COVID-19 has upended so much of what we’ve thought of as normal life, including how we stay connected to family and friends; how we work; and how we educate our children. It’s also affecting how we might be thinking about our own mortality. While there’s still so much we don’t know about the coronavirus, what’s clear is that it can, with startling rapidity, do fatal damage even to otherwise healthy people.
So there is more of a sense of immediacy about the importance of considering the kind of care we’d want if we become seriously ill and could not speak for ourselves; discussing it with family; putting it in writing in the form of an advance directive; and designating a health care proxy to carry out our wishes. Of course, these are the kinds of conversations no one wants to have, ordinarily. And the fact is, most people don’t have them.
Earlier this year, before the pandemic, legislation was introduced in the state Assembly to address this disconnect — aimed at making sure that the treatment wishes of seriously ill patients are followed. Basically, it would create a POLST (Practitioner Order for Life Sustaining Treatment) registry and enable any New Jersey driver with a validated permit or probationary or basic driver’s license, or his or her designee, to complete the POLST form at the Motor Vehicle Commission (MVC) and upload it to the registry.
The one-page POLST form is almost elegant in its simplicity. It takes what I’d call a “Goldilocks” approach to the major questions about medical interventions, artificial feeding, CPR (cardiopulmonary resuscitation) and airway management (intubation and mechanical ventilation). That is, full treatment (defined as “all appropriate medical and surgical interventions as indicated to support life”); limited treatment; or symptom treatment (defined as “aggressive comfort treatment to relieve pain and suffering”).
But POLST forms are usually used for people who have been diagnosed with a specific serious illness. The key difference between a conventional advance directive and the POLST form is that the POLST is a medical order. It becomes part of your health record. And it must be filled out and signed by a physician or advanced practice nurse based on a conversation with you — not an easy requirement to meet if you are filling it out while on line at the MVC.
Despite its laudable intent, the bill (A-2472) is not an answer to the dilemma of how we encourage more people to talk about their end-of-life goals and create their advance directives. The fact is, you cannot quickly and simply check off any boxes, or fill out any advance directive, unless you understand what the range of treatments entails. And as we learn more about how COVID-19 can wreak havoc on patients of all ages, and about how valorous physicians, nurses, respiratory therapists and EMTs are treating it, we may even change our minds about what we would want, or wouldn’t want, under those circumstances.
The ‘big three’
Advance directives, including the POLST form, focus largely on what I think of as the “big three” — CPR, mechanical ventilation (intubation and ventilators) and artificial nutrition (feeding tubes). All three can come into play if a patient is critically ill.
Since COVID-19 is a respiratory illness, let’s focus on ventilation. Before the pandemic, for example, 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 despite the odds, I would not refuse it now. But it is not a choice to be made lightly. Patients on ventilators must be sedated, and cannot speak to loved ones for the duration. The typical time on the ventilator has been longer — on average up to two weeks or sometimes much longer — for COVID-19 patients than in conventional uses. While on a ventilator, patients must have artificial nutrition. They must be monitored not only for lung function, but also for possible blood clots, bed sores, and heart or kidney damage. Patients who survive ventilation may also suffer lung damage as well as subsequent emotional and psychological issues.
The sad truth is that the survival rate for patients on ventilators is not encouraging, especially for patients over age 65. A study done by the Intensive Care National Audit & Research Centre in London found that just 33 out of 98 ventilated COVID-19 patients in the UK were discharged alive. Another recent study of COVID-19 patients over age 65, at Northwell Health hospitals in the New York area, found that the overwhelming majority of people who were on ventilators died.
It’s important to learn a lot more about the big three treatments, and there are many reliable sources to get you started. Here’s a very good one about ventilation, for example. Then, once you feel confident about what you would want or wouldn’t want if you couldn’t speak for yourself, don’t keep it a secret! Put it in writing, in an advance directive. Or make an audio or video recording of your wishes, preferences and goals, and be sure to identify yourself and date it. And designate a health care proxy who will be able to speak for you.
More important, though, talk it over with your loved ones. Give them the gift of guiding them through difficult choices for you, without having to guess what you’d choose for yourself.