Carol Wodak feels like a soldier living through a war. Eight years ago her mother had her first stroke. Suddenly her mother could no longer remember how to get dressed and couldn’t be trusted to cook a meal or take a bath without potentially harming herself. Since then, Wodak has battled Alberta’s long- term care system. She says she is so haunted by the harm the system has inflicted on her mother that she feels like she’s suffered post-traumatic shock. She’s full of anger because the system that was supposed to care for her mother so resoundingly failed her.
The first shock was financial. Wodak discovered that although her mother couldn’t look after herself, she wasn’t considered a high enough needs senior to be put into a nursing home. So Wodak and her husband had to spend $3,000 a month for her to live in a private group home where she could receive 24-hour care. However, the care was substandard. Her mother often injured herself at night when she tried to get out of bed on her own, because there weren’t enough staff to supervise her. Wodak ended up moving her mother through a series of group homes, but found the care to be similar at each.
Six years later, Wodak’s mother was deemed to have high enough needs to qualify for a nursing-home bed. Wodak thought her mother would finally be well taken care of, but her belief soon disappeared. Shortly after her mother arrived at the Strathcona Care Centre, Wodak says staff asked her to take her mother’s rings. She was told her mother had been banging her hands against the table, causing a commotion. Wodak found out later her mother banged her hands because she wanted someone to take her to the bathroom. At one point Wodak showed up to visit, and her mother was “rocking back and forth clearly in agony and saying, ‘Oh God, help me, help me,’” says Wodak. “I took her into the bathroom. That diaper was so soiled and so wet that it dripped all over the floor. Her bottom was just skinned.”
In long-term care, her mother was put on as many as six tranquilizers and anti-psychotics at one time. “I know now the tranquilizers and other drugs are given not because they can fix anything, not because they can make her feel better, but because they will control the behaviours that require special care,” says Wodak.
Even the most basic care was sometimes not given. Once when Wodak came to visit, she found her mother slumped in her wheelchair. She was drooling, her feet were swollen and her speech slurred. Wodak recognized the signs of a stroke. The staff hadn’t noticed, says Wodak. “Nobody paid any attention.”
Wodak is convinced hundreds, maybe even thousands, of other families in Alberta have gone through similar experiences. And she desperately hopes change will finally happen in the province, especially in light of a scathing report by the auditor general.
In his May 2005 audit of the province’s long-term care system, Auditor General Fred Dunn found the system “requires significant improvement.” After visiting 25 nursing homes around the province with a team of investigators, Dunn discovered that under 70 per cent of facilities met the Basic Service Standards for Continuing Care Centres. The province wrote the Basic Standards in 1995 to update the provincial Nursing Homes Act. However, Dunn found the standards are now outdated. According to his report, long-term care residents’ needs are now approximately 35 per cent higher than in 1990, necessitating a higher level of care.
“We saw numerous examples of facilities not meeting the Basic Standards,” wrote Dunn. “No facilities in our sample met all 23 criteria, and only three criteria were fully met by all facilities.”
“I know now the tranquilizers and other drugs are given not because they can fix anything, not because they can make her feel better, but because they will control the behaviours that require special care.”—Carol Wodak
The auditor general’s report came as no surprise to long- term care advocates, including Wodak, who have been making impassioned pleas to the government for years to improve the situation for some of Alberta’s most vulnerable citizens. In 2001, the now-defunct advocacy group Families Allied to Influence Responsible Eldercare (FAIRE) released a report called The Shame of Canada’s Nursing Homes documenting the state of long-term care across the country. The report included numerous cases of abuse and neglect in Alberta nursing homes, including 12 preventable deaths, as examples of the kinds of problems happening throughout Canada. One resident was found dead in a field after wandering out of the facility. Another died after not receiving proper treatment for a gangrenous foot. The report contained graphic photos of abused and neglected residents, including photos of a woman who had suffered a concussion after being dropped out of a mechanical lift, residents who had been assaulted by other residents, female residents left with their buttocks and mid-section exposed in public, a man tied into his wheelchair and residents with massive bruising from injuries sustained after falling because they were overmedicated. In 2003, FAIRE made a presentation to government, including all the details from the 2001 report. There was no response from government.
In the last two years, several incidents at long-term care facilities received a lot of media attention. In 2004 police charged a 39-year-old caregiver in a Calgary long-term care facility with sexually assaulting a resident in her 90s. In another case 90-year- old Jennie Nelson died of burns from a scalding hot bath at an Edmonton nursing home. This November a fatality inquiry will examine her death. Eighty-six-year-old Marie Geddes, a diabetic living in the Bethany Long-Term Care Centre in Camrose, went on a hunger strike to protest low staffing levels in the facility. Her hunger strike was cut short after only four days, and Geddes passed away in May.
Tom McMeekin, a former provincial court judge forced into a long-term care facility because of his multiple sclerosis, sent a 1,500-signature petition to the legislature demanding more staffing. After many years as a respected member of the bench, McMeekin suddenly found himself one of thousands of long- term care residents who only receive a bath a week. He says he was often “in agony” waiting to be taken to the bathroom. McMeekin currently pays to have someone come in and give him a couple of extra baths a week in order to maintain a level of personal hygiene most of us take for granted. McMeekin hopes the province will put more money into the system.
“So many people in long-term care aren’t capable really of standing up for themselves. They’re just flotsam and jetsam in the whirlpool of life I suppose, and they’re just pushed around as the nursing home wants. Now they’ve cut the staff down to such a great degree that they don’t have the people to pay much attention to residents’ concerns,” McMeekin says. “I think residents have to be reasonably fair in terms of trying to adjust to the situation, but at the same time, should I have to be put through this sort of thing bearing in mind I’ve contributed to society over all my life?
“The bottom line is money,” says McMeekin. “The basic issue is does society feel they should look after their aged and disabled or not, and if so, to what extent? And if it’s just warehousing them then that’s basically what the staffing’s for, because that’s all it’s capable of doing.”
Despite the concerns expressed by thousands of citizens, the Klein government denied any widespread problems in the system until the auditor general’s report was released. The damning report sparked a public outcry against conditions in long-term care.
Since the report became public, Health and Wellness Minister Iris Evans has promised to put in place new continuing care health service standards by 2006. Government spokesperson Howard May says the government is committed to improving the system. “The auditor general came out with a scathing criticism of long- term care. The minister took full responsibility for it and we’re doing a bunch of things to address that,” says May. The ministry set up an MLA task force to consult stakeholders and suggest new standards. In September, the committee released their report, which included draft recommendations to improve staffing levels and training, ensure that residents receive proper medications and put in place new measures to monitor compliance with regulations. However, it remains to be seen whether the government will implement these recommendations.
Dunn’s report supports what McMeekin says about low staff-to- resident ratios and the limited amount of care for residents. Under the Nursing Homes Act, each resident must receive 1.9 hours of one-on-one care each day. Of this, 22 per cent, or 25 minutes, is supposed to be delivered by registered nurses (RNs). But Dunn reports licensed practical nurses (LPNs) provide 43 per cent of the care that is supposed to be performed by RNs. There seems to be a move toward replacing the more highly trained RNs with LPNs, who have a lower education and skill set. Many nurses find this trend troubling. According to Dunn’s report, “the Basic Standards do not contemplate the use of LPNs to meet requirements for nursing hours.” Dunn also reports that the least trained staff—personal care attendants—provide 70 per cent of all care to residents.
According to May, Health and Wellness Minister Evans has already committed to increasing the hours of care a resident receives from the legislated 1.9 hours a day to 3.4 hours. The change is set to take place by the end of the 2005/06 fiscal year. May says facilities already give an average of 3.1 hours of care to each resident, well above the legislated standard. But long-term care advocates argue 3.1 hours of care isn’t a lot of time when it includes getting residents dressed in the morning, taking them to the bathroom, feeding them and putting them to bed.
“The bottom line is money. The basic issue is does society feel they should look after their aged and disabled or not?”—Tom McMeekin
Residents, their families, long-term care advocates and many nurses working in long-term care facilities share concerns about the quality of care residents currently receive, and say the system needs more money.
Pat Mallet, an RN at a long-term care unit in the Lac La Biche Health Centre, says there’s often not enough staff at her facility to ensure residents’ safety. She says one woman recently crawled over the side rail of her bed and broke her hip. Another injured herself trying to leave the facility.
“She was 71 years old and crawled over a fence to go home,” says Mallet. “We were giving her chemical restraints to try and calm her down, and halfway out on her trip the medicine kicked in. She fell and hurt herself. She had scrapes and bruises because she collapsed.”
Mallet says she also worries about the lack of regular visits to her facility by doctors, and says residents never get any dental care.
“We have a little lady right now, her teeth are all rotten, they’re abscessing,” says Mallet. “We don’t have anyone to come in and check that so it doesn’t get that bad. So right now she’s probably septic in her mouth.”
Similarly, Wodak’s mother had nine teeth removed because they literally rotted out of her mouth. That is how Wodak found out staff hadn’t been brushing her mother’s teeth. “My dentist had seen mom for several years before that and he was just horrorstruck, but he says he sees it all the time in patients in nursing homes,” says Wodak.
Anne Harris has been a nurse at an Edmonton long-term care facility for 32 years. She has noticed “a terrific decline” in the quality of care offered to residents in Alberta’s nursing homes because they are so chronically understaffed.
“We used to be able to go in and sit down and talk to someone for five minutes… stop and chat with them and make them feel like it’s their home,” says Harris. But she says now every shift is like working on an assembly line, and staff just do the absolute necessities and nothing else. Harris says that while there is now less staff, residents’ needs are higher than ever. She feels residents are just being “warehoused.”
“Sometimes I think people don’t get looked after to the depth they should be,” says Harris. “You do what you can do. You may miss something. You may miss someone who’s got a cough or something. Any elderly person—it doesn’t take long for a cough or cold to turn into pneumonia. There are bladder infections, if you don’t catch them right away they’ll persist and become septic.” Harris adds that the only reason things aren’t worse is because staff care so much about the residents and try to do more than the minimally required care.
“The government, the managers, the families, they still want the same amount of care. They can’t get it,” says Harris. “I want to die before I ever go into a nursing home and a lot of us do because we know what the situation is.”
Lynda Jonson, a retired nurse, and her husband spent a year visiting 102 nursing homes around the province. They collected 4,800 signatures on a petition demanding major improvements in the system. She struggles not to cry as she describes the conditions she saw at nursing homes throughout the province. “Sometimes I felt like they would’ve done better if they’d done [the residents] in,” she says. “It’s heartbreaking to see them treated worse than animals.”
Jonson says many relatives told her they pay for extra care, such as someone coming in to help feed a resident, because they don’t believe they’d be properly looked after otherwise.
“You don’t have any peace of mind to leave your loved one,” says Jonson.
Catherine Lutz, a personal care attendant in a long-term care facility near Calgary, says she went into her profession because she wanted to make seniors’ last years as meaningful as possible. Now she finds herself just getting people dressed, fed and toileted, and has no time to interact with residents and ensure they have a decent quality of life.
“We don’t have time to spend personally with people, curling someone’s hair, doing someone’s nails or doing foot care,” she says. “The pressure is definitely on to be as time efficient as you can be, and it doesn’t feel good to be rushing an elderly person. I expected I would be able to form more relationships with people and do things to bring them happiness, not just take care of their physical needs. They don’t have time to share their thoughts or their dreams because they know you don’t have time. Sometimes you wonder, would I want my mom or dad to be in a facility?”
Bev McKay, the founder of FAIRE, has long argued that the situation in long-term care facilities is so dire because facilities aren’t being monitored closely enough. McKay believes the existing standards, which she considers very weak, aren’t being enforced.
“This system is in chaos and residents’ health and lives are at risk,” says McKay. “The auditor general’s report just opens the door to the outrageous problems families are facing in these facilities that the regions are not admitting to, the government is not admitting to, that the industry is not admitting to,” says McKay.
In his report, the auditor general found the systems to ensure compliance with standards inadequate. Health and Wellness relies on regional health authorities, as well as the Health Facilities Review Committee (HFRC) and the Protection for Persons in Care Office (PPIC) to ensure facilities meet the Basic Standards. But Dunn found that only one regional health authority was doing any facility inspections during the time of his investigation. Following the release of Dunn’s report, Evans promised that Health and Wellness would do more regular audits of the facilities to ensure standards are met. However, sufficient audits are only one aspect of the problem; the other side is enforcing recommended changes.
“I want to die before I ever go into a nursing home and a lot of us do because we know what the situation is.” —Anne Harris
The HFRC has a mandate to inspect facilities and investigate complaints about the care of residents. But Dunn says the organization doesn’t check for compliance with the Basic Standards, and it can’t review medical or financial records without residents’ consent. As well, members of the committee don’t have any specialized training and have no authority to enforce compliance or levy sanctions. All they can do is make recommendations to the facilities and the regional health authority.
The PPIC Act is supposed to protect all Alberta residents in government institutions from abuse and neglect. But as Dunn points out, the PPIC Office does not have the authority to initiate investigations or to do regular compliance checks. All it can do is investigate specific complaints. PPIC also has no authority to review residents’ medical or financial records without consent. The PPIC Act requires staff at long-term care facilities to report any neglect or abuse. Residents and their relatives can also make formal complaints through the Act. Between fiscal years 2000 and 2005 PPIC received close to 3,000 complaints of abuse or neglect; long-term care facilities generated the highest percentage of those complaints. While the Alberta government says every complaint is thoroughly investigated, long-term care advocates complain that the PPIC is in fact virtually useless because investigators have to prove that a person deliberately abused or neglected a resident before any action can be taken against a facility. The provincial government began a review of the PPIC Act in 2002, including stakeholder consultation. However, no amendments have been made to the legislation.
“The auditor general’s report just opens the door to the outrageous problems families are facing in these facilities that the regions are not admitting to, the government is not admitting to, that the industry is not admitting to.” —Bev McKay
McKay and Wodak say the government should scrap both the HFRC and PPIC and create an independent body to inspect and monitor facilities, investigate complaints and take enforcement action, not just make recommendations. Wodak and McKay would also like Alberta to create a residents’ bill of rights, similar to the one in Ontario, to protect vulnerable seniors.
Wodak wants stronger mechanisms to ensure that residents such as her mother are not mistreated in the future.
“[Abuse or neglect] doesn’t have to be intentional—if you’re on the receiving end of it, it doesn’t feel much different. This problem doesn’t just affect the residents. It traumatizes whole families. It’s been awful,” says Wodak.
Wodak and other long-term care advocates hope the province’s long-term care system will finally get the attention it needs from government. What’s required, she says, is to value and respect elderly people as much as any other human being.
“We as a society have a responsibility, at least I thought we had, to provide care and security for people who are not able to provide it for themselves,” says Wodak. “That includes medical treatment, that includes safety, a comfortable place to live, whatever your needs are.”
Amy Steele is the news writer at Fast Forward Weekly in Calgary and freelances for a variety of publications including Western Living, Alberta Venture, Maisonneuve, Xtra West and the Western Producer.