One way the coronavirus pandemic has upended what we think of as normal life is how we think about mortality.
How? First, while there’s still so much we don’t know about the virus, what’s clear is that it can, with startling rapidity, do fatal damage even to otherwise-healthy people. It might be a matter of just days or weeks between the time a person first experiences symptoms and the time that person becomes critically ill.
Second, the very sick patients in assisted living, skilled nursing facilities, or in hospital intensive care units must bear the burden of illness alone; visits from loved ones are prohibited. That means a loss of the comfort of being together through a harrowing ordeal.
Third, patients on ventilators must be sedated, and are unable to speak to their loved ones. So there’s no way to have any kind of conversations, much less talks about goals of medical care. Nor can nurses or doctors do what palliative care and hospice physicians have always done best, which is to listen to patients about their lives, their hopes and fears, and to assure them with their very presence that the patients are well cared for.
Fourth, because we cannot gather in groups, we cannot depend on the comfort of family and friends and the time-honored rituals of grieving at funerals or memorial services. Much has been written about the concept of complicated grief, and this pandemic will certainly require a whole new chapter.
This is the horrifying reality that we see and read about, day after day. So it seems to me that this National Healthcare Decisions Day takes on more of a sense of immediacy than it may have in the past. That is, now is the time to think about what kind of care we’d want if we could not speak for ourselves; discuss it with family; get it in writing; and designate a health care proxy.
Of course, it is still true that it’s impossible to decide what kind of treatment you’d want, or not want, if you don’t understand what these treatments entail.
Let’s talk about ventilation, as an example. The best article I’ve read about the why’s and how’s of ventilation is one by Daniela Lamas, MD, a critical care physician at Brigham and Women’s Hospital in Boston and I urge you to read it.
Before Covid-19, my advance care plan said “no thanks” to it. But it seems key to saving the lives of some extremely ill Covid-19 patients and I would not refuse it if I had the virus.
What Dr. Lamas does not mention, though, is that typical time on the ventilator has been longer, on average (up to two weeks or even more) for Covid-19 patients than it has been in conventional uses. That in itself can lead to possible lung damage as well as emotional and psychological issues for recovering patients. Nor does she mention the sad fact that being on a ventilator does not guarantee survival. While it’s still too early to say what percentage of Covid-19 patients do survive ventilation, a large study on that, done by the Intensive Care National Audit & Research Centre in London, found that just 33 out of 98 ventilated patients in the U.K were discharged alive.
So there’s plenty to think about on this National Healthcare Decisions Day. But, hey, we’re home, we’ve got some time on our hands. Pour yourself a glass of wine, or something stronger, and talk it over. And if you need a little guidance getting started, here’s a great resource.