Bioethics Forum Essay
“You Can See Your Loved One Now.” Can Visitor Restrictions During Covid Unduly Influence End-of-Life Decisions?
One of the factors considered most important by dying patients and their families is the opportunity to be together. For many of our hospitalized patients in palliative care, the presence of loved ones at the bedside is such a given that we don’t even address it explicitly in advance care planning discussions. So, it comes as no surprise that Covid- 19-related visitor restrictions affecting hospitalized patients might impact end-of-life decision-making, potentially in ways that are ethically problematic.
At the height of the pandemic, our institution, like many others, did not allow visitors for most patients. (Visitor restrictions remain in place for Covid patients but were lifted on June 5 for other patients.) This policy was necessary as we strove to prioritize the health of our patients and staff, as well as our community. Like other hospitals, ours made an exception to the visitor restriction: up to two family members or other loved ones were allowed to visit when a patient was “actively dying,” meaning that death was expected within hours to days. This exception applied regardless of whether the patient had Covid. We feel fortunate that our institution allowed this compassionate exception. But we recognize that it could have had an unintentional impact on decision-making.
As palliative physicians, part of our role is to help families and other loved ones understand the patient’s condition and anticipate what’s next. When we say that a patient may die in the hospital, naturally, loved ones are desperate to visit. For patients who required life-sustaining treatments in the ICU, a dilemma we faced was how to determine which patients were close enough to death to warrant a visitor exception. And how to ensure that that determination was unbiased.
For patients who were ill enough to require life support in the ICU, one way to guarantee family presence was to withdraw life-sustaining interventions (such as a ventilator) during the visit, resulting in a patient’s death. We worry, however, that this option might have inadvertently encouraged uncertain or conflicted surrogates to withdraw life support as a way to ensure their presence at the bedside of their loved one. They were told, “If you decide to withdraw life support, you can visit and be present when your loved one dies.” Did this statement nudge them toward the decision to withdraw life-sustaining treatments? Patients (or surrogates) might have felt that the visitor policy had undue (and unintended) influence on what should be a clinical decision influenced by their goals and values. One alert patient in our hospital who had been on a ventilator for a long time without improvement was deciding between withdrawing it for palliative purposes and having a tracheostomy for potentially life-long ventilator support. As he put it, “It feels like you are keeping [my wife] from me to force me to end my life.” His statement made us wonder how families were perceiving our policy.
Virtually every patient in the ICU is critically ill and potentially facing the end of life at any moment. Yet, we worry that strict adherence to the end-of-life exception to the visitor policy could have caused harm by being perceived as an incentive to withdraw life support. On the other hand, an even stricter policy of no visitors could increase aggressive care at the end of life. Patients and surrogates could opt for more aggressive care than they otherwise might have in pre-Covid times, seeing it as the only path to reunion.
As Covid-19 is highlighting systemic inequality and health care disparities, we also worry that certain populations may be more vulnerable to the application of the visitor exception. We wonder whether we are more likely to bend the rules for some patients and families—and that implicit bias may play a role. Most fundamentally, we are concerned that the visitor exception might be “bait” for families to withdraw life support when there is a conflict between the care team and the patient or family–when, for example, the care team deems their goals unrealistic or considers the care futile. Such conflicts are especially likely when there is implicit bias. These situations are examples of how a visitor exception policy might influence a decision that should be informed by clinical information and patient and family values.
In reality, there is no clear solution. Visitor restriction policies during the pandemic aim to balance public health safety and individual care needs in the context of an ever-changing infectious risk. However, it is important to recognize that there are potential risks to these policies, and, for that reason, they require ongoing re-evaluation and flexibility. Explicitly acknowledging these issues is essential to helping to ensure that a visitor policy and compassionate exception do not inadvertently sway undecided families and inappropriately advance a palliative care plan.
Melanie Smith, MD, Julia Vermylen, MD, MPH, and Joshua Hauser, MD, are palliative care physicians at Northwestern Feinberg School of Medicine and Northwestern Memorial Hospital in Chicago.
Thank you for your thoughtful comments and reflections Dr Smith, Dr Vermylen and Dr Hausser. At the beginning of the COVID-19 pandemic, I was a floating nurse technician when I was a nursing student in New York City and our floors at the time allowed no visitors regardless if the patient was actively dying, similar to many hospitals at the beginning of the pandemic. It is difficult trying to compare the rate of patients and families that choose to pursue further aggressive treatment versus palliative care versus withdrawing life support during the time of COVID compared to a time without COVID. That time when no family members were allowed to visit, however, created such a difficult time for many families where it was even that much more difficult in choosing any option except for further aggressive care when they could not see, visualize, or hug their loved ones. I appreciate your reflection and the notion that as many institutions opened up to visitors for patients that were actually dying, this has created a biased option for families. It is truly important that as healthcare providers we reflect on the impact of these institutional policies and reflect how similar notions sway the thoughts and wishes of our patients and families.
Hi, this is a thoughtful post. I worked at a hospital in New York City throughout the pandemic and helped to screen visitors; as patients were allowed only one visitor at a time, unless critically ill and approaching death, this was understandably incredibly upsetting for families. I understand the rationale for such policy, for infection control and operational success with the limited staff/resources, but your article does make me think that it likely had a profound impact on end-of-life decisions. As family input is often important in decision-making, the limited patient contact prior to imminent end-of-life undoubtedly influenced this decision-making capacity. As patients’ families were grieving their loved ones’ illness as well as the overall effects of the pandemic, the isolation from loved ones likely affected the quality of education and understanding regarding end-of-life treatment options. As less family members were able to visualize the patient throughout the course of hospitalization, it allowed for less time to process and assess the situation. End-of-life was presented as much more imminent and definitive by the time that patients’ families were allowed to visit their loved ones, and I can imagine that this created a greater sense of helplessness and loss of control in discussing end-of-life care options.
Thank you for your comment. I think that this is something very important to reflect upon and consider. COVID has impacted everyone in so many different ways and how much harder it have to have been to choose an option to further care when you are unable to see a loved one.