A Nice Place to Die
The modern hospice movement was born in England as an idea that you should have someone close by as you near death A a helping friend, a caregiver to sit with you in those final days to ease your fears and tend to your needs. The idea has been expanded over the years to combine these simple elements with basic medical care.
Today most advocates agree that a hospice should become involved during the last six months of a terminal patient's life. To care for an array of patients, most hospice programs utilize teams, each member caring for a different aspect of the patient's needs.
The structure of a team may differ from hospice to hospice. At VITAS the group consists of one physician, six nurses, six nursing assistants, a homemaker, a social worker, a chaplain, and a number of volunteers. While the physician and nurses address direct medical needs, the other team members provide support for patients and their families.
The nursing assistants, for example, might help bathe a patient if he or she is no longer able to do so independently. The social worker and chaplain assist the patient and family in coping with the emotional issues of dying. And the volunteers fill in the gaps, visiting patients in their homes, reading to them, or simply listening when there is one else to talk to.
In Dade and Broward counties, VITAS fields eighteen teams, who are responsible for 45 to 60 patients at a time, more than a thousand combined. Three teams form a special program known as Dade Outreach, which serves AIDS patients exclusively.
In addition to homecare, VITAS also leases from several local hospitals a portion or an entire floor to care for those patients too ill to remain at home. The hospital units are decorated to enliven an otherwise sterile environment. Wallpaper, curtains, and sofas in each room help to suggest the feel of home, not hospital. And the nurses who staff the hospice units don't wear white uniforms but rather regular clothes. Family members are afforded 24-hour visiting rights. Occasionally a journalist is permitted to venture inside.
Mary's eyes dart around the room, absorbing every detail. The floral-print wallpaper, the curtains on the window. She rubs her hands together nervously as she sits straight up in bed. A television blares high in the corner, a National Enquirer lies unread on the table next to her.
"My diagnosis is terminal and I'm not doing too well right now," she begins, slowly rocking. "I feel like I'm just hanging on."
It's been seven months since she entered VITAS's Dade County hospice program (formerly known as Hospice Care Inc.). And for the past four days she's been a patient here at North Shore Hospital, in a special wing leased by VITAS. Mary, a thirtysomething single mother, is dying from complications related to the AIDS virus. The immediate goal is to stabilize her condition and then send her home, where she'll be more comfortable.
But there isn't much time, and wishing for more is pointless. Instead she offers a simple prayer for herself. She has worked in hospitals and she's witnessed the way people die. "I've seen people take their last breath so easily," she says. She stops rocking and smiles. That's what she wants A to take her last breath easily. Not in pain or racked with fear or with tubes running from her body.
She'd like to be in her own bed, in her mother's apartment overlooking the ocean. "It can really make it nice," she offers. Pause. "Nicer, anyway." Pause. "Nicer A if you have to die."
Across the hall, Stanley, an octogenarian, is going on about everything and nothing. Just as he's about to slip into incoherent babbling, he snaps back with a salient thought. "The funny thing about being incapacitated," he offers, "is that it doesn't really bother you after awhile. I've never lived so good in all my life. It's fantastic here, and don't you think otherwise. All my life, nobody has done anything for me until now."
Just as quickly Stanley returns to his favorite topic of the past few days: World War II and the story of his lost army uniform. For fifteen minutes now, Diedre Lawe, regional vice president of VITAS, has been listening as bits and pieces of the story dribble out. "Get me a uniform, that's all I want," Stanley finally tells Lawe, his eyes pleading. Lawe turns to Anna Lincoln, the floor supervisor, and whispers, "Are you working on it?"
Lincoln nods as Lawe adds that she might be able to help. "I have a connection in Senator Graham's office," she says.
Outside Stanley's room, Lawe recounts how she was once able to get a number of war medals and citations replaced for a dying patient who was upset by the fact that he had lost them years earlier. Often as a person approaches death, small details from the past can haunt him. If those issues can be resolved, it can provide a sense of peace in the patient's final weeks.
A short drive from North Shore, in a modest home, Sally recalls the moment she was diagnosed with AIDS, and how a few days later came the nurse from VITAS. "He's never in too big a hurry to sit down and listen and answer my questions," she says. "It keeps you from getting depressed.
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