Virginia Clifford remembers the reactions she'd get when she mentioned she was involved in a first-of-its kind effort in Toledo to start a hospice program.
"I went to one event and told a woman there what I did and she turned and walked out of the room," Ms. Clifford said.
Talk of death was just not something done in polite conversation.
Hard to say why. After all, everyone does it. Die, that is.
But the whole concept of dying with dignity, without pain, in a comfortable environment surrounded by family and loved ones, is still a new concept for some. For much of the 20th century, dying was the business left to hospitals. You got old and sick, you went to the hospital, and you died there. But even then, many thought there had to be a better way.
If death was inevitable because of a terminal illness, why not try to make a person comfortable and pain free? Let them spend their remaining time at home or in a facility that specializes in taking care of dying patients.
That was the thought of Ms. Clifford and others in Toledo in 1981 when, thanks to a small donation, they decided to start Toledo's first hospice program. It was tough.
"There was no reimbursement at all. We did it by the seat of our pants," Ms. Clifford recalled. "We had three nurses, a medical director, and a psychologist."
This year, Hospice of Northwest Ohio celebrates its 25th anniversary, marked tomorrow by the official dedication and naming of its newest inpatient facility, the Virginia Clifford Hospice Center.
Ms. Clifford, now retired, is amazed at how far the organization she helped start has come.
The Detroit Avenue facility will be named for Virginia Clifford, who began the program when death was an impolite topic. Now, its philosophy has been described as 'Lamaze for the dying.'
In its first year, hospice cared for 90 patients on a shoestring budget, spending $60,000. The program had its headquarters in the old Flower Hospital building on Collingwood. It was so rundown that it had "paint coming off the walls." From this building, Ms. Clifford's small group of nurses fanned out across the Toledo area, caring for terminal patients.
"We saw people in the middle of the night in snowstorms," recalled Judy Seibenick.
Ms. Seibenick is now executive director of hospice, but back then she was one of the three hospice nurses.
From that small group of employees, Hospice of Northwest Ohio has grown into a 380-employee entity that operates a large home-care hospice program. In addition, it has two inpatient hospice units: a 25-bed facility in Perrysburg Township that opened in 1995 and its 24-bed Toledo facility - to be named tomorrow for Ms. Clifford - that opened in 2004 along Detroit Avenue near the Medical University of Ohio.
Last year, hospice cared for 2,274 patients, with about 85 percent of those cared for at home or another location, and most of the rest in one of the two inpatient facilities. Hospice, a nonprofit organization, has a $23 million annual budget.
Like Ms. Clifford, Ms. Seibenick is surprised how far hospice care locally has come.
"Now, hospice is specialized," she said. "But back then, it was seen as grass roots, alternative, just hand-holding. Today it's a legitimate piece of the health- care continuum," she said.
The hospice philosophy locally and nationwide has been described by some as "Lamaze for the dying." Like birth, death is a natural process not to be feared, hospice advocates say.
Hospice care is often referred to as "comfort care," provided to someone with a terminal illness who is expected to have six months or less to live.
Molly Burks couldn't agree more with the description of "comfort care."
Her brother, Harold Jaegle of Toledo, is a patient at the hospice facility on Detroit Avenue.
"If you don't have hospice take care of your [terminally ill] loved ones, you're doing wrong. They do so much," Ms. Burks said.
Her brother, who has terminal lung cancer from working with asbestos, first had hospice care at home for several months and recently entered the inpatient facility. A stickler for detail, Ms. Burks was ready to find fault with how hospice workers would take care of her brother, who doesn't have much money.
But she was stunned with the devotion hospice workers show. Little things like sitting with her brother while she leaves to run errands really mean a lot, she said.
"There isn't one thing I can find wrong with it, and I'm a person who can find wrong," she said. "They bend over backwards. I've told all my family, this is where I want to go if I get sick."
She and her brother especially like the care provided by one of the hardest-working hospice employees: Sam the dog. Both hospice facilities have dogs that wander around the facility, eager for some petting or some forbidden treats. All patients are warned not to feed the dogs, lest they become too fat. It's not working too well; Sam is quite hefty.
Ms. Burks' brother was lucky. He entered hospice care months ago and has been pain-free ever since.
Unfortunately, just as it was in 1981 when Hospice of Northwest Ohio started, many patients who ultimately end up at hospice do so only hours or days before death. In those cases, it's sometimes too late to provide a comfortable environment for the patient.
"People still come to us suffering and in pain," Ms. Seibenick said, adding that many families, once they've experienced hospice care, say they wish they'd turned to hospice earlier.
Ms. Seibenick is hoping her organization can help change attitudes toward hospice care. One goal is to open an "education institute" that would train health professionals about hospice care, as well as offer education to the public.
Hospice of Northwest Ohio also might expand into "palliative" care, which is similar to hospice, but with the idea that those in palliative care wouldn't necessarily be terminal.
Ms. Clifford said once people learn about hospice, or experience it, they're more receptive to it. That's the case today, just as it was early on, she said.
As an example, she finished the story about the woman who once turned and walked away from her when hospice was brought up.
"She was later one of our patients," Ms. Clifford said.
Contact Luke Shockman at: email@example.com or 419-724-6084.
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