HARTFORD, Conn. (AP) - Proposed changes to decades-old state public health regulations are pitting dozens of Connecticut hospice providers against a nationally-recognized facility in Branford for the terminally ill, which claims the suggested revisions could be financially devastating and compromise patient care.
Natalie "Nikki" O'Neill, the state's former first lady, has joined the emotional debate by urging support for Connecticut Hospice, which operates the palliative hospital in Branford as well as a visiting hospice program that cared for her late husband, former Gov. William O'Neill. He died at home in 2007 after battling chronic emphysema for years.
"In Connecticut, we have the highest hospice standards in the nation," said O'Neill, who recently wrote an opinion column in The Hartford Courant that Connecticut Hospice sent to supporters. "Why spoil what we have?"
But proponents of the new Department of Public Health regulations, the subject of an April 4 public hearing before the General Assembly's Regulations Review Committee, argue the changes are long overdue and will ultimately allow more hospices to provide end-of-life care in a residential facility, such as the one in Branford.
"It creates competition. It allows other hospices to do what Connecticut Hospice has been doing solely for 30 years," said Cynthia Roy-Squitieri, executive director of Regional Hospice of Western Connecticut, which serves 600 to 800 hospice patients a year. Roy-Squitieri said families cannot or do not always want to drive the hour and a half to visit their loved ones in Branford.
"Families in Connecticut should be allowed to have a choice," she said.
Besides the Branford facility, there are two residential programs in Stamford and Middletown. Hospice services are also provided at hospitals and nursing homes across the state.
The draft regulations, initiated during former Gov. M. Jodi Rell's administration, apply only to inpatient hospice facilities that families typically turn to when care at home, in a nursing home or a hospital is not a viable option. The rules would change various requirements for medical staffing levels, onsite pharmacy services, spiritual counseling, arts programming, as well as required qualifications of administrators and medical staff, and building requirements such as ceiling height and patient room size.
Roy-Squitieri said 29 of the state's 30 hospices, which often supply the hospice care at hospitals and nursing homes, support the new regulations.
DPH spokesman William Gerrish said the proposed changes reflect requirements by the federal Medicare program and "how hospice care is delivered in the modern era."
"Ultimately our goal is to improve quality and access to hospice care," he said.
Sen. Andrew Roraback, R-Goshen, co-chairman of the regulations committee, said many people on both sides of the issue have contacted him about the new regulations. He said he hopes the Public Health Department will find a compromise.
Dr. Joseph Andrews, medical director at Connecticut Hospice, said his organization believes the proposed regulations would essentially revoke the Branford facility's unique designation as a palliative care hospital, which allows it to receive higher rates under Medicare, Medicaid and private insurance. If Connecticut Hospice loses its hospital designation, Andrews said "it's kind of tough to see us staying the way we were."
Roy-Squitieri said the new regulations would allow Connecticut Hospice to seek a waiver and continue to operate as they do now.
About 20 percent of the time, when people approach the end of life, Andrews said they can become agitated or frightened. They might pull out catheters or rip off their clothing, or need help coping with major pain. Andrews said the visiting nurse associations that want to provide inpatient hospice services are "not realistic about the seriousness" of what's involved in treating some patients in their final throes of illness.
"They're going to get outmaneuvered by disease and it happens very quickly," he said, predicting many patients will end up in emergency rooms.
At the 52-bed hospice facility in Branford, which has sweeping views of Long Island Sound, there is one nurse and one nurse's aide for every six patients. During the day, there are typically two to four doctors on staff. There are also social workers, a full-time pharmacist and emergency admissions taken around-the-clock, said Andrews.
He said the new regulations set a bar far below what is provided by Connecticut Hospice, the first hospice program in the U.S. But other hospice groups point out that they are based on best practices and standards set by Medicare that affect more than 5,000 hospice programs across the U.S.
Dr. Steven Wolfson, a cardiologist from Guilford, brought his wife Susan to Branford six years ago when she was dying from ovarian cancer. She had an intestinal obstruction, a broken arm from a fall, a nasal gastric tube and was in terrible pain. Within two hours after her arrival, Wolfson said his wife was pain-free. During her final five weeks, she received physical therapy and was able to walk, sit outside in the sun and attend parties for friends and family.
Wolfson said he believes the new residential hospices, under the new regulations, won't be able to provide the same level of care.
"Sure, we should have other facilities," he said. "But what they're proposing, the staffing levels they are accepting is really - I don't want to be unkind - it's hospice-lite."