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Dec. 6, 2003. 01:00 AM

THE STORY SO FAR >

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 >

Tell us your stories Shocking neglect of elderly

Exclusive study reveals inadequate care is widespread

 

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

 

 

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.

 

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.

 

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 deterioriating 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.

 

 

 

`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.

 

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.

 

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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