Since taking the helm of Danbury, Conn.-based Regional Hospice & Palliative Care in 2007, Cynthia Emiry Roy has taken the nonprofit hospice from a small business to an organization with more than $18 million in assets. Earlier this year she was named Entrepreneur of the Year by Western Connecticut University.
Regional provided more than 45,000 days of patient care during 2018. A high percentage of their patient population is younger and tend to be covered by private insurance rather than Medicare. The hospice operates a robust pediatric and perinatal hospice program that the company is in the process of expanding with the construction of a new pediatric inpatient pavilion, a 7,000 square-foot space with four patient suites slated to open in September.
“We have a niche market in that we are a concierge hospice, and that’s an important difference,” Roy told Hospice News. “We are not looking to have volumes and volumes of patients. We want to have a number of patients that can be cared for extremely well and whose families feel supported, and that has worked. Our model is very effective. It’s replicable, scalable, and it works in our community.”
The new pediatric pavilion will be an addition to the organization’s current Center for Comfort Care and Healing, a 36,000-square-foot, $14 million facility with 12 patient suites that include sleeping space for family members, a catering service, library, chapel, a spa, and a children’s playground as well as administrative offices. The facility is a licensed specialty care hospital. Regional plans to open a second center offering comparable services within the next 16 to 18 months.
Roy spearheaded the center’s development, which required a near-total rewrite of the state’s hospice regulations.
“The old regulations were 1977 rules that said you had to have a water fountain and a phone booth within a certain distance of a patient’s room, curtains the same dimension as the patient’s bed, and other requirements that were no longer needed,” Roy said. “And they didn’t contain best care practices or guidelines, so myself and a few others on the state level wrote new regulations for the Department of Public Health, which went through [Connecticut] House and Senate and was signed into law by the governor, but it took quite a bit of time to make that happen.”
Roy recently spoke with Hospice News about her organization’s growth, government advocacy and issues she believes the industry needs to address.
How did you accelerate Regional’s growth?
Organizationally it took a lot of blood, sweat and tears to make that happen. We did a lot of grass-roots marketing and educational interviews with physicians and with people in the community who are stakeholders and influencers to really get the word about why hospice and palliative care are so important and to emphasize how it makes a difference in the lives of patients and families.
The culmination of that work was our center, which we built five years ago. It has become our flagship, and it’s an opportunity for patients who need additional services or types of care that can’t be done in the home.
Patients can come to the center any time day or night. They can live here as long as they need to live here. Some come in for weeks or days; they may come in from the community for symptom management and then return home when their symptoms are more stable.
It allows patients to have a full continuity of care without ever having to go to the hospital. Everything is maintained within our organization, so from a readmission perspective it’s a huge improvement, because once a patient comes into our hospice they don’t need to go outside of our organization to receive care.
To facilitate construction of the center, you and your collaborators had to extensively revise your state’s hospice regulations. What needed to change?
Those regulations were written in 1977. Our regulations are 2012 rules. Part of the reason this is so important is that they now includes best practice guidelines, both in terms of clinical best practices and best practices for designing the structure.
For example the 1977 regulations required you had to have a pharmacist onsite 24 hours a day. Well that was in 1977 when pharmacies weren’t open 24 hours. We don’t need that anymore. Now some of the best pharmacists in the country are available by phone at all hours and can work remotely.
That was a clinical requirement that is also extremely expensive. For a hospice to have a full-time pharmacist on staff is a huge investment, and they may not necessarily need that. We have a 24/7 pharmacy that we use as a support system, and they help us with our pharmaceutical needs. That’s actually a more effective way to provide pharmacy to patients.
How did you engage legislators and the government stakeholders you need to work with through that process?
One of the most vital things we did was a grass-roots effort. We met with legislators individually and as groups. We did not hire a lobbyist for that program, and I found that the most effective way was to meet with legislators and have lunch or a cup of coffee and talk about why we were building our building and why the regulation changes were so important.
Most hospices in the state at the time were very much in favor of modernizing the practice regulations. We also have a wonderful state association here that supports home health and hospice, and they were a huge support during that effort.
As the leader of a nonprofit hospice, how do balance your business with your mission?
We run our organization like a for-profit business. We work very hard to have a break-even operation, and then any funds that we receive from donors go to fund our endowment and special programs.
I think any real nonprofit business that wants to stay in business for a long time should run that way, because you have to be able to cover your costs.
We work hard at having that individualized relationship with our patients and families, and it’s very successful. Our patients don’t want enormous hospices caring for them. They want to know who their nurse is. They want to know that if they call someone one the phone that person is going to know their nurse; they are not just going to call an 800 number to a call center in another city.
You said that donor funds are used to finance special programs. What kind of programs?
Donor funds often go to support our wishes programs for both children and adults. We fulfill at least one per month, and it’s a tremendous benefit not only to patients and families but also to staff who feel like they can do something concrete to give families a memory they will never forget.
One patient, who was dying of cancer in her 40s, wanted to take her 9-year-old daughter to see the Broadway musical Frozen. A donor help transport her to the event by limo, and the producers donated the seats and brought her daughter backstage. It was very exciting for them.
We also fund programs to help support patients who have no insurance or very limited insurance, and donor funds help us keep room and board costs at the center at a reasonable rate.
Lastly, we have an educational scholarship fund for staff, so if we have a certified nurse assistant for example who wants to become an R.N., we will help them fund their education.
As a hospice leader, what keeps you awake at night?
The things that keep me up at night are retaining staff, making sure that my employees have everything they need, that people are not getting burned out, and that we are able to provide supportive services to staff in a way that’s meaningful.
We try to do creative things like having a full-time massage therapist on staff who works not only with our patients but with our employees at no cost to them. We have outside therapists who do debriefings with our staff members at all levels so they have an opportunity to share what they are experiencing during patient care and also what might be happening in their own life that is impacting their work.
What concerns do you have about the industry at large?
One of the things we have to address as an industry is the nursing shortage. The average age of the nurses that come to work for us is between 45 and 65. They are an older population of fabulous nurses that have a wealth of education and experience, but one thing we need to look at is getting more nurses integrated and involved in end of life care much earlier in their careers.