Meet London’s nine-year (and counting) hospital patient

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Roger Foley was admitted to hospital in London so long ago, Justin Trudeau – now gone after nearly a decade as prime minister – was only three months into Canada’s top job.

The COVID-19 pandemic was still four years away, and the world would not know Donald Trump as a U.S. president – in his first go-round in the job – for another year yet.

More than nine years later, Foley is still at the London Health Sciences Centre (LHSC) where he was admitted on Feb. 5, 2016.

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The 49-year-old, who lives with severe disabilities that limit his ability to move and care for himself, doesn’t leave LHSC’s Victoria Hospital.

Foley gets few visitors to his sixth-floor room and is the first to admit that he doesn’t need the level of advanced medical care that Southwestern Ontario’s largest hospital provides. He’d rather receive home care by a team of his choosing, a departure from the norm in Ontario’s publicly funded system.

Instead, Foley remains in an inpatient bed after all these years – at the centre of a protracted legal fight that one expert calls a “three-way standoff” with LHSC and provincial health care bureaucracies over his care needs.

“He’s right in the middle of one of the most complicated policy questions in Ontario’s health care system,” said Rosalie Wyonch, associate director of research at the C.D. Howe Institute.

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“There’s always someone who doesn’t want what the public options are and wants their own choices. . . . This patient is at this ambiguous centre point of who should be responsible for their care and how much autonomy should they have in that choice.”

Foley, originally from the Ottawa area, has a significant, genetic neurodegenerative condition that limits his mobility. He can’t walk and relies on ceiling-track hoists to help him move. He also eats a pureed food diet because he has difficulty swallowing.

He’s been transferred between units at Victoria Hospital since he was first admitted, including the mental health, nephrology and sub-acute medicine departments.

In an interview with The London Free Press, Foley said he’d been living independently in his London apartment with the assistance of home care workers before his hospital admission in February 2016. But he claims the care he received was deeply inadequate and a contributing factor to his hospitalization.

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Shaken by his past home care experience, Foley has some very specific demands for the kind of supports he wants to receive and has spent years waging various legal fights to try to get them.

He’s sought, unsuccessfully, to get funding from the provincial government to hire specific home care workers of his choosing, almost as if they were his employees.

Typically, patients that qualify for government-funded home care are sent help from a service provider under contract with the province.

The self-directed funding for home care that Foley sought is not the norm in Ontario but is available in rare circumstances, including for children with complex medical needs and adults with acquired brain injuries.

“Right now, access to the directed home care funding would fix this,” Foley said, adamant that the typical home care funding regime in Ontario won’t provide him with adequate support.

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“It’s something that I need,” he said.

Foley said he still pays rent at his northeast London accessible apartment and wishes to return there, provided his home care demands are met. His name still appears on the building’s directory.

He said he doesn’t want to be placed in long-term care and has resisted a recent suggestion by LHSC that he should be transferred there.

“I’m still young,” he said, questioning the quality of care he would be able to receive in long-term care.

“I want to be a part of the community. I want to spend time with my family and friends in the community. . . . Why should I be confined to a long-term care room just because I have disabilities?”

Foley declined to give permission to his doctors or care team, who are bound by patient confidentiality rules, to speak about the particulars of his case with The Free Press.

Foley is an extreme example of a so-called alternate level of care (ALC) patient. That’s someone who no longer requires hospital-grade medical care, but remains in a hospital bed awaiting a long-term care or home care placement. Such bed-blocking patients accounted for 17 per cent of all acute care bed days in Canada as recently as 2022-23.

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“ALC patients take up more patient bed capacity than all the top 10 surgeries combined,” said Wyonch, a health system researcher who has extensively studied ALC patient flow.

“It’s probably the single-biggest hospital capacity issue. If we were to fix it, we would essentially no longer be at risk of acute care bed shortages.”

Furthermore, ALC patients cost the health system between $730 to $1,200 a day, as opposed to the $225 to $253 for long-term care placement.

Hospitals have a legal and ethical responsibility to provide care to patients who come through their doors, Wyonch said.

Foley is, in essence, LHSC’s problem.

“It’s the most extreme example that I’ve heard of,” she said, adding Foley is “in the sweet spot for where a case can become complicated.”

“Patient cooperation, and the coordination between community health operators and the hospital, need to work really, really well,” she said. “It sounds like that coordination is not functioning.”

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At LHSC, the average hospital stay was 6.6 days as of the 2023-24 budget year. Across Ontario, hospitals work to boost bed capacity by increasing patient flow through the system.

LHSC is bound by its legal duty to protect patient confidentiality and can’t discuss the specifics of Foley’s case. Still, the hospital acknowledged the situation is “extremely complex and has been the subject of extensive legal proceedings over many years.

“Hospitals like LHSC are not designed or resourced to provide long-term residential care,” LHSC, speaking generally, said in an emailed statement to The Free Press.

“When patient care needs are complex and they do not want to voluntarily leave and remain in acute care settings longer than medically necessary, it places significant strain on our ability to serve other patients.”

Again speaking generally, and not about Foley’s circumstances, LHSC said it works with partners in the health system “to support appropriate care transitions” but said there are “limited specialized resources for certain high-needs individuals.

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“Managing the needs of complex, long-term hospital patients is not just a challenge for the hospital and physicians, but also for patients and their families,” LHSC said.

In Ontario, the Progressive Conservative government’s More Beds, Better Care Act, which allows hospitals to move discharged patients into nursing homes not of their choosing or fine them $400 a day if they remain in hospital, provides some mechanisms to alleviate ALC pressures on hospitals, LHSC said.

However, “extremely complex or exceptional cases continue to present major challenges without clear or easily available solutions,” the hospital said.

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Tensions between Foley, LHSC and other health care system organizations have hit a boiling point in recent years, with various court battles and legal skirmishes.

In August 2018, Foley filed a statement of claim seeking $20 million in damages for alleged infringements of his rights under Canada’s Charter of Rights and Freedoms and $3 million in punitive damages against LHSC and others.

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Statements of claim contain allegations not tested in court.

Among other claims, Foley’s lawsuit claimed LHSC staff pressured him to pursue a medically assisted death, an end-of-life option he vehemently rejects, and unjustly refused to provide funding for the level of care he required.

Foley’s lawsuit, which was amended twice, was struck in its entirety last year by Ontario Superior Court Justice Robert Centa, who called it “inflammatory” and a violation of the rules for such documents.

Foley was ordered to pay $100,449 in legal costs to several defendants, including about $28,000 to LHSC. He is working to reopen the costs decision so he can restart the litigation, said Michael Alexander, a lawyer who is providing guidance to the self-represented Foley.

Foley has also resisted transfer to long-term care, a move he said LHSC suggested last year.

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In September 2024, Foley sent a cease-and-desist letter to Mount Hope, a long-term care facility operated by St. Joseph’s Health Care London, demanding the care home take no further action to admit him.

Foley said LHSC has made no further suggestions about transferring him to long-term care since.

Foley in May filed a complaint against LHSC with the Human Rights Tribunal of Ontario, alleging the hospital discriminated against him on the basis of disability by taking away a specific lighting accommodation in his room. Foley’s allegation against LHSC has not yet been tested by the quasi-judicial tribunal.

Foley’s situation – the legal fights and nine-year hospital stay – is extremely rare and unusual, but raises interesting questions about how much say people should be entitled to over the structure and form of their publicly funded health care, Wyonch said.

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In some places, such as in Quebec and Germany, self-directed funding for home care is the default, she said.

“What this patient wants rises to the legislative policy level,” Wyonch said.

“This particular patient and what he wants falls into a very specific crack that involves how we’re providing support, services or cash to hire services, as well as the institutional divisions within the health care system.”

Alexander, who is not Foley’s lawyer but is providing some informal guidance on the court process, said the people in charge have lost the plot through the various legal battles and ongoing disputes.

Alexander calls Foley’s situation Kafka-esque, a term – based on the fictional work of author Franz Kafka – coined to describe frightening, confusing, bureaucratic scenarios with a bizarre or illogical quality.

“Why hasn’t anyone stepped back and said, ‘Why can’t we help Roger get self-directed home care so we can send him home?’ Nobody is doing that. Nobody has ever done that,” he said.

“The system has consistently let him down.”

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