The History of Hospice and Palliative

Care

lthough individuals and cultures since prehistoric times have been

A consistently preoccupied with circumstances after death, devotion
to the care of the dying has only recently gained consistent
attention in the human consciousness. Religious institutions were the
main providers of end-of-life care for centuries, and the recipients of that
care were mainly those with limited resources and no family members.
The progression of hospice and palliative care from its unorganized
origins to its current complex, interdisciplinary approach mirrors the
development of health care in society over the past thousand years.

The Roots of End-of-Life Care

The first houses dedicated to the care of the dying were set up to manage
care for travelers and crusaders who became ill. Not surprisingly, the term
“hospice” therefore has its linguistic origins in the Latin word Hospes, a
term that referred to either a traveling guest or a traveler’s host.1
Crusaders in the 11th century are believed to have been the first group to
have set up homes for the incurably ill.1 The Knights Hospitaller opened
a hospice-type facility in the 14th century to both provide refuge for
travelers and care for the terminally ill.2 The reliance on specific religious
orders to provide terminal care meant that the further development of the
hospice concept was beholden to the health and survival of those specific
orders. So, although the number of religiously administered hospices
increased in the Middle Ages, their existence diminished for the 3 to 4
centuries after those religious branches withered in their influence.1
The further development of hospice and palliative care in the 18th and
19th centuries saw continued ties to religious organizations. However,
there was less emphasis on the care of travelers and more of a trend
toward the management of patients with 1 or 2 diagnoses in common. The
Irish Religious Sisters of Charity opened Our Lady’s Hospice in Dublin,
Ireland, in 1879. The facility came to care for thousands of patients, most

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of whom were dying from tuberculosis or cancer.3,4 The Sisters of Charity
developed several similar hospices in other countries, and it was their St
Joseph’s Hospice in London where the woman attributed with developing
the modern hospice concept first honed her craft.3
The Development of Modern Hospice
Cicely Saunders was a 20th century British nurse and social worker who
decided early in her career that she wanted to devote her professional life
to the care of terminally ill patients.4,5 She initially volunteered in the St
Luke’s Home for the Dying Poor in England. Her experiences led her to
obtain a medical degree in 1957 to give her an opportunity to achieve her
palliative care goals. In the coming decades, Dr Saunders played the
predominant role in forming the tenets used in hospices worldwide,
including (1) the concept of “total pain,” including physical, spiritual, and
psychological discomfort; (2) the proper use of opioids for patients with
physical pain; and (3) attention to the needs of family members and
friends who provide care for the dying.6 She is widely recognized as
having developed the first modern hospice, St Christopher’s, in London in
1967. That hospice was unique in its care for patients with all diagnoses,
with any religious affiliation, and of any social class.
Saunders first introduced the main tenets for specialized care of dying
patients to the USA during a lecture delivered at Yale University in 1963.
She detailed the holistic care of these patients as well as the potential for
successful, aggressive symptom control in their last days of life. That
lecture, along with other contemporary forces, began the development of
hospice and palliative medicine in the USA.7,8 Further attention was
drawn to the issue with the publication in 1969 of a book entitled On
Death and Dying, by Elisabeth Kubler-Ross.9,10 The book argued for the
existence of 5 stages that terminal patients pass through while progressing
through their end-of-life journey. Kubler-Ross espoused her recommen-
dations for final care at home all the way to her testimony before the US
Senate in 1972. Although the worldwide acceptance of the hospice
movement gained momentum throughout the 1970s, it was the USA
political discussions during that era that produced the change of the
discipline from a volunteer-led movement to full-fledged medical spe-
cialty.
Formation of the Medicare Hospice Benefit
The first bill suggesting that hospice services be paid for by Medicare
was introduced to and rejected by the USA Congress in 1974. Still, a US
government task force determined in 1978 that hospice was a viable
Curr Probl Cancer, November/December 2011 305
TABLE 1. Services Covered by the Medicare Hospice Benefit
● Nursing care: to provide intermittent (usually 1-3 times/week) assessment, support,
skilled services, treatments, and case management services
● Social work: supportive counseling, practical aspects of care (other community
services), and planning (health care surrogates, advance directives)
● Counseling services: including chaplaincy
● Home health aid and homemaker services
● Speech therapy, nutrition, PT, and OT services
● Bereavement support: family counseling after the death
● Hospice medical director: including POC oversight
● Medications and supplies: for management and palliation of the advanced illness
● Durable medical equipment, ie, hospital bed, commode, wheelchair
● Short-term general inpatient care: for problems that cannot be managed at home, such
as pain, dyspnea, delirium, acute skilled needs
● Short-term respite care: to permit family caregivers to take a break
● Continuous care: at home for short episodes of acute need

concept that could both improve end-of-life care and decrease overall
Medicare expenses. A subsequent demonstration program, including 26
hospice programs across the country, measured the value of this approach
to end-of-life care, and the success of that pilot program led Congress to
create a hospice benefit in 1982.11 The Medicare Hospice Benefit
provided a per diem payment for the total care of patients who are
certified by 2 physicians to die within 6 months if their illness follows its
natural course, and, although refinements have been made in the inter-
vening years, that initial legislation spells out the care of those patients to
this day (Table 1). Under the Medicare Hospice Benefit, a patient signs
off their ability to be hospitalized and enrolls in the Medicare Hospice
Benefit with direct care provided by a Medicare-certified hospice agency.
Patients who live longer than 6 months are not dismissed from hospice,
but they must be recertified as being appropriate for the service.
The number of hospice programs has increased from a single facility in
1974 to over 5000 in the year 2009.12 Most patients who elect hospice
admission are cared for at home, with the percentage of US patients dying
at home rather than in a hospital increasing dramatically since its nadir in
the 1970s. More than one million patients die in hospice care each year,
and the number of hospice volunteers numbers more than one-half million
nationally.13 Recent research shows that admission to hospice or an early
palliative care consult can improve quality of life, decrease health care
costs, and even lengthen life in some circumstances.14,15 As such, hospice
care is a subset of the larger approach to symptom management known as
“palliative care.”
306 Curr Probl Cancer, November/December 2011
Palliative Care as a Medical Specialty
The term palliative care gains its origins from the Latin word palliaire,
which means “to cloak.” A Canadian doctor named Balfour Mound has
been given credit for first using the term “palliative care” in 1974 in the
setting of treatment given with the goal of symptom relief.16,17 The
formal World Health Organization description is that palliative care is “an
approach that improves the quality of life of patients and their families
facing the problems associated with life-threatening illness, through the
prevention and relief of suffering by means of early identification and
impeccable assessment and treatment of pain and other problems,
physical, psychosocial and spiritual.”18 This relief may include mitigating
the effects of a primary disease state and dealing with treatment-related
side effects. Palliative care is a multidisciplinary specialty that is
delivered to all patients with a complex, chronic, or life-threatening
illness. In direct contradistinction to hospice care in the USA, palliative
care may be given concurrently with treatments delivered with curative
intent.
Although the first hospital-based palliative care program was formed in
the USA in the late 1980s, currently most USA hospitals have come to
offer palliative care services.19 During that time, the hospice and
palliative medicine specialty came to offer board certification to qualified
USA physicians, first through the American Board of Hospice and
Palliative Medicine and more recently by the American Board of Medical
Specialties. Proof of the multidisciplinary nature of the specialty is that 11
other medical specialties serve as cosponsors on this board. Beginning in
2012, those who sit for the certification examination will be required to
have completed an accredited fellowship.20

Current Worldwide Hospice and Palliative Care

Efforts
The worldwide adoption of effective hospice and palliative care
measures has faced an array of challenges, many of which remain
pertinent even today. Those factors have included physician disinterest in
dying patients, cultural taboos against openly discussing death, limited
resources, heterogeneous access to health care, suspicion about medical
methodologies across borders, and simple resistance to change. Still, the
need for quality end-of-life care has driven the ongoing increases in
worldwide attention to these matters.
The International Hospice Institute was formed in 1984, and it eventu-
ally became what is now known as the International Association for
Curr Probl Cancer, November/December 2011 307
Hospice and Palliative Care (IAHPC). The IAHPC strives to aid coun-
tries’ efforts to fashion end-of-life care that addresses their specific needs,
respects their customs, and pays heed to their available resources.21
Although many developing countries lack sufficient resources to develop
formal hospice and palliative care programs, the IAHPC estimates that
through their efforts they have fostered the formation of more than 8000
such services in over 100 countries. Although estimates suggest that there
are now more than 10,000 worldwide hospice and palliative services,
most countries in the world do not have highly developed and compre-
hensive services.22
Future Directions
The need for hospice and palliative care services will increase dramat-
ically over the next 20 to 30 years. Developed countries are facing the
aging of their populations, as is evidenced by the 78 million American
“Baby Boomers,” who have just begun entering the phase of life
associated with the peak incidence of cancer, heart disease, and other
life-threatening and chronic illnesses. By contrast, continued improve-
ments in the control of trauma and infectious diseases in developing
countries will allow greater proportions of those populations to live to
face more chronic illnesses that require long-term palliative care along
with acute care. The demand for increased quantity and quality of
end-of-life care will require massive increases in research, education, and
governmental attention in countries around the world.

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