Cynthia Emiry Roy wants to talk to you about death: “I believe it’s a topic we need to talk more about, because while we’ve come a long way in terms of being a death-defying culture, we have a long way to go,” says Roy, the President and CEO of Regional Hospice, located in Danbury. She has very definite ideas about death, and she’s committed to making end-of-life care joyful, uplifting and fulfilling for patients, staff and family, no matter what their age. 

Do It Differently
As a licensed social worker, Roy has worked in hospice for 23 years. She turned her attention to building a standalone inpatient center in 2015 after determining that at-home hospice care may not offer the full range of services some families need. At the time, the only options in the area were at-home hospice care or hospice beds in hospitals.

“When I came to this work, I had a number of patients who were young, and there really was no place to send them,” Roy remembers. “I had a patient with terminal breast cancer who was in her 40s; she had three teenaged girls, and her husband had predeceased her on a basketball court the year before. Dying at home was a wonderful concept, if there were other caregivers there to help the girls through the process. But in this case, they were all alone. I remember coming back to the office after visiting her and saying to my colleagues, ‘it has to be done differently. This is ridiculous. We have no options for families.’”

A Holistic Model
Most U.S. hospices in the northeast are operated by nurses and follow a medical model. Roy, a family therapist by training, wanted to create a more holistic model. “When you look at hospices around the country,” she says, “the nurse is the central figure, but with our team, every member is important in bringing their relevant expertise to patient care.” 

When a patient is admitted to Regional Hospice, for example, it’s a joint admission, meaning that a social worker and a nurse do the visit together. Due to the added staffing expense, most hospices don’t do this, but Roy believes double-admission sets the tone for holistic hospice care. 
“Often a family would say they didn’t need a social worker because they had no social service needs,” she says. “Sometimes people don’t understand that social workers are therapists, and that the dying process is an emotional one. While medical needs are extremely important, the emotional needs of the patient and family can be much greater.”

A Beautiful Experience
Regional Hospice has been designed to meet the physical, medical, emotional and spiritual needs of patients and families, and no detail is too small for Roy’s attention. “You never forget the moment your loved one dies. It’s imprinted in your brain forever, so it has to be done right; it has to be done in a beautiful way. It’s very important that we shape that experience with the family.”

Roy came to Regional Hospice in 2007 precisely because the board of directors was supportive of her innovative ideas. Regional Hospice’s in-patient facility, the Center for Comfort Care & Healing, opened in 2015 after Roy employed a feng shui expert to ensure the energy flow worked for the space. Its serene “hotel-and-spa” vibe is meticulously cultivated, with features that set it apart from other hospices around the country. Patient beds can be moved anywhere inside the building and throughout the facility’s grounds and garden, ensuring fresh air and sunshine can reach even the sickest patients. Rather than hiring “health care chefs,” Roy set up a gourmet kitchen open 14 hours a day (and serving hundreds of meals a week) to prepare and serve anything patients and their families desire. Teatime takes place every afternoon at 3, serving homemade, “world-famous” peanut butter cookies and other treats, as well as coffee and tea. And in addition to world-class health care and emotional support, Regional Hospice has a full-time licensed massage therapist on staff who practices aromatherapy with hydrosols; the facility also offers Reiki, hands-on healing and energy work to patients.

As much as they’ve accomplished, Roy and her team feel there’s still more to do, so now they’re building a welcoming final home for the youngest patients they serve. 

Caring for Kids
About 10 years ago, Regional Hospice started its perinatal hospice program, an in-home program for mothers who know their babies may be born with a limited life expectancy. They begin working with parents when the diagnosis is first received, walking them through the journey until the baby is born, staying with them through the birth, the subsequent death and the painful grieving process. 

Because of the program, Regional Hospice started caring for children. On average, 150 to 300 children in Connecticut die each year due to terminal illness. “If it were even just 10 kids, we should have support available to them,” says Roy. “It doesn’t have to be a particular number to make it worthwhile.”

Regional Hospice has a dedicated pediatric nurse who manages all of the care for the children referred by pediatric hospitals. After a few children stayed in the Center, Roy and her team saw the value in giving them their own patient suite area, “just so kids can be loud and run around—we allow that throughout the whole building, but we thought it would be nice to have an area they could call their own.”

Regional Hospice’s children’s wing—named the North Star pavilion—began as an idea a few years ago. Although Roy knew insurance companies didn’t reimburse nearly as much as they should for pediatric hospice patients—despite the critical need for respite care for families with terminally ill children—she and her team were determined to make their vision a reality. On average, Regional Hospice cares for sick children for about two years, much longer than the usual 30 to 60 days for adults. This is possible because unlike the regulations for adult hospice care, the state of Connecticut allows children to receive hospice care while concurrently receiving ongoing treatment for their illnesses.

“If a child has a terminal illness and the family knows that the child is going to die, they may still want to do another treatment in hopes of a miracle,” says Roy. “It’s an amazing program and I think it’s one we need nationally because it allows families to have hope, while providing the necessary services and support patients need at the end of life.”

There are few pediatric hospice facilities because the need is significantly less than in the adult population. Additionally, Roy notes, many families keep their children at home until the very end because there aren’t resources available to them. 

“I think the real issue is financial,” she says. “The insurance companies will only cover the acute therapy, not the respite care. And that’s something our pediatric unit will do differently: We will have a respite fund for families when the insurance doesn’t cover the cost. This way, we can make sure that patients and families get what they need.”

The North Star pavilion will be an 18,000-square-foot, four-suite facility on the second floor. It will have patient suites, living rooms, play areas and a library. Designed by renowned architect Roger Ferris, it has many unique and charming touches, including “starry” ceilings that provide a planetarium-like view of the night sky that can be turned on and off at any time of day. Some of the children who will stay in the wing are too sick to know if it’s day or night outside. Roy hopes the starry ceilings show them “the sky is infinite, and life is infinite, and you can go anywhere. Life continues long after we leave this planet.”

Changing the Conversation
For Roy and her team, hospice is about living, not dying. She strives to help patients make the most of the time they have left, and she wants to support their families as they move through the transition of end of life. 

“Hospice is not giving up,” she says. “You always hope for a miracle, you always hope for the best. But I would love for people to see the culture of death change. Death is like birth: You’re creating an experience that the family will never forget; they’ll be impacted by this for the rest of their lives. We want to ensure it’s a beautiful experience where they can look back and say, ‘My loved one received the best care possible.’”

For more information about Regional Hospice and the North Star pavilion, call 203-702-7400 or visit RegionalHospiceCT.org.

Patricia Staino is a freelance writer and the managing editor of Natural Awakenings’ Hartford and Fairfield County editions. She can be reached at [email protected].