Timelines
1979
The Rev. Dr. John M. Brndjar had a vision.
Having attended a seminar by Dr. Elisabeth Kubler Ross, a nationally known advocate for
hospice care, he was intrigued by her perspective on discussing the cycle of life and thoughts
on how to care for the terminally ill. “She always put the emphasis on life and living,
not on death and dying,” says Brndjar, then CEO of Lutheran Welfare Service of
Northeastern Pennsylvania, which is now part of Diakon Lutheran Social Ministries.
Embracing her concepts, he spearheaded a mission to offer hospice care in northeastern
Pennsylvania, his dream becoming a reality when Hospice Saint John opened in 1979 to serve
the needs of both terminally ill patients and their loved ones.
As reportedly the first Lutheran-sponsored hospice in the United States and one of the
first such services in Pennsylvania, Hospice Saint John still had to grow from concept to
program. “The first thing we needed to do was to get real information. I contacted the
first hospice in the U.S. at Yale University in New Haven—the Yale University Hospital System.
Many people migrated there to learn the concepts of the program,” says Brndjar.
Knowing the hospice movement had been under way in England for several decades, the LWS board
of directors in 1978 sent Brndjar abroad, so that he could visit programs there and bring home
what he had learned. He found that programs there used the same approach as in the U.S., serving
a person in all of his or her dimensions—physical, spiritual, and social. While they also focused
on serving patients’ families, their base of operations was different.
“In England, hospice programs always have a physical location, and a community-based
site always is an extension of their main efforts,” says Brndjar. “Ultimately,
in the U.S., it was reversed. More and more of the patients suffering from life-threatening
diseases wanted to remain in their home environment to receive pain management and palliative
care.”
Patients, he adds, “did not want to be isolated from family members and the familiar
surroundings of their homes, spending days, weeks, and even months in lonely and impersonal
institutional environments, and receiving—all too often—aggressive, painful, and debilitating
medical and surgical treatments which were no longer appropriate since they were focused on
‘curing’ and curing was no longer a viable option.”
While program concepts were being developed, funding avenues also were being explored.
Grant writer Thomas Cooney secured a three-year $500,000 grant from the Administration on
Aging within the U.S. Department of Health, Education, and Welfare’s (now known as
Health and Human Services). That assistance came partly because of federal government
interest in northeastern Pennsylvania's high concentration of lung cancer diagnoses.
Initially, Hospice Saint John focused its efforts on caring for those with cancer. Over time,
however, the program expanded to serve people with a variety of illnesses, including heart and
end-stage renal disease, as well as pediatric conditions. In the late 1980s, Hospice Saint John
found itself serving individuals affected by the newly discovered disease of HIV/AIDS.
“We had a new commitment to the community. Individuals with HIV and AIDS where returning
to [the region] after exhausting all possibilities in metropolitan areas,” says Brndjar.
“This was a milestone for the organization. Hospice itself needed to look at its own
focus and had to find a comfort and stability in terms of its own capacity to serve individuals
with the disease.”
During its initial years, the program also faced the continuing need to educate the medical
and general communities about hospice care. The organization also played an essential role in
advocating for palliative-care reimbursement by Medicare.
“Simultaneously, we were learning how to provide hospice care, and we were educating
people in the medical community as well as the community-at-large that there was a different
type of care besides the medical model. Not everyone needed to be treated until the end of
their disease and die in a hospital,” says Philip Decker, the program’s first
director.
Even more than a quarter-decade after the program’s inception, education is still a
continuing need, though reimbursement issues have subsided with the Medicare Act, passed in
1983 partly as the result of the efforts of Decker, his national colleagues, and U.S.
legislators.
As a member of a newly formed national hospice organization, Decker traveled to Washington
weekly to advocate for reimbursement. Admitting that he sometimes felt overwhelmed, he says he
stayed focused on Hospice Saint John’s mission. “If you met with just one patient
and family and helped them choose the course of the rest of their life, then you would know what
gave us motivation to succeed. It’s a great thing to do.”
Of course, employees have made the organization what it is today, he adds. “Everyone
who was there in the beginning did a remarkable job, and Hospice Saint John carries on that
tradition as it still has a great reputation today,” says Decker.
Debbie Search, executive director of the Diakon program in 2004, agrees. “All
employees—past and present—contribute a great deal. Hospice is part of who they are and not just
another job. It is their ministry of service, and they are dedicated to providing care at a very
vulnerable time in the life of the patient and their family—with a focus on enhancing their
quality of life.”
Though Hospice Saint John has expanded its geographic reach and programs, especially around
children’s services and community education, it remains focused on its basic mission:
“Hospice care will always be an essential gift,” says Brndjar, “that
people can bring to their fellow human beings.”
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