‘This is his only communication’: Bedridden educator faces heated debate over iPad in Toronto hospital

Tommy Jutcovich (Provided by Adalia Schweitzer)

In the midst of a COVID-19 pandemic the family of Tommy Jutcovich, a patient at Toronto Grace Health Centre in Toronto, is trying to stay connected while having to physically be apart.

Jutcovich has a neurodegenerative disorder called multiple system atrophy (MSA), a condition where one or more systems in the body degenerate. Jutcovich cannot speak and and in terms of physical abilities, he is only able to blink one eye and smile, and relies on his family members or caregiver to communicate his needs.

Jutcovich is a grandfather to 17 grandchildren, with one more on the way, and a beloved teacher and principal with a career spanning more than 40 years. In 2013, R. H. King Academy in Scarborough, Ont, turned a lecture room into the Tommy Jutcovich Heritage Room to honour his great work and dedication to students.

In January 2020, 69-year-old Jutcovich was admitted to North York General Hospital. Either his wife or caregiver were there everyday, at all times, to help communicate his needs.

While he was at North York General Hospital, the COVID-19 virus rapidly began spreading, preventing Jutcovich’s family from being by his side. At this time, the family began using a tablet as a way to see him and help him communicate throughout the day.

Adalia Schweitzer, Jutcovich’s daughter, told Yahoo Canada he used it like a “call bell” and blinks to the screen when he is in pain or wants to watch something for entertainment. 

Schweitzer explained that once the tablet is turned on by hospital staff, her mother can set up a Facebook messenger chat to see her husband. She can ask if he needs anything, he blinks to spell out letters to form each word, and she asks if he wants to watch the news or listen to podcasts. Jutcovich’s wife can also set up video chats with the rest of the family. 

Schweitzer said her mother can control what he watches but she cannot see him while it plays on the tablet.

“When he’s having care, we don’t watch that...we’ve never watched that,” Schweitzer said. “We’ve never demanded full, 100 per cent viewing.”

Tommy Jutcovich (Provided by Adalia Schweitzer)

Hospital raises concerns about privacy, monitoring

As COVID-19 continued to cause increased concerns at the North York hospital, Jutcovich was transferred to the Salvation Army Toronto Grace Health Centre in downtown Toronto, in a private room, at the end of April. With visitation restrictions still in place amid the pandemic, Jutcovich’s family thought they would still be able to connect and assist him through the tablet, but the hospital would not allow the same access.

Toronto Grace only allowed Jutcovich’s tablet to be on for one hour a day and cited privacy concerns as a reason for the time limit on the use of the device. This caused his family to start an online petition to try to get his tablet restrictions lifted.

“Our policy allows for patients who can control their devices to use these devices in the hospital to communicate with family in a reasonable way, however, no recording is allowed during patient care,” Lt.-Col. John Murray, chair of the board of trustees at Toronto Grace Health Centre said in an e-mailed statement to Yahoo Canada.

“We cannot allow the use of a device which is controlled by unknown people outside the hospital who are able to use the recordings as they please. This device effectively acts as a monitor, with an ‘always-on’ microphone and recording device, that can be controlled remotely from outside the hospital.”

The statement from the hospital representative goes on to say the circumstances of this situation are “complex” and ordinarily, patients can use communications devices without any issues as family members and other guests are welcome to visit the hospital. 

“Toronto Grace is a public hospital and cannot allow personal and sensitive information and conversations to be recorded and transmitted,” the statement reads. 

“Also of concern to us is the ability of persons outside of the hospital and unknown to us to interfere with patient care by speaking up over the monitor and purporting to give instructions to staff without any accountability or authority.”

As the disagreement continued, a lawyer’s letter was sent to the family, indicating the hospital does not allow the use of “monitors” by patients or families or devices that “allow the continuous surveillance and recording of what is occurring within the hospital.”

‘This is his only communication,’ daughter says

On May 4, Communications Disabilities Access Canada (CDAC) sent a letter to the hospital stating that access to the tablet is “an essential communication accommodation that is required under the duty to accommodate human rights legislation” for Jutcovich.

The CDAC also provided a number of recommendations for Toronto Grace, specifically during the COVID-19 pandemic, when he is not able to have in-person visitation. This includes turning off the tablet or putting it away during services, which was already done in past, or creating an exemption to the current isolation protocol to allow his communication support persons to be physically present, with appropriate personal protective equipment (PPE).

“You’re isolated from your family and that should be reason enough to have a tablet on,” Schweitzer said. “Why are we isolating people even further when there’s no need for it right now.”

Schweitzer said it can take him longer than an hour to communicate what he needs. She added that more recently, following these discussions, he has been able to have the tablet on for an additional two or three hours.

“It is scattered throughout the day and even if we were to request a specific hour sometimes we’re told, no that doesn’t work,” Schweitzer said. “It’s really at their discretion.”

Toronto Grace believes they have provided “reasonable access” to the tablet for Jutcovich but the family disagrees.

“We’ve had...meetings with them, we plead, we try to explain to them why he needs it,” Schweitzer said. “This is his only communication, he can’t speak for himself, he can’t press the call bell.”

“[Last week], the final hour, my father spent the entire hour trying to spell out a word to my mother.”

Toronto Grace employees then brought up the possibility of transferring Jutcovich out of the hospital. His family has spoken to multiple hospitals and Schweitzer said there were no issues or concerns about the tablet functionality he was used to before arriving at Toronto Grace.

The family is now waiting for the transfer to occur.

Tommy Jutcovich (Provided by Adalia Schweitzer)

What other hospitals are permitting

As visitor policies have had to change during COVID-19, a number of hospitals in Ontario have introduced the use of tablets or other electronic devices as a way for patients to communicate with family members.

Sunnybrook Health Sciences Centre currently has 77 iPads available for patients to use to connect with family and friends, with 15 more being programmed for use.

“There are no limitations, patients just need to ask a member of their health care team,” Sunnybrook confirmed to Yahoo Canada.

Sinai Health, which operates Toronto’s Mount Sinai Hospital and Bridgepoint Active Healthcare, confirmed a growing number of patients have access to their own tablet or electronic device for communication purposes and for entertainment.

“We do ask that patients respect the privacy of other patients and staff members while using their devices,” a spokesperson from Sinai Health said in an emailed statement to Yahoo Canada. “If the image or voice of other patient or staff member will be seen during the interaction, their consent must be given in advance.”

Unity Health Toronto, which operates Providence Healthcare, St. Joseph’s and St. Michael’s hospitals in Toronto, has implemented a virtual family visits initiative. Inpatients without access to their own personal device can request the use of one, provided by the hospital, to have a 30 minute video call with family and friends each day. The guidelines for the hospital electronics specifies the virtual visits cannot be recorded.

The hospital group confirmed to Yahoo Canada that if patients have their own electronics, “they are free to use their own devices whenever they would like to as long as they are mindful of other patients, clients and residents around them.” 

“To help patients and families stay connected, we’ve made all TV, internet and phone access free on the tablets available at each bedside,” a statement to Yahoo Canada from Mackenzie Health in Richmond Hill, Ont., reads. “Free wifi is also available so patients can video chat with their loved ones from their own devices.”

These Zoom calls, organized through the hospital through their devices, are normally scheduled for 30 minutes but if there is availability or no call scheduled after a call, they can run longer.

“We ensure first that every patient has the opportunity to talk to his/her family,” Mackenzie Health said. “If patients ask for more than one call, they are often supported to do so.”

Patients can also use their own devices to video chat with their loved ones, using the free wifi at the hospital.