Op-Ed: Death by COVID-19 is not my choice

Former Expositor editor Diane Sims is continuing her battle to ensure that home-care workers are mandated to have the COVID-19 vaccine. Ms. Sims is currently in palliative care in her Stratford home.

EDITOR’S NOTE: This article, written by former Expositor editor Diane Sims, first appeared in the October 28 edition of the ‘The Lawyer’s Daily,’ an online publication aimed at the legal profession, the editor of which, Peter Carter, also happens to be a former Expositor editor. “This article was originally published by ‘The Lawyer’s Daily’ www.lawyersdaily.ca, part of LexisNexis Canada Inc.”  

STRATFORD – The struggle of where a person’s privacy and human rights end and mandated vaccines begin is in my face with personal support workers (PSWs) mere inches away.

Are health-care workers’ rights absolute? That question engages Canadian institutions, agencies and all levels of government. And my husband, Dennis Thomas, and me.

Am I of value as one person for another’s health information to be disclosed?

I am not a lawyer but a writer in palliative condition who depends on PSWs five or six times daily. I must know if they are COVID-19 vaccinated. I am immunocompromised and extremely at high risk of contracting the virus, though double-vaccinated. The provincially funded agency that employs my PSWs won’t divulge vaccine information, citing privacy rights. This, despite a blunt letter from my physician stating the virus could kill me.

“I must make it very clear that I do not support the exposure of my patient to unvaccinated health professionals under any circumstances. Such exposures constitute a grave danger to her health,” stated Dr. Sean Blaine, in a letter to the agency.

I have end-stage multiple sclerosis, had multiple surgeries for ovarian cancer and now battle a devastating new condition. Sometimes it really does suck.

Discussing the virus and vaccine is part of everyday conversation, the lead item of every broadcast, and opinions have been willingly shared by many PSWs. I have a rotation of approximately 12. Most of them eagerly shared dates of their first shots and we celebrated their second with gloved high-fives.

Four workers spit words of the “evil poison,” how the first shot shoots microchips while the second “boils the internal organs,” amidst myriad conspiracy theories. I can’t ask about others.

So, Dennis and I made difficult decisions: I cancel bookings with unvaccinated workers or with whom I have no information; Dennis works as a full-time caregiver and for an employer; and I went public with The London Free Press, The Globe and Mail, CBC radio across Ontario and the jewel, The Manitoulin Expositor, picking up my story.

“Vaccine mandates are essential in health care … they have to be universal, unambiguous and have clear deadlines and punishing consequences if violated,” wrote André Picard after interviewing me for his Oct. 5, 2021 column in the Globe.

Ontario Premier Doug Ford ignores the vital wing of home care. He mandated health-care workers in long-term care facilities be vaccinated, only asking for consultations from others. The Council of Ontario Medical Officers of Health recommended on Oct. 19, “mandatory vaccination of health-care workers in other elements of the health care system such as … home-care … should be considered to protect vulnerable patients.”

Some provinces, such as British Columbia, have mandated health workers be vaccinated. As did Quebec, opting for short-term pain in terms of an unvaccinated workforce shortfall. But they switched to the political optics of short-term gain, giving workers another month to decide “shot or not.”

But I understand employers face complicated and ever-changing virus updates. An article released in August by the Toronto legal firm BLG states employers “must determine whether the obligation to protect an employee’s health and safety justifies the encroachment upon employees’ privacy and human rights protections under Canadian law. Unfortunately, the answer to this question is not obvious.”

Exactly, I get it. My PSW agency can’t ask clients if we are vaccinated, although their employees work inches away from us.

However, according to a fact sheet pertaining to the disclosure of personal information issued by the Ontario Information and Privacy Commissioner, exceptions are permitted, including urgent situations calling for compassion.

One is for Public Interest and Grave Hazards: “If there are reasonable and probable grounds to believe it is in the public interest to do so, and the record of information reveals a grave … health or safety hazard to the public, heads of institutions are required by the Freedom of Information and Protection of Privacy Act and the Municipal Freedom of Information and Protection of Privacy Act to disclose records to the public or to affected persons.”

My doctor penned a “grave mistake” to send unvaccinated PSWs and I am the affected person not receiving full disclosure. I live under Damocles’ sword.

Under Ontario’s Personal Health Information Protection Act, 2004, s. 40 (1), personal health information may be disclosed if there are “reasonable grounds that the disclosure is necessary for the purpose of eliminating or reducing a significant risk of serious bodily harm to a person or group of persons.”

Contracting COVID-19 would cause serious harm, death, to me.

Perhaps the answer is requiring both health agencies and clients to disclose vaccination status.

In fact, more than 23 provincial health agencies raised the bar mandating vaccines. Doesn’t Ford remember the financial savings keeping us at home? We pay rent, mortgages, all taxes, buy groceries. Makes sense and cents to me.

My PSWs perform the same tasks, and even more, than those in LTC. They operate a ceiling lift I nicknamed my “eagle’s nest,” moving me from bed to commode. They clean me, whisk me back to bed to wash, empty my catheter bag and help me dress. I confess quite delight in wardrobe choices! Another swing sets me in my electric wheelchair and we start exercises to the backdrop of ’70s folk or rock. I’m determined to maintain strength for writing and painting, two passions of daily joy and gratitude.

When Dennis is full-time caregiver he treats me with patience, gentleness and such love even though my system renders me a 63-year-old baby.

“I’m not ready ever for you to die,” he whispered recently.

But I am dying and Dennis and I still have choices. Death by COVID-19 takes away my choice.

Diane Sims was raised along Lake Superior. She has been an award-winning journalist with national print/broadcast media. She is also the author of five books. However, her position as editor of The Manitoulin Expositor remains closest to her heart. She lives in Stratford, Ont. You can reach her at dianesims@rogers.com.