Lisa Hicks is a malignant hematologist at St. Michael’s Hospital in Toronto
In late March, as the COVID pandemic settled around us, the Ontario Ministry of Health and Long Term Care introduced a no visitors policy for hospitals and other congregate care settings. The rationale for restricting visitors during the COVID-19 pandemic is straightforward. It is R-values, droplet spread, and unknown incubation times that have brought us to this place.
Initially we worried that visitors would bring the novel coronavirus to the hospital and the vulnerable people housed within our walls. Now as the pandemic evolves, and hospitals become a source, not just a potential recipient of the virus, we also worry about visitors spreading the virus from us to their community. Either way, I can follow the simple math. Less people in the hospitals means less opportunity for viral spread. If reducing contagion is the only concern, a strict no visitors policy maximizes benefit.
Of course, reducing viral spread is not the only medical outcome that matters. One weekend of ward call was more than enough to drive home this lesson for me. In the first room, an elderly man with delirium, greatly prolonged in the absence of familiar faces to anchor him to reality. In another, a woman who spoke no English trying to communicate through an elaborate pantomime. “Your IV? There’s a problem with your IV?” More gestures. A phone is found and a family member translates. “Oh, your IV is itchy? Yes, I see, it’s the tape. I think, some people are allergic.” A problem I can solve.
The next room is more difficult, “I’m sorry, I know your vision is getting worse – it’s the cancer, it’s spreading.” It’s picking off cranial nerves in a pattern that’s difficult to predict. One day it may take the nerve that enables clear speech. I imagine a future conversation, “I cannot understand my wife, why can’t I understand my wife?” How will I explain that our no visitors policy does not make exceptions for dysarthria?
The last room is the hardest, “I wish I could see my family too,” says the man in the bed by the window, nodding at the woman quietly visiting with his roommate.
“I’m sorry, the rules are very strict,” I say.
“I know,” he says softly, patting my hand, “I’m glad things aren’t that bad for me.”
Even in lock-down, word travels quickly. Friends and family members, once part of the fabric of our floor, now signify an anticipated death.
I do not care for children or labouring women. In the corner of the medical world I inhabit, the only patients allowed visitors are people whose death is considered imminent – except for those unlucky enough to be sick with COVID, when even dying doesn’t allow an exemption. One of the many problems with this rule is that doctors have never been terribly good at predicting death. Sometimes the transition to end of life is clear, but sometimes, especially in acute illness, even the near future can be difficult to pin down.
I am used to being asked to estimate the probability that a person will survive their illness – it’s an inexact exercise involving generalizing from imperfect data to the person in front of you – a person different in innumerable ways from those in the trials we quote. An individual – not aggregate data. What I’m not used to is my estimates being used to determine whether a person can see their family. What is the right number to allow visitation? A 10% risk of death this week? 25%? 50%? This is not a decision we can take back. If, despite our best efforts, we deny a family the opportunity to say goodbye to a loved one, to hold their hand, to stroke their hair, we can’t undo the damage. This is what haunts me this evening, when I should be sleeping.
I follow the policy, as I must, but neither my heart nor my mind believe that the harm we aim to prevent with current no visitors edicts outweighs the harm we are causing. COVID-19 will be with us for months or years to come; I believe it’s time to cautiously invite families and friends back to the bedside because we can’t deliver truly compassionate care without them.
I would like to acknowledge Martina Trinkaus and Devin Singh for their editorial input and encouragement
I agree! I have seen much more suffering from the lockdown than from the disease. This balance will tilt more and more in that direction the longer restrictions are in place.
Thanks for a well-written piece.
I’m in the palliative care unit at St. Michael’s as a medical resident. Thank you for your efforts in this blog. Under full precautions families need to be allowed back. Further I have helped deliver babies in the past 3 months, and cannot tell you how utterly inhumane blind application of rules are. Grandparents not meeting grandchildren, or grandchildren not being able to say goodbye to grandparents, and none of it because anyone is COVID positive or infectious. I say this with deep respect for COVID and daily fear of bringing it home to my wife and child.
Thank you Lisa. I appreciate all that you have to say here. I agree with your conclusion that it is time for hospitals to revisit their visitor policies in order to bring the compassion of the family back to the patient’s bedside.
I completely agree with this. We must respect the abiliity of an infectious disease to infect but we must not lose our humanity in the process – and the no visitor policy is only one example of that. True care is patient-centered and as well family-centered as for many the heart of life is one’s family. (I would not characterize Dr. Hicks as a ‘malignant hematologist’, as the title states – perhaps a better title would be ‘hematologists specializing in the care of patients with malignancy’ might be a little more apropo)
We are a senior couple, in or later 70’s. One of us became ill in mid-February the other in mid-March with what could have been flu or COVID-19. Our deliberations on whether to seek testing or not revolved around many factors. One prominent, and ultimately decisive one, was that should the test be positive and hospital care deemed necessary, we would be seperated for the duration of hospitalization, regardless of length or severity, or possible death. Also factored in was February medical consultation having yielded the diagnosis of nothing special was amiss; the medical office visit turned into a general assesment, and sending us home. All considered, we decided we would stay at home and venture caring for ourselves, in isolation, rather than chance the possibility of a hospital stay.
A long story to communicate a profound decision:
we would rather stay at home rather than risk being seperated until death.
These posts are very helpful. Our Dad, 94 in July, lives in an independent living suite in a retirement residence. To date, His retirement home has not had a covid outbreak. The visiting rules are extraordinarily strict and while there has been no outbreak there has been both a physical and emotional cost to this imposed isolation. We have not seen my Dad since early March. Skype, the only app we have access to does not work well for our small but tight family to see each other. We are permitted two calls per week. My Dad is legally blind and deaf complicating the isolation he feels. By nature I tend to be dramatic – but if the covid does not kill him the isolation will. I urge authorities to consider our fragile seniors and to try and balance isolation practice with the very human need for a closer connection with loved ones.
Well written, a heartfelt appeal.
Who makes these rules anyway ? The front line workers , such as this author, should have a say in policy. It should not be top down policy . I think this pandemic has taught us that we cannot make blanket policies and rules. There has to be room for individualization .
There is a fine line that we tread between individual safety and public safety, between physical health and mental wellbeing.
To paraphrase WB Yeats; we should tread softly for , as humans, we tread upon our dreams.
a fantastic blog. Indeed it is time for a policy review of this issue. Thanks for your poignant illustrations!