Residents have different rights across the country, so why are those rights routinely violated?
COVID-19 has highlighted the challenges in facilities that care for the infirm elderly and officials “have much to consider to shore up the cracks in the system,” according to Ontario's long-term care minister, Merrilee Fullerton.
Canadians have known for decades “these issues were mounting, but they went unaddressed,” she admits. Residents have been out-of-sight, out-of-mind.
A long-term facility is also known as a nursing home, a residence for people who can no longer live independently and require high levels of care.
Long-term care residents have the same rights as all Canadians. Legally, no one can be discriminated against for age or ability. In long-term care, a resident may be under protective guardianship or trusteeship, with responsibility for their care relinquished to another person when they cannot comprehend their rights or advocate for them. This can feel like rights being taken away, and residents can be taken advantage of.
Even before the pandemic, there were stories about facilities neglecting residents and being poor employers. Are these anomalies or the norm? The uncertainty led most people interviewed for this piece to request anonymity, fearing reprisal against family in care or from employers.
Residents
There are more than six million seniors (65-plus) in Canada; nearly five per cent of them, 300,000, live in long-term care homes. More than 60 per cent of long-term care residents have some form of dementia. The Public Health Agency of Canada estimates that, by 2031, the number of Canadians with dementia will double.
Legislation
The most important component of long-term care is health services. Canadians tend to believe health care is a constitutional right. However, the Canadian Charter of Rights and Freedoms does not grant that right. Section 7 grants “the right to life, liberty and security of the person” that cannot be denied “except in accordance with the principles of fundamental justice.” Challenges to the Charter in the context of health care have argued rights are violated by long wait times or denial of treatment not covered by public health insurance. The counter-argument allows government to violate rights as long as it does so in a “just” manner.
The federal legislation providing Canadians with publicly funded health care is the Canada Health Act. It establishes the conditions by which the provinces and territories receive federal funding to provide physician and hospital services. For the most part, the act does not cover services in long-term care facilities. They are paid for by the provincial or territorial government, while room and board are usually paid by the individual, in private and public facilities. In some cases, provinces and territories subsidize those costs. The act does not prohibit privately funded health-care services.
Rights in care
Long-term care in Canada is not a “system” — it is a patchwork of legislation and uneven care. Facilities are provincially or territorially regulated. Legislation includes acts, bills of rights, standards of care or guidelines. In general, residents have the right to: be treated with respect and dignity; have pain and symptoms managed and care delivered in privacy; be informed about treatment options; file a complaint; have someone speak on their behalf and have their advanced care directive recognized, including a “do-not-resuscitate” order. Residents also have the right to refuse treatment or end their life and request medical assistance in dying.
Provinces include additional rights, such as the right to receive visitors privately in B.C., Quebec and Newfoundland and Labrador. In Saskatchewan, residents are to be spoken to kindly while care is delivered in “home-like” settings. In Nunavut’s three facilities providing high-level care, residents are ensured care that maintains their sense of independence and well-being and applies Inuit Qaujimajatuqangit (traditional knowledge).
Facility inspections should confirm residents receive care — with rights observed — according to legislation. However, in most provinces, inspections happen once or twice a year and are usually announced. In Nova Scotia, inspections are unannounced and done at least twice a year. Until Dec. 1, 2019, B.C. inspections were solely triggered by complaints. Ontario’s Ministry of Long-Term Care adopted a risk-based inspection framework in 2018 that ensures “every home is inspected at least once, and…beyond that, [they] can prioritize homes based on risk.”
Reality
On paper, residents are treated well. The reality can feel vastly different, with residents’ right to privacy and dignity the main casualty. Facilities are chronically under-staffed. It’s hard work that doesn’t pay well. Some facilities offer only part-time work, so caregivers work at multiple facilities to garner a full-time wage, but benefits are minimal. They don't have paid sick leave, making facilities vulnerable to the spread of viruses.
Front-line workers are central to ensuring patients’ rights — particularly privacy and dignity. They may not be aware that long-held practices actually violate residents’ rights, but practices have become normalized so they don’t question it. One interviewee suggested that bodily functions are viewed more pragmatically by some caregivers; in her mother’s case, the privacy curtain was rarely drawn during diapering, despite facility and legislative assurance of privacy. Dignity becomes impractical when rooms are crowded and there’s not enough space to move around.
Beyond low pay for caregivers, co-ordination of care seems at odds with care promised by legislation. In most facilities, private and public, there is not enough funding for staff ratios to be high enough to tend well to infirm people who move slowly or can’t dress or feed themselves. Time is always an issue. A former Ontario care worker said having only 15 minutes to get an immobile or resistant patient up for the day, diapered, washed and fed means rushing. Urgency can mean unintentionally hurting someone by paying too little attention while moving the patient. A fragile woman had her shins broken by staff who had raised the bed rails without noticing their patient’s legs were hanging over the bedside. Staff frustration and impatience have also resulted in patients being injured deliberately. Family members have reported hitting or punching, pulling on limbs or force-feeding when the patient can’t eat quickly enough.
Rushing also means lack of oversight; a family member described their parent’s residence where kitchen staff deliver meal trays to patients unable to feed themselves and busy caregivers don’t show up to feed the patient before kitchen staff return to remove the tray. Rights come second in the rush to get through the day.
Supporting a dementia patient requires taking time to measure temperament, which changes as their condition advances. Brenda Fiske, of Edmonton, was satisfied with the care her loved one received in the second facility in which she resided. Her mother’s dementia had reached the point of her being uncommunicative, but Fiske saw that staff knew how to approach her, which meant she co-operated with them. There were annual family meetings to discuss concerns as they arose. She did not feel her mother’s rights were neglected, but rather that her mother could not understand that she had rights.
Many people don’t fully realize that the parent they knew is not the person they visit; that parent will never be the same and no level of caregiving will restore them, Fiske says. Desire for what can never be is devastating and may interfere with communication, the thing needed most.
Solutions
Rights and level of care are intertwined; rights can’t be ensured when so much else is wrong. It’s clear that change is needed. Federal Retirees member Oriana Trombetti, retired general counsel for the federal Department of Justice and now board chairwoman of the Eldercare Foundation of Ottawa, is unequivocal:
“Governments have not invested enough to protect vulnerable seniors living in care,” she says. “Remuneration and training for those working in homes is insufficient. Inspection of homes has not been carried out [consistently.] Change is required now. National standards and additional funding would go a long way to improving the situations for seniors living in long-term care in Canada.”
Those interviewed have ideas for remediation, including consistency in staffing and training, volunteer programs, better system-management, an end to warehousing vulnerable seniors, group homes rather than locked wards and a return to multi-generational living.
Governments have been spurred by the pandemic and patient-rights advocates to respond to the problems within long-term care — for now, at least. They have spent money and promised more, redesigned funding models, amended legislation to increase staffing, promised to improve training for health-care aides and to provide more spaces.
B.C. Health Minister Adrian Dix said the government will do as it always has, “be methodical, be prudent, and to test out what [it’s] doing before [it] moves onto the next step.” Ontario’s Premier Doug Ford promised to “turbo-charge the development of long-term care beds.” In November 2020, he announced new commitments to long-term care facility residents, including an average of “direct care of four hours a day per resident,” a standard to be met by 2025. He also committed to recruiting and educating tens of thousands of personal support workers and nurses. The province will invest nearly $2 billion over five years to increase care capacity.
Whichever promises are kept, and whatever changes are made, will improve the living conditions in long-term care, and that, in turn, should help assure residents’ rights. Will it be enough?