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'the last time i saw him, he was on a ventilator'
van le talks about advocating for family, and what it's like to lose someone during a pandemic that locks out visitors.
jul 2 2021
8 minute read
in the weeks leading up to tien le's death, his wife and children were not allowed to visit. supplied
van le’s father, tien le, was hospitalized one year ago to investigate a suspicion of cancer. it was just the beginning of the covid-19 pandemic, and with so many unknowns about the virus that was spreading quickly across the globe, hospitals had put policies in place to protect staff, patients and caregivers, which included not allowing visitors. in some clinics, this rule was lifted if the patient was critically ill or dying. in other facilities, the state of the patient didn’t matter. these people died alone, their families and loved ones bereft and devastated on the outside. while van and her mother were allowed sporadic visits, when doctors knew tien was not likely to survive 24 hours, she says her family wasn’t told or given the opportunity to see him, to say goodbye, to begin to prepare. to complicate matters, tien didn’t speak english, and van had no way of knowing if her father received help with translation in the days leading to his death. the last memory she has of her dad, 56, is of him on a ventilator, barely responsive, minutes before he took his last breath.
this interview has been edited for length and clarity.
it was [about] one year ago that my father went to brampton civic hospital. i can’t forget because it’s around my nephew’s birthday, on june 1. we got a call from the hospital saying that they had an initial biopsy, that there was fluid in his spine and their belief was that it was cancer. he was diagnosed, and they recommended that he go in for “fairly routine spinal surgery” to improve the pressure that he was feeling in his spine and alleviate the pain. the doctors said this type of surgery typically has a 90 per cent success rate, cancer or no cancer. but he had complications and needed to be transferred to trillium health in mississauga, because they didn’t understand why he wasn’t improving.
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it turned out that he actually had blood clots that had started somewhere in his lower gi system and he needed life-saving surgery, which only has a 50/50 chance of survival. but there was no other option. a week or two after the surgery there was a bleed and, overall, he had a number of surgeries at trillium and a lot of tests. it was all a lot.
my father spent about seven weeks in hospital, without me and my family being able to regularly see him. i was in contact by advocating for him, emailing and calling trillium’s patient relations every single day. my mom and i were the only ones really able to see him, because i facetimed every single day, and she still only saw him four or five times during that entire span, and one was because he had gone into cardiac arrest. during that time, my father’s overall health deteriorated quite a bit, and no one was talking to us about whether or not it was end of life, or if he was recovering, which made it so much more painful.
even calling wasn’t a simple process. a nurse would have to be available, and although i know the icu was dealing with a lot, each time we called, it felt like an inconvenience. i know that for them, my father was one of many. but it’s hard when the staff is rotating regularly and not always looped in, we were receiving so many mixed messages. one doctor would say, “mr. le is a very sick man,” while another would just say, “the patient is stable.”
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this was happening despite the fact that the hospital’s policy, at the time, was if the patient was critically ill or at end of life, they could receive regular visitation. i am now in a formal complaint process with the patient ombudsman’s office, which i started after my father died. and that’s not only due to their inconsistent visitation policy, but my parents can’t speak english, and they didn’t provide him consistent translation, so i still don’t know if half of the procedures were done with consent. what if my dad or my mom might not have wanted them done? what if he just wanted to go home?
when we finally fit into the hospital’s end-of-life policy, my mom and i were able to be with my father, but not my younger brothers. i understood, because there was a capacity limit. but after he died, they were waiting inside the hospital — they just wanted to say goodbye, but were told they would have to wait until the funeral. how do you process that?
when i shared my story online, i discovered so many others had experiences like ours, but were too scared to file complaints. even after my father was effectively in a coma and they were able to resuscitate him and he was put on a ventilator, even when the doctors knew my father was going to die and that there was almost no chance that he was going to make it past 24 hours, we weren’t made aware. he really couldn’t communicate and with no translation, i would ask the doctors, “how do you know he’s okay?” and they were pretty flip about it and said, “well, you know, he can blink.”
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and that’s what really infuriated me. i understand that some think families need hope, blind or not, but i just wanted to know what his state was so that we could start fighting for what we needed. if he was at end of life for several weeks instead of 24 hours, we should have been able to see him every day. then my mother could have actually planned. he didn’t have a will, for example, which is something we found out after. and while my mom has other means and support, we would have loved if all of this could have been discussed. but no one gave a concrete diagnosis of what was happening and, even to this day, after his death, there’s been no apology or definitive explanation of what happened to him.
the last time i saw him, he was on a ventilator. his eyes weren’t open and he wasn’t really reacting to anything. it was very hard. my mom and i stayed overnight, and we eventually heard the machine go silent, and he passed. that was it. when the funeral came, because my parents are buddhist, we followed specific rituals, but guests were limited. that meant, because all of my father’s family don’t live in canada, they could only watch a video of the ceremony.
it was a hard year, but i know the toll is much harder on my brothers and my mom. there is a part of me that at least feels some level of reassurance because i can do something, i filed a complaint and i was able to advocate. but my brothers didn’t have that capacity and didn’t get closure because they didn’t get to see their father. my youngest brother, toby, is 23, and i think he took his death the hardest because my father won’t be at his wedding, he’s never going to meet his kids. i also found out, right after my dad passed, that i was expecting and now i have a nine-week-old baby he won’t meet. and then there’s my mom, who is a young widow — she’s by herself. to make matters tougher, because of covid, we’re all in this lockdown limbo, and isolation doesn’t help a family grieve.
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early on, even before my dad died, i read a lot about that mourning process. i knew grieving was going to be the worst thing that i would ever feel, but i thought that if i could learn as much about it ahead of time, maybe i could at least be equipped for figuring out how to stay connected with others while going through it. and now my brothers and i are so much more connected than we’ve ever been. still, i haven’t gotten formal counselling, but i’m transparent and candid about my what my grief feels and looks like, and setting boundaries. most days, i’m fine, but i do miss him every single day, which, of course, is normal. but then on other days, i’m really angry and sad.
for those experiencing a similar kind of grief, i can only say, don’t feel shame and don’t keep it a secret. yes, most people who haven’t experienced it may be uncomfortable around it because it brings up emotions they haven’t experienced or they’re not ready to experience. but there are others who have felt it, who understand, and who will be there for you. just don’t isolate yourself.
and don’t be afraid to advocate for your family and do what you feel is best for them. i know so many are going through what we did, and my family and i will support you.
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healthing contacted trillium health partners (thp) for comment on this story. the response has been edited for length:
for privacy reasons, trillium health partners (thp) cannot provide comment on, or confirm the identity of, patients or their specific care as per the personal health information protection act (phipa).
visitors are essential in supporting patients through their illness. trillium recognizes the importance of these relationships and actively works with families to include them in care planning and delivery.
to provide safe, high-quality care and protect our patients, people and community, thp has implemented a temporary visitor policy since march 2020 to prevent the spread of covid-19. this policy is guided by public health guidance and our infection prevention and control team, and has been adjusted throughout the pandemic in response to the evolving situation.
at thp, we have an appeals process for our temporary visitor policy, which starts by a family or clinical team reaching out to our patient relations department. patient relations will review the appeal and interview the family, patient and care team. this information is presented to the appeals committee, which is made up of senior members from our ethics, patient safety and patient relations teams. the committee will make a decision on whether or not the request meets the exemption criteria, which includes a review of patient safety, staff safety and extraordinary circumstances. a decision is made based on the current status of the patient and is communicated to the individual(s) who requested the appeal.
in response to claims that tien le may not have received proper translation support: thp supports our patients through our language services department, which offered limited in person as well as virtual and telephone translation services over the course of the covid-19 pandemic. we also have a diverse staff that speaks many languages, and when possible, try to pair patients with staff. thp is always striving to improve our services to serve our community best.
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if you or someone you know is struggling with loss and grief, there are a number of resources in canada that can offer support, guidance and community, including sinai health’s circle of care (416) 635-2860, ext.271), the bc bereavement helpline (1-877-779-2223) and the centre for addiction and mental health (camh).
this story is part of healthing.ca’s series on grief. read why are people dying alone in our hospitals which explores hospital policies around death during the pandemic, and a psychotherapist’s guide to surviving grief, an interview with expert andrea harnick on her advice for surviving loss.
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