Hospice

After Ryan Fiegel fell into a coma in the wake of a brain tumor in February, his parents made the tough decision to take him off his ventilator. But Ryan, 26, didn't die; he didn't wake up either. The Fiegels decided they wanted Ryan's last days to be at Grand Junction's community hospice, the Hospice and Palliative Care Center of Western Colorado. He had received excellent care at St. Mary's Hospital and Medical Center, but it was uncomfortable to be in the scurry and stress surrounding a place where staff was trained to do everything to fight death.

"I'm not sick; I'm only dying," a friend told Dr. William Lamers Jr. The man had inoperable cancer and wanted to go home to die, but his doctor wouldn't let him out of the hospital. It was the early 1970s, when most people with incurable illnesses died in a hospital, in a lonely room, attended by doctors and nurses with no specialized knowledge of the dying patient's emotional and physical needs. There was no system for caring for the dying at home. The experience opened Lamers' eyes to a major failing of the healthcare system.

State and local officials gathered Wednesday morning at Metropolitan State Hospital in Norwalk to dedicate a 66-year-old building for use as a 35-bed AIDS hospice. The former hospital administration building, a brick-and-plaster structure built in 1923, will be remodeled and expanded at a cost of $1.5 million to $2 million before opening next summer, officials said.

When people ask about my father's death, I always respond the same way: "Except for the fact that he died, everything was perfect. " Perhaps because I am an oncology nurse, they expect a different answer. But after a six-year battle with colon cancer, he died on his own terms — perfect for a less-than-perfect situation. He was home on hospice. He was comfortable. His wife of 53 years, his six children and several grandchildren surrounded his bed. We are stoic folks, but as Dad drew his last breath, one sister, perhaps tapping into our Irish heritage, started a keening wail.

Juan Robles thinks there are two men within him. The first one, easily enraged, is racked by violent impulses, swayed by his companions. That's how, eight years ago, he landed in the penitentiary for armed robbery. The second Robles bleeds with empathy. He has a gift for easing others' pain; he responds intensely to the influence of peers. That's why he volunteers inside the prison hospice--for the shattering, redemptive work of helping ailing inmates as they die.

The largest AIDS hospice in Los Angeles has received its permanent certificate of occupancy and is running "smoothly" after problems over fire and building codes were straightened out. Michael Weinstein, president of the AIDS Hospice Foundation, said the Chris Brownlie AIDS Hospice in Elysian Park has met requirements for a permit that allows it to operate as a dormitory.

When Pearl Jemison-Smith was a nurse, she never understood why doctors would order the resuscitation of someone dying from a terminal illness. "We would never allow someone who was dying to die," she said, remembering back to the days when she was a nurse caring for those with cancer and other illnesses. "We would beat on their chest and defibrillate them. I felt like I was member of the Gestapo and that I was torturing them."

When the residents of Group One hospice return to their facility in Sherman Oaks on Sunday, it may seem as if Santa Claus came calling early. Instead of coming home to drab walls and worn bedding, the nine AIDS patients and one terminal cancer patient will find freshly painted quarters and a new supply of linens, comforters, bath towels and accessories.

Organizers of the county's first nonprofit hospice say it will probably be spring before the facility opens. The Hospice of Orange County was scheduled to open in Anaheim Hills this month, but Helen Monroe, the group's treasurer, now expects it to open by May. Monroe said the delay is due in part to efforts to corral a well-heeled benefactor to sponsor the facility. One benefactor, whom she would not name, is looking into adopting the project and taking care of its ongoing financial needs.

An official at Barlow Hospital, a respiratory facility in Elysian Park, angrily denied Friday the existence of plans to expand a 25-bed AIDS hospice that will open next month on the hospital's grounds. John R. Howard, Barlow's chief administrator, said that Michael Weinstein, the head of the Los Angeles AIDS Hospice Foundation, which is opening the 25-bed hospice in December, had no authority to make plans for an expansion funded by state revenue bonds.

Patients at the end of their lives often receive their final care from hospice workers. Contrary to what the haven't-really-though-about-it-crowd might suspect, not all such care involves administering drugs. Hospice therapists in Florida team up to use a combination of music and massage to treat dying patients such as Bernard Michels, 98. He, for one, sees the merits. "It brings back memories of when I was a younger guy," he says in a South Florida Sun Sentinel story . The music-massage approach delivers more than a passing feel-good emotion.

Study results released Tuesday by the Journal of the American Medical Assn. report that for-profit hospice services may be selecting patients who are less expensive to treat -- leaving the pricier patients to nonprofit agencies. The researchers, led by Dr. Melissa W. Wachterman of Beth Israel Deaconess Medical Center in Boston, suggested that Medicare's hospice reimbursement system -- currently a flat-rate per diem, regardless of the needs of the patient ($142.91 in 2010) -- may create incentives for profit-seeking providers to avoid taking on the sickest cases.

About this time last year, voters and politicians were consumed by the rumor — fanned by healthcare overhaul opponents — that the legislation would establish "death panels" of government bureaucrats who could "pull the plug on Grandma" if she needed costly care. The outcry led legislators to scrap a provision of the House bill that would have paid for voluntary consultations between physicians and Medicare beneficiaries about end-of-life care: living wills, hospice benefits and the like.

In 1995, Oregon passed a bill legalizing physician-assisted suicide. However, a new study shows a major stakeholder in terminal illness -- hospices -- rarely participate in physician-assisted suicide. The law permits a doctor to prescribe a fatal dose of medication to a terminally ill patient who requests it as long as certain criteria are met. The survey of 55 hospice programs in Oregon found that 25% did not participate in the law at all and 27% had only limited participation, meaning that any questions to the hospice staff about the law were referred to an attending physician and that caregivers were not actively engaged with a patient who was intentionally ending his or her life.

After Ryan Fiegel fell into a coma in the wake of a brain tumor in February, his parents made the tough decision to take him off his ventilator. But Ryan, 26, didn't die; he didn't wake up either. The Fiegels decided they wanted Ryan's last days to be at Grand Junction's community hospice, the Hospice and Palliative Care Center of Western Colorado. He had received excellent care at St. Mary's Hospital and Medical Center, but it was uncomfortable to be in the scurry and stress surrounding a place where staff was trained to do everything to fight death.

Let me tell you a story about my dad and Johnny Cash. Many American music lovers of a certain age could spin out such a connection; Cash is primary among artists who represent the tough psyche of the post-war patriarchal male, his music exposing the connections between empowerment and violence, pride and repression, that defined an ideal still romanticized long after it became dated. Frank Sinatra did it, tux tie loosened, with a Scotch in his hand. Muddy Waters shouted about it in a sharkskin suit before the folkies persuaded him to put on overalls.

Alex Hensel's daughter was going away to college, so he and his wife thought they would lease out their three-bedroom home on Ogden Drive in Hollywood and move next door, into a smaller house that happened to be for rent. Hensel placed a newspaper ad and received a call from Ron Wolff, executive director of an AIDS hospice program. Wolff was wringing his hands.

The San Fernando Valley's only AIDS hospice, Pioneer House, reopened Saturday after a six-month closure to get its financial and legal affairs in order. "The treating of AIDS has strained our resources, both human and financial," said John Maceri, executive director of Homestead Hospice & Shelter, a nonprofit institution that founded the five-bed Pioneer House in 1988. He spoke to a crowd of about 30 gathered in the back yard of the hospice for a rededication ceremony.

For more information National Hospice & Palliative Care Organization: resources for finding a hospice provider and information on hospice philosophy. www.nhpco.org (800) 658-8898 Hospice Partners of Southern California: a hospice care group serving Southern California. www.hospicepartnerssc.org (310) 264-8413 Five Wishes: A document to help you express how you wish to be treated if you're seriously ill and unable to speak for yourself.

Over the last 25 years, the number of Americans turning to hospice for end-of-life care has climbed dramatically -- from 25,000 in 1982 to 1.45 million in 2008, as more and more people choose to spend their final days in the comfort of home or a patient facility with a home-like environment rather than in a hospital pursuing aggressive treatments. During the last decade, Medicare reimbursements for hospice have also risen, allowing more hospices to open without relying on fundraising for survival, says Christy Whitney, chief executive of Hospice and Palliative Care of Western Colorado in Grand Junction.