One Day There, Three Weeks Later Gone

“Within a month, we lost our neighbors,” said Jay Epstein, Clayton parent and Lake Forest resident. Charles and Sally Kopman were long-time residents of Lake Forest and friends of the Epstein family. The two families enjoyed a friendly relationship, sharing the occasional dinner, picking up packages when the other family was out of town, bringing over cookies and enjoying neighborly chats during dog walks and yard work. The Kopmans took a particular interest in Epstein’s daughter, CHS sophomore Margot.

“They paid a lot of attention to Margot. She would bring them cookies and do chores for them. They were at her bat mitzvah,” said Epstein.

Just two weeks after the neighborhood progressive dinner, the last normal gathering for many Lake Forest residents, on a Thursday afternoon in late March 2020, Epstein entered the Kopman’s home to check on Charles. Epstein’s wife Deedee had seen him leave in an ambulance earlier in the day. The hospital had sent him home with an ambiguous diagnosis of weakness, as his symptoms were primarily neurological. The Epsteins tended to Charles for several days, helping his wife to ensure that he ate and drank and was safe, mainly from falling.

Eventually, his neurological symptoms worsened, and Epstein decided to send him back to the hospital. “They took him the second time back to the emergency room and he was pretty soon thereafter diagnosed with COVID-19. And died probably four or five days later. He died in the hospital, no friends, no family. One of his daughters came to town but she never, ever saw her dad again,” said Epstein.

His death was a shock to the Epsteins and the wider neighborhood community. The pandemic had just begun. People had yet to realize the death and destruction that were soon to come.

Approximately three weeks later, the Kopmans’ adult daughter alerted Epstein that her mother, Sally, was displaying neurological symptoms and confusion. Epstein called ahead to the hospital to ensure Sally would be admitted and properly cared for; not just sent home just to return a few days later, as had happened with her husband. No visitors were allowed during her hospital stay but her daughter and the Epsteins received updates about her status and care. Sally was nearing discharge after 10 days in the hospital, but died in her sleep the night prior to her scheduled discharge, as preparations were underway for her transition to home care.

“It was very emotionally traumatizing for all of us,” said Epstein. “And it brought to heart the seriousness of COVID.”

How the Pandemic Upended Death

Americans typically avoid death as a topic of conversation, placing it on the same plane as sex, money and religion. However, the pandemic has brought death on a large scale to the forefront of our collective mind, in a way that is nearly impossible to avoid. Millions of Americans have lost close family members and friends to COVID, or other causes, during the pandemic.

“It’s been hard to avoid. So it’s forced people to think about the end of their own lives. People are still uncomfortable with the topic in general but they are a bit more willing to approach it,” said Professor Brian Carpenter, Professor of Psychology at Washington University.

The pandemic has upended the typical end of life processes and circumstances around deaths. Social distancing requirements and hospital visitor restrictions, as well as restrictions on gathering sizes and locations impacted people’s last moments as well as grieving rituals. Many people in hospitals died alone, surrounded only by doctors as nurses, as well as loved ones on Zoom or FaceTime. Funerals were cancelled, postponed and held on Zoom or with limits on the number of participants. Mourners could not embrace, share meals or spend too much time in the same space.

“When people got COVID and died from it, it was not pretty. They were often in the hospital for a long time and were sometimes unconscious when they died. So these were really horrible, uncomfortable, distressing deaths to witness, both for family members but also the staff in the hospital,” said Carpenter.

Epstein also lost his mother in May 2020, and attended her funeral on Zoom. He described the experience as unsatisfying. “Improper goodbyes and not being able to grieve with your family is really difficult. There was no one to sit Shiva (a Jewish death ritual) for my mom, or for Sally and Charles,” said Epstein, “The whole feeling of being in the hospital, only having an iPad to talk to, not having anyone to hold you, not being able to say your last words in person, I think that’s one of the biggest tragedies related to COVID.”

Uncomfortable, Distressing Deaths

Preparing for one’s death ahead of time is one way to ease the discomfort and anxiety for both the person and their family members. Proper end of life care includes the skilled management of physical pain and nausea as well as attention to the person’s psychological and spiritual needs. End of life care teams range beyond just nurses and doctors and can include social workers, chaplains and religious leaders.

Psychological preparation for death can include saying last goodbyes to loved ones, voicing regrets and apologizing. However, a diagnosis of COVID can limit one’s ability to properly prepare for their death, and die peacefully, comfortably and with dignity.

“Part of that preparation (with a COVID patient) was preparing people for the reality that death was going to be uncomfortable. The other element of being prepared is giving people the opportunity to say what’s important to them. To the extent that they could, even if it’s only through technology,” said Carpenter.

“It’s a really challenging time for families,” said Doctor Candice Booth, a Clayton parent and Emergency Medicine Physician at Missouri Baptist Hospital, “I’ve had some times where I realized someone was at the end of their life and made special arrangements to get family members gowned up and in the room, because I felt it was really important to say goodbyes. But in some cases, family members were too scared to come in, so we made other arrangements, setting up a Zoom call.” 

Technology such as Zoom and FaceTime has become crucial in end of life care, connecting families kept apart by social distancing practices.

People had various reactions to pandemic deaths, with some becoming more open and willing to talk about and prepare for deaths. While others became more anxious, fearful and distressed surrounding the pandemic and the increased potential for infection and death. Witnessing an uncomfortable or painful death of a loved one also impacts family members in their grieving process.

“When people witness a difficult, complicated or prolonged death, it puts them at risk for an extreme or elongated grief reaction. Witnessing a poor quality death of someone that you care about is a bad thing for the people who are left behind,” said Carpenter.

One such type of an extreme grief reaction is known as prolonged grief disorder. According to the Washington Post, prolonged grief disorder is characterized by daily intense yearning for the dead, identity confusion, disbelief, emotional pain or numbness and intense loneliness, at least one year after the person’s death. One in ten people who have lost a loved one will be affected by PGD. This disorder was recently added to the DSM, the diagnosis manual for the American Psychiatric Association. Witnessing a sudden or traumatic death puts one at greater risk for developing PGD.

Ways to prevent an extreme grief reaction such as PGD include taking advantage of provided supports, such as bereavement support provided by hospice.

Witnessing a poor quality death also affects the staff who cared for the person. The pandemic has shone a light on the plight of nurses, doctors, housekeeping staff, social workers, health aides and other workers who care for dying patients. “We’ve learned (during the pandemic) how to take care of really sick people. We’ve also learned the importance of caring for the doctors, nurses, chaplains, social workers and other people who are doing the work. We need to cherish them, support them, make sure they’re well paid and have plenty of time off,” said Carpenter.

Life Continues

“I don’t think you ever become numb to it. Each one still affects you personally, seeing the patient and the family,” said Booth. Staff in the ICU can have different experiences, as they can spend days or weeks treating patients and getting to know them and their families prior to their deaths. But staff in Emergency Departments deal with the initial shock for families of patients who die immediately or those who come in very ill.

Particularly at the start of the pandemic, there was also a lot of fear among hospital staff members. They had to put themselves and their families at risk of death from a relatively unknown virus on a daily basis.

The Epstein family contracted COVID in December of 2020. Their previous experience with the Kopmans impacted their emotional responses to the virus. “When we were diagnosed, I think there was a lot of fear. When Margot heard that both her mom and dad and her had COVID, there was a lot of anxiety. Our only prior experience was with our neighbors and their tragic outcome,” said Epstein. 

“It’s definitely been difficult. But I’m very thankful for our staff,” said Booth, “Everyone’s kind of had their moments where you need to lean on somebody and we’ve all been there for each other. Many hospitals, including Missouri Baptist have offered mental health support and resources for their staff during the pandemic.

“Community is a big part of you not feeling isolated. When we had COVID, all of our friends said they would get us anything we needed, go to the store for us. Even if you can’t see anyone, they just leave things on your doorstep,” said Epstein.

One day as she arrived at work, Booth noticed hundreds of pinwheels scattered about the lawn at Missouri Baptist Hospital, to honor all the patients that had been affected by COVID. “It just kind of gave you that mental image of how many people have been affected by this,” said Booth.

“I really wonder if the younger generation will carry the COVID pandemic with them, the way that older people have carried the polio epidemic and other things like that. Will it be a marker, an important milestone in their lives? A big life event that they’ll talk to their kids and grandkids about when they get older?” said Carpenter.

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“When a family comes in, they’re often overwhelmed, they’re sad, they’re in shock,” said Emily MacDonald, funeral director at Berger Memorial Chapel. “And sometimes they’ve been working with individuals who have been sick for quite some time, so they have a weird, it’s kind of hard to explain, but a sense of relief, in the sense that their loved one is no longer suffering.”  

Where grief, shock and relief converge, the funeral process begins. For MacDonald, that process is initiated in the form of a simple email to the family she is working with. 

“I often will send them an email actually just kind of outlining the decisions that need to be made and information that we would need together and discuss,” she explained. After the family has time to assess a basic overview of what the process ahead of them will look like, MacDonald typically meets with them to start planning.

“We talk about service logistics, what the service can look like, where it’s going to be, when it’s going to be, transportation to and from the service rituals and traditions that we will help prepare,” said MacDonald. “We then gather information to inform a death certificate.” She also works out information to include in newspaper notices and helps the family select a casket.

This is where the underlying inequality of the funeral industry begins to emerge. “The greatest variable in any funeral is actually going to be a casket because they range across the board in cost,” said MacDonald. “So if I’m talking to a family, regardless of their socioeconomic background, the cost for our services and the cost for the services provided by the cemetery and the rabbi and others are generally the same. It’s just the difference is really within a casket.” According to the Federal Trade Commission, an average casket costs slightly above $2,000, but prices can reach up to $10,000. MacDonald explained that Berger makes price adjustments for clients facing financial hardship and has worked with Jewish Family Services to develop a “burial fund.” Other efforts to make funerals more accessible and equitable include the Funeral Consumers Alliance, a nonprofit which works to help people make informed decisions and know the rights of funeral industry consumers. Some states also offer direct financial assistance for people who cannot afford to bury a loved one. No statewide assistance is offered in Missouri, but some counties provide assistance to indigent funeral consumers. The Federal Emergency Management Agency (FEMA) has also provided financial assistance for COVID-19 related funeral expenses.

MacDonald explained that there are many cremation service providers in St. Louis who offer inexpensive packages. However, these prices do not include services or spaces to hold services, and families may have to provide their own urns.

When a family is dealing with monetary constraints, it can make planning a funeral even more overwhelming. Even for families who can comfortably afford funeral services, the process is emotionally taxing and unfamiliar. Because families planning funerals are in vulnerable positions, it is the responsibility of the funeral director, as well as the funeral home, to guide people through this process while making it as easy as possible. MacDonald is sensitive to this by sending an overview of costs to her clients ahead of time. 

“I always include an anticipated breakdown of cost,” she said. “I always attach the price list, and then I give them the price list when they’re here as well, because I want people to have a good understanding of what to expect.” Because people are in such a compromised position while planning with funeral homes, there are regulations in place to prevent families from being exploited.

“The Federal Trade Commission and the state of Missouri separately have really stringent, strict laws and penalties for not providing individuals information, 1) as soon as we speak, 2) to take home with them,” said MacDonald. The Federal Trade Commission Funeral Rule requires providers of funeral services to give clients “General Price Lists,” itemized lists of goods and services offered that include prices, descriptions and specific disclosures. These disclosures include important information for consumers, such as their right to select only the services they desire. The funeral industry is also regulated at the state level; Missouri statute 333 establishes licensing requirements and inspection procedures for funeral establishments.

Some individuals try to make it easier on their families after they pass away by choosing a pre-arranged funeral, paid either in full or in installments. There are many ways to plan a funeral in advance, including setting up a trust with a specific funeral home or buying funeral insurance.

Even though funeral homes such as Berger are transparent about cost, funerals in the United States are costly. According to a 2021 report by Self Financial, the average cost of funerals has risen 23% since 2006. Cremation costs have also risen 9% since 2014. On average, dying in the U.S. costs about $19,566, including end-of-life care, funerals and cremations.

“If you’re a working adult, they give you typically three days off after a loss, and then you’re supposed to come back and act like everything’s normal,” said Taylor Sedano, Bereavement Specialist for BJC Hospice. Under both Missouri and national law, employers are not required to provide bereavement leave (paid leave after the death of a loved one) or leave for an employee to attend a funeral. Though many employers provide three days of leave, workers in low-wage jobs are more likely to be denied any leave after a loss.

Death is not only costly to the individuals who experience loved ones’ deaths, but it also affects the economy as a whole. One study published in Proceedings of the National Academy of Sciences found that on average, every COVID-19 death will affect nine people. Across the country, there are minimum-wage employees who are forced to work while struggling with the mental and physical burden of grief. Dying is an industry, just like any other industry that provides goods or services. But unlike cars or hospitality, how it evolves over time will have profound effects on America’s cultural understanding of death and its significance.

Walking into the BJC hospice center, a small golden tree in the front doorway catches your eye. This tree is known to Evelyn’s House patients and family members as “The Hope Tree.” This colorful heart-studded centerpiece is lined with small paper hearts written with messages and wishes to the Evelyn’s House community by the families who attain residency there.

Evelyn’s House is a part of the BJC Healthcare and hospice system that provides emotional, medical, physical, and spiritual care for terminally ill patients of all ages. Evelyn’s House is a home-like setting that provides a holistic approach to the therapy side of medical-care and the aftermath of losing a loved one.

Grieving the loss of a loved one for families can cause emotional, mental, and physical symptoms. Physical symptoms can range from headaches and stomachaches to trouble sleeping. 

“We talk about how grief affects you as a whole. So, a lot of times when you hear the word grief, you think about the emotional aspects. But anyone who’s lost someone significant in their life knows that it can really affect you physically,” said Barnes Jewish/Christian Healthcare hospice bereavement specialist Taylor Sedano.

Dealing with these symptoms, especially for someone who has never gone through a heavy loss, can seem confusing or stressful. Fortunately, there are programs and associations that can help with that healing process, managing the symptoms and paving the way for a more emotionally stable future for those who may be dealing with grief.

Andrea Tritinger, a Social Work Supervisor of Evelyn’s House, said, “The goal of Evelyn’s House [is centered around the fact that] the patients that come here typically have symptoms that are not able to be managed in their house. So maybe they’ve got pain that their nurses aren’t able to get under control, so instead of sending them to a hospital, they are able to come here and it’s just more of a comfortable and calm environment for families. So, it is to help get those symptoms under control so they can have a peaceful end of life.”

Evelyn’s House does not just provide a comfortable home-like environment for their patients, it also provides therapies of all kinds, retreats for grief counseling and grief support for every family that has lost a loved one. The patients’ therapies consist of art, music and communicative sessions with their therapist or social worker. These therapies help focus on the patient’s anxiety and pain and can help with memory making, or just simply be used as a distraction from the world around them. Group therapy can also be provided and they also provide a supportive staff of people, such as Tritinger, who have comforting personas and constantly make you feel at home.

“With any mental health situation or issue it’s better to get it out then to hold it in, so being able to to have opportunities to process that as [the patient is] going through the dying process, and then immediately after in grief as well, it just helps those long-term outcomes, which hopefully reduces depression and long term mental health issues,” said Tritinger.

Tritinger discussed that many times the families of the patients actually want that connection with others that have gone through a similar loss, because it can help them feel that they are not alone. To help form connections, and speak out on personal experiences, Evelyn’s House also holds retreats for those who have lost loved ones due to terminal illness. Tritinger said, “We also offer a camp for kids ages six to twelve, who have lost a loved one, and it’s not just our hospice families; anybody in the community can come. It’s a weekend long camp, and we do a retreat for moms who have lost a loved one as well.” These retreats are a great way for people in the community to view different perspectives of similar experiences, and help verbally process their emotions.

Evelyn’s House also has personal assets, known as “The Legacy Project.” These are small, but meaningful projects that bring out the creativity in the families, to make a story or a meaningful relic of their terminally-ill loved one. This could be a quilt, made of their favorite clothes, a video of their favorite family movie, or just a memorable story about them. The workers of Evelyn’s House all find major pride and accomplishment in the work they do with these projects. Tritinger said regarding the Legacy project as a whole, “Especially when they’re creating that story, you know you can make an impact.” Creating those impacts -no matter the size- all around helps patients grieve and come to terms with the death, and aftermath of losing a loved one.

Evelyn’s House and Barnes Jewish Hospital/Children’s Hospital (BJC) provide grief support for the families after they’ve lost a loved one for around 13 months after they’ve passed. Through this support, Evelyn’s House will send you pamphlets to help look at the statistics of grieving  and the act of dying, to help make more scientific sense of what you’re going through.

Within the pamphlets is a section on “The 5 Dimensions.” These five dimensions are presented in a diagram consisting of five main factors: spiritual, relational, emotional, physical and mental. Regarding the five dimensions, Tritinger said, “In grief we often think of the emotions that come along with [it], but then when you look at the diagram it’s like overlapping circles. So, you realize that the emotion which impacts the physical which impacts the mental, is all intertwined, and you have to find ways to heal in all of these different areas.”

In addition to the physical factor of grief, PGD, known otherwise, as prolonged grief disorder, is a newly designated disorder similar to “complicated grief.” Its effects are quite similar to that of PTSD, and depression. Some treatments looking into the cure for it are considering psychotherapy, antidepressants, and grief support groups, “especially when they involve mourners with similar grief stories,” stated the Washington Post on the recognition of Prolonged grief disorder as an official diagnosis. These treatments could be similar to that of what Evelyn’s House is aiming to achieve- a connected, safe space where any grieving person can share their experiences and feelings.

The pamphlets also offer quotes from people who have experienced loss and have gone through the BJC Hospice care experience.

“We’ve got quotes in there too from some of our family members that we have supported in bereavement before, just talking about their experience with grief. I think it really helps people to hear from others that have gone through it,” said Tritinger. 

These different healing processes, therapies and supports, along with grief support provided by BJC and Evelyn’s House, all assist to help deal with the un-navigated terrain of death and the symptoms that grieving may cause.

For many people, the grieving process is a journey. There is no right or wrong way to grieve and the impact of death can affect people for the rest of their lives. This is echoed by BJC, who urge their patients to remember that each of their grieving processes will be different, due to their unique relationships with the deceased. 

The culture surrounding death in the United States pushes the idea to “just get over it” and move on with life. With many people only being able to take three or four days off of work after the death of a loved one, the timeline for grief can be shortened. However, BJC emphasizes that there is no timeline or universal set of stages for grief. Their message stresses patience with yourself and taking the time that you need to grieve.

Although each person’s journey is different, many people try to compare their situations to others.

“I find a lot of the people I talk to who have lost a loved one try to compare those situations. Like ‘I’ve had time to prepare,’ ‘I got to talk to them about it’ ‘oh, well you know, that’s better than something that could have happened suddenly like a heart attack or car accident.’ But really, to me, I don’t think it’s ever helpful to compare your route to somebody else’s,” said Sedano.

Grief is not only different for each situation but also for each age group. For children, grief can look and feel extremely different. Many children are not fully emotionally mature when they first experience grief. These feelings can be completely different for them than they are for adults going through the same loss.

At Evelyn’s House, there are many different resources provided specifically for children who have lost a loved one. “With kids in particular, we use a lot of books to help explain what’s happening… We have picture books that talk about maintaining a connection with someone even when they are gone, and knowing that they will always be in your heart,” said Tritinger.

For kids, communication is key. Having open discussions surrounding death can help normalize the emotions that they are feeling. Continuing to view conversations about death as taboo is harmful for children, and can invalidate the grieving process. Many of these discussions start with parents or other family members.

“We do a lot of education with the parents to help normalize that experience and tell them that it actually is better if they’re involved, and that it’s better if they know upfront what’s happening, and have a chance to ask those questions, because kids pick up on things. And usually the stories they make up in their heads are sometimes worse than reality,” said Titinger.

Body language is also an important factor for kids when it comes to grief. “If young kids don’t have the words to express themselves, a lot of the time it comes out when they play, it comes out in their attachment issues,” said Sedano. “Are they starting to distance themselves? Are they being more clingy? By talking and offering space, it helps people process what’s going on.”

At both BJC and Evelyn’s House, having those specific resources and opportunities for kids is crucial in the grieving process. Creating safe spaces for open communication between adults will help kids understand the impact of death and is a way for them to experience different emotions in a healthy environment.

“Sometimes the more that you keep it in, the stories that you are creating in your head and are spinning around and around in your own thoughts, make it worse than when you speak it out loud, and are able to process it,” said Tritinger.

One of the most highlighted aspects of coping with the death of a loved one is being able to have conversations. At BJC hospice they urge bereaved people to “find someone to talk with who will accept you wherever you are in the grief process.”

“It makes it a little less scary when you can say it out loud to somebody else- especially to someone that has some training, like a social worker or a chaplain, where whatever you say they are going to be this non-judgemental and open listener,” said Tritinger.

While it is clear talking through grief is beneficial, our society often shys away from those conversations. When grieving, people often become trapped in a negative spiral of thoughts which can become harmful to their mental health and overall daily life. Being able to discuss these ideas allows them to process the thoughts before they become damaging. While the grieving process is challenging in any manner, if we can start conversations surrounding death and grief, when it comes time to experience those things ourselves, the grieving process and being able to talk about it will be easier.

“I do think that that’s a huge problem with our society- the fact that we don’t talk about death and grief. People, I feel like, then struggle when they’re going through it because it’s hard to talk about,” said Sedano.

We start this through having tough conversations at young ages. Many times, children will experience the death of a grandparent or a loved one during the time they are still reaching emotional maturity. If we are able to converse about feelings and demonstrate the value of talking through them, the message will pass through generations.

“We do a lot of education with the parents to help normalize that experience and tell them that it actually is better if they’re involved, and that it’s better if they know upfront what’s happening, and have a chance to ask those questions,” said Titinger.

Grieving the loss of a loved one is never an easy subject to approach but if we start forming constructive conversations now, it will only become easier. 

Similar to how grief manifests in a variety of ways, it also stems from many different things. Over the past 18 months, we have experienced a variety of losses due to the COVID-19 pandemic. Whether that is the loss of a loved one, better education, or experiences in general, everyone has something to grieve.