The family of a patient resident at a Kitchener, Ont., hospital say its internet policy has left the 30-year-old without streaming services, so they’re paying an “unfair burden” of costs to give him services he needs as a lifeline. Grand River Hospital says it works to keep patients connected with loved ones.
Tom Lister has been living at Grand River Hospital’s Freeport Campus in Kitchener, Ont., for almost a decade, and relies on the internet to connect to the outside world.
The 30-year-old was born with Duchenne muscular dystrophy — which is characterized by progressive muscle degeneration and weakness, and requires complex medical care. He relies on a ventilator to breathe, which impacts his speech, and has limited mobility.
Lister is only allowed to see his parents for an hour each per week due to pandemic visitation restrictions. When he’s not sleeping, he’s browsing YouTube videos, chatting with his friends or girlfriend on Facebook, or watching his favourite movies and shows on streaming services.
However, Tom’s dad, Malcolm Lister, says a change to the hospital’s internet policy has restricted streaming services and blocked some YouTube videos. The family say they have no other option but to pay out-of-pocket fees for a workaround that isn’t feasible for much longer.
“They’re putting an unfair burden on [our] family.”
The family said the internet has given Tom purpose.
“Without that, he would have contact with nobody. He would be stuck in bed, lying, staring at a wall. It is every single thing for him … It’s sort of like his whole existence is through that screen,” said his dad.
In a message to CBC News, Tom said he fears more restrictions are on the horizon. He communicates with family and loved ones through Facebook Messenger.
“I fear they may block Facebook … A lot of this is pretty basic things that people in my situation need.”
Patient’s mother says son needs full internet
The family used to pay $25 a month for full internet access via an external provider through the hospital. Two years ago, the hospital switched to a free, internal system, they said.
You would think that during the pandemic would be a time where agencies would open up more services to people that are shut in their houses, not cutting them back.– Edward Faruzel, KW AccessAbility
It was a move the family initially celebrated, but soon after, they were told of the streaming restrictions.
After considering several possible solutions, the family is now using a mobile internet hub that costs $600 a month — a price tag Tom’s mother Heather Lister said the family may not be able to afford much longer.
“This cost is permeating right through our family,” she said.
But without the special internet connection, Heather fears it would severely impact Tom’s mental health — and ultimately his physical health.
“Without that service, that full service, I’m not sure, I think he would give up on life and eventually pass away. And it would be quite easy for him to refuse to take food or water and just give up.”
Some website restrictions needed: hospital
The family wants the hospital to step in. But Malcolm said that when asked about the policy change, the hospital told them “the internet wasn’t sufficiently strong enough to support streaming for everyone. They now have said as well that they think it interferes with medical equipment.
“I don’t understand that,” he added.
In a statement to CBC News, a hospital official said some restrictions are necessary.
Grand River Hospital is dedicated to creating positive patient experiences, and part of this includes ensuring those in our care can stay connected with loved ones by using our wireless internet, free of charge.– Kate Robertson-Cain, Grand River Hospital
“Like many organizations, we have a fixed internet bandwidth across our hospital,” said Kate Robertson-Cain, vice-president of clinical services and chief nursing executive, in an emailed statement. “Streaming services slow down our network by using lot of data, which requires us to restrict some sites like Netflix to ensure the systems we use to support patient care are always available. Other high-bandwidth tools, like video calling services, remain unrestricted to support patients connecting with their families and friends outside of the hospital.”
The hospital confirmed that in 2019, it launched a new cloud-based information computer system connected to the internet. However, officials said streaming services have been restricted “for a long time at the hospital,” and the new system is more reliant on internet connectivity than the previous one.
“Grand River Hospital is dedicated to creating positive patient experiences, and part of this includes ensuring those in our care can stay connected with loved ones by using our wireless internet, free of charge. We balance this with our priority of cybersecurity, ensuring patient information, and our clinical and corporate hospital systems are safe, secure, and available for patient care at all times,” Robertson-Cain said.
Hospital internet policies differ
CBC reached out to other Ontario hospitals and the province, and found internet policies and access for patients can differ depending on the facility.
There are no provincial policies that govern the type of internet services that must be offered in hospitals, according to a statement from the Ontario Ministry of Health.
“Public hospitals are independent corporations that are governed by their boards of directors,” said the statement.
“Hospitals are encouraged to work with patients and their families to ensure patients receive the appropriate care and support, depending on their needs.”
At KItchener’s St. Mary’s General Hospital, patients are allowed to stream content, and any limitations are “centred on inappropriate content and privacy,” it said in a statement.
Patients who stay overnight or for several nights at Cambridge Memorial Hospital can log into a service that supports personal streaming applications, it confirmed.
The ministry suggests that families contact the patient ombudsman if an issue cannot be resolved through the hospital.
Connection crucial during pandemic
Tom Lister said in the statement to CBC News that the pandemic has heightened the internet’s importance.
“As of 2020, when COVID-19 hit, we realized just how important the internet really is. The hospital Wi-Fi service provider failed to see that … Movies, shows, gaming and music are my biggest passions. I can’t do any of those on their Wi-Fi.”
Local advocate Edward Faruzel was surprised to hear of the hospital’s policy, especially during the pandemic. The executive director at KW AccessAbility said organizations need to step up.
“Well you would think that during the pandemic would be a time where agencies would open up more services to people that are shut in their houses, not cutting them back, so I don’t know why they would do that.
“One of the big things now is providing online programs. So, you know, instead of taking services away they should maybe look at ways to help people connect to their community,” Faruzel added.
Grand River Hospital officials say they’re working to find a solution, but the family is still waiting.
The Lister family hopes they can come to some sort of compromise, not only for Tom, but for other patients at the facility that houses 280 beds.