A revolution gently brings dignified care to life's end
By HOWARD TROXLER
Published April 22, 2004
When I was a kid, this is how people died. They went to the hospital and you didn't see them anymore. Doctors kept sticking tubes in them until the bitter end. It was rare to acknowledge out loud what was going to happen.
So it was interesting to learn that almost half the people who passed away in Hillsborough County last year (48.8 percent, to be exact) were patients of LifePath Hospice and Palliative Care. In Pinellas County, the figure for Hospice of the Florida Suncoast was almost identical, 48.5 percent.
It shows we've come a long way in how we approach our deaths. Hospice - providing care and comfort for the final stages of life - has only really been a part of mainstream American culture since the early 1980s, when it was recognized for Medicare coverage.
"That's when you really started to hear the word "hospice' in the United States," Kathy Fernandez told me. She is president and CEO of LifePath Hospice, which changed its name from Hospice of Hillsborough in 1997.
Florida is one of the best states for the availability of hospice care, Fernandez said. LifePath Hospice and Hospice of the Florida Suncoast are the two largest, stand-alone hospices in the state.
On any given day, LifePath is treating about 1,700 patients. Last year it had 6,000 patients in all. To qualify, you must be diagnosed with a "life-limiting" illness (life expectancy of a year or less).
Medicare and Medicaid provide much of the reimbursement of LifePath's costs, but not all. Last year, the hospice gave away $4.1-million in care. No one is turned away; the hospice negotiates fees on a sliding scale.
Patients either are referred to hospice by their doctors, or they or their families can call. The patient is assessed and assigned a team that might include a counselor, social worker, health aide, physician or volunteer.
LifePath has a staff of 850, and another 1,100 volunteers. The volunteers fill all kinds of roles for patients, from just visiting and keeping company right down to washing their hair, walking the dog, sitting to give the family a break, playing music, helping with scrapbooks, whatever. It is the work of angels.
The average patient's tenure is less than 100 days. Patients undergo counseling. They talk about their lives. They can pursue ongoing medical treatment. The overwhelming majority end up dying at home, where they want to be, with whomever they want to be there - family, pets, children.
LifePath also maintains an eight-room "hospice house" in Sun City Center, for patients who, for whatever reasons, can't stay at home but don't need to be in hospitals. It is a homelike atmosphere, with a common kitchen for cooking, and a family room with big-screen TV - this year, the families staying there held a Super Bowl party. LifePath is raising money for two new, 24-bed homes.
LifePath Hospice was started in 1983 by five co-founders. In its first year, it saw five patients. Now the hospice is headquartered in a 27,000-square-foot building on Azeele Street in Tampa. The hospice has its own clinic and medical staff and pharmacy, filling 500 to 700 prescriptions a day.
Every year, LifePath holds a youth camp for children in patients' families, where young people can work out and share their feelings. (There's a padded "anger room" complete with punching bag at LifePath headquarters.) And LifePath's relationship with families lasts for up to a year beyond the patient's death, including counseling and memorial services.
On a lobby wall at LifePath Hospice there is a "Tree of Life," where families of patients have placed engraved "leaves" with a tribute to loved ones. Most say simply, "In Loving Memory," but a few go a little further.
"A Southern Gentleman from Connecticut," one family wrote. "A gentleman, a scholar, beloved husband & dad," declared another. One chose Led Zeppelin lyrics. My favorite, though, was also the most succinct parting message: "Good Night. Sleep Tight."
If you would like to volunteer, or are interested in hospice services, here are area contact numbers: LifePath Hospice (Hillsborough), (813) 877-2200; Hospice of the Florida Suncoast (Pinellas) (727) 586-4432; Hospice of Pasco, (727) 845-5904; Hernando-Pasco Hospice, (800) 486-8784; Hospice of Citrus County, (352) 527-2020.
