Wilmington, NC – Barbie Cowan still has some regrets about the death of her father-in-law, Arnold. When Arnold became very sick in early 1997, the Cowans were caught up in a whirlwind of doctors and decisions, most importantly how to provide Arnold with a comfortable and dignified death. Prior to Arnold's illness, the Cowans knew nothing about hospice. So when his physician suggested hospice care, everyone agreed. But Arnold died just 24 hours after they made that decision. Barbie says she regrets not knowing about hospice back then because it felt like death was happening to everyone, not just Arnold.
Five years later, the Cowans were faced with another difficult medical situation but were well-acquainted with hospice care. Dee Cowan, or Grandma Dee as she was known to the family, was Arnold's wife. Dee ran a furniture store in Jacksonville, and liked to express her hidden artistic talents by constantly rearranging the furniture in the store. When Dee became terminally ill, the Cowans got a chance to make the end of life journey for Dee better than it had been for Arnold. The main reason was hospice.
As Dee was dying, the Cowan family was able to guide many of the situations that had seemed out of control when Arnold was dying. One big difference was the place where Dee spent her final days. Unlike Arnold, who died in the hospital, Dee passed away at the Life Care Center of the Lower Cape Fear Hospice, supported by hospice staff and surrounded by her loving family, including Barbie.
[Cowan] The care facility is completely and wholly about making the last stages of life comfortable and dignified. And that's a gift that's given.
As the only inpatient hospice facility in southeastern North Carolina, the Life Care Center is a very special place. Nestled among pine trees, it looks more like an art museum than a medical facility. Walk inside, and you'll find soothing colors, cozy furniture, and lots of windows and light. There are spaces to eat, talk, play, and reflect. It is a warm and inviting place.
In contrast to the comforts of the Care Center, an overwhelming majority of Americans still die in hospitals or nursing homes. But hospice is changing that. Hospice began decades ago in Europe as a grass roots organization to help terminally ill patients die at home, since most were dying in hospitals. Today, more than half of all patients under hospice care die at home. But for those that cannot or do not want to die at home, many are choosing facilities like the Care Center.
For Barbie Cowan, the Care Center brings back many good memories. She loves the family kitchen, a common space that bustles with activity. There's a TV and a play area just outside, which is helpful when children come to visit. Barbie says she would often find someone in the kitchen who was going through a similar situation, which made it easy to talk, even if they never got into specifics.
Another one of her special places is the Solace Room. It's small and quiet, a place to be by yourself and think or pray or meditate.
[Cowan] I was able to come to grips with a few emotions I wanted to be to able express but hadn't quite been able to collect, so this room helped me do that, and be able to get it said the way that I wanted to say it.
On the table is a journal, where patients or family members can write down their thoughts. The book makes for emotional reading. One writer asks that her loved one die a peaceful death, and that she find the strength to carry on. Barbie felt like she was intruding when she first read the journal, but soon realized that it was there for a reason.
[Cowan] I found as I read through the book, I would think to myself, that's exactly what I thought, or I don't think I could have expressed that any more beautifully. I'm glad that I was able to read that because it says what I've been trying to say or wanting to say and hadn't been able to say as well.
The best spaces in the Care Center are the twelve patient rooms. The first thing you notice when you see one is that it's designed to accommodate a family, and not just the patient. It's big and roomy, like a private suite. There's a recliner, and a couch that makes into a comfortable bed. The best part is the huge bulletin board at the end of the room that faces the patient and covers most of the wall. It's so big, you could tack up an entire lifetime of photos and other memorabilia.
Because of its focus on end of life care, the Care Center's rules are much different than most hospitals or nursing homes. First, there are no defined visiting hours. You can spend as much time here as you want, whenever you want. And children are always welcome, all the time, regardless of their age. Best of all, you can bring your pet.
[Cowan] You're not going to take a pet to a hospital, but at the care facility you can, and so you include those things that are most precious to you in the end of life process.
One often told story involves a patient who owned a horse. Hospice staff made it possible to bring the horse to the Life Center and back the trailer up to the patio door so the patient could say goodbye.
Although the Care Center is a unique building in its own right, it's the people that make it so special. Because the staff are focused on making patients comfortable instead of trying to cure them, you rarely find them running around taking temperatures, scribbling on charts, or waking patients up in the middle of the night. That allows for quiet, mostly uninterrupted interaction. Barbie says that when someone is caring for your loved one the same way you would, it creates a special bond that makes communication easier.
[Cowan] You can ask questions. You can perhaps hear answers that are a little bit easier to understand, a little bit easier to hear in an environment that is warm and inviting and that you've helped be a part of creating.
As Care Center staff interact with patients and family during a difficult time, they become an important part of the end of life journey, much like family. Years later, people will remember the names of staff members who helped their loved ones and consider them friends. That includes everyone from volunteers to medical staff. Barbie recalls talking one evening to Michelle Clancy, the medical director of the Care Center.
[Cowan] She and I were just talking, and I began to weep, and she began to weep, and I wasn't surprised... she's that type of person, but this is that type of place. There's just that level of understanding that whatever you're experiencing, you're free to experience it in whatever way you have to to get through it. If it's cry sometimes, that's fine. If it's laughter, that's fine. If it's solitude, that's fine too.
As Barbie is about to leave, she steps into the empty room where Dee spent her last hours. There's a courtyard facing one side of the room, and a patio on the other side that is visible through large windows and a glass door. She says she's glad the Center was designed so that light is always shining through its spaces.
[Cowan] I think it just reminds you that the world continues to revolve, and as you are dealing with the end of a life, there are other lives that are just beginning. And that's the way it's supposed to be.
For WHQR Public Radio, I'm Steve Meador.