Dying alone: a pastor's reflections on mourning in isolation

In these pandemic days, families and friends all over the world are unable to sit at the bedside of their loved ones who are dying of COVID-19. They cannot see their faces or hold their hands. Traditional ways of caring for those who are dying are now impossible. Our rituals for mourning and remembering are now disrupted.

“The sad thing for suspected COVID-19 patients is that they have to die alone, catching their last breath alone.”

These are the words of a grieving daughter. Leonita Triwachyuni Agustina Sutrisna posted her thoughts on Instagram, under her handle @nonznonzon, after losing her father to COVID-19.

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Ga nyangka ini jadi pelukan terakhir. Ga nyangka juga pekerjaan aku dan papa yang butuh pengorbanan ini bener2 sampai mengambil nyawa dan memisahkan kami. #Timelessloveinframe ini aku isi dengan foto ini, karna aku tau besarnya cinta papa untuk aku. Buat temen2 pesennya cuma #BetterAtHome , Semoga pandemi COVID-19 ini segera berakhir dan Indonesia kembali sehat 🙏🏻 .. .. yuk @nchlsmrco @niaastarinas_ @christyprims ikutan giveaway dari @oppoindonesia dan @riomotret ❤️

A post shared by Leonita Triwachyuni A S, MD (@nonznonz) on Apr 13, 2020 at 7:51am PDT

Leonita Triwachyuni Agustina Sutrisna's tribute to her father after his death.

On March 26, 2020, The Jakarta Post, recounted her words and remembered her father for his work. He was a professor and an epidemiologist and a renowned lecturer at the School of Public Health at the University of Indonesia. His name was Bambang Sutrisna.

This grieving daughter’s loss is personal and intimate. There is also the added layer of the loss to her community, her country, and even the world in the death of a gifted professional in the very field so needed in these days. As Leonita articulates her pain and grief, I feel less alone in my own experience of complicated loss.

Coronavirus patients are dying alone in hospitals.

No one seems to be tracking how many patients have died with no visitors at their bedside, their families mourning in isolation, grieving alone. It is clear, however, that it is happening frequently and it is happening all over the world.

I came across this description by Dr. Steve Kassapidis, who practices in New York City, of what it is like for your patients to die alone:

“It's heartbreaking, especially when you have patients who die alone...I had a patient who I've known for 25 years. A sweet old gentleman….His family couldn't come and see him.”

I am struck by what he says about those who find out about their loved one's death after the fact:

“I've witnessed times when families call looking for their loved ones and unfortunately they passed away a day or two before and this family member didn't know. That's a hard call to take.”

To find out one we love has passed away without our even knowing is devastating. The delay in receiving the news creates another layer of grief; it can prompt a sense of helplessness, a feeling of anger at those who appeared to withhold information, and even needless guilt. “How can it be that he died and we did not even know?” or “Why did no one tell us that she passed away?”

“Because of hospital policy, we cannot allow visitors at this time.”

“This conversation sometimes takes place at the doors to the ICU, over the phone, or in front of the hospital, as families beg to see their loved ones before they die. A seemingly simple request, which in other times would be encouraged, has become an ethical and health care dilemma.
— Glenn K. Wakam, M.D., John R. Montgomery, M.D., Ben E. Biesterveld, M.D., and Craig S. Brown, M.D. “Not Dying Alone — Modern Compassionate Care in the Covid-19 Pandemic.” The New England Journal of Medicine, April 14, 2020.

In a matter of weeks, our expectations have been shattered in terms of what is allowed and regulated in caring for the sick. Extending compassion for those who suffer is a pillar of every faith tradition. The in-person expression of care for those who are ill is one of the concrete ways we manifest our beliefs. To be stopped at the door to the ICU or prohibited from even entering the hospital feels like an affront to our deeply held understanding of what it means to show love to one another.

What are the reasons for the prohibition against visitors, even as the time of death approaches?

“The problem is multifaceted. In many cases, family members have already spent time in close contact with the patient, which means they’re reasonably likely to be infected . . . Moreover, there is a shortage of personal protective equipment (PPE), and using some on family members means consuming more of a scarce resource. And if the family members are currently uninfected, a visit to a ward full of patients with Covid-19 risks infecting [more] people. . .”
— “Modern Compassionate Care in the Covid-19 Pandemic” (emphasis added)

The reasons we cannot visit are understandable and necessary, but that doesn’t make the experience less painful.

This virus is changing our norms around death and grief.

Significant events in human history have shifted our practices around grief and death. I remember learning that an outcome of the Civil War, when so many died far from home, was a change in the way families and communities grieved and remembered loved ones.

We’re finding ways to mourn in isolation

Today, new ways of expressing comfort, grief, and remembrance are unfolding right before our eyes.

A dear friend of mine drove seven hours to a funeral for her aunt in Tennessee. There were no more than ten in attendance. They made sure they broke no laws or regulations. They all wore masks in the funeral home and sat far apart. It broke her heart that she could not wrap her arms around her uncle as he wept.

In Andy Slavitt’s podcast In the Bubble, he recently reported attending a Zoom funeral. Hundreds of people attended the virtual service:

“...last night I attended a memorial on Zoom, the third funeral in the last month that I was unable to attend [in person]. The family went through the ceremony. Thirteen people were all that were allowed….they did say having hundreds and hundreds of people from across the country dialed in was incredibly meaningful.”

As a pastor, I could have never imagined a time when we would conduct funerals over Zoom. Yet, this family found it meaningful for so many to tune in. We are all learning, adapting, and finding news ways to offer solace and connect.

How can we prevent loved ones from dying alone?

Heroic Efforts to Save Lives

Dr. Bambang Sutrisna risked his life out of concern and compassion for others. His daughter is now urging people to stay home if they are well and if they are sick to take the advice of medical professionals.

As we consider the reopening plan phases of our home states and in our country, may we have compassion for one another and remember that we each have the responsibility to prevent others from getting sick.

Heroic Efforts To Be Kind

And in hospitals everywhere, “creative workarounds” are being offered by inventive staff.

The previously cited article in the New England Journal of Medicine describes some of them:

“. . . nurses may hold the bedside phone up to the patient’s ear or bring their personal smartphone into the room and hold it up while using Skype, WhatsApp, or FaceTime.”

Other efforts are underway to connect patients with their loved ones in their final hours. A non-profit is gathering laptops and other devices so families can stay in touch. Healthcare workers are doing what they can in the midst of the extraordinary demands placed on them. A nurse took the time to sit with a dying man, read out loud the names of his family members, and pray with him.

These workarounds, of course, have limits, even when technology cooperates:

“. . . many nurses, owing to concern about HIPAA privacy rules, a heavy workload, or poor connectivity can’t offer such communication with family. And even if a call does take place, families may be left feeling like they didn’t get to say goodbye properly — and we are left feeling like there must be a better way.”
— “Modern Compassionate Care in the Covid-19 Pandemic”

Despite their call for a better way, the doctors authoring the article are ultimately hopeful that these challenges can be addressed. “There may be no way for families to hold patients’ hands or hug them while they’re dying, but with the care and compassion of frontline health care workers, maybe we can harness creative solutions to help them feel some connection, while still keeping everyone safe.”

How can we support families whose loved ones die alone?

One way to support families whose loved ones have died alone is to lift up the life of their loved one and to tell the stories of those whose lives have been lost.

Many efforts are currently underway to gather information about those who have died.

In an effort to remember those in Kentucky and Southern Indiana who have died of COVID-19, a local news media outlet sends out a request for families and friends to submit stories of the deceased
The Guardian memorializes healthcare workers in the United Kingdom
Chicago Tribune is working to chronicle those in the Chicago area who have lost their lives

How can we cope if our loved ones die alone?

I am grateful that as my parents’ deaths approached, they were surrounded by their children, sons and daughters-in-law, grandchildren, and even a fluffy rescue dog. Our mother passed away; then, seven months later, our father, tended by the love and care of family.

This was not so for my oldest sibling. She died alone. We found out four months later. Her body had been found on December 15, 1982, the date of death unknown. She was 29 years old.

When she was found in her room in San Francisco, her body was first taken to the medical examiner’s office. After an inconclusive autopsy, she was cremated, then stored along with others, some unnamed, all unclaimed, all destined to be scattered at sea after a year in storage.

We were able to find and claim her ashes before a year had passed.

My heart breaks for those whose loved ones die alone. My heart goes out to those who find out after the fact that their loved one has passed away. My heart aches for those whose bodies lie in mass graves for unclaimed souls and impoverished families with no funds for burial elsewhere. My heart expands in gratitude for all those who are finding ways to care in the midst of chaotic circumstances.

Like Leonita, I am finding purpose in honoring my loved one as I tell the story of Martine’s life so that you may know her. As I write, I am searching for ways her death might have been prevented. Like Leonita, I’m sharing my loss with you and urging compassion so that unnecessary death can be prevented and families like ours will not experience needless grief.

I could not tend to Martine in her death. I am now tending to her life, preparing to tell her story to the world, and as I write Martine: A Memoir, our message becomes clear: “Compassion is a matter of life and death.”

In the midst of this global pandemic, compassion will truly save lives.

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