Pulse

Hospice care eases journey

Pulse editor
Carol "Zoe" Klingler, left, a nurse with Hospice Atlanta, listens as Gladys W. Franklin describes how she's feeling.

When Catherine Radle, RN, MS, tells people that she's the director of The Hospice Atlanta Center, it's a real conversation stopper.

"They ask me how I can do that and isn't it a sad place to work?" she said. "I tell them that we cry a lot, but that we laugh a lot, too, and that it's a privilege and a blessing to be able to work here."

With its blue pansies, lush landscaping and cottage-style architecture, the Hospice Atlanta Center feels more like a home than a hospital — and that's exactly the way the staff wants it.

"For our patients, this is their home at the end of life," Radle said. "Their families and pets have 24/7 access. We have children camping out on the floor, people singing around the chapel piano, or someone cooking up a favorite recipe in the kitchen."

Families gather for private ballet recitals, tea with a spiritual adviser or life-appreciation services.

"What we're watching is a patient and family coming to grips with dying and loss, and to be at peace. Our job is to provide support and to create an environment for that to happen," Radle said.

"People have this Grim Reaper image about hospice care, that if they agree to it, they're as good as dead," said Carol "Zoe" Klingler, RN, CHPN, a nurse with Hospice Atlanta, a division of Visiting Nurse Health System. "We do nothing to hasten or postpone death, but when a disease can't be cured and someone needs comfort and palliative care, that's when we do our best work. Our job is to enhance life as long as God gives it."

Klingler and Franklin share a hug.

Klingler has found that when someone's symptoms and pain are managed, their quality of life can actually improve and that the end-of-life time can be very rich, with people doing what they want to do, being with family and friends, telling stories and making memories. "People who have lived a life have too much wisdom to die without imparting it," she said.

One of the few positive outcomes of Terri Schiavo's case is that more people have been asking questions about the nature of hospice care, giving providers a chance to dispel some of the myths. During Schiavo's last week of life, the National Hospice and Palliative Care Organization received more than 6,000 calls, as compared to 100 normally.

More than a million Americans receive hospice care each year. It is geared toward patients who have been diagnosed with six months or less to live, but patients who live longer continue to receive care. It's not just for cancer patients; hospice care can be for anyone coping with the end stages of chronic illness, such as emphysema, Alzheimer's disease, HIV/AIDS, cardiovascular and neuromuscular diseases. About half of hospice patients are served in specialized centers, but the other half remain at home.

"Studies show that people, in general, aren't afraid of death, but of dying in pain and alone in a hospital or some other unfamiliar place," said Maureen M. McCarthy, administrator for United Hospice. Most hospices send a team of caregivers, including doctors, nurses, social workers, chaplains, therapists, volunteers and home health aides to the home to treat the physical, social and spiritual needs of a terminally-ill patient.

Many people think it's expensive but, in fact, those older than 65 are entitled to the Medicare Hospice Benefit, which covers most expenses. Medicaid and many insurance companies also cover services. Nor does hospice care end with the death of the patient. Many organizations continue to counsel the family for months afterward.

"Hospice care is different. Our unit of care is not just the patient, but his caregiver and family," Klingler said. "Everyone is suffering, so we spend a lot of time educating people about the process and what to expect next.

"Encouraging overwhelmed caregivers that they can do it is one of the parts of this job I love. My goal is that the family will be able to say with pride that they gave this gift to their loved one, and that hospice helped them do it."

Since working in hospice care, McCarthy has been most touched by the compassion of the staff. "Obviously, it takes a nurse with clinical skills, but we also look at their heart," she said. "A few years ago, one of our patients wanted to marry his longtime girlfriend. We were able to control his symptoms so that he could walk her down the aisle. That meant so much to him and we were sure going to try and make it happen."