As the northern hemisphere moves into the winter, the wind blows in the reminder that so much will be lost. I’ve seen the posts of people I don’t know, but who are close to those I do, sharing stories of family members getting sick or dying of COVID.
It’s getting closer. Faster. The air is thicker with uncertainty.
Of realization that there is no one coming to save us from this virus.
Because there is no quick fix. There is no perfect protection.
(I know this is grim.)
I know these times are more dangerous because of the fear. I have seen it cause even the most steady folks to sway. Some to risky choices. Some to conspiracy.
I know I am in a moment that history will look back on and point out all of the wrongs.
But this is not a measured conversation where I can hide behind lovely words.
There are people dying.
Not Enough Space for the Names
I was on a social media page and someone talking about an altar with candles for the dead on their heart. And that there wasn’t enough space for all of the candles.
After all, more than 250,000 in the United States (and many more by the time this is posted) requires a large space. An impossibly large expanse of holding.
I want to light candles for all of you. I want to brighten this time with your names.
And I want to hold space for the ones who have watched. Watched loved ones die. Said goodbyes over video. Begged to be in the room only to be turned away.
Safety. Not you too.
What is Coming (Soon)
In the beginning, I read a lot about anticipatory grief. The knowing that loss is coming and not being able to stop it.
My heart remembers when my dad was diagnosed with COVID. And the days of blurry, fuzzy thinking. Trying to make decisions as a family about what we would do if…
Touch and go. Faith and fear.
Prayers. Offerings. Outbursts.
I have a stubborn heart, I know. I have clung to believing people are good overall. They will look out for each other. I’ve seen it. I have relationships that have proven it.
But when I look outside my carefully curated community…
I am likely not sharing anything that hasn’t been said. I know there are many more that feel this way. Alone. Helpless. Quietly screaming.
Arguing with ‘friends’ on Facebook doesn’t help. Posting the millionth meme about wearing masks doesn’t ease the tension. Staying home only gives more space for the feelings to become louder.
There is grief around the corner. There is grief in the hallway. There is grief in the pillow underneath my head at night.
Because it is everywhere.
Building a Relationship with Grief (Before)
Whether you have lost or not, whether you have been impacted or not, the grief will be a tsunami. I have been holding back my own waves because I don’t know where they will crash. Into you? Into me? Across the yard?
I have taken to sitting with grief now. I see it as an unscreamed scream. An unhugged hug. The empty place into which love pours and pours and pours.
I sit and I ask grief what it needs.
I have an altar to grief. Where I sit. Where I have an amethyst. Where I have bones.
My heart holds an altar too. Memories live there.
I sit at the altar. Sometimes, I weep. Sometimes, I am silent. Sometimes, I sing.
Sometimes. Nothing comes. Time between time.
I write poems to grief. I write letters.
Even when the words feel empty or insignificant.
The Arrival of Grief
And I realize I am preparing for grief’s arrival. All of the ways I have pushed it back, saying that since I can’t grieve in community, I will be patient.
I will wait. I must wait.
It is the thing these moments require.
The space before.
But there are a lot of echoes waiting to be screamed screams.
I imagine you have come here for answers. For solutions. For spells. For prayers.
I just show up for it. I make time for grief. Just as I would for any other relationship.
But first the women, members of a Jewish burial society in Pittsburgh, must sing a final prayer.
They press the Mute button.
On Zoom their voices refuse to ring as one, so one singer takes the lead while the undertaker, who is Catholic, wraps the body in simple white shrouds.
D’Alessandro Funeral Home & Crematory occupies a building that has cared for the deceased and bereaved in Lawrenceville, Pennsylvania, since 1897. But this — a Catholic funeral director participating via Zoom in a centuries-old Jewish tradition — is likely a first, said Dustin D’Alessandro, the mortuary’s supervisor.
It’s preferable to perform the ritual in person, said Malke Frank, founder of New Community Chevra Kadisha of Greater Pittsburgh.
But many members of the burial society are elderly and fear entering a funeral home before there is a vaccine for Covid-19, the deadly illness caused by this coronavirus. Like so many other events during this pandemic, the taharah, the name for the ritual, is performed virtually, with a bit of ingenuity and help from undertakers.
While Frank and her fellow volunteers visualize washing and drying the body, D’Alessandro walks with them through the ritual step-by-step.
“We consider them partners in what we do,” said Frank.
Ancient rituals have been forced to change
Religious rites evolve over time, said David Zinner, president of Kavod v’Nichum, a national group for Chevra Kadishas, which is Hebrew for “sacred society.”
The resurgent pandemic, which has hammered the US with new urgency in recent weeks, has sent that evolution into hyperspeed.
While public health officials are still learning about how Covid-19 spreads, the CDC has said “it may be possible” that people could become infected by touching the body of someone who has died of the virus.
“We went from caring for a person’s body the way we have for four hundred years to suddenly not being able to do that anymore,” Zinner said.
The coronavirus has changed so much about how we live, it was inevitable that it would alter how we die as well. The graveside gatherings, shoulder-to-shoulder prayers, consoling hugs and timeworn rituals have been canceled or curtailed for fears of contagion.
But grief abhors a vacuum. So traditions have been adapted, as clerics turn to emergency measures prescribed in their religious laws. That’s especially true of rituals, as in Judaism and Islam, that rely on touch and intimacy with the deceased. In some instances, funeral home directors and burial societies across the country are crossing religious lines to help perform the sacred rites of passage.
D’Alessandro, who has participated in 12 burial purifications, said Frank’s society taught him about the meaning behind the rituals, imparting a sense of their importance to the living and the dead.
“I’m glad they’re allowing me to do it, despite not having a background in Judaism,” said D’Alessandro. “It’s just an incredible thing to be a part of.”
He’s insisted on providing full Islamic burials
When Covid-19 raged through New York City earlier this year, Imtiaz Ahmed was proud that his was one of the few funeral homes that still offered ghusl, an Islamic purification ritual performed on the recently deceased. As in the Jewish tahara, the body is cleansed, usually by a close family member and burial expert, then dressed in simple white robes before it is buried.
It was quite a turnaround for the Pakistani-American, who used to drive a cab and was squeamish about touching dead bodies. Now, Ahmed says, he has a clear mission.
“Once Covid started I realized that I had made the right decision,” said Ahmed, 39, “because people need my help.”
But some of the employees at his Al-Rayyan Funeral Services in Brooklyn’s “Little Pakistan” neighborhood were more reluctant. Several quit, citing health conditions or fear of contagion, Ahmed said.
The Centers for Disease Control recommends taking precautions with rituals that involve touching the dead and urges funeral homes to suit up with proper protective equipment. It is not yet known whether dead bodies can transmit the disease, according to the CDC.
The Fiqh Council of North America, a group of scholars who offer opinions on Islamic law, said there are several alternatives to touching the bodies of Covid-19 victims. In a “worst case scenario,” the council said, Muslim leaders should adopt a different method of cleansing, using sand instead of water and not opening the body bag.
Others, such as Ahmed in Queens, consider Covid-19 victims martyrs, following the Prophet Muhammad’s teaching about believers who die in plagues.
“We believe that God forgives you for whatever you are not able to do,” said Yasir Qadhi, dean of academic affairs at the Islamic Seminary of America in Dallas and a member of the council of scholars. “If the government is asking you not to wash deceased bodies, as psychologically painful as that might be, it will not affect the deceased.”
Still, many Muslims feel guilty for not being able to provide full Islamic burials, said Dr. Edmund Tori, a medical doctor and president of the Islamic Society of Baltimore.
“When you modify the prayer, you are messing with something that is very, very dear to people,” said Tori, who said his society spent several months educating the community about changes to religious practices because of Covid-19.
Muslims in Baltimore were nearly as upset about alterations to the funeral prayers. In Islam, the funeral prayers, called janazah, are a communal obligation and typically draw large crowds to mosques.
Muslim funeral homes and mosques have tried to accommodate mourners by holding the prayers outdoors, in parking lots or other open spaces hospitable to social distancing.
But the desire and obligation to attend the prayers are so great, Tori said, that the Islamic Society of Baltimore has stopped sending funeral notifications — or sends them only to a small group of people close to the deceased.
When the architect of the Islamic Societies campus died of Covid-19, Tori said, leaders kept the news quiet, leading to some upset feelings.
“Let’s just say people were not happy,” said Tori. “Everyone wanted to be there. It took a lot for the community not to come.”
This group provides ‘midwives for the soul’
Zinner, the president of the national group for Chevra Kadishas, said the risks are too high for Jewish burial societies to perform the ritual purifications in person.
The live people in the room, not the deceased body, pose the greater danger, he said. Taharahs are often performed in small rooms, with people working and singing in close proximity.
“We have to recognize that the risk is high,” Zinner said, “and we have to wait until it’s reduced.”
Instead, Zinner recommends “spiritual taharas” like the virtual service in Pennsylvania.
But the Chevra Kadisha of Greater Washington, near the nation’s capital, is continuing to conduct in-person purification rituals, said Devorah Grayson, leader of the women’s section. (Women wash and dress women; men do the same for men.)
Grayson said her society has consulted with the National Institutes of Health and CDC and volunteers wear masks, face shields, two gowns and pairs of gloves, rain boots and disposable shoe coverings. Still, 35-45% of the society’s volunteers will not perform the ritual in person.
Grayson compared participating in the ritual to going grocery shopping in the pandemic.
“The first time I did it,” she said, “it was terrifying.”
But Grayson, who belongs to the Orthodox strand of Judaism, said she feels a holy obligation to help Jews on the threshold between this world and the next. One name for burial society volunteers is “midwives for the soul.”
When souls meet God, Grayson said, they should be dressed with dignity — pandemic or not.
And so, the volunteers will continue to perform the rituals. They have survived plagues before.
When the body is properly prepared, Grayson will help place it in the coffin, adding a little soil from Israel, and softly close the lid. The midwife’s job is over, and now the soul’s must begin.
A good death is achieved by advocating for, and acting on, what is safest for the pet, what is most meaningful for the caregiver, and what will nourish the veterinary team
By Kathleen Cooney, DVM, CHPV, CCFP
Animal euthanasia has come a long way in the past 15 years. With the increased attention given to the human-animal bond, particularly during COVID; the emotional complexity of animals; and the recent and welcomed focus on veterinary wellness, the importance of a good death has risen to center stage. In forward-thinking veterinary practices, the euthanasia appointment is no longer an unpleasant burden in the day, but rather a rare gem of connectedness and intimacy so many of us look for in our professional lives. It provides teams the chance to slow down, to listen to stories, to take deep breaths in quiet reflection in an otherwise chaotic schedule. Euthanasia, while sad and heartbreaking, can lead to rich personal satisfaction when performed well. When love is at the heart of our work, the veterinary profession finds peace, even when life is lost.
Good euthanasia has evolved past the simple “one step” of giving an injection. It orbits around consistent components such as the right timing, compassionate staff, skillful techniques, and loved ones gathered close. The focus has been shifting to ensure the pet’s last moments are comfortable and peaceful, rather than just getting it over with as soon as possible—quality over quickness, in most cases. When it comes to euthanasia, if it’s worth doing, it’s worth doing right, especially since there are no do-overs.
To understand the scope of the “good death” revolution, we need to explore some key game-changing influences that have brought about the shift. The first worth mentioning is the attention paid by the American Veterinary Medical Association (AVMA) and other governing bodies to euthanasia techniques and animal welfare. Numerous revisions have been made to AVMA’s Guidelines for the Euthanasia of Animals, most recently in 2020. The document highlights the value and significance of proper technique choices and the ethical considerations we all must weigh, regardless of the species in question. Are they perfect? No, but they are extremely well-thought-out and closely match peer-reviewed literature. They will improve as research progresses and as society dictates.
A second influencer then has to be society’s demand on veterinary professionals to deliver a death worthy of the life itself. It is well understood pet owners largely view their animals as family members or loving companions. As evidenced further on in this article, loving pet owners regularly view the euthanasia appointment as a modest funeral. More and more are seeking those special touches that pay added respect for their companion.
As a home-euthanasia specialist, I’ve had many families over the years attend the euthanasia of their pet wearing suits and ties. Even though no one would see them, they dressed up to honor the life and the loss. Jessica Pierce, PhD, bioethicist and purveyor of the good death revolution, advocates for what she refers to as the sixth freedom: the freedom to die a good death. She adds this freedom to the already well-known five freedoms of animal welfare. “A good death is one that is free of unnecessary pain, suffering, and fear; it is peaceful; and it takes place in the presence of compassionate witnesses. It is, above all, a death that is allowed its full meaning.” The euthanasia of a family pet is significant and for many, will be their first experience with death.
A third major influence was/is the recognition by many in the veterinary profession that death needed to be more meaningful. The kind of experience we are talking about here is one that leaves the entire veterinary team feeling they provided the best medicine possible and supported the client throughout. Approximately 20 years ago, a small number of veterinarians and technicians throughout North America found just how enriching full devotion to the euthanasia experience can be. They shifted their appointments to focus on the bond as much as the act of euthanasia itself.
Early adopters had numerous things in common. They:
Took time to preplan and provide highly individualized care
Increased euthanasia appointment times
Offered home services
Provided sedation or anesthesia to all pet patients
Elevated bereavement support
In return for these specialty touches, clients showered them with thank you cards and told other pet owners about the wonderful care they had received. Through eventual collective sharing of their successes in advanced euthanasia work, other veterinary professionals joined in and the modern revolution began. Since 2011, at least seven books have been written focusing entirely on companion animal euthanasia (or contain chapters on the subject), more end-of-life care guidelines are available, and the number of pet bereavement organizations has skyrocketed. Today, there are more and more veterinarians specializing in euthanasia work, many of which offer animal hospice services as well. Animal hospice is a philosophy of care aimed at providing emotional and medical support for the dying pet and caregivers. As of early 2020, the International Association for Animal Hospice and Palliative Care (IAAHPC) touts more than 800 members, a number sure to grow in the coming years.
Have you ever thought about how much really goes into a euthanasia appointment? If you start to explore all the components of a good death experience, it’s no wonder euthanasia appointments are lengthening.
Here is a list of 14 essential components of companion animal euthanasia as developed by the Companion Animal Euthanasia Training Academy (CAETA).* Spelling out “good euthanasia,” each aspires to minimize stress for the pet, provide emotional support for the caregiver, and streamline the actions of the veterinary team.
G: Grief support materials provided
Examples: Printed pet loss guides, books, or direct links to online resources.
O: Outline caregiver and pet preferences
Examples: Talk about what’s important to the caregiver and pet. Match what they need.
O: Offer privacy before and after death
Examples: Make sure a family has time to be alone with their pet if requested.
D: Deliver proper technique
Examples: Always use the most efficient and appropriate technique based on the pet’s health and available supplies.
E: Establish rapport
Examples: Slow down and emotionally connect with the caregiver and pet before proceeding.
U: Use of pre-euthanasia sedation or anesthesia
Examples: Sleep before euthanasia reduces anxiety and pain, and increases technique options.
T: Thorough, complete consent
Examples: Every euthanasia must be properly documented in records.
H: Helpful and compassionate personnel
Examples: Engage staff to assist who are naturally empathetic. The use of a “euthanasia attendant” is strongly encouraged (more about this later).
A: Adequate time
Examples: Slow down, block out enough time to complete all 14 components.
N: Narrate the process
Examples: Describe what each step of the process looks like, being mindful to keep language simple and uncomplicated.
A: Avoid pain and anxiety
Examples: Be gentle when handling the pet, use sedation whenever possible, and go slow to reduce anxiety.
S: Safe space to gather
Examples: Consider using a quiet room in the hospital or performing the euthanasia at home.
I: Inclusion of loved ones
Examples: Talk to caregivers about who should to be there, including other household pets bonded to the one being euthanized.
A: Assistance with body care
Examples: Preplan with families around what’s important to them and carry out their wishes as if the pet were your own.
In addition to veterinarians carrying out the medical act of euthanasia, vital support staff help ensure everything goes well. Empathetic veterinary technicians, veterinary social workers, assistants, receptionists, and grief support personnel work together to ensure the pet is Fear Free and the client is carefully looked after. CAETA advocates for use of what it calls the euthanasia attendant. This person is responsible for guiding the family unit through the appointment from beginning to end. While many people may be involved in the pet’s care, one consistent person increases the likelihood that everything flows smoothly.
If you’ve been watching for change, you’re sure to have noticed the increase in specialty mobile euthanasia services around the world. According to online directory In Home Pet Euthanasia, nearly 600 mobile services have been listed since 2009 as providing home euthanasia services in Canada, the U.S., and England. Nearly 80 percent specialize in euthanasia work or the broader field of animal hospice, including euthanasia services. The shift toward home euthanasia is well-founded and necessary for many families. Pets feel safer at home. And for loving owners, being at home for their pet’s euthanasia provides them privacy and reduces the challenges of driving and interacting with others while in the midst of grief.
Home euthanasia has proven extremely rewarding work for those who offer it. It’s also gaining in popularity, with one service reporting its team of veterinarians assisted upward of 50,000 pets in the home setting in 2019. That’s an impressive number and indicates the trend of home euthanasia is here to stay.
Like any other progressive movement, advanced euthanasia did not happen overnight. And there are lingering obstacles that continue to stifle necessary change. Number one is the old paradigm that if it’s not broke, don’t fix it. It can be hard for veterinary teams to make lasting change around euthanasia. Reshaping a hospital’s culture takes time and commitment, but it can be done and done well.
Consider the following steps to create lasting change:
Dedicate one month a year to euthanasia-related discussions
Get everyone’s input on desired improvements
Create a euthanasia manual and refer to it regularly
Hold euthanasia rounds to review successes/challenges
Have multiple team members obtain advanced euthanasia training
These days, the veterinary profession recognizes the value of appropriate self-care. In this respect, self-care with regard to euthanasia begins long before the appointment. It is becoming standard practice to discuss a veterinary team member’s professional limits around euthanasia. North American Veterinary Community (NAVC) and the Human Animal Bond Research Institute (HABRI) human animal bond certification program focuses on this concept in its euthanasia module. It describes how veterinary teams should take time to determine who enjoys (yes, enjoys) euthanasia work, to write down how many euthanasias one can help in a day, week, etc., and how the team plans to practice self-care. Examples include team outings, fun food days, and setting limits on the amount of time worked in a day. The likelihood of compassion fatigue is high if care is not properly taken from the onset of euthanasia-related work.
As far as we’ve come, there is always room for growth. New techniques, improved euthanasia education opportunities, and better client support tools are on the horizon. We continue to hone our skills around gentle animal handling and pay increased attention to where we gather for euthanasia. This has never been truer than during the COVID pandemic. Veterinary teams have shifted the delivery of care, ensuring euthanasia remains an essential procedure. Creative approaches to preplanning, social distancing, technique selection, and appointment timing have played vital roles in protecting the human-animal bond. The veterinary profession dealt with these necessary modifications swiftly and compassionately. And it’s important to mention that while this article has been focused on euthanasia, death is a process, not always just a moment in time. Good death also refers to the meaningful journey leading up to death, be it natural or via active euthanasia. In the words of Benjamin Franklin, “Well done is better than well said.” To help the good death revolution flourish, we must act accordingly. A good death is achieved by advocating for, and acting on, what is safest for the pet, what is most meaningful for the caregiver, and what will nourish the veterinary team. If you haven’t already, how will you join the revolution?
When the United States recorded 100,000 deaths from the novel coronavirus, the New York Times (NYT) commemorated the lives lost by filling their front page with a list of the names of those who died, accompanied by descriptive phrases that gave small glimpses into their lives. Titled “An Incalculable Loss,” the piece helped remind us that those who perished from the virus were people, beloved members of our communities. Like many New Yorkers, I scrolled through the names on the list, trying to understand the scope of loss our city was experiencing. Like many New Yorkers, I came across a name I recognized. This name, however, wasn’t of a friend or family member, it was of one of the patients that I took care of when they got sick with COVID-19.
I work as a hospitalist at a large hospital in Manhattan. During the COVID-19 peak, I was redeployed to co-lead one of the pop-up intensive care units (ICUs) created to expand our ability to care for our sickest patients during the surge. It may not seem surprising that I came across the name of one of my patients on the NYT list, but the odds are actually exceedingly small. Although the article depicted an unimaginable amount of deaths over a few short months, the names represented only 1 percent of the total lives lost in the United States at that time. And while New York City has been the epicenter of the pandemic, Manhattan was relatively spared compared to the other NYC boroughs. And yet, we did not feel spared.
Within three weeks of admitting our first COVID-19 patient, we had filled all our existing ICUs with coronavirus cases and had started construction to create new ICUs to keep up with the number of critically ill patients. As one colleague described, it felt like we were imitating Wile E. Coyote as he frantically tried to lay down new train tracks before an oncoming train; as soon as a new ICU opened, it was filled within hours.
The name I came across in the article was one of my first patients in the newly created COVID-19 ICU where I was asked to work. As a hospitalist, I am trained as a doctor of internal medicine who cares for acutely ill hospitalized patients. Although I have worked in ICUs before, I am not critically care trained. Determined to provide my patients with the best care possible, I spent time training with our critical care colleagues, practicing procedures on mannequins, and watching countless videos aimed at brushing up on my ventilation management skills. I was partnered with an anesthesia attending and pulmonary critical care fellow to create a team that brought together different skills to ensure we could handle all aspects of the patients’ care.
Our 12-bed ICU was completely filled within 36 hours of its existence. The patient on the NYT list was one of five new patients with severe COVID-19 who came to us within four hours. We quickly realized that caring for these patients was a hospitalwide team effort. We had daily phone conferences to share our experiences, exchange ideas, and create new standards of care. We all became COVID-19-ists, united in treating just one disease. Yet, in other ways, the care of these patients was also incredibly lonely. I spent my days standing alone in the room of intubated and sedated patients, in layers of personal protective equipment, listening to the beeping of monitors and the hum of the negative pressure system, hoping that we had learned enough about this disease to help our patients survive. I often found my gloved hands holding theirs, knowing that they didn’t know I was there but hoping that my touch might make them, and me, feel less alone.
I can remember every patient in our unit those first few weeks. The 40-year-old man whose old college friends sent us daily meals for three weeks; the 80-year-old man who had a wife dying of COVID-19 in another hospital; the man who survived discharge from the COVID-19 ICU only to die in a general medicine unit a few days later from a massive bleed; the sole woman being treated in the COVID-19 unit, who used to be a nurse. Some of them passed. Some of them stayed in our unit for weeks, went to our in-house rehabilitation unit, and were eventually discharged home. Some of them are still hospitalized today. And while the stories of all those patients stay with me, the patient whose name I came across in the article is especially meaningful. He was my first patient that died of COVID-19.
The day he died was also the day that my first patient with COVID-19 improved enough to be taken off a ventilator. Our whole team stood in a mass outside of the glass doors, watching as the respiratory therapist prepped to take the breathing tube out. It would be our first time seeing someone with such severe disease survive this infection. As soon as he was extubated, the resident on our team rushed into the room with an iPad to FaceTime the patient’s family. We could hear the cries and cheers of his family from outside. My resident, wanting the family to see the team that took care of their loved one, swung the iPad around and there we were 10 masked faces cheering from just outside the room. Six feet, a glass door, and an iPad apart, we all celebrated that moment together.
But within 10 minutes of this first success, I was standing in the room of my other patient, to be with him when he died. Up until a few days before his death, his story sounded exactly the same as the patient’s we had just extubated. He was a man in his fifties, with a few well-controlled medical problems, who came in with a dry cough and shortness of breath. Both men had been on the medical floor for a few days before they were intubated. Both spent the first few days on our unit deeply sedated, paralyzed, on high ventilatory settings. But for reasons unknown to me, or to the rest of the medical community, one of them was recovering, and the other was progressing to multi-organ failure.
I stood at his bedside in disbelief that we weren’t able to help him survive. He was young, too young. He still looked robust, as if he was about to wake up and tell us to take the tube out. Like all hospitalists, I’ve taken care of many dying patients, but this death felt different. I was not used to seeing a young healthy person die of pneumonia. I was left feeling like I failed him and struggled to give him any semblance of a “good death” in the sterile, lonely ICU room.
My patient’s partner saw him for the last time over FaceTime. Family and friends texted the patient’s phone so we could read their messages aloud before he passed. I was struck by the contrast of his current situation to his last texts where he told people he was feeling fine but the doctors told him he needed to be intubated. We read him messages of love, thanks, and sadness from his family and friends, knowing that it was a poor substitute for their presence but trying to do whatever we could to imitate what a good death would look like in any other situation. I stood in the room with the nurse in silence, not knowing how long it would take for him to pass but not wanting to leave him alone. The nurse suggested it might be nice to play him some music. My goggles fogged up while I tried to find his most played list on Spotify. The music that played was upbeat and electric, completely at odds with his current situation. It made me imagine the type of person he was before he got sick, before COVID-19 took his life. An hour after his death, a new COVID-19 patient on the edge of death rolled into his now disinfected room, forcing us to quickly shift our attention to try to help this new patient survive.
When I saw the deceased patient’s name on the NYT list, feelings of hopelessness and guilt resurfaced once again. There were no proven treatments for COVID-19, so most of the time it felt like everything we were doing was just buying patients time. Buying them time to let their bodies either recover or succumb. We saved a lot of lives by buying them time, but we lost a lot, too. I clicked on his name in the article, and it led me to his obituary. I learned about his life and his passions and got a glimpse into the man who listened to that upbeat playlist. I hoped that our farewell was the good death he deserved.
A few weeks later, I was sent a video of our first extubated patient going home. He was walking out of a car, down the sidewalk, and up the stairs, all with an oxygen canister in tow. He had a big grin on his face as he looked at all his neighbors out on the doorsteps cheering him on. He probably wouldn’t recognize me if we met. He left our ICU almost immediately after he was extubated to make room for the next patient, and he never saw me without my mask and goggles. But seeing him take those steps brought me to tears. I shared the video with my team as a reminder of the meaning behind our work.
It is my colleagues that I worry about now. Every doctor in my hospital has stories like mine: stories of soaring highs and extreme lows. Doctors speak of being unable to do right by patients due to resource limitations or institutional policies. They tell stories of distress over equity in patient care and stories of rage about the societal and governmental response to this crisis. And now, with the rates of COVID-19 rising in the rest of the country, many more doctors will be dealing with these scars and collective trauma. Studies all over the world are finding higher than usual rates of burnout and depressive symptoms amongst doctors caring for COVID-19 patients. In New York, where we are just past the first wave of COVID-19, we are starting to think about how we can heal the healers.
We have learned that we need to move beyond the impromptu office debriefing with colleagues and create formalized space and time for hospitalists to share and reflect on experiences. Our hospitalist group has started the process by allowing doctors to choose the format in which they would like to debrief. Everyone had the opportunity to meet in dyads, small groups, or large groups, to swap stories, cry through losses, celebrate victories, and vent about the things we had no control over and things that we could have done better. It has let many of us explore emotions that we did not have time to deal with in the moment and may not have even recognized that we were having. It also helped us lean on the people in our lives who truly understood our experience: each other.
Part of this process also included sessions with the hospitalist section chief to reflect as a group on the response to the crisis. Hospitalists were encouraged to have honest and open discussions about what did not work well organizationally, as well as to brainstorm and exchange ideas on how the group could do things differently moving forward. Having a leader at the table who was committed to listening and enacting change was key in combating the helplessness and isolation felt by individual practitioners.
Hospitals must start prioritizing—and devoting time and resources to—the well-being of their providers during the pandemic. Given the degree of trauma experienced by providers, if we don’t address the post-COVID-19 care of physicians now, we will find the consequences of burnout rippling through the medical field. Our community has already seen its first physician suicide amidst this crisis. Beyond the negative impact of burnout on providers, we know that patients’ care will also suffer. As we prepare for a potential second surge of COVID-19 infections, it is imperative that we invest in helping our physicians recover, so they can be prepared to provide the best care possible when they are asked to lead the fight once again.
The threat of COVID-19 has forced many providers to keep high-risk seriously and terminally ill patients isolated to limit the virus’s exposure and spread. As families become disconnected from loved ones approaching the end of life, hospice providers have sought new ways to offer mental health support during the pandemic.
Social isolation during the coronavirus emergency has substantially impacted the hospice population, as well as seniors in general. Research has identified significant links between social isolation and increased risk of early mortality among older and seriously ill patients.
According to a recent report from health insurance marketplace company GoHealth, the pandemic has been driving a mental health decline among isolated aging populations as they practice social distancing from family and friends. In a nationwide study of 1,000 Medicare beneficiaries, 25% percent reported a decline in their mental wellness since the pandemic’s onset, and more than 90% felt lonelier now than before it began.
“Social isolation from friends, families and even their hospice providers visits, has impacted the mental health of hospice patients,” said Shelley Cartwright, executive director of Illinois-based Apex Hospice and Palliative Care. “Social isolation contributes to a decline in mental health. Depression, anxiety, and delirium in those who are terminally ill are frequent and currently most likely under-diagnosed as hospice frontline personnel are not being allowed to make in-person visits as frequently as they normally would as patients, families, hospitals and skilled nursing facilities are in COVID-19 precautions.”
Hospices have struggled to find a balance between technology and the human touch while offering telehealth visits and online virtual support. With families often connected only virtually in the last moments of life, disenfranchised grief has added to concerns of ramping up mental health support.
“Dying is inherently lonely and isolating and made worse when people are actually removed from their loved ones,” said Christopher Kerr, CEO and chief medical officer of Hospice & Palliative Care Buffalo in New York. “It’s ultimately a closing of a life, not just a medical phenomena, and that life is defined by relationships. The pandemic has taken a difficult situation and made it multiple times worse. It’s in moments of crisis and need that we need to connect ourselves to those people that give our life meaning. The opposite happened that when we most needed to be reconnected to those we love, we were removed.”
The sweeping effects of isolation has drawn heightened focus from hospice providers on the need for greater communication and deeper integration of psychiatric care. Research from 2018 projected that the number of seniors with mental health conditions will triple over the next three decades. An estimated 5 to 8 million aging Americans currently suffer from mental illness. Providers have been working on improving hospice access for these patients.
With facilities and hospitals limiting interactions, social isolation has exacerbated mental health concerns as hospices face barriers to reaching patients during the pandemic. One strategy being employed is increased collaboration with referring facilities, psychiatric disciplines and primary physicians as hospice work to support isolated patients and their families.
“We believe that no one should have to face serious illness or death alone,” Carla Davis, CEO of Heart of Hospice, told Hospice News. “Holistic, person-centered care delivered by hospice care teams plays a critical role in protecting and improving the mental health of vulnerable populations who would otherwise be left in isolation. The more we are able to work diligently alongside our facility partners to continue providing quality care, the better equipped we will be to prevent negative mental health outcomes in individuals facing serious mental illnesses.”
As COVID-19 cases and fatalities continue to climb, so does growing concern among hospice providers over the effects of isolation on the quality and experience of end-of-life care.
“Patients, even though imminent, often fight death until they are at peace and have said their good-byes or receive permission from their family to ‘let go,’” Cartwright told Hospice News. “Quality end-of-life experience and death for patients and their families is, and will be, jeopardized with the continued isolation of dying patients from their families.”
Finding emotional support during a crisis often means turning to long-established networks already built for distance.
By Nicole Chung
In April, when my adoptive mother began to decline after months of battling cancer, I tried to show my love and let her know I was thinking of her through phone and Skype calls, gifts and handwritten letters. I was managing her finances and helping to coordinate her care, and often felt like I was having one long, sustained panic attack.
But friends kept vigil with me, lighting up my phone with support and listening when I called to vent or cry. Sometimes the distance made this easier — if I was awake and spiraling at midnight, I knew I could reach out to someone three time zones behind without waking them.
My mom died in May. Suddenly, I couldn’t bring myself to answer when people called to check on me. I didn’t understand why. Perhaps I would have felt hesitant to beg for support, given that everyone I knew was exhausted and overwhelmed by the ongoing pandemic, but these people were reaching out to me — why was I abandoning the communication that had been my lifeline for weeks?
A few days after my mother’s death, another friend called, and as I stared at the screen I realized that I felt nauseated; my heart was racing. I had developed a sense of deep anxiety about the phone because, for weeks, it had been my conduit for receiving and passing on gutting updates. Because I did not want to say the unthinkable words — “My mom is gone” — to even the most sympathetic listener. Because no matter how often the phone rang, it would never again be her.
One of the cruelest realities of this pandemic is that it has deprived so many of us the opportunity to grieve in the most familiar, instinctive ways. We can share stories, cry and laugh together over Zoom, but we can’t simply sit in quiet companionship or hold each other when words fail us. After my loss, I ran out of words to share; I couldn’t imagine calling anyone. How was I going to feel connected to others, find comfort and strength in my friends?
People near and far began to send sympathy cards, flowers, snacks, gourmet ice cream. My biological sister couldn’t be at my side as she was when my adoptive father died, but she checked in often and sent me soup and socks. One person gave me handmade jewelry in my favorite colors; another mailed a magnolia tree I could plant in my mother’s memory.
My friends Jasmine and Reese organized a group to record video condolences — a virtual shower of compassion and care — and, with tears rolling down my face, I played and replayed the messages, feeling held in the love of my friends and recognizing a clear invitation to reach out for more support when I was ready.
As it turned out, socially distanced grieving didn’t mean grieving alone — so many people found ways to offer support, as if they knew what I needed even when I didn’t. It occurred to me that most of them hadn’t needed to dig deep in order to understand what I was going through.
“After a trauma, one of the lingering shocks can be the feeling of aloneness that follows,” Juli Fraga, a psychologist, told me. “In this pandemic, that sense of aloneness might be softened because of our collective suffering — everybody needs support right now.”
For many of us, finding emotional support often means turning to long-established networks already built for distance. We may be weary or fearful now, freshly cut off from familiar routines and many forms of in-person support, but there’s still reassurance and solace to be found in distanced fellowship.
“At moments of peak fear and distress, we all think of connection and reaching out to people we love,” said Joy Lieberthal Rho, a social worker and therapist. “It’s part of that mass moment of reckoning in a crisis.”
As the pandemic drags on and our emotional reserves dwindle, we’re still doing our best to care for loved ones we can’t visit, sharing burdens, mourning losses, and celebrating tiny victories in long-distance communion.
Sometimes that means a call, just listening to and spending time with one another. Sometimes it means sharing resources or sending gifts, if we’re lucky enough to be able to do so — as my friend Jess put it, “Buying gifts for people who are going through hard times has been the only good thing this year.”
If you’re like me and have a hard time asking for help or naming what you need — especially now, when everyone you know is struggling — Ms. Rho suggests starting with “just one person who has been consistently good about reaching out” to you. “This gives that person positive feedback” for being such a good friend to you, she says, and perhaps they’ll be motivated to continue, or to let others know you could use extra support. Dr. Fraga says that asking for help can also give others permission to voice their own needs.
When it’s your turn to offer comfort or aid, Martha Crawford, a psychotherapist and licensed social worker, recommends asking yourself what is in your power to do and letting a loved one know that you have the emotional capacity to do it.
“With grief on this massive scale, we move through periods of time when we can function and periods when we can’t,” she said. “Try to honestly recognize where you are — when you have support to lend and when you have support to give — and then let people know where you’re at, and ask where they’re at.” She says this form of emotional resource sharing is in “the spirit of mutual aid.”
“It’s a little harder to make somebody feel they’re held in your care through electronic intermediaries,” Ms. Crawford added. “Maybe there is some pressure to try to offer more active support, suggestions or advice.” But the helping professionals I spoke with also pointed to the intimacy that can take root when we have a bit of physical distance, and at the same time get these powerful glimpses into each other’s homes and daily experiences.
“It can be hard not to meet face-to-face,” said Dr. Fraga, “but virtual meetings give me a new window into people’s lives, letting me actually see some of the things they’ve been talking about.”
At least once a day, you probably hear someone mention pandemic fatigue. The days seem endless, even as weeks fly by, and still there is no return to normalcy. Whatever it was that gave you strength or courage in the early days of the pandemic might be wavering now. Maybe you can’t bounce back so quickly. Maybe you shouldn’t — sometimes you need to stay down, take that extra breath, ask for help before you can figure out how to go on.
Whenever I rise and get back to it — to help my family, to do my job, to support my friends the way they’ve generously supported me — I often think of my mother, the person most responsible for showing me that love can defy distance and be an endless source of strength and resilience.
For decades, I watched her work hard to support us, care for her mother and my father, fight for her own survival and that of others. She believed in me so fiercely that I still feel her love and faith in the active, present tense, even though she is far beyond my reach. It’s that kind of support I want to extend to others now, sharing what strength and nourishment I can, even if I don’t know when we’ll share physical space again.
Covid-19 has created a crisis throughout the world. This crisis has produced a test of leadership. With no good options to combat a novel pathogen, countries were forced to make hard choices about how to respond. Here in the United States, our leaders have failed that test. They have taken a crisis and turned it into a tragedy.
The magnitude of this failure is astonishing. According to the Johns Hopkins Center for Systems Science and Engineering,1 the United States leads the world in Covid-19 cases and in deaths due to the disease, far exceeding the numbers in much larger countries, such as China. The death rate in this country is more than double that of Canada, exceeds that of Japan, a country with a vulnerable and elderly population, by a factor of almost 50, and even dwarfs the rates in lower-middle-income countries, such as Vietnam, by a factor of almost 2000. Covid-19 is an overwhelming challenge, and many factors contribute to its severity. But the one we can control is how we behave. And in the United States we have consistently behaved poorly.
We know that we could have done better. China, faced with the first outbreak, chose strict quarantine and isolation after an initial delay. These measures were severe but effective, essentially eliminating transmission at the point where the outbreak began and reducing the death rate to a reported 3 per million, as compared with more than 500 per million in the United States. Countries that had far more exchange with China, such as Singapore and South Korea, began intensive testing early, along with aggressive contact tracing and appropriate isolation, and have had relatively small outbreaks. And New Zealand has used these same measures, together with its geographic advantages, to come close to eliminating the disease, something that has allowed that country to limit the time of closure and to largely reopen society to a prepandemic level. In general, not only have many democracies done better than the United States, but they have also outperformed us by orders of magnitude.
Why has the United States handled this pandemic so badly? We have failed at almost every step. We had ample warning, but when the disease first arrived, we were incapable of testing effectively and couldn’t provide even the most basic personal protective equipment to health care workers and the general public. And we continue to be way behind the curve in testing. While the absolute numbers of tests have increased substantially, the more useful metric is the number of tests performed per infected person, a rate that puts us far down the international list, below such places as Kazakhstan, Zimbabwe, and Ethiopia, countries that cannot boast the biomedical infrastructure or the manufacturing capacity that we have.2 Moreover, a lack of emphasis on developing capacity has meant that U.S. test results are often long delayed, rendering the results useless for disease control.
Although we tend to focus on technology, most of the interventions that have large effects are not complicated. The United States instituted quarantine and isolation measures late and inconsistently, often without any effort to enforce them, after the disease had spread substantially in many communities. Our rules on social distancing have in many places been lackadaisical at best, with loosening of restrictions long before adequate disease control had been achieved. And in much of the country, people simply don’t wear masks, largely because our leaders have stated outright that masks are political tools rather than effective infection control measures. The government has appropriately invested heavily in vaccine development, but its rhetoric has politicized the development process and led to growing public distrust.
The United States came into this crisis with enormous advantages. Along with tremendous manufacturing capacity, we have a biomedical research system that is the envy of the world. We have enormous expertise in public health, health policy, and basic biology and have consistently been able to turn that expertise into new therapies and preventive measures. And much of that national expertise resides in government institutions. Yet our leaders have largely chosen to ignore and even denigrate experts.
The response of our nation’s leaders has been consistently inadequate. The federal government has largely abandoned disease control to the states. Governors have varied in their responses, not so much by party as by competence. But whatever their competence, governors do not have the tools that Washington controls. Instead of using those tools, the federal government has undermined them. The Centers for Disease Control and Prevention, which was the world’s leading disease response organization, has been eviscerated and has suffered dramatic testing and policy failures. The National Institutes of Health have played a key role in vaccine development but have been excluded from much crucial government decision making. And the Food and Drug Administration has been shamefully politicized,3 appearing to respond to pressure from the administration rather than scientific evidence. Our current leaders have undercut trust in science and in government,4 causing damage that will certainly outlast them. Instead of relying on expertise, the administration has turned to uninformed “opinion leaders” and charlatans who obscure the truth and facilitate the promulgation of outright lies.
Let’s be clear about the cost of not taking even simple measures. An outbreak that has disproportionately affected communities of color has exacerbated the tensions associated with inequality. Many of our children are missing school at critical times in their social and intellectual development. The hard work of health care professionals, who have put their lives on the line, has not been used wisely. Our current leadership takes pride in the economy, but while most of the world has opened up to some extent, the United States still suffers from disease rates that have prevented many businesses from reopening, with a resultant loss of hundreds of billions of dollars and millions of jobs. And more than 200,000 Americans have died. Some deaths from Covid-19 were unavoidable. But, although it is impossible to project the precise number of additional American lives lost because of weak and inappropriate government policies, it is at least in the tens of thousands in a pandemic that has already killed more Americans than any conflict since World War II.
Anyone else who recklessly squandered lives and money in this way would be suffering legal consequences. Our leaders have largely claimed immunity for their actions. But this election gives us the power to render judgment. Reasonable people will certainly disagree about the many political positions taken by candidates. But truth is neither liberal nor conservative. When it comes to the response to the largest public health crisis of our time, our current political leaders have demonstrated that they are dangerously incompetent. We should not abet them and enable the deaths of thousands more Americans by allowing them to keep their jobs.