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Critics Blast Government Long-Term Care Reforms

“They cut hospital beds and lay off staff without having community health care services ready…”

“When the elderly… decide that facility-based care is the best option, they can’t get it…”

By David South

Today’s Seniors (Canada), October 1992

Seniors should keep a close eye on the Ontario government’s proposed long-term care reforms. According to critics, the plan has more than a few bugs. 

The term long-term care encompasses an often confusing web of services, from home-provided community services like meals on wheels to institutional care including homes for the aged, seniors’ apartments and chronic care hospitals. 

Like other provincial governments, the Rae government is trying to rein in escalating health care costs – and long-term care services aren’t immune. They hope that emphasizing prevention and healthy lifestyles, plus providing more services in the home and community, will reduce reliance and expensive health care services like high-cost drugs, surgery and high-tech equipment. According to health minister Frances Lankin, this will preserve medicare in the age of fiscal restraint. 

The government has outlined seven goals for its long-term care reforms: prepare for the coming surge in the over-65 population; cater services to better reflect the cultural, racial and linguistic make-up of Ontario; eliminate confusion over what services are available; involve the community in planning so that services reflect community needs; lessen reliance on institutions; provide support to family caregivers; tighten regulations governing government-run and private facilities; and improve working conditions for the largely female caregiving workforce. 

But many people are wary of the proposed reforms and worry that if they aren’t managed properly, some seniors will fall through the cracks. 

A report released in July by the Senior Citizens’ Consumer Alliance for Long-Term Care Reform blasts the government for being simplistic in its plans. The report compares the present reforms to the failed attempt in the 1970s to move psychiatric care out of the institutions and into communities by closing 1,000 beds. The tragic result in that case was homelessness for many psychiatric patients who found community services unable to help, or, more often than not, non-existent. The Alliance fears seniors – the biggest users of health services – could fall victim to reforms in a similar way. 

Emily Phillips, president of the Registered Nurses’ Association of Ontario, is blunt: “The NDP’s plans sound good on paper, but they can’t give a budget or direct plan on how they hope to carry out reforms. They are going about things backwards. They cut hospital beds and lay off staff without having community health care services ready.”

The Ontario Association of Non-Profit Homes and Services for Seniors (OANHSS) – which operates charitable and municipal homes for the aged, non-profit seniors’ apartments. chronic care hospitals and community services serving over 100,000 seniors – says 4,300 seniors are on waiting lists for their member facilities right now, and things won’t improve if the government continues to reduce the number of long-term care beds. 

But Lankin insists that beds are available in homes and hospitals and it is funding formulas that prevent them from being filled. 

To help carry out its reforms, the NDP will reallocate $647 million by 1996-97. In bureaucratese, this funding is said to be “back-end loaded”, or mostly spent close to 1996-97. 

The problem with this, according to the Alliance, is that the government has already embarked on a radical “downsizing” of hospitals, closing beds and laying off health care workers. Lankin claims the worst case scenario for layoffs this year won’t exceed 2,000, but the Ontario Hospital Association claims 14,000 jobs are in jeopardy. Because of this, the Alliance wants money to be spent earlier to avoid gaps in services. 

Phillips believes it will be hard to pin down the extent of job losses. “For every full-time job cut many part-time and relief positions go with it,” she says. 

Dr. Rosanna Pellizzari, a member of the Medical Reform Group and chair of the Ontario Association of Health Centres, wants better community accountability for hospitals before they lay off staff and cut services. “Sometimes it makes sense to bring people to hospitals,” she says. “Planning must be at the community level, open and democractic. Health care workers, who are mostly women, should not be scapegoated for financial problems. Doctors and management should go first. Physicians experience very little unemployment.” 

Many nursing and charitable homes for the aged are facing financial crisis. According to OANHSS, six charitable homes for the aged have closed since 1987 due to deficits. In 30 homes, the total annual deficit has increased 125 per cent since 1987. The Ministry of Health recently allocated special funds of $8.1 million to ensure these facilities survive until January, when a new, needs-based funding formula will be introduced. It is intended to better match the actual care requirements of the 59,000 consumers living in long-term care facilities. 

Michael Klejman, executive director of OANHSS, agrees with helping seniors to stay in their homes. “But when the elderly and their care-givers in Ontario decide that facility-based care is the best option, they simply can’t get it,” he notes. “We know from experience that many of them remain in acute care hospital beds with a cost to the province of about four times what it would cost them to fund a long-term care bed. And many, unfortunately, remain in their own flats or apartments at considerable risk to themselves, isolated and dependent on a patchwork of services.” 

Beatrix Robinow, who worked on the Alliance’s report, was not impressed with the government’s initial plans, especially the proposed creation of 40 service coordination agencies whose mandate would be to control the delivery of home care services to seniors. Robinow thinks this would add to the confusion and just be another layer of bureaucracy. Many people who appeared at the Alliance’s public hearings expressed confusion over how the long-term care system worked. 

Robinow says that the government could save money by trimming the bureaucracy and using present organizations like the little-known District Health Councils. 

“District Health Councils have nothing to do with social services,” says Robinow. “But we want them to be expanded to include long-term care and general supervision of community services. We are waiting to hear if they are interested. I would urge the government to make sure that services are in place before pushing people out of institutions.” 

The health minister is cautious about the government’s next steps. “The Alliance’s report has been very helpful,” she says. “We are in the process of developing options. Two other ministers are involved and we also need to take this through Cabinet.

“Ontario is much larger and more complex (than other provinces). The range of services is more developed. We also have a mess in jurisdictions between municipalities and the province. And in Ontario there isn’t a concensus that this is the way to go. 

“We have been doing a lot of rationalization and streamlining for longer than other provinces. Most thinking people looking at the situation agree that doing nothing would hurt the system. It is not sustainable at present. You hear a lot of things about user fees. That would be the slippery slope for medicare. That would make people think they could buy better services.”

Ironically, user fees were recently endorsed by the Canadian Medical Association, suggesting the minister will have a fight on her hands with angry doctors. 

Amidst all the confusion, Dr. Perry Kendall was appointed on Aug. 24 as the provincial government’s special advisor on long-term care and population health. This veteran of both the City of Toronto as Medical Officer of Health – and the groundbreaking Victoria Health Project in British Columbia (often seen as the model for community services to seniors) seems well qualified. “One problem in the past has been the creation of smaller and smaller organizations every time somebody felt the system was not responsive to their needs,” he says. “This created organizational chaos. The challenge  now is to get all the organizations back together to share their expertise.”

Lankin says she hopes to have a conference on the reforms in the fall. 

ORCID iD: https://orcid.org/0000-0001-5311-1052.

© David South Consulting 2021

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Feds Call For AIDS, Blood System Inquiry: Some Seniors Infected

By David South

Today’s Seniors (Canada), July 1993

HIV-tainted blood transfusions given in the early 1980s have left some seniors with AIDS, but it is feared many are unaware of their HIV-positive status. 

Between 1979 and 1985 – before testing of blood products for HIV became mandatory – 266 transfusion recipients and over 677 hemophiliacs are known to have been infected in Canada, according to the Centre for AIDS Statistics. 

But the final numbers are unkown – estimates range from 400 to 1,000 cases of HIV transmission among the 1.5 million Canadians given blood products during this time. 

This uncertainty is fueling public concern. With such a serious public health danger, many are shocked by the confusing messages being sent by governments, the Canadian Red Cross Society and hospitals. 

But it took the report of an all-party Parliamentary subcommittee on health, released at the end of May, to shock the federal government into calling for a public inquiry into the blood system. The report is highly critical of the decision-making process involved in blood collection and distribution. 

“We have members of our group who are seniors,” says Jerry Freise, spokesperson for advocacy organization HIV-BT (Blood Transfusion) Group, whose wife was infected with HIV due to a blood transfusion. “And many of them went for years being misdiagnosed and treated for something other than HIV. Others have gotten sick, and one died without knowing it because nobody told him. 

“A classic case is Kenneth Pittman who was infected in 1984. The Red Cross found out in 1985 and they allegedly took two years to tell The Toronto Hospital. The hospital took two years to tell his doctor, and his doctor decided not to tell anybody. 

Infected

“Another couple, a lady of 59 and a man of 64, called us April 1. She found she was infected, and the reason she took a test is because her husband turned out to be HIV-positive three weeks before a transfusion in 1983. He had gone for years without a diagnosis from doctors.” 

This runs counter to the Red Cross’s story. 

“Whenever a blood donor tests positive for HIV antibodies, we go back and trace the prior donations,” says spokesperson Angela Prokoptak at the Society’s national office. “The Red Cross supplies blood to hospitals, so we know which units went to which hospital. But the hospital must go through their records to find who they transfused. 

“After identifying the recipient, the hospital contacts the recipient’s physician, and then they have them tested. There are of course limitations.

“Since 1987, the Red Cross has been advising people who may be concerned to consult their physician for counselling and advice.”

But subcommitte member Chris Axworthy, an NDP MP, found that hospitals and the Red Cross hesitated to notify former patients for fear of lawsuits. He says the federal government should show some leadership and stop passing the buck to other agencies and departments. 

Only two hospitals in Ontario – Toronto’s Hospital for Sick Children and Princess Margaret Hospital – have tried systematically to contact former patients. 

Ontario health ministry spokesperson Layne Verbeek says it is a laborious and costly task for hospitals to notify former patients. “We’ve always informed people if they are thought to be at risk, but many hospitals aren’t in the position to trace. If people are at risk or have doubts, they should be tested.”

Verbeek says recent media coverage has caused an increase in the number of people seeking HIV blood tests – requests for the test doubled after the Sick Kids hospital went public. The provincial government’s lab went from 700 tests per day to 1,300, but Verbeek says that has started to taper off. 

The ministry of health is happy with the number of people coming forward to be tested, says Verbeek. 

But Friese says the different players are more concerned about lawsuits than informing the public. He is especially upset at the Red Cross for not taking a leadership role in disseminating information. 

“The Red Cross and the medical system have failed miserably to contact people. Even today they are reticent to tell people they were part of a risk group and should get treated.” Friese feels the various governments and the Red Cross are leaving the job of informing the public to his group and the Canadian Hemophiliacs Society. 

Beat the drums

“It’s my job to beat the drums for the media while I’m dealing with my wife being infected? That’s my job, when these are the ministers of health?”, Friese says with anger.

The effect of AIDS on seniors isn’t new to US-based National Institute on Aging researcher Marcia Ory. She and colleagues helped sound the alarm back in 1989 with the book “AIDS In An Aging Society: What We Need To Know.” In the US, over 10 per cent of AIDS cases have occurred in people over 50. 

“Surprisingly, people have ignored older people and the AIDS issue,” says Ory. “You had older people in hospitals who might have complained about fatigue which was thought to be age-related. Older people aren’t as likely to be diagnosed as early because of the assumption that they are not at risk from AIDS.

“We don’t want older people in general to be overly fearful, but we want them to acknowledge the possibility, and to engage in good preventative practices if they are at risk.” 

Ron deBurger, director of AIDS prevention for the Canadian Public Health Association, would like assurances that the security of the blood supply has improved. 

“The subcommittee came to the right conclusion asking for a public inquiry,” says deBurger. “I would hope the terms of reference are broad enough to take a look at the whole issue of the safety of the blood supply, not only in terms of what happened in the past, but, more importantly, what’s happening today.”

Other than hemophiliacs, who require large quantities of blood, deBurger believes anybody who received one transfusion has a small risk. “If you had blood once, I think the odds are pretty long that you are going to end up with tainted blood. But AIDS does take eight to 10 years to manifest itself, and we might still be picking up pieces for the next four to five years that we don’t know about yet.” 

Friese recommends that anybody who received blood or blood products between 1979 and 1985 get an HIV test. If their doctor says it isn’t necessary, they should call the AIDS Hotline about anonymous testing. 

Anybody who has tested positive for HIV and would like support and counselling can call Robert St-Pierre of the Canadian Hemophilia Society at 1-800-668-2686.

For information on anonymous testing call the Ontario government’s AIDS Hotline in Toronto at 416-392-2437. For support write HIV-BT Group, 257 Eglinton Avenue W., Suite 206, Toronto, Ont., M4R 1B1. 

Read more of David South’s 1990s health and medical journalism here: Taking Medicine To The People: Four Innovators In Community Health

More from Canada’s Today’s Seniors

Feds Call For AIDS, Blood System Inquiry: Some Seniors Infected

Government Urged To Limit Free Drugs For Seniors

Health Care On The Cutting Block: Ministry Hopes For Efficiency With Search And Destroy Tactics

New Seniors’ Group Boosts ‘Grey Power’: Grey Panthers Chapter Opens With A Canadian Touch

Seniors Falling Through The Health Care Cost Cracks

ORCID iD: https://orcid.org/0000-0001-5311-1052.

© David South Consulting 2021

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Specialists Want Cancer Treatments Universally Available

By David South

Today’s Seniors (Canada), December 1993

A newly-formed group representing cancer doctors says it is fed up with the inhumane and bureaucratic approach to cancer care in Ontario. 

Dr. Shailendra Verma of Access to Equal Cancer Care in Ontario (AECCO) says he’s had enough. 

“My group has served the government notice that we’re fighting on our patients’ behalf,” says Verma, who faces gut-wrenching quandaries every day in his growing Ottawa practice. “In a public health system, I’m damned if I’m going to be divided into giving one set of patients a Cadillac treatment and the other Hyundai-type treatment; I don’t think that’s why we have a public health system.”

Verma says cutbacks to health care funding have meant that doctors must leap increasingly high hurdles to get the drugs their patients need. 

In jeopardy

While chemotherapy drugs administered in hospitals are still free, he says the important drugs necessary for patient comfort and treatment effectiveness are in jeopardy. 

These drugs were once free under the Ontario Drug Benefit Plan (ODBP), but now their status is tenuous. One drug, GCSF – which is crucial in helping patients between treatments of chemotherapy – is now listed under Section 8 of the ODBP and requires doctors to plead with the government each time for coverage. Often the bureaucracy moves so slowly that the course of chemotherapy is seriously disrupted, Verma says. 

“As an oncologist I’m particularly interested in ensuring everyone has access to all treatment. I think we are at a very sensitive crossroads. Over the last three or four decades we’ve developed certain treatments for diseases that more often kill than cure. And now we are at a point where we’ve got new treatments that can make the older treatments more effective. Or we’ve got brand new treatments that we are hoping to apply, and the one thing that is holding us back is cost.”

Cost

“The decisions are not based on science, they’re based on cost. It would not be an issue if treatments cost a penny a shot.”

Verma says colleagues can’t introduce some new drugs because the costs would be too high to offer it to everyone. So no one gets it.

“We have patients who walk in and say they would like to pay for it,” continues Verma. “Ethically, as a physician do you allow a patient to pay for it while sitting next to a similar patient who can’t afford it?”

Update: Cancer drugs that stay one step ahead may give patients 40 years of life (The Sunday Times, November 15 2020)

More from Canada’s Today’s Seniors

Feds Call For AIDS, Blood System Inquiry: Some Seniors Infected

Government Urged To Limit Free Drugs For Seniors

Health Care On The Cutting Block: Ministry Hopes For Efficiency With Search And Destroy Tactics

New Seniors’ Group Boosts ‘Grey Power’: Grey Panthers Chapter Opens With A Canadian Touch

Seniors Falling Through The Health Care Cost Cracks

ORCID iD: https://orcid.org/0000-0001-5311-1052.

© David South Consulting 2021

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Seniors Falling Through The Health Care Cost Cracks

By David South

Today’s Seniors (Canada), December 1993

When Orangeville senior Donald Potter was told he was too old to receive a bone marrow transplant, he paid $150,000 to get one in the United States. 

His case, recently made public by provincial Conservative leader Mike Harris, has raised the disturbing issue of health care rationing for seniors. 

Potter, who has Hodgkin’s lymphoma, says he was told the cut-off age is 55; since he was 64 at the time he needed a transplant, he was told last February it was too risky to obtain the procedure. Faced with a few months to live, he went to Rochester, New York, where bone marrow transplants were done on patients into their late 70s. 

Money

Potter believes the real issue is money. The government doesn’t have enough, so he couldn’t get the treatment that could save his life. 

Cost-cutting resulting from the provincial government’s social contract and expenditure control plans has left physicians with the quandary of serving more people with less money. This dilemma has led them to prioritize who gets services, though physicians maintain such decisions are based on many factors other than age, including lifestyle, prognosis and effectiveness of the therapy. 

Transplants

Bone marrow transplants are a particularly emotional issue for Premier Bob Rae, who in early October was driven to tears handling questions regarding rationing of this service. His brother died of lymphatic cancer in 1989 after a failed bone marrow transplant for which Premier Rae was the donor. 

“I can’t knock the system that hard, I just don’t feel the government spends the money properly,” says a calm and unresentful Potter.

Many seniors are frightened when they hear the government needs to make cuts, fearing they could be the first to go when it comes to allocating rationed services. 

“From the perspective of seniors it is a very scary time right now,” says David Kelly of Toronto’s Senior Link, a community social service agency. “Everything is being questioned, all our social services. Instead of looking at how to solve the problems, we’re just going to cut out things, and that’s going to be our solution. It doesn’t necessarily work.”

The issue of rationing services based on age is a dicey one. Ministry of Health spokesperson Layne Verbeek says the schedule of benefits makes no mention of age; and he’s right, because that would be unconstitutional. But when a doctor is presented with a fixed budget and a bulging sack of patients, the physician on the hospital ward has to decide who gets treated and with what. How a physician does this is theoretically based on a combination of factors, but doctors also have prejudices and misconceptions. 

Rationing

Many argue such queuing is a dangerous departure from the belief that the sick deserve to be treated. 

“Part of the problem is that few would admit to rationing on the basis of age alone,” says bioethicist Eric Meslin of Toronto’s Sunnybrook Health Science Centre. “Most clinicians I’ve spoken with and worked with recognize that age alone is not a relevant criterion. But most clinicians would agree age does play a role in thinking about limiting care.”

Meslin admits the idea of denying health services based upon age alone has been making the rounds among health care professionals. 

Ethics

“There has been a debate in the last seven years in North America over whether age-based rationing is ethically acceptable,” says Meslin. “There is of course a spectrum of views, including the very extreme that says after a certain number of years you have obtained your benefit from society and you should step aside and allow others to make use of those resources.”

Meslin doesn’t feel good about going through any kind of health care rationing without a public debate over society’s values and what to expect from the health care system. 

And he is adamant that anybody who focuses solely on attacking the high costs of high-tech medicine and an aging population is making a value judgement about how society should spend its money, not stating a fact.

“A clinician who chooses to discriminate based on age alone is not only unethical, but unconstitutional. Having said that, no clinician worth their salt would be telling the truth if they did not consider who the patient was in the fullest sense of the term, including their age. However, not giving treatment because they are 80 is a numbers game; there isn’t good enough data to support it.” 

Meslin suggests a public debate on rationing services needs to take place. 

Needs

“We need to ask the elderly population what they want. It may be that they don’t want the kind of things the researchers and clinicians believe they want.”

Kelly at Senior Link believes cuts to free drugs are already one example of rationing. 

“There are a lot of ways we can go about changing our social services without cutting income support or access to medication. The same goes for what procedures will be performed,” says Kelly. 

Potter’s case graphically shows the human cost of the heavy hand of bureaucrats in a public system trying to save money. But the high cost of U.S. health care also leaves a bad taste in Potter’s mouth. 

“In the States, the cost is horrendous. At least we have that protection. But I happen to be one of the unfortunate ones that fell into the wrong slot. And there’s a lot of people like me.” 

My background: 

CASE STUDY 5: GOSH/ICH Child Health Portal | 2001 – 2003

Hannah Institute For The History Of Medicine | 1992 – 1994

The archive for the Hannah Institute for the History of Medicine newsletter is held at the Wellcome Collection library in London, UK.

ORCID iD: https://orcid.org/0000-0001-5311-1052.

© David South Consulting 2017