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This preview course will provide
recommended reading/viewing
material regarding end of life care.
Take the certificate course at
volunteertrainingonline.com/courses
Learn the history and
philosophy of hospice, how
it is funded, what it is and
what it is not.
Is hospice right for you?
Are you right for hospice?
Questions or Comments: hospicevolunteertraining@gmail.com
1997: Congress passes legislation barring taxpayer dollars from financing physician-assisted suicide. The US Supreme Court rules that mentally competent terminally ill people do not have a constitutional right to physician-assisted suicide, leaving the issue up to the states. Oregon voters affirm the right to physician-assisted suicide by passing for the second time its “Death with Dignity Act.”
1997: The growing end-of-life movement focuses national attention on quality of life at the end of life as well as the need for increased public awareness and physician education. The hospice philosophy and concept of care are central to models for palliative and end-of-life care.
1998: Hospices nationwide report rapidly declining average and median lengths of stay. The percentage of hospice non-cancer admissions decreases dramatically, reflecting the problems associated with determining a six-month prognosis for these patients.
1998: An ORT report on hospice states, “Overall, the Medicare hospice program seems to be working as intended.” The OIG reveals that hospice will not be included in the 1999 work plan.
1999: The U.S. Postal Service issues the Hospice Care commemorative stamp in February.
1999: The Health Care Financing Administration (HCFA) releases the Hospice Cost Report. Medicare-certified hospice programs must file cost data for each fiscal year on or after April 1, 1999.
1999: The Office of Inspector General (OIG) releases the Draft Compliance Program Guidelines for the Hospice Industry.
2000: Hospice Rate Increase approved by Congress.
2008: New Medicare Conditions of Participation released.
"History of Hospice Care -." The National Hospice and Palliative Care Organization. 11 Feb. 2009 <http://www.nhpco.org/i4a/pages/index.cfm?pageid=3285>.
1994: HCFA sends a memorandum alerting the regions of problems regarding questionable certifications and recertification of terminal illnesses. This results in the first “focused medical review” for hospices and a wake-up call to the industry to improve its documentation and certification procedures or be denied payments.
1995: HCFA releases an expanded version of the Hospice Interpretive Guidelines, which provides much needed clarification of the Conditions of Participation (CoP). The Civilian Health and Medical Program of the Uniformed Services (CHAMPUS) Hospice Benefit is implemented June 1, 1995. It mirrors the Medicare Hospice Benefit in CoPs and reimbursement.
1995: The Office of Inspector General (OIG) announces the Operation Restore Trust (ORT), a special program to combat waste and abuse in Medicare and Medicaid in five targeted states—California, Florida, Illinois, New York, and Texas—would be expanded to include hospice.
1996: The Ninth U.S. Circuit Court of Appeals in San Francisco overrules a Washington State Law against physician-assisted suicide. The Second US Circuit Court of Appeals strikes down New York’s law against physician-assisted suicide. Both rulings are appealed to the US Supreme Court.
1996: Bills are introduced in the U.S. House of Representatives and the U.S. Senate to make technical changes and improvements to the Medicare Hospice Benefit. The hospice industry provides full support for both bills.
1996: Major grant-makers pour money into funding for research, program initiatives, public forums, and conferences to transform the culture of dying and improve care at the end of life.
1997: ORT (Operation Restore Trust) is extended and expanded to target all 50 states and additional types of health care providers.
1997: The Balanced Budget Act of 1997 (BBA 97) includes hospice provisions that, among other things, restructure the hospice benefit periods and remove physician services from the core services requirement. BBA 97 also reinstates a hospice cost report and reduces hospice payment updates by market basket minus one percentage point.
Philosophy
The following information is taken from the U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES Centers for Medicare & Medicaid Services 7500 Security Boulevard Baltimore, Maryland 21244-1850, CMS Publication No. 02154 Revised September 2008. Click the link at the bottom of this page to read the entire brochure.
Hospice is a program of care and support for the terminally ill that provides comfort and support services to help people live out the time they have remaining to the fullest extent possible.
Hospice care is provided by a specially trained team that cares for the "whole person," including his or her physical, emotional, social, and spiritual needs.
Hospice provides support to family members caring for a terminally ill person.
Hospice is generally given in the home.
Hospice services may include drugs, physical care, counseling, equipment, and supplies for the terminal and related condition(s).
Hospice isn’t only for people with cancer.
Hospice doesn’t shorten or prolong life.
Hospice focuses on comfort, not on curing an illness.
Hospice Philosophy Statement
Hospice provides support and care for persons in the last phases of an incurable disease so that they may live as fully and as comfortably as possible.
Hospice recognizes that the dying process is a part of the normal process of living and focuses on enhancing the quality of remaining life.
1979: The Health Care Financing Administration (HCFA) initiates demonstration programs at 26 hospices across the country to assess the cost effectiveness of hospice care and to help determine what a hospice is and what it should provide.
1980: The W.K. Kellogg Foundation awards a grant to the Joint Commission on Accreditation of Hospitals (JCAHO) to investigate the status of hospice and to develop standards for hospice accreditation.
1982: Congress includes a provision to create a Medicare hospice benefit in the Tax Equity and Fiscal Responsibility Act of 1982, with a 1986 sunset provision.
1984: JCAHO initiates hospice accreditation.
1986: The Medicare Hospice Benefit is made permanent by Congress and hospices are given a 10% increase in reimbursement rates. States are given the option of including hospice in their Medicaid programs. Hospice care is now available to terminally ill nursing home residents.
1989: The Government Accounting Office releases a study stating that only about
35% of eligible hospices are Medicare-certified. There are several reasons listed, one of which is the low payment rates HCFA had established for hospices.
1989: Congress gives hospices their first increase (20%) in reimbursement since
1986 and ties future increases to the annual increase in the hospital market basket through a provision contained in the Omnibus Budget Reconciliation Act of 1989.
1991: The Commission on the Future Structure of Veterans Health Care (Mission
Commission) releases a report recommending inclusion of hospice care in the veteran’s benefit package.
1992: Congress passes the Indian Health Care Improvement Act of 1992, calling for a hospice feasibility study.
1993: Hospice is included as a nationally guaranteed benefit under President Clinton’s health care reform proposal. Hospice is now an accepted part of the health care continuum.
Questions or Comments: hospicevolunteertraining@gmail.com
Hospice affirms life and neither hastens nor postpones death.
Hospice exists in the hope and belief that through appropriate care, and the promotion of a caring community sensitive to their needs that individuals and their families may be free to attain a degree of satisfaction in preparation for death.
Hospice recognizes that human growth and development can be a lifelong process.
Hospice seeks to preserve and promote the inherent potential for growth within individuals and families during the last phase of life.
Hospice offers palliative care for all individuals and their families without regard to age, gender, nationality, race, creed, sexual orientation, disability, diagnosis, availability of a primary caregiver, or ability to pay.
Hospice programs provide state-of-the-art palliative care and supportive services to individuals at the end of their lives, their family members and significant others, 24 hours a day, seven days a week, in both the home and facility-based care settings.
Physical, social, spiritual, and emotional care are provided by a clinically-directed interdisciplinary team consisting of patients and their families, professionals, and volunteers during the:
•Last stages of an illness;
•Dying process; and
•Bereavement period.
These statements were originally published in the 2000 edition of NHPCO’s Standards of Practice for Hospice Programs. The current edition of NHPCO’s Hospice Standards of Practice for Hospice Programs (2006) is written to reflect the ten components of Quality Partners. The statements from 2000 are still relevant and helpful to the field. Alexandria, Va
Questions or Comments: hospicevolunteertraining@gmail.com
Dr. Kubler-Ross is also known as the founder of the Death with Dignity movement.
She was able to increase awareness among the medical community as well as with families and patients about caring for the dying.
Dr. Kubler-Ross was instrumental in supporting the patient's right to determine their care, the need for effective pain management, and the holistic approach to care which involved finding peace emotionally and spiritually before death.
The book, which is not without controversy, that brings most attention to the philosophy of Dr. Kubler-Ross is entitled "On Death and Dying" and is still considered required reading for medical students.
Dr. Elisabeth Kübler-Ross passed away on August 24, 2004
Questions or Comments: hospicevolunteertraining@gmail.com
The following timeline gives a summary of events leading to hospice as we know it today. It was taken from The National Hospice and Palliative Care Organization's website.
1965: Florence Wald, then Dean of the Yale School of Nursing, invites Saunders to become a visiting faculty member of the school for the spring term.
1968: Wald takes a sabbatical from Yale to work at St. Christopher’s and learn all she can about hospice.
1969: A book based on more than 500 interviews with dying patients is published, entitled, On Death and Dying. Written by Dr. Elisabeth Kubler-Ross, it identifies the five stages through which many terminally ill patients progress. The book becomes an internationally known best seller. Within it, Kubler-Ross makes a plea for home care as opposed to treatment in an institutional setting and argues that patients should have a choice and the ability to participate in the decisions that affect their destiny.
1972: Kubler-Ross testifies at the first national hearings on the subject of death with dignity, which are conducted by the U.S. Senate Special Committee on Aging. In her testimony, Kubler-Ross states, “We live in a very particular death-denying society. We isolate both the dying and the old, and it serves a purpose. They are reminders of our own mortality. We should not institutionalize people. We can give families more help with home care and visiting nurses, giving the families and the patients the spiritual, emotional, and financial help in order to facilitate the final care at home.”
1974: The first hospice legislation is introduced by Senators Frank Church and Frank E. Moss to provide federal funds for hospice programs. The legislation is not enacted.
1978: A U.S. Department of Health, Education, and Welfare task force reports 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.”
Questions or Comments: hospicevolunteertraining@gmail.com
The staff led by Dame Saunders provided a holistic approach to comfort care, seeking clinical solutions in addition to providing emotional and spiritual support.
"A holistic approach, caring for a patient's physical, spiritual and psychological well being, marked a new beginning, not only for the care of the dying but for the practice of medicine as a whole."3
Dr. Elisabeth Kubler-Ross was also instrumental in the history of hospice in that she brought attention to the dying process and lessened the taboo of talking openly about end of life care. Dr. Kubler-Ross published her best-selling book "On Death and Dying" which became the basis for many grief and bereavement discussions on stages of grief.
Based on interviews with dying patients, she identified five stages of grief - denial, anger, depression, bargaining and acceptance. Time Magazine said of the book, "It has brought death out of the darkness." 4
The following is an excerpt from Kubler-Ross's book, "On Death and Dying" :
"Having been raised in a country in Europe, where science is not so advanced, where modern techniques have just started to find their way into medicine, and where people still live as they did in this country half a century ago, I may have had an opportunity to study apart of the evolution of mankind in a telescoped form."5
Dr. Kubler-Ross describes her country doctor attitudes and how small gestures of familiar surroundings such as foods, sights and sounds are a powerful medicine.
She affirms the importance of modern medications and infusions but insists that familiar comforts can fulfill psychological needs without the need for specialized clinicians. For instance, the IV fluids may be best replaced with a loving hand offering a sip of a favorite wine, or spoonful of comforting soup.
Questions or Comments: hospicevolunteertraining@gmail.com
People eventually kept their loved ones at home because the loved one might bring home infections that could strike an entire household. The care was better provided at home to keep the entire family safe from sickness thought to be brought back from the hospitals or other places of care.
During our modern times, hospitals have earned more recognition in treating patients appropriately for infectious diseases.
The patients who suffered from incurable diseases at one time remained in physical and often an emotional seclusion. The dying person was cared for in separate areas from those expected to survive and were seen as the "failure" of the medical system.
"The name hospice was first applied to the care of dying patients by Mme Jeanne Garnier who founded the Dames de Calaire in Lyon, France, in 1842. The name was next introduced by the Irish Sisters of Charity when they opened Our Lady's Hospice in Dublin in 1879 and St Joseph's Hospice in Hackney, London (1905)".2
"In 1967, Dame Cicely Saunders started St Christopher’s Hospice after being inspired by a patient, David Tasma, whom she met in 1948 when he was hospitalized with an inoperable cancer and she, a former nurse, was working as a medical social worker. The two had discussed how she might one day open a place that was better suited to pain control and preparing for death than a busy hospital ward. When he died, he bequeathed £500 and told Saunders, "I will be a window in your home,"
Since then her ideals have spread around the world, which gave her the reputation of being the founder of the modern hospice movement."2
St. Christopher's Hospice was the first modern hospice that was viewed as we see hospice today. It was dedicated through the work of Dame Cicely Saunders to the research and education of comfort and compassion for the dying person.
In the 1950's many people were dying in the hospital rather than at home. Fear of dying in pain, fear of cancer, and myths revolving around the use of painkillers, helped the St Christopher's Hospice focus on a specialized type of care for the dying and helped them become recognized as starting the modern day hospice.
The History of Hospice Care
At one time people lived in communities that supported the care of an individual with a life threatening illness.
The community group functioned to preserve their own lives should the death of one person prove to be from an illness that threatened the health of all others in the community.
The care was provided with the survival of the entire group in mind.
In Europe during the sixth and seventh centuries the monasteries were places that took in the sick and those who could not care for themselves.
The first nurses to work in these monasteries were wealthy women and widows.
Up until the seventeenth century, monasteries were places of refuge for sick and weary travelers. During the middle of the fourteenth century, pilgrimages were being made to holy sites and the hospices were another name for the people who showed kindness and these places became the place where many spent their last days comforted by the care of strangers.
"Hospice" is a Latin derivative of the word "hospes" which means to host a guest or stranger. A hospital was originally a house where pilgrims or travelers could stay or be entertained (synonym: hospice), so the host offering shelter to such people was said to be showing them hospitality. 1
It is interesting to read some history about the hospices of St. Bernard.
The famous hospices of the Alps offered rest to travelers, nourishment
and treatment for the hungry and the injured. The caring monks began
a vow of service at the hospice at the age of 18 and were to remain in
service for 15 years. The frigid temperatures and lack of oxygen rich
air often shortened the lifespan of the monks. Founded in 1049, the
hospice still functions today.
Questions or Comments: hospicevolunteertraining@gmail.com
The History of Hospice Care
At one time people lived in communities that supported the care of an individual with a life threatening illness.
The community group functioned to preserve their own lives should the death of one person prove to be from an illness that threatened the health of all others in the community.
The care was provided with the survival of the entire group in mind.
In Europe during the sixth and seventh centuries the monasteries were places that took in the sick and those who could not care for themselves.
The first nurses to work in these monasteries were wealthy women and widows.
Up until the seventeenth century, monasteries were places of refuge for sick and weary travelers. During the middle of the fourteenth century, pilgrimages were being made to holy sites and the hospices were another name for the people who showed kindness and these places became the place where many spent their last days comforted by the care of strangers.
"Hospice" is a Latin derivative of the word "hospes" which means to host a guest or stranger. A hospital was originally a house where pilgrims or travelers could stay or be entertained (synonym: hospice), so the host offering shelter to such people was said to be showing them hospitality. 1
It is interesting to read some history about the hospices of St. Bernard.
The famous hospices of the Alps offered rest to travelers, nourishment
and treatment for the hungry and the injured. The caring monks began
a vow of service at the hospice at the age of 18 and were to remain in
service for 15 years. The frigid temperatures and lack of oxygen rich
air often shortened the lifespan of the monks. Founded in 1049, the
hospice still functions today.
Questions or Comments: hospicevolunteertraining@gmail.com