THE ORIGINS AND AUSPICES OF HOSPICE
How Supportive Hospice Care for End of Life Came to Be and Why.
Max Diamond, M.D. and Lior Matian
January 4, 2022
Our familiarity today with the concept of hospice care for end of life —although sometimes still misunderstood by the medical community and patient families alike— has grown from a rich and progressive movement sometimes counter-intuitive to the customary health care practiced at its inception.
Compassionate care to ease the final days of patients with untreatable terminal illness has not always been the standard. Since the beginning, creating an optimal end-of-life experience for patients and their families through hospice remains a work-in-progress, with protocols customized to each individual and situation, especially in the advent of medical advances.
The essential care-giver team that provides hospice at end of life typically turns out to be a combination of family members assisted by visiting hospice nurses at periodic appointments. However, hospice care may also be dispensed in profession care facilities (assisted living, retirement/nursing home, hospice houses, or even a local hospital. Yet, overall, hospice has come to be administered predominantly in the home environment most familiar to the patient. Essentially, hospice care serves patients who are terminally ill with a life expectancy of six months or less, although longer lifespans have occasionally exceeded hospice time limits, which can be reinstated or extended.
Although attitudes have improved overall with more patients and families accepting of hospice services, the care itself remains largely unchanged over the last 25 years. This article explores the origins and auspices of hospice care.
History
We can trace the earliest concepts of hospice, or compassionate care, back to the mid-Middle Ages in Europe and the Middle East. It was time when the nations saw the crossing of borders and continents for religious travel in order to visit the Holy Land. Known for its warm Mediterranean climate, the way station of Malta came to be the home of the first hospices, historians believe (circa 1065). The prolongation of the Crusades during the 1090s brought the untreatable who approached end of life into consecrated treatment centers. There, for nearly 700 years, and in Rhodes, Greece, the Knights Hospitallers of the Order of St. John of Jerusalem were known to care for the gravely sick and dying who had headed to or returned from their pilgrimage. Historic documents indicate that the caregivers of this Christian military order (later, Templars) demonstrated an attitude of compassion for infirm voyagers at the unanticipated end of their lives. The knights’ service focused on a holistic perspective to palliative care that has led to what we know as hospice care today.
Perhaps due to the Templars French origins and places of treatment in France, when their presence started to wane after medieval times, the Daughters of Charity of Saint Vincent de Paul (Catholic) picked up the relay of compassionate care in the 1600s in France. The hospice field then started to spread throughout Europe and beyond.
In 1840, Mary Aikenhead —unconnected to the Knights/Templars— began comparable work via a shelter in Dublin, Ireland that mainly cared for the dying. In 1843, Jeanne Garnier founded L'Association des Dames du Calvaire providing care at end of life in Lyon, France, and a number of other hospices to follow before the turn of the century. The movement soon spread across Europe and the ‘new’ continents. In 1879, Irish Religious Sisters of Charity opened Our Lady's Hospice in Harold's Cross, Dublin, which hosted nearly 20,000 patients dying from tuberculosis and cancer. In 1890, the organization founded the Sacred Heart Hospice for the Dying in Sydney, Australia (followed in the 1930s at Melbourne and New South Wales).
During the Second Industrial Revolution, Lancet and the British Medical Journal help raise the consciousness of the public and medical professionals in the United Kingdom to the concerns of the impoverished terminally ill. Each journal published articles on the necessity of quality care with more hygienic conditions, ushering in the reform of deficient medical treatment facilities. In 1891, Clara Maria Hole, Mother Superior of Sisterhood of St James' (Anglican), founded the Hostel of God hospice in London, England. Three other city hospices followed. By 1892, Friedenheim Hospital there offered thirty-five beds to terminal tuberculosis patients. In 1899, the Servants for Relief of Incurable Cancer opened St. Rose's Hospice in New York City, USA. Their work later encompassed six other locations in different cities. Other hospice development also simultaneously reached Australia with the opening of noteworthy facilities that included Adelaid’s Home for Incurables (1879) and Sydney’s aptly named Anglican House of Peace for the Dying (1907). Likewise, in 1905, the Irish order Religious Sisters of Charity, again, opened an additional shelter for the unfortunate of London, where it operates to this day, under the name of St. Joseph’s Hospice.
This may likely be the first use of the term ‘hospice’, a variant from ‘hospitaller’ (or the French meaning of ‘host’ and ‘hôpital’) derived from Medieval Latin ‘hospitālārius’ or ‘hospitum’, in which we recognize ‘hospitality’ or a safe place of repose. In the century since, the word hospice has come to mean compassionate social and medical care at the end of life.
Advocacy
Concern for the welfare of others at the cost of one’s personal sacrifice has almost always led to a change in social convention—not necessarily instigated by governments or institutions as much as by dedicated and visionary individuals.
Over the centuries, in its development from Middle Eastern to Western society, the hospice framework based on the Roman Catholic tradition of hospitality for the ill to die comfortably has continued to evolve. Always an aspect of social change, today, we envision the concept of hospice to encompass palliative care for the sick and dying relegated to hospitals, nursing homes, or other institutionalized care, not excluding at-home health care services. In 1967, Dame Cicely Saunders, a registers nurse, designed the world’s first modern hospice treatment in Britain. Her own chronic medical difficulties pushed her to consider a career in modern medical social work. Her treatment for a dying refugee from Poland eventually engendered Saunder’s two-fold perspective. In the same way that medical care must provide palliative comfort for a dying patient’s’ physical pain and symptoms (one), a counterpart compassionate care must tackle their personal fears and social anxieties (two). Upon that refugee's demise, the nurse began practicing as a volunteer at St. Luke's Home for the Dying Poor in London. A resident doctor practicing medicine there, aware of her concerns, convinced her that the most effective way to advocate change for the terminally ill within the medical system would be for her to become a doctor herself. Thus, she commenced medical school, all the while still volunteering at St. Joseph's Hospice, where she eventually took a physician’s post upon completing her medical degree in 1957.
Dr. Saunders’ practice focused on the patient, rather than on his or her illness, as the essential; and, advocated for her colleagues to do the same. She introduced what we recognize today as the concept of 'total pain' (both psychological and spiritual dis-ease, combined with physical discomfort); administered opioid medication to alleviate physical pain; included in treatment the concerns of the family; and, through St Joseph's Hospice, established the fundamental guidelines of contemporary end-of-life hospice care as we know it today. Her work has contributed to the expansion of such treatment centers since the 1970s to date. Such that, contemporary medicine prescribes hospice as a place or manner for patients to complete their end of life in comfort and compassion. Hospice focuses more on the patient’s wishes than on the disease’s demands.
In 1963, Dame (her British honorary title) Cicely Saunders began to circulate her modus operandiworldwide, starting with a series of speaking engagement throughout the USA. In 1967, the doctor founded St. Christopher's Hospice in South London. In 1969, one of the attendees who had heard her American address, Florence Wald (Dean of Yale School of Nursing), interned for one month working with her at St. Christopher’s, eventually to bring the philosophy of modern hospice treatment back to the States where, in 1971, Wald founded Hospice, Inc. Saunders’ work continued to propagate. In 1975, Alive Hospice of Nashville, Tennessee, opened its doors as another pioneer program in US hospice. By 1977, the National Hospice Organization had taken root with then-president Ann G. Blues formulating hospice benchmarks by 1979. Concurrently, in 1965, Zurich-born Swiss-American psychiatrist Elisabeth Kübler-Ross also began to develop and disseminate her own principles on the social and psychological response to terminal illness (which she perceived lacking in the standard American hospitals she knew intimately around Chicago, Illinois). In 1969, Kübler-Ross’ tome On Death and Dying hit the best-seller list and brought needed attention within the medical community to the plight of the dying. Suddenly (though it had taken centuries), thanatology —the interdisciplinary study of death and its effects— and advocacy for kindly hospice care had come to society’s forefront to consider manifold care at one’s end of life.
Concerning further progress in the United States, Wald (circa 1974) opened a hospice center —one of the US’s first—in New Haven, Connecticut. In 1985, as the Detroit Receiving Hospital in Michigan, the Wayne State University School of Medicine unveiled America’s first palliative care and consultation program operating within a trauma hospital setting. Combining both palliative care for pain relief and hospice services for emotional comfort, the non-profit Cleveland Clinic Cancer Center in Ohio opened under the direction of Declan Walsh (later named The Harry R. Horvitz Center for Palliative Medicine). The World Health Organization (WHO) selected it as an international prototype for integrated cancer-hospice services (accredited by the European Society of Medical Oncology).
Global Reach
Later, in 1984, executive director the US National Hospice Organization, Dr. Josefina Magno of the American Academy of Hospice and Palliative Medicine, also in Chicago, Illinois, established the International Hospice Institute. History credits Dr. Magno —of Filipino descent, whose husband, a sister, and a son each died from cancer— as being one of the first advocates to connect a network of hospices in the United States. In 1996, under its educational auspices, the organization assumed the new name of the International Hospice Institute and College, and later became the International Association for Hospice and Palliative Care (IAHPC). Her, and the Association’s, advocacy promoted the principle that each nation need develop its own palliative care prototype to employ its own national resources and within its specific environment. In 2003, the British Medical Journal credits Dr. Derek Doyle (another founding member of the IAHPC) with reporting the success of the association’s mission. “More than 8000 hospice and palliative services (were) established in more than 100 countries,” under Dr. Mango’s oversight.
Globally, the network help develop international Standards for Palliative and Hospice Care that have been adopted worldwide, specifically within programs in North America (Canada and the United States); Eastern, Western, and Northern Europe (United Kingdom, Hungary, Italy, Moldova, Norway, Poland, Romania, Spain, and Switzerland), Asia (Israel and Japan), and Australia. In 2006, the National Hospice and Palliative Care Organization (NHPCO, based in the US) and Help the Hospices (based in the United Kingdom) collaborated on an independent survey of international practices in the field of palliative care services. The joint research noted that only 1.5 in 10 nations provided comprehensive palliative treatment within its primary health care institutions. Furthermore, 3.5 in 10 nations provided only restricted forms of palliative care treatment. Through 2009, while the terms describing palliative care as ‘hospice’ on the international scene either varied or even lacked altogether, still some 10,000 treatment services worldwide had been made available to dying patients.
In 2018, End Game –an Academy Award-nominated film from Netflix about terminal hospice patients treated at San Francisco’s Zen Hospice Project and local hospitals— highlighted the of palliative work BJ Miller, M.D. and other professional hospice care-givers and physicians. Shoshana R. Ungerleider, a longtime hospice and palliative care activist executive produced the documentary short.
Resistance
Needless to say, that throughout history, the hospice movement has endured opposition, both from medical professionals entrenched in one manner of administering care and from social structures prone to obscure the death process. The concept of open communication, specifically in which the topic revolves around one’s demise, remains foreign to many clinicians and cultures, as well as to a wider populace including even the patients themselves. Hospice care has met resistance sometimes due to a discomfort with familiarizing oneself with unknown or untried medical interventions. Other times, the hospice movement encounters a lack of sympathy due to callous bedside manner by professionals distancing themselves from the terminally ill patient. Regardless of the forbearance, hospice care continues to expand and evolve worldwide (in variation) as select care-givers –in addition to those facing end of life— reach for more compassionate, empathetic, and comforting treatment options.
US Perspectives
What originally began as a grass-roots initiative to better the remaining days of terminally ill people in the United States has since developed into an important service within the health care field. Those patients who are alone, secluded, confined to facilities, with or without family, and dying continue to find compassion through hospice care. Roughly, 1.6 million people (in 2010) benefited from hospice treatment and services. In fact, not only is hospice care the rare exception in US Medicare benefits that comprehensively covers prescription medication, home equipment, and 24/7 professional care, among other costs, but it also provides access to support for family members following a beloved’s demise. The large majority of private insurance programs, as well as US Medicaid, cover the costs for specialized hospice care. Although such treatment is typically provided in the home, where the patient is the most comfortable and at ease during end of life, hospice care also extends to patients in residences, nursing homes, aid facilities, VA programs, hospitals and even prisons. Where possible, creating a home-like environment.
In 1982 (and voted permanent in 1986), Congress helped originate the Medicare Hospice Benefit discussed above. Under the administration of President Clinton, in 1993, guaranteed hospice benefit became a routine covered service of health care provisions. By 2014, the racial demographic of hospice beneficiaries started to expand, representing a 32% and 21% increase (respectively) among Asian and Hispanic patients. The trend to covered care continued to spread. By 2017, almost 1.5 million Medicare recipients had accessed hospice provisions for at least one day or more (representing a 4.5% increase over 2016’s beneficiaries, year-to-date). Over these decades, hospices services became entrenched as standard, though relatively new, health care.
During the late 20th Century in the United States, additional noteworthy hospital-based palliative care programs opened their doors in Wisconsin (1993, Palliative Care Program at the Medical College of Wisconsin); and, two in New York City (1996, Memorial Sloan-Kettering Cancer Center’s Pain and Palliative Care Service; 1997, Mount Sinai School of Medicine’s Lilian and Benjamin Hertzberg Palliative Care Institute). These facilities helped usher in the acceptance of hospice programs in leading hospitals. This list, though, does not represent the entirety of the movement among professional facilities, but only some of the work of break-through organizations offering palliative hospice.
For additional information please contact Dr. Max Diamond at MDiamond@RegalMed.com or Lior Matian at Lior@SupportiveHospiceCare.com
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