You may be wondering how hospice became what it is today, especially in the United States. Well, first we have to travel back in time to the Middle Ages. At this time, there were places in Malta, Europe ran by monasteries called "hospices". These "hospices" provided rest and refuge including food, shelter, and basic medical care to travelers who fell ill while journeying to the "Holy Land" (areas corresponding to modern Israel and Palestine). This later transitioned into general care of the terminally ill who were in need of good care and sanitary conditions, but these places were still largely run by religious orders. For example, hospices were a big part of Roman Catholic tradition. But, this was also before hospitals were a thing. As medical knowledge increased, medicine and healing moved from the church into the secular world. Hospices and hospitals became two different concepts.
The concept of hospice care as we know it today, developed in the mid-20th century, in part due to a British nurse and physician named Dame Cicely Saunders back in the 1950s and 1960s. Saunders discovered that many patients experienced abandonment by their physicians as they approached the end of life. She emphasized the importance of prioritizing the patient's needs over solely treating the disease. Recognizing that dying can cause physical, emotional, social, and spiritual pain—she conducted experiments with opioids to manage physical pain and devised a system for pain control. Shen then combined pain management with pastoral care, and companionship and pioneered the establishment of the first modern hospice for terminally ill patients. The hospice she established was called St. Christopher's Hospice and was located in London. The first patient was admitted in 1967.
In 1963, this model of hospice spread to the United States. This was first fueled by a lecture Saunders gave to Yale University where she introduced the idea of specialized care for the dying. The first hospice in the United States was Connecticut Hospice. It was founded in 1974 by Florence Wald (dean of the Yale School of Nursing who also temporarily worked at St. Christopher's), and a group of nurses, doctors (two pediatricians), and clergy. Around this time, the first hospice legislation was also introduced to provide federal funds for hospice programs. However, the legislation was not enacted at the time.
By 1978, the National Hospice Organization was established to promote the concept of hospice care. The U.S. Department of Health, Education, and Welfare task force then reported that “the hospice movement as a concept for the care of the terminally ill and their families is a viable concept and one which holds out a means of providing more humane care for Americans dying of terminal illness while possibly reducing costs. As such, it is the proper subject of federal support.”
By 1979, the Health Care Financing Administration (HCFA) stepped in to initiate demonstration programs across 26 hospices in the United States to determine the cost effectiveness of hospice care and to define what hospice is and what services it should provide.
In 1983, President Reagan signed the Medicare Hospice Benefit into law. Many third-party payer insurance plans started adding hospice benefits as well. Then, in 1993, President Clinton created a health care reform proposal that included hospice as a nationally guaranteed benefit. This is when hospice care became officially accepted as a part of the U.S. health care continuum.
So, basically hospice in the United States transitioned from a volunteer led movement that was organized by community-based nonprofit organizations to a for-profit model in the 1980s when the Medicare Hospice Benefit was signed into law. There was a significant increase in the number of for-profit hospices, because they were able to take advantage of the fixed per-diem payment model from Medicare, where they could maximize profits by providing fewer services to patients.
While not all hospices are alike, unfortunately, some research indicates that for-profit hospices often deliver inferior care in comparison to nonprofit counterparts. These studies reveal disparities such as reduced nursing attention, fewer home visits, and increased patient disengagement within for-profit facilities. The profit-driven model has also led to issues such as fraudulent billing practices and improper patient enrollment. It's important that you do your due diligence before choosing a hospice. However, please know that if at you are unhappy with a hospice provider you can change providers at any time.
If you are interested in a questionnaire of the top 20 questions to ask when you are deciding which hospice provider best meets the needs of your partner, considering joining the Treehouse! All you need is a House Pass!
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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