My Ama* (paternal grandmother) has a great memory, a sharp mind, and observes people like a hawk. She can recall childhood memories with vivid detail and remembers the street name of her first home in Canada from forty years ago. She's illiterate with the equivalent of a grade 2 education, but she used mental math to calculate the price of fabric by the square meter when she co-ran a fabric shop with my grandfather in Vietnam. In Canada, this ability translated to quickly calculating family members’ ages by knowing their Chinese zodiac sign and adding or subtracting in 12s. Whether this is a universally Chinese/Vietnamese experience or a specific family quirk, I don’t know. But with 11 living children, 20+ grandchildren, and several great grandchildren, that’s a lot of names to know and math to do. She also quietly observes family dynamics and certainly has her opinions, which normally would remain unknown to us all. However, these have come to light because at the moment of writing this, Ama is suffering from (presumably) delirium.
In late May, Ama was brought to the ED for her confusion and sudden changes in behaviour. When it was established that she had to be admitted, we were nervous with how she would handle being alone. For all of her life, she’s been with family and even relied on her children to complete her IADLs. Furthermore, she is not fluent in English and is typically a non-complainer with an incredibly high pain threshold; she will only alert family if her condition is severe. However, we all understood the gravity of the COVID-19 pandemic and the need to reduce community transmission and prevent a hospital outbreak. I trusted the healthcare system to treat Ama the best that they could under these challenging circumstances.
A few days following her admission, she was discharged for “refusing treatment”. At first this seemed consistent with her spunkiness, since she had admitted to us that she wasn’t eating due to the low-quality hospital food that we all know. We were ecstatic to have her back home because we were consumed with worry while she was an inpatient. This relief was short-lived because immediately upon driving her home, it was very clear that Ama was, at best, significantly delirious. Loss of orientation, fighting to even enter the home, visual hallucinations, delusions of grandeur, sudden aggressive behaviour, and disinhibition not typical of her personality - something was gravely wrong.
In normal times, when we are not dealing with the consequences of a worldwide pandemic involving a disease we’ve only known about for approximately half a year, taking her back to the hospital to identify an underlying condition would make sense. But my family has lost faith in any healthcare team’s ability to treat Ama when simultaneously facing the external challenge of COVID-19 and the subsequent policies in place. I do believe that our inability to regularly communicate with her to coax her to eat, drink, sleep, and accept her treatment (things all required to help manage delirium) as well as the inability to witness her personality changes as an inpatient and relay concerns with a healthcare team exacerbated her condition. With no guarantees that any of these lapses in care could be addressed upon a second admission, we’re all reluctant to ever let Ama return to a hospital until the “visitor” policies relax or she declines beyond our own capabilities. The stakes are simply too high.
These experiences have highlighted that not all “visitors” are one and the same. As others have lamented, my family’s situation is not unique, particularly for those in long-term care homes (1). Other elderly patients are also denied meaningful access to their families, and the situation is especially fraught for those who are unable to communicate in English and/or those who have dementia. For hospitals to implement policies that limit family interactions to brief video or phone calls is a disservice to patients and to the family members who are actively invested in their loved one’s care. We know how COVID-19 has wreaked havoc in long-term care homes, very likely due to poor operating conditions as well as the frailty of residents (2). One can’t help but wonder, however, how many COVID-19 deaths were related to the isolation patients must have felt, especially those who are not able to operate technology or find meaning in virtual meetings. One can’t help but wonder how many elderly patients who test negative for SARS-CoV-2 are suffering in the background because they also can’t see their loved ones and in turn, their loved ones are not able to advocate as much as they normally would.
I have spoken openly (or certainly more openly than my baseline) about our experiences on social media. Friends and strangers have certainly tried to amplify my message or have reached out to help my family. For their efforts, I am beyond touched and am forever grateful for their concern, insight, and assistance. That said, as someone who previously considered herself reasonably well-connected to individuals with medical knowledge and resources compared to the average person, I had trusted that I would be overwhelmed with outreach and information.
That was not the case.
The rational part of my mind understands that not everyone can see every social media post. People have their own lives and concerns and are simply just busy. But all the rational thinking in the world can’t prevent me from feeling sad and frustrated for my family when I see active engagement among colleagues on lighthearted or celebratory posts about being a medical student. I know that I am an extreme introvert, so I have to reap what I sow. But I’ve been more vulnerable than I have ever been, begging for any help, and I can’t seem to break through the mainstream medicine social network.
And I will concede that I am not without fault, and people who live in glass houses shouldn’t throw stones. I’ve likely missed signs that someone was struggling and didn’t reach out, and if I have failed anyone reading this, I apologize and would be open to having a discussion on how to improve. We need to genuinely be there for one another. Studying and practicing medicine are often not without tragedy, and many of us have lost a colleague under heartbreaking circumstances only to go, “If only I knew”. Yet if public pleas for help are going to be met with silence, simply for not being close friends with the “right people”, then I can’t help but be skeptical if we’re ever truly going to change our culture. Are we trying to help those who have the most extensive networks or are we trying to help everyone?
I have my family who I talk to every day. I have my Ama who, even in her current condition, still tells my parents to tell me that she loves me. I have a close network of friends. I have work that I enjoy.
I will be fine.
But these supports and guarantees are not necessarily present for everyone.
In the end, this piece has two messages, both revolving around amplifying the voices of the voiceless. One - as future healthcare workers, we need to watch out for the most vulnerable of patients and be flexible in using available resources, even if we’re facing trying times. Just because a patient who does not communicate well appears to be refusing treatment or is lying quietly in their room, providing that extra attention and involving family caregivers can make a world of a difference to improving patient care. Two - as colleagues, we need to watch out for one another, perhaps now more than ever considering how COVID-19 has transformed the world. Much like with our patients, if we’re going to miss the cries for help from those who are not frequently vocal, our peers are going to slip through the cracks. And then when our community hits rock bottom, we won’t really have the right to say “If only I knew”.
My Ama, even in her state, has a great memory.
As do I.
*Our family’s use of language (Vietnamese, Cantonese, and Suzhou dialect) is complex. Someone more Chinese than I am may disagree with my spelling, but old habits die hard. In another life, a younger me would have been better at using Vietnamese titles and would have used Bà Nội.
1. It’s time to let families visit long-term care homes - The Globe and Mail [Internet]. [cited 2020 Jun 6]. Available from: https://www.theglobeandmail.com/canada/article-its-time-to-let-families-visit-long-term-care-homes/?utm_medium=Referrer:+Social+Network+/+Media&utm_campaign=Shared+Web+Article+Links
2. Long-term care connected to 79 percent of COVID-19 deaths in Canada - The Globe and Mail [Internet]. [cited 2020 Jun 6]. Available from: https://www.theglobeandmail.com/politics/article-long-term-care-connected-to-79-per-cent-of-covid-19-deaths-in-canada/
In late May, Ama was brought to the ED for her confusion and sudden changes in behaviour. When it was established that she had to be admitted, we were nervous with how she would handle being alone. For all of her life, she’s been with family and even relied on her children to complete her IADLs. Furthermore, she is not fluent in English and is typically a non-complainer with an incredibly high pain threshold; she will only alert family if her condition is severe. However, we all understood the gravity of the COVID-19 pandemic and the need to reduce community transmission and prevent a hospital outbreak. I trusted the healthcare system to treat Ama the best that they could under these challenging circumstances.
A few days following her admission, she was discharged for “refusing treatment”. At first this seemed consistent with her spunkiness, since she had admitted to us that she wasn’t eating due to the low-quality hospital food that we all know. We were ecstatic to have her back home because we were consumed with worry while she was an inpatient. This relief was short-lived because immediately upon driving her home, it was very clear that Ama was, at best, significantly delirious. Loss of orientation, fighting to even enter the home, visual hallucinations, delusions of grandeur, sudden aggressive behaviour, and disinhibition not typical of her personality - something was gravely wrong.
In normal times, when we are not dealing with the consequences of a worldwide pandemic involving a disease we’ve only known about for approximately half a year, taking her back to the hospital to identify an underlying condition would make sense. But my family has lost faith in any healthcare team’s ability to treat Ama when simultaneously facing the external challenge of COVID-19 and the subsequent policies in place. I do believe that our inability to regularly communicate with her to coax her to eat, drink, sleep, and accept her treatment (things all required to help manage delirium) as well as the inability to witness her personality changes as an inpatient and relay concerns with a healthcare team exacerbated her condition. With no guarantees that any of these lapses in care could be addressed upon a second admission, we’re all reluctant to ever let Ama return to a hospital until the “visitor” policies relax or she declines beyond our own capabilities. The stakes are simply too high.
These experiences have highlighted that not all “visitors” are one and the same. As others have lamented, my family’s situation is not unique, particularly for those in long-term care homes (1). Other elderly patients are also denied meaningful access to their families, and the situation is especially fraught for those who are unable to communicate in English and/or those who have dementia. For hospitals to implement policies that limit family interactions to brief video or phone calls is a disservice to patients and to the family members who are actively invested in their loved one’s care. We know how COVID-19 has wreaked havoc in long-term care homes, very likely due to poor operating conditions as well as the frailty of residents (2). One can’t help but wonder, however, how many COVID-19 deaths were related to the isolation patients must have felt, especially those who are not able to operate technology or find meaning in virtual meetings. One can’t help but wonder how many elderly patients who test negative for SARS-CoV-2 are suffering in the background because they also can’t see their loved ones and in turn, their loved ones are not able to advocate as much as they normally would.
I have spoken openly (or certainly more openly than my baseline) about our experiences on social media. Friends and strangers have certainly tried to amplify my message or have reached out to help my family. For their efforts, I am beyond touched and am forever grateful for their concern, insight, and assistance. That said, as someone who previously considered herself reasonably well-connected to individuals with medical knowledge and resources compared to the average person, I had trusted that I would be overwhelmed with outreach and information.
That was not the case.
The rational part of my mind understands that not everyone can see every social media post. People have their own lives and concerns and are simply just busy. But all the rational thinking in the world can’t prevent me from feeling sad and frustrated for my family when I see active engagement among colleagues on lighthearted or celebratory posts about being a medical student. I know that I am an extreme introvert, so I have to reap what I sow. But I’ve been more vulnerable than I have ever been, begging for any help, and I can’t seem to break through the mainstream medicine social network.
And I will concede that I am not without fault, and people who live in glass houses shouldn’t throw stones. I’ve likely missed signs that someone was struggling and didn’t reach out, and if I have failed anyone reading this, I apologize and would be open to having a discussion on how to improve. We need to genuinely be there for one another. Studying and practicing medicine are often not without tragedy, and many of us have lost a colleague under heartbreaking circumstances only to go, “If only I knew”. Yet if public pleas for help are going to be met with silence, simply for not being close friends with the “right people”, then I can’t help but be skeptical if we’re ever truly going to change our culture. Are we trying to help those who have the most extensive networks or are we trying to help everyone?
I have my family who I talk to every day. I have my Ama who, even in her current condition, still tells my parents to tell me that she loves me. I have a close network of friends. I have work that I enjoy.
I will be fine.
But these supports and guarantees are not necessarily present for everyone.
In the end, this piece has two messages, both revolving around amplifying the voices of the voiceless. One - as future healthcare workers, we need to watch out for the most vulnerable of patients and be flexible in using available resources, even if we’re facing trying times. Just because a patient who does not communicate well appears to be refusing treatment or is lying quietly in their room, providing that extra attention and involving family caregivers can make a world of a difference to improving patient care. Two - as colleagues, we need to watch out for one another, perhaps now more than ever considering how COVID-19 has transformed the world. Much like with our patients, if we’re going to miss the cries for help from those who are not frequently vocal, our peers are going to slip through the cracks. And then when our community hits rock bottom, we won’t really have the right to say “If only I knew”.
My Ama, even in her state, has a great memory.
As do I.
*Our family’s use of language (Vietnamese, Cantonese, and Suzhou dialect) is complex. Someone more Chinese than I am may disagree with my spelling, but old habits die hard. In another life, a younger me would have been better at using Vietnamese titles and would have used Bà Nội.
1. It’s time to let families visit long-term care homes - The Globe and Mail [Internet]. [cited 2020 Jun 6]. Available from: https://www.theglobeandmail.com/canada/article-its-time-to-let-families-visit-long-term-care-homes/?utm_medium=Referrer:+Social+Network+/+Media&utm_campaign=Shared+Web+Article+Links
2. Long-term care connected to 79 percent of COVID-19 deaths in Canada - The Globe and Mail [Internet]. [cited 2020 Jun 6]. Available from: https://www.theglobeandmail.com/politics/article-long-term-care-connected-to-79-per-cent-of-covid-19-deaths-in-canada/
