Amid Pandemic, the Way We Talk About Death Is Changing

On a Monday evening in early April, a group of people logged on to a video call. Their faces assembled in neat rows like postage stamps across the screen. Some sat in bedrooms. Others lounged on front porches and lawns.

“Welcome to a virtual Death Cafe,” said Nicole Heidbreder, the meeting’s host.

Heidbreder, a hospice nurse and end-of-life doula, has hosted public conversations about death in the backroom of The Potter’s House in Washington, D.C., since 2017. But last month, the coronavirus pandemic forced her to move the gatherings to a virtual platform.

Heidbreder set the rules for new attendees: Don’t sell anything. ‘I’ statements only. No set intentions. Attendees closed their eyes and lifted their hands to their hearts. As Heidbreder instructed them to take a deep breath in, one participant seized the opportunity to take a swig from a cocktail glass.

After a few more breaths, eyes opened, and the meeting was on.

Heidbreder said more people have taken an interest in her gatherings lately, and the COVID-19 pandemic has added a “different gravity and magnitude of seriousness” to the conversations she’s having. Attendees have always expressed anxiety about death she said, but COVID-19 has amplified those fears.

As of April 15, more than 101,000 people worldwide have died of the novel coronavirus. In the U.S., 42 states, the District of Columbia, and Puerto Rico have issued orders for people to stay in their homes to slow the spread. But with at least 1.6 million infected globally, the mortality rate has forced an increasing number of people to confront a topic they tend to otherwise avoid: death.

Rev. Rosemary Lloyd says COVID-19 is “putting the brightest yellow highlighter through the truth that has always been there, which is we are mortal, and nobody knows the day or the hour of their death.”

Lloyd, an ordained Unitarian Universalist minister, came to ministry in her 40s with a focus on end-of-life care after serving as a nurse for many years. She led her own church for nine years in Boston before joining the Conversation Project, a public engagement initiative that works to encourage conversations about dying and end-of-life wishes, as their adviser to faith communities.

“Each of our traditions has stories of exemplars,” she said, “whether it's the prophet Jacob [in] the Torah where he gathers his family around him and tells them where he wants to be buried and how they should live … [or] whether it’s Jesus who day after day lets them know, ‘I will not always be with you’ and then says ‘so here is how to live and to love one another.’”

In this moment, Lloyd said faith communities should be doing what they always do: telling stories, week after week, and challenging people to live ethically with love, compassion, and forgiveness, and to act with justice — all themes Lloyd says should be present in end-of-life conversations.

With restrictions on public gatherings, it’s been a struggle for many faith communities just to hold weekly services, let alone guide their congregants through the hard questions of illness and death. But these conversations have “never been more important,” said Rev. Gloria E. White-Hammond, co-pastor of Bethel AME Church in Boston.

White-Hammond, who trained in surgery and practiced emergency medicine before becoming a pastor, has been hosting conversations about death and dying at her church for more than five years. In 2015, she partnered with the Conversation Project to host a training at her church, as African Americans are significantly less likely than whites to have advanced directives in place. Forty-five members of the congregation showed up.

“It was clear that people wanted to talk about this,” White-Hammond said.

After the training, she learned about the Five Wishes, an easy-to-understand advance-directive document, through a palliative care doctor. Together with members of her congregation, she utilized the Conversation Project and Five Wishes resources to develop a unique three-session program called “Planning Ahead.” The name, she said, is derived from scripture.

“Jesus has come, and he’s gone to prepare a place for us,” she said. “And so, we’re planning to get to that place and to make that a smooth transition.”

Now, with a number of her congregants sickened by COVID-19, the program has become even more important — the church is slated to host its first virtual session later this month.

'Complicated griefs’

In the Jewish tradition, members of the community help bury the dead, each pouring soil over the casket; with current cemetery restrictions, that’s no longer possible. And with social distancing in place, the Jewish custom of sitting shiva for seven days with the family to mourn is also off the table — though there have been efforts to host virtual shiva sessions on platforms like Zoom.

At Hebrew SeniorLife, New England’s largest nonprofit provider of care and living communities for seniors, Rabbi Sara Paasche-Orlow and Rabbi Joel Baron are leaning on their faith as they work to support more than 3,000 seniors. Paasche-Orlow said that despite the circumstances, the response from their health care providers, including their chaplains, has been inspiring. In preparation for Passover, staff members stayed late to make the kitchen kosher so elders could celebrate the holiday.

“We are guided and held by a tradition that looks back and sees how we have emerged from times of incredible threat and suffering,” Paasche-Orlow said. “Our tradition will survive, and we will be able to breathe and hold the losses while learning and moving forward.”

Dana Presley Cosper, who served as the manager of pastoral care at Bayfront Health hospital in St. Petersburg, Fla., said that “we’re going to see more complicated griefs” during and post COVID-19.

Presley Cosper, who taught a course called “Perspectives of Dying” for 14 years at Eckerd College, said without our ability to commune with others, people of faith are going to have to be creative with what they’re doing to keep hope, whether it’s rituals, prayers, or mantras.

“What are some of those things we can still do to help us get through each day?” she said. “And to live knowing that we could die or someone that we love could die soon?”

Presley Cosper said she is taking time to notice and appreciate the things her husband and her son are doing in this new and changed world.

Living through COVID-19

Corey L. Kennard, pastor of Amplify Christian Church in Detroit, was recruited by the late Dr. Richard Payne of Duke Divinity in the early 2000s to help create a national program that addressed end-of-life care for African Americans. Since then, Kennard has traveled the country speaking with faith leaders and health care providers about caring for people’s spiritual lives during their death.

One component of that care, he said, is talking about death as a part of life in our congregations. Faith leaders often turn to preaching about hope, healing, and getting through — but we know that not everyone is going to be healed, Kennard said. Even though Lazarus was raised from the dead, he died again.

“I feel like my colleagues do a great job of sending people off after they die and preaching funerals and things of that nature,” he said. “But what are we doing on the front side to make that transition a little more comforting for those who have been left behind?”

Advanced care planning is one thing Kennard said faith leaders can and should be engaging in to reduce the guesswork and guilt families may experience during and after a loved one’s death. But the other part, he said, is helping people focus on life now by not having regrets, patching up relationships, and forgiving the people in their life.

“I think that inspiring people to live their best life possible, ultimately can lead to a good death,” he said. “A good death can simply be the byproduct of living a good and fulfilled life.”

In Heidbreder’s virtual Death Cafe, living through COVID-19 seemed to be what people wanted to talk about most of all.

One woman wanted to know how she should explain what was going on to her young daughter. Another shared how hard it was to drive her son across town to spend the weekend with his father. A woman getting ready to start nursing school shared that she had never felt more devoted or more concerned by the profession she had chosen.

Then people began to share what they hoped would come out of this moment: health care reform, work benefits, respect for personal health boundaries.

“I try to remind people when we start spiraling down ... to stay in the present and plan for the future,” said Lloyd of the Conversation Project. “So, have these conversations, take this time to be reflective, remember what holds you.”

Ultimately, Lloyd said we don’t know what the future will bring. So, the questions we need to be asking ourselves are these: “How do we want to live in this moment, and how do we want to be remembered about how we got through this time together?”