November-December 2020 | Health

‘A sense of peace’

Before the pandemic, hospice volunteers could hold patients’ hands and talk with them face-to-face. They’re still finding ways to keep patients comfortable—and that connection helps the volunteers, too.

Musician Nina Falk from the nonprofit A Musical Heart performs outside Casey House in Rockville. Photo by Lisa Helfert

In February 2016, Tom Hall turned to his wife, Lisa, after dinner in Dupont Circle and told her he couldn’t figure out the 20% tip. They both knew
right away that something was terribly wrong. Tom, a high-ranking CIA executive, was “brilliant—a Ph.D.-level mathematician,” Lisa says.

After months of doctor visits, blood work, CAT scans and MRIs, and a three-day trip across the country for more tests by specialists at the University of California, San Francisco, Tom was diagnosed with Creutzfeldt-Jakob disease, a rare and aggressive degenerative brain disorder with no cure. The Potomac couple was told that Tom, 65, had only months to live. Lisa, an occupational health nurse with the federal government, wanted to care for her husband at home until he died. She took a leave of absence from her job and became his full-time caregiver. Tom’s condition deteriorated rapidly, though, and by August Lisa began exploring hospice.

She didn’t have any friends or family who’d used hospice, so she researched online—six hospices serve Montgomery County—and ultimately chose to work with Rockville-based Montgomery Hospice. Its list of complimentary services included bedside musical performances, aromatherapy, pet therapy, massage, and Reiki—a healing technique based on touch. “I wasn’t sure what Tom would ultimately want, but I liked that there were so many choices,” Lisa says. She contacted the hospice, which sent a team—a nurse, social worker and chaplain—to her home to discuss what they could do to help make Tom’s final months easier for both of them. “They took out this pamphlet and told me, ‘We can do all of these for you, or some of these, or none—whatever you want.’ ”

A classical music aficionado, Tom agreed to let the hospice send a music therapist certified by the American Music Therapy Association to help ease his angst and stress. The woman came with “a miniature harp and an iPod with a library of music,” Lisa says, and during the sessions Lisa could see Tom relax and his breathing improve. The hospice also helped Lisa set up a master bedroom in the family room of the couple’s two-story colonial, bringing in a hospital bed and supplies so Tom wouldn’t have to navigate the stairs.

Lisa and Tom Hall traveled to San Francisco three times so that Tom could assist doctors researching his rare disease. Courtesy photo

Though Tom’s health was declining, he and Lisa took two more trips to San Francisco to assist doctors with their research. “Tom was a man of science,” his wife says. “He really wanted to help the scientific community, even as he was dying.” Montgomery Hospice supplied the wheelchairs, walkers and other supplies Tom needed for his flights, and the hospice doctor worked with Tom’s California-based medical team to coordinate his care.

Montgomery Hospice also encouraged Lisa to take some time for herself. “They sent us this great volunteer named John so I could run errands or go shopping or even nap or read a book,” she says. “John was an attorney who had traveled extensively and was a great storyteller. …Tom and I would sit with him and just be enthralled hearing about his adventures.” Thinking back, Lisa says what was most valuable to her during these difficult months was knowing that anything she needed was a phone call away. “Sometimes I just had a quick dosing question,” she says.

During the final stages of Tom’s disease, the hospice staff suggested—and delivered—a Hoyer lift to help get him to his wheelchair so he wasn’t confined to his bed all day. “I had assumed going in that the nurse, the social worker, the volunteer—everyone—would work independently,” Lisa says. “But actually, everyone…worked as a consolidated team.” After five months of hospice care, Tom died at his home on Christmas Eve. His favorite classical music was playing in the background, and Lisa and the couple’s two grown sons were by his side.

Tom listening to music in the couple’s backyard in Potomac. Courtesy photo

Nearly four years after Tom’s death, Lisa, now 65, is a hospice volunteer herself, donating her time to families who are going through the same things she did. “My first assignment was a lovely older woman who lived alone and really just wanted company,” she says. “We would sit and talk about fashion, shopping, old Washington—we both were native Washingtonians.” For other families, Lisa has run errands, provided respite care and even given lavender hand massages. “Every family wants something a little different,” she says. “The relationship builds over time, and as families begin to trust me, they can vocalize what would be most helpful for them. I just go with it.” Since COVID-19 put a temporary halt on in-person volunteering, she’s had to stop sitting with patients and has instead been making masks for hospice nurses. “It took a few years, but I would say I am very happy with my life,” she says. “And I’m happy to be giving back.”

While hospices are still sending nurses on rounds in full personal protective equipment, most are conducting social worker and chaplain visits by phone or video and have found ways to keep their volunteer services going. “We had a hospice patient who really wanted to hear piano music, so we found a pianist to play the piano over Zoom for him,” says Nancy Cook, vice president of marketing, communications and public relations for Capital Caring Health, which opened an office in Bethesda in January. Since the start of the pandemic, local hospices say they have seen a spike in patients with COVID—some who contracted the virus at the facilities where they live, others who got it elsewhere. “Recently, we [enrolled] a 100-year-old woman who had contracted COVID at her nursing home,” Cook says. The patient is still under hospice care, but she’s no longer COVID-positive.

The American Cancer Society defines hospice as “compassionate care for people in the last phases of incurable disease so that they may live as fully and comfortably as possible.” Though hospices don’t provide full-time care for patients, hospice care often involves a team of professionals focused on the physical, psychosocial and spiritual needs of both the dying person and their loved ones. Hospice services can be provided at a patient’s residence or in a hospital, assisted living center, nursing home or inpatient acute care center.

“I hate it when doctors say to patients at the end of life, ‘There’s nothing else we can do,’ ” says Joy Sexton, director of Jewish Social Service Agency (JSSA) Hospice in Rockville. “That dismisses a whole end of our health spectrum.”

CaringMatters volunteer Elizabeth Tinling (right) dropped off food for Helda Sheldon at the Hebrew Home of Greater Washington in Rockville, and visited with her through the window. Photo by Lisa Helfert

To receive hospice services, patients must agree in writing to forgo most curative treatments and instead focus on palliative care: treatments designed to provide comfort and pain relief, but not aggressive medical intervention. A hospice physician and another physician also have to certify that they believe the patient has six months or less to live, based on the typical progression of their illness. Bill Gammie, executive director of Seasons Hospice & Palliative Care of Maryland, which serves Montgomery County from its regional office in Columbia, says hospices assess patients every two weeks to ensure that they meet the six-month criteria. However, he says, “If, after weeks and months of reassessments, doctors still think a patient has six months or less to live, they will still qualify for hospice because the six-month threshold is always resetting.”

While hospice staff and volunteers have had to make adjustments during the pandemic, they can still play an important role in keeping patients comfortable and increasing their quality of life. Allison Stearns, CEO of CaringMatters in Gaithersburg, says her hospice volunteers have been calling and FaceTiming patients regularly, running errands for them and their families, and dropping off meals to patients and their caregivers. CaringMatters doesn’t have medical providers on staff, but offers volunteer services similar to other hospices. “With all the social isolation going on, it’s more important than ever for us to support our families,” Stearns says. One service that can’t be performed at a distance is respite care. In normal times, she says, “our volunteers would stay with patients for hours so caregivers could get a break. We can’t do that now, and that’s hard for everyone involved.”

CaringMatters volunteer Hazel Strahorn (right) visited with caregiver Shahida Ahmed, whose husband is in hospice care. Photo by Lisa Helfert

Jennifer Gold, who volunteers with both CaringMatters and Montgomery Hospice, is eager to get back to in-person visits. In the summer of 2019, Gold met with a hospice patient who was quiet and detached at first, but the woman recognized every verse of the church hymn Gold was singing. “We usually plan on just doing the first verse or two, but this woman started singing along and knew every word, so we kept going through all six verses,” says Gold, part of an organization called Threshold Choir that sends groups of three or four singers to perform at the bedside of hospice patients. In her four years with the choir, Gold has performed for many people who are uncommunicative when the singers arrive but become invigorated when the music starts. “Sometimes the music brings back memories that make them cry,” says Gold, who lives in Bethesda. “But the music never fails to make them present, which is always wonderful to see.”

Church hymns are most popular, but requests for Frank Sinatra are on the rise, Gold says. Since the pandemic, Threshold Choir singers have been limited primarily to Zoom rehearsals, but Gold and her fellow choir members used to make several visits a week to nursing homes, assisted-care facilities and private homes. For now, hospices are arranging for solo performances with musicians that can be shown live to patients via a phone or laptop. “It’s not the same as being in-person,” says Sharon Cline, director of clinical access services for Montgomery Hospice, “but we’re doing what we can with what we have.” Threshold Choir is affiliated with Montgomery Hospice. Other musicians, like those affiliated with the nonprofit A Musical Heart in Takoma Park, perform for patients from all local hospices.

JSSA Hospice volunteer John Ward, who lives in Kensington, shares a communion service with Phyllis Gibbs Fauntleroy on the patio at Sunrise of Chevy Chase. Photo by Lisa Helfert

Phyllis Gibbs Fauntleroy, 98, is descended from a formidable African American family that has sent six generations of women to college, beginning before the Civil War. Fauntleroy has a master’s degree in English from Columbia University. She still reads the newspaper every day, usually while sitting in a recliner in her cozy living room, where her walls are covered with photos and canvases she’s painted over the decades.
Fauntleroy enrolled in hospice with JSSA in April 2019, shortly after she was diagnosed with congestive heart failure. Her two daughters (Fauntleroy also has two sons) credit their hospice nurse, Jaka, with saving their mother’s life in June 2019, when Jaka detected a wheezing during Fauntleroy’s weekly checkup and immediately ordered an oxygen tank. It proved indispensable a week later when Fauntleroy became dangerously short of breath. The daughters say Jaka also helped coordinate a schedule for Fauntleroy that allows her more daytime hours in her living room and less time in bed.

Since the pandemic’s arrival, several staff members and residents at Sunrise of Chevy Chase, the assisted-care center where Fauntleroy has lived for five years, have tested positive for COVID, but Fauntleroy remains safe and well. While friends and family have been prohibited from visiting Fauntleroy in her apartment, Jaka still comes most weeks to check on her. This summer, Sunrise began opening its patio for in-person visits, by reservation only, but friends and relatives still aren’t allowed inside.

“Jaka calls me before she’s going to visit our mother to ask what we want her to check on, and then she calls me afterwards to give me a report,” says Fauntleroy’s daughter Phylicia Fauntleroy Bowman. “It means so much to us that we still have Jaka, who my mother knows and trusts.”
Before the pandemic, Fauntleroy’s visitors also included John Ward, 54, a JSSA volunteer whom Fauntleroy and her daughters consider part of the family. For Ward, his 2½ years volunteering with hospice patients have been transformative. “I come in and meet people just where they are,” he says. “For their loved ones, there’s so much history attached. But just sitting with them and holding their hands, or smiling at them when they open their eyes, is a gift to them and to me.”

Photo by Lisa Helfert

Ward was paired with Fauntleroy because of their shared love of art: He has a background in fine arts and teaches after-school art classes. The two bonded, though, over their shared Episcopalian upbringings. Soon after they met, Ward began conducting personalized 20-minute services for her that included scripture readings, psalms and her favorite hymns. Early this year, Ward, a lay Eucharistic minister, got permission from his church to bring communion to her. “We had such a strong spiritual bond,” Ward says. “When I started bringing her communion, that made our bond even stronger.”

These days, phone calls have replaced Ward’s weekly visits, and he’s conducting most of his communion services via FaceTime. A local church and civic association now provide and deliver a sealed sleeve of wafers and travel-size communion cups prefilled with grape juice. “She’s able to hold the cup and take the little wafer,” Ward says of Fauntleroy. “But I think the isolation has been hard on her—she’s not as talkative as she was before.” Still, Fauntleroy is always happy to hear from him. “Mrs. Fauntleroy answers the phone and immediately says, ‘Hello, John,’ before I even have a chance to say anything—someone must have programmed her phone so my name comes up,” Ward says. “I know hearing from me gives her a sense of peace.”

Dr. Jonathan Musher, a gerontologist in Chevy Chase for nearly 40 years, explains to patients that they can go on and off of hospice care if they have a change of heart, or if newer curative treatments become available. “No one wants to feel like you are closing the door on them,” he says. In recent years, Musher says he’s seen more patients enrolling in hospice at an earlier stage in their illness. “Twenty or 30 years ago, people only thought about the negatives with hospice,” he says. “Today, more people understand that it’s a good benefit to have if they sign on early enough.”
In 2018, more than half of all deaths in Montgomery County were patients on hospice at the time, according to the Maryland Health Care Commission. JSSA’s Sexton says that’s double what it was 20 years ago. “We’re now doing a much better job translating hospice’s benefits to the community,” she says.

If patients wait until the very end of their lives to enroll, hospices aren’t able to get beyond stabilizing their medications, Cline explains, a situation she calls “crisis-management mode.” When that happens, she says, patients don’t get to experience all that hospice can offer. Cline recalls a patient she saw years ago who lived in an active senior community. He had been a late referral and died a day after starting hospice. A few weeks later, Cline received another referral from the same place. That man turned out to be the deceased patient’s neighbor. “The first thing this gentleman said to me was, ‘I’m not sure I want to use you people. My neighbor used you and he died the next day,’ ” she says. The man enrolled anyway, lived several months on hospice care, and had time to work with the hospice chaplain and reconnect with his church before he died.

“Picture going in for dental work without having Novocain,” says Montgomery Hospice president and CEO Ann Mitchell. “You’d just clench up and be miserable. But once you have Novocain and get the pain under control, you can relax. In hospice, once we can get patients’ pain under control, they can focus on their faith, their family, whatever is most important to them.”

Hospice is a benefit covered by Medicare, Medicaid and most health insurance policies. Many local hospices also set aside funds to cover those who don’t have insurance. But Medicare requires hospices to discharge patients whose medical conditions stabilize and who no longer meet the six-months-to-live criteria. “We are expected to be good stewards of federal dollars,” Sexton explains.

Local hospices say they “live discharge” 5% to 10% of their patients each month. Monica Escalante, Montgomery Hospice’s chief financial officer and chief communications officer, recalls the time they had to discharge a 100-year-old patient: “She started doing really well, and we couldn’t prove to Medicare that hospice was needed anymore.”

For patients who continue to qualify, hospices will sometimes cover the cost of limited-time medical treatments, such as radiation or dialysis, if the goal is to live long enough for, say, a grandchild’s wedding or other important event. “We had a gentleman once who had been a Korean War vet, and he was getting an award for his service,” Cline says. The hospice approved a blood transfusion for the man, hoping it would enable him to live long enough to accept the award in person. The transfusion worked, and the vet received his award shortly before he died.

On a windy morning in April 2019, Michael Eidsness drove his wife of 44 years, Kathy, from their College Park home to Kaiser Permanente’s Gaithersburg urgent care. She’d been diagnosed several months earlier with late-stage esophageal cancer; that morning she was struggling to swallow. While at the urgent care center, Kathy fell into a coma. She was transferred to Adventist HealthCare Shady Grove Medical Center in Rockville, where she remained for nearly a week. The doctors recommended discharging Kathy to an inpatient facility and arranged for a representative from Casey House, the county’s only inpatient acute-care hospice center, to meet with Eidsness at the hospital. “I’d never heard of Casey House before that,” Eidsness says. With 14 beds, Casey House is limited mostly to patients at the very end of life whose symptoms cannot be managed at home. Most, like Kathy, are referred by local hospitals; some are brought directly from home for short-term medical intervention.

Kathy spent 15 days at Casey House—and never came out of her coma—before she died on May 5, 2019, at the age of 75. The couple didn’t have children of their own, but “Kathy had been the aunt who never missed a lacrosse game, never missed a graduation—by far everyone’s favorite aunt,” says her sister, Patty Vorel. All of Kathy’s nieces, nephews and grandnephews “wanted to come and say their goodbyes to Aunt Kathy,” Vorel says. “Casey House let all of us come and made us all feel welcome.” Eidsness says the staff put out fresh-baked cookies and offered them gentle-touch massages like the ones performed on patients. For Kathy, Eidsness says, the nurses at Casey House “gave her medication, and I could see that it helped her stop struggling—she looked like she was sleeping peacefully.”

Families say Casey House, which is operated by Montgomery Hospice, feels like a relative’s home, a cozy yellow rambler on a leafy street in Rockville, with a garden courtyard and a koi pond filled with fish. Once or twice a week, in normal times, volunteers sit around a tablecloth-covered dining room set offering visitors cookies, snacks and tea served in china cups. Vorel remembers fondly the hours the family would gather in the living room at Casey House. “What a difference it makes,” she says, “to be served tea and food brought in with love.”

For Lisa Hall, hospice’s most profound benefit came a few months after her husband Tom’s death, when Montgomery Hospice encouraged her to enroll in one of its six-week bereavement support groups. At first, she resisted. “I started my mourning period when Tom was diagnosed, so I felt like I had time to prepare,” she says. “Looking back, I can see I was completely in a fog, but at the time I thought I was doing all right.”
The day of the first session, Lisa pulled into the parking lot of the Bethesda church where the bereavement group was meeting and saw its leaders out front, greeting the participants. “It was as if they were saying, ‘You are one of us—let’s go in together,’ ” she says.

Each bereavement session was a “two-hour guided trip,” Lisa says, where every meeting built on work from the one before it. (Hospice bereavement groups now meet virtually because of the pandemic.) During one exercise, participants were asked to verbally draw a picture of how they felt about their loss. “Before Tom became ill, I saw the two of us sitting in a little boat together heading off into the horizon,” she says. “After he died, it was as if someone pulled the rudder out of the boat and I was just spinning around in circles.”

Slowly, members of the group learned to trust and support each other as they grieved. “Some of us were more emotive than others, but in the group you could scream or cry, and everyone would give you a hug if that was what you wanted,” Lisa recalls. She says the support group and its leaders were instrumental in helping her chart a new course. “It gave me the strength to know my life would go on, and even though it wouldn’t be with Tom, it would still be a great life.”

Amy Halpern is a journalist who has worked in print and television news, and as the associate producer of an Emmy award-winning documentary. She lives in Potomac.