We need to respect the choice not to die of COVID-19 alone

There are values that trump the singular goal of lowering COVID-19 infection rates. One of those is accompanying loved ones as they pass away and providing them with clergy.

(RNS) — How do you want to die?

If you’re like 70% of Americans, you want to die at home accompanied by your loved ones. But even before the current pandemic, 68% did not get that kind of death.

In part because we’ve attempted to hide the reality of our finitude for so long, death in the U.S. has gradually become medicalized. Medicine has waged a war, aided by ever-improving technology, to forestall death as long as possible, even if some patients’ most important moments were spent in a hospital, largely disconnected from loved ones and often unaware of what was going on.

Our culture of medicalized death has become so strong that, remarkably, overtreatment still takes place in 38% of cases, when the patient has made it known that they do not want it.

It was important to resist this culture even before the COVID-19 pandemic. But as we learn more about how many people are dying of this disease, the urgency has become that much greater. It is now clear that ventilators can save the lives of only a minority of patients with advanced cases of the disease. At the same time we are beginning to absorb how often those who die spend their last moments isolated in ICUs, with no family to tell them they are loved and no religious presence to administer last rites or pray with them. 

Because those under 50 account for a far higher percentage of hospitalizations than we anticipated, it is more important than ever that people of all ages have difficult but direct conversations about what they regard as a good death under these circumstances. Now is the time to make clear in one’s legal documents and in conversations with loved ones how we want to die.

Dying of severe respiratory disease can be a grim experience without the proper care. Happily, home hospice staff are practiced at helping patients die well in these situations. These skilled practitioners are trained to use the right amount of morphine and concentrated oxygen to relieve the need to gasp for air, while also employing muscle relaxants and anti-anxiety medications to keep the patient at ease.

Because of the staggering number of COVID-19 deaths, however, we don’t currently have the resources for those who would need this kind of expert care. We’ve done an excellent job thus far of ramping up our resources for intensive clinical care, even setting up ICU beds in public parks. We must act with similar urgency in ramping up our levels of emergency palliative care so that patients who want to may die at home. 

A patient in a biocontainment unit is moved on a stretcher at the Columbus Covid 2 Hospital in Rome on March 16, 2020. (AP Photo/Alessandra Tarantino)

In a recent conversation I had with Edo Banach, president and CEO of the National Hospice and Palliative Care Association, he said that data from other countries suggests that receiving home care actually produced better results than getting clinical care.

“In fact,” said Banach, “a recently released study found that the death rate at hospitals in Italy was twice that of those who choose to be treated at home. Hospitals are breeding grounds for this disease.”  

Doesn’t dying at home raise the risk for infection for hospice professionals as well as family? Banach said that if we make sure they have personal protective equipment, home hospice care providers are at least as safe as those in the ER and ICU.

Protections can be implemented for families who consider the admittedly higher risk worth it. “Suppose the risk level is raised a small percentage,” said Banach. “That has to be weighed against the very good chance of dropping a loved one off at the hospital and their dying without being able to say goodbye. That’s a very personal decision that family members ought to be able to make.”

Simply put, there are values that trump the singular goal of lowering COVID-19 infection rates. One of those is the compassion to accompany loved ones as they pass away and provide them with clergy.

As a professor of theology and bioethics, I encounter many people in my courses and public lectures who believe that traditional Christian commitment means doing everything possible to preserve life. In reality, preserving life at any cost is the kind of idolatry that rejects not only the example of many Christian martyrs but the example of Jesus himself that Christians celebrate this Holy Week.

Since the Middle Ages, my own tradition, Roman Catholicism, has developed a moral framework around the idea that certain life-sustaining medical treatments are optional. Choosing to die intentionally does violence to the inherent and equal dignity of human life. But choosing to live in a way in which one foresees that death is the likely result can be a praiseworthy choice.

Even very traditional groups, such as the Catholic Medical Association, are arguing for the “development of home health care specifically for COVID-19 patients, including palliative care and hospice” when such patients choose to live out their final days and hours with family.

No one has been more outspoken than I have about the discrimination our vulnerable elderly may face in our present moment. As they face decisions about their care, the elderly should hear in our voices and see in our actions that their lives matter just as much as those who are younger. If ICU treatment is what they want, equal access to that bed is a matter of civil rights.

But what if that isn’t what they want? What if they and their families prefer a communal death? Even if it marginally increases the chance of infection, this is something we should not only permit, but encourage.

This article is the first in a two-part series exploring the debate over preserving life during the COVID-19 pandemic.