Mary Labyak was among a half dozen people who gathered for a cause more than 30 years ago.
Some had worked to advance civil rights and other political matters. But together, they agreed that the rights of dying people was one issue that could no longer be ignored.
Out of a four-bedroom house in Clearwater, they created Suncoast Hospice, one of the first hospice care organizations in the nation. Later to serve as the organization's CEO, Ms. Labyak proceeded to lead the hospice from its origin as a scrappy health care nonprofit to the vanguard of a new multibillion dollar industry.
After battling cancer for more than a year, Ms. Labyak died Saturday (Feb. 4, 2012) at her Clearwater home in the care of a Suncoast Hospice team, the same type of care that she had helped make possible for Americans dying of terminal illness. She was 63.
"She was someone who had a deep understanding and was so articulate of what the social mission of hospice was," said Scott Kistler, Suncoast Hospice's vice president for organizational advancement. "She had a profound impact on the way people experienced end-of-life in Pinellas County and across the nation."
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Taken for granted now as typical end-of-life care, hospices are a relatively new concept. According to the National Hospice and Palliative Care Organization, the name "hospice" was first applied in 1967 with the founding of the first modern hospice in London.
By 1975, the United States had a grand total of two hospices.
Two years later, Ms. Labyak, then a social worker, hatched the Suncoast Hospice with a handful of like-minded volunteers seeking to improve care for the dying.
"When they started Suncoast, it was very small, mainly volunteer based," said Martha Lenderman, who has been on the nonprofit board the past 16 years. "It was Mary who created what we have today, and 99 percent of it was her inspiration. She was a brilliant person."
Ms. Labyak had impeccable timing.
In 1978, the federal government endorsed hospice care as a viable and cheap way to provide more humane care for Americans dying of terminal illness. That verdict justified the spending of billions in federal support on the new form of care.
With the federal spigot wide open, Ms. Labyak was appointed president, executive director and CEO in 1983. Along with the rest of the industry, Suncoast Hospice grew at an extraordinary rate. By 1995, the hospice said it cared for 34 percent of people who died in Pinellas County.
The organization had outgrown its headquarters in Largo by 2002 and moved to a 22 acre-campus, complete with 21 buildings for counseling, meetings and training west of St. Petersburg-Clearwater Airport along Roosevelt Boulevard.
By then, the overall industry had grown to 2,454 hospices, financed by $5.9 billion in Medicare spending.
Among the approximate 7,000 people who died under Suncoast Hospice care in 2005, one in particular drew national attention. Terri Schiavo had collapsed from cardiac arrest in 1990 at age 26, possibly from her bout with bulimia. Schiavo entered Suncoast's Woodside Hospice House in Pinellas Park in 2000.
The ensuing battle that finally ended in 2005 between her family over whether she should be allowed to die put Ms. Labyak and her staff in the middle of one of the most divisive political controversies in recent years.
"Some people wrote letters and said they were not going to donate anymore because they were against" the removal of Schiavo's feeding tube, Ms. Labyak told the Times then. "Others sent contributions because they said they were proud of what we were doing."
As a leader, she knew well the concerns of those stricken with chronic illness and debilitating injuries, Lenderman said. And as a recent cancer patient, she came to know equally well what it was like to be on the other side of hospice care and the importance of the services for patients and their families.
"We always believed that our hospice didn't exist to be simply a provider of the hospice Medicare benefit," Ms. Labyak said in a speech last year at the National Hospice Foundation's annual gala. "We believed that we existed to change the world."
At that gala, Ms. Labyak received the foundation's Healthcare Architect Award, a prestigious honor whose previous recipients included Sen. Edward Kennedy. She spoke of the history of Suncoast Hospice and the organization's mission to provide dying patients care to which they were entitled.
Under her leadership, Suncoast Hospice spearheaded many specialty programs for specific patients. These included programs for children, AIDS patients, trauma and suicide survivors.
"There is just a fire and passion when people start that way instead of for financial reasons," said Betti Oldanie, who was appointed last week as the group's interim CEO. "I had never before experienced a leader who started a conversation with 'what does the patient and family need?'
"She understood the need to be both a sound business and a caring sanctuary."