Hospice is not the end but a ‘new beginning' for some
Published: Sunday, February 24, 2013 at 8:10 p.m.
Last Modified: Sunday, February 24, 2013 at 8:10 p.m.
Gary Perry doesn't remember the day he came to Haven Hospice. It was sometime in December 2011, but he was having seizures and his body was riddled with pain from a rare form of genetic cancer that had already killed his daughter a few years before, just 18 days before her 21st birthday.
* Haven Hospice has five area care centers: in Gainesville, Lake City, Palatka, Chiefland and Orange Park. There are more than 6,000 Hospices in the U.S. and nearly 400 Hospice care centers. 90 percent of care is provided in homes and skilled nursing facilities.
* The average length of a patient's stay at Haven Hospice in Gainesville is 19 days.
* 32 percent of patients have cancer, 27 percent have dementia, 18 percent heart disease, 12 percent pulmonary disease, 10 percent other and 1 percent AIDS.
* Medicare, Medicaid and most private insurance plans cover Hospice care. Patients must qualify for the care by having a prognosis of six months of life or less, and their condition monitored every 90 days to continue receiving Hospice.
Perry's doctors had given up on him, he said. They sent him to Haven Hospice, a facility on peaceful grounds behind the Health Park off 39th Avenue in northwest Gainesville. Hospice, to many people, is viewed as a place to die, and Perry's mother was devastated.
But Perry told her, “Maybe it's not such a bad thing.”
And indeed, the day before Christmas Eve, Perry was ready to go home. His mother picked him up, and they went to dinner at Red Lobster, followed by Christmas shopping at The Oaks Mall.
“There's no stop sign on life at Haven,” Perry likes to say. “Hospice can be a new beginning.”
Perry is considered one of Haven's “graduates,” someone who gets well enough to leave the facility. According to Dr. Fernando Petry, Haven's chief medical officer, “Whenever I've had a patient graduate from Hospice, they come with a list of medications they are on, and interactions amongst those meds can sometimes be life-threatening; at most, they are life-altering, causing fatigue, nausea, dizziness,” Petry said. “When we stop, a lot of times, all those toxic side effects go away.”
Haven is often the alternative to an emergency room visit, and a place where patients can get back on their feet.
About 5-10 percent of patients at Hospice do actually graduate (roughly 80 percent die at care centers such as Haven), but many patients do get better, even if they are terminal, and this is owing to the holistic philosophy of care that Haven provides, Petry said.
“We are taking care of patients' spiritual, emotional and medical needs,” he said.
Patients' medications are carefully monitored — and often reduced (but pain medications are freely used) — their families are encouraged to stay at Haven; there is a fish pond and gardens, a chapel and spacious rooms with vaulted ceilings and fireplaces that resemble a lodge or your own living room.
“Hospice is truly about the person: how this person has come to this part of their life, and their journey through life with an illness,” Petry said. “It's really the culmination of truly patient-centered care.”
Gerald “JJ” Silcox, another Haven graduate, also came to Hospice after his doctors had given up on him, he said. He was in a congestive heart failure, with 30 pounds of fluid from his feet to his neck. At Haven, he rested, walked and had visitors every day. They made him one of his favorite meals: beef strips and rice, biscuits, lemon meringue pie and iced tea.
“I just thought, ‘Well, they sure know what they're doing,' ” Silcox said. “I just started getting better every day.”
While patient-centered care is now a movement in family medicine, Petry said, Hospice has been practicing it for years.
“There's a lot that we do in Hospice that other physicians would benefit from learning,” he said, adding, “Hospice is one of the few specialties in medicine where you can actually develop a good relationship with patients. A lot of times you hear that physicians are cold … in Hospice we are doing the opposite.”
Perry has noticed the difference in his doctors at Hospice. “Some doctors don't have a good bedside manner, but the ones here do,” he said. “I would suggest all doctors spend six months at Hospice before becoming doctors. If they want to be a doctor, they need to know this side of it.”
For Perry, “this side of it” means living with a disease that is incurable, even though he is now well enough to live at his home in Starke.
He has a pain pump with him at all times, which on the hour automatically shoots 5 milliliters of pain medication into his abdomen, and he can press a button if he needs more. A Hospice nurse visits him once a week, but otherwise, he spends his days fishing and shooting his guns, and fiddling with his latest hobby, building model helicopters.
“I smell the roses now,” he said. “I make sure I tell (my family) how much I love them every time I talk to them.”
Perry said he also feels guilty for passing on the disease, called Gardner Syndrome (also known as familial colorectal polyposis) to two of his three children, and his grandson — the son of his daughter who died from it.
Perry's parents tested negative for the genetic mutation that causes the disease, so it started with him.
Unlike most people with Gardner Syndrome, who have a lifespan of 35-40 years, Perry, who is now 48, found out that he had it when he was 40 years old. He had rectal bleeding, which was misdiagnosed as bronchitis and digestive disease before a specialist in Gainesville finally found polyps from one end of his colon to the other. Genetic testing revealed the rare condition, and three months later, his daughter developed a tumor in her neck.
She went quickly, and died at Haven. “She had enough consciousness to look me in the eye and tell me goodbye,” Perry said.
He tears up recalling his daughter, and the conversations they had, retracing her lifelong digestive difficulties to one insidious genetic mutation.
Perry is nowhere near immune to pain, but continues to appreciate what he has now. He wears a North Florida Bluegrass Association T-shirt and says he is learning to play the guitar. Sometimes he and his buddies spend two or three days at campgrounds playing music. He speaks softly, but his words are full of purpose: “This doesn't have to be the end.”
Contact Kristine Crane at 338-3119 or firstname.lastname@example.org.
Reader comments posted to this article may be published in our print edition. All rights reserved. This copyrighted material may not be re-published without permission. Links are encouraged.