Living Till The Last
By Jennifer LaRue
(c) Connecticut Explored Inc. Spring 2007
Sometimes a story that appears straightforward proves to be elusive.
For this issue on Connecticut’s health and medical history, it seemed imperative to include an article about the founding of the hospice movement in the United States, which happened right here in Connecticut, just over 30 years ago. Hospice is an approach to care for people with terminal illnesses that addresses not only their physical needs but their psychological, emotional, and spiritual concerns, too. Hospice allows patients to strongly influence decisions regarding their own care and gives them access not just to doctors and nurses but to clergy, social workers, and other professionals who can help guide them through their final days. The movement aims to keep patients as comfortable as possible and to allow people to live their last days fully and with dignity. And hospice focuses on both the patient’s needs and those of his or her loved ones, even after the patient’s death.
The editorial team thought an interview with Florence Wald, the former dean of the Yale School of Nursing and the individual most widely credited with having got the hospice ball rolling in the United States, would make an interesting story. As a professional freelance writer and reporter, I’m trained to ferret our facts and shape them into accurate, riveting narratives. This would be just another reporting job, I figured. My first call was to Siobhan Thompson, the public relations person at the Yale School of Nursing, for the contact information for Wald. Then came the sad news: Dean Wald is quite ill, unable to participate in an interview. In the course of learning that fact, though, I uncovered others that made the story still more compelling.
Turns out the telling of this hospice-founding story is fraught with those perils peculiar to tales that have unfolded during history’s blind spots, those periods that are recent enough for living people to have their own, sometimes conflicting accounts but distant enough for first-hand memories to be slipping away. And as with any good tale, this one has its elements with mystery: who in fact deserves the lion’s share of the credit for bringing hospice care to America? The loosely organized but passionate band of nurses, doctors, social workers, clergy, and others concerned with the value of human life who first wrapped their hands around the idea and started providing in-home hospice care in 1974? Or those who subsequently took up the cause and turned hospice into a viable, if not financially profitable, institution a few years later? As Thompson put it, “Sometimes the picture is very crisp and clear about who the founders were. Other times, well, there were no computers, no meeting minutes.” There are several variations on the story, and sorting them out will require time and perspective.
But this is a start, and it’s an important story to tell. So below is a brief synopsis of the story as we know it and interviews with two key figures in the history of Connecticut’s hospice movement. Connecticut Explored is committed to continue our quest to tell this story. We welcome readers’ help: any information you can share about your experience with Connecticut’s hospice in its early days would be very much appreciated. Please e-mail us at firstname.lastname@example.org or write to us at P.O. Box 271561, West Hartford, CT 06127-1561.
The Origins of Hospice
Hospice care has existed in Europe in various forms for centuries. The term “hospice” shares Latin roots with words “hospital” and “hospitality.” The first hospices were built by religious societies to host ailing travelers.
But the first modern use of “hospice” to describe a particular form of well-rounded care for those nearing the end of their lives came in 1967, when Dr. Cicely Saunders opened a hospice, St. Christopher’s, just outside of London. Saunders (later to be named Dame Saunders for her contributions) established her hospice not only to give care but to conduct research on the comprehensive treatment of patients in the end of life and to teach others the principles and practicalities of hospice care.
Saunders’s hospice concept coincided with two other key developments. First, medical advances had by the late 1960s succeeded in extending the lives of many patients with terminal illness. Yet medicine could in many cases offer no real hope of recovery, and it offered little in the way of what’s now known as “palliative care”—keeping patients comfortable and allowing them to live full lives with the greatest possible degree of dignity.
Up to this point, patients with terminal illnesses were relegated to a lonely and miserable existence. They languished in hospital beds, usually suffering excruciating pain, with no formal access to spiritual counseling or to activities to take their minds off their lot or add quality to their final days. No one in the medical establishment asked whether those extended lives were worth living—or resolved to make them so.
In 1969 Dr. Elisabeth Kubler-Ross, an Illinois-based psychiatrist, published her landmark, and best-selling, book On Death and Dying. The book, based on interviews Kubler-Ross conducted with more than 500 terminally ill patients, gave a mortality-averse America clear and unsettling insight into what really happens when people die: what dying people think, and what dying people need.
Florence Wald invited Cicely Saunders, who had been studying and building her expertise in hospice care in England, to lecture at Yale in 1964 as a visiting faculty member. Wald, deeply impressed by Sanders’s approach, resigned her post as dean in 1968 to pursue the prospect of establishing hospice care on this side of the Atlantic. She traveled to London to learn all she could about St. Christopher’s, determining which aspects of its operations might translate and which, given the differences between Great Britain’s public health care system and the USA’s largely private one, bolstered by Medicare, would need adjusting.
Hospice in New Haven
Back in New Haven, Wald brought together a core group of like-minded people including Rev. Edward Dobihal and Dr. Morris Wessel, who began meeting in a church basement on Whitney Avenue. Bucking a cure-oriented medical establishment, Wald’s volunteer hospice workers in 1974 made their first in-home hospice visit, thus confirming the notion that hospice is an approach to compassionate care, not a building or institution in which such care is offered. In fact, Hospice, Inc., as the organization came to be named, pointedly chose not to be tied to any existing medical facility but to exist as its own independent entity. The National Cancer Institute in 1974 awarded the hospice a three-year, $800,000 grant to develop a national demonstration program for home care of terminally ill patients and their families.
Hospice workers concentrated on carefully titrating pain medication so patients were as comfortable without being dulled by overmedication. They provided spiritual comfort and activities to enrich patients’ days. And they provided help and guidance for families dealing with their loved one’s illnesses and, eventually, with their bereavement. They were the first in the United States to formally offer hospice care; today there are more than 4,000 Medicare-approved hospices across the nation. The National Hospice and Palliative Care Organization reported last November that about 1/3 of all deaths in the United States in 2005 occurred among patients in hospice care; 1.2 million people availed themselves of such care during that time.
A Parting of the Ways
Hospice, Inc. benefited greatly from the attentions of Gov. Ella Grasso, whose ongoing battle with cancer eventually led to her death in 1981. Grasso helped secure funding for the organization and, in 1977, allocated $1.5 million in state grant money to help build the first hospice facility; the National Cancer Institute gave a second grant that was also used for this purpose.
In 1980 the hospice opened that new building, on a former farm in Branford. Designed by the architect Lo-Yi Chan, the 44-bed building featured amenities aimed at accommodating terminally ill residents; for instance, all patients’ rooms were on the first floor, allowing them immediate access to the out-of-doors. The building was the first free-standing hospice facility in the nation. In the early 1980s Congress passed legislation allowing hospice services to be covered by Medicare, making hospice a viable option for most Americans.
The story was straightforward up to this point, and then things began to unravel. Accounts vary as to how the hospice operation came, in June 2001, to be moved to the former Echlin Inc. office building, itself built on the site of the former Double Beach Club (for its sliver of sand connecting the shore to an island that formed a two-sided beach at low tide), overlooking Long Island Sound in Branford. Nor was it clear how the new facility’s board and executive director Rosemary Johnson-Hurzeler and the New Haven cohort came to part ways.
In her 1992 book The Hospice Movement: Easing Death’s Pains (Twayne Publishers), Cathy Siebold notes that the ways-parting resulted from an insurmountable schism between the movement’s idealistic founders — such as Wald — and the pragmatic administrators who sought to further the movement by concentrating on securing funding and working the political system to hospice’s advantage.
However it happened, Johnson-Hurzeler has remained at the helm of Connecticut Hospice, Inc., a 45-to-52-bed facility with oversight of another 450 or so patients receiving in-home treatment throughout the state; the institution serves some 4,000 people a year.
In the twilight of her career, Florence Wald concentrated on bringing hospice care to Connecticut prisons. She was inducted into the National Women’s Hall of Fame in 1968 and is also so honored by the Connecticut Women’s Hall of Fame. Connecticut Hospice recently was awarded $1 million by the State of Connecticut “to retire their extensive debt and at the same time give them breathing room to continue to provide the very best hospice services in the United States,” as Gov. Jodi Rell is quoted in a press release announcing Rell’s request for the funds.
The following interviews with Rev. Edward Dobihal and Rosemary Johnson-Hurzeler provide their perspectives on hospice’s development.
The Reverend Edward Dobihal was, as a member of the Yale Study Group pulled together by Florence Wald to investigate various aspects of the treatment of terminally ill patients, one of the first Americans to think seriously about hospice. His wife, Shirley, was one of the five original hospice nurses. I interviewed Rev. Dobihal by phone in early December 2006; here are some excerpts from that conversation.
Dobihal came to Yale-New Haven Hospital in 1964 to become the faculty’s first trained chaplain. The Yale Study Group, he says, “started because some of us here were concerned about how people were dying. I had come out of the mental health field and had dealt with many people who were dealing with loss.” Dobihal observed that “at Yale-New Haven Hospital, we didn’t do [that]very well.”
While impressed by the pioneering hospice work of Cicely Saunders, Dobihal and others were skeptical about translating her approach, which worked so well in Great Britain, to the United States. “It wouldn’t work at Yale-New Haven,” he says, “where we’d have to compete for beds” with other units of the hospital. “Nobody’s going to give you four to six beds. So we thought we’d have to go outside the system.”
According to Dobihal, though, implementing a hospice approach was impeded by the varying attitudes toward pain and pain medication that prevailed at the time. “In the hospital, we were very leery of giving terminally ill patients morphine. We practiced ‘defensive medicine.’ We didn’t know how to treat pain.”
“I always hated to hear this: I’d be going to see a patient who was clearly terminally ill. The doctor would be leaving, and he’d say to me ‘I can’t do anything more for her; now it’s your turn.’ We learned from Saunders and Kubler-Ross that there are a lot of things you can do.”
“Cancer pain can be controlled, but it requires titration [of medicines], letting the patient tell you when the pain has lessened. When they start getting constipated, you adjust [the dosage.]Saunders found that patients at high dosage of morphine, after a while, realize their pain is under control.”
“Of course, they are many kinds of pain. In the U.S., financial pain can lead to social pain, then to psychological pain. All of these are addressed in hospice’s interdisciplinary approach.”
Dobihal experienced first-hand the split between the founders of Hospice, Inc. and those who operate today’s Connecticut Hospice. “In 1973 we called a physician from England, Dr. Sylvia Lack. Cicely Saunders had been here showing a film, and we saw Sylvia on film. She came here [to serve as Hospice, Inc.’s first medical director]. Rosemary [Johnson-Hurzeler, president and CEO of current Connecticut Hospice] got rid of Sylvia.”
When time came to consider expanding to accommodate more patients, Dobihal sided with the group that believed the original building could be adapted and upgraded. Another faction, though, wanted to move into the office building that is now home to Connecticut Hospice, Inc. Dobihal was displeased to note that the move would in fact add very few beds to the operation. “I questioned the morality of spending $25 million to do that,” he says. After some legal wrangling, he says, “I was told by their attorney that if I ever returned to hospice I’d be arrested for trespassing.”
In fact, Dobihal and others felt that providing home care was more important than building a facility for hospice care. He recalls an early patient named Hattie: “She was dirty, not eating. She was expected to live two weeks. Hospice workers went in and cleaned. Hattie fussed, but she was happy at having the help. Her neighbors were able to be instructed as to how to help. We had three birthdays with Hattie.”
Dobihal, now 80, has remained active in end-of-life care. And despite divisive politics, he says “It’s gratifying to know that it’s not just hospice in Connecticut but the movement of hospice across the nation. God put me in the right place at the right time.”
Rosemary Johnson-Hurzeler and Danny Cosgrove
Rosemary Johnson-Hurzeler has served as president and CEO of Connecticut Hospice, Inc. since 1974. A nurse who was involved in the early planning of Connecticut’s hospice care, she recalls “sitting around the kitchen table, smoking cigarettes, coming up with a plan of care.” I interviewed her on Thursday, November 30. Here’s some of what she had to say:
Hospice’s being described as “a better way for folks to die’” has led to people’s apprehensive perception that “if you got very sick you do hospice, and then you probably die.” That perception doesn’t acknowledge hospice’s focus on “energy and beauty, seeing every person as having mystery, beauty, and strength.” Johnson-Hurzeler emphasizes that hospice “invites life to come in. We take away pain and symptoms; if necessary we’ll be there 24 hours to do all the things the body needs.”
Johnson-Hurzeler was very involved in finding ways to fund hospice’s efforts. Those early grants from the National Cancer Institute, she says, only went so far: for instance, though they provided money to buy “black doctor’s bags” to be taken to homes where patients required care, “when the grant was over, they wanted the bags back.” She credits John D. Thompson of the Yale Department of Epidemiology and Public Health with helping establish a framework allowing for insurance coverage of hospice costs. His establishment of what are known as Diagnosis Related Groups, or DRG’s detailing how a hospital gets paid for services opened the door to coverage for hospice care through Medicare and, she says, “allowed us to go out and do home care.” (Thompson was also father of P.R. person Siobhan Thompson.)
Johnson-Hurzeler recognized that hospice is not a hospital, not home care, not a nursing home. It’s all of those things and more.” Johnson-Hurzeler says Thompson was instrumental in bringing Cicely Saunders to Yale where she spoke “about a better way of caring for the dying instead of leaving them down the lonely back hall where they were out of sight, maybe in pain, or not, but certainly suffering.”
Johnson-Hurzeler also credits long-time Branford resident and hospice board member Danny Cosgrove, a former prizefighter, with helping to secure the land and financial resources for building the first hospice facility. “He had access and power,” she says. “He knew John Bailey [chairman of Connecticut’s Democratic Party for 30 years and a major power broker in the state]and Ella Grasso [Connecticut governor from 1975 to 1980]. Cosgrove, who was present during my interview with Johnson-Hurzeler, recalled a patient whose bed was turned to face the window in the hospice building. Cosgrove reports that the patients said, “I’m in heaven already.”
Jennifer LaRue is editor of Connecticut Explored, a freelance writer, and author of a children’s book to be published by Random House in 2009.
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