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machado: when will caregivers be recognized as a non-negotiable part of the health-care team?

anything good that happens during health care is overshadowed by a crazy-making system that, no matter what it claims or aspires to be, does not value caregivers.

by lisa machado

jan 23 2023

8 minute read

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we must use our voices to hold our health-care system accountable

cross your fingers that if you or those you love need serious health care, the hospital you land in has guidelines for patient and caregiver engagement embedded in everything it does. getty

“it is my right to know what’s happening with my mother.”

this from a friend whose 80-something mom landed in a toronto hospital after what would normally have been a no-big-deal urinary tract infection led doctors to a much bigger and more serious diagnosis of a rare life-threatening disease.

she had been there for days, first in a bed in the emergency room where she was receiving round-the-clock care, and then, after being admitted as a patient, in a semi-private room with an older man who never seemed to be awake.

at first, it was easy to forgive the fact that she had not been seen by a doctor days after leaving the er. after all, with an almost-certain diagnosis in the works, medications started and tests lined up, it was comforting that she was finally getting the care she needed and slowly climbing out of critical territory. plus, just one look around — patients in beds lining the hallway, medical staff rushing from room to room, an inability to find a wheelchair — it was clear that the circle of care was barely functioning. it was a system that could only be reactive, and only just. having a heart attack in the hallway? you get a bed. but if you’re ok to lie there for a bit longer, well, you’re going to lie there for awhile longer.

excluding him from his mother’s care was a violation of her rights

balancing caring for his kids and dog, and a full-time job, my friend visited every day. when he wasn’t there, he was texting and calling his mom, taking notes as she regaled him with stories of the nurses, doctors, and physiotherapists she had seen that day. she talked about the nice nurse who changed her iv bag, how she was wheeled away for tests only to lie on a bed in the hallway for hours, and the new medications that had been added to her daily routine. but no matter what time he visited — as next of kin and a designated support person — he was unable to connect with anyone who could explain the details of his mother’s care. this, despite the fact that the hospital claimed to consider patients and family members to be the “most important” member of the health-care team.

still, his mom seemed to be getting better, and that was certainly not something to sniff at.

in fact, after weeks of worrying symptoms and googling scary outcomes, because she was coherent and finally pain-free, it might have felt a little strange to complain. yet, it wasn’t acceptable to be so clearly shut out from his mother’s care, despite her request that he be included. and not just because it was making his job as a caregiver more difficult, although that’s worth mentioning. also not because it went against the so-called patient- and caregiver-focused mission of the hospital, although that’s important too. but most critically, not making an effort to include him was a violation of her rights as a patient.

every health-care facility in canada is bound by the patient’s bill of rights, which differs slightly depending on the province you live in. getty

every health-care facility in canada is bound by the patient’s bill of rights, which differs slightly depending on the province you live in, but generally includes things like the right to quality patient care that is free from discrimination, abuse or harm, to be treated with compassion and respect and to have a say in the planning of our own care. these are among nine of the rights that are basically shared by every province. each individual hospital can go beyond these rights, and many have, adding recognition of caregivers, family and friends, as part of the care team.

for example, cornwall hospital’s rights of the patient stipulates that a patient can have their caregiver included in the plan of care if they wish, and that that caregiver has the right to be actively involved in their loved one’s care with their permission. the hospital where my friend’s mother was staying also has a rights and responsibilities section in its family guide that states, among other things, that the staff will “welcome family and friends to be involved in care, as desired by the patient, communicate clearly, openly and honestly, and share information that will assist in making informed care and treatment decisions.” my friend said these missives were meaningless.

she didn’t know what she had consented to, but it had already happened with a needle

one night he called to check on his mom and she said she had just signed a consent form. she wasn’t sure what it was for, but that whatever she had approved had already happened with a needle. the next day, he left numerous messages with the nurse’s desk to have his mom’s doctor call him to clarify what the needle was for and what she had signed. when he visited and met the physiotherapist who was helping her exercise her legs, he asked her to ask the doctor to contact him so that he could get an idea of the care plan.

still, no response.

unfortunately, some time between her arrival to the emergency room — always wearing a mask — and tucking into her shared room, his mom contracted covid which precipitated a move onto the “covid floor.” her new room was dark and stiflingly warm, her bed lined up beside two others, both filled by older men with covid, always sleeping with no masks, mouths wide open, making snurgling noises and naked except for ill-fitting diapers. this is when i wondered if it was the best place for emotional and mental wellbeing and recovery for a woman in her eighties who was processing the fact that she had a life-threatening disease — but i guess these are desperate times. she was told she would be back in her regular room after waiting the required 10 day isolation period.

despite the risk, visiting his mom was essential given the lack of information he was being given not only about her care, but also her state of being. laying eyes on her was the only reassurance he had that she was in fact ok. but it wasn’t easy. in fact, it was a bit herculean — it meant pulling on a gown, plastic face shield and a mask, walking past the gasping men, having a quick chat, doing a doughnut handoff — chocolate-dipped — and then ducking back out. the anxiety of the possibility of bringing covid home with him weighed heavy.

it was a poky game of hide-and-seek hoping for a glimpse of the elusive doctor

after a couple more days with still no word on a treatment plan, he took to visiting during the times that rounds might happen, a poky game of hide-and-seek hoping for a glimpse of the elusive, ghost doctor. but still, nothing. around the same time, a woman responsible for discharging patients called to arrange his mother’s discharge. when he told her that they didn’t have a treatment plan yet, and that she hadn’t reached the 10-day post covid mark, the woman’s nonplussed response made it very clear: they needed her bed.

and when he called the hospital to get the direct contact info to reach her doctor, he was put on hold once he connected to the nurses’ station. as the line beeped rhythmically, he ate breakfast, took the garbage out and walked his dog. after 30 minutes, he got into his car and drove to the hospital, still on hold. just as he pushed the door open to the floor his mother was on, someone picked up the line and put him on hold again. at around the 47 minute mark, he was standing in front of the nurses’ station where three nurses were sitting talking — ignoring the orange light that was flashing on the phone.

when he called the hospital, he was put on hold once he connected to the nurses’ station. as the line beeped rhythmically, he ate breakfast, took the garbage out and walked his dog. getty

that all of his efforts to make sure his mom got the care that she needed weren’t completely futile — eventually he was able to have an actual conversation with his mom’s doctor — is one very little positive thing overshadowed by a crazy-making system that, no matter what it claims or aspires to be, does not value caregivers as part of the health-care team. clearly, they are not even worth a phone call.

one only has to think of those who don’t have someone in their corner to advocate for them, those who are left to traverse the murky waters of care while sick and tired, with no option other than to hope for the best. it makes me shiver.

of course, we’ve known for a long time that health care in canada is broken. it’s been a long, uphill snail-like climb towards getting patients and caregivers recognized as experts in care and acknowledging the very important role they play in improving outcomes. sadly, unlike bell or rogers, where just a simple request to speak to the customer retention department results in better services at a lower cost, health-care does little more than offer the ability to file complaints via tired patient relations people. if you have money to spend on advocating for yourself or your loved one, you can shell out $150 to $1500 to hire someone to help you navigate the system and ensure that your rights as a patient are respected.

need health care? gird your loins

if you live in ontario, you can reach out to the patient ombudsman — “as a neutral body of last resort for complaints about the health-care system in ontario” — but i can tell you from personal experience you’ll be waiting a long time for a response, if you get one at all.

so what are we to do? tell our stories, share experiences with each other and in the media. use our voices to hold our health-care system accountable not only for where its falling short, but also for making promises it can’t — and doesn’t seem to want to — keep. oh, and cross your fingers that if you or those you love need serious health care, the hospital you land in has guidelines for patient and caregiver engagement embedded in everything it does, and staff who believe it’s worthwhile. otherwise, gird your loins.

you’re in for a rough ride.

lisa machado is the executive producer of healthing.ca. follow her @iamlisamachado.

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lisa machado

lisa machado began her journalism career as a financial reporter with investor's digest and then rogers media. after a few years editing and writing for a financial magazine, she tried her hand at custom publishing and then left to launch a canadian women's magazine with a colleague. after being diagnosed with a rare blood cancer, lisa founded the canadian cml network and shifted her focus to healthcare advocacy and education.

machado: when will caregivers be recognized as a non-negotiable part of the health-care team?

anything good that happens during health care is overshadowed by a crazy-making system that, no matter what it claims or aspires to be, does not value caregivers.

excluding him from his mother’s care was a violation of her rights

caregiver coping strategies ‘affects level of distress,’ study says

watch: why aren't caregivers recognized as valuable 2022年世界杯预选赛比分表re?

she didn’t know what she had consented to, but it had already happened with a needle

it was a poky game of hide-and-seek hoping for a glimpse of the elusive doctor

need health care? gird your loins

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machado: when will caregivers be recognized as a non-negotiable part of the health-care team?

anything good that happens during health care is overshadowed by a crazy-making system that, no matter what it claims or aspires to be, does not value caregivers.

excluding him from his mother’s care was a violation of her rights

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she didn’t know what she had consented to, but it had already happened with a needle

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it was a poky game of hide-and-seek hoping for a glimpse of the elusive doctor

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need health care? gird your loins

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