A parent losing a child to a terminal illness is a profound tragedy. In Connecticut and the surrounding New York geography near Regional Hospice’s Center for Comfort Care & Healing in Danbury, more than 350 children under the age of seventeen die each year. “Children who are at end of life need a space that empowers them to live fully until they die,” says Cynthia E. Roy, President and CEO of Regional Hospice.
To meet the needs of dying children and their families, Regional Hospice teamed up with the renowned architectural firm Roger Ferris + Partners to design the North Star pavilion, which will be the first purpose-built, in-patient children’s hospice in the Northeast and the fifth in the nation.
Cynthia E. Roy, MS, LCSW, CHA provided GIFF with more insight into the complex world of hospice for children, as well as, the North Star pavilion.
What is Regional Hospice’s mission?
“Our mission is to approach death by creating human connections and honoring each patient’s unique end of life journey. No two patients are the same, and no end-of life experience is, either. We’re advocates for innovative end-of-life care and encourage conversations around dying.”
Cynthia, how did you become involved with this initiative?
“I started at Regional Hospice in 2007 with the intention of building an in-patient hospice residence. At one time, patients who couldn’t die at home were left to choose between dying in a hospital bed or in a nursing home. I knew that things could be done differently—that a specialty in-patient residence provided a better option to support patients and their families at the end of life. Now, the vision is to create an in-patient space so that dying children and their families have options, too.”
What are some of the differences between Regional Hospice and other hospice organizations?
“We are a non-profit organization. So unlike for-profit hospices, we don’t have to answer to shareholders, which can easily compromise patient needs and care. Every donor dollar we receive goes to support our mission.
Another is our 36,000-square-foot in-patient residence, the Center for Comfort Care & Healing. To build the Center, we had to lobby the state of Connecticut to change antiquated in-patient hospice regulations. This was a long process, but in the end, our persistence paid off. The Center is a colorful, vital space where patients live fully until they can’t anymore. In order to truly appreciate it, you need to see it. I always welcome people to call and make an appointment for a tour!
Outside we have a 4,000-square foot Memorial Garden, full of perennial borders and beds. We have no thresholds on our doorways so this allows patients to enjoy the outdoors whether they are in a wheelchair or in bed—we can easily roll beds out to the garden. We believe that connection to nature helps to create a calm and healing environment.”
What is your goal for the North Start pavilion?
“The goal is to create a space that is thoughtful for the needs of dying children and their families, a place that is bright and engaging. Another goal is to provide critical respite services. Parents can leave their child with our medical professionals so they can take a much-needed break and care for themselves and other members of their family.
It’s important to know that respite care is a health benefit not often covered by many insurers, so the North Star will have a foundation that will offer relief for parents, siblings and loved ones from primary caretaking. Caregivers need a break—we can give it to them by creating a fund that covers respite costs.”
How did the innovative and respected Roger Ferris + Partners architecture firm come to be involved with the expansion?
“I was introduced to Roger Ferris by a mutual friend. We met for lunch and I immediately knew that we shared the same vision for an in-patient space for children. Roger’s design considers what a space must provide to a child who is dying. What do they need to see and feel in order to be comforted, loved and most of all fully alive?
Some highlights of the space will be:
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- The wing will have its own separate entrance, which will provide parents access to their child quickly and efficiently.
- Each of the four patient suites will feature expansive balconies that provide seamless connection to the backyard woodlands. We believe in the healing power of nature
- On the ceilings, there will be constellations that mirror the real nighttime sky. When children look up, they will see endless possibility, the magic of the twinkling heavens.”
What are the next steps in creating the children’s hospice wing?
“We launched our kickoff event for our public relations campaign on December 4th.
To help raise awareness of why this space is so necessary, we created an animation and picture book, Emily’s Last Wish, that tells the story of hospice through the eyes of a ten-year-old brain cancer patient. The character, Emily, is based on a real child who we cared for at-home and in the Center. You can watch Emily’s story on our website.
Right now, we are looking to raise $15 million dollars over the next few years to bring the North Star to life. A large part of that money will also go toward the respite foundation that I mentioned earlier.”
How can the public help to make the North Star a reality?
Visit www.EmilysLastWish.org or www.RegionalHospiceCT.org to learn about Emily and our motivations for building the North Star. Spread awareness about the need for a dedicated children’s hospice space and most important of all, make a donation in support of this incredible project!
To learn more about Regional Hospice and their North Star initiative, and to learn about Emily, visit: www.EmilysLastWish.org
