Hospice nurse helps change dying process for the better
Andrea Clark believes that people are not so much afraid of dying as they are of dying alone or in pain.
And she should know.
The 45-year-old mother of two has been a hospice nurse in the Lansing/Leavenworth area for most of the past 15 years.
But it wasn't always that way. Clark met her husband, Michael, when he was stationed in her native Germany. At that time, Clark was an oncology nurse.
Even then, Clark said, "I didn't like the way people were dying."
"I didn't like the way some people were dying alone," she continued. "I didn't like that some people were being treated and treated, when it was clear that nothing would change the outcome and nobody would tell them that. They just kept getting the treatment and getting more and more miserable. I always thought there must be a better way of dying."
And so, in 1991, when Clark and her husband moved to the Lansing area, she decided to do something about it.
She became the patient coordinator of the first hospice to ever operate in the area, Hospice of Leavenworth, and was instrumental in changing that hospice from a volunteer organization to a fully Medicare-accredited hospice.
Five years ago, she joined the operations of Catholic Community Hospice, continuing to serve the hospice needs of the people in the community she now calls home.
Clark has found a lot to like about the Lansing area, especially the "kind of safe, secure feeling you get from the fact that most everybody knows everybody."
"I think it's attractive because it's close to Kansas City, so you can do things - big-city stuff - if you want to," she said. "But you can then come back home to the Lansing-Leavenworth communities, which have that small-town flavor that people like.
"I see the communities as very close-knit; they really stick together. And the residents like to get things done by local people," Clark added. "That's what I like about our hospice - with me living in Lansing and Eileen Parks in Leavenworth, we have local nurses available to care for this community."
"I've heard stories about nurses at Kansas City-based hospices saying they can be there in two or three hours," she said. "That is unacceptable. Unacceptable.
"I schedule two to three visits a week with each of my patients, but I can stop by any time they need me to. When you're local here, you can just drop by, and it reminds our patients that they're not alone - that we're there for them."
Not just for cancer patients
Even after 15 years providing hospice to the area, however, Clark still finds that a lot of people don't know much about it.
Most people - even many doctors - just don't know that with most life-limiting illnesses, patients can choose to remain at home or in their own care facility and receive hospice services instead of going into the hospital.
Most hospices treat patients with illnesses ranging from Lou Gehrig's disease and Alzheimer's to final-stage kidney and lung disease, for example.
And since Catholic Community Hospice nurses carry laptops on which they update patient's charts with each visit, the on-call nurse has instant access to the status of each patient - even those that are being seen by other nurses.
"The laptop technology gives you access to all the patients that are in our database really quickly," said Clark, "and when you're on call that's very important. If there's a question, you can see what all the other team members did with that patient that day - it's all in there."
Pain management experts
But if there's one area in which Clark feels a hospice needs to excel, its in pain management and symptom control. The fact that all Catholic Community Hospice nurses are palliative-care trained means they have all been specially educated and tested in pain and symptom control.
That means that they are able to make patients at least as comfortable at home as they would be in a hospital - and often more comfortable.
"I believe that pain management is of the utmost importance," said Clark.
"People are scared of dying alone and dying in pain, and I think lots of people still do so unnecessarily."
But it doesn't have to be that way - even when the patient needs more than simple physical pain relief can offer.
"As a nurse," said Clark, "I can tell you that it is absolutely essential that you address every facet there is of somebody's life. Because I can be excellent in pain management, I can be excellent in trying to control your physical pain, but if your spiritual and emotional pain isn't addressed, you might still be suffering."
And that's where the hospice team approach comes in.
"There's a big difference between being in pain and suffering," Clark explained. "Dying is not just about physical pain; it's about a lot of other issues, too. And I am certainly glad that I have a chaplain and a social worker behind me to address those because it's not a one-man show."
Catholic Community Hospice patients also benefit from the generosity of local volunteers, who donate their time to serve as part of the hospice team.
"We usually assign a volunteer to each patient and their family," said Clark. "These people either stay with the patient so the caregiver can take a break, or, in the case of nursing home patients whose families live out of town, they go and visit the patient on a regular basis."
Is hospice right
Clark is the first to admit that hospice is not for everybody.
"But if you have the desire to be at a place you call home, and not to be surrounded by high-tech machinery - just to have this private atmosphere - then hospice is the right thing for you," she said. "If you feel that aggressive treatment has nothing else to offer and you would prefer comfort measures instead, then hospice might be right for you. If you are ready to let nature take its course and live your remaining days with dignity and as you envision it, then hospice might be right for you."
Clark just experienced hospice from a new perspective recently, when her mother-in-law made the trip from New York to Lansing in order to spend her final days with her son and his family. Clark admits that even for her it was at first frightening to consider.
"I was very concerned, personally, to have her die in my house. Even though I am a hospice nurse, I was worried, because I have two children - a 10-year-old and a 3-year-old - but it turned out to be a really good experience for the family. We had some very personal, even spiritual talks that I don't think would have taken place in the hectic atmosphere of a hospital. My children saw a little glimpse of the entire circle of life and, believe it or not, we even had a few real good laughs together.
"And now, after that experience, I feel more than ever that it's important for people to know they have a choice about how they die.
"I let the patient and their family be the guide; they remain in charge. The patient decides as long as possible what he or she wants or does not want.
"I listen to the patient," Clark said, "but I think in the hospital, a lot of those choices are taken away from you.
"With hospice, you have many more choices about how you want to spend your remaining days."
Anita McSorley is associate editor of The Leaven, the newspaper of the Archdiocese of Kansas City in Kansas.