History and Evolution of Hospice
The History of Hospice Care in the United States
You may be wondering how hospice became what it is today, especially in the United States. To understand modern hospice care, we first need to travel back to the Middle Ages.
The Origins of Hospice
During the Middle Ages, monasteries in Malta and throughout Europe operated places called hospices. These hospices provided rest and refuge to travelers making pilgrimages to the Holy Land (areas corresponding to modern-day Israel and Palestine).
They offered:
- Food
- Shelter
- Basic medical care
for travelers who became ill during their journey.
Over time, these hospices evolved into places that cared for people who were terminally ill and in need of comfort, good care, and sanitary living conditions. Most were operated by religious organizations, particularly within Roman Catholic traditions.
At this point in history, hospitals as we know them today did not yet exist. As medical knowledge advanced, healthcare gradually moved from religious institutions into the secular world. Eventually, hospices and hospitals became two distinct concepts.
The Birth of Modern Hospice Care
The concept of hospice care as we know it today emerged during the 1950s and 1960s, largely through the work of British nurse, social worker, and physician Dame Cicely Saunders.
Saunders observed that many patients experienced abandonment by their physicians as they approached the end of life. She believed healthcare should focus on the needs of the person, not just the disease.
She recognized that dying can involve:
- Physical pain
- Emotional pain
- Social pain
- Spiritual pain
Saunders conducted research on the use of opioids for pain management and developed new approaches to controlling physical pain. She combined these approaches with pastoral care, companionship, and emotional support.
Her work led to the creation of the first modern hospice for terminally ill patients: St. Christopher's Hospice in London. The hospice admitted its first patient in 1967.
Hospice Comes to the United States
In 1963, Saunders gave a lecture at Yale University, introducing Americans to the idea of specialized care for people who were dying.
The first hospice in the United States was Connecticut Hospice, founded in 1974 by Florence Wald and a team of nurses, physicians, and clergy. Wald had previously spent time working at St. Christopher's Hospice and helped bring Saunders' philosophy of care to the United States.
Around this same period, the first hospice legislation was introduced to provide federal funding for hospice programs, although it was not enacted at that time.
Growing Recognition
In 1978, the National Hospice Organization was established to promote hospice care throughout the United States.
Shortly afterward, a task force from the U.S. Department of Health, Education, and Welfare concluded that hospice care offered a more humane approach to caring for people with terminal illnesses and their families while potentially reducing healthcare costs.
Defining Hospice Care
In 1979, the Health Care Financing Administration (HCFA) launched demonstration programs across 26 hospices nationwide.
The goals were to:
- Evaluate the cost-effectiveness of hospice care
- Define what hospice care should include
- Determine which services hospice programs should provide
These programs helped establish many of the standards that continue to shape hospice care today.
Hospice Becomes Part of the Healthcare System
A major milestone occurred in 1983 when President Ronald Reagan signed the Medicare Hospice Benefit into law.
Following this change, many private insurance companies also began offering hospice benefits.
In 1993, President Bill Clinton proposed healthcare reforms that included hospice as a nationally guaranteed benefit. By this point, hospice had become an accepted and established part of the U.S. healthcare continuum.
The Shift Toward For-Profit Hospice Care
In the United States, hospice began largely as a volunteer-driven movement led by community-based nonprofit organizations.
However, after the Medicare Hospice Benefit became law, the hospice industry experienced significant growth. During the 1980s and beyond, there was a substantial increase in the number of for-profit hospice providers.
One reason for this growth was Medicare's fixed per-diem payment model, which pays hospices a set daily rate regardless of the amount of care provided. Critics have argued that this structure can create financial incentives to reduce services while maximizing profits.
Important Considerations When Choosing a Hospice
Not all hospice providers are alike.
Some research suggests that for-profit hospices, on average, may provide lower-quality care than nonprofit organizations. Studies have reported differences such as:
- Fewer nursing visits
- Fewer home visits overall
- Less direct patient contact
- Higher rates of patient disenrollment
Researchers have also identified concerns involving fraudulent billing practices and inappropriate patient enrollment among some providers.
That said, quality can vary significantly from one hospice organization to another, regardless of whether it operates as a nonprofit or for-profit entity.
For this reason, it's important to do your due diligence when selecting a hospice provider. Ask questions, review available information, and compare your options.
Most importantly, if you become unhappy with a hospice provider, you have the right to change hospice providers at any time.
To learn more about the history of hospice, please check the references.
References:
https://hospiceofmidland.org/blog/f/a-history-of-hospice
https://en.wikipedia.org/wiki/Hospice
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