by Josh Hawley
I sat at my dining table on the first day of Fall 2020, on the clock for my job as a teaching assistant, as the indirect midday sunlight cast an uneven filter over my Zoom presence. I strained to keep my face directed at my laptop, but my attention was on my phone and the series of texts from my mother: “Bryan’s not feeling well … have to call an ambulance … it’s urgent.”
My father Bryan Hawley died on October 29, after a five-and-a-half week ordeal in hospital, at the age of 75. He did not die of a COVID-19 infection, but my family believes the forced separation of my father from his caregivers — his family — might very well have contributed to his death.
My father’s long-time health conditions always kept my family on edge. We knew at a moment’s notice any number of crises could befall him and it was up to us to make sure he was promptly seen by doctors. But what we didn’t know was how the blanket social isolation measures taken by healthcare institutions would adversely affect the care he received — from paramedics to the emergency department to the hospital ward, measures which ultimately exist to offset the provincial government’s dangerous management of COVID-19. The unease from the moment my mom sent those texts only grew over the course of that day and the following weeks, as my family tried to find our way through the unfamiliar territory of family caregiving during a pandemic.
My father was brought by ambulance to the Ottawa Hospital General Campus that day, September 22, after complaining of pain to my mother, who was his full-time caregiver, and requesting she call an ambulance. When the paramedics arrived at their seventh-floor apartment, they ordered my mother to stand at a distance in the kitchen while they took my father away. The paramedics would not let my mother speak to them to share crucial information about my father’s medical history, nor was she allowed to go with him in the ambulance. Then when my mother called the emergency department for an update a few hours after the paramedics picked him up, she was told he was still on a stretcher in a hallway. Reflecting with my mother in the weeks following his death, we believe separating my father from his caregiver at this crucial moment ultimately set the stage for his passing.
My father had major communication barriers. This was the first time in as long as we can remember that he went to the emergency room alone, unaccompanied by family. A stroke three years ago left him with aphasia, which made it difficult for him to voice his thoughts — he had a hard time finding the right words and stringing sentences together. He was also legally blind — he couldn’t see faces easily and had a hard time keeping track of which doctors and nurses were caring for him and what information they were relaying. His disabilities, in addition to the pain and nausea he was experiencing, meant he was not capable of conveying important details about his medical history and the urgency of this medical crisis to emergency department staff. But it wasn’t until weeks later that we found what really happened that afternoon.
After his passing, my mother requested the hospital’s notes from that day. What we read was heartbreaking and angering. It confirmed our suspicions that the hospital did not take into consideration any of his communicative barriers or consider the role of his caregivers.
According to the notes, my father gave wrong information, while there were other questions he couldn’t answer at all. Nowhere in the notes was there any mention of the complex conditions my father dealt with from his stroke, including aphasia, confusion, and apathy, let alone his history of life-threatening complications from decades of major bowel surgery. Instead of bringing my father’s caregivers into the conversation to fill in the gaps, the emergency department doctor took my father at his word. There should have been a clear note on his file from previous hospitalizations that said he could not answer questions reliably and needed a caregiver. Instead, the “Past Medical History” box on the first page listed a few generalized medical conditions. What nuances was the emergency department doctor supposed to draw from these truncated terms without caregivers present? Under “Other Relevant Past Medical History,” where perhaps there could have been elaborations, there was a big blank space. If either my mother or I was there by his side, as caregivers should be, we could have communicated that he had a history of bowel obstructions due to hernias, which are life threatening. Every hour counts.
Healthcare institutions reacted with impromptu, one-size-fits-all blanket protocols — because the pandemic spread beyond containment, as governments chose the economy over lives, especially elderly lives.
Yet, that day, after my mother called the ambulance at 12:30 PM and he was triaged at 1:40 PM, it wasn’t until 4:33 PM that the emergency department doctor conducted the “Physician Initial Assessment.” At 7:06 PM, the CT scan revealed a bowel obstruction and at 9:00 PM the general surgery department determined he needed immediate surgery. At no point during that entire day — from the moment the paramedics arrived to the call from the surgeon who told my mother, “He might not make it” — did the hospital ever ask my father or us if he required a caregiver.
My father was no stranger to the hospital — cumulatively he spent years of his life at the General. Over the next five weeks, he ended up having a second emergency surgery and countless blood transfusions. But in the end, the bowel was damaged beyond repair. His final days were in palliative care.
My mother, my two siblings, and I were eventually given unrestricted visiting privileges at the hospital. The nurses in his ward were excellent and they tried to advocate for us once they recognized how much we helped care for my father. Sadly, the Ottawa Hospital allowed us to be with him full-time not based on our roles as caregivers but based on compassionate grounds, when his condition deteriorated beyond medical intervention. The hospital was able to recognize our role in accompanying my father’s death, but not the role we might have played in preventing it.
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There is a lack of ceremony around mourning in our secular, capitalist Western society. My father’s celebration of life gathering has also been postponed until the spread of the virus is drastically curtailed. So I turned to journalism as a ritual to help with the mourning process. I decided to write an article for The Leveller, to investigate how this fit into the broader social problems exposed by the pandemic.
I contacted the Ottawa Hospital to ask some questions about the role of caregivers for patients who require them. The hospital responded by referring to their “Essential Care Partner program.” They did not say when the program started, but Sarah Hartwick, a “Communications Officer” for the hospital, stated instead that it “evolved from the visitor policy developed in the spring of 2020 as a way to support our patients while also protecting patients and staff members during the COVID-19 pandemic.”
My family was not made aware of any such protocol or program at the General. For the first few weeks, we were limited to the blanket COVID-19 visitation policy: one visitor for one hour per day between 1:00 PM and 5:00 PM. When we weren’t there, my father was lying in silence with no stimulation, no emotional support, and nobody to advocate for him. He couldn’t use a phone to call us or the tablet he got through the CNIB Foundation, the national support organization for the blind, to listen to audiobooks. He didn’t even have the ability to use his trusty pocket radio, which was his long-time go-to hospital gadget.
It was only in November, after my father died, that the Ottawa Hospital updated its “Visiting the Hospital” page to include their caregiver program. It now reads: “In full restrictions, visitors will not be permitted at The Ottawa Hospital, with the exception of Essential Care Partners or paid support workers.”
I also questioned the Ottawa Hospital about how caregivers are notified of this program and how quickly they are brought onto a patient’s care team. Hartwick responded: “When patients are admitted to the hospital, their care team will work with them to determine if having an Essential Care Partner needs to be part of their care plan. The care team then works with the patient and the Essential Care Partner to ensure that the access, training and support they need is put in place.
“If a patient is not able to have this conversation, the care team will work instead with the patient’s substitute decision maker, as part of their regular communication with a patient’s loved ones or caregivers while they are in hospital.”
None of this happened this past fall with my father. We were months into the pandemic, but the hospital still had not recognized that some patients have essential caregivers. Even now, caregivers can only be recognized as essential after admittance. If a caregiver is essential, wouldn’t they be essential on admittance too?
In comparison, the visiting guidelines of the Children’s Hospital of Eastern Ontario (CHEO) have emphasized throughout the pandemic the importance of caregivers. CHEO recognizes the necessity of having caregivers present with patients at all times, especially at the moment of admittance to hospital. Their COVID-19 protocol states: “When parents and caregivers come with their children and youth to CHEO, they’re not visiting. They are actively working as part of their child’s care team, providing us with vital health information only they would know and giving emotional support in a way only a parent or caregiver can. … ONE parent/caregiver will be allowed to accompany children and youth while at CHEO, whether in clinic, the Surgical Day Unit or the emergency department.”
It’s sensible to expect only one adult can accompany a child under pandemic conditions, but it was never an option for CHEO to separate patients from their caregivers. Of course not! We would see that as cruel and damaging. But at the General Hospital, it was standard practice to not even question whether a patient required a caregiver.
My intent with this article is not to condemn the Ottawa Hospital for putting in place a restriction on visitors, which is a reasonable measure to deal with COVID-19. However, my impression after having gone through the loss of a disabled and elderly parent under these conditions, is that healthcare institutions reacted with impromptu, one-size-fits-all blanket protocols — because the pandemic spread beyond containment, as governments chose the economy over lives, especially elderly lives. (Ironically, this approach has also damaged the economy far more in the long run — countries who decisively shut down their economies to prevent any infections and deaths, like New Zealand and Taiwan, have been able to re-open and basically resume normal life, economically and otherwise.)
With Ottawa teetering on the brink of the province’s red zone restrictions and a third wave expected in April, I do not want to see patients continue to suffer from being isolated from their loved ones and caregivers. We should know better than to repeat our mistakes.
My dad fought hard for poor and disabled people for decades because he was both. Nobody is permanently able-bodied, he always said. Instead, non-disabled people are TABs — temporarily able-bodies. We never know when sickness or injury will hit, and strong relationships, built through years of hard work, are essential in providing a high level of care for one another. It’s these relationships we have with each other that will challenge the ever-worsening conditions imposed by every level of government.