Death with Dignity: 50th Anniversary of America’s First Hospice
A Hidden in the Oak
*This article was originally published by Yankee Institute.
The only certainty of life is death.
Dying can be terrifying, isolating and rife with despair. Along with deliberating existential questions and/or rectifying oneself with God, imagine suffering from improper medical attention. This was reality, not so long ago.
In the late 19th century, terminally ill patients faced undignified treatment or were even “refused admission to the hospital entirely” due to “availability of space and resources” or race and socio-economic class, according to Doctors, Death, and Denial: The Origins of Hospice Care in 20th Century America by Sarah E. Pajka.
A dignified death was often associated with home-based support as it “allowed patients to receive care from a visiting physician while maintaining autonomy and some connection to the living,” Pajka states; however, only wealthier members of society or those with families could afford and accommodate such care. For those on the margins or alone, the hospital was one of the few options — and even then, “patients were often neglected, and many treatments were known to be unpleasant.” Almshouses were another avenue, but, as Pajka finds, they were “intended more to keep the dying off of the streets than to help them obtain a comfortable death, and [were] reserved for patients who were very poor, homeless, or without family to care for them.”
The problems were magnified during the Great Depression, especially at public hospitals, which saw more than 400 institutions shuttered and the use of nearly 20,000 beds eliminated due to a lack of funding.
All of this shaped the outlook of Florence Wald — a former dean of the Yale University School of Nursing, and a Branford native. Growing up in the early 20th century, she recognized the flaws and inhumane nature of medical care toward terminal patients, telling the Associated Press (AP), on Nov. 26, 1971, that death is “a period of life that can have a lot of meaning. It can be content, full of joy, with lots of reminiscing.”
But death needed to be “more human and meaningful,” as she stated in the same AP article. Throughout her career, Wald’s passion for palliative care revolutionized the medical profession, with her co-founding “The Connecticut Hospice,” the first in the United States, on June 11, 1974.
Since then, more than 5,200 hospices have been established in the country and millions have sought both in-patient and home care services.
This is the story of how the first hospice was founded in Connecticut 50 years ago.
Weary Pilgrims
Derived from the Latin word ‘hospes’ (meaning host or guest), hospice’s etymology stems from medieval times, when pilgrims en route to the Holy Land “could find rest and refuge inside monasteries,” according to Care Plus Hospice. As the site describes, “Over time, those places of rest came to be known as ‘hospices,’” adding, “Because a great many of those travelers were very ill when they arrived, many of them spent their last days at these monasteries.”
Though some researchers argue hospices, as they are known today, existed in Europe much earlier than the 20th century, American hospices trace their lineage to London’s St. Christopher’s Hospice — named after the patron saint of travelers — which was established by Dame Cicely Saunders in 1967. According to the British Medical Journal (BMJ), Saunders “more than anybody else, was responsible for establishing the discipline and the culture of palliative care.” The site continues:
“She introduced effective pain management and insisted that dying people needed dignity, compassion, and respect, as well as rigorous scientific methodology in the testing of treatments. She abolished the prevailing ethic that patients should be cured, that those who could not be cured were a sign of failure, and that it was acceptable and even desirable to lie to them about their prognosis.”
Florence Wald was fascinated by Saunders’ work, even prior to St. Christopher’s founding. After all, by 1967, Wald was 50 years old — she was born on April 19, 1917, in New York — and had an extensive resume of her own. According to the Branford’s Education Hall of Fame, she earned a bachelor’s degree from Mount Holyoke College in 1938 and then a master’s from Yale in nursing. Throughout her professional career, Wald excelled in research, joined the Signal Corps during World War II and then, in 1955, began teaching at Rutgers University School of Nursing.
Two years later, Wald joined the Yale School of Nursing as the director of the Mental Health and Psychiatric Nursing Program. The role was short-lived, as the university promoted her to dean of the School of Nursing in 1959. As dean, Wald introduced a new ethos, convinced “that the best nursing practices were those that addressed the patient rather than the disease,” according to Pajka.
This passion for nursing stemmed from early childhood, particularly from her parents (who, as registered Socialists, were “committed to social justice” especially toward the treatment of immigrants) and her own health difficulties due to a chronic respiratory ailment.
“[My parents] saw nursing then was not just a case of hands-on care for patients, but also enabling new immigrants in how they would be able to get the kind of healthcare that they needed through government funding and so forth,” Wald recalled in a tribute film when she was inducted in the Connecticut Women’s Hall of Fame in 1999. “I always wanted to be a nurse from childhood, and that was partly due to the fact that I had a lot of illness in my childhood. And my mother was not a nurse, but she was very nurturing and caring person.”
Still, the friendship Wald formed with Saunders would become one of— if not the— most consequential in establishing hospice care in America. Their bond first formed when the English medical professional toured the United States in 1963, during which she stopped at the Yale School of Medicine and found a receptive audience. The medical community’s enthusiasm toward Saunders’ end-of-life care ideas spread akin to “something like a prairie fire,” as Wald shared in the Connecticut Women’s Hall of Fame film. Wald herself was “deeply affected” by the passionate talk, so much so that she invited Saunders to return in 1965.
The hospice care that Saunders promoted “seemed as if it was just the place, that medium, that fit my own personality,” Wald told the Connecticut Women’s Hall of Fame. The two developed a “fast friendship,” as Pajka describes, and engaged “in frequent correspondence, writing numerous personal letters to one another, and including notes in the margins of their respective newsletters to maintain a dialogue for their parallel facilities.”
By 1968, Wald — determined to learn more under Saunders’ tutelage — had resigned as dean and moved to England for a month to study at St. Christopher’s. The decision would change her life.
The Principles of Care
When she returned to the United States, Wald felt called to develop a hospice, adapting the practices at St. Christopher’s to fit the American healthcare system. As Pajka highlights in her history, the future hospice founder recounted to the Foundation of Thanatology in 1972 the “moment when she ‘stood at the crossing of the main arteries of the Yale-New Haven Medical Center — York and Cedar Streets, and felt overshadowed by the sea of buildings; asked myself, “Can it happen here? By “it,” I meant having a setting where people can die with dignity.’”
Fortuitously, in her recollection, “three men — two physicians and one reverend — arrived at the corner,” where they all agreed to “discuss the question over lunch.” One of the three included Rev. Edward Dobihal, who founded Yale New Haven Hospital’s Religious Ministries Department (which is now called Spiritual Care). Motivated by Wald’s vision, he also traveled to England to visit St. Christopher’s. This group regularly met in a New Haven church basement, and would expand, looping in Katherine Klaus, RN; Father Canny, a Catholic priest; Morris Wessel, a pediatrician; and Ira Goldenberg, an oncological surgeon.
To Wald, the hospice needed collaboration from temporal and spiritual professionals to assist in proper end-of-life care and incorporate activities like music and the arts to establish a comfortable environment.
By 1971, the group formed Hospice, Inc., a corporation that made at-home visits and was intentionally not “tied to any existing medical facility” so as to “exist as its own independent entity,” according to Connecticut Explored; as presented in AP’s 1971 report, the organization’s philosophy statement read: “It is necessary for all in hospice to be both strong and weak, giver and receiver, and to be strengthened by bonds between people and not only one’s internal resources.”
Despite its uniqueness, Hospice, Inc. still grappled with “obtaining licensure” since the Nursing Home Association (NHA) lobbied that the new organization would “create competition for patients among long-term care facilities,” according to Pajka’s history. It took years to finally convince the NHA “that it was not a threat.” Nevertheless, the growing pains aside, the hospice cared for nearly 200 patients between March 1974 and April 1976, and amassed 26 paid staff and 46 volunteers, as reported by the Yale Daily News (April 20, 1976).
Within that time, Wald and her companions also achieved another milestone: on June 11, 1974, the Connecticut Commission on Hospitals and Health Care approved construction of a $2.6 million facility in Branford, as noted by Today in Connecticut History. Meanwhile, the group also received grants from the state with support from Gov. Ella Grasso and the National Cancer Institute. Officially opening in 1980, this 44-bed facility — known as The Connecticut Hospice — has been recognized as the first in America. As it did at its establishment, the hospice has 10 principles of care:
The patient and family are regarded as the unit of care.
Services are physician directed and nurse coordinated.
Emphasis is on control of symptoms (physical, sociological, spiritual and psychogenic).
An interdisciplinary team provides care.
Trained volunteers are an integral part of the team.
Services are 24 hours a day, 7 days a week, on call, with emphasis on availability of medical and nursing skills.
Family members receive bereavement follow-up.
Home care and inpatient care are coordinated.
Patients are accepted on the basis of health needs, not on ability to pay.
There are structured systems for staff support and communication.
As Today in Connecticut History describes, the hospice “quickly gained a national reputation for its pioneering techniques”; by the 1980s, the U.S. Congress approved legislation that “allow[ed] hospice services to be covered by Medicare, making hospice a viable option for most Americans,” according to Connecticut Explored.
Wald’s vision — to bring dignity to those terminally ill — was finally realized, transforming care in America.
Into that Good Night
For her work, Wald was inducted into the National Women’s Hall of Fame and the Connecticut Women’s Hall of Fame, as well as honored as a “Living Legend” by the American Academy of Nursing. But, even with all the accolades and recognition, Wald still tended to those under her auspices, well into her elderly years.
After a lifetime of providing compassionate care to the dying, she died at 91 years old on Nov. 8, 2008, at her home in Branford.
It is an understatement to say that Wald’s contributions to the U.S. healthcare system and medical practices toward terminally ill patients were revolutionary. Along with Saunders, she helped change an ethos, recognizing that all our earthly pilgrimages must — at some point — end and that a good death is important. Furthermore, as Pajka states:
“CT Hospice existed as the antithesis to the type of medical care that had prevailed for so long …Perhaps even more impressive, CT Hospice and those who founded it defied medical authority of the time, openly admonishing their past denial of death and subsequent low care quality for this specific set of patients. Working tirelessly on behalf of those who had been cast aside by this system, the founders of CT Hospice refused to let go of the dream of death with dignity and in the end, they were tremendously successful.”
The fact that Connecticut is the bedrock of hospice care throughout the United States should be celebrated and fill us with pride. Yet in recent years, the term “death with dignity” — at least, the dignity Wald pursued — has been purloined by groups in Europe, Canada and the United States to promote euthanasia, which is antithetical to respecting end-of-life care.
While euthanasia is illegal in most U.S. states, including in Connecticut, legislation, nevertheless, has been introduced to reverse that. It would be a sad day if this state — the home of hospice care — passed a law allowing people to commit suicide.
Euthanasia is utterly opposed to protecting the dignity of the human person and, ironically, is utterly opposed to Wald’s memory and those who founded The Connecticut Hospice.
To those who are considering ending their own lives: your life matters. You are more than any illness. You are more than your struggles. We can never know how much our actions, even in our final moments, matter in the trajectory of someone else’s life (or, to believers, the state of our souls). Although death is an inevitability, it is still noble and important to seek a ‘good death’ with the knowledge that someone cares for you.
That is what Wald’s work shows us.
Till next time —
Your Yankee Doodle Dandy,
Andy Fowler
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Interesting piece of work . Thank you.