A disabled man's fight for life in an age of MAiD

If euthanasia is considered a right, then so too should self-directed home care

Roger Foley is a leading activist for the rights of the disabled, including his own. A hero to associations for the disabled, he is often considered a thorn in the side of health bureaucrats. Recently, an account of his case — emanating more sympathy for the bureaucrats than for Foley, alas — was prominently featured in these pages.

Foley suffers from a grave neurodegenerative affliction, spinocerebellar ataxia, which renders him almost completely physically dependent on caregivers. Cognitively normal and technologically skilled, he enjoys a rich life of the mind. In spite of what most Canadians would consider the grimmest of circumstances — which shamefully includes persistent reminders from carers that he has a right to euthanasia, which he just as persistently rebuffs — Foley remains life-affirming and bullish in pursuit of more humane and empowering care conditions.

Foley has been a resident for nine years at London Health Sciences Centre’s (LHSC) Victoria Hospital as an “alternate level of care” patient, who doesn’t require the acute care Victoria is designed to provide, or, more pejoratively, a “bed-blocker.” The LHSC wants him transferred to a long-term care facility. Foley refuses this option. He yearns to return to his apartment as an integrated member of his community, surrounded by friends and family.

The years-long clash over Foley’s future has been mapped in litigation. Additionally, he recently filed a complaint against the LHSC with Ontario’s human rights tribunal because his hospital replaced the special lighting in his room, which he needs because his disease causes extreme photosensitivity, with ordinary lighting. This has, according to emails from Foley and his legal adviser Michael Alexander, caused serious debilitating reactions he fears may prove fatal.

Foley wants to live at home, supported by what is known as self-directed funding (SDF) (or individualized funding) for 70 hours a week. SDF, in which home care money follows the person and allows them to hire their own carers, is quite a different program from typical agency-controlled home care, which in the past proved unsuitable for Foley. In fact, several life-threatening mishaps during his home-care tenure were what drove him to the hospital.

With SDF, Foley could choose registered nurse carers with a specific interest in and deep knowledge about his condition and pay them at a higher hourly rate than uncredentialed agency support workers. Motivated for long-term service, carers interested in Foley’s affliction would also, in effect, be choosing him. Such carers serve a maximum of 3 to 4 clients, while agency-provided home care support workers may serve up to 20 patients and are unlikely to have special expertise with spinocerebellar ataxia.

Foley has recorded statements by hospital personnel telling him he costs Victoria Hospital more than $1,500 per day, which adds up to at least $548,000 per year. Home care by personal support workers would cost $38 per hour for 10 hours per day, based on a figure Foley says he received from home-care company Gotcare. This would total $138,700 annually. Home care by a registered practical nurse, at $45 per hour for 10 hours a day, would cost $164,000 a year. (For emergencies, Gotcare can provide area caregivers rapidly through an app.)

How many disabled people choose MAiD because their will to live is sapped by the infantilizing strictures of institutional life or forced transfer to a care home far from loved ones, even though a cheaper and empowering alternative is available? It is to Foley’s immense credit that he has bent his muscular will to insisting upon self-directed care, which is already a right in many western countries, such as the U.S.,Australia, New Zealand, Ireland and Scotland.

It almost became a right in Canada too. In 2015, the Ontario Ministry of Health and Long-Term Care introduced “Patients First: A Roadmap to Strengthen Home and Community Care,” a plan which outlined the province’s intent to introduce a self-directed care option to patients.

“Putting patients first means giving clients and caregivers greater say in choosing a provider and how that provider delivers services,” read the report. “Over the next two years, we will begin to offer a self-directed care option, in which clients and their caregivers are given funds to hire their own provider or purchase services from a provider of their choice.” Unfortunately, it never really got off the ground and was “paused” in 2016, according to a local health network briefing obtained by Foley, which he shared with me.

Since SDF would offer immeasurably better quality of life for Foley, free up a bed in the hospital and save LHSC a great deal of money, I’m hard-pressed to see the downside here. C.D. Howe Institute associate director of research Rosalie Wyonch provides additional support for my perspective. Patients like Foley, she told Postmedia earlier this week, “take up more patient bed capacity than all the top 10 surgeries combined…. 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.”

Euthanasia, for those who want it, is considered a human right in Canada. Self-directed care for those disabled Canadians who do not want MAiD should also be considered a human right.

Foley is only 49 years old, and hopefully has many years of productivity and social pleasure in prospect. Compassion, reason and morality are in accord: Let him go home on his own terms.