Doctors facing death may be less likely to seek surgery or visit the intensive-care unit during the last six months of their lives when compared to non-clinicians. They are also less likely to ultimately die in a hospital, according to studies posted Tuesday in JAMA that looked at use of end-of-life services.
“Actual experience with hospital deaths may differentially motivate physicians to avoid them,” the authors of one report wrote. Physicians may also opt for less rigorous care, because of their “knowledge of its burdens and futility,” the researchers added.
Policy surrounding end-of-life care has been highly politicized in recent years. Physicians have argued for Medicare to support conversations about the pros and cons of end-of-life treatments. Opponents on the other hand feared this could result in so-called “death panels,” and care decisions based on financial concerns.
Last fall, the CMS moved forward with plans to create distinct Medicare billing codes and rates for end-of-life care planning. The policy was welcomed by physicians, who said it would allow them more opportunity to have conversations about end of life as part of yearly checkups.
While medical advancements have helped people to live longer, they have also led to increased demand for end-of-life care and associated costs. By 2050, the population of people age 65 and over is projected to be 83.7 million, almost double that of 2012, in part due to aging baby boomers. The population of people living to be age 80 and older is projected to reach 30.9 million, according to the U.S. Census Bureau (PDF).
Also, hospice usage among Medicare fee-for-service patients has been growing. Rates nearly doubled from 26% in 2002 to 47% in 2012, according to a 2015 report from the Medicare Payment Advisory Commission (PDF). Spending on hospice care also rose from just under $1 billion to $3.4 billion during that time period.
The Jan. 19 issue of JAMA delves into a number of studies, commentary and viewpoints on death and dying in this current environment. In one commentary, surgeon Dr. Atul Gawande of Boston’s Brigham and Women’s Hospital calls the picture of care at the end of life “disturbing.” Holding palliative care consultation and end-of-life discussions as a last resort is “incorrect and harmful,” he wrote.
End-of-life care must consider both how much treatment is needed and balance that with the quality of life it provides to the patient. Given their knowledge of healthcare, two studies specifically aimed to examine the intensity of treatments chosen by doctors nearing death, compared with members of the general population.
One analysis looks at records of Medicare beneficiaries age 66 and older who died between 2004 and 2011 in Massachusetts, Michigan, Utah and Vermont. Death records were used to obtain education and occupation status so researchers could differentiate physicians’ end-of-life choices from those of the general population.
The study found that in the last six months of life, on average about 25% of a total 2,376 physicians who died had surgery and 26% were admitted to the ICU. That’s compared with just over 27% of the general population (159,255) of patients. On average, 32% of the general population died in a hospital; less than 28% of physicians did. The study was conducted by researchers from Brigham and Women’s Hospital; the Mayo Clinic in Rochester, Minn.; and Weill Cornell Medicine, New York.
The other analysis used U.S. Census Bureau mortality survey data and the National Death Index to look at individuals between ages 30 and 98 who died between 1979 and 2011. Physicians and health professionals such as dentists, nurses and pharmacists were less likely to die in a hospital compared with the general population.
The authors of that report were from the New York University School of Medicine, the U.S. Census Bureau and the National Cancer Institute.
Both studies say familiarity with healthcare and greater financial resources may be associated with lower likelihood of aggressive end-of-life care. Elderly clinicians may have the financial means to pay for other options, such as palliative care or having a skilled nurse at home, the authors say.
During a car ride, Peter brought up to his two twentysomethings what his end-of-life wishes would be: No heroic measures, because he wouldn’t want to suffer and wouldn’t want his family to endure it. One of the boys took this in stride, but the other became very upset, asking: “Why are you talking about this? It’s horrible that you’re so calm about death.”
Death comes to us all, but in the 21st century, it comes later than ever for most people. Because of medical advances, life expectancy has stretched to record highs, and in the United States and other countries most people can expect to live into their 70s or 80s. Perhaps for this reason, we generally prefer to ignore death and avoid talking about it, even when we’re in our 60s or older. And our young-adult children, certain of their own immortality, may also prefer to think of their parents as living forever. Bringing up our mortality may provide a rude awakening to grown children of any age.
But we ignore it at our peril, or rather, at the peril of those we love. They may not want to hear us talk about the inevitable visit from the Grim Reaper, but if we neglect the responsibility to prepare for our death — and to prepare them for it — we do them a disservice and leave them with a stressful mess when the time comes. That’s a legacy few of us would wish.
So, here are three crucial issues to make sure you address and discuss:
1. Make a Will
You need to have a will, and once you do you need to make sure your loved ones know about it. Because we tend to prefer to think of death as many years away no matter what age we are, many of us fail to fulfill the basic responsibility of making a will. Various surveys indicate that about 50 percent of American adults have not had one drafted. The percent who have made a will rises with age, but even among 55- to 64-year-olds, 40 percent have no will.
Here’s the problem with that: If you die without a will, the state takes over your estate and makes the decisions about who gets what. Who would want that?
So, no excuses: If you haven’t prepared a will yet, do it as soon as you’re done reading this post! There are many inexpensive online options or you can hire anestate planning attorney if your estate is complex or you’d like the assurance that all the legal steps have been taken correctly.
2. Make Funeral Plans
Figure out plans for your funeral and burial or cremation and make sure family members know what ,and where, the plans are. We’re not crazy about talking about this aspect of death, either, but again, wouldn’t you rather decide on this now, rather than leaving it to your grieving family members to handle hastily after your death? You may find consolation, too, in the thought that the post-death commemoration will be done as you would have wished, even though it is a party you will not be able to attend.
3. Make Your End-of-Life Plan
You also should come up with your end-of-life plan and make sure your loved ones know about it. Medical interventions are extremely effective at keeping us alive at the end of life, even after any prospect of restoring us to consciousness, much less good health, has passed. People vary in how they view this issue, from those who want all possible steps to be taken to those who would prefer not to prolong the inevitable.
Ask your doctor how to make an “advance directive” that will contain your instructions or look up the instructions online from a reputable source like AARP or state government websites (each state has its own laws concerning end-of-life care).
Don’t assume your loved ones will know what to do; they probably won’t, and you don’t want them to have to make those decisions amid the stress and sadness of losing you.
Difficult as these conversations and plans may be, for your children’s sake and for your own peace of mind, discuss them now, while you are lucid and healthy. Your children may not thank you today, but they will appreciate the guidance when the time comes. That’s one last gift of love you can give them after you’re gone.
Funeral biscuits, a Los Angelitos celebration, a cemetery picnic
Our relationship with food is almost as complicated as the one we have with death. Food can bring comfort, be tied to feelings of guilt or pleasure, and can evoke memories and feelings as powerful as any song. It’s no wonder that throughout history and across cultures, people have used food to help honor loved ones who have died. Here are some ways in which it’s been done.
1. Dumb Supper
During this feast — thought by some scholars to be a precursor to modern Halloween — a table is laid out all in black, with places for both the living and the dead. No one speaks to allow for communion with the dead. Guests bring with them a letter written to a loved one who has passed. When the meal is over the unread letters are burned and one by one the messages within are thought to be carried into the spirit world. Believed to have roots in ancient Celtic tradition, the dumb supper was brought to Appalachia by American settlers. Some living in the region still hold the suppers. It is also observed on Samhain, one of the four Gaelic seasonal festivals, by Pagans and Wiccans.
2. Telling the Bees
One old English custom also practiced in America in the early 19th century — and a risky one, to be sure — involved going out to the beehive to deliver the news that a family member had died. The messenger would tap on the hive and whisper, “Little Brownies, your mistress is dead.” Families would attach an invitation to the funeral on the hive and bring food from the funeral feast to the bees. This was a way to show gratitude and respect for the bees and their gifts of honey, beeswax and pollination. Fail to do so, and you would risk offending the bees, which might choose to move on to a more appreciative family.
3. Fave dei Morti (Beans of the Dead)
During ancient Roman times, the souls of ancestors were thought to reside in fava beans. At Roman wedding feasts, beans were presented to the bride and groom, who would eat them in hopes of attracting the souls of male ancestors to carry on the family bloodline. (Eating beans on your wedding day — that’s risky in a different way.) As a bonus, beans were also believed to ward off ghosts and vampires, who were easily tricked into thinking the beans were living people. And on All Souls Day in Italy, it is common to consume bean-shaped cookies, or fave del morti. There are many different variations, but the most popular resembles a macaroon-like cake in appearance, but with a rich, buttery texture and sweet almond flavor. More traditional versions are shaped like kidney beans and flavored with almond flour and extract. Here’s a recipe.
4. Obon Figures
Obon is a series of festival days in Japan when the souls of the departed are thought to visit their living relatives. Horses and cow figurines are made from vegetables placed on altars. It is believed that the spirits of the visiting ancestors ride the animals between worlds of the living and the dead.
5. Funeral Biscuits
Funeral biscuits first appeared in 1600s Europe, and were also commonplace up until the early 1900s in America. They were sometimes taken door-to-door and served as a funeral invitation or handed out as a keepsake after the funeral. According to Barts Pathology Museum’s curator Carla Valentine, funeral biscuits were wrapped in a paper that bore a poem or prayer with the name of the deceased, then sealed with black wax and stamped with a skull or hourglass. Should you want to make a batch, here’s a recipe.
6. Lemons
In Switzerland, male mourners would wrap a lemon in a handkerchief and place it into their hat. The hat would be carried under the left arm for the duration of the funeral. At the end of the service, the lemons were placed on the grave to symbolize the “sharpness” of their grief.
7. Los Angelitos
During Mexico’s Days of the Dead, a sacred observance when spirits of deceased family members are believed to return to the earth for a family reunion with the living, one day is set aside to welcome the spirits of children, or Los Angelitos (The Little Angels). Altars are decorated, and food is offered up in miniature portions and served on tiny plates, often with a little glass of milk.
8. Journey Cakes
A staple of cuisine in the American south is a little corn cake, known as a Johnny Cake. The term “Johnny” was derived from the corn cakes’ original use as “Journey Cakes,” among some African tribes. They were placed in coffins to provide sustenance for the deceased during their long journey to the afterlife.
9. Parsley
After ancient Greeks dedicated this herb to the goddess Persephone, who reigns over the land of the dead, it became a staple during funeral rites. Parsley was planted over graves and athletes donned crowns of parsley during Funeral Games. The games, depicted in the Iliad, were played in the deceased’s honor and are recognized as the precursor to the Olympics. They included chariot races, wrestling, boxing, discus throwing and running.
10. Cemetery Picnics
During the Victorian era when cemeteries were cultivated as parks and gardens, people came to enjoy a day of leisure, to partake of a meal with loved ones no longer with them or even dine on the family’s prepaid plot. In America, the practice took on a more practical purpose: when communities would come together to help clean and maintain the cemetery grounds. Graves would be tended to, trees and flowers planted, and repairs made. Once the work was done, families would set out their potluck dishes and share in a communal meal.
Jane Faller is embraced by her longtime friend Deb Anthes after she changed Faller’s arm bandage on Oct. 1 in Republic, Wash. Injured in a fall, Faller’s arm required daily care from Deb, who would visit her as Jane’s husband, Bob Faller, lay in hospice care.
Bob Faller died after a day of fighting and struggling. Naked and fierce, gripped by death’s delirium, he rolled on the floor tearing paper into tiny shreds. He tried to flush his pants down the toilet.
Jane, his wife of 58 years, was alone in their rural Republic house, terrified. Helpless.
When a new day dawned, she called a hospice nurse, who told Jane to increase her husband’s morphine dose to every two hours. Bob eventually settled, slept, and slowly let his body shut down.
Longtime friend Steve Anthes was with Jane as Bob, 79, took his final breath. It was Oct. 19, nearly 18 months after Bob was diagnosed with throat cancer, 18 months of dying slowly in the forests far away from hospitals, tubes and machines. It was the ending he chose.
Now a new struggle begins for Jane. Can this 77-year-old woman live alone in the winter in remote Ferry County with little money and medical bills arriving daily?
A nondescript box containing the ashes of Bob Faller sits atop a hutch he built by hand in his earlier years. “There’s pieces of furniture he built all over the country,” Jane said.
Relief brings feelings of guilt
“It’s quiet now,” Jane said shortly after her husband’s death. Her voice was strong but soft over the phone, the relief evident.
Yet within an hour, her house filled with people and the chaos of dying’s aftermath. The coroner, friends bearing containers of food, phone calls, decisions.
By 9 p.m., Jane sat in near-darkness on her couch, alone. Murphy the dog slept on the floor near her feet. Bob’s hospital bed was around the corner, empty.
“I feel guilty at feeling so relieved,” she said. “I’m really going to sleep tonight.”
Three months later, Bob’s ashes are in a gray plastic box on a beautiful wooden shelf that he crafted with his own hands years ago. Jane carefully removed the lid, exposing a plastic bag of ash. She put her nose near the bag and took a big sniff. She shrugged. At first she talked to him a lot, lit candles. Not so much now.
Jane’s unsure what she will do with the ashes, other than eventually spread them somewhere in nature. It doesn’t matter right now as snow falls outside the window and each day presents more pressing problems and challenges.
Two weeks ago the weather warmed and snow slid from the roof, burying the deck so she couldn’t open the door. She called for help.
A few weeks before that, the ancient hot water heater leaked at least 25 gallons onto the floor and into the crawl space under the house. She called the local hardware store for the name of a plumber, who inspected the damage and asked for a $400 check to buy a new heater and supplies. The man was gone several hours, long into the evening; Jane panicked. At one point she held her cramping stomach, wrought with stress. But he eventually returned and by 9:30 p.m. had the tank installed and working. She paid another $125 in labor costs and then had to buy a new faucet for the sink. Her hand shook as she wrote the check.
After visiting her daughter in Issaquah, Washington, for Thanksgiving, she returned home and turned on the kitchen light. It crashed from the ceiling.
Jane Faller dons a coat in her mudroom containing canned goods on Wednesday. Everywhere she looks, she sees reminders of her late husband. Jane and Bob canned the goods last summer and they remain stored on a shelf he built for them next to a collection of his favorite hats.
Cumulative stress taking its toll
Jane knew living alone would be challenging, but she wasn’t prepared for the reality of it.
A year of stresses have snowballed: Bob’s illness and mental highs and lows. The nasty fall while walking her dog that turned into a three-hour ambulance ride and a weeklong stay in a Spokane hospital. The missed time with her dying husband because of her hospitalization. The nearby forests that erupted in wildfires this summer, the same week Bob started hospice care, forcing them to prepare to evacuate.
Now there’s snow and ice and long, dreary days. After spending months with her arm immobilized in a brace and then in physical therapy, Jane’s arm and hand still hurt. The scars are purple and angry. Her fingers ache.
Jane is timid about walking, although she used to hike miles a day in all weather. She hasn’t resumed her yoga practice. Her legs and feet are achy.
“She’s keeping a good face on it,” said Cherie Gorton of Rural Resources, who checks on Jane at least weekly and recently sat with Jane as she opened piles of medical bills. “I think it’s to the point where she probably needs to get out more. Accept invitations. But I know that is really hard to do.”
Gorton called Jane’s daughter in Issaquah, Cat Kelley, to see if she could help her mother make sense of the mounting medical bills from the hospital stay and ambulance ride. Jane has Medicare, but that only covers a percentage of the bills. She has a few too many dollars in her savings account to qualify for Medicaid. Jane and Bob took out a reverse mortgage that covers their mortgage payment, and she receives Social Security. Her son in North Carolina recently created a GoFundMe account to ask people for donations.
The financial woes weigh heavy on Jane. She doesn’t like owing people. Her kids want her to wait for all the bills to arrive so she knows how much she owes. Then they will figure out a plan.
“It makes me really upset,” Jane said, after a recent trip to the mailbox, which most always contains a bill. “It’s horrible.”
On Oct. 20, the day following Bob’s death, daughter Cat Kelley holds Jane’s healing arm as the two go for a walk on the Fallers’ Republic, Wash., property.
Once estranged, the kids have visited their mom
Jane and Bob chose an adventurous, nomadic life at the cost of not having more than a few thousand dollars in savings. They never thought about getting old, getting sick or having medical expenses.
Yet Jane doesn’t regret their independent lifestyle and her husband’s dreamy, back-to-the-land mentality.
Kelley, Jane’s daughter, said her mom recently told her that’s she’s trying to remember only the good things about her life with Bob.
“That will be stuck in my mind forever,” Kelley said. “I like it.”
The Fallers’ romance with nature, however, hasn’t been embraced by their four living children.
“That’s how she wants to live,” Kelley said recently. “She has something in her that thrives on that.”
All the children have rebelled against their parents’ hippie lifestyle. In subtle ways, they have all alluded to the fact that having Bob as their father wasn’t easy. He was gruff, demanding.
Today all the Faller children are financially conservative, have stable, traditional jobs and live in large houses in the suburbs. They drive nice cars and buy material things.
Kelley, an attorney who no longer practices, proudly has three bathrooms in a big house. It has a generator so she is never without electricity. She said she will never again live like a squatter, as she believes the family did when they homesteaded in Canada and lived in a shack without running water or a toilet and where her mom cooked over an open fire.
The result was something of an estrangement between the children and Bob, and by association, Jane.
Since Bob’s death, three of the children have reconnected, however, jointly visiting their mom in November to help her prepare for winter and sort through Bob’s possessions. Kelley said it’s relieved a lot of family tension.
Before Bob died, one of his grandsons, Bobby, came for a rare visit, to say goodbye and make peace. Afterward, Bob would talk about the visit until his voice gave out. He reiterated the importance of family, even when people don’t agree and view the world differently. Afterward, Bob felt energized, somehow released from his burdens. Perhaps it was that connection he needed, proof that the Faller tenacity lives on.
With that same tenacity, Jane is reaching deep into her adventurous soul and said she intends to stay put on her beloved land. She looks through seed catalogs by the wood stove. Friends are plenty, checking on her, plowing the driveway, helping in any way she needs. This is home.
“I’m staying as long as I can,” she said with her girlish giggle. “We’ll see what happens.”
Jane Faller eats dinner by herself as snow settles outside her home in Republic, Wash., on Tuesday. Her children worry about her making it through the winter, but her friends Steve and Deb Anthes regularly check in on her, and a neighbor plows her driveway. Still, the solitude can be unrelenting. “It’s an empty home,” she said.
The last time I saw my aunt Pat was at a party on her back deck on a sticky summer afternoon when it seemed like everything was fine. She wanted a party for her birthday and we gave it to her, flying from all corners of the country, knowing it might be her last. She wore her best wig—a smart gray bob—and smiled like there was nothing to be sad about. It didn’t really seem like she was dying.
She’d been in a standoff with cancer for years, but it swiftly took her a few months later, and I found myself again halfway across the country, standing in her home, looking at the spare belongings of a woman who’d lived for years looking over her shoulder, knowing death was close by.
If there was jewelry, I didn’t want it. If there were heirlooms, I didn’t ask for them. Instead, I took a cassette tape—green plastic, with a handwritten label that read: “Nixon’s resignation. SAVE!” I also took a copy of the April 1972 issue of Cosmopolitan magazine, the edition containing Burt Reynolds’ famous bearskin rug centerfold. More than anything else, these things reminded me of my aunt: funny, bookish, smart. You’d never know these are some of my most prized possessions.
If I could cherish an old cassette tape and a dog-eared copy of a magazine, I wondered what other people had saved of the people they loved. What I found was that in death, what we want most aren’t the heirlooms or the valuables, but the things that help us remember our loved ones for exactly who they were.
Merrilee
My grandma had a lot of fancy statues, trinkets, and jewelry. When she passed away, I only asked for two things of hers: this toad magnet and a “naughty” light switch cover.
She was really, really funny, and the magnet was just another funny thing of hers. She always played pranks on my aunts and uncles when they were teenagers and she had this huge, wonderful, cackling laugh. She always bought us funny cards—never sappy ones—for our birthdays and she had a light switch cover in one of her spare bedrooms that was a flasher. You know, a naked dude in a trench coat.
I come from a big Italian family and every Sunday growing up, all the local relatives would go to my grandparents’ house for dinner. That toad magnet was on the fridge at grandma and grandpa’s as long as I can remember and now it reminds me of those Sunday dinners and being a kid. My grandparents had a huge yard with a swing set, big raspberry bushes, a jungle gym, a vegetable garden, a flower garden, and an in-ground swimming pool. More fun times were had at that house than I can count. I keep it on my fridge, so I see it every day.
KENDRA
The molar is from my dog Rose; the little one is from my dog Hannah. I also kept a lock of hair from my horse I had as a child. I wanted to keep the teeth because after they die, you either bury them or have them cremated, which leaves you with an unrecognizable lump of ash that you can’t touch or hold. I wanted to keep the teeth because I will always have a little piece of them… even if it’s a gross tooth.
Kevin
My youngest sister’s body was found ten years ago, on the day dedicated to Our Lady of Sorrows. She died by suicide. She became a psych nurse in order to help others who, like her, struggled with depression and the off-kilter life as someone bipolar.
When my brother called with the news, I drove 2,000 miles non-stop as fast as I could. After the wake and the funeral and discussing what best to do for her two sons, we turned to cleaning out her house. I drove home with two boxes of the family china and other mementos. They have remained in the boxes on my front porch for the last ten years. The loss has been that hard to accept.
James
My grandmother was always a tremendous positive force in my life. I watched her fight cancer for 20 years and somehow she always managed to have a positive outlook. She could be in tremendous pain and discomfort and still look at me with a smile as she made fun of her misfortune.
I was probably somewhere between six and eight when she fell and knocked her teeth out. I don’t remember the specifics of the story, but I know she lost seven teeth and broke her jaw in several places. I vaguely remember her trying to set me at ease by smiling and trying to joke around with a mouth full of bloody cotton the night it happened.
Her last two weeks of life were spent in the hospital. I stayed by her side as much as I could, sleeping at the hospital and hanging around every day. She died late at night with me holding her hand. We sat alone together like that for about an hour before I alerted the hospital staff.
My mother and I flew to Maine the fall after her death, to spread her ashes at Pemaquid Point. It was her favorite spot as a child. We hung around the lighthouse all day goofing around, taking photos, making fun of people, trying to find a discreet spot to spread her ashes. We finally found a really cool spot to the east of the lighthouse on top of some boulders below an apparently forgotten rusty mermaid statue overgrown with weeds. I remember being surprised that the ashes were heavy. I expected them to scatter in the wind but they kind of fell onto the rocks below in clumps.
Then her bridge bounced off of a few rocks making a very distinctive clink upon hitting each one. My mom and I gave each other the what the fuck was that? look, and I jumped down and immediately started sifting through the dense ash. We knew what it was immediately.
There was still enough shape to it that you could clearly make out the teeth. We both laughed as I shook the rest of my grandma’s remains off of my hands. It wouldn’t have occurred to me not to keep it.
I generally keep it on an old vintage trunk that I use as a nightstand next to my bed, but sometimes I’ll stuff it my pocket at random. I always bring it with me when I travel. I don’t know why I keep it. It’s just as valuable a treasure as the other trinkets I’ve collected over the years—rings, old post-punk pins, a few tie clips, a trilobite or two—and all that’s left of my grandmother.
Joe
My grandfather owned a little corner grocery store in North Jersey, in the town of Roselle. It was called Leo and Fred’s, but when the stock market crashed, Fred killed himself. Leo was the butcher, and my father bought Fred’s half and ran the shop. There was a bar in the back too, so the regulars could have a drink—at a grocery store, because why not?
One of my grandfather’s regular customers worked on Wall Street, and this guy taught my grandfather how to invest in the stock market. And so my grandfather started doing that and would look for other ways to invest—one of which was when coins went down to being mostly made with nickel, in the 60s, I think. Before that there were actually a lot of silver in American coins, which of course has value; nickel does not. So my grandfather would save all the half-dollars and dollars from before a certain date, the silver ones. I have a half-dollar of his, which I often carry in my pocket.
Sheri
After my dad died, my mom doused a polyester shirt in his cologne—he wore a lot—and sealed it in a plastic bag. I’ve sort of wanted to get rid of it because whatever my dad wore is super strong and kind of gives me a headache. One time I took him to a bluegrass concert and the people in front of us got up and moved! It was sweet of my mom, but also kind of weird. It isn’t the memento of him I would have saved for myself.
My dad’s library card, on the other hand, means a lot to me given my profession—I’m a librarian. My dad was the one who first took me to the library, on his motorcycle, with a giant helmet balanced on my three-year-old skull. He was totally blue collar, worked as a plumber, but really believed in libraries and had a current library card for most of his life.
I also have his map stash, which is this giant leather-like pouch that he kept behind the seat of his truck. It still smells faintly of cigar. I love that one of the maps dates back to a year after I was born, and another he’s traced colored routes all over. The lines could mean anything.
When he conducted the funerals, Tom Bonderenko tells me, he always wore his priestly garments and white stole. Even when no one showed up for the graveside service.
“It was important to show dignity and respect,” Tom says. He taps the coffee cup in his lap nervously. “I’m sorry,” he says. He clears his throat but it doesn’t keep his eyes from welling up. “No one has asked me about this in a really long time.”
We are sitting in his office at Moveable Feast, the Baltimore meal delivery agency for those with life-threatening illnesses, where Tom has served as director for the last eight years. His office is spacious and cheerful, but this conversation is a difficult one. He had discreetly closed his office door behind me when I arrived.
When Moveable Feast was founded in 1989 to deliver meals to home-bound AIDS patients, Tom was engaged in a different, more literal ministry to the disenfranchised. He was a priest staffing a homeless shelter for Catholic Charities of Baltimore. It was there he met someone with AIDS for the first time.
“A young man came to the door of the emergency shelter, sometime in 1987,” he says. “He was covered in black marks. Lesions, you know. Everywhere. He said he needed to clean up before his first doctor appointment the next day.”
Tom had grown up in New York City, and as a gay man he had known people who died very suddenly, as far back as the early 1980’s. But he had never stood face to face with someone so ill with the dreaded disease.
I couldn’t help but ask Tom how he felt, meeting that person.
Tom stares out his office window, and his eyes are so beautiful, romantically blue, framed with creases of worry. The eyes of a priest. He turns back to me with an answer. “Here was a young man who was going to find out from a doctor the next day that he had AIDS,” he manages. He starts tapping his coffee cup again, and he bows his head reverently. “And he was about to be told that he was going to die.”
Tom never saw the young man again.
People with AIDS became more common at the shelter before long. Tom got to know the regulars, and they began to ask him to perform their funeral services.
“They just wanted to know they would be buried,” he says quietly. “They didn’t want or need anything religious. Most of them were estranged from their families, drug abuse, that sort of thing. I think they were embarrassed to reach out to relatives. Sometimes, when they died we would find a member of the family to come, but usually it was just me and the departed at the gravesite.”
The burials were performed at unmarked graves in a lonely section of Baltimore Cemetery. The caskets were as charity required, simple wooden boxes, and they always contained a body. The funeral home would not cremate someone who died from AIDS because they were afraid of poisoning the air.
“I would always conduct the service out loud,” says Tom, now sharing the sacred details. “I would speak about the departed, and say what I knew of them, about where they were from. And then I would ask if anyone present had been harmed by the departed…”
I imagined Tom, in his vestments and alone in a forgotten graveyard, asking intimate questions out loud to the grass and the trees and the disinterested silence. “I would say that if the departed had harmed anyone,” he goes on, “for that person to please forgive them.” Tom’s voice falters. “And then I would ask the departed to forgive, too. I would tell them, ‘you’re on the other side now. Let it go.’”
Tom’s office becomes very still. I feel as if I’m holding my breath.
“I think they just didn’t want to be alone,” Tom says, and now he looks at me without regard for his tears. “We don’t do this alone.”
Because of you, I think to myself. They weren’t alone because of you, Tom.
“I’m so sorry,” he says, again, wiping his face. “I haven’t talked about this in so long.” He considers the faraway scene he has conjured, his graveside questions to no one, and then adds, “It was the most important, meaningful thing I have ever done.”
I wonder aloud if the experience bolstered his religious faith or challenged it instead. He looks surprised by the question. “Well,” he answers after a moment, “I believe it strengthened my faith. Yes.” I want very much to believe him.
Tom left Catholic Charities, and the priesthood, not long after he conducted the last of his burials for the homeless. A decade later he joined Moveable Feast and embraced its mission to provide sustenance for people in need, people like those to whom he once ministered.
Tom’s fellow staff members know little about his life a generation ago. Most of them aren’t aware of the aching memories beneath the calm surface of their sensitive and capable boss. They may not fully understand why Tom leaves the office once a month to distribute food personally to homebound clients.
But they will tell you that when Tom Bonderenko returns from those deliveries, he always has tears in his eyes.
We mark life’s milestones with festive food and rituals. And culinary traditions can play an important role for mourners, too. Here are 7 ideas for meaningful ways to incorporate food and drink into a memorial.
Bespoke Libations
Personalized, or ‘signature’ custom cocktails (or non-alcoholic mocktails) and craft beers celebrating the unique personalities are increasingly popular at weddings. And they make sense for funerals, too. A special drink, named after and inspired by a loved one, could be served during a toast or at a time when friends and family are invited to share a memory of the deceased. Later, the recipe can be given out to guests. That custom cocktail can be prepared on the deceased birthday or their “deathiversary” — or anytime, really.
Ice Cream Truck
There are numerous cultures around the world that incorporate a special sweet dish or candy into their funeral rituals or feasts to remind mourners that, even amid grief, life is sweet. An envelope with candy may be passed around at Chinese funerals, for example. A great twist on this important sentiment — and I wouldn’t mind incorporating into my own funeral — is the well-timed appearance of an ice cream truck, leaving my loved ones with their last memory of me being one that’s sweet.
Rosemary Bread
On particularly difficult days — like Mother’s Day and Father’s Day — one way I honor my grief (and the memory of those I’ve lost) is by making rosemary tea bread. Rosemary is an herb of remembrance. The Romans used it in burial rites. Shakespeare references it in “Hamlet”: “Ophelia in her madness names plants that were known for their capacity to ease pain, particularly inwardly felt pain” — “There’s rosemary, that’s for remembrance; pray, love, remember.” Here’s a recipe.
Funeral Biscuits
Funeral biscuits were paper-wrapped cookies handed out to mourners at funerals or taken door-to-door as an invitation to a funeral. The biscuits first made their appearance in 1600s Europe and were commonplace in America through the early 1900s. The wrappers were custom printed with a poem or prayer and the name of the deceased. Although edible, the biscuits were often kept as keepsakes. A modern version can easily be adapted and created with the help of children, who are so often left out of these important rituals and are seeking a way to express their own grief. Children can decorate the wrapper, and even help with the baking. Here’s a recipe.
Custom Cookbooks
Danielle Oteri, the mastermind behind the foodie website Feast On History, creates custom family cookbooks. Here’s how it works: Oteri’s company, according to its website, will “look at census records and immigration documents. We’ll conduct interviews with you and/or your family members and record the memories and meals that were shared. Next, we’ll research those recipes and delve deep to find out exactly where your relatives came from and what influenced their cooking. Finally, we thoroughly test the recipes and record them so that these wonderful traditions will never again be lost.” Amazing, right?
Vegetable Wreaths
Funeral florist extraordinaire Cassandra Thompson ofStems UK created a stunning memorial wreath made with vegetables. It’s a meaningful tribute for a loved one who enjoyed gardening. You could even use vegetables from their own garden. Another idea for those mourning the loss of a beloved gardener — seeds or plantings could be harvested from their garden to be distributed and replanted .
Funeral Books
If you’ve been to a wedding in the past few years, chances are you’ve been handed a wedding program, featuring photographs of the happy couple, factoids about how they met, details about their families or the story of their first date. Little booklets like these can frequently be found in Thailand as well, but at funerals — not weddings. In Thailand, these memorial books, called nang sue ngam sop, are typically written by the family of the deceased, and contain photographs from graduations, weddings or personal stories and anecdotes. A hallmark of these books are favorite recipes of dishes they were known for cooking (or for enjoying). In fact, recipes from Thai funeral books were the main inspiration for Chef David Thompson’s Nham restaurant, which earned a coveted Michelin Star – the first for Thai cuisine.
