Coronavirus shows us why the time to decide on end-of-life care is when you're not sick

More than ever, this is time to have conversations you never wanted to have about what parts of living are most important to you.
Image: It is time to have the kinds of conversations that you never wanted to have.
It’s important for patients to decide in advance and to equip doctors with the knowledge of what kind of treatment they would prefer.gorodenkoff / Getty Images
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By Dr. Rita A. Manfredi, Dr. Breanne Jacobs and Dr. James P. Phillips

We are emergency physicians who work on the front lines battling COVID-19 in academic and community emergency departments — and we are worried. We hope to save every person struck by coronavirus (or any other affliction), but the nature of life is that, sooner or later, we won't succeed.

Limited supplies, like N95 masks, coupled with the possible need to ration resources, most notably ventilators, already haunts us. But the reality beyond the headlines is that, even if we could provide everything that every patient needed, it will often not be enough.

Physicians dedicate their lives to the treatment of illness and the prevention of death and, in conventional times, we do so without restrictions on materials or space because the resources we need are usually available in the American health care system. Those lifesaving resources are offered to all, even if the likelihood of a meaningful outcome is poor — including when it comes to ventilators.

The reality is that patients who require mechanical ventilation for any reason have high mortality rates, and those high rates increase with the age of the patient. That reality doesn't change when it comes to COVID-19. In fact, early data suggests that perhaps the majority of COVID-19 patients who require life support ventilators still succumb to the illness and die. Unfortunately a person who dies connected to a ventilator spends their remaining time alive sedated, with a plastic tube in their windpipe, and attached to a machine, unable to communicate with their loved ones.

Doctors recognize that further advanced interventions on patients are often simply staving off death, rather than prolonging life. But, we persist in our standards and continue to "do more."

That means it's important for patients to decide in advance and to equip doctors with the knowledge of what kind of treatment they would prefer if they find themselves facing end-of-life treatment decisions.

Here is why: The initial steps taken to care for you in the emergency department set the stage for what happens in the intensive care unit and after. A snowball effect can develop, during which intervention follows intervention — for doctors to find out only later that you never would have wanted to be kept alive in certain ways, or if certain outcomes were a given.

In short: Some people may not want to be reliant on artificial life support for the rest of their lives, and it would be better for them and for their doctors if the doctors had that information in advance of making any decisions.

That is why now, more than ever, is time to have conversations you never wanted to have, about setting goals and plans for end-of-life medical care, called advance care planning. Be clear both about your own wishes, and reach out to loved ones to make sure they are doing the same.

The first step is thinking through what you value. What gives you joy and meaning in life? What makes you get out of bed in the morning? The answer is different for everyone — sometimes wildly so — which is why it's important to have your own answers to apply to the circumstances you might find yourself in.

We have had patients tell us that, if they can no longer go out to eat at a restaurant and savor the cuisine, then they would rather not be alive. Others have said that once they can no longer bathe or toilet themselves, they would rather be dead. Some patients with ALS (commonly known as Lou Gehrig's disease) say that they do not mind if they are bed-bound or wheelchair-bound, but they want to be able to recognize and communicate with their family members no matter what.

Once you have gotten clarity on what you would want if you were to become incapacitated in different ways, you need to also confront the possibility of becoming so sick that you're unable to speak for yourself. Because this can happen at any age, it's essential that you determine who you want as your representative — known as a health care proxy — when you can't make decisions for yourself, and then communicate your desires to that person.

The hardest of the questions to ask yourself may be what to do if you become so ill that you are unlikely to recover and would require artificial life support for the duration of any time you have left. Would you prefer to continue indefinitely on artificial life support, or would you choose to allow yourself a natural death?

People have different answers. Some may say, "I prefer nature to take its course," while others might say, "Keep me alive at all costs, no matter what; I can't bear the thought of dying." Your personal decision should be based solely on your values — and not a lack of health resources or what might be important to someone else.

This type of planning is always important, but the emergence of the coronavirus has made all of us a little more aware of our own mortality, and in some cases, of our risks.

So today while you are sitting at home with those you love, or calling to check in on them, please take the time to find out more about their wishes for end-of-life care.

It is also critical to remember that if you forgo artificial life support, it doesn't mean that doctors and nurses will "just let you die." It means that a different type of care — meaningful, gentle and soulful palliative care — should be provided.

Many patients, for instance, qualify for the Medicare hospice benefit and are able to go home with their family members while a community hospice organization provides nursing support, medical equipment and medications to make them comfortable. Others with uncontrolled end-of-life symptoms can be admitted to an inpatient hospice facility with staff providing comfort care. Patients who are unable to go home independently but not in need of constant care may be placed in a nursing home with the additional overlay of hospice services. Studies have shown early palliative care with attention to quality of life actually may increase a patient's life span.

No matter what age you are, though, it is time for these conversations with your loved ones. Fred Rogers, the beloved master of children's TV programming, said it best: "Anything human is mentionable, and anything mentionable can be manageable." Being able to talk about death and mention bad outcomes makes the coronavirus situation more manageable for everyone.

And if every person has engaged with that reality and communicated their preferences for end-of-life treatment, that enables us doctors to provide the best care possible — even amid the worst possible circumstances.