Comfort and Care
By Michele Graham
Photography by ChiChi Ubiña
“We speak openly about what each patient wants and then honor his or her unique end of life journey,” says Cynthia Emiry Roy, MS, LCSW, CHA. Honesty, peace, compassion, dignity are more than words to Cynthia—they are the hallmarks of Regional Hospice, the first and largest nonprofit hospice in Western Connecticut. Whether taking care of patients in their own home or in the 36,000 square foot Center for Comfort Care and Healing, Cynthia and her staff push to make sure each patient’s last days are filled with grace and warmth.
“The heart and soul of what we do is support and empower patients to live fully until they die,” says Cynthia. “We look at death as a natural process, and approach it honestly by creating strong human connection between staff and volunteers and our patients and their families. Once a patient dies, connection with family and loved ones continues with grief support that can last up to 12 months. The entire process is about nurturing connection as people experience loss and face closure at the end of life.”
A groundbreaking expansion
Regional Hospice has been providing end-of-life services since 1983. But in 2007 the view expanded when Cynthia was named president and CEO. Up until this point, the nonprofit’s hospice services were only done in-home. When being at home wasn’t a viable option, patients were left to choose between dying in a hospital bed or in a nursing home. After a life-altering experience with a terminally ill patient – a 42-year old recently widowed mother–Cynthia knew that things could be done differently. In 2010, she helped to re-invent the state’s regulation surrounding inpatient hospice and led Regional Hospice in building the Center for Comfort Care and Healing.
“We always encourage people to visit us and tour the Center because it’s something that you have to experience in order to truly understand how special and unique it is,” notes Cynthia. Along with each patient having their own suite and round the clock care, there are family and living rooms, a large kitchen, library, chapel and spa. And because ‘hospital food’ is far from anyone’s vision of comforting or joy-inducing, the Center also has its own in-house kitchen with an executive chef who prepares made-from-scratch meals—from favorite pasta dishes to lobster rolls.
Outside there is 4,000-square-foot Memorial Garden, which includes perennial beds and borders, a kitchen garden, a children’s playground and dedicated pavers and teak benches that honor former patients, friends and donors. The vibe inside and out is positive, bright and vital.
The most difficult decision made easier
It’s hard enough to reconcile the imminent passing of a loved one. It’s just as hard to decide where their final days should be spent. Cynthia who holds a Masters of Science, is a licensed clinical social worker, and is a Certified Hospice Administrator advises, “A lot of people, if they can, choose to die at home. But that’s not always the best option for everyone. If symptoms are such that they can’t be managed at home, patients can choose to stay in our Center for Comfort Care and Healing. This can also be incredibly beneficial to the family by providing much-needed respite.”
Tending to the youngest patients
If a playground sounds out of place for a hospice, it’s because the center doesn’t just cater to adult patients. It also serves their families and reflects the wide span of ages at the center. Cynthia notes, “Unfortunately, terminal illness affects people of all ages—from newborns to centenarians. We have and have had a lot of children and teens on our service.”
To that end, Regional Hospice is launching the North Star pavilion expansion in 2020, which will make Regional Hospice the only purpose-built, in-patient children’s hospice in the Northeast and one of only five in the nation.
“The needs of dying children and their families are complex,” says Cynthia. In high school, Cynthia helped care for her best friend, who was dying of leukemia. “From that experience many years ago, and through the ten years we’ve been running our pediatric hospice program, I know the wide spectrum of support that children require.” But North Star will also fulfill a critical need that goes beyond the child. “Parents must know that they can leave their child in capable and loving hands so they can take a break—whether it’s caring for other children they may have or providing self-care to restore their energy and well-being.”
And instead of spending their end of life in intensive-care units with beeping machines and the harsh glow of fluorescent lights, young ones will fall asleep under twinkling, starry sky ceilings in one of four private suites that accommodate family and pets.
The North Star pavilion experience also includes Emily’s Last Wish, an animation and picture book that describes the hospice journey through the eyes of a child. “It serves as a doorway to understanding what children and their families need and deserve at end of life,” says Cynthia.
‘Last Wish Books’ are one of the more unique and unexpected aspects of the Regional Hospice’s approach to end of life. “Our Wish Books are compilations of stories about our patients’ wishes that have been granted. For example, a few years ago, Chelsea, a fourteen-year-old patient told us her bucket-list wish to be a glamourous runway star. With the help of many local businesses, Chelsea strutted down the custom-made illuminated runway in a private hotel suite following a hair, makeup and fashion session. A professional photographer captured her time in the spotlight followed by a family photo shoot with Chelsea, her parents, two brothers and two sisters. It was an unforgettable experience for everyone,” recalls Cynthia.
Artist and illustrator Nancy Stevenson’s last wish was to experience the first-ever robotic tour of the Whitney Museum of American Art in New York City–from the comfort of her hospice bed. Using a telepresence robot connected to software on Nancy’s laptop, Nancy virtually explored the Whitney while a museum docent was on hand for questions, allowing Nancy to be fully immersed in the art.
From Danbury to Greenwich’s borders, from 8 to 80 years
Though many in lower Fairfield County have benefited from Regional Hospice’s in-home care, the organization is actively looking for a location on the border of Greenwich and Stamford in which to build another Center for Comfort Care and Healing. As a nonprofit, the Regional Hospice depends on donations to bring its services to those who need it where they need it.
Which is why Regional Hospice just launched its capital campaign—to continue to fulfill Emily’s Last Wish and create the North Star expansion. More information about Regional Hospice can be found at RegionalHospiceCT.org; direct donations to the North Star pavilion can be made at EmilysLastWish.org.
“Serving people who are dying isn’t for everyone. People are drawn to this work from something deep inside,” says Cynthia. “When a patient is in our Center, family and loved ones can step out of the primary role as caregiver. They can just be with the patient, sharing precious time, while staff and volunteers meet the patient’s needs.”