The Globe Staff uncovers the culture toward death in America compared to around the world and how COVID-19 has shaped the culture of how humans view death.
November 29, 2021
While many Americans view death as the end of life, other cultures around the world believe that life continues after death. Instead of somber funerals, some cultures have lively celebrations.
Africa is full of diverse countries, tribes, cultures and customs, but some beliefs about death are widespread throughout the continent. Ancestors—dead family members who guide their loved ones after death—are an important part of many African cultures. Often in these belief systems, funerals and burials prevent an ancestor from becoming a lost ghost.
Funerals across Africa tend to be spirited and colorful. In Southern Africa, the San people transfer their souls to the spirit world to speak with the dead through a rain dance. For the Igbo tribe of Nigeria, death involves two burials, the second of which is a multiple day celebration featuring music and poetry. Though Ghana is predominantly Christian, just like the US, Ghanaian practices surrounding death greatly differ from American ones. In many Ghanian cultures, traditional funerals are a long and elaborate process. Families of the Ashanti tribe are directly involved with preparing the body of their loved one before burial. Hundreds of people may attend the festivities that follow.
Celebrations of death are also widespread across Central and South America. In some Central American countries, including Nicaragua and Costa Rica, a celebration called a vela is held for the deceased, in which guests spend the night exchanging memories of their loved ones. In Mexico and other parts of Central and South America, families celebrate their ancestors during Day of The Dead. Families visit graves and set up altars called ofrendas, featuring the favorite foods and beverages of their loved ones. Memories of family members are recounted. The holiday is bright, joyful, and often humorous. In Mexico, discussions of death are open and common.
In Mexico, discussions of death are open and common. In the United States, however, death is seen as morbid and taboo.
In the United States, however, death is seen as morbid and taboo. Most families are not intimately involved in the dying process, as loved ones die in hospitals and bodies are prepared by second-hand parties. Though the celebrations of Halloween and Day of the Dead share roots, they are drastically different. Halloween lacks the intimacy and personal connection of Day of the Dead. Instead of remembering loved ones, Americans dress up as monsters and eat candy. In reality, Halloween is not a true celebration of death. The difference between Day of the Dead and Halloween reflects the difference between Mexican and American attitudes toward death. In one culture, death is openly accepted and celebrated. In the other, the topic of death is avoided and ignored. Our inability to face death head-on contributes to our denial and the pain of our loss.
For many people, religion plays an important part in the grieving process. Judaism, a religion that focuses on life, offers a unique perspective on death and mourning. While the topic of death is often treated as “taboo” in American culture, Judaism recognizes death as a natural part of the cycle of life. There are different perspectives within Judaism. Orthodox, Conservative and Reform practices all have distinctions. Judaism encourages individuals to interpret traditions for themselves. Still, core Jewish values guide many practices.
Respect is a very important part of the funeral, the whole sense of respect for the person, the person’s life, and the body itself
— Rabbi Howard Kaplansky, United Hebrew Congregation
In a traditional Jewish funeral, the body is cleansed and wrapped in a plain white shroud. This is so every person is viewed the same in death, no matter their access to financial resources. Bodies are usually buried in a wooden box without nails to allow for natural decomposition and a return to the earth. A rabbi leads the funeral service, and attendants say prayers.
“Respect is a very important part of the funeral, the whole sense of respect for the person, the person’s life, and the body itself,” said Rabbi Howard Kaplansky of United Hebrew Congregation, a Reform synagogue in St. Louis.
Prayer is an important part of the mourning process. The prayer El Malei Rachamim asks God for comfort and support. The Kaddish is another prayer that mourners say. During a typical Shabbat service, the Kaddish is said multiple times, but the Mourner’s Kaddish is said only once. The Mourner’s Kaddish does not actually reference death, or even hint at loss. Instead, it is an affirmation of God and an expression of thankfulness for the gift of being alive.
“Even at a time of great loss and sadness, we still praise God and focus on life,” said Kaplansky. Orthodox Jews may say the Kaddish once every day for 11 months. In one metaphor, each repetition of the Kaddish allows the person being mourned to work their way up another rung on the ladder between Gehenna, or purgatory, and Gan-Eden, the garden of Eden. Even the most evil soul would only spend 11 months in Gehenna before finding their place in paradise. In Judaism, God does not intend to inflict punishment or cause suffering, but instead allows for Rehabilitation.
The afterlife is not the focus of Judaism. Jews focus on the present. A heaven can be created on earth with devotion to “tikkun olam,” repairing the world. Some Jews believe in an afterlife, and some do not. Judaism allows for freedom of interpretation.
“My response to the question of what happens after we die is, I don’t know, but I’m going to try to live my life in the best way that I can,” said Kaplansky. “And if there is a heaven or a hell, I’ll pack a suitcase for it based on how I lived my life.”
Judaism’s focus on life also connects to community. Many traditions exist to help mourners through their loss. Being present at a funeral and providing support to the mourners is seen as a mitzvah, or a good deed. The Jewish value of community support is also present in shiva. Shiva is a period of time after a death, traditionally lasting seven days, when people come to the mourners’ home to support them. Many visitors bring food, especially heavy comfort foods that will help fill the mourners’ emptiness. Visitors make sure that the mourners are eating and taking care of themselves.
“Death is part of the cycle of life, and at a time of loss and mourning, there are customs or rituals that are meant to not only serve as a tribute to the deceased, but really focus on support,” said Kaplansky.
During shiva, mourners may sit on lower stools or chairs so they can be identified. Mourners may also cover all mirrors and reflective surfaces during shiva to prevent vanity and selfish thoughts. Some Jews who have lost a loved one may abstain from entertainment during the period of shiva.
Sheloshim, meaning 30, is a secondary period of mourning time. During this time, many Jews return to work, but some may continue to abstain from entertainment.
The yahrzeit is the one-year anniversary of a death, and a time of remembrance. Memorial candles are lit and prayers are said. Traditionally, mourners visit their loved one’s grave.
Yizkor is a Jewish memorial service that takes place four times a year. While a yahrzeit may be observed privately, Yizkor is a community gathering. Mourners may come together to support one another through their loss. People who have passed away are named and remembered.
“It’s important to remember,” said Kaplansky. “But it’s also very important to move on.”
Jewish mourning periods have limits. Death is not meant to permanently halt the lives of mourners. Rituals and traditions exist to help with the healing process. Jewish views on life and death have been influenced by Jewish history. Though Jews have endured centuries of persecution, Judaism survives today, with life still at its core. “Throughout Jewish history, there have been different kinds of oppression and destruction,” said Kaplansky. “Our response to all that is to focus on life.”
Death is not taboo, it’s something that is a reality that we have to react to.
— Rabbi Howard Kaplansky, United Hebrew Congregation
Though pain and loss may threaten to consume mourners’ lives, Jewish values help mourners see good in the world and heal. In Judaism, life has diversity. There is a time to be born and a time to die, a time for joy and a time for sorrow. It is important to find a balance.
“Looking through a lens of balance is important to living in this world the best way that we can, which is what I believe Judaism teaches us to do,” said Kaplansky.
Many Americans’ views on concepts such as death are influenced by different facets of their identities, such as religion. But for some Americans, perspectives on death are also defined by their home country. The US census estimates that at least 25% of the US population are first or second generation Americans, who come from (or whose parents come from) different cultures, many with different views on death.
“It’s more celebratory. It’s more accepting of the idea that it’s just a passage,” Clayton High School Spanish teacher Teresa Schafer said of the culture around death in Latin America.
Schafer was born and raised in a Catholic family in Peru, and she moved to the United States in 1983. Fascinated with the variety of religions and philosophies she encountered in the United States, she took several classes at Saint Louis University about world religions.
“[The classes] reminded me that all these different religions and views on death – instead of being so opposite, it just reminded me more of how similar we all are as human beings,” Schafer said.
Immigrants often experience jarring differences in the customs, celebrations, and beliefs of their home country and those of their new country, especially in the United States, where strict (if often unspoken) social codes exist. But when something as universal yet personal as death occurs, the American practice of distancing or ignoring the loss can seem inconceivable.
“[In Peru], when people die, they don’t go to a funeral home. The funeral home comes to your house and decorates, and the coffin is there, and people are there 24 hours a day, for two days. You do not leave the deceased alone. It’s a very personal thing.” Schafer said.
When asked whether the United States or Latin America was more accepting of different views on death, Schafer said, “Latin America, absolutely, because even though there some people are ‘pure Catholics’ or ‘pure Protestants’, we live, we coexist with a culture that celebrates different rituals.”
Within Latin America, there is a rich variety of traditions around death. Perhaps best known in America is the Mexican Day of the Dead celebration, in which people go to the graves of their deceased loved ones and remember the lost lives with food and music.
Schafer recalls Peruvian celebrations of Day of the Dead as cleaning cemeteries and going to church, remembering loved ones who had passed on.
Because of Latin America’s history, many traditions and beliefs are a result of both indigenous and European influences. Celebrations such as the Day of the Dead, as it exists in a variety of countries, have roots in the traditions of the Aztecs. The presence of Catholic mass at many Latin American funerals is a reminder of the European influences still present today.
One similarity between the variety of indigenous religions and the Christianity brought over by the Europeans is the idea of an afterlife, and many Latin Americans continue to believe in that idea today.
In many regions of Latin America, the view on death is also influenced by African culture. Started in Cuba, the Santeria combines Yoruban traditions from West Africa with the Roman Catholic practices of Europe, and involves making offerings dictated by leaders specifically ordained in the practice of the Santeria.
While many immigrants find ways to adapt their own practices and views on death in their new country, there remains a cultural divide because of the expected grieving process in America.
“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.
It brought to heart the seriousness of COVID.
— Jay Epstein
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.”
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.”
Witnessing a poor quality death of someone that you care about is a bad thing for the people who are left behind.
— Brian Carpenter, WashU Professor of Psychology
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.
“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.
“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.
They give you typically three days off after a loss, and then you’re supposed to come back and act like everything’s normal.
— Taylor Sedano
“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.
…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
— Andrea Tritinger
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 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.
— Andrea Tritinger
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.
Having someone that you can talk to about those serious things, is instilling coping skills at a younger age, to help you through life.
— Taylor Sedano
“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.
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Ella Cuneo is a senior at CHS and this is her fourth year on the Globe! She is one of the editors-in-chief.