|
The hidden costs of home care
As a national study on the cost-effectiveness of home care gets under way, Pat Daley examines the personal and economic stresses faced by the caregiver
By: Pat Daley
Caring for people at home is far better for both frail elderly, ill or disabled persons and their family or friends than hospital or nursing home care - and it's easier on the public purse. Or is it?
So far that belief is largely a matter of faith, according to the research team heading up the National Evaluation of the Cost-Effectiveness of Home Care. In fact, quality of care has had little to do with the movement away from institutions in the last decade. As with so many other shifts in public policy, it's mostly about money.
 |
|
"Family caregivers are under house arrest. We're slave labour." - Rose Giglio, full-time caregiver for elderly parents |
Rose Giglio has a lot to say on the subject. Her web site documents her experiences over the last five years of caring for her elderly parents. Like most caregivers, Giglio doesn't mind the work; it's just so all-consuming. She says: "Family caregivers are under house arrest. We're slave labour."
Giglio cares full-time for her 83-year-old mother and 90-year-old father, who has Parkinson's Disease. On top of the homemaking, nursing, and attendant care provided to the family, Giglio has given up her $50,000 a year job. That's what a 1999 Conference Board of Canada report calls the "hidden costs" of the health care system.
Her diaries are pages long, documenting day-by-day, year-by-year, experiences that are too familiar to many family caregivers:
high turnover in home care staff that means constantly re-orienting helpers to the problems and care needs of family members
varying skill levels among home care staff - the one thing that makes many family caregivers feel like they must always be there
inability to hold down a full time job
inability to take a vacation or, sometimes, even a day off
constantly arguing, negotiating, pleading, and scheduling with home care agencies
Not everyone's situation is that intense. The Conference Board survey of 1,500 Canadian workers found that for the majority eldercare means visiting, providing transportation, taking the person shopping, or helping out in a crisis. A good many other people also do housework, pay bills, and manage finances.
But it's the more than 25% who provide personal care - bathing, dressing, and feeding - who are really feeling the stress. These are working Canadians. On average they spend 60 hours a month in their caregiving roles. Not surprisingly, almost half say it is difficult to balance their personal and job responsibilities. Those in the "sandwich generation" - people with both childcare and eldercare responsibilities - were "significantly more likely" to say they had considered leaving their jobs because of work-home conflicts, according to the Conference Board.
|
|
A survey of patients recovering from acute hospital care over a 30-day period found that the burden and costs of care did not differ whether the patient was at home or in hospital |
Those are the personal costs. There are also costs to employers - the main focus of the Conference Board report.
"There are significant direct costs associated with absenteeism," it says. "In addition, employer health benefit costs can rise if distraught and worn-out workers find themselves admitted to hospital for treatment of stress or stress-related illness or require medication to help them deal with multiple responsibilities."
On the health system side, the only major Canadian study on the subject seems to show savings of about $830 per patient from home care. However, Laurie Thompson, CEO of the Saskatchewan Health Services Utilization and Research Commission (HSURC) which published the report, points out that it was a survey of patients recovering from acute hospital care over a 30-day period. It found that the burden and costs of care did not differ whether the patient was at home or in hospital. Thompson suspects the findings would be different for long-term care. HSURC will be releasing a new study on preventive home care at the end of May, however it will only look at system costs.
 In the meantime, the National Evaluation of the Cost-Effectiveness of Home Care is underway with a reporting date of November 2000. Its $1.5 million budget is being used for 15 sub-studies comparing home care to institutional long-term care and institutional acute care. Its focus is not simply which method is cheaper, but which provides the best outcomes for the money spent. Among the questions being asked is: What are the costs to clients and families for those in home care and in institutional care?
The research teams note Health Canada estimates that public home care expenditures were $2.1 billion, or 4% of public expenditures on health care, in the 1997/98 fiscal year, growing at a rate of almost 11% a year since 1990. However, the amount spent by individuals and families is simply unknown - including additional health costs for the caregivers themselves.
For Rose Giglio it's less a matter of money than who manages it. She believes she could do a better job of finding qualified nurses and homemaking aides than the agency currently providing assistance. Give her the money, she says, and "allow me to recruit for the individual level of care my parents need."
The Conference Board of Canada stresses the importance of flexibility in the workplace and also flags a Statistics Canada survey that showed about 16% of caregivers said some form of financial compensation for their unpaid work would help them.
***********
I know the last two recommendations could have helped in my own family's situation. Caring for an elderly parent made job hunting difficult for some. Not many employers understand that you can't stay late when a parent has to be fed, bathed and put to bed by six o'clock or that the homemaking help doesn't come on weekends. For most caregivers the solution isn't to let a family member go into a nursing home, especially in rural areas where the available bed could be an hour's drive or more away.
Home care continues to be favoured by governments at all levels. We can only hope that new policy decisions are held off until the research comes. Faith is not enough.
Pat Daley is a freelance writer and editor in Athlone in Simcoe County, Ontario.
Get More/Do More
You can read Rose Giglio's story at www.healthhorrorhistories.com
For information on the National Evaluation of the Cost-Effectiveness of Home Care, visit www.homecarestudy.com
Other articles from the Daley Dispatches
[ Front Page ]
|
