{Update from Sam} When the coronavirus and its resultant disease, Covid-19, first appeared on the scene in New York and Washington State, alarms went off throughout each state’s respective government offices. “Would there be enough personal equipment to protect front line health care workers? Would there be enough health care workers to care for the onslaught of patients? Would there be enough beds to care for the tidal wave of illness? And, most critically for the critically ill, would there be enough ventilators?”
No ICU nurse, no critical care physician, no hospital administrator, no state medical officer, and no state governor wants to treat critically ill patients, dying with potentially reversible respiratory failure, without the option of the final treatment – mechanical ventilation. That seems like giving up too early and certainly is like fighting with one arm tied behind the back.
Covid-19 has focused public attention and awareness on ICU care like never before.
Covid-19 News Coverage Exposes the Reality of Mechanical Ventilation
But what has Covid-19 taught us about mechanical ventilation and ICU care? It has highlighted that mechanical ventilation works well when the respiratory failure is caused by something other than primary lung disease (for example, the trauma of a motor vehicle accident compounded by a simple pneumonia) but is not so effective when the respiratory failure is caused by advanced, complicated lung disease (for example, coronavirus inflammation with fluid-thickened tissues complicated by a bacterial pneumonia, the added physical burden of obesity and the weakness of old age). In New York, during the initial surge, a majority of Covid-19 patients over the age of 65 who are placed on ventilators did not survive.
Many of the survivors of mechanical ventilation relate tales (particularly vividly in the era of Covid-19) of confusion, fear, and disorientation – not knowing if they were alive or dead, or getting better or worse, as they were suspended in a timeless, drug induced coma, designed to let them accommodate to the gagging, choking fear of a rigid tube in their throat; the restraints on their arms and legs to keep them from pulling the tubes out of their mouth, nose, and bladder; and the disorienting 24/7 whir and glow of machinery and monitors.
And remember, many survivors of mechanical ventilation do not thrive. Many are destined to suffer from disabling heart damage, kidney failure, brain damage, post-traumatic stress disorder, and debilitating physical weakness. Only those who do thrive appear in local news reels describing their experience and distorting our understanding of it. The large minority of ventilator survivors never appear in public again.
How does this relate to “a Good Death”? Both directly and indirectly.
Defining a Good Death by Understanding a Bad Death: a Hegelian Dialectic
Whenever a panel, committee, or colloquy addresses the topic of “a Good Death,” the process breaks down amid a dialectic on its definition and a discussion of the details. Some people want solitude. Some want a crowd of revelers. Some want music (some of those want Bach and others want the Bee Gees) while some want tranquility. Some want to meditate with herbal tea, others want to celebrate with bourbon.
But as Hegel might argue, the best way to define a good death is to agree that it is opposite of a bad death. And a bad death is defined by Covid-19.
First, the critically ill Covid-19 patient is separated from their family and sequestered in an ER alcove or an ICU bed, surrounded by throbbing machines, glowing monitors, and beeping alarms. Then they are tied to 
the bed – hands and feet restrained to keep themselves in place and to protect the IVs and catheters that have been placed in every orifice. They are gagging, tearing up, choking, and struggling to breath when awake or they are semi-conscious when sedated to be kept from fighting the machinery.
These patients have lost control. They are in pain. They are unable to communicate with family and they cannot be touched for human comfort. They are passing their last few hours, days or weeks suspended in a semi-conscious fog of fear and confusion. They are betrayed by their surroundings, abandoned by their loved ones,and living and dying in fear.
Fortunately, the broad brushstrokes of a good death have been well codified and described.
The Qualities of a Good Death
The five most important qualities that define a good death are control, comfort, closure, affirmation, and trust. And these are the characteristics that are desperately lacking from the Covid-19 experience.
Control means having some influence over where, how, and by whom one is being treated. At the end of life it is usually expressed by declining some intervention – like the indignity of restraints or bladder catheterization. In my father’s case, he would not allow his caregivers to use a mechanical lift to get him out of bed, even though he understood that becoming bedbound would hasten his death.
Comfort is, of course, the absence of pain. No one wants to suffer the stiff lungs and choking of Covid-19 without the promise of total recovery – a promise that cannot be kept in most advanced cases.
Closure is the opportunity to reconcile with family and friends. It is the chance to forgive and to be forgiven through close contact and personal interactions – circumstances denied to those suffering by the isolation of pandemic mitigations. It is the last chance to make one’s memory a blessing.
Affirmation is the gift of being valued for who we are and who we have been. This appreciation for one’s life and legacy is a gift that the ICU staff wants to give but cannot.
Trust is the consolation one takes in knowing that the inevitability of death is appropriate under the circumstances of advanced age and disease and that the appropriate treatment is being delivered by caregivers of one’s own choosing. Again, this kind of trust is absent when a Covid-19 patient is torn from their family and strapped to a bed and life-support equipment by a masked and begoggled crew of strangers.
In the befogged consciousness of ventilated patients and the crush of incident in a pandemic ICU, control, comfort, closure, affirmation, and trust become helplessness, pain, isolation, denial, and fear.
The ICU Experience is Not Unique to Covid-19
Of course, Covid-19 is not unique in creating this dysphonic convergence of toxic circumstances. Any ICU admission has the potential to deteriorate into this morass. But the images from a pandemic ICU of patients, dehumanized by machinery, trying to connect to loved ones through an iPad held by a caregiver also dehumanized by personal protective equipment is new, and news, to most lay persons.
A good death is hard to define but achieving it starts by visualizing the worst possible death –suffering fruitless treatments while isolated from one’s family – and working backward to something that is personally acceptable. The news coverage of Covid-19 has helped us with that visualization. It is now the responsibility of every patient over the age of 65 (and every adult relative of that patient) to take advantage of that vision; to reconsider the difficult end-of-life conversations; and to revisit their Advance Directives.
Covid-19 has shown us the worst possible death. Now, define your response to that.
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