There are nearly 100 hospice programs in Ohio.
By JUDITH DULBERGER
YOUNGSTOWN -- Twenty years ago, the general public looked at Hospice of the Valley as a hand-holding volunteer-type organization.
"We do have wonderful volunteers still," boasted Ellen Pence, hospice clinical director, "but we also have 70 paid staff now."
Though the hospice movement, in general, and Hospice of the Valley, in particular, have grown dramatically over the past two decades (more 2,200 hospices nationwide and nearly 100 in Ohio), a number of misconceptions persist.
Hospice is about comfort and quality of life. The only eligibility is that a patient must have a terminal or life-threatening illness with a six-month diagnosis "if the disease runs its natural course."
However, if a patient lives longer, he or she isn't discharged, according to Pence. "As long as they still need our services, they can stay in our program."
There may be additional eligibility requirements for admission to "for-profit" hospice operations. But Hospice of the Valley is a not-for-profit organization and "we never say no," said Lisa Argiro, executive director.
There are no age restrictions. Hospice of the Valley cares for patients of all ages, from infancy to 100 years old or more.
There are also no diagnosis restrictions. "People think if you don't have cancer, you don't qualify for hospice." That's not true, said Argiro.
Hospice of the Valley sees patients with all kinds of terminal illnesses, including heart disease, lung disease, ALS, Parkinson's, Alzheimer's, kidney failure, AIDS, cancer and others.
Hospice also cares for patients in just about any homelike setting. Some people think that if you are in a nursing home, you don't qualify for hospice.
"Not so," said Argiro. Hospice will follow you to a nursing home, to an assisted living facility, to a caregiver's home (whether friend or relative), and, of course, to the patient's own home.
Hospice addresses a patient's physical, emotional and spiritual needs. And at Hospice of the Valley, these terms are broadly defined.
Hospice provides durable medical equipment like beds and commodes. It provides medication and pain management therapies related to the terminal illness. It provides nursing services, social work services, spiritual services of a chaplain and grief counseling by bereavement specialists.
But there are other far less-traditional services that hospice will provide on a case-by-case basis. There is no cookie cutter treatment of patients, Argiro said.
For instance, although massage therapy is not reimbursable through Medicare or Medicaid, Hospice of the Valley provides it.
"Anything the patient or family needs," Argiro said. She recalled one patient whose family wanted him to be able to eat turkey at Thanksgiving. The patient was having some swallowing difficulties, so hospice paid for a couple of physical therapy treatments. "Anything to enhance the quality of life."
There was another patient who couldn't get outside because he couldn't climb the stairs and had no money to pay for construction of a handicapped access ramp.
The hospice social worker inquired if it could be paid for by Hospice of the Valley, and "we paid for it," Argiro said, smiling.
"We paid for a ramp at this gentleman's home so that he could get outside because that's all he wanted was to enjoy the sunshine."
Officials said that Hospice of the Valley is team oriented. The patient and the patient's family are considered the unit of care along with the physician.
And hospice puts its interdisciplinary team to work in whatever way is needed -- social worker, nurse, chaplain, counselor, volunteers. The team can be provided all at once, or more gradually by adding team members as needs arise.
Not for everyone
Not all patients are appropriate for hospice care, Argiro said. Some families just aren't ready emotionally. Or in some cases, the family members are very realistic, "but their loved one just doesn't get it; they keep having hope that a miracle is going to happen."
Some people are just not appropriate for hospice, even though they are dying, because they don't want the whole scope of what hospice can provide.
Here is where another misconception prevails about hospice, said Ellen Pence. Many people believe that a patient needs to wait to the very end to be referred. But, said Pence, a bit frustrated, "there is so much more that we can do if we get the patient in early in their disease. It's very hard for us the week they are dying."
Pence added that, "the perception is that if you come to hospice, that means you are giving up, and really it's not. Actually it allows us to provide a greater quality of life for the patient. There is so much more patients can do when their pain is under control. The perception is that when there is nothing more to do, then come to hospice.
"That's not true," she said.
Pence talks to other hospice organizations around the country. They all seem to be experiencing the same thing, she observed. The average length of stay is drastically dropping, she said.
"We're getting more referrals, but they are living only a week or two because they come in so late [in their illness]."
At Hospice of the Valley in 2001, nearly 45 percent of patients died within two weeks of admittance. Pence thinks besides the public's perception of hospice as a place of last resort, physicians are often reluctant to talk to the patient and the patient is reluctant to bring it up.
And, then, said Pence, there is so much technology out there, people often think, "I'll go for this one more treatment."
Hospice of the Valley receives nearly 80 percent of its money through reimbursement from Medicare and Medicaid.
"But just because we bill Medicare and Medicaid, does not mean we are not free," said Liz McGarry, hospice director of development. "We take anyone regardless of ability to pay."
The cost of unreimbursed care is underwritten through the support of foundations, community organizations and individuals.
That's why the local community is so critical to hospice, McGarry said. "We wouldn't be where we are if it hadn't been for the kindness and the support of the community."