Episode 73: Florence Wald's early years and the state of care for the terminally ill in the 1930s

In Latin, the word hospice means to host a guest or stranger; Florence Wald, centered her life on hosting a dignified end of life process that honored the patient’s personhood. Her ideas around death and dying led to the formation of the first modern hospice in the United States in 1974. Because of her, there are thousands of hospice programs around the country- serving millions of patients and families.
Saul Ebema: In Latin, the word hospice means to host a guest or stranger; Florence Wald, centered her life on hosting a dignified end of life process that honored the patient’s personhood. Her ideas around death and dying led to the formation of the first modern hospice in the United States in 1974. Because of her, there are thousands of hospice programs around the country- serving millions of patients and families.

Florence’s pioneering efforts have forever changed the heart of the American society to accept and engage in an end-of-life process that she described as “appropriate, understanding, and natural.”

And in 1998, she took her rightful place in the National Women’s Hall of Fame with legends such as Eleanor Roosevelt, Helen Keller, Harriet Tubman, and Florence’s idol, Lillian Wald.

You are now listening to Personhood! The story of Florence Wald and the Hospice movement – Episode One and I am your host Saul Ebema  

On April 6, 1917, just 13 days before Florence Wald was born, the United States decided to enter World War I. President Woodrow Wilson gave a speech to Congress on April 2, 1917 asking for them to declare war on Germany. In his speech he said that the U.S. would go to war to “fight for the ultimate peace of the world.” And on April 6, 1917- the US military marched to war.

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Saul Ebema: When World War I initially broke out across Europe in 1914, it was mainly between the central powers led by Germany, Austria, and Hungary against the Allied countries led by Britain, France, and Russia.

At the start of the war, President Woodrow Wilson declared that the United States would remain neutral.

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Saul Ebema: Just as America went into the battlefield against Germany, on April 19th, 1917, Florence Wald was born into a German family to Mr. and Mrs. Schorske in a divided world. Although the Schorske family were second-generation Americans, their values and culture were heavily influenced by their German heritage.

Before the war started, the Schorskes spoke German at home so the children would be bilingual. However, during the war, fear of isolation turned them to English speaking.

Deeply rooted in Bronx, New York, The Schorskes exposed their children from an early age to the ideas of kindness, love, care, and equality for all.

Barb Newton: In interviews and presentations, Florence often said that her parents were members of the socialist party and as such, she was exposed to a variety of social justice-based causes from a young age.

Her parents often volunteered to teach English to the immigrants on New York’s Lower East Side and raised Florence and her brother Carl to show concern for others and advocate for social justice.

Saul Ebema: This upbringing deeply rooted in the ideas of universal equality and compassion, would ingrain Florence with deep-seated beliefs about the world and how people should fundamentally be treated. These concepts would later directly influence her practices around hospice care.

Danelle Shoemaker: Despite of her generally positive upbringing, life was not always perfect in Florence’s early childhood. She experienced a number of health issues as a young child that required frequent hospitalizations.

In 1926, when Florence was 7 years old, her family traveled to Florida to facilitate Florence’s recovery from an episode of life-threatening pneumonia.

On the return trip home, they stopped in Washington, DC, and there Florence was diagnosed with scarlet fever.

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Brian Mackender: Scarlet Fever was a leading cause of death in children during the early 20th century. When a child was found to have scarlet fever, they went through weeks of isolation in the hospital.

Saul Ebema: For 7-year-old Florence, this meant weeks of isolation in Garfield Hospital. Florence later described that experience as being trapped in a “vintage Civil War hospital.”

Barb Newton: This was the first time Florence had been separated from her family, and it was a challenge for everyone. Her private nurse, Eunice Biller, from Richmond, Virginia, cared for Florence like she was her own child. Eunice Biller understood the impact of scarlet fever on Florence and did everything to keep her spirits up. In addition to her care, she provided spiritual support, music therapy, art and craft and toys for Florence to play with.

Saul Ebema: Florence would later reflect that it was the care of her nurse, Eunice Biller that made her “feel like a person, not a patient with a contagious disease.”

Danelle Shoemaker: When Florence’s mother visited, due to the isolation policy at the hospital, she was not allowed into the hospital. But Eunice Biller, her nurse would carry Florence to the window, where Florence would wave to her mother 3 floors down.

From this time forward, Florence was committed to becoming a nurse. Her favorite pastime as a child became playing nurse to the dolls she had at home.

Saul Ebema: It was that kind of compassionate care which valued the sense of personhood that would later evolve into the hospice philosophy of care.

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Saul Ebema: When Florence was 10 years old, the family traveled to Germany to reconnect with their roots and visit with the extended family. She loved it there.

In 1932, Florence and her mother returned to visit family in Berlin- this time, they found an entirely different Germany. The Nazis were promoting anti-Semitic activities and organizing pro-Hitler rallies. The country seemed to be filled with unexpected outbursts of hate and violence towards the Jewish citizens.

This validated what the Schorskes had been reading in the U.S. papers and led them to help Jewish families immigrate to America.

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Saul Ebema: In 1934 when Florence was 17 years old, she decided to go to college.

Barb Newton: From a young age, Florence was always a determined girl. So, when she broke the news about her desire to go to college to her father, he was not happy. Her father, like many men of his generation did not believe that women should go to college, and he discouraged her from doing so.

Remember, this was also the period of the great depression in America, but her family had the means and could afford her college education.

Saul Ebema: Florence was not the person to easily take no for an answer. After some convincing, Florence’s dad allowed her to attend Barnard College and live at home.

Barb Newton: Florence however, had another idea. She chose to attend—Mount Holyoke College—which meant she would live hours away from home in South Hadley, MA. Her father was not happy with her college choice, but he allowed Florence to begin a new and independent life.

Saul Ebema: Meanwhile, the American healthcare system that she would later reform, was being hit hard by the great depression.

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Saul Ebema: Patients and donor organizations could no longer afford to make donations to voluntary hospitals and those hospitals struggled to stay afloat. Many people felt hopeless, like they were living in a boulevard of broken dreams.

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Brian Mackender: Approximately 20,000 beds and 418 hospitals were withdrawn from use during that time, and private institutions were forced to take on some of the burden to care for sick patients.”[1]

This difficult period led to a social consciousness that called for action to help improve the care for people with tuberculosis, and those with terminally illness.

In an article that appeared in Hospitals: A Magazine for the Hospitals in 1936, stated that the system of care for the terminally ill was categorized as inadequate or nonexistent care.[2]

Abrams in his book, “Spitting is Dangerous,” writes that doctors did not want to be surrounded by terminally ill patients because it showed the limitations of their skills and of the medical world.

Saul Ebema: If a patient was deemed “incurable” at any point during the treatment process, they were immediately discharged.  In fact, patients that fell under this classification were often refused admission to the hospital entirely because of the “incurable policy.”

Danelle Shoemaker: The incurable policy was actually similar to the current practice of triage. During disasters or large-scale emergencies, responders designate “color tags” for patients based on the priority of their immediate care and transport.

Patients who are expected to die are given black tags, matching those of patients who have already died, and are only treated and transported after all other patients have received care, including those with non-life-threatening conditions.4

The mantra behind this system is provision of the “greatest good for the greatest number of people,” which often entails giving priority to some patients while others are neglected. 5

Saul Ebema: Some historians suggest that the refusal to admit terminally ill patients to the hospital in those times was motivated by self-serving motives. They believe that the incurable policy existed as an assurance of low mortality rates, during a time when hospitals had reputations to build.

If hospitals avoided admission of those patients expected to die, they could boast of higher cure rates than their competitors, and patients who could afford to pay would be more likely to choose their hospital for care. More paying patients, of course, meant better business for the hospital.

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Saul Ebema: In those times, terminally ill patients without money or family were sent to the almshouse as a last resort.

Brian Mackender: Almshouses were public charity centers created to house the chronically ill.

While almshouses were intended as refuges for those close to death, they were typically primitive, unpleasant, and were unable to provide real treatment or pain relief.

Dependence on almshouses was intended more to keep the dying off of the streets than to help them obtain a comfortable death, and was reserved for patients who were very poor, homeless, or without family to care for them.

Saul Ebema: Tuberculosis patients who were terminally ill were sent to sanatoriums.

Here is a piece from the Oregon experience

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Saul Ebema: In the eyes of the medical community in the 1930s, late-stage tuberculosis, was every bit a hopeless condition and the presence of tuberculosis patients in hospitals was seen as pointless, even outright dangerous.

It was argued that patients with tuberculosis, wasted space and resources that could be used for other more treatable cases. More importantly, they were considered infectious and could spread the disease to other people in the hospital.

The solution to the rejection of tuberculosis patients led to the creation of sanatoriums.  

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Saul Ebema: Tom Walsh, in his book “Community Health,” records a quote from William Spear, a doctor at the Oakdale Sanatorium near Iowa City, Iowa. William Spear described his experience with open-air porches as follows:

“When I arrived, they were behind the times in terms of surgical treatment of tuberculosis (Tuh bur kyuh low suhs). Patients were forced to stay in bed in open-air cottages. You froze them in the wintertime and roasted them in the summertime. Patients didn’t leave their beds unless it was absolutely necessary.”

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Saul Ebema: The location of sanatoriums tended to be away from towns and railroads and at higher elevations. The geographical isolation made sanatoriums difficult to reach for visitors. Even if visitors could reach the sanatorium, it was often discouraged.

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Saul Ebema: The avoidance of patients with cancer, the other prominent “incurable” disease at the time, was just like that of tuberculosis. Unlike tuberculosis, cancer was not fended off and it was rarely beaten.

Brian Mackender: Survivors were usually those who had undergone extensive surgery and even then, the disease could return. Due to its high fatality rates and the lack of promise in its treatments, medical authorities like the American Medical Association were reluctant to address the disease, and for the most part, its address was seen as a waste of medical time. The majority of care for terminally ill cancer patients was left to religious associations and took place in almshouses or centers resembling hospitals. A few large centers like Calvary Hospital in New York City existed to provide charity comfort care for cancer patients and were staffed by nuns rather than physicians.

Saul Ebema: The 1930s was a tough time for the terminally ill! With the exception of the government creating the National Cancer Institute in 1937, little progress was made in caring for the terminally ill. Regardless of where the death occurred, in the first half of the 20th century, the dying process was not considered a part of medicine. It lacked the sense PERSONHOOD!

End notes

This podcast is written and produced by Saul Ebema. Our historians are Barb Newton, Danelle Shoemaker, and Brian Mackender. This is the first of many episodes to talk about Florence Wald and the Hospice movement in the United States.

This podcast is recorded at Audiohive podcast studios in Joliet, IL and our studio engineer is Brian Mackender.

[1] John Gabriel. “The Hospital and the Changing Social Order,” 17.

[2] Ernst P. Boas, “A Community Program for the Care of the Chronic Sick,” Hospitals: A Magazine for the Hospitals of the United States and Canada February (1936): 18-19.

[3] Carl Voegtlin, “Approaches to Cancer Research,” National Cancer Institute Journal 1 (1940): 15.

(4) Sarah E. Pajka, “Doctors, Death, and Denial: The Origins of Hospice Care in 20th Century America.” 2017.

(5) Beth P. Houser and Kathy N. Player, “Pivotal Moments in Nursing: Ladies who changed the path of a profession.” Volume 11, 2007.
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