The Beginning and Early Years of Hospice of the Valley
By the Rev. Q. Gerald Roseberry, DMin.
Hospice has not always been a familiar, publicly-approved mode of caring for terminally ill patients, and our experience in establishing Hospice of the Valley, the first hospice in Phoenix, the second in Arizona, and the 51st in the nation, was neither simple nor easy. From my perspective, the origin of Hospice of the Valley was pastoral, serendipitous, humble, controversial and blessed.
The origin of HOV was pastoral. Prior to moving to Phoenix in August of 1974, I was pastor of First Presbyterian Church of Mt. Pleasant, Iowa. Two women—both elementary school teachers—who were members of my congregation became ill with cancer. Maxine, a very articulate, attractive third-grade teacher, along with her husband Charles, had participated in a religious studies group with nine other couples. During her 18-month battle with cancer, Maxine made frequent entries in her journal and met with members of the study group to share her feelings and draw on the group’s strong emotional and spiritual support. The benefits of this kind of support for the patient and family were obvious. Neither couple had extended family to assist in the care of the afflicted wife, and each spouse was a busy professional. Members of the group took turns providing various services such as running errands, delivering an evening meal, sitting with the patient, reading to her, or merely being there as a strong, caring presence. Following Maxine’s emotionally stressful trips to University Hospital in Iowa City where very often she received bad news about her illness, the group came together to share in the sacrament of Holy Communion, to express love and support and to permit Maxine to vent her feelings as much as she wished to. She wrote in her journal, August 7, 1970, a list of “blessings” and first among them was “good friends and good conversation at the Roseberry’s last night.” Prior to the radical surgery to remove the malignant tumor in her mouth and jaw, she wrote, “I can face it now as I know God walks beside me, and I cannot be separated from him. Thanks to Jerry (my pastor) and the Religious Studies group (which became her support group)… The blessed “group” are coming here for Holy Communion tomorrow night. We could not endure this without them.” Maxine died on October 30, 1971, 18 months after her cancer was discovered.
Joann had a mastectomy several years earlier. After several years of remission, the cancer reappeared. Joann and Jim had heard of the strong support given Maxine, and knowing they were entering a time of trial and suffering, they came to First Presbyterian Church. They, too, received the same emotional and spiritual support Maxine had received.
Meanwhile, in August 1974, I accepted the call to serve as pastor of Camelback Presbyterian Church, which is now Palo Cristi Presbyterian Church, at Lincoln Drive and Palo Cristi in Paradise Valley. Although it was distressing for us to leave Joann and Jim while they were still in the throes of her illness, we knew she was in the strong, loving care of the support group. I continued to keep in touch with Joann and Jim and the support group until Joann died a month or so after we moved to Phoenix.
The origin of HOV was serendipitous. It was the experience with Maxine and Joann, their families and the support group and my acquaintance with the writings of Elisabeth Kubler-Ross, especially her book, On Death and Dying, which prepared me to recognize the universal appeal and benefits of a new way of caring for the dying. It was obvious that many terminally ill patients would benefit from the kind of strong, caring, faithful, accepting support that Maxine and Joann had received, but I had no clue as to how that support could be organized and delivered outside a religious congregation. It was just as obvious that many people are not affiliated with a religious group or congregation and would have no background of experience which would lead them to invite the assistance of such a faith-based support group. It was an experience of serendipity such as I had never had before nor have had since which gave me the answer I was searching for. In an effort to raise funds to support Camelback Presbyterian Church’s high school youth group’s work-camp trip to Petersburg, Alaska, parents of members of the group agreed to serve as subjects in the development and testing of antiperspirants at Dial Corporation. I was one of those parents. We were required to sit for an hour and a half, with small cotton pads under our arms, in a small room in which the temperature was raised to cause profuse sweating. We called it “The Sweat Box.” One formula of antiperspirant was applied to one armpit, and another formula was applied to the other, and small cotton pads were placed under each arm. At intervals, we were taken one at a time to have our cotton pads weighed on a very sensitive scale. It was a very boring hour and a half. Usually, I took a book to read or writing material in order to prepare my article for the church newsletter. One day, when I had forgotten to take either one with me, I walked into the “sweat box” dreading the boring, uncomfortable time perspiring for Dial when I noticed the stack of old magazines in the corner and realized that perhaps my sanity would be preserved after all. Rummaging through them, I found a month’s old issue of Readers Digest. Thinking I might be distracted by the jokes and perhaps a short story, I began thumbing through its pages when I discovered a one-column article about the work of Hospice Inc. of New Haven, Connecticut, which was begun by local residents and members of the Yale University faculty and staff. Hospice work with the terminally ill, although new to the U.S., was already a familiar and publicly supported alternative to hospitalization in England. As if a light snapped on in my brain, I knew I had found a way of helping all the Maxines, Charlies, Joanns and Jims, as well as those with no affiliation with any religion, through the most difficult journey of all, the journey through “the valley of the shadow of death.”
The article described the pioneering work of Dr. Cecily Saunders at St. Christopher’s Hospice near London, England, in the control of pain and other symptoms accompanying terminal illnesses. It said the origin of the word “hospice” was in the Middle Ages to describe a waystation, a place of rest and refreshment for pilgrims and travelers. I returned to my office and wrote a letter to Hospice, Inc. asking for any information they could send me regarding their work. Within a week or so I had several articles from professional journals which served to convince me that indeed hospice was the model of care for the dying which could serve them in a way hospitals at that time were unprepared to serve. Furthermore, I knew we needed a hospice in Phoenix and that I must share with others the information I had gathered. I called three members of my congregation – Dr. James Callison, a reconstructive surgeon, Dr. Walter Fox, a psychiatrist and former superintendent of Arizona State Hospital, and Blanche Hopkins, a nurse and housewife, and a psychiatric-social worker at Arizona State Hospital whose name I’ve forgotten, and arranged to have lunch at John’s Green Gables Restaurant at the southwest corner of 24th Street and Thomas Road.
Our luncheon meeting, in April 1976, produced a steering committee. We recruited attorney David Cocanower from our congregation, Genie Eide, director of home health care for Maricopa County, Eleanor Curran, director of nursing for Maricopa County, Dorothy Gerrard, director of Visiting Nurse Service, and eventually The Rev. Dr. Roger Johnson, chaplain supervisor at Good Samaritan Hospital, and began regular meetings at Camelback Presbyterian Church. I was elected chairman of the steering committee, and we set about informing ourselves thoroughly on the hospice concept of care for the dying. Cocanower and I drew up bylaws and articles of incorporation for the committee’s consideration and approval. After meeting several months, we found that there was another group in Phoenix that was also discussing the possibility of organizing a hospice. Dosia Carison, Ph.D., director of Center DOAR, a small agency serving the elderly at The Church of the Beatitudes, and Sister Madonna Marie of the Sisters of Mercy at St. Joseph Hospital were two of their leaders. The two groups arranged to merge their efforts, and I was again chosen to be chairman. Eventually, Sister Madonna Marie chose to separate from our steering committee to establish her own hospice at St. Joseph Hospital. While we had hoped fervently to avoid the splintering of our forces and potential funding base into competing entities, we were convinced that our work must proceed to develop the hospice model which accepts death as a natural process of existence, devotes energies and resources to the control of the symptoms and the delivery of compassionate care and support of the terminally ill and their families. Volunteers would be absolutely essential in providing such support.
Along the way the committee brainstormed regarding the name for our hospice. As we live in the Valley of the Sun, and as the people we hoped to serve were journeying through “the valley of the shadow of death,” we settled on the name we now have, Hospice of the Valley. But we also wanted to include the general public in our efforts, so we made a failed attempt to organize The Valley of the Sun Hospice Association, a membership organization with dues. A staff artist of the Phoenix Gazette, Tony Bustos, created our first logo. It consisted of a circle containing a stylized dove in flight over a valley below. With the help of Cocanower, we were incorporated in the summer of 1977 as Hospice of the Valley, a non-profit corporation, the first hospice in metropolitan Phoenix, the second in the state after Hill Haven Hospice in Tucson (which eventually failed), and the 51st in the nation. Members of the steering committee became the first board of directors, and I was elected the first chairman.
The beginnings of HOV were humble. In fall 1977, our board of directors was fortunate to enlist a new member, Sister Louise Marie Benecke of Catholic Charities, who was an expert in writing grant proposals. She had information from the U.S. Department of Health, Education and Welfare, now the Department of Health and Human Services, inviting groups to send grant proposals for the organization of hospices. Sister Louise Marie and I worked feverishly to prepare the proposal to send to HEW in time to meet the deadline. We also applied for a grant from the Flinn Foundation to help us open an office and begin training volunteers. We learned in the summer of 1978 that we had been awarded a grant of approximately $21,000 by the Flinn Foundation. We moved quickly to open an office and found space, through Eleanor Curran and Genie Eide, in a storefront owned by the County at 24th Street and Roosevelt. We had space enough for two small offices and a meeting room. We furnished the space with used furniture, an electric typewriter and a file cabinet. The first staff member we hired with the foundation funds was Joyce Vincent, with a master’s degree in counseling, to serve as coordinator of volunteers, demonstrating our commitment to the belief that volunteers are the heart and soul of hospice care. She notified churches and other community groups of HOV’s need for volunteers and organized our first volunteer training classes that were held in August 1978, at Maricopa County Hospital. Approximately 50 people attended. Members of the board of directors conducted the classes. James Callison, M.D., spoke about the medical aspects of terminal illness. My subject was the emotional and spiritual aspects in which I used “The Journal of a Dying Woman” by Maxine Shuppy, my late parishioner. Genie Eide, director of home health Care of Maricopa County, dealt with home health care; Dorothy Gerrard, executive director of Visiting Nurse Service, covered nursing care of terminally ill patients; and attorney Cocanower addressed the group on legal aspects of terminal illness. Mary-Audrey Mellor and Blanche Hopkins were in the first class of volunteers, and Mary-Audrey was the first HOV volunteer to serve the first patient, John Cohill, whose wife, Susie, became a very active supporter of Hospice of the Valley. MaryAudrey and Blanche became a team of two volunteer staff at a time when HOV could not afford to provide the number of professional staff needed. Together they initiated the “Scottsdale Pilot Project,” which was the basis of a team approach to geographical areas of the city and became an established procedure in making staff assignments. With their loving, wise and generous service, they helped our fledgling hospice through its infancy and stayed with it, as it became known throughout the state for its compassionate professionalism and willingness to help other cities organize their own hospices.
The beginnings of HOV were blessed. Without Sister Louise Marie Benecke’s grant-writing expertise, we might not have received the Flinn Foundation grant, and most likely would not have received the HEW Grant of $351,800. Her coming to us at the beginning when we had no funds at all, was a providential blessing. With a sense of achievement and celebration, we began to look about for more attractive, commodious quarters. David Cocanower and I discovered the perfect quarters for HOV in a lovely, peaceful setting at First Congregational Church at 2nd Street and Willetta near downtown Phoenix, which had plenty of space for all our needs, including volunteer training classes. We hired the late Al Hamby as our first full-time administrator and Greta Wiseman as nurse practitioner. We were on our way, but there would be hard times ahead as we cast about for ways to finance the services of HOV. We knew that the HEW grant would carry us only so far and that fees for service would not suffice because health insurance carriers did not yet recognize hospice care. Strange as it may sound today, HOV began by giving its services free and accepting any amount patients and their families were willing to contribute. It was a practice that could not be sustained, of course, but it helped spread the word about the unique form of care for terminally ill patients.
In order to become a full-fledged hospice, HOV had to find a physician to serve as medical director. Fortunately, Dr. James Callison, a member of the original steering committee and the succeeding board of directors, knew someone who, he felt, would fill the position admirably. Dr. Albert Eckstein, a vital, vigorous, compassionate physician was nearing retirement. He was widely known and highly respected by the medical community. He was a “dean” among doctors in that his spirit, wisdom and medical knowledge and experience commanded the highest regard among his peers. We were overjoyed when he accepted the position as medical director. Not only was he highly competent in that capacity, he also became a father figure to the staff, provided wise counsel to the Board of Directors, and was a steady, wise, strong, calming influence when personality conflicts threatened effective teamwork of the staff in the early years.
One day, in early 1977, Mary-Audrey Mellor came to see me at my office at Camelback Presbyterian Church and asked me to speak to her class in the School of Nursing at ASU regarding the hospice concept of care. Out of that first meeting and my speaking to her class grew an acquaintance and friendship, which would lead to one of the most fortuitous openings to the future HOV could possibly hope for. As noted above, Mary-Audrey became a hospice volunteer and has the distinction of serving HOV’s first patient. In addition to all of her very fine work as a volunteer and part-time nursing staff member, she became a member of the Board of Directors and shared our anxiety that the funds from the HEW Grant would be exhausted by the fall of 1981 and that our best fundraising efforts were not sufficient to prevent HOV’s own terminal illness of total depletion of resources. Anna Andrini Brophy had come to the rescue earlier with an Annual Wine Tasting that evolved into an annual silent auction of art and other valuables and high quality services. In 1980 Mary-Audrey, Julie Perkins, and Gay Wray organized a group of women in Paradise Valley called “The Friends of Hospice” to organize other very special fund-raising projects.
Mary-Audrey and the Friends of Hospice were acquainted with John Gardiner, whose Tennis Ranch at the base of Camelback Mountain on McDonald Road was the scene of The Senators’ Cup Tennis Tournament. Proceeds from the Tournament each year were given to a local charity. John’s wife, Barbara, who had died of cancer had received excellent care from the Hospice in Carmel, California, so when “The Friends of Hospice” approached him regarding the financial crisis confronting HOV, he offered without hesitation to make Hospice of the Valley the beneficiary of the Senators’ Cup Tournament that year. With a mere $50,000 remaining in HOV’s treasury, John’s gift was a providential blessing. Year after year, John Gardiner continued to designate HOV as the charity to receive the proceeds of the Tournament. His second wife, Monique, became a vital member of the team. Eventually, the funds received established an endowment, the income from which gave precious relief to HOV’s overstressed bank account. John has continued to be the most generous friend and supporter of Hospice of the Valley through the years. It is an understatement that HOV’s beginnings were blessed.
HOV’s beginnings were controversial. Although there were several hospices already in existence in England and on the East and West Coasts in the late seventies, the American public, including the medical community, were not generally familiar with the hospice concept of palliative care in a terminally ill patient’s home setting. This unfamiliarity created suspicion and misunderstanding. As we began to make contacts with physicians to inform them of our efforts to create an independent, non-profit hospice in Phoenix, we were accused of promoting “passive euthanasia” since hospice emphasizes control of the symptoms of a terminal illness and compassionate support of the patient and family rather than major curative efforts in the final six months of life expectancy. Underlying much of the resistance to our efforts was the unstated objection of physicians that we were intruding on their professional turf. They had a natural reluctance to support anything that might interfere with their physician/patient relationship.
Dr. Albert Eckstein, HOV’s first medical director, was primarily responsible for the change in attitude of many physicians as he educated them regarding the benefits of palliative care for terminally ill patients, emphasizing control of symptoms – especially pain – in service to the goal of maintaining the comfort of the patient. He was able to convince them that hospice could help them provide even more effective service to their patients. Dr. James Callison, through his publication of an article in the Maricopa County Medical Journal and speaking to the Maricopa County Medical Society, was also instrumental in winning physician approval of hospice. As we had no funds to mount a serious public education campaign it is fair to say that without the efforts of these two dedicated physicians and members of the hospice “team,” public acceptance of Hospice of the Valley would have been long delayed. Dr. Eckstein was a mentor and model for his successor, Dr. Howard Silverman, and his influence continues even after his death on October 20, 1994.
Three strategic decisions of the Board of Directors. There were three very strategic decisions taken by the Board of Directors in the early years. The first was to defer acquiring an inpatient facility until HOV achieved a very solid financial footing, as we were aware of the high costs of owning and operating such a facility. We had followed the experience of several hospices that moved too quickly to open an inpatient facility and found that they could not sustain the operational costs. The second decision in those early years with far-reaching results was to become a Medicare-approved hospice. Medicare had become an important source of payment for services to the elderly and now recognized that hospice home-care is a cost-effective alternative to hospitalization of terminally ill patients. Although some board members at that time advocated against HOV becoming a Medicare-approved hospice, most members concluded that HOV would not survive otherwise. Hospice of the Valley had three executive directors in the space of four years. None had the abilities or personal qualities required by a new medical/social service as yet unknown to the wider public and to some extent unsupported by the medical community. The board’s third strategic decision, therefore, was to employ Joan Lowell as executive director in 1982. During her 10-year administration, she gathered a fine staff that was able to work harmoniously together and achieved public recognition and approval—including that of the medical establishment. With John Gardiner’s help and Medicare reimbursement for service, a secure financial base was established. The crown jewel of Joan Lowell’s administration was the purchase of a very lovely residence at 15th Avenue and Myrtle for HOV’s first inpatient facility. It was named The Gardiner Home to honor John Gardiner, the person who had contributed the most to guarantee HOV’s future. The first time I toured the facility when it had been renovated for HOV’s use, I said to my wife, “A person could become well just being here.” In truth, there is a sense, a spirit about the place and staff which is conducive to peace and serenity. In fact, the testimony of the families of HOV patients overall is that the compassionate, professional, dependable service of the staff and volunteers has lightened their burden and given greater meaning to the very difficult experience of supporting a loved one on the journey through the “valley of the shadow of death.”
This is the end of my story, but it is only about the beginning and early years of HOV. Surely someone will take up the narrative where I have left off, for it continues to be a story worth telling.