Death and Isolation During a Pandemic
We can never lose sight of what it means to be human
My grandfather, one of the most noble, creative, and loving men I have met, recently passed away. His final days and weeks were filled with numerous visits from family and longtime friends. He had a final chance to see, touch, feel, and hug the special people who share countless of his everlasting memories. His wife and children never left his side, providing him love, support, and blessings though his final moments.
I cannot speak for my grandfather, but I am certain he felt the love that radiated around him and was thankful to spend his last breaths with the people he cherished the most. Ultimately, he passed away in the comfort of his own home. My grandmother elected for him to receive hospice care at home in large part due to the restrictive policies in nursing homes and hospitals at the time.
This anecdote is not unique to my family. Death is an intimate and inescapable part of life; thus, it is relevant for all of us. Although I am not certain how others cope with a dying loved one, I assume, at the very least, that everyone desires a chance to express one last goodbye – preferably face to face. I’m sure many of you are having flashbacks to when you said your final words to a family member or friend. The experience is recreated so perfectly in our mind that we relive every emotion present on the sorrowful day – we can’t escape. Despite the paralyzing feelings, I guarantee that none of us would choose to go back in time and erase that memory. The significance of saying goodbye for us and our loved one greatly outweighs the emotional burden it may carry.
My grandfather’s passing prompted me to reflect more broadly on COVID-19 hospital-based policies that resulted in patient isolation and lonely deaths. I must acknowledge that in the early days of the pandemic, everyone was fearful, and it may have been reasonable then to debate whether allowing visitors in hospitals was safe or if it was unwise. However, this debate never occurred and public health officials sided with the consensus that visitors should not be allowed or be heavily restricted.
What’s worse is that, as time passed, the policy was never reevaluated to determine if it provided a net benefit. It seems as if our hyper-focus on the virus blinded us to the negative implications of certain policies – a calamitous error that will leave a stain on public health’s reputation for decades. Even in times of crisis, we must be able to weigh all the pros and cons of a policy – especially those that are less obvious.
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There are many things to consider when thinking about a hospital policy prohibiting visitors for patients – I will discuss a few that seem relevant to me.
We should first discuss the goal(s) of the policy and who/ what might benefit from it. The most likely goal was to reduce the spread of the virus, and thus lower the burden of COVID-19. Now let’s assume, hypothetically that the goal was met – who/what benefits? The answer can take on many forms: less spread of the virus in the hospital, less spread of the virus to clinicians, less spread of the virus out of the hospital, less COVID-19 in the community leading to less hospitalization, and less death from COVID-19. This policy may seem like a no-brainer given the potential upside; however, we must not forget the flipside – the cost.
Some harms include patient isolation, patient loneliness, unfavorable/depressing healing environment, declining mental health, emotional strain on patients/families, clinician burnout from taking on the additional role of family support, and time spent by clinicians talking on the phone to family members rather than patient care. The list could go on and on, but as I hope you can see, the cons of this policy are not benign. This is even more concerning given the fact that we are uncertain whether the stated goal, “to reduce the spread of the virus, and thus lower the burden of COVID-19”, is achieved by prohibiting visitors for patients.
Now, the empirical question, does limiting visitors reduce the transmission of SARS-CoV-2 and thus lower the incidence of COVID-19? The answer to this question is important and can provide a framework for thinking about the risk-benefit calculus of allowing visitors. Unfortunately, we don’t have an answer or any high quality data supporting this question, as shown in this systematic analysis. As discussed previously, there are a host of possible upsides to this policy; however, it is unclear if they are true.
Even with reasonable predictions, we live in a world that is messy and random, and thus require rigorously designed studies to uncover one form of the truth. I imagine that a cluster randomized controlled trial could have provided an answer. This would consist of randomizing hospitals into two groups: ones that allows visitors and others that restrict them. Then, over time, outcomes would be tracked in each group to measure the impact of the policy. I specifically left outcomes vague because the pertinent outcomes are debatable, but I would argue that a good starting point is COVID-19 hospital admissions. Another relevant outcome may be the number of positive COVID-19 cases in the surrounding community – although this would be more difficult to directly link to the policy. The broader point being that there are ways to uncover answers. There are smart people in positions of power with resources that can design and conduct such studies. Ultimately, they failed us, and we are left without answers and policies that caused significant harm.
My last thought, perhaps one that supersedes the two prior discussions, is an ethical dilemma. Under what circumstances grant hospitals the authority to prohibit visitors from a deteriorating patient or more generally, any patient?
This is an ethical question because the answer is dependent on our individual values and morals; thus, there is not an absolute right or wrong response. However, I think there is a human answer that many of us will agree on. A thought experiment may paint the picture clearly.
Let’s imagine that your loved one, a parent, sibling, or spouse, is suffering from an illness and is receiving medical care in the hospital. You are told that you cannot visit this person. You are told the patient will be isolated. You are told that you can only have a video/phone call with this person. You are told that this is happening for your protection.
Who is benefiting from this policy? How do the benefits outweigh the downfalls? In my opinion, this scenario is unjustified, unethical, and results in a net harm. But maybe you disagree with me – that is totally reasonable. The point here is that families were not given the capacity to make this decision for themselves.
Now consider that your loved one remains in the hospital but is declining and will pass away soon. You are told that you cannot visit this person. You are told the patient will be isolated. You are told that you can only have a video/phone call with this person. You are told that this is happening for your protection.
Now how do you feel? Is it still justified to not have the ability to see a loved one? This image is frightening, but most of all painfully sorrowing. It is almost impossible to conceive how this was the reality for many families during the pandemic.
I have a hard time understanding how hospital and public health administers justified their decision to allow death in solitude. It is immoral and wrong to take away a patient’s autonomy to spend their final moments with family and loved ones. Families have the ethical obligation and authority be with one another, especially in delicate times like death. It is difficult to reconcile that this right was stripped from them.
I feel like the pandemic dehumanized many of us. We withdrew or were restricted from countless experiences that make us human – actions as simple as hugging our grandparents, shaking a friend’s hand, worshiping with religious groups, going to sporting events with friends, etc. Now we must ask: why did we forgo these activities? I think the leading answer is that public health officials led us to believe that doing so would put ourselves and others at risk – i.e. hugging grandma would sentence her to death. Our only fault (not entirely our own) was actually believing them.
I think many of the pandemic policies can be summed up with a simple phrase: “We missed the forest for the trees”. Public health had a myopic focus on stopping the spread of the virus through policies such as limiting visitors in hospitals, masking children, school closures, vaccine mandates, isolating older individuals and by doing so, were unable to see or predict the detrimental harms. Obviously, this doesn’t apply to all policies, but many of them failed to consider what it means to be human. In the future, I believe it will be prudent to err on the side of debate rather than consensus (arguably among only a few) when making decisions with vast implications.
I write this essay because I wish all families had the chance to say goodbye to their loved one like mine did with my grandfather. We must never forget the suffering that occurred from these policies and remember to fight against this in the future – as many individuals courageously did during the pandemic.
I am a medical student and the editor of Sensible Medicine. The thumbnail image is a picture of my late grandfather and me.