Alberta Elders Are Worried

Alberta Elders Are Worried!
A SALT Paper by Carol Wodak on the Crisis in Long Term Care in Alberta,
2008/02/20


A long-term care system is comprised of a comprehensive range of services, some based in the home, others based in the community, in health care institutions, and elsewhere. In an optimal and rational model, all of the services and structures that form a system will be designed to allow individuals to lead lives of dignity and, where possible, independence, without placing intolerable burdens on their families.

Continuing care is an integrated mix of health, social and support services offered on a prolonged basis, either intermittently or continuously, to individuals whose functional capacities are at risk of impairment, temporarily impaired or chronically impaired. The objective of continuing care is to maintain, and when possible, improve the functional independence and quality of life of these individuals.

The 1960 Canadian Bill of Rights is founded upon the dignity and worth of the human person, which compels the provision of excellent end-of-life care at a time when each person is at his or her most vulnerable. Each person is entitled to live their final years as free as possible from physical, emotional, psychosocial, and spiritual distress. Each Canadian is entitled to access skilled, compassionate, and respectful care at the end of life. Quality end-of-life care must become an entrenched core value of Canada's health care system.
We’re the first generation of Canadians who have contributed for all of our working lives to the development and the funding of the Canadian health care system, as well as other important social security programs such as public pensions. We have a greater life expectancy than ever, in part because of those programs.

There are 354,000 Albertans over the age of 65 – about 11% of the population. (For comparison, there are 277,000 more Albertans under the age of 14.) About 40,000 Alberta seniors are over the age of 85. Most seniors (81%) live in urban areas, and 60% live in Calgary or Edmonton. About 80% of Alberta’s seniors report their health as good, and about 4% live in long term care facilities.

More than 90% of Canadian seniors live in a private home, and nearly a third of that number live alone. Women are especially likely to live alone – more than half of women aged 85 and over live on their own. Many of us run the risk of becoming increasingly isolated, as our own mobility is challenged and the health of our friends limits their ability to help –especially when our families are far away. A 1995 Eldercare and the Workplace Report by the Conference Board of Canada found that 16% of children live more 1000 kilometers from their parents, 14% live 400-1000 kilometers away and 14.5% live 100-400 kilometers away.

Our median income is much less than that of average Albertans; if all we have is federal government pensions, we’ll be eligible for the Alberta Seniors Benefits for some things – but those benefits were slashed in 1993 and, despite promises, have not been fully restored.

37% of seniors provide household or personal assistance to others, including our children, and 7% of us spend at least 5 hours a week helping other seniors. Many of us are trying to cope with inadequate or even unavailable care services for another elder, either a family member or a friend. We find ourselves trying to be nurse, counselor, advocate, care manager, crisis worker, personal care provider, housekeeper, chauffeur and friend, in the midst of our other responsibilities.

In 2002, almost 20% of Canadians over the age of 45 were providing care to one or more family members over the age of 65, and most of this care had been provided for 5 to 10 years. A 1996 estimate of the value of informal caregiving for that year was that it would have taken 276,509 full-time employees, at a cost of $5 - $6 billion, to replace all the unpaid eldercare providers. Informal caregiving comes with great satisfaction, and often with significant costs. There are expenses – an American study estimates that out-of-pocket expenses to informal caregivers averages $19,525 over the caregiving period. Changes in work or work patterns to accommodate caregiving responsibilities can have implications for current and future income and benefits of caregivers, and there are often physical, emotional and social costs.

Most seniors are already living with a chronic health problem or two. Some of us are surviving with illnesses that used to be fatal. But 5% of us will, in the next decade, develop 4 more serious chronic health problems, and need continuous skilled nursing care, for an average of ±3 years. (Length of stay data is hard to find – but reports indicate that average length of stay is declining quite rapidly, because the entry bar is continually being raised.) We have an 8% chance of a dementia illness (mild, moderate or severe) until we reach age 85, when it increases to 35%.

At age 65, we can expect to live another 20 years, but we can also expect to live from 3 to 6 of those years with disabilities. 10% of us will need long term home care by the time we’re 65, and that increases to 42% by age 85. Half of us will have to rely on informal caregivers to provide that care. We will have to pay privately for half of the formal care we need; some of us won’t get the care we need – and may suffer from a newly-defined illness called ‘self-neglect’.

Even in a care facility, we’ll get almost as much care from family members as we do from nursing home staff. If we’re placed in an assisted living setting, families and friends will have even more responsibility for organizing or providing – and often paying for – complex care services. Whatever care we need, planning ahead is difficult, since we can’t even get on wait lists until care needs have reached a crisis point, and the wait lists and times are increasing.

Consider the care needs of continuing care centre residents. 75% have serious dementia illness; more than 90% need assistance with mobility, eating, toileting, dressing; they average 5 serious chronic medical diagnoses. Most of the care is provided by untrained staff, according to a facility schedule. ‘Care plans’ are required – but even where care needs are documented, there’s no guarantee that appropriate interventions are provided. The Capital Health Region’s continuing care operation has been ‘working short’ for several months. That means care plans are ‘modified’ to the minimum essential services; getting residents out of bed for the day is not an essential service for many; and beds are left empty when residents die.

A 2001 Ontario study showed that 68% of long term care residents received no nursing rehabilitation. Only 10% of those who could benefit received even 1 physiotherapy intervention, and only 27% got daily range of motion exercises – usually for 20 minutes a week. The most common response to distress indicated by behaviour ‘problems’ is sedation. In Alberta, facility staff ‘hours of care’ is defined as paid hours of work for all unit staff, regardless of what job they’re doing. As the illness and disability acuity level of residents has risen, staffing levels and competencies have been reduced. And so have the therapy services that might help to slow the physical deterioration of residents; a1993 study funded by Alberta Health showed that daily physical activity supervised by professional staff not only slowed decline in several health and functional status areas, but reduced care costs by significantly more than the program cost.

The Health Quality Council of Alberta, created in 2002, is the agency responsible for monitoring quality of health care. In the last health care ‘customer satisfaction’ surveys it did, the ratings for complaint handling and long term care ranked lowest – and were headed down. As a result, the Council identified long term care facilities as a high priority concern, and is just now completing a detailed survey of family and resident satisfaction in facilities. This is the first survey undertaken in Alberta to assess long term care from a family/ resident view; and, like the very critical Auditor General’s report in 2005, does not address clinical care quality. There are other issues of patient safety in care centres not yet addressed – such as the frequency and consequences of superbug infections, and the adverse effects from the use of antipsychotic medications used off-label.

We’re all at risk of the serious illnesses that can come with increased age, and of aging with existing chronic illness. We’re also at risk of health care funding and policies that limit the health care and related support services that we might need, because of our age. The public discourse too often is based on the premise that our health care is too expensive, and that if it’s not controlled, there won’t be enough for others.

Indeed, if one looks at health care spending by age category, seniors and infants are the most expensive. Of course, one can argue that health care costs are related to illness (heart disease or cancer, for instance); but we don’t see health care spending restricted for those expenditures.

In Alberta, we’ve seen public spending on continuing care decrease from 10.5% of health spending in 1998, to 6.3% in 2006. In Toronto, during the SARS epidemic, the exclusion of the elderly from intensive care units resulted in a 95% death rate, while only 3% of the younger persons who did have access to ICUs died.

The frequent media stories about wait times, bed shortages and closures, superbug infections, and health system performance ratings focus on acute care hospital services. We know those problems are just as severe and significant in continuing care centres, and affect many people – mostly old people – but they don’t get noticed on the radar. If anything, we hear talk of ‘bed-blockers’ –just getting in the way of others - when in fact those are ill or injured folks who are not getting the extended care they need.

We’re concerned that our health care is being rationed, not only in the overall spending, but in spending to ensure we have health care staff trained in geriatric care, to provide the programs and supports to slow our decline into dependency, and to adequately care for those of us who live long enough to become physically and cognitively disabled.

Between 1988 and 2007, the population in the province by 2007 has increased by more than 43%, but the number of residents in long term care facilities had decreased by 3.5%. Last year, the Minister of Health spent $1.3 billion on facility-based, community care and home care. But, as the Auditor General confirmed, we have no idea where that money went.

Private spending on health care has increased in Canada; individuals pay about 30% of health care costs overall – and that doesn’t include the cost of health care or other insurance premiums (such as auto insurance, that pays for accident-related health care costs), or many other ‘goods and services’. For continuing care, the costs to the individual are much higher; and in Alberta, they’ve been increasing as government shifts facility costs to the residents, adds co-payments to home care, and limits publicly-funded care and services.

It’s discouraging that the only measures of success for our continuing care system used by Alberta Health and Wellness are the decrease in the number of long term care beds and the rate of shift to community care settings – both fiscal measures. Nobody seems to care about the care, or the expense and burden this puts on elderly spouses and others.

Indeed, we can look even further back, to the Government’s redefinition of its responsibility to health care itself: “The Alberta government has redefined its role from direct service provider to setting strategic direction for the health system through policy, legislation and standards”. This might have worked, if the legislation, standards, and oversight responsibility had been competent and with adequate funding and accountability measures. In the area of eldercare (and seniors benefits), the priority has been to delegate, save money, and ignore the signs of problems.

By transferring most elder care responsibility away from the Ministry of Health, and promoting the shift to assisted living and the reduction of continuing care centre beds as the goal of our continuing care system, the Government is saying quite clearly that health care for seniors is a nice-to-have extra, not the fundamental basis for comprehensive, coordinated health care program.

In 2005, following the Auditor General’s report on Seniors Care and Services, then-Health Minister Iris Evans estimated that it could cost as much as $250 million to implement his recommendations, with $150 million for staffing alone. What was provided was a total of $78 million, including $38.2 million for staffing. It made no noticeable difference in the daily care of the residents. Neither have the repeated Health Workforce Strategies, or the sophisticated recruitment initiatives, or the implementation of the health care aide curriculum and competencies.

This is not a housing or homelessness issue; it’s a healthcare issue. The shift from ‘institutionalization’ to ‘community care’ for frail elderly persons got its start in Denmark 30 years ago. In the following 10 years, Denmark established a plan for appropriate community housing with publicly funded, carefully planned comprehensive health, personal, and social care services, including medications, supplies and equipment, physical therapies and activities. Instead of shifting the costs to the individual, as most American and Alberta imitators did, they provided the same level and range of care that previously was available in nursing homes, 24 hours a day. This ‘ambient’ care includes community services like transportation and income support. The initial costs were high; but in 10 years, the costs had stabilized, the health of elders had improved, only the most seriously ill required nursing home care, and the total health care costs had stabilized at a lower level than previously.

We’re concerned that the new ‘continuing care’ settings have been systematically privatized. Public capital funding is given to private developers and operators; since they then own the land and the building, it’s an instant boost to their fixed assets. (The remaining capital costs will be recovered from ‘resident fees’, which is good news for their investors – and so are the private-pay service fees.) One of the growing industries is home-care franchises - one of the “great business opportunities of all time”, “tapping unprecedented wealth” with “years of sharply accelerating revenues”

A recent Industry Overview of nursing homes and assisted living by Hoovers reports that the US industry has about 30,000 companies, operating 60,000 nursing facilities, with combined annual revenue of $100 billion. It notes that profitability depends on efficient operations; most revenue comes from government sources; adequate staffing is a problem because of low pay and difficult work. The report notes that annual revenue per worker is less than $50,000.

Measuring success in this way explains both the correlation between wage increases for nurses and subsequent substitution of less skilled employees in care facilities, and reliance on time-motion scheduling of personal care services.

Our children have often been part of our struggles to care for our aged parents. They are just as concerned as we are that they’ll be dealing with that same trauma on our behalf during the next 20 years.

Our health care system is based on the principles that health care is a public concern, and that we are willing share the costs to support the needs of vulnerable others based on need rather than ability to pay. (In the same way, we all contribute to the costs of public education, even though the costs for that are much greater for children.)

We’ve got good reason to be worried – for all Albertans.

Prepared by Carol Wodak for SALT February 2008
(780) 417-1705 cwodak@techwcs.com