It is as simple as this: One Sunday in September, Tracy Dort-Kyne flipped over the handlebars of her bike, and woke up a quadriplegic. She was 41, between jobs in the finance industry, and a single mom with three young boys. Once she is out of rehab, she will need a home renovated for a wheelchair, a handicapped-accessible van and round-the-clock care, likely for the rest of her life, to make sure, among other risks, that she doesn't choke to death while no one is watching. Over the course of her life, that could cost as much as $10-million.
Through the health-care system, though, she may not receive much more than a daily bath. She was job hunting when she had the accident, so she had no insurance through work. She's divorced, so she has no spousal benefits. She had life insurance, but hadn't thought of private disability coverage. Yet, in a few months, she'll be wheeled to the door of the Lyndhurst rehab centre, placed in her family's care and left, essentially, to find her own way.
Not long ago, Ms. Dort-Kyne may well have died before she reached the hospital. But medical advances have significantly improved the outcomes for people who suffer catastrophic injuries such as spinal-cord or brain damage and for those left paralyzed by diseases such as cancer.
We know public health care is creaking under the weight of our aging bodies, with home-care needs growing exponentially for grandma. But if the system chooses to save a life – whether it's a premature baby or a 40-year-old single mom – what does it then owe to that life? The problem highlights the inefficiencies in the system, and how little insurance most Canadians have for an unexpected catastrophic injury.
Bill Adair, executive director at the Canadian Paraplegic Association Ontario, says many people are stunned to find out the health-care system largely stops at the hospital door. "We have achieved a state of excellence in acute care, and then we completely let people down, and we set them up for failure."
How well we care for the sickest comes down not just to public will, but to the public purse. "A lot of people don't want to talk about costs in an ethics conversation," says Anita Ho, an assistant professor in applied ethics at the University of British Columbia. "But we have to put it on the table. And we have to decide what's a reasonable level of care."
In other words, having saved Ms. Dort-Kyne, how much will we spend now to maintain her quality of life? What's more, when she had the accident, she was doing exactly what Health Canada would urge, living a healthy, active lifestyle. But what responsibility must individuals take, especially if we choose to rock-climb or snowboard off-trail?
"There are fiscal realities," concedes Steven Fletcher, Canada's Minister of State for Transport – and the country's first quadriplegic MP. However, he adds: "If we, as a society, choose to save the lives of people with very dramatic injuries, we, as a society, must do everything to help those in the people in the long term. To not provide them with the resources to live dignified and meaningful lives is almost cruel."
Every year, about 1,500 Canadians suffer a spinal-cord injury. In the past, the majority were young men in car accidents, but today, paralysis is increasingly caused by diseases such as cancer or by elderly falls – both markers of our aging population. The risk also has risen with the growth of bicycle culture and the increasing popularity of extreme sports.
Rene Faucher was doing his best to stay fit and serve as a role model for his three young children when he took to the ice for a recreational hockey game in January, 2010. While playing he tripped and smashed head-first into the boards. He was left paralyzed from the chest down.
Today, Mr. Faucher, 42, has the use of his arms, and after months of rehab he can lift himself into bed. How much more he can improve is a guessing game.
He was once named one of the top 40 businessmen under 40 in Ottawa, but not long before the accident he had offloaded his software start-up under less-than-ideal financial circumstances; his disability coverage had lapsed in November. He was waiting for word on a job, and didn't have any private insurance.
(According to industry figures, only about 400,000 Canadians have long-term-care insurance; 1.4 million have critical-illness coverage through work or private insurance.)
"You feel you are on your own in many ways, not just financially, but emotionally and psychologically," Mr. Faucher says on the phone from his Ottawa home. In the hospital, he says, "you have this whole support network, and all this care around you, and the reality is you have to leave it."
Patients such as Mr. Faucher recover faster and more fully when good after-hospital care is provided – they re-enter the work force sooner and are less likely to end up with complications that put them back in costly, overcrowded acute care. An Ontario study in 2008 found that providing respiratory care at home for 27 spinal-cord patients would save the system $5-million a year: It costs about $1,200 a day to keep one in a hospital bed, compared with $25 an hour for a home-care worker – even around the clock, that's half the price.
Mr. Fletcher, the Transport Minister, suffered his spinal-cord injury when his car struck a moose in 1996. He says the level of care provided is often based on the assumption that the disabled person will stay remain housebound or in an institution for the rest of their lives. He is still haggling with Manitoba's public auto insurance over financing his care; the Supreme Court refused to hear his case asking that the province cover the cost of the 24-hour attendant he requires while in Ottawa. (Currently, the cost is shared between the provincial insurer, Manitoba health care, and the House of Commons.)
In part because of the publicity around his case, in 2009 Manitoba's legislature increased the benefits for people catastrophically injured in car accidents.
But how much coverage is reasonable? "It would be nice to think that everyone in an wheelchair unable to work is taken care of," says Bruce Van Natto, a 50-year-old engineer in Montreal who became a paraplegic after a cycling accident. "I personally don't think that's feasible, but they can be a lot more efficient with the money they have."
Mr. Van Natto's accident happened three years ago, while he was working in Dubai; he covered the cost of returning to Canada for treatment. But after leaving acute care and moving into his sister's home with his wife and two children, he found it hard to gain access to programs: "It's very bureaucratic."
He knows he has been fortunate – his former employer, Bombardier, rehired him, covering the cost of an accessible home in Montreal. But the family still struggles financially, especially since his wife serves as his attendant, driving him to work and accompanying him on business trips, leaving her unable to work herself. He must pay for a portion of his prescription costs, as well as his catheter and other supplies. "I am still digging into my savings," he says.
Many people rely on friends and families. Mr. Faucher's wife, Dianne, can cover most of his prescriptions and supplies through her work plan. He can manage with a couple of hours of home care a day, and bought a membership at the YMCA, where volunteers help with his rehabilitation. But when it came time to move, retrofit their new home and get a van that could handle his transportation, the family was rescued by friends, who raised more than $75,000.
"We were lucky," he says. "My circumstances hit a nerve because of hockey, and because of my age with a young family. … Without it, I don't know what we would have done. It would have been incredibly difficult."
If Ms. Dort-Kyne had been driving her car when she went off the road, she would have had access to $1-million from Ontario's no-fault auto insurance. If she had been struck by a car on her bike, she would have received a settlement through the driver's insurance. Instead, she was training alone for a cycling race, the very model of fitness in an obesity-plagued society.
Her accident happened the Sunday before Labour Day while she was coasting down a hill near Collingwood, Ont. Her front wheel lost traction on the gravel shoulder. She had a split second to react: Fall left and slide on the pavement, perhaps into traffic, or steer right into the roadside grass? She went right – straight into a hidden drainage ditch.
A passing student named Mike Hermanovsky found her crumpled in the ditch, her hands limp against her face. "Can you lift my head," she kept asking him, "so I can breathe?"
Here, the health system operated at its finest: She was soon in a helicopter to Toronto's Sunnybrook Hospital, where she received specialized intensive care and, miraculously, began breathing on her own with in a few weeks. Now, at Lyndhurst, she receives daily physiotherapy.
So far, her part of the bill has come to no more than $45, her share of the helicopter fee. But in six months, when she expects to leave the centre, the bills will pile up quickly. Her sister has already moved from the United States to help their mother look after Ms. Dort-Kyne's three boys, but they expect they will need to move, to find something suitable in Toronto's expensive housing market, where her social support and doctors are located.
Ms. Dort-Kyne has some savings and some equity in her house, but "the money I have probably couldn't even pay for two years of care for myself and maintain a decent lifestyle for my children," she says, sitting in her wheelchair in the Lyndhurst cafeteria.
Home care provided by the province is typically capped at 21 hours a week. The remaining costs could run up to $15,000 a month, says Chris Collins, a personal-injury lawyer who has been advising Ms. Dort-Kyne. And that doesn't count additional expenses, such the $40,000 wheelchair that will need to be replaced about every five years.
"It's almost incomprehensible," says her brother, Robert Lendvai.
Her story also raises the question of why someone hurt driving a gas-guzzling vehicle receives greater compensation than someone biking or engaging in a sport. In Australia, a national commission tasked with that question has produced a proposal for a National Injury Insurance Scheme designed to cover the lifetime care and support needs of people who get a catastrophic injury, however it happens.
The commission has estimated the cost would be $830-million – roughly $35 per Australian – and has proposed that it be in place for vehicle accidents by 2013 and all catastrophic injuries by 2015.
Until Canada adopts a similar system, Ms. Dort-Kyne's case will remain an extreme illustration of why it's important people seek private insurance when out of work. Between a soft economy and a work force that has become accustomed to changing jobs, more and more people are spending stretches of time unemployed, voluntarily or not.
But not many affordable products cover what Ms. Dort-Kyne faces. Long-term-care insurance is expensive, relative to the odds of needing it. Long-term-disability insurance is more affordable, but it typically only replaces lost income. Critical-illness coverage will provide people with a lump-sum payment should they develop any of a list of diseases or disabilities. (About $120 a month allows $200,000 of coverage.)
But where does it stop? Should people who ride bikes be legally required to take out insurance, or those who climb mountains? If, as a B.C. cabinet minister suggested last January, governments should tax smokers at a higher rate, what's our responsibility to people injured while playing sports, an activity promoted by the government?
For now, Ms. Dort-Kyne's main focus is to get home with her boys, and eventually back to work. She has been breathing on her own since a few weeks after the accident, and she has able to move her head and make small shrugs with her shoulders. She's hoping to learn to turn that into more movement in one arm, enough to use devices. "I want to just get things done and move forward," she says.
Friends and community groups have raised some money, but the family will bear most of the multimillion-dollar load. Whether they can manage it is a question for every Canadian, who could, by bad luck, end up in her situation some day.
"Lightning strikes and you never know where; in a split second, life changes forever," Mr. Adair says. "There will be three or four more people like Tracy every day. We can do better."