario (as well as other jurisdictions) continues to have an acute shortage of PSWs. Pandemic-era wage increases and bonuses have been introduced by governments and industry in efforts to recruit, retain, and re-engage workers; however, these reactionary measures fail to address a myriad of other issues, such as insecure part-time schedules and unpaid sick time (Standing Committee on the Legislative Assembly, 2020).

Worker shortages are particularly concerning given that demand for PSWs will only increase as the population ages. By 2030, it is projected that people over the age of 65 will account for approximately 22 per cent of Canadians, up from 17 per cent in 2018 (Statistics Canada, 2019). Echoing population demographics, home care clientele are also increasingly older. During the 2009–2010 business year, approximately 325,910 Ontarians 65 years of age and older made up 54 per cent of all publicly funded home care service users, increasing to 459,495 or 63 per cent of all publicly funded home care service users by the end of 2015–2016 (Home Care Ontario, n.d.). Among all Ontario home care clients, an estimated 15 per cent are children, 20 per cent are adults 18–64 years of age, and 60 per cent are 65 years of age and older, with palliative clients comprising the remaining 5 per cent (Home Care Ontario, 2018).

A Case for Regulation

PSW work conditions are interwoven with client safety. This has become increasingly evident during the COVID-19 pandemic. Health care workers face challenges such as: insufficient personal protection equipment; increased risk of exposure, illness, and even death; stress and exhaustion; and ongoing violence, conditions described in The Lancet prompting authors to state unequivocally, “…healthcare workforce safety is patient safety. One cannot exist without the other” (Shaw, Flott, Fontana, Durkin, & Darzi, Reference Shaw, Flott, Fontana, Durkin and Darzi2020, para.8).

Bearing worker and client safety inter-relatedness in mind, supporting and protecting the workforce requires a comprehensive understanding of PSW work within the health care system. A lack of data pertaining to PSWs suggests that we cannot know what we might (or might not) be missing when it comes to home care client safety and PSW-provided care.

LHIN tracking mechanisms and client-based record keeping miss tracking data as they relate to home care worker presence or involvement in adverse events such as falls, medication errors, and injury (Ontario, Commission for the Long-Term Care Homes Public Inquiry, 2018). There is also no aggregate measure or transparent reporting of theft, fraud, or other types of incidents involving PSWs providing home care. However, a paucity of information should not be interpreted as reflecting the absence of these issues. The 2015 National Survey on the Mistreatment of Older Canadians reported that the prevalence of abuse (physical, sexual, emotional, and financial) and neglect among older Canadians was 8.2 per cent in the previous year (McDonald, Reference McDonald2018). Paid caregivers were found to be responsible for just 1 per cent of physical abuse incidents, zero instances of sexual, financial, or psychological instances, and 9 per cent of neglect instances (McDonald, Reference McDonald2018). In all types of abuse, these figures were eclipsed by abuse by adult children and grandchildren, spouses, and siblings (McDonald, Reference McDonald2018), making the role of PSWs and other staff in identification and reporting of suspected abuse a key safety measure. Although these figures reflect well on paid care providers, some differences do exist between the prevalence study sample (55 years of age and older and described as “cognitively intact”) and home care clientele, the majority of whom are adults 65 years of age and older. Response bias (e.g., lower participation in answering phone calls) or other factors may also affect the transferability of the prevalence study data.

Complaint processes and tracking further impede a full understanding of safety and PSW-provided home care. Home care complaints and investigation involving PSWs may be addressed by SPOs, LHINs, the Ministry of Health, the patient ombudsman, or police, in criminal investigations. Although estimating the prevalence of abuse among home care recipients is thus complicated, some additional information contributes to our knowledge:

1. 1. The Ontario Patient Ombudsperson reported 226 complaints in 2018 related to LHIN Home and Community Care, of which 43 per cent related to personal support services; however, the majority of these related to service levels and consistency (Patient Ombudsman, 2020). For LHIN-coordinated home care, in the recent periods June 2018 to June 2019 and June 2019 to June 2020, the patient ombudsman received “less than five complaints related to personal security or safety” (G. White, personal communication, September 30, 2020).

2. 2. Clients may turn to legal clinics such as Advocacy Resource Centre for the Handicapped (ARCH) Disability Law Centre or the Advocacy Centre for the Elderly (ACE). ACE Lawyer Jane Meadus presented the following information at a June 13, 2020 parliamentary committee meeting regarding home care legislation:

   We take over 4,000 calls annually on individual matters on a variety of seniors’ issues. We get many calls regarding home care. Examples of those issues would be inaccessibility to home care due to wait-lists, insufficient care, poor quality of care, staff not showing up, inconsistent staffing. (Standing Committee on the Legislative Assembly, 2020, p. M-105).

3. 3. Although not specific to paid caregivers, Statistics Canada reports that older adults (not living in an institution) with a cognitive or mental health disability are as much as four times more likely to have reported abuse by a caregiver (Statistics Canada, 2014).

4. 4. There is no way to assess the amount of alleged or actual health sector crime that occurs, based on what is reported in media (i.e., PSW assault, sexual assault, fraud, and theftFootnote ⁴ ).

In a decentralised home care system with no tracking mechanism for PSWs and a lack of standard data collection, it is difficult to fully assess abuse, neglect, or events such as falls or missed visits in PSW-provided home care. This general gap in available information draws attention to the need to better understand the context of PSW-provided home care.

During the COVID-19 pandemic, the plight of precariously employed health workers prominently entered the public sphere of awareness. Issues such as PSWs working for multiple employers and the tension between health care workers’ duty to care and their rights to safe work conditions received fresh attention in Canada (Gruben & Bélanger-Hardy, Reference Gruben, Bélanger-Hardy, Flood, MacDonnell, Philpott, Thériault and Venkatapuram2020). As unregulated care providers, PSWs do not face the same legal obligations as regulated professionals, such as nurses or physicians, yet are often expected to adhere to the same ethical standards (Gruben & Bélanger-Hardy, Reference Gruben, Bélanger-Hardy, Flood, MacDonnell, Philpott, Thériault and Venkatapuram2020). The unregulated status of PSWs has persisted despite years of discussion and debate about personal support work as a profession, and types of regulation (Kelly & Bourgeault, Reference Kelly and Bourgeault2015b) including the 2006 Health Professions Regulatory Advisory Council (HPRAC) rejection of PSW as a profession (Health Professions Regulatory Advisory Council, 2006). The Ontario Personal Support Workers Association (OPSWA), a voluntary PSW association for paying members, has recently been campaigning for self-regulation for PSWs. A July 22, 2020 newsletter from OPSWA states:

Also, in July 2020, OPSWA published a Call to Action, informing members they were in the “home stretch for Regulation, Recognition and Professional Respect” (Ontario Personal Support Workers Association, 2020a, para.1). While promoting self-regulation, OPSWA simultaneously provides access to liability insurance and other associated benefits such as annual police checks for its paying members. New sections of the Web site (https://ontariopswassociation.com/) added between July 22 and August 5, 2020 offer different membership types, such as organisation-level memberships for agencies at the regional, provincial, and national levels. The OPSWA Web site also contains a copy of their bylaws, approved July 30, 2020.

The OPSWA has suggested implementing an oversight body (The Personal Support Workers Institute of Canada) and utilizing their membership body, OPSWA, to facilitate PSW self-regulation. In their proposal for self-regulation (accessed July 22, 2020), the OPSWA stated: “[OPSWA] has established an independent and separate Board of Directors, President and administrative body prepared to monitor complaints and enforce discipline which will be known as The Personal Support Workers Institute of Canada” (Ontario Personal Support Workers Association, n.d.). However, a previously available page providing details about how OPSWA proposed to handle complaints using a separate board (formerly published at http://www.ontariopswassociation.com/complaints-discipline) was no longer available, at the time of writing (September 11, 2020). According to the Federal Corporation Web site, The Personal Support Workers Institute of Canada was registered (in the name of Ian DaSilva, OPSWA’s Director of Operations) as Corporation #11471422 with Corporations Canada on June 18, 2019 (Federal Corporation, n.d.). If and how PSW regulation is constructed will be a key component in safe home care provision: one that health system and policy experts might wish to evaluate, given OPSWA’s claim of being in the “home stretch” towards self-regulation (Ontario Personal Support Workers Association, 2020a). Although OPSWA has expressed an interest in both the registration and regulatory aspects of self-regulation, greater separation of these roles may be needed to ensure true independence and avoid any conflict of interest, real or perceived.

In lieu of a legally binding framework, Gruben & Bélanger-Hardy (Reference Gruben, Bélanger-Hardy, Flood, MacDonnell, Philpott, Thériault and Venkatapuram2020) propose guidance for PSWs already occurs in the following four forms:

1. 1. Education standards (e.g., Kelly & Bourgeault, Reference Kelly and Bourgeault2015a)

2. 2. Regulated professionals (e.g. nurses) ensuring PSW competency for delegated controlled acts (e.g., Barken, Denton, Plenderleith, Zeytinoglu, & Brookman, Reference Barken, Denton, Plenderleith, Zeytinoglu and Brookman2015; Denton, Brookman, Zeytinoglu, Plenderleith, & Barken, Reference Denton, Brookman, Zeytinoglu, Plenderleith and Barken2015)

3. 3. Supervision through the employer (e.g., Afzal et al., Reference Afzal, Stolee, Heckman, Boscart and Sanyal2018; Lum et al., Reference Lum, Sladek, Ying and Holloway Payne2010)

4. 4. Association (e.g., Ontario Personal Support Workers Association) guidelines or codes of conduct (Gruben & Bélanger-Hardy, Reference Gruben, Bélanger-Hardy, Flood, MacDonnell, Philpott, Thériault and Venkatapuram2020).

However, our view is that all the forms of guidance presented by Gruben & Bélanger-Hardy (Reference Gruben, Bélanger-Hardy, Flood, MacDonnell, Philpott, Thériault and Venkatapuram2020) have limitations or caveats, and that some limitations are of elevated concern for home care. Each of these four guidance topics are discussed in the following sections.

Next Steps: Policy and Research

As discussed, education standards, regulated staff delegating controlled acts, supervision through employers, and guidelines created by associations each have limitations, many of which are more apparent in the home care context than in LTC. In light of these limitations, we draw attention to knowledge gaps and explore how policy might address risk and improve safety in home care delivered by PSWs.

There are clear knowledge gaps in what is known about the safety of PSW-provided home care in Ontario. Little research has considered the prevalence of client abuse or neglect by paid home care workers such as PSWs (McDonald, Reference McDonald2018). Studies that consider physical injury (e.g., Doran et al., Reference Doran, Blais, Harrison, Hirdes, Baker and Lang2013) do not account for other events that may occur in PSW-provided home care, such as verbal abuse or theft. The taxonomy of safety (such as adverse events) often fails to include aspects such as near misses (Lang & Edwards, Reference Lang and Edwards2006). Research about PSWs regularly fails to differentiate between in-home and institutional workers (e.g., in LTC homes), or PSWs and other in-home workers such as nurses and occupational therapists (e.g., Denton, Zeytinoglu, & Davies, Reference Denton, Zeytinoglu and Davies2002; Gilmour, Reference Gilmour2018; Home Care Sector Study Corporation, 2003). In one article investigating theories of team-based person-centered care, unregulated home care providers such as PSWs were not considered separately; instead, their role was cited as likely “inherent” to the disciplines who supervised these workers (Giosa, Holyoke, & Stolee, Reference Giosa, Holyoke and Stolee2019). However, PSWs’ unregulated status is unique, and regularly mismatched with the level of care that these unsupervised workers provide. Regulated professionals (nurses and therapists) in Ontario have described problems with delegating acts or transferring tasks to unregulated care providers, such as training that occurs in usually just one visit, lack of skill to identify changes or assess new issues that arise, and limited opportunity to monitor delegated acts on an ongoing basis (Denton et al., Reference Denton, Brookman, Zeytinoglu, Plenderleith and Barken2015).

Investigation of PSW care and client safety in research studies seldom goes beyond physical outcomes or exploration of events that occur during the provision of care, and is remiss in not considering how the absence of professional regulation of PSWs may impact research into client safety. Research looking at a single aspect of care provision fails to encompass the risk potential in the “policy-system-worker-client” integrated actuality. Policy-oriented literature in this area also falls short of the mark, often approaching issues from economic or organisational standpoints that miss delving into PSW work and its relation to the safety of home care clients (e.g., Forbes & Edge, Reference Forbes and Edge2009; Peckham et al., Reference Peckham, Rudoler, Li and D’Souza2018; Wojtak & Stark, Reference Wojtak and Stark2016). The accountability of home care structure and delivery is a long-standing concern (e.g., Coyte & McKeever, Reference Coyte and McKeever2001). One study found that although some accountability existed through regulations such as the Occupational Health and Safety Act (Ministry of Labour, 1990), home and community care organisations were primarily held accountable through limited means such as expenditure tools (Steele-Gray, Berta, Deber, & Lum, Reference Steele-Gray, Berta, Deber and Lum2014). Financial accountability and service quantity targets are priority metrics in SPO contracts, and there were almost no requirements or performance measures in place for the quality of care provided to vulnerable populations (Steele-Gray et al., Reference Steele-Gray, Berta, Deber and Lum2014).

Some portions of the Home Care and Community Services Act, such as the client Bill of Rights (Ministry of Health and Long-Term Care, 1994) address home care services yet do not address PSW work specifically. The Home Care and Community Services Act also outlines certain elements of the service agreements between LHINs and SPOs, but tends to focus on higher level administrative aspects as opposed to directives about the act of caregiving (Ministry of Health and Long-Term Care, 1994). Legislation has also been criticized for failing to deal with funding and capacity of home care services (Sheppard, Reference Sheppard2019). How these issues will play out in Ontario’s pending Connecting People to Home and Community Care Act (Ministry of Health and Long-Term Care, 2020) regulation, and the full impact of the recent Connecting Care Act (Ministry of Health and Long-Term Care, 2019) remain to be seen. Political party mandates after provincial elections or crises may prompt health system change, yet frequent overhaul may unnecessarily increase costs or result in revolving policy modifications. Although policy should respond to changing population needs, it is important to balance this with stability in the system and provide some level of security to enable SPOs to plan for ongoing service provision and the necessary resources. This challenge may be addressed through evidence-based, non-partisan research, organisational planning, and policy development.