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Hospice leader looks to make death just a part of life

By Chris Bosak | January 28, 2018
Danbury News Times

Cynthia Emiry Roy is not old, but she has created a bucket list and vows to check off an item each month.

She went skydiving in July and later this year will see the Northern Lights. Catching a home Cowboys game and driving across the country are also on that ever-evolving list. There are plenty of “small things” on there, too, to make her goal of checking a box each month more realistic.

“I don’t want to be 60 years old and dying and say: ‘Oh, I didn’t get to see the Northern Lights,’” Roy said. “I’ve learned from the people I’ve cared for, so last January I decided that every month I would do something I’ve never done before. The list is long and I’m still adding to it.”

Roy, 45, can speak of dying in such a casual way because end-of-life issues and changing the conversation about death is her life’s passion and work. She is the president and CEO of the nonprofit Regional Hospice and Palliative Care and was the driving force behind getting the state’s only private-room hospice care facility built in west Danbury in 2015.

To Roy, death and hospice are not words to be avoided. They should be used openly and comfortably so patients and their families can be prepared for what’s next.

“I’ve done other things in my career to help people, but I think I’ve come to what I believe in, which is helping people die with dignity in a way that I think is beautiful,” she said. “We’re helping people get through a difficult phase of their life and at a time that is really stressful for their family members. When I come here every day, I know I’m making a difference in people’s lives.”

Early experience with death

Roy said the path that led her to become a leading voice in hospice reform in Connecticut started at an early age. As a teenager, her best friend Lesley was dying of leukemia and, instead of avoiding the subject, Roy said they talked about it openly. They picked out a poem for Lesley’s headstone and discussed what her death would be like by reading Raymond Moody’s “Life after Life.”

“Most important was the spiritual connection we had as friends,” Roy said. “When it really comes down to it, I think the loss of my best friend was a pivotal experience in my life and steered me in a direction to where I wanted to help others.”

Roy also discovered through her experience with Lesley that hospice care needed to look different.

It’s what led to the Center for Comfort Care and Healing, the $15 million, 36,000-square-foot facility that Roy fought so hard and long to have built. The center includes 12 private patient suites, a library, spa, chapel, garden, teen room, youth rooms, indoor and outdoor play areas, and catering services from the in-house gourmet kitchen.

“I was here seven days a week when they were building. Everything from the paint colors to room selection to the sound of the music in the space, even the smells, it was all my vision,” Roy said. “I believed I could create an environment that could help people die beautifully. Our job, and take it personally, is we make it the best possible experience when people die.”

Turning around a nonprofit

George Mulvaney, Regional Hospice’s longest-standing board member, recalls the nonprofit going through rough times financially before Roy arrived 10 years ago as CEO in her mid-30s. Roy agreed to come on board under one condition: she be allowed to create a different type of hospice.

The board agreed and Mulvaney said the hospice has “blossomed” under Roy’s leadership. Indeed, it has grown from 20 employees to more than 150 and is an $18 million organization.

“She’s taken hospice to new heights. She was tenacious in getting the new facility built,” said Mulvaney, who owns Mulvaney Mechanical and Mulvaney Properties in Danbury. “Normal people would say: ‘That’s too big of a task to get legislators to change the rules.’ But not Cynthia.

“There were others involved, of course, but you need leadership at the top,” he added. “It was a major undertaking. She’s the one who keeps it all together. She’s also a nice lady and personable besides being a good manager.”

Mulvaney, at a public event, announced that Roy was “doggedly persistent.” The description makes Roy cringe to this day, but Mulvaney is unapologetic. “She really is,” he said.

As much as she shies away from the description, Roy admits Mulvaney is not totally off base. “When I believe in something whole-heartedly I will do whatever it takes to make it happen,” Roy said. “So that’s what I’ve done.”

Learning from patients

Roy loves to travel, so it is no surprise that out-of-the-way destinations pepper her bucket list. Her father worked for Pan American World Airways and the family, while remaining based in Connecticut, lived for periods of time in places such as Hong Kong and California. She estimates she lived in 10 homes by the time she was 13 years old.

She describes her mother as an “explorer who has been places most American women have never been.”

“Living abroad, you learn you don’t live in a bubble. You learn the world is global and there are a lot of interesting things and people to see and meet,” she said. “My parents instilled in me a love of exploring outside the American bubble.”

Her decision to start a bucket list was inspired by two young hospice clients she got to know. One, an energetic man in his 20s, went skydiving as a dying wish. Regional Hospice and Palliative Care, as it does for many patients, raised the funds to make the wish come true. The list of wishes the organization has granted is long and impressive.

Another of Roy’s inspirations was a 51-year-old woman dying of diabetes.

“We established a relationship and really a friendship in many ways,” Roy said. “We formed a bond. You can’t help but form bonds with patients and their families. Is it hard to lose patients? Absolutely. There’s no doubt. But I still believe that, at the end of the day, what they teach me and my colleagues and employees, is far greater than what we lose.”

Choosing her own path

Roy is not afraid to follow her passion and do what she feels is right, regardless of what others may say or advise.

When she decided to change her major at Boston University from business to social work, her father strongly encouraged her to reconsider. Not only did she switch to social work, she immersed herself in the field and accepted every field assignment no matter how sick the patient or tough the neighborhood. She remembers leaving visits and having to brush off cockroaches from her jacket before getting into her car.

“Work ethic is one of the most important things to me. In high school, I wasn’t an A-plus student, but I worked hard and got a lot of jobs,” Roy said. “I cleaned offices, cleaned houses, worked for an answering service. Nothing was beneath me. There was nothing I wouldn’t do. I took on any job. It was just part of my DNA.”

Roy earned a master’s degree in science from Columbia University and completed her clinical internship training at St. Vincent’s Psychiatric Hospital. She worked for the Buoniconti Fund, which raised funds for the Miami Project to Cure Paralysis, and attended major sporting events around the country to network and expand its donor base.

Roy returned to the Northeast to work for the New York City Chapter of the Alzheimer’s Association. At age 25, she was hired to run a hospice in Wilton and has made helping others deal with death her life’s work.

While at the Wilton hospice, Roy sat across from a nurse that she recognized, but couldn’t place from where. The nurse recognized Roy, as well.

“She said: ‘Yes, I know you. I took care of your best friend when she was dying,’” Roy recalled the nurse saying. “That was a turning point moment for me. I knew this was what I was meant to do.”

The awards and honors have followed Roy’s accomplishments. In 2016, she was appointed to YPO, or Young Presidents’ Organization, a prestigious global network of young chief executives. Last year, Roy won a gold-level Stevie Award for Female Executive of the Year.

Working with women

Roy has already created a legacy by building the Center for Comfort Care and Healing. She has decades of work life remaining and, while she does not have any concrete plans for the future, she wants to continue to work with women on a global scale.

Having been mentored by women herself, Roy is quick to accept requests for help from other women. Her organization sends money to a hospice in Tanzania, and seeing the huge impact a little money makes there has her thinking of expanding her reach.

“Perhaps in the second half of my career I’ll do international work in terms of end of life,” she said. “I can’t see myself ever not working in this field, but I may help others on a more global level.”

Roy wants to take on insurance companies to have them reduce deductibles for parents who have dying children. “That should be one less thing to worry about,” she said.

She is also considering writing a book based on her hospice experiences. “I have such amazing stories from my patients,” she said.

And, of course, Roy will keep making check marks on that bucket list.

“I encourage my employees to have work-life balance. I tell them: ‘Don’t miss your kid’s football game or don’t miss that lacrosse game.’ Because what do we do here? We take care of dying people,” she said. “Patients constantly tell me: ‘I wish I worked less or traveled more. Or I wish I had done more of the things I love to do. They put it off and put it off and then got terminally ill. That’s why my bucket list is so important to me.”

The writer may be reached at cbosak@hearstmediact.com; 203-731-338

 

Original story can be found online at: http://m.newstimes.com/business/article/Hospice-leader-looks-to-make-death-just-a-part-of-12527994.php