Nancy Peer knew it was time to get her son, Brian, out of the hospital. He was dying of testicular cancer, and there was nothing more doctors could do. But Peer, an associate professor in the master’s program for hospice and palliative care at Central Connecticut State University, knew there was still something she could do. She got him a bed at The Connecticut Hospice.
“When you think you don’t have choices, you still have choices,” says Barbara Pearce, interim CEO at The Connecticut Hospice, which was the first of its kind in the nation and remains a “well-known thought leader” in the field.
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Moving her son to CT Hospice, as the facility is also known, was the best choice Peer could have made, she says just two short months after Brian died at the age of 39, leaving behind his wife of one year as well as his parents and a younger brother. During the week he spent there, friends and extended family came to visit, and Peer and her daughter-in-law stayed with him. “Every nurse that came in was not only compassionate…, they would see how our son was doing and then they wanted to know how they could help us,” she says, calling the help her family received “priceless.”
Located on the Branford shoreline, where seagulls perch on slender pylons in the water and a gazebo faces Branford Harbor with a view of Indian Neck Point, CT Hospice’s setting might as well have been dreamed up by a landscape painter. A “double beach” emerges at low tide, when a short, broad sandbar connects a miniature island to the shore. Inside the glassy building, light is plentiful and the mood is calm. People incongruously use words like “happy” and “lucky” to describe their experiences there, even though most of Hospice’s patients have come to die.
CT Hospice was founded on a model begun in England by Dame Cicely Saunders, a World War II nurse and trained social worker who later became a doctor in order to open St. Christopher’s Hospice in London in 1967. When she later spoke at the Yale School of Medicine, Pearce says, she inspired Florence Wald, dean of the Yale School of Nursing, to take up the hospice movement in America. Wald traveled to Europe to study and returned to establish The Connecticut Hospice in 1974, first with home care, then inpatient care at a smaller location in Branford before the organization moved to its present site, the former corporate headquarters of Echlin, an automotive parts company. “She was, I think, sort of a force of nature,” Pearce says.
Today, CT Hospice houses 53 inpatient beds, many of them overlooking the water, as well as the offices of the home care operation. Of CT Hospice’s approximately 250 employees, 104 are nurses; two full-time doctors and two APRNs are also on staff. The institution recently weathered what Pearce calls a “very tumultuous” period that included vacancies in all five of its top positions and a crisis of financial mismanagement. A real estate mogul who also holds an MBA and a law degree from Harvard and has served on the boards of numerous local healthcare and other organizations, Pearce was brought in to right the ship. But even through the worst of times, she says, the quality of care never suffered, in great part due to the dedication of CT Hospice staff. “Everyone feels like this is a calling,” she says. “It’s not
That claim is borne out when Pearce boldly steps out in the hall and tells me to talk with whichever nurse has a free moment. That brings me to Rachel Green, who left her work as a post-op ortho/neuro surgical nurse to come to CT Hospice. Sure enough, unprompted, she describes her job as a “calling.” Here, she has more time to interact with patients than she did in the hospital. “I know the word ‘hospice’ is scary to people,” Green says, “but giving patients the quality of life that we can give and making people comfortable and managing those symptoms that they come to us for—it’s a rewarding experience.”
Karen Enders spent 15 years as a nurse at CT Hospice, left, then returned under the recent reorganization to become director of admissions. Despite all that experience, when her mother died at CT Hospice in October, she saw her work in a whole new light. “I never ever realized what a difference we really, really make,” she says. “It’s life-altering. It’s sacred.”
Not every patient qualifies for inpatient hospice care; they must have uncontrolled symptoms that can’t be safely managed in another setting, and they must be within six months of death, based on a “normal trajectory,” Pearce says. Even when they do qualify, Enders says it can be frustratingly difficult to get hospitals to discharge patients to hospice.
CT Hospice also serves around 150 patients with home healthcare at any given time, including “Stand by Me” palliative care for patients who may be continuing treatment and home hospice care for those seeking end-of-life comfort measures. As many as 15% of patients are actually discharged and sent home or to other facilities because their conditions stabilize or improve, Pearce says.
Beyond medical care, CT Hospice also offers art and music therapy, the support of social workers and religious leaders and 13 months of bereavement group meetings for family members after a patient has died. A band of 400 volunteers fills many needs: they drive visitors, staff the front desk, bring therapy pets, provide musical entertainment, teach chair yoga, simply sit with patients and listen. “If somebody wants something, we try to find a volunteer who can do it,” Pearce says. Through its JD Thompson Institute, CT Hospice is also accredited to teach continuing medical education to doctors, nurses and social workers. Hospice care is still underutilized, Pearce says, in part because “a lot of doctors weren’t trained to have end-of-life discussions and/or they don’t have time…”
The state has more than 40 hospice programs, though almost all of them offer only in-home care or comprise a few dedicated beds in a hospital. The only other inpatient facility is located in Danbury. While many of the nation’s hospice facilities are for-profit businesses, CT Hospice remains a nonprofit. Philanthropy bridges the gap between what Medicare will cover and the actual cost of care; there is no cost to patients for their stay. But Pearce worries about the long term—how much Medicare will continue to cover and how to sustain the level of care people have come to expect. “People here die comfortably,” she says. “They don’t die in pain, and they don’t die afraid. And they—unless they want to—usually don’t die alone.”
After a middle-of-the-night medical crisis at the hospital and a hard-fought transfer to CT Hospice, Enders’s mother lived “12 more midnights.” She was taken outside to greet friends docked on their boat, drank an afternoon cocktail, had her hair done, visited with literally hundreds of family and friends and “had great, great care.”
Peer’s son, who died the day before Thanksgiving, had the gift of one final good week as well. It sounds strange to say he enjoyed the last week of his life, Peer says. But he did.
The Connecticut Hospice
100 Double Beach Rd, Branford (map)
(203) 315-7500 | help@hospice.com
www.hospice.com
Written and photographed by Kathy Leonard Czepiel.
