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Dying—and Grieving—During a Pandemic

May 7, 2020

Every day, people contact us to share their personal experiences with death and dying. In recent weeks, a growing number of these stories and inquiries concern something new: the reality of supporting the dying and honoring the dead in the COVID-19 era.

Strict quarantine orders and prohibitions on visitors at hospitals and nursing homes have left many feeling anxious and helpless. We’ve heard from people who, due to age, an underlying condition, or both, are fearful of contracting the virus and dying alone in the ICU.

Family and friends are unable to provide comfort for patients at bedside in their final moments. They are struggling to understand how to communicate with and support those who are dying—and each other—while keeping their distance. So many of the ways we grieve and celebrate someone who has died—gathering at homes or places of worship, embracing loved ones, breaking bread—are off-limits and unsafe in our new reality.

People around the world are grappling with what it means to die and mourn in the midst of a pandemic. We reached out to individuals who specialize in end-of-life care and death and dying and asked them to share their perspectives on the practical, emotional, and philosophical issues that characterize dying and grieving today.

Let us introduce the experts:

 

Sarah ChavezSarah Chavez is the executive director of The Order of the Good Death, co-host of the Death in the Afternoon podcast, and a founding member of the Collective For Radical Death Studies.

As one of the founders of the Death Positive movement, she is passionate about addressing the underlying issues that adversely affect marginalized communities’ experiences of death. Sarah writes and speaks about a variety of subjects including the relationship between food and death, Mexican-American death history, feminist death, and decolonizing death rituals.

* Sarah’s contribution is excerpted and edited for clarity from the article “Funerals & dying in Absentia: Inspiration & Tips During COVID-19,” and is reprinted here with permission.

 

Ann NeumannAnn Neumann is the author of The Good Death: An Exploration of Dying in America and a contributing nonfiction editor at Guernica magazine. She has written for Harper’s Magazine, The New York Times, Virginia Quarterly Review, The Baffler, The Guardian, Vox Media, and elsewhere. Neumann is the former editor in chief of The Revealer, a publication of The Center for Religion and Media at New York University, where she was a visiting scholar from 2014 to 2018. Neumann is currently working on a book about grief and travel.

* Ann sent us her responses by email.

 

Donna SchuurmanDonna Schuurman, EdD., FT is the Senior Director of Advocacy and Training at The Dougy Center for Grieving Children & Families in Portland, Oregon, where she has served in various roles since 1986, including 25 years as Executive Director. She writes and trains internationally on bereavement issues, and has authored numerous articles, book chapters, and the book Never the Same: Coming to Terms with the Death of a Parent.

Dr. Schuurman served as President of the Board of Directors for the Association for Death Education & Counseling. She is a member of the International Work Group on Death, Dying, and Bereavement, and a founding board member of The National Alliance for Grieving Children. She has trained the National Transportation Safety Board (NTSB) and FBI’s Rapid Deployment teams, as well as medical personnel, NGO staff and caregivers following major natural and manmade disasters. She serves as a national trainer for the American Foundation for Suicide Prevention (AFSP), and is a member of the Board of Directors of The Compassionate Friends.

* Donna’s answers, edited for clarity, are from an interview we conducted on April 28, 2020.

 

Josh SlocumJosh Slocum is the executive director of the South Burlington, Vermont-based Funeral Consumers Alliance. He has appeared as an expert commentator on funeral issues in national media such as 60 Minutes and the New York Times. Slocum co-wrote, with Lisa Carlson, Final Rights: Reclaiming the American Way of Death, which combines a journalistic investigation of the funeral industry and how consumers navigate it with practical information on how to avoid funeral fraud and financial exploitation.

Slocum contributed the entry on the history of funeral-consumer advocacy for Watchdogs and Whistleblowers: A reference guide to Consumer Activism. The paper titled: “The Funeral Rule: where it came from, what it does, and how to bring it into the digital age” will be published in the forthcoming edition of the Wake Forest University Law School’s Journal of Public Policy.

* Josh’s contribution is excerpted and edited for clarity from the article “Funerals postponed,” and is reprinted here with permission.

 


 

What does it mean to die alone?

Ann Neumann: The philosophers may say we all die alone, each one of us exiting the world as we came in. But the truth, particularly in this time of crisis and global disease, is that we are highly social creatures, deeply in need of one another. The notion of a good death is still anchored by the image of a deathbed encircled by loved ones. Yet, the diabolical nature of the pandemic is that it has made these mortal gatherings unsafe.

Hospice programs are still serving non-COVID patients across the country in hospitals, nursing homes, and private homes. Many of these programs are taking in COVID patients as well, hospice care workers providing what comforts they always have to patents, albeit through gloves, masks, and gowns.

But the truth is that hospice is largely underutilized in normal times—enrollment in hospice often comes too late in a patient’s life and the stay is far too short to provide as much comfort as it could. Now, the nature of the disease is preventing the broad use of hospice for those dying of coronavirus. Most deaths are occurring in hospital ICUs.

We’ve also seen an uncommonly high number of home deaths in New York and elsewhere during the current (first?) peak of the disease, perhaps because of the fear many have of overwhelmed or dangerous hospitals. Also, the (shamefully negligent) lack of testing and the course of the disease allow the disease to overtake some at home. Front line workers in the city have offered some insights over the past few weeks:

Several New York City funeral directors tell me that there is a difference in the disposition of a family when their loved one has died at home without hospice—confirmation of what we’ve long known: proper pain relief, the knowledge that death is imminent, and the company of others can make death peaceful.

One palliative care doctor has told me that COVID patients who do not want to be hospitalized can use home medications like Tylenol to keep fever at bay, a fan on the face to alleviate breathing challenges, and Benadryl to bring pain relief and unconsciousness. But these are emergency home remedies that provide only limited comfort and relief.

One hospice nurse told me that families should be comforted to know that those patients in her care were not dying alone; nurses are still providing physical comfort and helping dying patients to communicate with remote family members whenever possible. A hospice chaplain has affirmed this: comfort may be buffered by a face mask and gloves, but whenever possible, careworkers are comforting the dying wherever they are—in ICUs, their home or a nursing home.

 


 

What are creative ways to tend to our sick and dying when having to distance?

Donna Schuurman: My 91-year-old mother is in assisted living in Baltimore. She isn’t dying but she’s confused about what’s happening, why everybody has masks on, and I can’t go see her and hold her hand.

That we can’t gather with our loved ones is huge. We can typically visit a loved one in the hospital, whether they’re dying or are unconscious, and knowing we cannot do that adds another level of complexity. We can’t do our rituals, hug, cry, in person, we have to do that virtually, if we can do them at all.

Whenever possible, try to have video contact with the person, whether they’re conscious or not, play music to them on the phone, even listen to their breathing. Maintain contact as much as possible. Use all the Zoom capabilities of gathering together, sharing photos or videos, and, after the person dies, putting them together in an online memorial, whether through Facebook or other platforms.

Lastly, something we ought to be doing anyway: writing letters and sharing photos through the mail.

 

Ann Neumann: The seemingly out-of-fashion phone call has come back to reconnect us to our friends and families. The basic nature of telephones, versus the more involved challenges of texting and video, are helping nursing home residents, hospital patients, and home hospice patients stay in touch with their loved ones. Hospice professionals have long said that hearing is the last sense to leave a dying patient; the voice of a loved one, even when the patient is unconscious, can greatly comfort all involved.A hospice chaplain in Denver has told me about local groups sending postcards to nursing home residents. I love this idea, particularly when objects from others are as close as we can get to their physical presence.

One adult daughter in California told me that she bakes her step-father’s favorite cookies and leaves them on the back stoop of the facility where he lives. Another said the staff regularly get her and her mother together on FaceTime.

The window visits we’ve seen across the media are a great thing for families as well, if facilities still allow them.

Telephone calls are helpful, even if the resident or hospital patient is disoriented or unconscious—they can be facilitated by staff, nurses, or social workers. Try to work with a caretaker inside the facility to keep your voice in your loved one’s ear; doing so will help you both to feel less alone.

 

Sarah Chavez: Our physical presence may be restricted for now, but our imagination and the love we hold for each other is limitless. [For example:]

  • Schedule a communal meal on a video platform like Zoom. You can use a recipe of theirs or create a menu based on their favorite foods. You can even get together virtually and have everyone cook the meal or dish “together.” Maybe Grandma is stuck in the hospital and you want to learn how to make one of her signature dishes? Have her coach you through FaceTime! You could also consider leaving a place setting out for your person, or “share” a meal with them on designated days of the week or month.
  • Send them meals or care packages. Quite a few restaurants are offering delivery and grocery items like produce, eggs, flour, and this season’s most coveted item, toilet paper! You can also send a gift card for delivery services like Postmates.

 


 

David Kessler, co-author of On Grief and Grieving, told CNN, “We’ve always been able to be with [our loved ones’] bodies, to gather for a funeral. All that is gone. So we’re not only robbed of our loved one, but we’re also robbed of our ability to gather to honor them. On a national level, this is really unprecedented.”
How do you grieve the death of someone who died alone?

 

Donna Schuurman: The issue is for families thinking about the person dying alone, the idea that not only I’m grieving my father who died in hospital alone, whatever he died of, but that he was there without any support from us. Thinking about what that was like for him adds another level of complexity to grieving.

I’m not a fan of delayed grief, because people are grieving now. It makes it harder to have a punctuation of events, this happened and we gather to acknowledge it. It doesn’t feel like we’re honoring the person who died and we feel like they were cheated out of the support of people around them and we feel cheated out of supporting them.

Nowadays when people ask “how are you doing?”, they’re asking about us under the current restrictions, not about “how are you doing now that your father just died?”

The term “grief” has been thrown around a lot. I’m sorry you can’t go to the bar you go to every Friday night but it’s not the same as a family grieving their father who died while they couldn’t be there. Grief has been trivialized and real grief, for someone who died, marginalized. When everyone is grieving something, your specific loss becomes minimized.

 

Ann Neumann: New York funeral director Amy Cunningham has told me that she advises families to think more broadly about how they will mark their grief. A celebration of life need not be one event but can span the course of a year. Conversations with the family rabbi, pastor, or priest can help the memorialization and grieving process.She also suggests that families devise their own rituals at home to help mark their loss. Candles, writing letters to the deceased, planting flowers or a tree can help those grieving to feel that the ceremony has not been averted but simply adjusted to safely meet the moment.

 


 

Though for some, virtual memorial services have proven more than adequate, as a group of far-flung friends and family discovered, a Zoom wake can be just as—or even more—intimate and inclusive than an in-person ceremony.
What are the best tools (online or otherwise) that enable people to connect and mourn/celebrate the dead when they can’t gather in person?

Sarah Chavez: You can carry over many of the same elements from a traditional funeral into a virtual funeral too, such as memorial videos, music playlists (be careful of using licensed music on Facebook and YouTube), create a program with eulogies, prayers, or a chance for mourners to share their own memories.

You probably already have a wealth of ideas from your online relationships and communities, that can be modified. Here are some of mine:

  • Create a virtual altar where people can leave messages, songs, photos of food offerings, videos of family and friends singing a song, reciting a prayer or poem, photos of flowers, or artwork. Creating a virtual space like this can be a source of comfort for years to come.
  • Share and collect stories and photos of your loved one. If the virtual altar idea isn’t for you, you may want to consider something more private to share stories and photos. You can create a private Facebook Group and send invitations or a link to only selected people. Think funeral program or memorial booklet, but make it virtual and ongoing.
  • Make a playlist that people can contribute songs to. Be sure to provide some guidelines and ask that contributors include some background information about their song choice as they often come with special stories or memories.
  • Host a watch, game, or listening party. You can watch their favorite movie, or a concert by their favorite artist together. You can do the same with certain games, or use Zoom, or Instagram to have dance or music listening get togethers.
  • Schedule regular meetups, create the space and fill it as best suits your needs, even if it’s just to check in with each other. As an alternative you can also agree on a specific time of day for people to stop whatever they are doing offline to light a candle, read a special verse, pray, or just to think of the immediate family.

 

Josh Slocum: It is important to keep a sense of perspective, especially when the emotions of a death in the family take hold. This doesn’t mean we can’t grieve. It doesn’t mean we can’t honor the memory of someone we loved. It doesn’t mean that we can’t connect and commune with our families and friends. Yes, it does mean we aren’t going to have the solace of that in-person hug, and the meal afterward, and that’s the hardest part. But here are some things we can do. Some of these are activities that have already become common or even traditional in some areas:

  • Remember that the physical disposition of the body doesn’t control how we grieve and mend our wounds. Choosing simple services without in-person gatherings and ceremonies, such as direct cremation and immediate burial, will get the body where it needs to go.
  • There are many free online services that let us see and hear each other in real time over video. Zoom, FaceTime, or whatever application you ordinarily use can put you in the same virtual room with the people who would ordinarily show up to hug you at the funeral.
  • Adapt a practice familiar to New England families, who often do “spring burial.” The frozen ground is too hard to dig in winter; most of our cemeteries hold the caskets in hillside crypts until spring. It’s common for families to gather in spring for a graveside service even though death occurred months earlier. What about scheduling a memorial service for three months in the future? Funeral homes would certainly be glad to have that business, or you can do so through your church, at your fraternal or social organization, or in a family home.
  • Make some hands-on, family-created memories of the person who died. Children and adults can write an “obituary”, or a reflection on what grandpa meant to them. Make something that honors grandma. It’s therapy right in the here and now, and it will become a family heirloom with meaning that can’t be bought. These family pieces can be gathered together for that later memorial service, too.

 

Ann Neumann: Family members can share photos, stories, home movies, and other ephemera from their loved one’s life through the mail or online platforms. Regular, solitary visits to graves are often still possible in most parts of the country. And technology has proven to be somewhat effective in gathering family members and friends in one virtual place.

The legacy methods of marking death—viewings in funeral homes and graveside memorials—are, for the time being, not possible. But families should take comfort in the fact that the pandemic will not last forever. They may find comfort in other ways of marking their loved one’s passing now and plan for in-person events or ceremonies at a later time.

 

Donna Schuurman: Everybody’s kind of fumbling around. Some funeral homes are better equipped than others—if they’ve had experience with virtual services—so people who weren’t physically present could still participate. And then there’s different restrictions about attending funerals, going to cemeteries, and we’re all fumbling our way through it, navigating it at the same time. The full impact on people will become clear later.I will say that when it is possible for people to be together again and we don’t have to physically distance, it’s never too late to have a service. What form that takes depends on the person’s background, but it’s never too late to gather and honor the person who died, whether it’s a month or a year or two years later.

 


 

We Want to Hear From You

Each of us experiences this time in our own way. We want to hear from you: Has COVID-19 impacted how you think about death and dying? What conversations are you having with friends and family about these topics (or are you trying to avoid coronavirus talk at all costs)? Did this article spark any questions or insights for you? We’re here to listen. Please send us a message.

We look forward to hearing from you. In the meantime, we hope you are able to stay safe at home.

 


 

5 Comments.

Patty Cyr
May 7, 2020 at 9:53 am

Thank you for sharing this information. My dear elderly friend passed away when the Coronovirus restrictions first began in my county. (She did not die from the virus nor did she have it, per my knowledge;.) Only ten people were allowed at the service, so the family was able to choose 3 of her friends to attend the funeral church service. I was one of the lucky ones chosen to attend. Although it was a quaint beautiful ceremony, I couldn’t help but think of the numerous people she had known from the church over several decades that could not attend, Some who had computers were able to view the service online, but we all know that is not the same as being there in person. It was also difficult because I think most people wanted to hug each other and stand closer after the service,, but that obviously was not allowed. I can’t imagine how difficult that must of been for her family. Phone calls, cards, Skype, or whatever means of contact you can offer given restrictions is so important for the family and others who were very close to her. I was happy that the nurse by her side while she was in Hospice care allowed me to say some last words to her via the phone. I don’t know if she heard me, but I like to think she did. These certainly are difficult times. Thanks again for bringing up the hardships people face in such situations and also how to help deal with them.

Allen Samuels
May 8, 2020 at 6:36 am

As a product designer, I have considered the situation where an individual is dying , they are in a hospital in quarantine and family and friends cannot visit in person to say goodby and I love you. I am proposing a mobile , electronic wall or display that can be rolled into the patient’s room. The display presents full scale images in real time of family and friends communicating what they wish to say at this most challenging time. In addition to the full color, full scale visual imagery, there is a circular void in the wall where the patient can reach in and feel a haptic hand. That is, a hand like shape that is warm and grasping and guided by a family member. The combination of the full scale, real time images of family and the virtual hand holding is intended to provide as close to a real and meaningful last conversation that can be delivered remotely. Never as good as an onsite, in person goodby-I love you, but hopefully, still meaningful and sincere to all involved. Still only a concept, I am seeking a collaboration that could produce an actual prototype.

Michele
May 8, 2020 at 6:46 am

I also lost a close friend shortly after the restrictions first began. She, like your friend, did not die of Covid-19. I was not able to see her but the nurses held the phone to her ear so hopefully she could hear me. The nurses assured me someone would be with her and comfort her during her death. They were very kind. The family chose not to have any service at all and this has had a bad effect on her friends. It’s as if she is forgotten. I think we will plan a celebration of her life when we can gather again. It feels strange and unsettling not to acknowledge her passing and her life. These are strange times.

Christine Stelmack
May 11, 2020 at 5:29 pm

So here is the thing….even BEFORE all of this….why are we so hell bent on keeping people alive that are beyond there years and span. I DON’T want to see my Mother licking waste from her hand because she thinks its DIRT. I don’t want to tell my Father who saw friends blown up in Korea…relinquish your control.

Erin
May 26, 2020 at 8:02 pm

My five year old is dying from DIPG, an inoperable brainstem tumor. We are very close to the end of his life and the prospect of not being able to honor him in a traditional way is devastating. DIPG is a horrific diagnosis because there is no cure and you are simply told to go home and make memories. Right from the start, we were wrapped up in so much love and support from our community. I am so sad that they will not really be able to be participate in any kind of funeral service gathering with us. In fact, if we chose to use our local funeral home’s chapel, my husband and I would have to sit six feet apart and never hug. I can’t wrap my head around it.

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