Month: June 2020

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A Death Doula’s Guide To Grieving In The Pandemic

By Molly Longman

Amy Wright Glenn’s outgoing voicemail message reminds me of a guided meditation app. “Before you leave your message, inhale [long pause] and exhale [another pause]… Thank you so much,” she says in a soothing tone.

There’s a reason she’s so intentional about what callers hear when she can’t answer her phone. Many of the people trying to get in touch with Glenn are in crisis. As an end-of-life doula, she talks to people who are close to death, or who have loved ones who have recently passed away.

Not surprisingly, more and more people have been reaching out to the Florida resident during the coronavirus pandemic, which has taken 294,025 lives worldwide, more than 80,000 of which have occurred in the U.S.

Most people associate doulas with childbirth. Birth doulas are trained to provide emotional and physical support to a parent-to-be during labor. (They don’t deliver babies; that’s a midwife.) But the term “doula” can be used to describe someone who acts as an intermediary through any stage of life. There are sleep doulas, postpartum doulas, antepartum doulas. And, of course, there are death doulas.

Before coronavirus, end-of-life doulas were tasked with carrying out the wishes of people who knew they’d be passing on. If someone wanted a specific song playing as they died, or a certain person at their bedside, the doula would help arrange it. They might also work with the deceased’s family as they planned the funeral, says Henry Fersko-Weiss, the cofounder of the International End of Life Doula Association.

But during the pandemic, end-of-life doulas can’t do their jobs in the same way. Due to social distancing measures, they’re not allowed in hospitals, hospices, and senior living facilities. It may be difficult to provide their services virtually. Some sick people only have limited “phone time,” and they’re using that to call family members, not doulas, Fersko-Weiss says. Funeral services are being put on hold, or are heavily restricted.

Still, people are finding ways to reach out. Often, the people seeking support from end-of-life doulas right now are in immense pain. “The most difficult consultations I’ve had recently have to do with suicide, and the sorrow of those who’ve had family members or friends die by suicide,” Glenn says. “For some who already had mental health struggles, this pandemic was a tipping point… I‘ve cried about that.”

The Unique Pain Of Grieving During COVID-19

One of the reasons this pandemic has been so devastating is that people are dying alone. In Japan, they refer to this as “kodokushi,” which translates to “lonely death.” Many patients in hospitals, hospices, nursing homes, and other healthcare facilities are not being allowed visitors because COVID-19 is so contagious. Their last conversations with their loved ones may take place over FaceTime.

Bridging that distance is not easy, though end-of-life doulas are trying their best to help. Fersko-Weiss says that many doulas are encouraging their clients to write letters to family members. People who are close to death have a unique perspective, which makes the wisdom they impart especially impactful, he says. When possible, Glenn suggests terminally ill patients ask their doctors about going home, where they can be surrounded by loved ones as they pass. “Being with someone as they die is very powerful,” she says. “It’s one of those life-changing memories.”

The experience of grieving alongside so many others can pose a challenge as well. “I don’t think it helps people to know they’re not alone,” Fersko-Weiss says. “It may make you feel better, very briefly, to know there are other people who might be suffering more than you are. But your grief is your grief, and you can’t escape it. And you may feel it more deeply because of everything else we’re losing — on top of the death of a loved one, maybe you lost your job and can’t go back to work, and you also feel like you can’t ever get back to the way things were.”

On some level, that’s often true. “For any grief, whether it’s related to COVID or heart disease or cancer, we never go back to who we were before,” Glenn says. “The experience can deepen us; we can get through it and grow. But the fact that it will change us is irrevocable.”

How to grieve in a pandemic

When asked whether she has any suggestions for people who have lost loved ones recently, Glenn offers this advice: lean in. Open yourself fully to the pain of mourning.

“Grief doesn’t need to be fixed,” she says. Glenn discourages the people she counsels from thinking of grief as an illness that needs to be cured. Instead, it’s more like a scar: It will change and fade, but it will likely be with you forever. The goal is not to erase it, but to grow accustomed to it and find ways to live with it. “Grief is woven into our world,” she says. “The work of grief is to mourn, to express, to share our stories, feelings, and find our way to our own meaning of what love, life, and loss are.”

Kinship is essential, Glenn adds. She says during the initial mourning period, people need to express their internal sense of loss.

But funerals, traditionally a time that friends and families could gather to grieve together, are being canceled and postponed due to social distancing restrictions. This can compound the burden of grief.

“There have been four deaths in my family where we never had a funeral,” says Caroline Caruso, who first learned about death doulas from a friend. She was inspired by her experiences during the pandemic to train as one herself. “The ritual of the funeral is getting robbed from the family, and it’s devastating to the collective,” she notes.

Right now, then, people must be more intentional about finding companionship. They can call or video-chat friends and family. Or get creative: “You could hold a vigil every day at 2 p.m. Use the time to sit in meditation or prayer or song, and ask friends and family to do the same — even if you’re not in the same physical space,” Glenn suggests. “It’s about knowing that your grief is being shared.” Fersko-Weiss also suggests working with a doula, a therapist, or a grief counselor virtually.

Your conversations with friends and loved ones can revolve around your grief and the departed, but they don’t have to. Reconnect to things that have traditionally made you feel good, whether that’s cooking, working out, or watching a funny movie with your best friends on Netflix Party.

You’ll have good and bad days. Over time, those painful, confusing, overwhelming early stages of grief will pass.

“Yes, my work involves holding space for sorrow, but it also involves holding space for hope and courage and resilience,” Glenn says. “When I listen to someone describe their mourning, it isn’t only sorrow I’m hearing about. It’s love. It’s an incredible honor to listen to someone express their love. And express their stories and hopes and fears. Grief is the window into the human soul.”

She adds: “Like birth and death, grief and love can’t exist without each other.”

Complete Article ↪HERE↩!

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If You’re Grieving Right Now, Here Are 5 Shows That Get It

It may sound odd to highlight fictional stories about grief at a time when so much of the real thing is around. But experts say there is catharsis in seeing someone struggle with familiar feelings. Above, Sterling K. Brown as Randall and Susan Kelechi Watson as Beth in NBC’s This Is Us.

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If there is one emotion that hangs over our world these days — other than fear and anger, perhaps — it is grief.

There’s the grief that comes from watching the death of George Floyd captured on a bystander’s video, pleading for his mother and his breath, while a police officer kneels with a knee on his neck.

There’s grief over what that moment said about police and the policing of black people, along with grief over the protests and violence in some American cities as people demand answers.

And there’s the grief of Coronavirus, as we mourn lives cut short, and shoulder the loss of jobs, business opportunities, weddings, vacations, graduations, senior proms …

In this difficult time, television shows have emerged as a surprising resource, with important examples of how people process grief and handle journeys of loss. An increasing number of fictional dramas and comedy series center on characters struggling with grief in raw and emotional ways, which some experts say can actually help all of us learn how to process those feelings better.

“I do think there’s a lot of power in the media starting to embrace grief as a conversation,” says Joanne Weingarten, the Senior Clinical Coordinator of adult programs at the Our House Grief Support Center in Los Angeles. “The thing I find really powerful about these shows, is that they don’t solve grief in one episode. When you live in a culture that says after three days when someone you love dies, you should be back in the workforce, that can be really confusing.”

Some have used the term “traumedies” to describe comedies about pain and loss. But there’s a wide range of shows mining the subject, featuring grief and grieving characters centrally.

In a way, it’s counterintuitive to typical TV development, which focuses on likable characters viewers want inside their homes — grieving characters can be unlikable and difficult to watch.

Holly Daniels, a former actress (House and Castle), now has a doctorate in psychology and serves as Managing Director of Clinical Affairs for the California Association of Marriage and Family Therapists in Los Angeles. She says TV shows that treat grief as a momentary state often miss the mark, feeding into a culture that tells viewers major life problems can have simple solutions rooted in consumerism, like purchasing the right car or the right house.

“Being in the rat race of our consumer culture, [the lockdowns sparked by the pandemic] forced us to kind of take a step back and figure out what is meaningful to us,” Daniels says. “Consumer culture disengages us. … We almost needed something this global to make us step back from that and look at our lives. … That’s what I see in these shows.”

It may sound odd to highlight fictional stories about grief at a time when so much of the real thing is around. But experts say there is also a catharsis in watching someone struggle with feelings you are having — it’s also one of the most powerful dynamics that binds us to television — and there is a lot about grief and grieving that today’s TV shows get right.

Here’s my list of the best TV shows that depict grief these days, along with a little analysis from the experts.

I Know This Much Is True (HBO)

In this miniseries, based on a Wally Lamb novel, Mark Ruffalo gives anguished, emotional performances as two people; twin brothers, Dominick and Thomas. Though the first episode features Thomas committing a horrific act while struggling with mental illness, it is Dominick we see constantly suffering from grief – pushing away friends and family members after the loss of his mother, his baby, his marriage and more.

At times, Dominick seems the brother most in need of help, as his twin’s commitment to an institution sends him into a spiral of anger, self-loathing, guilt and anxiety that lasts years. In the miniseries, Dominick’s ex-wife, girlfriend, best friend and stepfather all step back in the wake of his blistering anger; for viewers, it makes watching the middle episodes of the miniseries a challenge as we plunge deeper into his dark world.

Experts say: “Grief is really messy; it can be a lot of tangled emotions, positive and negative, over many months or many years,” says Dr. Shoshana Ungerleider, a physician who also was an executive producer of End Game, a Netflix documentary short about end of life issues. “Anxiety is the missing stage of grief that nobody talks about, but so many people are feeling right now. Giving ourselves permission to feel that can be really therapeutic.”

After Life (Netflix)

Ricky Gervais plays a more depressed and suicidal version of himself as Tony Johnson, features editor for a small community newspaper, who is drowning in grief after his beloved wife dies of breast cancer. At first, he plans to kill himself, then copes by doing whatever he wants — often lobbing insults at those around him, as only Gervais can — as a way of punishing the world. But when others try to help him, his attitude changes.

Experts say: “This show does a really good job of not sugarcoating his grief,” says Weingarten of the Our House Center. “It shows that he is angry, sad, and at moments wants to end his life. But, slowly, he tries to put one foot in front of the other, [though] there are setbacks.”

Dead to Me (Netflix)

In one of the oddest buddy comedies on TV, Christina Applegate plays Jen Harding, a realtor struggling to handle grief after her husband is killed by a hit-and-run driver. Her life improves when she meets Judy Hale, played by Linda Cardellini, another widow at a grief support group who becomes a fast and close friend. But (spoiler alert!) when Jen learns that Judy isn’t exactly who she says she is, their relationship changes. In the second season, which debuted recently, Jen is still struggling to control her anger as their roles switch and she is forced to hide a terrible secret from Judy.

Experts say: “You want to make sure you’re not putting pressure on yourself in the early stages of grief to see silver linings or find meaning or do work to make yourself a better person,” says Daniels, noting the pressure on Applegate’s character to improve during support group meetings. “If you’re in the angry phase or you’re in the ‘Everybody leave me alone, I need some space’ phase, that’s OK, too. Just by showing us how these characters are feeling and letting us see that, without someone jumping in to fix it right away, is a huge help to a lot of people. … It really can be a comfort.”

This Is Us (NBC)

NBC’s super-successful family drama centers on three grown siblings — two biological and one adopted — born on the same day. But the show depicts them at different times in their lives — as tweens, teens and adults — slowly revealing that much of the series’ storylines are centered on how the siblings have been affected across the breadth of their lives by the death of their father.

Experts say: “That’s a show people at the [Our House Grief] Center talk about a lot … [because] we grieve not just for the current moment, we grieve for the future we planned with the person who died,” says Weingarten. “Every time there’s an event that you expected that person to [attend], there will be some grief involved.”

Sorry For Your Loss (Facebook Watch)

This under-the-radar series is probably the best original show Facebook has produced yet for its Watch platform. Avengers franchise star Elizabeth Olsen plays Leigh Shaw, a young widow who left her job writing an advice column to move in with her mother and sister after her husband dies. As a widow, Leigh feels the most entitled to show her grief, but the series reveals that everyone in her family is struggling with the loss of her husband in different ways, including her husband’s brother.

Experts say: “When someone in our life dies … everyone else [in our life] is grieving the same person, but they have a different relationship with that person,” says Weingarten. “Even though we’re grieving the same individual, what we’re missing about that person might be radically different. So engaging in conversations with others and talking about what you miss about that person can be really powerful, because we can learn about the people we loved after they are gone.”

There are many more great TV shows centered on this subject, from HBO’s Six Feet Under and ABC’s A Million Little Things to Amazon’s Undone and Netflix’s Never Have I Ever. Even classic good guys like Harry Potter, Batman and Superman were forged into heroes by the crucible of grief, rebounding from the deaths of their parents to become forces for justice.

Daniels says such fictional work can provide lasting lessons, as trauma from the pandemic and world events remains with us all, even after the immediate crisis ends.

“We’re always going to carry this time with us,” she says. “But maybe struggling together can bring us closer to each other. Maybe we’ll find more connection. And TV shows which [depict] that arc of healing and reconnection … that’s a really important storyline for people to see.”

Complete Article ↪HERE↩!

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The Pandemic Broke End-of-Life Care

In a Boston ICU, staff members orchestrate goodbyes over Zoom and comfort patients who would otherwise die alone.

by Sarah Zhang

When the coronavirus came to Boston, doctors at Brigham and Women’s Hospital noticed how silent certain floors became. Any patients who could be discharged were discharged. Anyone who could stay away stayed away. “The hospital had this eerie quiet,” says Jane deLima Thomas, the director of palliative care at Brigham and Women’s Hospital and Dana-Farber Cancer Institute. But in the intensive-care units set up for COVID-19, machines beeped and whirred in room after room of the sickest patients. Those patients were sedated, intubated, and isolated. Many of them would die.

Palliative care is about providing comfort—physical and emotional—to patients who are seriously ill, including those who may be close to death. Before the pandemic, deLima Thomas’s team worked with patients with kidney disease or cancer or heart failure, but this spring, they all switched to COVID-19. They embedded themselves in the ICUs. Palliative care is a field especially invested in the power of a hug, a steadying hand, and a smile. In other words, palliative care is made especially difficult by a virus that spreads through human contact.

The first day the palliative-care doctors walked into the ICUs, Thomas says, “we felt like tourists.” They were dressed in business casual, while their ICU colleagues raced around in scrubs and masks. But the palliative-care team—which includes physicians, nurses, chaplains, and social workers—found ways to integrate themselves. In the early days of the pandemic, when protective gear was scarce, no visitors were allowed. Palliative caregivers, along with ICU nurses, held iPads cocooned in plastic bags so families could say goodbye on Zoom. They were sometimes the only one in the room when a patient died, otherwise alone. I interviewed several members of the Boston-based palliative-care team, and their stories, which have been condensed and edited for clarity, are below.

Samantha Gelfand, Fellow

In the ICU, the most immediate thing is the personal experience of walking down the hall. Nearly every patient’s room, the door is closed, and the patient is alone. And they’re often on their bellies for prone positioning. You can’t even see their faces often.

Seeing anyone who is critically ill with a breathing tube, lots of monitors and beeping, it’s not easy. When we facilitate Zoom calls with family, I say, “Listen, it may be alarming to see that your loved one has tubes and tape and monitors on their head.” They may have soft wrist guards on their arms to stop them from trying to take out their own tubes.

It doesn’t always work. I did a Zoom call with seven family members. The patient was a man in his 50s and he had seven kids, and they ranged from 18 to late 20s. I told the siblings what I could to prepare them, and still I’m holding the iPad and they start wailing. There’s a visceral experience of just devastation.

As someone’s who lost my own parent, I think wailing is appropriate. I let them. I actually think holding the silence and bearing witness is the right thing to do first. It’s very uncomfortable to watch, but I think it’s misguided to try to hush or try to shorten it. How do you comfort someone on Zoom? It sucks.

Our department has a reflection conference on Tuesday mornings. In COVID-19 times, we’re still doing this, but now we’re doing it by Zoom. One clinician will read the names of patients who died last week in our care. It’s very, very eerie to hear the list of names and have worked with probably half of them and not have seen their faces.

Usually when we sit in that room and we remember the dead, we are remembering what it felt like to talk to them, what they looked like. And this, it’s like we’re remembering what it felt like to think about the patient or what their family members’ voices sound like. I really missed the times when I could think of a face the patient made or a comment that they said. It feels like a new way of grieving.

Ricky Leiter, Attending Physician

COVID-19 doesn’t just affect individuals. It’s affecting families. I’ve had a couple cases where a married couple is in the ICU, next to each other. I was talking to a daughter whose parents were both intubated in the ICU. They were in their 70s to late 80s. Her father wasn’t doing well, and we were asking, “Should we try to resuscitate?”

I remember her saying, “I can’t think about the hard stuff right now. This is all too much right now. I can’t do that.” And of course she couldn’t. How could she? Her parents were relatively healthy before they came in. It was the suddenness of all this. In my normal palliative-care practice, those are patients who have been sick for a while. They have been diagnosed with a serious and life-limiting illness. A lot of COVID-19 patients are otherwise pretty healthy; maybe they have high blood pressure. This is an entirely new universe.

One of our fellows did five or six tough conversations like this with families in one day. I had a day like that early on. Our team walked back to our office, and everyone there asked what happened to us. We were so shell-shocked, and it felt like we were having the same conversations over and over. I don’t normally have six conversations where it’s the same disease, the same coronavirus.

Reverend John Kearns, Chaplain

My brother died 30 years ago this September. It was a life-changing experience and really oriented me into the life of loss and grief. He died of AIDS, which seems so similar now with the fears surrounding an illness that wasn’t well understood. People then were afraid to touch him or hug him. My parents were very dedicated to his care. He died at home in our bedroom that we shared as brothers.

It’s natural for people to take care of their loved one when someone’s sick. Being present for someone is part of what helps people get through it. They’re participating in some way. During this, the families have none of that participating. The first few weeks of COVID-19, we didn’t go inside the patients’ rooms. Now that we have more protective gear, they’ll let us go in, and the department has developed an iPad ministry to connect patients with family who can’t be at the bedside. Sometimes the family will email photographs and we’ll print them out and hang them in the room—photographs of the patients’ kids, wife, spouse, partner. Whether these sedated patients can see or hear is questionable, but the family gets to see, or the family gets to speak to them.

I’ve spent as much as two hours in a patient’s room. I’ve gently wiped the forehead of a patient. I’ve led prayers with the family over the patient. And they will ask us to hold their loved one’s hand. Often there’s a hope to see there’s a response, whether it’s a simple squeeze of a hand, a blink, the movement of the head—anything that gives them hope that their loved one is going to make it.

When the family wants to be seen by the patient, then you have to do the reverse camera and then hold it in such a way that they can see the patient’s face. You’re trying to orchestrate this intimate moment and sacred moment, and you’re fumbling with this iPad. Where is the camera lens on these things? And at first, we were putting these iPads in plastic bags, like a Ziploc bag, to keep it from getting germs on it. So now it’s sliding around in this bag that’s a little too big. You also have the problem of fogging up your glasses and fogging up the shield. At times, it is hard to see the face of the person or to read something or to manipulate the iPad.

There was a Muslim patient who was dying. We have a couple imams. One is actually out of the country; he has not been able to get home since COVID-19 started. The other imam wasn’t available. When the patient took a bad turn, I got called in by Ricky Leiter. As an interfaith chaplain, we also visit everyone. I had an iPad with 20 or so family members who were all over the globe. They were reciting prayers. At one point it reminded me of church bells. All those voices all over the world, coming together at the same time.

Stephanie Brook Kiser, Fellow

I’ve had family members say to me, Just please go in person and tell them in person that I love them and promise me that they won’t die alone, that you’ll be there at the bedside.

A patient I took care had been sick with COVID-19 and in the hospital for two or three weeks. He was 80 years old. His wife was just a few years younger. They had been together since they were teenagers. You can just tell in her voice that it was so hard for her to be apart from him. She said, “I can’t remember a time I’ve been apart from him for this long. I think this might be the first time since I’ve known him.” At the same time, she was living in fear in her home because she knew she had been exposed to him. Because of her age and other medical problems, she was at high risk to be at the same place he was: really sick in the ICU, with a breathing tube, not getting better at two weeks or three weeks.

It was pretty clear medically, no matter what we were doing, he was continuing to get worse and worse and worse. We had a really difficult conversation over the phone about what his wishes would be, and it was clear to her and to their children that the biggest thing we could do was transition to focus on his comfort. We knew what that would mean is he would die pretty quickly.< With the hospitals’ changing policy, if someone is actively dying, we can now allow for a family member too at the bedside. My experience in the ICU when that’s offered, more times than not family members actually say no, that they don’t actually want to come to the ICU. There’s a real infectious risk to them, and I’ve had a lot of family members say, “I don’t know that I want to see them again the way they are now. I want to remember them the way they were before.” The wife was in such distress and despair over the idea that she was so physically close in Boston but it wasn’t the right decision for her to come into the hospital. I spent a lot of time and I was even grasping at things: Can I arrange a Zoom call? Maybe I can record a video and send it to you guys? And the family was saying, We want to remember him in a different way.

They said, We just want you to go to his bedside and hold his hand so that he knows he’s not alone. And I did that over the course of about 15 minutes. He died pretty quickly.

I’ve been part of a lot of deaths of patients in palliative care. We don’t see a lot of death like this—without any family members present. We aren’t used to being that person at the bedside, trying our best to provide the comfort that a family member’s presence would provide and feeling inadequate in that at best. Afterwards I gathered his nurses and respiratory therapist and we talked. Everyone agreed it was unlike anything they had been part of.

It was the first time I had touched him. And in the ICU, probably one of the only times I’ve physically touched the patient.

Natasha Lever, Palliative-Care Nurse

I’ve been a nurse practitioner for seven years, and I was hired at Brigham to do heart-failure and palliative care. Literally the week after I started, COVID-19 happened. They had this whole very carefully planned out 12-week orientation, and I got a phone call from our director, Jane, and she said, “Either we’re going to keep you at home for the next few months or we’re just going to put you in the ICU.” I kind of got thrown into the deep end.

I went into nursing because I love to be at the bedside and with patients. Not having families and loved ones at the bedside was probably the most difficult part of all of this. It felt so wrong to us that families were having to make decisions about withdrawing care when they haven’t seen their loved ones.

I remember the one that hit me the most was a woman whose son had given her COVID-19. He had been quite ill himself, and he had recovered. The immense guilt that he felt was so profound. He kept saying—he’d obviously been watching the news—“Please, don’t throw her in a body bag if she dies.” He kept talking about how they had been so excited they were going to move into a house together and he was going to buy his first house. He had plans for her and just wanted her home so badly. She passed away and it was very difficult.

That was one of my first cases. And this was week two of my job as a palliative-care practitioner.

I remember the first day I was in the ICU, it was completely chaos. It was very loud, lots of people. Almost this adrenaline rush you felt. A couple of weeks in, things sort of settled down. Now the ICU numbers are down. I had a really strange feeling when they were closing down the COVID-19 ICUs. I walked down the hallway and it was dark and all the rooms were empty and clean and there was no one there. Two weeks ago, this was one of the most busy, chaotic places in the hospital and there was just this silence. No alarms, and no people. It was almost as though, Is this a dream, did that really happen?

Now I have just started doing the orientation that I was supposed to be doing. I’m going back to the hospital. I’m extremely excited to be at the bedside. I have never been so excited to talk to a patient in real life.

Complete Article ↪HERE↩!

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More people are dying in American prisons

– here’s how they face the end of their lives

An inmate inside the nursing unit at Louisiana State Penitentiary.

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Outbreaks of coronavirus have hit prison populations particularly hard – but for many inmates in the U.S., illness and the prospect of dying behind bars already existed.

Advocacy groups have flagged concerns about disease transmission, lack of medical care and deaths in custody as a result of COVID-19. But deaths in custody are not a new phenomena and the process of dying with dignity while incarcerated is complicated.

I have spent a significant amount of time examining correctional health care practices and believe the process of dying in prison is one in which human dignity can be lost.

Prisoners grow old faster and become sick earlier. By 2030 some experts believe that one in three prisoners will be over the age of 55, increasing the likely population of prisoners diagnosed with conditions such as cancer, heart disease, liver and kidney disease, high blood pressure and diabetes.

A recent Bureau of Justice Statistics report revealed a startling increase in state prisoner mortality. Between 2006 and 2016, the last year for which the study provided data, there were more than 53,000 deaths in custody. More than half of the 3,739 deaths in custody in 2016 resulted from just two illnesses – cancer (30%) and heart disease (28%).

The proportion of prisoners requiring end-of-life care is twice as high as the general population.

An inmate with cancer in Colorado Territorial Correctional Facility’s hospice program.

Outside prison walls, a diagnosis of a terminal illness often means gathering friends and family to repair and restore relationships and thinking about end-of-life options. The coronavirus has, of course, affected who can be present in someone’s last moments, but the terminally ill still have options over their medical care, pain management, who to tell and how, and getting affairs in order. For prisoners, such choices are constrained by state regulation. Prisons are not well-equipped to provide human dignity at the end of life. Terminally ill prisoners have two options: compassionate release or end-of-life care behind bars.

Showing compassion

Offering early release or parole to prisoners diagnosed with debilitating, serious and often terminal illnesses is considered compassionate release. Many in the medical profession consider compassionate release a constitutionally protected right as incarceration of prisoners with debilitating illness undermines medical care and human dignity. Others see compassionate release as a way to reduce correctional health care costs for a population posing little risk to the public. Iowa is the only state without a compassionate release law.

The process of qualifying for compassionate release is complex and statistics on how many succeed are hard to obtain, although we know the numbers are small. Prisoners’ medical conditions, age and time served determine eligibility. But exclusion criteria are extensive. For example, prisoners committing the most serious crimes are excluded. Most states allow stakeholders such as victims, police and court professionals an opportunity to say no.

For the terminally ill, release is often dependent on one’s “death clock” – how many months a medical professional certifies that you likely have before dying. In some states like Kansas and Louisiana, death must be imminent – within 30 to 60 days. In others like Massachusetts and Rhode Island, prisoners with as long as 18 months to live may be released. Applying for compassionate release can be daunting for someone with only months to live. Sadly, some die before they can complete the process.

Even if an inmate does get out, their family may be ill-equipped to deal with the challenges of caring for a dying loved one. In these cases, release may result in transition from one restrictive, isolated, institutional setting to another with care provided by unfamiliar medical professionals.

End-of-life sentence

States must provide medical care to prisoners even though they are being punished for a crime. But the quality of such care is often inadequate. The prisoner does not get to select medical options; care is determined by the state. Death could mean dying alone in a prison cell, in an infirmary with only periodic check-ins from a nurse and prison volunteers or in a hospice unit managed by the state.

Pain management may be restricted by correctional policy and by staff who are reluctant to administer narcotics, such as morphine, to ease suffering out of concern that it could be sold or used illicitly. A recent report in the American Society of Clinical Oncology Post discussed how inadequate care caused unnecessary pain and suffering in prison and concluded: “No one in a wealthy and socially advanced country like the United States should suffer from untreated pain, especially at the end of life.”

While families are allowed to visit terminally ill prisoners, notification of the illness rests with the prisoner – a daunting task if the prisoner has lost touch with relatives over years incarcerated. State prisoners are often confined far from home, so even family members who would like to visit may be hampered by distance and cost. Another challenge for families is the bureaucratic process of prison admission. It is correctional staff at the gates rather than medical professionals determining who gets to visit on any given day.

Access to a mainstream faith leaders and last rites are provided when available. But it is not uncommon to find spiritual practices for the dying prisoner carried out by fellow prisoners.

For terminally ill prisoners “getting one’s affairs in order” includes trying to identify someone in the community willing to take responsibility for their body after death and ownership of personal effects gathered during incarceration. Even if the prisoner identifies a relative willing to take responsibility, there are no guarantees. A relative may be disqualified from handling prisoner affairs. In Ohio, for example, if the prisoner’s loved one is unable to accept the body within two days after notification, the relative may be disqualified.

If no one comes forward, then the prisoner will be buried in an indigent grave and prison officials will dispose of the prisoner’s belongings and monies remaining on prisoner accounts.

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‘Not Priests, Nor Crosses, Nor Bells.’

The Tragic History of How Pandemics Have Disrupted Mourning

By Olivia B. Waxman

On a recent Monday in a New Jersey cemetery, social worker Jane Blumenstein held a laptop with the screen facing a gravesite. A funeral was being held over Zoom, for a woman who died of COVID-19. It was a brilliantly sunny day, so a funeral worker held an umbrella over Blumenstein to shield the laptop from any glare, as synagogue members and family members of the deceased sang and said prayers.

The experience was a “surreal” one for Blumenstein, who is a synagogue liaison at Dorot, a social-services organization that works with the elderly in the New York City area. “I felt really privileged that I could be there and be the person who was allowing this to be transmitted.”

The roughly 20-minute ceremony was one of countless funerals that have taken place over Zoom during the COVID-19 pandemic. As authorities limit the size of gatherings — and hospitals limit visitors in order to prevent the spread of the novel coronavirus — loved ones have been unable to gather for traditional mourning rituals in the aftermath of a death, so it has become the norm for those who die to do so without their families by their sides, able to say goodbye only virtually, if at all.

The rising death toll has overwhelmed funeral homes and cemeteries, further limiting what is possible. Across religions and around the world, end-of-life traditions have been rendered impossible: stay-at-home orders have stopped Jewish people from sitting shiva together; overwhelmed funeral services have meant Islam’s ritual washing of the body has been skipped; Catholic priests may have had to settle for drive-through funerals, in which the coffin is blessed in front of just a few immediate family members.

The effects of COVID-19 will be felt for many years to come, but those who have lost loved ones are feeling those effects immediately — and, for many, their pain has been exacerbated by the inability to say goodbye. The horror of these rushed goodbyes may be looked back on as a defining feature of the COVID-19 pandemic. But, as the tragic history of pandemics reveals, it is something that disease has forced human beings to struggle with throughout history.

For example, during a 1713 plague epidemic in Prague, a shortage of burial supplies heightened the pain of rushed burials. The emotional toll is evident in a Yiddish poem written shortly after the outbreak, translated for TIME by Joshua Teplitsky, professor of History at Stony Brook University, who is writing a book about this period. At the sight of the dead being carried away day and night, “all weep and wail!,” the poem says. “Who ever heard of such a thing in all his life?” The poem describes people working around the clock and through the Sabbath to saw planks for coffins and sew shrouds.

In one 1719 book, a rabbi recalls counseling a man who was anxious about burying his plague-stricken father in the local cemetery because of a government requirement to coat the body in a chemical to accelerate decomposition. He asked the rabbi if it would be more respectful to bury his father in a forest far outside of the city. The rabbi told the man to follow the rules, likely thinking that “if the body gets buried in the woods, in a very short time, it will be lost, and if it’s in the cemetery, the rabbi is expecting that when this plague passes, visitors will go pray and pay their respects,” says Teplitsky.

Indeed, Teplitsky found a prayer printed circa 1718-1719 that he believes women may have recited while walking around a cemetery years after the epidemic, asking the dead for forgiveness for the lack of a traditional funeral and burial five years earlier.

Centuries later, during the 1918-1919 flu pandemic, Italians were likewise thrust into a world in which funerals had to take place quickly, without ceremonies or religious rites. According to research by Eugenia Tognotti, an expert in public health and quarantine, and a professor of history of medicine and human sciences at the University of Sassari, Italy, many expressed horror at hurried burials in letters to friends and relatives, which are preserved at the Central State Archive in Rome. “The more common lamentations are: ‘Not priests, nor crosses, nor bells’ and ‘one dies like an animal without the consolation of family and friends,’” Tognotti told TIME. Another woman wrote to a relative in Topsfield, Mass., “Here [in Italy] there is a mortal disease named Spanish flu: the sick die in four or more days, a bucket of lime is thrown over the dead bodies, and then four workers take them to the graves like dogs.”

The horror was similar in the U.S., especially in Philadelphia, an epicenter of the pandemic. Columba Voltz was an 8-year-old daughter of a tailor back then, who said that funeral bells tolled all day long as coffins were carried into a local church for a quick blessing and then carried out a few minutes later, according to Catharine Arnold’s Pandemic 1918: Eyewitness Accounts from the Greatest Medical Holocaust in Modern History. “I was very scared and depressed. I thought the world was coming to an end,” Voltz recounted.

Inside one such house, Anna Milani’s parents laid her 2-year-old brother Harry to rest with what they had on hand:

There were no embalmers, so my parents covered Harry with ice. There were no coffins, just boxes painted white. My parents put Harry in a box. My mother wanted him dressed in white — it had to be white. So she dressed him in a little white suit and put him in the box. You’d think he was sleeping. We all said a little prayer. The priest came over and blessed him. I remember my mother putting in a white piece of cloth over his face; then they closed the box. They put Harry in a little wagon, drawn by a horse. Only my father and uncle were allowed to go to the cemetery. When they got there, two soldiers lowered Harry into a hole.

The same concerns that would have limited attendance at the cemetery when Harry Milani was buried reared their heads more recently during the 2014-2016 epidemic of Ebola, a disease that can be spread through contact with the remains of those it kills. More than 300 cases came from one Sierra Leone funeral, and 60% of Guinea cases came from burial practices, according to the World Health Organization. In Liberia, mass cremations ran counter to traditional burial practices that include close contact with bodies. In Sierra Leone, the dead were put in body bags, sprayed with chlorine and buried in a separate cemetery designated for these victims. As traditional burial practices were curbed in an attempt to stop the spread, the dismay caused by this situation, Tognotti notes, was the same feeling experienced by those Italians of the early 20th century who wrote of the pain of the flu pandemic.

Sometimes, however, victims of epidemics who knew the end was near were actually hoping for a departure from the usual norms of burial and mourning: they wanted their deaths to be used to remind authorities to take these crises seriously.

This idea of the political funeral is particularly associated with the AIDS epidemic of the 1980s and 1990s. The activist group ACT UP spread the ashes of victims over the White House lawn, and staged political funerals—open-casket processions, such as the one that brought Mark Lowe Fisher’s body to the Republican National Committee’s NYC headquarters ahead of the 1992 presidential election. “I have decided that when I die I want my fellow AIDS activists to execute my wishes for my political funeral,” Fisher wrote, in a statement entitled Bury Me Furiously. “We are not just spiraling statistics; we are people who have lives, who have purpose, who have lovers, friends and families. And we are dying of a disease maintained by a degree of criminal neglect so enormous that it amounts to genocide.”

The inability to give loved ones proper send-offs is often a hidden cost of these pandemics, Tognotti says, and should not be ignored by officials. Even with modern knowledge about disease transmission, awareness of the reasons for public-health guidance doesn’t lessen the desire to participate in rituals. “The emotional strain of not being able to dispose of the dead promptly, and in accordance with cultural and religious customs, has the power to create social distress and unrest and needs to be considered in contemporary pandemic preparedness planning,” she says.

In this pandemic, a new openness about talking about mental health issues could help. For example, New York state launched a hotline so residents can talk to a therapist for free, and some sites host virtual sessions to discuss grief. Mourners can opt for live-streaming and video conferencing and include more people virtually than before.

For others, these virtual gatherings and brief blessings at the cemetery are placeholders. In March, after Alfredo Visioli, 83, was buried in a cemetery near Cremona in northern Italy, with no relatives allowed to attend and a brief blessing from a priest, his grand-daughter Marta Manfredi told Reuters that, “When all this is over, we will give him a real funeral.”

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The misunderstood funeral tech that’s illegal in 30 states

From mafia propaganda to moral outcry, what’s stopping us from embracing water cremation technology?

By Steph Panecasio

When you die, your body is going to decompose.

It starts from the moment you pass. Your organs begin to shut down. Hair stops growing, skin recedes. Some parts of the body take longer than others, but eventually, as with all things, it all starts to break down.

If you opt for a traditional burial, your remains will spend years nestled within a casket underground, progressing into a deeper state of decomposition. If you opt for a traditional flame-based cremation, you eliminate any further decomposition by burning it to a halt.

But there’s also another alternative — one designed to accelerate the decomposition process through the medium of water. It’s known as alkaline hydrolysis, or water cremation. One part spa, one part chemical blend, a few hours of a swirling soak, and your earthly remains are no longer.

“It’s basic chemistry,” explains Anas Ghadouani, leader of the research group Aquatic Ecology and Ecosystem Studies. “You have organic matter and you add a base to it and it just decomposes. You can write the equation to it. It’s very simple.”

Despite this, alkaline hydrolysis remains one of the most divisive and misunderstood practices in contemporary funeral technology.

The machine

Alkaline hydrolysis is a form of cremation that uses water and chemicals to break down the human body to its bare minimum. Salts, amino acids, peptides. Like flame-based cremation, it produces ash that can be taken home. Unlike flame-based cremation, it’s illegal for use on human bodies in almost 30 states in America.

The concept itself isn’t new. Amos Herbert Hobson of Middlesex, England, patented the first alkaline hydrolysis machine all the way back in 1888. He used it to dispose of animal carcasses.

In the century and a half since, the technology has evolved, and it has the potential to shake up the death industry. 

The process is straightforward. Bodies are placed in a machine containing a chemical mixture of water and alkali. The mixture is then heated and cycled. Over the course of hours, the body is accelerated through its natural decomposition process, resulting in a residual liquid made up of amino acids, peptides, salt, soap and bones — the last of which is broken down into white ash.

Joseph Wilson, now founder and CEO of leading alkaline hydrolysis manufacturer Bio-Response Solutions, helped design the first commercial-use human alkaline hydrolysis unit in 2005.

“I was stunned that there was a way to dispose of tissue without burning,” said Wilson. “You don’t have any external pumps or tanks or chemicals. It’s all there at the machine.”

There are undeniable benefits to this process. In 2011, a study from the University of Groningen compared conventional burial, cremation, alkaline hydrolysis and cryomation and found that alkaline hydrolysis had the lowest overall environmental footprint.

The low temperature also means pacemakers and joint replacements can remain inside the body. In flame-based cremation, these are extracted to prevent a reaction — pacemakers, especially, are incredibly volatile when subjected to extreme heat.

Yet despite the fact that flame-based cremation subjects the remains to intense fire, alkaline hydrolysis is seen as the more graphic option for potential funerals, when both are just as valid. Legal roadblocks and cultural concerns have plagued water cremation since its inception.

And there’s a simple reason for that: Alkaline hydrolysis has a reputation shaped by years of misrepresentation. Nobody wants to feel like they’re disrespecting their loved ones.

Media, morals and the mafia

Most people’s first experience of alkaline hydrolysis is through popular culture.

In the second episode of Breaking Bad, audiences sees drug dealer Jesse Pinkman dissolve a dead body in his apartment’s bathtub using hydrofluoric acid he’d sourced from his high school’s chemical stores. He returns the next day only to find the acid had eaten through the bathtub itself and floorboards beneath, before finally falling through to the floor below.

Despite the effective cinematics, Breaking Bad is far from realistic. Hydrofluoric acid, while highly corrosive, doesn’t have the capacity to completely liquefy remains overnight — it’s at the wrong end of the pH scale. It certainly doesn’t have the capacity to eat through a bath and the floor.

Even if it could, the science doesn’t check out — Mythbusters proved it.

Whether it’s a question of gulping down Soylent Green or shunting bodies into acid barrels, television and film haven’t been kind to the practice of alkaline hydrolysis.

Outside of television, urban legends have tarred alkaline hydrolysis with further negativity. In 2011, researchers had to debunk claims the Sicilian mafia disposed of human remains in a process called lupara bianca, or white shotgun. Just like in Breaking Bad, the mafia supposedly used acid — an entirely different, cruder chemical process.

Mafia urban legends and shows like Breaking Bad create a sense of violence surrounding water cremation that simply doesn’t hold up. Water cremation, at its core, is no more than the acceleration of a natural process.

The reality: As with almost all aspects of the death industry, there is a level of respect and dignity. You don’t see what happens in the retort of a flame-based cremator, but you won’t see what happens inside an alkaline hydrolysis machine either.

Waste not

What remains to be dealt with, however, is what comes out the other side. Ashes are one thing — you can pop them on the mantle in a decorative urn, sprinkle them at sea or even have them launched into space — but what about the residual liquid?

One of the biggest roadblocks to the acceptance of alkaline hydrolysis technology is the issue of wastewater. Because of its association with death, the liquid is perceived as too unsanitary to be processed normally. Say it goes through the same recycling plants that supply residential areas, the idea of drinking the essence of a dead body sounds abhorrent. It’s hard enough swallowing the idea of recycled sewage water. Remains? Inconceivable.

But technology already exists to tackle almost any kind of wastewater.

Sewage water is filtered for reuse in municipal treatment plants. Organic material is broken down in anaerobic digesters, which convert the material into methane or “biogas.” Specially designed ultrafiltration systems can even tackle aqueous nuclear waste.

“Any liquid waste that we have, we can deal with,” says Ghadouani.

Yet in Australia, residual liquid from water cremation isn’t permitted to be treated via the municipal water treatment facilities or digesters. More worryingly, there’s a disconnect here — and it’s one that, for the most part, is behind the closed doors of the funeral industry.

“One of the most common things the public doesn’t know,” says leading US thanatologist and death educator Cole Imperi, “is that when someone is embalmed, all the blood that comes out of your body, where does that go? It goes down the drain.”

In fact, almost all the human waste that comes from hospitals and funeral homes as a result of the embalming process is permitted to be processed through these official channels.

“So if you’re allowing byproducts from funeral homes to go into the municipal water system for treatment, why are you discriminating against one particular disposition method?” Imperi asks. “It’s an interesting kind of cognitive dissonance.”

Thanatologist Cole Imperi beside one of Bio-Response Solutions’ alkaline hydrolysis machines.

Nevertheless, in the few states that allow alkaline hydrolysis — for animals — practicing venues must provide their own wastewater filtration treatments and submit them for regular testing. It’s expensive and demanding. Venues are scarce.

Jonathan Hopkins, owner and operator of Resting Pets Cremations in New South Wales, Australia, is an alkaline hydrolysis advocate. He and his late wife opened their practice after the pain of a family pet’s death opened their eyes to the process as a cremation alternative. 

“My wife was always an animal lover and she just had a really bad experience with the [cremation] company that was serving this area,” he said. “So we approached the local council for a pet cremation system.” They landed on alkaline hydrolysis.

To ensure the wastewater passed council and environmental regulations, Hopkins created his own treatment system. He began by increasing the machine’s existing filtration capacity, with any overflow going into a separate tank. Here, microorganisms remove any remaining bacteria — much like a septic system.

“With our system, they can see what chemicals are going in, and they can see the effluent coming out. They can test it, they know where it’s going,” he said.

Reframing the narrative

Some will always struggle with the concept of alkaline hydrolysis. Certain cultures or religions might always register a stronger connection to conventional burial and cremation methods.

But our human instinct to process death isn’t incompatible with water cremation. We could use residual liquid from the hydrolysis process to help nurture the earth. A gardener, for example, could live on in the plants and flowers they once nurtured.

Conceptually, it’s not out of the question. “If the liquid waste stream were to be applied to soil as a fertilizer, there could be a role for this as a soil improver.” explains Michael Short, a senior research fellow of the Future Industries Institute at the University of South Australia.

On a larger scale, this could even benefit the wider agricultural industry.

“The wastewater stream [would be] a relatively high strength organic waste solution,” Short says. “Soils in some Australian regions are generally low in natural organic matter, so adding organics from such waste streams could help to improve overall soil quality and soil carbon stocks.”

It may sound strange on first pass, but why not? If it gives someone peace of mind that our loved ones will “live on,” the transmutation of alkaline hydrolysis liquid to fertilizer may just be the PR dream the technology has been waiting for.

Alkaline hydrolysis may not be accepted anytime soon. It may take years of building up a more positive association. Maybe even decades.

It all comes down to whether states and countries are willing to test the waters.

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Indian Capital’s Crematoriums Overwhelmed With Virus Dead

The Associated Press

When Raj Singh’s 70-year-old mother died from the coronavirus in India’s capital, he took comfort in the prospect of a proper cremation, the funeral rite that Hindus believe releases the soul from the cycle of rebirth.

But instead of chanting sacred Vedic hymns and sprinkling holy water from the Ganges River, all Singh could do was place his mother’s wrapped corpse on a wooden pyre and along with a handful of relatives watch it burn.

“I never thought I would watch my mother go like this,” he said.

Like elsewhere in the world, the novel coronavirus has made honoring the dead in New Delhi a hurried affair, largely devoid of the rituals that give it meaning for mourners. Cemeteries and crematoriums are overwhelmed, so there isn’t much time for ceremony, and even if there were, the government limits the number of people allowed at funerals and those in attendance must maintain distance and wear masks.

“The whole grieving process has been interrupted,” said Pappu, who goes by only one name and lights the funeral pyres at Nigambodh Ghat, New Delhi’s biggest crematorium.

New Delhi has officially reported close to 1,100 deaths from the coronavirus, but cemeteries and crematoriums in the city say the actual number is several hundred higher. Hospital morgues are beyond capacity, and with summer temperatures reaching 40 degrees Celsius (104 degrees Farenheit) some bodies are being kept on thick ice slabs.

“In the beginning, I used to carry only one body. Now, helpers at the morgue will stack as many bodies as they can fit in my van,” said Bhijendra Dhigya, who drives a hearse from one New Delhi hospital to the crematorium.

The spike in deaths in New Delhi comes amid a broader virus surge throughout India, where authorities are reporting some 10,000 new infections each day and more than 300 deaths. Nevertheless, India lifted most of the remaining restrictions from its 10-week lockdown on June 8, the same day it recorded what at the time was its highest single-day death toll from the virus.

On Friday, India’s nationwide caseload overtook Britain to became the fourth highest in the world with 297,535 confirmed cases and 8,498 deaths, according to the Health Ministry. But that is just the known cases. Like elsewhere in the world, the actual number of infections is thought to be far higher for a number of reasons including limited testing.

New Delhi’s health centers are under immense strain and the state government’s deputy chief minister, Manish Sisodia, said this week that a state health department model has projected a worst case scenario in which the number of infections in the capital — already at nearly 35,000 — could reach 550,000 by the end of July.

In the worst case scenario, Sisodia said New Delhi would need 80,000 hospital beds, far more than the roughly 9,000 hospital beds currently available for virus patients. The state government is considering taking hotels and sports stadiums to use as field hospitals.

The capital’s Nigambodh Ghat crematorium has handled more than 500 coronavirus cremations since the beginning of the outbreak. When some of its gas-fueled incinerators broke down, there was no one willing to repair them, so the staff reverted to traditional wooden pyres.

Even with working hours extended, there has been no time for individual cremation ceremonies and exhaustive rituals with incense, garlands of marigold and chanting.

The crematorium is now largely quiet except for the distinct snap and crackle of the burning wood and the din of sirens from ambulances bringing more bodies.

The virus has upended Muslim burial rituals in the city as well.

Islamic burials normally involve a simple ceremony. Before the body is laid to rest, it is washed. Those attending the funeral are allowed to have a look at the face of the dead and a prayer is performed, followed by a sermon from a cleric. Then close family members help place the body in a grave.

Now bodies arrive at New Delhi’s largest Muslim cemetery in hearses manned by crews in hazmat suits. Bodies aren’t washed and mourners can’t view them. There are no sermons.

The cemetery has already seen more than 200 burials of COVID-19 victims and with bodies steadily arriving, the grounds are filling fast.

On a recent day at the burial of a 22-year-old man who died of the virus, a backhoe dug a grave as four relatives said a speedy prayer. The body was then lowered into the grave by ropes.

Mohammad Shameem, a gravedigger who now oversees the burials, shook his head in disapproval as the backhoe quickly carved out another grave.

“That’s not how burials should happen,” he said.

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