European Stars And Stripes (Newspaper) - February 28, 1989, Darmstadt, Hesse                                J f cd \v."","ba i. To psf -.stil1 i it a r-s1"1  a i i a the Connecticut hospice in Brandford Conn., was the first in the United states before her death Laura Dahmen in wheelchair received care from Leah and remains a Leader in care for the terminally ill. George right a nurse at Forbes hospice in Pittsburgh a. By George Esper associated press n a fit of depression when her third bout with cancer had sounded a death Knell Julia Gebersky inquired through others whether her son Robert h and a gun and could shoot. Incontinent her body scarred by bedsores she had become a prisoner of her own helplessness. If euthanasia were Legal Bob Gery said he would have helped his Mother kill herself. But there was another Way out for Julia Gebersky. Like nearly 200,000 patients a year she awaited her death in hospice a Way station for the terminally ill that benignly treats them not for prolongation of life but to ease their dying and Lessen their pain. Gery s Mother died without much discomfort in the gentle hands of the Connecticut hospice in Branford just As his father had died of cancer nearly 13 years ago under the same hospice care. In that Span the number of hospice care programs in the United states has grown from fewer than 100 to nearly 1,700, according to a 1988 Survey by the National hospice organization in Arlington va., which provides technical services for its 900 members. While care is much the same and about 90 percent of it is provided in the Home the programs Are operated by a variety of organizations. For example 41.8 percent of the programs Are independently run 26.6 percent Are run by hospitals 22.4 percent by agencies that provide care in the Home and 9.2 percent Are run by a coalition of organizations such As nursing Homes and hospitals working together. Hospice is not a place it s a program of care says Ira Bates vice president of the National hospice organization. We Are the Only health care provider that defines the unit of care As both the patient and the  hospice does this by sending in a team including volunteers and social workers to help the family with housework and personal problems to maintain the Vigil while they take a break and to help with funeral arrangements once the patient Dies. After that hospice workers keep in touch with the family for at least a year to Comfort them. Many hospice programs Are based in office buildings and lease Beds from hospitals and nursing Homes. If there is a crisis in the family then we can provide continuous Home care in the Home around the clock Bates says. If that s not enough then we can move the patient to an inpatient  the modern hospice system originated in England in 1967, when Cicely Saunders a British physician founded St. Christopher s hospice. What brought it about say hospice authorities was the leap in technical advances in Medicine since the mid-1950s and the increasingly common dilemma of terminally ill patients being kept alive sometimes against their wishes and the wishes of their families at High costs in suffering and financial sacrifice. Even some of those dealt the cruellest of hands in life aids victims who Are not Only dying but Are homeless find Refuge in some hospices like the Connecticut hospice the first and oldest in the United states and a Leader in care for the terminally ill in the past two decades. Connecticut hospice began caring for the dying in their Homes in March 1974 and opened a 44-bed hospice for inpatients in july 1980 in Branford. Two years ago it bought an adjoining Home and converted it into a cottage with five Beds for the dying who have no Home or no one to care for them. Bates says Connecticut hospice is unique in its much higher proportion of inpatient care to Home care. It serves As a teaching hospice As Well. The average hospice says Bates has three or four Beds a paid staff of eight and 50 volunteers dealing with about 110 patients a year. The discharge rate is around 10 percent those who decide to seek treatment or who go into remission. While hospice patients Are mostly elderly cancer victims As much As 90 percent the 80s have brought a new Challenge a younger generation afflicted with aids either cast aside by society or in self imposed exile to keep loved ones from seeing them at their worst. The latest data available from the National hospice organization show hospices served about 2,100 aids victims in 1986, among 154,700 patients in All. While later figures Are not available Bates estimates the number of aids victims cared for will reach 6 000 or 7,000. Among them Are men like Keith Jackson 27, and Eddie Muniz 36, who found accommodations in the Connecticut hospice cottage last year their gaunt bodies implanted with catheters their shoulders propped up by hospice volunteers and friends so they could walk their lips barely movable slurring their speech almost As if they d suffered a stroke and coughing coughing coughing. I got a Home but i Don t want to be near the girls because i be been sick Muniz an admitted drug dealer and user and the father of three daughters Ages 8, 10 and 12, told a visitor last november. I know i m gone. I Don t want to go " he paused.  Jackson a fashion Model who is Gay lived with his divorced Mother until she died two years ago. He said he would rather live in the cottage than move in with his father or siblings. This is my Home he said. Nurses the heart of hospice care and volunteers the soul give the men medication feed them do their laundry and take them out to dinner and to shop. Like Many of the terminally ill they dread above All dying alone in confusion and fear. The hospices quietly ease those apprehensions. For sundowners who fear the night and sleep by Day families Are often bedded Down by their besides in inpatient hospices like the Connecticut hospice which has its own building. Other hospices operate in a Wing or Ward of hospitals. One of the big complaints is that dying is so sterile says Pat Jones executive vice president of the hospice association of America a Washington lobby group that represents 1,300 hospices. People were isolated in a Hospital room maybe the family could t come in. I think it s related to the need to be in control of one s life. I Don t think it s an Accident that hospice started coming into being around the same time As Home birth. It s taking dying Back into the family into the  indeed says National hospice s Bates. Most people want to die at Home. Ninety eight percent will say i want to be at Home with my wife and family so we make that  All of health care Bates says is moving toward More choices the kind of choices made by Julia Gebersky and by Mark Marcucci a 57-year-old retired Steelworker from Bethel Park a. Like others with incurable cancer they decided they had had enough of hospitals and doctors and that there was Little else caretakers could do but keep them comfortable. Gebersky died As she wanted surrounded by people she loved her body free of the dreaded tubes. She had been cared for  apartment in neighbouring Hamden by a Connecticut hospice nurse who looked in on her twice a week an outside nurse and a privately hired live in aide who took care of her around the clock. Gebersky fought a cancer in the parotid gland near the ear through surgery and radiation for seven years. Her condition worsened last fall and at her age 76, she decided against further treatment with chemotherapy. Her apartment had been decorated for a last thanksgiving dinner with her family and there was a Christmas tree in Case there would be time for that but two Days before the Holiday she slipped into a coma and was moved to the Connecticut hospice at Branford where she died on thanksgiving Day. One of her last wishes was to give the artificial Christmas tree to the hospice and Bob Gery one of her sons did that. Gery s father Benjamin 64, died at Home of cancer on May 11,1976, four years before the inpatient hospice was built. After his father died Gery who shortened his name served on the Board of Connecticut hospice for five years helping raise funds for the non profit organization. A Volunteer brings Eddie Muniz some food. Muniz an aids patient is living at the Connecticut hospice. A Fred Valenti and Mary his wife of nearly 50 years were cared for at Merrimack Valley hospice in Andover mass., before their deaths. A Page 14 the stars and stripes Rpbert Gery sits at the bedside of his Mother Julia Gebersky in her apartment at Camden Conn. She was in me care of the Connecticut hospice before her death in november. You always know where the Good service is for this Type of care Gery says. The most important thing was that Connecticut hospice would respect her wish to die with dignity. That s basically where hospice distinguished itself from  Mark Marcucci called it quits after a four year struggle with Colon cancer. He had been in and out of hospitals had undergone a colostomy Catheter nation intravenous morphine to palliate the pain had shrunk from 215 pounds to 140 pounds had begun to hallucinate. When his wife of 26 years Pat could no longer care for him at Home he was admitted last summer to the Forbes hospice in Pittsburgh one of the divisions of the Forbes health system that includes hospitals and a gerontology Center. He stayed at the hospice five Days then came Home to die with his wife and two sons at his Side. Death came on aug. 9, As we kept him comfortable propped up and just sat there with him Pat says. It s not that they did t treat him Well at the hospice. I just think he wanted to be with  generally hospice care is for those who have been diagnosed by a physician As having six months or less to live. Their average stay in the program is 45 Days. In surroundings familiar to them Home care patients Are visited by a team of hospice workers including nurses homemakers social workers. Coincidentally says Bates any strategy that keeps people out of hospitals saves loads of  he estimates savings of 20 percent to 40 percent for taxpayers who foot the medicare Bill for patients 65 and Over and for health insurance companies Many of which now provide hospice benefits. Beyond that says Bates most hospices Are committed to care regardless of the patient s ability to pay. Since reimbursements rarely cover expenses most hospices rely on Grants and donations to meet their budgets. Ninety five percent of them Are non profit Bates says. Ninety percent of our patients die at Home says Patricia o Neil a Liaison nurse at the Merrimack Valley hospice in Andover mass. I think that s really important because in order for that to happen you need a lot of support and intensive  hospice patients Range from the very Young to the very old. At Merrimack Valley hospice Many Are in the program Only a few Days because people Are naturally reluctant to make the provision since it Means a real acknowledgement that you re finished with looking for a cure says o Neil. We can be very Low key she says but there has to be some understanding at least from someone in the family that the prognosis is  patients she says Are not necessarily afraid of death itself but of the process of dying. A hospice program can Comfort them about that. Tuesday february 28,1989 the stars and stripes Page 15