Author: Carol Diggs

It’s a conversation starter you might throw out with a group of friends hanging out at a winery, or after a large informal family supper: “What would you like to do before you die?” The answers are probably interesting, intriguing, even surprising. The discussion could inspire someone in the group to make those dreams happen.

But for Beth Eck, director of end-of-life doula services for Hospice of the Piedmont, the real question is: “Have you said what needs to be said?”

The term birth doula (a person trained to provide non-medical services, support, and advocacy for women through pregnancy and birth) is pretty well known, and their services are increasingly popular. But fewer people have heard of death (or end-of-life) doulas—those who are trained and prepared to provide non-medical services, support, and comfort through life’s last and most mysterious transition.

Eck became interested in questions of death and dying during a 25-year career as a sociology professor at James Madison University. Reading Atul Gawande’s Being Mortal: Medicine and What Matters in the End “changed my life,” she says. “I thought, ‘I need to be doing something [in this field].’” Having experienced the deaths of friends, she saw how modern medical care has become focused on beating death, what she calls “a cure model rather than a care model. We’ve taken life events and made them medical—but people still want their autonomy, their dignity.” 

Eck began volunteering for Hospice of the Piedmont, where colleagues asked if she had considered becoming a death doula. She went through training programs offered by the International End of Life Doula Association and by an organization called Going With Grace, and keeps up with the field through continuing education geared toward end-of-life care in a hospice/palliative care setting. 

In 2021, Hospice of the Piedmont hired Eck to launch its end-of-life doula program, which now has two dozen volunteers. Those who want to take on the role have to complete the 16 hours of HOP’s regular hospice volunteer training, and additional doula preparation designed by Eck. Over the training period, she develops a sense of the assets and style of each volunteer, pairs them with the right patients, and mentors their work.

I had the opportunity to sit down with four members of Eck’s team, and found that while all of them have worked as hospice volunteers, they each came to be doulas for their own unique reasons.

Aurora DeMarco, 60, a massage therapist, worked as a bereavement counselor. “I had lost my mother and several friends,” she recalls, “and I felt called to do this work. Grieving is a time when people want to talk, to have real conversations.”

Laura DeVault, 67, had been a pediatric nurse, then a stay-at-home mother, then a bookstore owner. (“I’ve spent my whole life preparing myself for my next stage,” she says.)  Having gone through the passing of parents and close friends, “I’m comfortable with those conversations. This work feels important … profound … intimate.” (She is also INELDA trained, and, in addition to volunteering with HOP, she supports individual clients for a fee.) 

Kate Adamson, 44, works as an on-call hospital chaplain. In that position, she says, “I’m called in for acute help;  I’m unlikely to see the patient again. I came to volunteer at hospice because I wanted a more ongoing relationship with the people I was serving.”

Jennifer McLaughlin, 40, a nursing assistant for more than 20 years, works mostly with geriatric patients, and is often present with patients as they die. “I wanted to get more training on how to help them with that transition,” she says. “Sometimes they need the extra comfort, supporting them, listening to them, not trying to give them answers. As a caregiver, you have to let go the desire to fix things.”

The other three nod in agreement. It’s a central tenet of their end-of-life training—to be, in DeMarco’s words, “someone with no agenda. That way, we can be with the patient in a way that’s not stressful for them.” DeVault says with emphasis, “It’s not my job to get the patient to accept their diagnosis. My role is to be with the client, as they are, in their process.”

McLaughlin agrees: “If they don’t accept that they are dying, you just help them get to a place of peace for them. I know when I see peace, when they have a strength that they didn’t have when I walked in.” 

One of her patients, DeMarco recalls, “kept thinking there was something she could do. She kept talking about her frustration [that she was dying].” As a death doula, DeMarco saw her role as sitting with the patient in that emotion, being someone, perhaps the only one, to whom the dying woman felt safe expressing those feelings.

“This is highly intuitive work,” says Eck when explaining the role of doula. “We are here to listen, to be present, to be still—witnessing, not giving advice. We’re saying [without words], ‘You don’t have to perform for me. I am here for who you are today.’” Often, she says, “we’re the only ones around them who are not afraid.”

She describes this attitude as “a constant practice,” and the volunteers agree. “I can’t do this work for more than an hour at a time,” says DeMarco. “You’re really zeroing in, and it’s hard not to talk about yourself!” The others laugh knowingly.

Each end-of-life doula is assigned one or two patients at a time, and will work with those individuals through their passing, whether that comes in weeks or months. Not all hospice patients have or ask for doulas. Sometimes, the hospice team (which includes a doctor, a nurse, a care assistant, a social worker, and occasionally a chaplain) will recommend a doula for added support for the patient, or for the family as well. Because the role isn’t subject to regulatory constraints, doulas have a greater degree of flexibility in deciding how long their sessions are or how often they meet with a patient or family.

A death doula will also provide respite care, a chance for a family member to take a break without leaving their loved one alone. Sometimes the patient has dementia or is unaware of their surroundings. “It’s harder with Alzheimer’s patients, who may have no idea I’m there, but whether they can feel my presence [or not], it’s more about the intention, that I’m there for them,” Adamson says. In these situations, “just being present is a baseline nourishing.”

Death doulas also see advocacy as part of their role. They will alert the hospice care team if they see the family needs help with end-of-life planning, financial issues, or grief counseling. “Sometimes I am advocating for the patient to herself,” Adamson says. “That’s one way the doulas can serve—[helping the patient] consider their legacy, how they want to say goodbye.” 

DeMarco, who has volunteered in hospice settings for more than a decade, says, “Even the patients have their hesitations. They may still want curative care. Or they may feel like people around them are thinking, ‘Hurry up and die already.’” 

These volunteers describe their work as important and fulfilling, but all agree it can be intense and draining. Self-care is critical. “When I’m off the clock, then I’m off the clock,” says McLaughlin. “I turn my phone off, and put myself in a place of peace.” 

“I just started taking Mondays off and setting some limits,” Adamson says. “I tell people I’ll answer emails Tuesdays and Thursdays. You really have to be intentional about taking care of yourself.” She recharges by going paddle boarding (out of reach of email or cell phone). DeVault goes for long walks in the woods, and says meditation—and humor—helps.

But the best self-care is understanding the death doula’s role: to support the individual’s own choices about how they want to navigate the end of their life. “It’s the patient’s work to do, it’s their death,” says Eck. Adamson describes this as “being connected without being attached. I’m completely there with them when I’m with them, but when I leave, I am not attached.”

As a self-described “introvert who hates small talk,” DeMarco says that being a doula is for her a way to be with people and have conversations that really matter—to them, and to her. She has a client whom she’s been serving for over a year, “and it’s going to be hard when she dies. But I think, ‘Aren’t I lucky, to have had this connection?’”

“It’s given me a perspective on what’s important,” says Adamson. “I have a curiosity [about the end-of-life transition], rather than being fearful.” For DeVault, being a witness to the process of dying “has made me want to have more important conversations. These are the big questions, the big mysteries.”  For DeMarco, it’s about “the missing of all these people whose lives and deaths I’ve been part of.”

Their teacher and mentor, Beth Eck, says that for her, being a death doula “is such a privilege, to be asked into their lives at the end.”

The community of people who have served in our country’s military is a tight fellowship. So when University of Virginia grads Jim and Gina Mallon (Jim was in the Marines, Gina in the Air Force) got the call for a program called We Honor Veterans, they stepped up.

The call came from Robert Dewberry, whom Gina met while volunteering at Monticello. Dewberry left Monticello to take a staff position as volunteer manager at Hospice of the Piedmont, and knowing both Gina and Jim had served, he thought the couple would be a great addition to the hospice’s efforts to recognize the service of their patients. The We Honor Veterans program is a collaboration between the National Hospice and Palliative Care Organization (of which Hospice of the Piedmont is a member) and the U.S. Department of Veterans Affairs, and is designed to help hospice volunteers support veterans and their caregivers. One aspect of the program is a pinning ceremony, during which the patient’s military service and contributions are reviewed and celebrated in an observance that includes their family and loved ones.

“Robert told me about the program and said, ‘We want you,’” recalls Gina, “and this sounded like a great way to give back.”

Jim had some experience with hospice—his sister passed away in hospice a few years ago, and her husband was a hospice volunteer. Both Gina and Jim went through the 16 hours of training for hospice volunteers, plus additional training with one of the current We Honor Veterans volunteers. And then, in true military style, Jim and Gina honed the process of organizing all the logistics needed to pull off the pinning ceremony seamlessly.

Dewberry puts the Mallons in touch with the patient’s hospice care team—the primary caregiver, the family, and their social worker—to determine if the patient is interested in We Honor Veterans. If they are, Jim (a history buff) will get more details about the individual’s service, research those assignments, and develop a presentation that covers the patient’s career and where it fits into our nation’s military history. “I want to flesh out what the family may know, and put the patient’s service into context,” he says. 

Sometimes only a few family members know much about the individual’s service—veterans are sometimes reluctant to talk about their experiences. And many of the veterans in hospice are from an era when they were drafted to serve, something their grandchildren may know nothing about in these days of the all-volunteer Army. With one patient, Jim’s research revealed the vet had been stationed in Germany the day the Berlin Wall went up; during the ceremony, one attendee—the vet’s granddaughter’s husband—realized he had been serving in Germany the day the wall came down.  

For the pinning ceremony, Gina handles the logistics and the presentation of the “packet.” Each veteran receives a framed certificate with the emblem of their branch of the service and an emblem of the We Honor Veterans program; a flag and a flag pin; a letter from Rep. Rob Bell, whose father served in the U.S. Navy; a coin representing their individual branch of service; and a card with their hospice care team’s names.

Gina and Jim see the pinning ceremony as a joyous time, a review of that individual’s life and contributions, an occasion their family can share. Gina explains, “This is a pat on the back, a ceremony they may not have gotten when they left the service.”

Hospice of the Piedmont has a total of 10 volunteers doing pinning ceremonies—Jim and Gina have conducted eight over the last 18 months. In some cases, the patients may be too sick to participate actively, but Jim remembers one Army veteran, a career Ranger, who didn’t seem lucid during the ceremony until Jim ended with a rousing “Hooah!” and the vet responded “Hooah!” right back. 

Many of the families make the pinning ceremony a positive event, Gina says, knowing it may be the last time they are all together. She recalls one family who took photos they had of their loved one’s service and posted them on a table surrounding a cake decorated like the American flag. At one ceremony, held at the patient’s home way out in the country, Gina says 30 cars were parked outside and a huge buffet was spread out for family and friends from Richmond, northern Virginia, and North Carolina.

“These ceremonies are celebratory, and cathartic, and a positive family gathering,” Jim says. “And the people attending all seem grateful, and humbled by their loved one’s service.”

Having served as a nurse in both military and civilian settings, Gina says, “I have great respect for hospice, [which] offer[s] people a way to die more comfortably, with dignity. It’s an honor to serve these people.”

A recent study by the Chesapeake Bay Program found that in the four years from 2013-14 to 2017-18, the bay’s watershed lost over 25,000 acres of tree canopy, while the amount of impervious surface (like buildings, roads, driveways, and parking lots) increased by over 50,000 acres. That’s disturbing news for folks living there—meaning us.

Charlottesville and its surrounding counties are part of the Chesapeake Bay’s vast watershed, and tree coverage plays a huge role in protecting our streams and rivers that feed into it. Trees absorb air pollution; they help control erosion and stormwater runoff, keeping silt and pollutants out of the streams; and they keep things cool and sequester carbon dioxide, thereby countering climate change. According to i-Tree, an online assessment tool, in 2018 Charlottesville’s trees provided $1.6 million in environmental benefits annually. For Albemarle County, that figure was over $76 million.

Our area is fortunate because we have great tree coverage to begin with: 42.5 percent of the city and almost 69 percent of the county, according to fact sheets developed from the CBP study. But we too are losing tree-canopy acreage—not a huge amount yet, but a heads up. “Even that single large tree makes a difference,” says Ann Jurczyk, chair of CBP’s Land Use and Conservation Subcommittee and Virginia director of outreach and advocacy for the Chesapeake Bay Foundation. “Fully mature trees—we just can’t replace them fast enough.”

In Charlottesville, Steve Gaines, urban forester with the Charlottesville Parks & Recreation Department, oversees trees on all city-owned property, including parks, schools, and rights of way—about 10 percent of the city. While the city has data on the percentage of tree coverage by neighborhood (thanks to a study commissioned by the Charlottesville Tree Commission, a City Council-appointed advisory body), having information on the quality of coverage is also crucial to guiding replanting and habitat restoration efforts (Gaines notes the city has applied for federal funding to do just that). 

This year, the city’s invasive control efforts have been focused on parks—Azalea, Forest Hills, Jordan, and Washington, site of the recently publicized “goat buffet.” (Fry’s Spring is also slated for the goat treatment.) In addition, the city spends $100,000 annually on tree planting, last year concentrating on school grounds. The key thing with replanting, Gaines says, is “getting the right trees on the right site.”

The Charlottesville Tree Commission reviews and makes recommendations on city projects and ordinances that affect tree coverage, says the commission’s Jeffery Aten, a local landscape architect. The commission is also part of a public-private effort called ReLeaf Cville that runs both educational and hands-on programs. With a $46,125 grant from the Virginia Department of Forestry, ReLeaf will plant 126 trees in the Rose Hill neighborhood this fall.

Albemarle County has to manage a wider range of land uses—a mix of urban/suburban landscape with more rural areas. “Maintaining tree canopy is a priority across several departments, including Community Development, Facilities & Environmental Services, and Parks & Recreation, focusing on landscape standards for development, partnerships for tree planting, and invasive species management on county land,” says Abbey Stumpf, the county’s manager of communications & public engagement. Current policies and possible new initiatives will be considered as part of the “AC44” Comprehensive Plan development process—residents can submit their comments on draft goals and objectives for environmental stewardship, parks and recreation, and historic, scenic, and cultural resources through the AC44 website.

In both the city and county, nonprofits like Blue Ridge PRISM, the Rivanna Master Naturalists, and the Charlottesville Area Tree Stewards work with government agencies and run their own programs on public education and habitat restoration. The Tree Stewards have planted trees at schools, parks (including Darden Towe, McIntire, Greenleaf, and Pen), and greenways, and its volunteers help care for the trees after planting, a key to long-term success. The Tree Stewards recently completed urban planting projects in the Belmont and 10th and Page neighborhoods. “We go to the places where they need trees,” says former forester and Tree Stewards member Barbara White. And, through the organization’s free classes, tree walks, and volunteer workdays, “we try to take care of the trees we do have.”

Of course, the elephant in this room is development, a pressing and contentious issue in both the city and county. In Charlottesville, where most of the canopy loss occurs on private land, “the only way we can influence this is through the ordinances and the code,” says Gaines. Public hearings are now underway for ordinance revisions that will help support forest preservation, including making the city’s Best Management Practices for Tree Preservation required. Albemarle County code has an “environmental standards bonus, which allows developers that maintain a larger percentage of wooded area a 5 or 10 percent increase in housing density. 

An encouraging new initiative, Resilient Together, is an 18-month collaborative planning process among Charlottesville, Albemarle County, and the University of Virginia (a significant landowner in both jurisdictions). The goal is to work together on climate resilience planning, which will include urban heat reduction, stormwater mitigation, and wildfire management—each benefiting from a healthy tree canopy. As it gears up, the Resilient Together initiative is actively encouraging public input and participation.

In the meantime, CBP will use data collected in 2022-23 to release an updated Chesapeake Bay watershed study next year.

The recent passing of James F. “Phil” Dulaney, the third generation of a family important in the Charlottesville area’s post-World War II growth, has spurred speculation about the future of several properties. Some of the family’s holdings, like the Charlottesville Oil site on Ivy Road and the derelict Afton Inn and Howard Johnson’s at Rockfish Gap, have been considered “blighted” for years. But one of the largest—the Swannanoa estate atop Afton Mountain—has always been a place of romance and fascination.

No one knows this better than Sandi Dulaney, Phil’s widow, who has been running Swannanoa since 2015. Dulaney, one of the few people who can say they have lived at Swannanoa, refers to the house as “she”—perhaps from the spirit of Sallie Dooley, for whom it was built, and whose portrait is featured in the 10-foot-tall stained glass Tiffany window that presides over the foyer’s grand staircase.

In 1912, Richmond businessman, millionaire, and philanthropist James H. Dooley built Swannanoa as a summer home for himself and his wife Sarah “Sallie” May. (He also had Maymont, their Richmond mansion which is now a museum and public park, built for her.) Their “summer retreat” is Italian Renaissance Revival in style, clad in marble from Georgia and lavishly decorated inside with Italian marble, ornate plasterwork, pastel frescoes, and inlaid wood. At about 23,000 square feet, the house is twice the size of Monticello. 

For its time, Swannanoa featured all the modern conveniences—indoor plumbing, central heating, electricity (supplied by its own power plant, since it was the first house in Nelson County to have electricity). With an elevator, a dumbwaiter, parquet floors, extensive gardens, two corner towers with spectacular views over both sides of the Blue Ridge, the mansion exemplifies a grander age, a time when (paraphrasing F. Scott Fitzgerald) the very rich were different from you and me.

After the Dooleys died in the 1920s, the house passed to his sisters. A Richmond real estate consortium’s attempt to develop the estate unfortunately coincided with the 1929 stock market crash. When development plans fell apart, the mansion sat empty for 12 years until Skyline Swannanoa, a group of investors led by A. T. Dulaney, bought it in 1944. (The U.S. Navy considered buying and renovating Swannanoa as a secret wartime interrogation center, but decided Congress would hesitate to purchase a marble mansion for that purpose.) In 1948, the property was leased for 50 years to artist and mystic Walter Russell, whose University of Science and Philosophy, constructed around his personal cosmology, was headquartered there until 1998. 

Time has taken its toll. The trees around Swannanoa have grown up, blocking much of the famed views. After the Russells’ lease expired, Phil Dulaney spent $3 million to replace the terracotta tile roof, clean and repoint significant areas of the marble façade, do extensive work on the interior, and replace the antiquated gutter system. But such a lavish house requires a lavish maintenance budget, and years of vandalism, curious intruders, and paranormal fans breaking in to search for “spirits” have done as much damage as time.

Dreams, however, die hard. Sandi Dulaney says her husband always wanted to open a bed-and-breakfast, but while the house’s lovely main floor is in decent shape, the upstairs rooms need extensive work. Seeking grant money or donating the property to a preservation organization, Dulaney says, would mean “losing control. The family wants to keep this place. I’m a steward here.” 

Her plans are to allow access to Swannanoa in ways that enable the public to enjoy its beauty while still protecting the property. Currently, public guided tours are offered the second Sunday and fourth Saturday of every month (reservations required). Private tours can also be arranged, and the site is popular for photo shoots and micro weddings.

The house and gardens can also be rented for private events. A recent fundraiser for the Shelter for Help in Emergency, sponsored by Autumn Trails Veterinary Center, recalled the house’s early days by having “The Howling ‘20s” as its theme; Dulaney’s toy poodle mix Lady Grace served as greeter. Dulaney and Adrianne Boyer, Swannanoa’s marketing and events director, have also developed a regular program of events, from Zen@Swannanoa Mindfulness Workshops to the Halloween Spooktacular, Christmas with Santa for children (and dogs), and an Easter Eggs-travaganza. “We’re trying to introduce this place to a new generation,” says Boyer.

Interest in Swannanoa has grown in the last few years as the house has become more accessible, Boyer says. “Our staff is growing, we have more volunteers helping out—it’s really a labor of love.” The current plan is to have tours and events generate income to cover maintenance, taxes, and salaries while possibilities for implementing the much-needed complete overhaul (several years and $50-60 million, according to Boyer) are considered.

“I tell people that she’s 111 years old, and isn’t going to get any younger,” says Boyer.