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Shocking neglect of elderly
Exclusive study reveals inadequate care is widespread

At least one third of 544 homes have history of injury, abuse

"More than 7,500 complaints were filed with the provincial health ministry over the past five years"
 

MOIRA WELSH
TORONTO STAR

Elderly residents of many Ontario long-term-care homes are living in a state of neglect.

They are left in feces-filled diapers or urine-soaked clothing. They suffer from untreated bedsores that eat down to the bone. They go hungry. They are injured. Some are abused.

Some die alone, ignored by well meaning but overworked staff in many of the 544 homes across the province.

A detailed analysis of three separate provincial databases obtained by the Star shows there's a deep crisis in the nursing-home system a system that receives $2.1 billion a year in government funding to help care for 65,000 Ontario seniors.

Taken together, the data reveals widespread neglect and inadequate care.

One database is filled with heart-wrenching complaints made by families. Another reveals injuries and abuse. The third, comprised of inspection records, details a litany of homes with substandard care.

Over the past few days, Star readers learned the tragic story of Natalie Babineau. The three-day series detailed how the 93-year-old mother of 10 suffered a broken leg and ultimately died because a gangrenous bedsore was not treated properly.

Her daughters called the conditions in her nursing home "deplorable."

Government inspectors, who visit each home once a year, unearthed evidence of poor care in four out of five, the Star found.

The Star's research also shows many homes at least a third have a history of serious complaints and injury or abuse reports filed to the ministry.

Problems uncovered during the investigation include:

A 72-year-old diabetic man from Strathroy, near London, was so neglected that an infected toe rotted and his foot had to be amputated.

An elderly man in obvious distress died alone, sitting in a wheelchair beside the nurse's station in a Windsor nursing home. Nobody comforted him.

Seniors in homes in Toronto and across the province were found to be malnourished, dehydrated and living in desperate conditions.

Leaders in the nursing-home field agree there are serious and persistent problems. They are demanding immediate changes from Queen's Park. Topping their wish list are more dollars for staffing and better government enforcement.

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Here's what they say:

"People in our homes are at risk," says Karen Sullivan, executive director of the Ontario Long Term Care Association, which represents mostly for-profit nursing homes. "People are at risk of waiting to go to the toilet, or falling because they tried to go on their own ... they are not getting the care when they need the care."

"The neglect of the elderly is a very significant problem in Ontario," says Lois Dent, spokesperson for Concerned Friends, the chief advocacy group for nursing-home residents.

"These are supposed to be homes where elderly people end their lives in a compassionate way. It is unacceptable that there should be any kind of neglect or abuse. It is a disgrace for Ontario," Dent says.

"I wonder how much worse it has to get before we see the situation addressed," says Donna Rubin, head of the Ontario Association of Non-Profit Homes and Services for Seniors.

"It is a crisis," says Joy Richards, vice-president and chief nursing officer at Toronto's Baycrest Centre for Geriatric Care, regarded as one of the best homes in the province. Richards blames inadequate staffing a direct result, she says, of government funding shortfalls.

The provincial health ministry acknowledges there are problems.

"The ministry is aware that improvements need to be made," says Mary Kardos Burton, assistant deputy health minister. Burton plans to make a series of proposals (such as a better enforcement program) to the new Liberal government.

The homes researched by the Star fit into three separate categories: for-profit nursing homes, non-profit municipal homes for the aged, and charitable institutions. Unlike non-government regulated retirement homes, all are governed by ministry rules. For the purposes of this story, they are all referred to as nursing homes.

Complaint records obtained by the Star show families are angry and upset.

More than 7,500 complaints were filed with the provincial health ministry over the past five years, with each family that complains making an average of two complaints highlighting different problems.

The Star's investigation found these are just the tip of the iceberg, for several reasons.

Many incidents go unreported, often because the family fears retribution or because the family is not aware of the incident. Many that are reported are not included in the ministry's data management system, from which the Star obtained the records (for example, if a family member complains to the home, not the ministry).

Fewer than one person out of 100 with a problem will ever file a complaint, says Charmaine Spencer, a lawyer and gerontology researcher with Simon Fraser University in British Columbia. "There is a tremendous fear among residents and families of nursing homes to complain about their care," Spencer says.

That apprehension was borne out by dozens of interviews with families and seniors' advocates.

Analysis of the complaints shows that inadequate care and neglect are the biggest problems 57 per cent of the complaints filed against homes relate to these concerns.

Problems cited include:

Going hungry, because there is not enough staff to help the resident eat.

Being ignored when calling for help.

Unexplained bruises, untreated bedsores, urine-soaked clothing, feces under fingernails at dinner time.

Being left alone in a wheelchair all day, every day.

Other complaints relate to infection control, dirty living conditions and some physical, sexual and verbal assaults, many of which are resident on resident.

How many complaints and serious incidents (such as injury reports) are too many? In doing its research, the Star learned that the ministry of health has no standards for this.

However, the Star found that one third of the homes had particularly high numbers a total of more than 40 serious incidents and complaints over the five-year period. More than 10 per cent of the homes had over 100 incidents and complaints in the same period.

In addition to complaints and serious incident reports, the Star reviewed and analyzed the government's own inspection records from the year 2002.

These show inspectors routinely find serious problems with homes that fail to meet requirements for a safe and healthy environment. Inspectors found homes not providing the care they agreed to provide; homes with dirty, unsafe conditions; homes with poor infection control; and homes that did not provide adequate training for staff.

Inspectors found four out of five homes had some form of quality of care problem, and issued directives or recommendations for improvement as a result. Over one in three homes had more than 10 problems in the past year.

It became clear during the investigation that families must lobby constantly to ensure their loved ones get good care. Some hire, at significant expense, private caregivers. Others quit their jobs to provide the care the home advertises it will give.

Why is this happening in Canada's richest province?

Nursing homes are chronically underfunded and short-staffed. In a comparison with jurisdictions across Europe and North America, a 2001 Ontario government study concluded the province has the lowest levels of daily personal care lower even than Mississippi. In addition, residents are being admitted older and sicker than ever before. In the last decade, the number of medically fragile residents, with conditions like Alzheimer's, Parkinson's disease or dementia, has increased by over 17 per cent, creating the demand for chronic care in homes that don't have the time and trained staff to respond. And hospitals, which have the expertise, are stretched to the limits and can no longer provide long-term care.

Adding to the pressure is Canada's graying population. By 2011 when the first baby boomers hit retirement age the number of Ontario residents aged 80 and older will nearly double.

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The people relying on nursing homes are our parents, grandparents and great grandparents. They survived the Great Depression, fought in World War II and then quietly worked hard, raised their children and paid their taxes.

"The seniors in this country did so much for us, but they are not getting what we should be giving to them," says Janet Holtrust, a front-line worker at Versa-Care Centre in Uxbridge. "They are such a vulnerable group of people. They are like children. Do you think we would ever allow children to live like this?"

Irene Campbell-Taylor is a clinical neuroscientist and a PhD, known for her work in swallowing and eating problems of the elderly. She has spent 25 years working with doctors and dieticians in Ontario nursing homes, and is appalled by what she sees as deteriorating conditions over the last five years.

"What I have seen is a vicious circle of malnutrition, dehydration and neglect," Campbell-Taylor says. "If residents experience any of those, then they are at huge risk of developing infections, like pressure ulcers (bedsores), that lead to excruciating pain and then death.

"I have seen this happen over and over. Residents aren't fed properly, they get dehydrated, they don't get the proper care, like baths, they develop pressure ulcers that become gangrenous and then they die. We are killing off our elderly."

Currently, there is no guarantee of a minimum standard of care in an Ontario nursing home. The province had one 2.25 hours of daily care per person, per day but that requirement was dropped after the former Conservative government took power.

The Tory government also dropped the regulation for a weekly bath, and the requirement that a registered nurse be on site 24 hours a day to dispense medication. Problems exist everywhere, even in facilities like the Baycrest Centre a home renowned for its care.

Al Gorlick, 81, is a retired pharmacist who pays $24,000 a year on room and care for his 79-year-old wife, Sarah, at Baycrest. It costs him another $40,000 a year for a private caregiver, who does the job the home doesn't have time to do.

Gorlick is part of an increasing trend families who spend upwards of $60,000 a year on both the home and private "companions," or quit their full-time jobs to do the bathing, walking, toileting and feeding work themselves.

Sarah "Sorcy" as Gorlick lovingly calls her has Alzheimer's.

"At my wife's dining room table there are four people and three of them have caregivers, paid for privately in excess of $40,000 a year," Gorlick says. "If you don't have an attendant, you will sit in a chair all day.

"The staff here range from excellent to good. None are bad. The reason why the Baycrest workers, as understaffed as they are, can possibly cope is because there are so many sitters and companions working there.

"Without them, the place would be chaos," Gorlick says.

 

#1
Part 1: Natalie's story  
Part 2: 'I'm so sorry'  
Part 3: Helpless family  
Part 4: Shocking neglect  
Part 5: Secret records  
A daughter's sad diary (Dec. 7)  
Minister promises change (Dec. 8)  
Walkom: We've heard this before  
All related stories  
Voices: Your stories  

`We're so rushed caring for them that we're not treating them like humans. It's like an assembly line.'

Dorothy Algar, nursing-home worker


Baycrest's Richards says workers throughout the industry are demoralized, which has a direct impact on how they treat residents.

"When caregivers are burned out, they disconnect," says the home's chief nursing officer. "They don't have the energy to go back one more time. I'm not excusing the behaviour. I think it is deplorable and needs to be addressed. I think what we are seeing is caregivers who are so burned out they can't attend to the clients' needs anymore.

"We have a term for it in the industry. It's called compassion fatigue."

Baycrest has higher staffing levels than most since it can tap into extra money from its fundraising foundation.

The annual government funding for nursing homes is $2.1 billion. That is up by $330 million from three years ago, and works out to about $117 per resident per day. Funding for prisoners in Ontario's jails is about $140 a day.

The industry has welcomed the increases, but critics say a big chunk of the money was eaten up by much needed pay increases, pay equity settlements and the purchases of supplies, such as diapers. The ministry claims nearly 2,400 full-time jobs were created, but the nursing-home sector says more staff is desperately needed.

Karen Sullivan, whose mostly for-profit association represents 80 per cent of the homes across the province, says another $420 million is needed to catch up to the daily hours of care provided by Saskatchewan in 1999.

"We're not where we need to be but we feel that we've moved forward," Sullivan says. However, "if you don't continue to get increases, you can slip back pretty quickly."

Several front-line workers risked their jobs to speak with the Star. They believe that speaking out can only improve the lives of the elderly.

"Residents are being neglected," says Holtrust, of Versa-Care Centre in Uxbridge.

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Holtrust says she's seen no real improvements in care, despite the funding increase.

"They are just not getting what they need. We look after war veterans here. It truly breaks my heart to think what they did for us, and what we're doing for them."

A typical day is chaotic.

"People aren't being taken to the bathroom as quickly as they'd like. They aren't given enough time for meals. We are on really tight time constraints and we'll be in the middle of feeding a lot of people when someone else wants to use the bathroom.

"The ministry says you're not supposed to leave people who need to use the bathroom. The ministry also says you're not supposed to let someone's meal get cold. So you say, `I'll be back in a minute,' and take Charlie to the washroom. But it never takes just a couple of minutes and when you come back, the other man's lunch will be cold so you take it down to the kitchen to heat it up and when you come back, someone else needs to use the washroom.

"I'm 35 years old," says Holtrust. "And I'm so tired I'm ready to retire."

Holtrust's home is operated by Central Care Corp., commonly known as Central Park Lodges. It is Ontario's largest nursing-home chain. Central Park has 7,000 residents and gets the most tax dollars over $100 million a year to operate over 60 facilities across the province.

Senior spokesperson Mary Nestor has told the Star her company has a system for fixing problems rapidly when they arise. Problems that do occur, she said, are "the exceptions to the overall high standards we successfully maintain."

Another worker who spoke to the Star is Dorothy Algar, a health-care aide at a small private chain called Community Nursing Home in Port Perry.

Algar says she's seen an alarming increase in pressure ulcers that can eat deep holes into the skin. She blames staff shortages.

"I can honestly say that in the last 10 years, I have never seen so many ulcers as I'm seeing now," Algar says. "Now we have sores so big you can put your fist up inside of them."

People who sit in wheelchairs or lie in bed for long periods of time are particularly susceptible to pressure ulcers. The painful bedsores are caused by unrelieved pressure in particularly bony areas of the body, along with malnutrition and dehydration.

Nursing-home workers are supposed to reposition immobile residents every two hours to relieve the pressure on the body.

"Nobody has time to reposition," says Algar, who stresses that her home works hard to give good care and brings in extra supplies, like special mattresses, to deal with bedsores. "When you have somebody who is just starting to get the sores, a bath can make all the difference for their circulation. We just don't have time to do that.

"We're working short so often, we get snappy, our tempers go. Some residents cry when they ring the buzzer for help. They say, `I'm so sorry.' God forbid they just want to tell you a story, that's not going to happen. There is such a sense of loneliness to their lives. We're so rushed caring for them that we're not treating them like humans. It's like an assembly line."

Everyone in the industry agrees that front-line workers have a tough job. It is dirty, often back-breaking work. Many of the nurses and aides do it because they want to care for the elderly. Most are paid roughly $16 an hour for a job that keeps them running from the moment they punch in.

Training is an issue. There is no educational or training requirement laid down by the ministry for personal care workers in homes, although some facilities insist on a three- to five-month training program at a community college. Veteran employees worry that new workers are ill-equipped to do a proper job.

Families interviewed for this story say they were shocked to discover the substandard care.

Brenda Carson witnessed her mother, Margaret, wither away in two southern Ontario nursing homes. She died on Aug. 20.

Margaret, 81, a World War II veteran with England's Auxiliary Territorial Service who moved here with her Canadian husband, lived for one "horrible" month in Versa-Care Lambeth, a Central Park Lodges home, says Carson.

She says her mother was placed on a floor that smelled of urine, with residents who had serious behavioural problems.

The family removed her, and she spent her final three months in Caressant Care in Arthur, Ont. That home, her daughter says, missed signs of pneumonia and ignored a swollen leg.

"There is an awful lot of guilt about having put your own mother into a place like this how can I ever forgive myself for having done this to her?" says Carson, communications director of the Hearing Foundation of Canada.

"My whole feeling about nursing-home care now is, never put anybody you care about in those places. They are horrible. They won't be looked after, their needs won't be met, they won't be stimulated, they won't be helped, and they will be ignored.

"If I had to advocate for my mother every time I went there, which was every week, then they should have told me that up front. Tell me there isn't enough staff to look after all the health problems. Tell me that I am responsible for doing that, because I assumed that since she was going into care, that is what she would be getting care. But that wasn't the case. The case was ignore it for as long as possible."

Lara Riehl, administrator of Caressant Care Arthur, says Margaret Carson's issues were "dealt with appropriately." She said Carson might have taken her concerns to the front-line staff, but never brought them to the home's top management.

Nestor says Versa-Care Lambeth, the Central Park Lodges home where Carson first stayed, tries to keep residents with similar cognitive abilities together but can't always accomplish that. The chain's spokesperson also says the home works hard to control urine odours, which can be more intense at certain times of the day.

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Alyn Kemp, 72, a diabetic who lives at the municipally run Strathmere Lodge in Strathroy, says staff ignored his infected toe for a year until it rotted, leaving his right foot so badly infected it had to be amputated.

"I am legally blind, so I couldn't see it. I have bad circulation, so I couldn't feel it. But one day I went to the television room, put my feet up and I could smell it," says Kemp, an articulate man who once worked as a bank manager in Grand Bend.

 

"Before my foot came off, they had been changing the dressing every day for a year. I kept asking them, `How does it look?' Usually they said it looks fine. One nurse said it was gruesome. But they left it until it rotted.

 

"I feel like I was forgotten. They just ignored me. My greatest fear now is going completely blind in here. Then I can't fend for myself.

 

"I don't want to be vulnerable in here. I've watched ladies call for someone to take them to the washroom. The workers are too busy and no one comes. Then the ladies start crying, saying, `I've got to go, I've got to go.'

"They try to hold on as long as they can, but you can see that their clothes are soaking wet. It's a terrible thing to watch a lady cry because she's had to wet herself."

Strathmere administrator Larry Hill says privacy issues prevent him from fully discussing Kemp's story, but denies he was neglected.

"He was receiving ongoing medical care for his diabetes as well as nursing care," he says.

"In some respects, it is a question his physician would have to answer as to why more aggressive action wasn't taken. Nurses act on doctors' orders."

Hill also contests Kemp's observations about urine-soaked clothing. "Our staff is very compassionate," he says.

In addition to complaints and ministry inspection reports, a third and different level of government scrutiny is called the "unusual occurrence reports," filed by the homes. These reports detail an incident and propose an action plan, if any, to fix the problem.

In a five-year period ending March 31, 2003, 13,574 such reports are listed on the data the government released. However, the Star has learned from the ministry that this represents only about half of the reports in that time period (last year's provincial auditor's report criticized the ministry for not keeping track of the reports and the ministry vowed to improve).

The majority of the reports were for injuries that required a visit to the emergency ward, or admission at the hospital.

According to the data that was released, 68 per cent of the reports were injury related. Ten per cent involved abuse, 3 per cent missing persons, less than 1 per cent accidental death, with the remainder made up of medical error, fraud and a series of unspecified occurrences.

 

While some accidents can't be avoided, advocates for the elderly say many are the result of understaffing, poor training, or simply bad care.

Vera Muza, 79, broke her spine and numerous other bones after she was dropped from a broken chair lift at Meadow Park Long Term Care Centre in London on May 13, 2002.

Sandra Fysh, Meadow Park's new administrator, said she couldn't comment on the case due to resulting legal action.

Muza spent months in the hospital and, according to a lawsuit filed by her daughter, Ohla Muza, died the following September as a result of complications from the fall.

Meadow Park filed 79 injury reports for the five-year period, one of the highest numbers of injuries in the province.

Lois Dent, of the Concerned Friends advocacy group, believes the lack of interest in how the elderly are treated reflects a deep-rooted ageism.

"Everyone says it doesn't matter because they are going to get sick and die anyway. But why should they spend the end of their lives in such terrible pain? It doesn't have to be that way. Being able to die a good death is really important."

Neuroscientist Irene Campbell-Taylor believes the future is grim.

"The state of long-term care is such that the baby boomer generation should be very afraid. Especially if they don't have family, because if you don't have an advocate you are doomed."

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Part 1: Natalie's story  
Part 2: 'I'm so sorry'  
Part 3: Helpless family  
Part 4: Shocking neglect  
Part 5: Secret records  
A daughter's sad diary (Dec. 7)  
Minister promises change (Dec. 8)  
Walkom: We've heard this before  
All related stories  
Voices: Your stories