'The solution is assisted life': Offered death, terminally ill Ont. man files lawsuit

CTV National News: Lawsuit over home care A London, Ont. man is bringing forward a landmark lawsuit to demand the right for self-directed care. Avis Favaro reports.

A landmark lawsuit has been filed by an Ontario man suffering from an incurable neurological disease. He alleges that health officials will not provide him with an assisted home care team of his choosing, instead offering, among other things, medically assisted death.

“My condition is grievous and irremediable,” 42-year-old Roger Foley said from his bed at the London Health Science Centre’s Victoria Hospital in a video that was recently posted online. “But the solution is assisted life with self-directed funding.”

According to Foley, a government-selected home care provider had previously left him in ill health with injuries and food poisoning. Unwilling to continue living at home with the help of that home care provider, and eager to leave the London hospital where he’s been cloistered for two years, Foley is suing the hospital, several health agencies and the attorneys general of Ontario and Canada in the hopes of being given the opportunity to set up a health care team to help him live at home again -- a request he claims he has previously been denied.

“I have no desire to take up a valuable hospital bed,” Foley explained. “But at this point, it’s my only option.”

Foley suffers from cerebellar ataxia, a brain disorder that limits his ability to move his arms and legs. The condition leaves him unable to perform mundane tasks on his own, like feeding himself. He also has trouble holding himself upright. Because of the condition, he even has difficulty speaking.

“Unfortunately, my life story is narrated through the horrible prism of a progressive neurodegenerative disease,” Foley said with an audible tremor in his voice. “I have gone from being an active person to, on some days, not even being able to get out of bed.”

Because Foley suffers from a terminal and incurable disorder, he qualifies for medically assisted death. But Foley does not want to die -- he simply wants to live at home.

According to Foley’s lawsuit, which was filed on Feb. 14, the South West Local Health Integration Network (SW LHIN) -- the government-funded organization that facilitated his home care -- left him even worse off.

“I have been given the wrong medications, I have been provided food where I got food poisoning, I’ve had workers fall asleep in my living room, burners and appliances constantly left on, a fire, and I have been injured during exercises and transfers,” Foley claimed. “When I report(ed) these things to the agency, I would not get a response.”

Twice, Foley says he ended up in hospital because of the home care agencies contracted through the SW LHIN: once because of bad food, and a second time because the allegedly poor quality of care he was receiving left him contemplating suicide.

“Unfortunately, the Ontario health-care system and the Ontario home-care system has broken my spirit and sent my life into a void of bureaucracy accompanied by a lack of accountability and oversight,” he said.

Foley has asked to manage his own home care team. Doing that is called “self-directed care,” and Ontario recently created an agency called Self-Directed Personal Support Services Ontario (SDPSSO) to help co-ordinate such activities.

“I need self-directed funding in order to return to my home,” Foley said. “I need to be able to hire my own workers to build my (home) care to work with me”

Foley’s request to the Centre for Independent Living in Toronto (CILT), where he was directed to apply, was denied last year. Foley asked for a review of that decision, but his lawsuit alleges that the review process has been delayed multiple times as the CILT defaulted on deadlines.

So he hired lawyer Ken Berger.

“We don’t really understand why it’s not being solved and why we’ve had to file this lawsuit for Roger,” Berger, who specializes in health law, told CTV News. “We really didn’t want to reach this stage, but we were left with no alternative.”

According to Foley’s statement of claim, the only two options offered to him have been a “forced discharge” from the hospital “to work with contracted agencies that have failed him” or medically assisted death. Refusing to leave the hospital and unwilling to die by a doctor’s hand, Foley claims he has been threatened with a $1,800 per day hospital bill, which is roughly the non-OHIP daily rate for a hospital stay.

Foley’s statement of claim also alleges that his Charter rights “to life, liberty and security of the person” were violated when he was offered the above options without being given the chance to create a “safe and available self-directed assisted care option that would substantially alleviate his irremediable and intolerable suffering.”

“We believe that this is concerning,” Berger added. “It’s not right to not ensure that someone like Mr. Foley has assisted life first. You need to assist a person with life first, relieve their suffering, provide all necessary services first.”

Foley’s lawsuit has been filed against the Victoria Hospital London Health Sciences Centre, the SW LHIN, the CILT and Ontario’s Minister of Health and Long-Term Care, demanding the right to choose his home care team. He’s also suing both Ontario and Canada’s attorneys general for offering medically-assisted death without guaranteeing Canadians the option to receive proper care if they choose life instead.

“Before anyone… can even be considered for assisted death, they need to have all necessary services provided to help them relieve their substantial suffering,” Berger said. “There are serious constitutional violations that we’re alleging, and we believe that the current provisions for assisted dying are unconstitutional because it doesn’t require that necessary services are put in place to relieve someone’s suffering first.”

The London Health Sciences Centre, the South West LHIN and the Ontario Ministry of Health all told CTV News that they cannot comment on the case since it’s before the courts. Ontario’s Ministry of the Attorney General said it had not been served with the statement of claim, and as it “may be subject to litigation, it would be inappropriate to comment further.”

In a statement to CTV News, federal Justice Minister Jody Wilson-Raybould said the assisted dying legislation “protects our most vulnerable, while also providing for safe and consistent access to medical assistance in dying for Canadians across Canada.”

“I am aware of the claim that is currently before the Ontario Superior Court that challenges the constitutionality of the law,” she said. “We intend to defend the legislation, which is a fair and reasonable law that respects Charter rights.”

None of the allegations in Foley’s lawsuit has been tested in court.

The case has been more than distressing for Foley’s brother, Robert.

“There has to be more people out there in my brother’s situation -- this conversation needs to happen,” Robert Foley told CTV News in an emotional interview from Ottawa. “We need to take a look at what’s going on and why and fix it. My brother needs someone to listen to help.”

The managing director of the Institute for Research and Development on Inclusion and Society, which advocates for people with disabilities, calls the case “profoundly disturbing.”

“I think it reflects concerns that a number of ethicists and legal experts across the country have been expressing about the lack of safeguards in the system,” Michael Bach told CTV News.

“This is the problem: medical assistance in dying is come to be seen as another health care intervention when that was never the vision for this,” he said.

“I think it is very timely that this case comes forward because it makes absolutely clear that the safeguards are not in the system.”

According to Trudo Lemmens, a professor and Scholl Chair in Health Law and Policy at the University of Toronto’s Faculty of Law, Foley’s allegations -- if true -- are “very troubling.”

“If true, we would have here an instance of a patient receiving an offer for MAID (medical assistance in dying) while the patient precisely complains about receiving substandard levels of care,” Lemmens said in an email to CTV News. “MAID should not be introduced as an option to someone who complains about sub-standard care and clearly not to someone who is suicidal.”

Berger said his client is “resilient and will fight to the end.”

“And I will assist him fighting to the end so that he gets assisted life and that necessary services are provided first and foremost.”

With a report from CTV’s medical affairs specialist Avis Favaro and producer Elizabeth St. Philip