HELPING LIVES

Finding ways to help lives
Working around system only way to deliver quality care in Ontario

In a week of screaming and shouting, whining and cajoling, there is one man who walks through the doors of Emergency at Toronto East General Hospital with a different strategy altogether.

He is Mr. Polite. His plan is to kill the system with kindness in the hope of faster, better health care for his brother-in-law tonight.

Mr. Polite knows a little something about medicine, and asks for a check of his brother-in-law's hemoglobin levels.

He fears his ailing relative, a burly man who fills the air with sighs, may be bleeding internally.

At around 6 p.m. they are sent to Room 16. Three hours later, they have yet to see a doctor.

"I know you're busy," he apologizes to nurse Brenda MacDonald, who has seen this approach before.

"The doctor will be with you shortly," she answers.

He responds with not one but two profuse thank-yous. But as the hours melt away so, too, do his manners.

By Hour Four, the ingratiating smile still fixed on his face, Mr. Polite offers another double thanks, but cannot restrain himself from adding a brittle jab: "I though maybe the doctor went home or something."

And so it ends, where it began: An overflowing Toronto East General Emergency room, well into Code Zero — hospital shorthand for bed shortage — for the fifth time in the week The Toronto Star team canvassed the system in late March.

As we look back on those seven days, it is clear that we have seen not one, but in fact a dizzying array of fragmented systems.

From family physicians to the hospital, from the walk-in clinics to the community health centres, from home care to the patchwork of services that scramble to catch the marginalized, each of east Toronto's many gateways to health care is structured and funded to serve its own cause. There is minimal consideration of the impact it may have on others, and by extension on the total health of the patient.

The challenge of managing such divergent services can be likened to hockey. Imagine 17 of Toronto's Maple Leafs on the ice trying to stickhandle 17 pucks at the same time. Too often, the players in health care are unable to move their patients smoothly toward the goal of getting better.

Health care professionals across Ontario save or improve thousands of lives every day, but not without a good deal of frustration and anxiety at what is, after all, an inexact science. Ontario's health sector does not make it easy to get the care you need in a timely and seamless way. Instead, it functions mostly because the people in the "system" — nurses, home care workers, hospital bed allocators, street workers, doctors — work around it.

Hospital staff play an elaborate game of chess with patients, to get them into the right beds as quickly as possible, then again to get them out. Home care agencies are forced to make heartbreaking choices between clients and their needs, while some of their staff in the field put in unpaid hours to fill the gaps. When they can't, or won't, some of those clients end up in hospital — the very place home care is supposed to keep them out of.

Meanwhile, communication problems hamstring the health care system. Privacy laws prevent different agencies from sharing your medical information, but that line is crossed every time nurses talk to support workers or doctors call colleagues across town to get the medical history needed to treat patients properly.

Bureaucratic jargon is another stumbling block. With its mystifying labels — what is a personal support worker, a community access centre, a community health centre, a community care worker? — the health care sector begins to feel like an echo chamber, a bewildering world to step into when healthy, let alone sick and vulnerable.

Sadly there is no magic pill, but a thousand different tonics that might make for better health care. Some are straightforward, and partially under way. Long-term care, for example, is getting more money. In 1998, the province pledged to build 20,000 new beds by 2004, but it's not happening fast enough to alleviate the logjam in hospitals. Only 4,676 new beds have opened so far.

Still, the province would do well to take a close look at what it spends on prevention. Not just on public education, but practical, in-the-trenches measures that will keep people out of hospital; like re-examining the fee schedule for family doctors, so house calls are worth their while, and rewarding those who spend more time with patients who have complex needs.

When it comes to home care, the answer is blindingly obvious and has been there since 1996: Follow-through on the recommendations of Duncan Sinclair and the Health Services Restructuring Commission by investing properly in home care. The province took half of a two-step process, eagerly cutting hospital funding and closing beds, while failing to invest in home care to the levels the commission said was needed.

Most of all, however, Ontario must grapple with how the pieces of the health care puzzle are organized and funded. Is there a better way? Every other province has created, or is planning, some form of regional health authority. The goal is to have the health needs of one community served through the umbrella of one administrative and funding gateway, to avoid duplication, improve co-ordination and make some significant gesture toward continuity of care.

It's not hard to find examples of Ontario's scattershot approach to health care. Take the Sherbourne Health Centre, for example.

Launched by then-health minister Elizabeth Witmer two years ago, the Sherbourne has so far been given $12 million in public money — without treating a single patient.

With a staff of 12 and counting, the Sherbourne is an example of good intentions run amok — and proof positive that the health care system's woes aren't simply a matter of not enough money.

Hurriedly proffered to still the uproar over the closing of the Wellesley hospital, the Sherbourne's mission is to be an ambulatory care centre, treating patients who might otherwise wind up in emergency rooms and also providing an infirmary for the homeless. But instead of going toward equipment and services, money sent to the Sherbourne Centre has been spent on renovations, planning and development, including focus groups, surveys and the hiring of a research evaluator to determine what kind of infirmary the homeless would prefer.

Money was even set aside for the creation of a corporate logo to symbolize Sherbourne's brave new approach to health care. Ontario's Ministry of Health paid $8.1 million for a prime piece of downtown real estate — the six-storey former Central Hospital building, overlooking the Victorian greenhouses of Allan Gardens.

When interviewed last year, Sherbourne chief executive officer Suzanne Boggild said she was "confident" the centre would be up and running by now, replete with a medical director and a staff of 50.

Today, Boggild smiles when reminded of the prediction.

"Oh brother," she says. "That's optimism for you. It's frustrating."

Boggild now admits it could be another year before the centre opens its doors. There's no medical director and no Sherbourne staff deliver services to patients. Boggild does note, however, that Sherbourne is reaching out to other agencies, including providing free space above its renovated offices for a chiropractic clinic with a roster of patients.

Boggild blames the province for being slow to roll out program money. "The government has not stepped up to the plate and enabled us to get services going."

But it's not clear there's any need for Sherbourne's main goal — to provide ambulatory care services. An August, 2000 review of Sherbourne's mandate — commissioned by the Ministry of Health, and obtained through the Freedom of Information Act — concluded that a primary care clinic at the Sherbourne was a "low priority" and would duplicate existing services.

The Ministry of Health is the first to admit a lot of time and money have gone into the Sherbourne with no final plan in sight. Yet the province is hopeful — it gave $2 million in operating expenses in the first four months of this year.

"Two million dollars in operating expenses when we're not seeing patients to me seems like we have a commitment," says Gord Haugh, spokesperson for Health Minister Tony Clement.

The difficulty, he adds, is in defining the Sherbourne's role "exactly," so it doesn't duplicate other services in the area and answers community needs.

One can't help but wonder what might become of the estimated $21 million in renovation funds the Sherbourne has requested to become fully operational. Take the planned homeless infirmary, for example. The Sherbourne spent $250,000 of a $370,000 federal grant collecting opinions of the homeless on what they would like in their new sick bay. Yet the fourth-floor space set aside for the project remains empty.

As Sherbourne awaits a new cash infusion, at least one other agency has moved to fill the gap — without any direct funding from the government.

"Guys weren't getting care. Guys were dying in the street," explains Dr. Tomislav Sloboda, medical director of Seaton House, Canada's largest men's shelter. "There's clearly a need and we're filling it."

Thanks to a $359,000 gift from the Rotary Club of Toronto, Seaton House has managed to open more than half the beds in its planned 30-bed infirmary, including wheelchairs, IV poles, blood pressure monitors and an electrocardiograph machine.

Sloboda readily admits the Seaton House initiative is only a partial solution. Infirmary space is still lacking for homeless women, children and family groups.

But Sloboda urges that such beds should be created in shelters serving these populations rather than stand-alone facilities such as the Sherbourne. "If you really want to take care of the homeless, you have to go where they are."

Even as the Sherbourne passes time in its multi-million-dollar facility, doing focus groups and designing corporate logos, the South Riverdale Community Health Centre has been pressing the province unsuccessfully for more money to hire more doctors, in the hope of making a dent in its sizable list of people waiting for a family doctor.

Home care providers says they could take a fraction of the Sherbourne budget and serve thousands more clients, or boost the care given to the ones they already have. Or, they say, they could help Bev Morrow, a 67-year-old retired autoworker, get out of his expensive bed in Toronto East General and into a nursing home.

Late into Hour Four of their wait, Mr. Polite makes the startling discovery that a doctor examined his brother-in-law an hour earlier. Mr. Polite didn't see him — because he was a she.

Then the wait for a blood specialist begins.

By Hour Five, he tries the personal approach, but memory fails him.

"Hi Debra?" he asks the nurse.

"Brenda," MacDonald replies.

"I'm not trying to be difficult. It seems to me from 6 o'clock to 11 o'clock is five hours."

Told once again the doctor will be along soon, Mr. Polite begins to unravel, launching into a harangue about how Prime Minister Jean Chrétien is killing health care. Briefly regaining control, he ends with yet another double thanks.

But a few minutes later, a hush falls over the ward. All ears are directed toward Room 16, where Mr. Polite has launched a diatribe at the absent doctor, the entire health-care sector, the Prime Minister and his neighbour's bloody dog.

As tempting as it may be to hang medicare's problems on such facilities as the Sherbourne Centre, it is quite clearly a symptom of a much larger dysfunction.

Much of that boils down to communication. And make no mistake — seniors coming into emergency departments with shopping bags full of drugs from various sources is a communication problem. Harsh as it may sound, an elderly woman gets dizzy, she falls, she costs us a fortune.

Many of the community agencies we visited in east Toronto belong to a coalition called Silos to Solutions, which aims to move beyond the "silos" in which they function to operate more as a team. Anxious to be seen as part of the solution, they're not waiting for the province to organize them. The group believes one of the quickest ways forward is an integrated computer database, for starters, one that would allow for the free flow of vital patient information between the various fragments of the system.

"The quality of care would be improved if we had better access to medical information from other agencies," says Dr. Jeff Tyberg, Toronto East General's chief of emergency. "Information is critical, and getting it quickly in real time would be beneficial to patients."

Tyberg estimates 20 per cent of the nearly 200 patients treated in Emergency each day suffer unnecessarily because of a lack of information about their case histories. That problem is compounded when the patient leaves the hospital, since there is no system in place to notify family doctors that their patient was even admitted. If doctors are notified, news of the treatment usually arrives a week later by mail — after the time the patient is most in need of follow-up care.

Tyberg and others envision a database that would allow them to input a name and instantly access the patient's medical history and drug prescription information. It could provide varying levels of information to member agencies, alerting a Meals on Wheels program that a client has been discharged, for example, without releasing medical information.

Many hospitals and community agencies already maintain their own databases with detailed patient records. The barriers to linking those systems are twofold — money and privacy.

The Silos group has proposed a pilot program to connect the Toronto East General Hospital with four of east Toronto's agencies at a cost of $300,000. But the resulting efficiencies would easily cover those costs, says Jim Armstrong, chief executive officer of Wellesley Central Health Corporation, a member of the Silos group.

"We are wasting resources through all this chaos," he says. "Physicians spend hours trying to put coordination of services together for patients. It's a daily struggle that looms pretty large."

So does the thorny issue of patient privacy. Canadians have come to accept that their personal financial information travels instantly via computer; but we have yet to debate the same for private medical information.

Securing any such network is essential, agrees Toronto physician Dr. Paul Zolan. But he believes moving health care to the information age is the only way forward.

"We sometimes have to order lab tests redone even if they were done recently because we can't get them. We are paying a fortune to reinvent the wheel.

"Society hasn't agreed that personal information should be shared. But it is an issue we have to raise for the safety of patients."

There is another thorny issue crying out for debate. It is safe to assume the ever-expanding medical technologies will always exceed society's ability to pay for them. Life expectancy is soaring into the 80s, and by the time Generation X gets there it may well be 100. We will always be able to do more than we can afford to keep our bodies going.

Exactly what will we pay for? Exactly what is medically necessary? What do we as a society expect should be covered by the public purse?

At the beginning of our week in east Toronto, we met Daniel Harkins. Almost 89, and suffering from a catalogue of ailments, Harkins died alone in East General. His life in many ways was our deepest fears realized — to be old, alone and ailing after suffering at the hands of an abusive landlady. But in his final years, Harkins had the support of community workers from Senior Link, who drove him to medical appointments, made sure he was eating properly and bought him warm clothes.

Harkins left no estate to speak of, but in cleaning out his apartment Senior Link staff found about $20 in loose change. They're using it to buy a plant in his name for the backyard at Jean Dudley House, the supportive housing building where Harkins last lived.

We also met Seerojanie Nancoo, a double-leg amputee living at East General for the past year because she couldn't get a handicapped-accessible apartment in the city. Since her story appeared in The Star on Monday, Nancoo has received offers of housing, and her social workers are hopeful she will soon have a place to call home.

There is no happy ending yet for Bev Morrow, who continues to occupy a bed at East General while waiting for a subsidized spot in a nursing home.

In the hospital this week, an elderly woman looking for home care was asked what she needed. Referring to the personal support worker profiled in the Code Zero instalment on home care, she told the nurse: "I need a Maria Raposo."

As we travelled from the Emergency department deeper into Toronto East General and far beyond its walls, we saw the gaps and cracks and brick walls that await the unsuspecting, unquestioning patient.

The lesson was clear: We must be our own best advocates, or find someone who can advocate for us. We must speak up and speak out to get the care we need, to overcome the barriers between the pieces of the health care puzzle.

But there will still be times when all the advocacy, all the questions, all the pointed questions and ingratiating smiles in the world cannot make the care come any faster.

By Hour Six, Mr. Polite steps slowly into the triage area, shoulders drooped, sighing so heavily his breath sours the ward. Like a bit player in a Greek tragedy, he raises his hands to the heavens: "Everyone's trying to be polite and everything ..."

But he is spent now, resigned to fate. Mr. Polite calls his wife and tells her not to wait up. He waits out the midnight hour, conferring quietly with his brother-in-law. He is a spent force.

At 1 a.m., the blood specialist steps into Room 16 and announces the patient must stay the night for tests.

The seven-hour vigil is over.