Supporters of Arkansas Hospice Prove Little Things Make Big Differences

Evangeline de Sambourg loved to sing. Wherever she went, the 3-year-old provided a stirring soundtrack to her adventures. “She marched to a different beat, that’s for sure. She was fearless,” says her mother, Holly. “She was not afraid of anything. She would just go up to anybody and say ‘Hi! I’m Evangeline.’”

So when Evangeline was diagnosed last year with a rare and aggressive brain cancer, her parents couldn’t stand to have their little girl’s final days be anything less joyful than her life had been. They were referred to Arkansas Hospice to help make this happen.

“Our goal for our daughter was to make her as comfortable as she could possibly be,” Holly says. “We saw so many doctors, and a lot of them were condescending, like we were just some dumb parents that didn’t know anything.

“When the hospice came in, we said ‘we do not want her to be in a hospital, we want her to be at home, we want her to be comfortable, we want her to be surrounded by her family.’ They were absolutely amazing; everything that we wanted they said OK.

“Our nurse, the director, the social worker, the bereavement counselor even came to the – we didn’t call it a funeral, we called it a celebration of life. I was really surprised to see them there, but they said we’re here for your family.”

One of the hard facts of life we all learn is mortality, and while we often suspend this reality in the recesses of our consciousness, what each of us wants in our own inevitable end isn’t all that different, fundamentally. We want to be comfortable and accompanied, unafraid and loved, right up to our final moments, with the awareness that what we are experiencing simply completes a natural circle.

For nearly 4,000 patients and more than 6,200 loved ones last year, Arkansas Hospice was the conduit for such a transition. Founded in 1998, the organization has grown to provide services in 30 counties through three in-patient centers, as well as in patients’ homes and nursing homes throughout central Arkansas.

“Hospice care is a human right,” says Donald Wood, executive director of Arkansas Hospice Foundation. “It is the social justice issue of making sure every single person on this planet has access to great and free hospice care, because everyone deserves to die with dignity, in comfort and in peace.”

Despite studies that show patients live better and sometimes longer under hospice care than other care, Arkansas Hospice’s biggest hurdle is public perception, particularly given society’s queasiness over dying and death. Try discussing end-of-life at your next social function, as Wood has, and see just how taboo the subject is.

“When I tell people what I do for a living, or if they didn’t know what a hospice is and I explain it, they’ll say, ‘I don’t know how you can do that or talk about that,’” he says. “Obviously, the death of anybody is upsetting, but what’s more upsetting, and what people don’t think about because we aren’t having these conversations, is if my loved one died without dignity or was in pain. That is much more upsetting to me.”

Don Bragdon of Russellville has been under home hospice care for almost two years, roughly four times the usual life expectancy.

“I guess I’m fooling them,” he says with a soft chuckle. “I shoulda been dead by now, I guess.”

An aortic aneurism more than a decade ago touched off an exhausting series of health issues and a dizzying array of doctors and specialists. When finally a second aneurism was located on his heart valve, surgical options were more than his body could take.

“The doctor said with my health and age, I’d never make it off the table. So I decided then, well, that’s it, I’d just go until it lets loose,” he says.

Bragdon has never been one to mince words, and at 79 he’s not about to start, whether on the isolation that comes with declining health or the virtues of Arkansas Hospice.

“I noticed, up until two years ago, people were around,” he says. “I had a lot of friends, boy, they’d come around if they wanted something welded or fixed. When I got to where I couldn’t do that much anymore, all of a sudden a lot of my so-called friends, they didn’t come around anymore.

“But I tell you what, that hospice, they are fabulous. The nurses are great, they know what they’re talking about, you can talk to them and they just care about you. To me, they’re a lot better than the hospital, really. It helps me just because it’s somebody to talk to and they’re so good, they’re really great. It’s nice having them.”

It takes a special professional to provide committed, loving care knowing that regardless of medical skill, the patient is still going to die. For 20 of her 23 years in nursing, Cheryl Kendrick, RN, has been exactly that kind of professional.

“It’s an honor to be with those families and those patients during the most difficult time of their lives,” she says. “It’s a very sacred time; just being there and knowing that I can help them through that, making sure they’re comfortable, providing physical and emotional support. It is a privilege.”

Kendrick didn’t intend to go into the field, but once recruited by her uncle who was a hospice nurse, she fell in love with it and has never considered leaving. Most of what she learned was on the job alongside her uncle, both medical and coping skills.

“In nursing school at that time we got about a paragraph of hospice education,” she says, adding that nursing schools today provide more training and shadowing. “It can be difficult balancing and maintaining healthy professional boundaries, and that came with time. It is very easy to get attached, and maintaining those boundaries, not only for myself but for the family, is crucial.”

One way Arkansas Hospice helps nurses and other staff members deal with the many end-of-life facets is by providing a team approach to care, thus spreading out the emotional, spiritual, medical and other needs of patients and their families.

“Our hospice teams are made up of registered nurses, social workers, chaplains, physicians, certified nursing assistants and volunteers,” said Judy Wooten, Arkansas Hospice president and CEO. “We also have bereavement specialists, which is one of the unique things about Arkansas Hospice care. A lot of people don’t know that we provide bereavement support to family members for a year after the patient dies. That gets them through the first birthday and the first anniversary and the first holiday season where the absence of that loved one can be really acutely felt.”

Arkansas Hospice’s impact is particularly significant among low-income and underserved populations. The majority of its patients are Medicaid eligible, but more than 200 patients have been served over the past three years with no means to pay at all.

The group has also led the nation in outreach and innovation; its dedicated pediatric services were the first in Arkansas and have grown from serving 12 patients in all of 2013 to 12 per day. The group’s groundbreaking We Honor Vets program served 850 veterans during the 2015 fiscal year alone, an effort supported by an on-staff accredited Veterans Administration claims agent to help veterans and their families understand and access the full range of benefits that they are entitled to.

Recently, the organization also funded a pilot program to understand ways to better reach into the African-American and Hispanic communities in Arkansas, both of which utilize hospice services substantially less than their white neighbors. With each of these efforts, the group educates, informs and dispels misconceptions about hospice care.

“One of our big pushes as an organization is to encourage people to do their own advanced care plan,” Wooten says. “Putting your wishes in writing tells loved ones and physicians how you want to be treated if it comes to a point where you can’t make their own decisions. We really are working to get educational information out there to try to change the culture around discussions about end-of-life issues.”

An event that combines this education with fundraising critical to sustaining the organization’s mission is A Fair to Remember, set for Sept. 29 from 6:30 p.m. to 9:30 p.m. at Little Rock’s Metroplex. The fair-themed, come-as-you-are event, featuring food, drinks, games, auctions and live music, is regularly ranked the “most fun” among fundraising events on Little Rock’s social calendar. And as noted by Sharon Heflin, longtime operations and foundation board member, the frivolity helps deliver a serious message.

“It takes people time to realize that hospice doesn’t mean you’re just giving up, it means that you’re helping your loved one live the rest of their life,” says Heflin, a caregiver to three family members over the past decade, assisted with each by Arkansas Hospice. “You know, I was kind of squeamish about the word ‘hospice’ when I was younger; it meant the end. But I’ve learned since then how much the whole hospice experience helps the patient and patient’s loved ones and caregivers. I think we’ve come a long way, but I also think more education is needed to give people the knowledge of what a hospice does and how it can benefit the patient and the family.”

Heflin’s good friend Rick Fleetwood, a fellow A Fair to Remember volunteer, noted that in addition to supporting the cause of hospices in general, it’s important for people to support Arkansas Hospice in particular because of the level of excellence and innovation the organization represents.

“My mother passed away in 2012 and I did not use Arkansas Hospice and had a rather bad experience,” he says. “I’m kind of the flip side; I had a bad experience, so I wanted to find out who’s doing the good work and try to help them. That is why I am working to try and help Arkansas Hospice, because they do such a wonderful job.

“When you’re faced with that situation, you need someone who’s going to be in your corner. Arkansas Hospice is one that you can count on, that you can believe in, that will be there for you. And that’s important. When you come into the world, it should be happy and joyful. And when you go out, it should be the same way.”

A Fair to Remember will be held on Sept. 29. For more information or to purchase tickets, visit AFairToRemember.org or call (501) 748-3306. For more information on hospice care with Arkansas Hospice, visit ArkansasHospice.org or call toll-free at (877) 713-2348.

On Rick: All clothing by GREENHAW’S MEN’S WEAR; On Sharon: Escada dress, Alexander McQueen gloves, Lulu Frost Jewelry all from BARBARA/JEAN. Hair & makeup by Vanessa Thomas at FEINSTEIN’S; Styling by Angela Alexander; Special thanks to 109 & Company, a cocktail bar and lounge on Main Street.

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