2. Hospice History and Philosophy
A History of Hospice Palliative Care
International Hospice
Although the hospice movement claims its origins in the 11th Century work of the Sovereign Order
of St. John of Jerusalem during the Crusades, the modern hospice movement has its roots in
nineteenth century France, Ireland and the USA. Some milestones include:
1843: A home for the dying was opened in Paris by L’Association des Dames du Calvaire leading to the
foundation of six other establishments for the care of the dying between 1874, in Paris and
1899, in New York.
1879: The Irish Sisters of Charity opened Our Lady’s Hospice for the Dying in Dublin followed by
others in Australia, England and Scotland, all of which still exist today and are run by the Order
as modern palliative-care units.
1900: The Dominican Sisters of Hawthorne established St Rose’s Hospice in Lower Manhattan
and then another in New York, followed by others in Philadelphia, Fall River, Atlanta, St
Paul and Cleveland.
Although not connected with each other, the principals of these organizations shared a concern for the
care of the dying, and in particular the dying poor. Although they were not places that offered
sophisticated medical or nursing care, these early facilities created some of the pre-conditions for the
development of modern hospices which gathered momentum after the Second World War.
3. Hospice History and Philosophy
The Twentieth Century
By the mid-twentieth century some important changes were occurring in western medicine and
healthcare. Specialization was advancing rapidly; new treatments were proliferating; and there was an
increasing emphasis on cure and rehabilitation. At the same time death in the hospital rather than at home
was becoming the norm; and the dying patient or ‘hopeless case’ was often viewed as a failure of medical
practice. Concerns about improving care at the end of life began to surface more widely in the 1950s.
In the UK, attention focused on the medical “neglect” of the dying; whereas in the United States a reaction
to the medicalization of death began to take root. A new view of dying began to emerge which helped
refine ideas about the dying process and explore the extent to which patients should and did know about
their terminal condition. An active rather than a passive approach to the care of the dying was promoted.
Within this, there emerged a determination to find new and imaginative ways to continue caring up
to the end of life - and beyond it, in the care of the bereaved.
Dame Cicely Saunders founded St Christopher’s Hospice, in South London, in 1967, and it quickly became a
source of inspiration to others. As the first “modern” hospice, it sought to combine three key principles:
excellent clinical care, education, and research. It therefore differed significantly from those homes for
the dying which had preceded it and sought to establish itself as a centre of excellence in a new
field of care. Its success was phenomenal and it soon became the stimulus for an expansive phase of
hospice development, not only in Britain, but also around the world.
“You matter because you are you. You matter to the last moment of your life,
and we will do all we can, not only to help you die peacefully, but also to live until you die.”
— Dame Cicely Saunders
4. Hospice History and Philosophy
The Twentieth Century
From the outset, ideas developed at St Christopher’s were applied differently in other settings. Within a
decade it was accepted that the principles of hospice care could be practiced in many settings: in
specialist in-patient units, but also in home-care and day-care services. Hospital units and support
teams were established that brought the new thinking about dying into the heartland of acute medicine.
The work of Elizabeth Kübler-Ross in challenging the medical profession to change its view of dying
patients brought about great change and advanced many important concepts such as living wills, home
health care, and helping patients to die with dignity and respect. Her bestselling first book, On Death
and Dying, 1969, made her an internationally-renowned author.
Even today, her trail-blazing book is required reading in most major medical, nursing, and psychology
programs. A 1969 Life Magazine article outlining her work gave further mainstream credibility and
awareness to this new way of dealing with dying patients, although her conclusions were quite
revolutionary at the time. The “five psychological stages of dying”
(denial, anger, bargaining, depression and finally acceptance) outlined in her book became accepted
as common knowledge throughout the world. “She was always very proud that her work helped to
bring the hospice movement into the mainstream in the United States.”
“Those who have the strength and the love to sit with a dying patient in the silence that goes
beyond words will know that this moment is neither frightening nor painful, but a peaceful
cessation of the functioning of the body. Watching a peaceful death of a human being
reminds us of a falling star; one of the million lights in a vast sky that flares up for a brief
moment only to disappear into the endless night forever.”
— Elisabeth Kubler-Ross
5. Hospice History and Philosophy
Hospice in America
A few years before Dr. Saunders opened St. Christopher’s, she delivered a lecture at Yale University in New
Haven about her ideas. That lecture helped launch hospice care in America, for among those in the
audience was Florence Wald, then dean of Yale’s School of Nursing. According to Wald, Dame Cicely's
words changed the direction of her life. Wald left the deanship in 1968 and traveled to London where she
worked at St. Christopher’s hospice to learn its approach to patient care and to study the hospice's
organization and management. Six years later, in 1974, with the help of two physicians, Florence Wald
founded Connecticut Hospice in Branford, on the outskirts of New Haven. As the first hospice in the United
States, it was also first to offer home care and today, throughout the country, over 90% of hospice care is
delivered at home.
Since the mid-1970s when hospice care was introduced in America as the most innovative, comprehensive
and humane care available for people with limited life expectancies, demand for hospice care has increased
every year.
One of the most important developments in expanding access to quality end-of-life care was the passage of
the Medicare Hospice Benefit in 1982, through which hospices receive federal funds for the care they give
to eligible patients. With this legislation, the federal government essentially declared that hospice care was
so important in relieving suffering and in bringing about a peaceful and meaningful closure to life, that
every citizen was entitled to it, regardless of ability to pay. Although federal reimbursements for providing
hospice care have fallen behind the real costs of this care, this benefit has nevertheless supported the
growth of quality end-of-life care for all Americans.
6. Hospice History and Philosophy
Future Development
Within the professional lifetime of the founders of the modern hospice movement, a remarkable
proliferation has occurred. At the same time, the definition of hospice and palliative care has come into
sharper focus. Recognition of the specialty of palliative medicine first occurred in the UK, in 1987, and was
seen by some as a turning point in hospice history. It was part of a wider shift away from ‘terminal’ and
‘hospice’ care towards the concept of palliative care. As hospice and palliative care continues to evolve, the
hope remains that the benefits of a model of care previously available to just a few people at the end of life
will, in time, be extended to all who need it - regardless of diagnosis, stage of disease, social situation or
means.
The need for hospice services will continue to rise due to the growing aging population and the rising
health care costs. More importantly, medical professionals, as well as the general public are choosing
hospice over other forms of health care delivery because of its holistic, patient-family, in-home centered
philosophy.
7. Hospice History and Philosophy
Longleaf Hospice Mission:
To surround patients and their
families with compassionate
care that enables them to
embrace the end of life with
dignity, courage, and peace.
8. Hospice History and Philosophy
• Longleaf Hospice Guiding Principles
– Our word is our bond.
– Everyone will be treated with respect.
– We will be open, honest and constant in all
communications.
– We will go the extra mile for every customer
experience to be positive.
9. Hospice History and Philosophy
• Longleaf Hospice Philosophy
– The goal at Longleaf Hospice is to help patients maintain an
alert, pain-free life and to manage other symptoms so that their final
days are spent with dignity and quality, surrounded by their loved ones.
• Longleaf Hospice believes that hospice care isn’t about giving up — it’s about gaining
control of your life again. We promote a philosophy of care that integrates the
physical, spiritual, and emotional needs of patients and their families.
• The team of caregivers at Longleaf Hospice is dedicated to people live as fully and
comfortably as possible.
– At Longleaf Hospice, we will:
• Develop an individualized care plan based on the needs of the patient and family.
• Provide hospice services where the patient lives.
• Work as a team with the family and health care providers.
• Provide pain management appropriate for each individual patient.
• Tailor care to meet the special needs and requests from patient and family.
10. Hospice History and Philosophy
• Care at End of Life
– Patients are often confronted with physical and emotional
problems when at the end of life. In addition, family members
experience numerous physical, emotional, and economic
problems as they face the eventual loss of their loved one.
These problems can extend into the bereavement period and
can be further exacerbated if the family members are not
receiving adequate support.
– It is important to provide patients with adequate relief of
physical and psychosocial symptoms as well as help families and
loved ones cope with the impending loss of their family
member. This must be done while maintaining dignity of the
patient and family.
11. Hospice History and Philosophy
• Ethics at End of Life
– Ethics is “ the science that deals with the principles of right and wrong, good and bad:
it governs our relationships with others and is based on personal beliefs and values.”
• Ethical dilemmas often occur during end of life. Some of the end of life issues
are:
– Assisted suicide
– End of lie decisions
– Pain management
– Palliative care
– Spiritual care
– Truth telling
– Scientific integrity
– Health care reform and access to care
– Advanced directives
– Effective symptom management
– Confidentially
• Another ethical issue comes when families have difficulty letting go. This is es
pecially true in situations where family members may block or interfere with
analgesic administration.
12. Hospice History and Philosophy
• Nearly 50% of all patients going through the dying process spend most
of their time in moderate to severe pain.
• Most Americans would prefer to die in their own home, yet most die in
institutions.
• Nearly 50% of dying patients in the United States experience multiple
physical and emotional symptoms that go untreated /under-treated.
• These patients also experience decreased quality of life, often due to
symptoms such as:
– Pain
– Dyspnea
– Depression
– Anxiety
– Delirium
– Fatigue/Weakness
– Restlessness/Agitation
– Gastrointestinal Disturbances
15. Hospice History and Philosophy
• Barriers to Quality End of Life Care
– Lack of knowledge of health care professionals can significantly impact how well
patients & their families will have their physical, psychological, social & spiritual needs
managed through the dying process.
– Aging population - approximately 70 million individuals reaching age of 65 by the year
2030 (Administration on Aging 2000). Increased life expectancy means increase in
number of elderly having to cope with concurrent chronic illness and their associated
physical, social and spiritual difficulties.
– Delayed access – there is a need for more timely referrals by healthcare professionals to
hospice & palliative care in order for patients and their families to reap the full benefit of
these services.
– Realities of life limiting diseases - failure to acknowledge that the limits of medicine may
lead to futile care. Use of aggressive curative treatments can prolong the dying process
and contribute to physical and emotional distress of the patient.
– Rules and regulations - issues regarding access to care, insurance coverage and the
potential need to hire a caregiver from outside the family which can contribute to
financial barriers to care.
16. Hospice History and Philosophy
Physical
Well-being
• Quality of Life:
Each patient must define quality
of life for his/herself based on
his /her life Concept of Psychosocial
Suffering Well-being
experiences, values, and beliefs.
Healthcare must respond to the
Quality
psychological and spiritual needs
of patients and families coping
of Life
with life-threatening illnesses
throughout the illness and end
Issues
of life period including the time
of death and bereavement
periods to avoid increasing their
suffering and isolation. Spiritual Social
Well-being Well-being
17. Hospice History and Philosophy
• Quality of Life Issues
– Physical Well-being: The physical well-being of the patient is affected by various symptoms due to organic
and metabolic changes, disease progression and debilitation, such as functional ability, sleep, rest, and
appetite. Pain is one of the primary concerns of the terminally ill and their families/caregivers. Family
members can develop/have physical needs that impact their ability to care for the patient, as well as their
ability to care for themselves. Physical symptoms can manifest during the bereavement period as well.
– Psychosocial Well-being: Patients experience a wide range of emotions, psychological issues/concerns, and
losses (such as body image and role/relationship changes) throughout their terminal illness journey and at
the end of life. Communication and support are important components in the management of the
psychological domain.
– Social Well–being: The social structure and integrity of the family may be threatened. Becoming a burden
to one’s family is often a concern to a patient. Expressions of sexuality may change between partners as
illness progresses. Children may show their emotional concerns by isolating themselves or by acting out in
school or at home. Financial concerns may arise due to loss of income. Friends and extended family stop
visiting, creating social isolation for patient and family.
– Spiritual Well-being: Religion gives expression to a person’s regarding suffering, illness, pain and death.
Skillful attention to maintaining a person’s unique meaning of hope can enhance quality of life and help
make the dying process more meaningful to the patient and family.
– Concept of Suffering: Suffering is a highly personal experience and depends on the significance or personal
meaning of events and losses. It is a state of severe distress that threatens the intactness of the individual.
Suffering may be associated with an event(s) such as fear of physical distress, issues regarding family
relationships and other roles, perceptions of self, witnessing another’s distress, an inappropriate focus on
cure.
18. Hospice History and Philosophy
• Palliative Care & Hospice During End-of-Life
– An overview of the philosophy of hospice and palliative care is that dying is a
unique experience and part of the normal life cycle. Support and care is
provided using an interdisciplinary team approach with the focus on
enhancing the quality of life for persons facing a life-threatening illness across
settings.
– Palliative care can and should co-exist with curative care. Introduction of
palliative care earlier in the course of an illness makes it possible to recognize
when subtle shifts occur and allows patients, families and professionals to
adapt goals accordingly.
– Goals of care change often throughout the course of illness by integrating
physical, psychological, social and spiritual aspects of care. Frequent
reassessment and clarification of goals, is needed by the interdisciplinary
team, the patient and family.
– In many healthcare settings, during clinical rotations, students have
opportunities to work with patients and families experiencing the dying
process.
19. Hospice History and Philosophy
• Palliative Care
“An approach that improves the quality of life of patients and their
families, facing the problems associated with life-threatening
illness, through them prevention and relief from suffering, by means
of early identification, impeccable assessment, treatment of pain
and other problems - physical, psychosocial, and spiritual.”
World Health Organization, 2002; Sepulveda et al., 2002
• Eligibility for Initiation of Palliative Care:
– Palliative care is appropriate and can be
implemented at any time during the illness
experience.
20. Hospice History and Philosophy
• Principles of Palliative Care
– The patient and family (as defined by the patient) are a
unit of care.
– No single discipline can fully address the many concerns
that patients and families have during end of life, therefore
utilizing the expertise and combined efforts of the
interdisciplinary team members is the key to providing
holistic, comprehensive care.
– The patient and family are at the center of the team.
– Professional caregivers should support and be an advocate
for the needs of the patient and his family so that death is
a more meaningful experience for them.
21. Hospice History and Philosophy
• Hospice
Hospice care is the support and care for persons in the final phases of an incurable
disease so that they may live as fully and comfortably as possible (NHPCO, 2000).
Hospice also supports the surviving family through the dying and bereavement
process (Egan & Labyak, 2001). Hospice provides comprehensive palliative, medical
and supportive services across a variety of settings and is based on the understanding
that dying is a part of the normal life cycle. Care can be provided in the home, in
residential facilities, long-term care facilities and other settings (i.e. prisons).
• Eligibility for Hospice:
– Enrollment is limited to those expected to die within six months.
– The Medicare Hospice benefit has currently expanded its hospice service options so that
patients/families can receive end of life care long before the last six months of life to better
meet the needs of patients dying from chronic illnesses. in additional option that has been
made available to patients (and their families) who are actively in the dying process or have
been determined as terminal is that they can be designated as an inpatient hospice.
– An additional option that has been made available to patients (and their families) who
are actively in the dying process or have been determined as terminal is that they can be
designated as an inpatient hospice.
22. Hospice History and Philosophy
• Principles of Hospice Care
– The Family is the unit of care.
– Care is provided primarily in the home, but can also be
provided in free- standing hospice facilities, hospitals, and
nursing homes.
– Care involves an interdisciplinary approach to expert
medical and nursing care, pain management, and
emotional and spiritual support.
– Care is provided primarily in the home, but can also be
provided in free-standing hospice facilities, hospitals, and
nursing homes.
– Patient has the right to die pain-free and with dignity.
– Loved ones will receive necessary support.
– Focus is on caring, not curing.
23. Hospice History and Philosophy
• Advance Directive (aka “Living Will”)
– An Advance Directive is a document that lets patients state their wishes about
medical care in the event that they develop a terminal or irreversible
conditions and can no longer make their own medical decisions.
• An Advance Directive (Living Will) becomes effective when
1. The patient’s s physician certifies in writing that the patient has a terminal or
irreversible condition, and
2. After the patient’s physician writes a “do not resuscitate (DNR) order
specifying the patients wishes to withhold medical care.
3. The patient may revoke the Directive at any time.
• Hospitals are required by Medicare Conditions of Participation and JCAHO to inquire about
Advanced Directive status upon the patient’s admission and to instruct the patient about
his/her option of having an Advance Directive if so desired. If the patient has a Directive, the
hospital is required to make it part of the patient’s s medical record. However, hospitals are
not required to make the patient create an Advance Directive or Power of Attorney for
medical care.
24. Hospice History and Philosophy
• Other Laws and Directives related to End of Life:
– Federal Patient Self Determination Act is a law that allows
for patients to make choices about what is done to their
bodies while they are receiving medical care through the
development of the Advanced Directive (Living Will).
– Georgia Medical Power of Attorney lets the patient name
someone to make decisions about his/her medical care-
including decisions about life support-if he/she can no
longer speak for him/herself.
• This person does not necessarily have to be a family member.
• This person may be a Court Appointed Guardian to make decisions for an
individual who is deemed incapable of making an informed decision.
25. Hospice History and Philosophy
You have successfully
completed this
learning module.
Congratulations!
Kirsten Black, Volunteer Coordinator
kirsten.black@longleafhospice.com — (770) 939-9179
