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History of Hospice

1963

  • Dame Cicely Saunders introduces the idea of specialized care for the dying to the United States in a lecture at Yale University.

1965

  • Florence Wald, Dean of the Yale School of Nursing, invites Dame Cicely Saunders to become a visiting faculty member.

1967

  • Dame Cicely Saunders creates St. Christopher’s Hospice in the United Kingdom.

1968

  • Florence Wald takes a sabbatical from Yale to work at St. Christopher’s Hospice.

1969

  • On Death and Dying, written by Dr. Elisabeth Kubler-Ross, identifies the five stages through which many terminally ill patients progress.

1972

  • Elisabeth Kubler-Ross testifies at the first national hearings on the subject of death with dignity, conducted by the U.S. Senate Special Committee on Aging.

1974

  • Florence Wald, along with two pediatricians and a chaplain, founds Connecticut Hospice in Branford, Connecticut.
  • 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.

1975

  • The first National Symposium on Hospice Care is convened in New Haven, Connecticut.

1977

  • The second National Symposium on Hospice Care is convened in Boonton, New Jersey.
  • The third Symposium on Hospice Care is convened in Marin County, California.

1978

  • National Hospice Organization (NHO) is established to promote the concept of hospice care.
  • The first national NHO conference with 1000 participants is held in Washington, DC in October.
  • A U.S. Department of Health, Education, and Welfare task force reports that “the hospice movement …… 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.”

1979

  • The Health Care Financing Administration (HCFA) initiates demonstration programs at 26 hospices in 16 states to assess the cost effectiveness of hospice care and to help determine what a hospice is and what it should provide.
  • NHO issues the first “Standards of a Hospice Program of Care,” adopted by the NHO Board of Directors in February.
  • Cicely Saunders is made a Dame of the British Empire.
  • First hospice program established in Africa: Island Hospice, Harare, Zimbabwe.
  • Hospice is promoted through the film “Hospice: An Alternative Way of Care for the Dying.”

1980

  • Josefina Magno, MD, serves as the first full-time Executive Director/President of NHO. (1980 – 1982)
  • 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 accreditation.

1981

  • Logo is officially registered as the property of the National Hospice Organization.
  • The National Hospice Education Project is set up for the sole purpose of passing Medicare hospice legislation.
  • First AIDS case is defined.

1982

  • Congress includes a provision to create a Medicare hospice benefit.
  • Carl Akins serves as Executive Director/President of NHO. (1982 – 1983)
  • Addition of hospice benefits in many third-party payer insurance plans.  (1982 – 1985)
  • Proclamation of the first National Hospice Week in November.
  • NHO’s fifth annual meeting is held in Washington, DC.
  • NHO grows to twelve full-time paid staff.
  • NHO joins the Medicare Initiative.
  • NHO’s first television PSA is aired, featuring actor Jack Klugman.

1983

  • Initial Medicare Hospice Regulations are published in the Federal Register.  Regulations establish the four levels of care and outline the cost components of the routine home care rate.
  • JCAHO initiates hospice accreditation.
  • Human Immunodeficiency Virus (HIV) is isolated.
  • Louise Bracknell serves as Executive Director/President of NHO. (1983 – 1984)

1984

  • John J. Mahoney serves as Executive Director/President of NHO. (1984 – 1998)
  • Dr. William Lamers is recognized with the NHO Founder’s Award.
  • The Joint Commission Hospice Accreditation Program is implemented.
  • The human immunodeficiency virus (HIV) is recognized as the cause of HIV/AIDS, and research on zidovudine and other treatments gets underway.

1985

  • Dr. Josefina Magno, Dennis Rezendes, and Don Gaetz are recognized with the NHO Founders Award.
  • Consolidated Omnibus Budget Reconciliation Act of 1985 (“COBRA ‘85”)  does the following:
    • Medicare Hospice Benefit is made permanent.
    • States are given the option of including hospice in their Medicaid programs.
    • Permits payment of separate room and board rate for hospice patients residing in nursing facilities.

1986

  • Rev. Edward S. Dobihal, Jr. and Shirley Dobihal are recognized with the NHO Founder’s Award.
  • Ann Morgan Vickery is recognized with the NHO Woman of the Year award.
  • First NHO conference on management and interdisciplinary development is held.

1987

  • Florence Wald and Zach Morfogen are recognized with the NHO Founder’s Award.
  • First Anti-retroviral drug (AZT) is approved by the US FDA to treat people with HIV but is unavailable to most people in Africa.

1988

  • Ewart V. Thomas is recognized with the NHO Founder’s Award.
  • Initiation of CHAP (Community Health Accreditation Program) hospice accreditation program.
  • The tenth anniversary of NHO is celebrated at an annual meeting in Orlando.

1989

  • Reverend William Manger is recognized with the NHO Founder’s Award.
  • The Government Accounting Office releases a study stating that only about 35% of eligible hospices are Medicare-certified.
  • 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.

1990

  • Dr. Balfour Mount is recognized with the NHO Founder’s Award.
  • Passage of the Omnibus Reconciliation Act (OBRA 1990) establishes an unlimited fourth election period for the Medicare Hospice Benefit (final rule published 6/12/91).

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.
  • Dr. Derek Doyle is recognized with the NHO Founder’s Award.
  • Department of Defense authorizes coverage of hospice care in military hospitals or under CHAMPUS.
  • Patient Self Determination Act (PSDA) becomes effective and requires all health care providers, including hospices, to discuss advance care planning wishes with patients during the admission process.

1992

  • Congress passes the Indian Health Care Improvement Act of 1992, calling for a hospice feasibility study.
  • National Hospice Foundation (NHF) is established.
  • Dame Cicely Saunders and Dr. Sylvia Anne Lack are recognized with the NHO Founder’s Award.
  • FDA approval of Combined Therapy for HIV/AIDS.

1993

  • Hospice is included as a nationally guaranteed benefit under President Clinton’s health care reform proposal.
  • Dr. Elisabeth Kubler-Ross is recognized with the NHO Founder’s Award.
  • NHO coordinates the display of the AIDS quilt in Salt Lake City.
  • An estimated 9 million adults in sub-Saharan Africa are infected with HIV, with 1.7 million AIDS cases.

1994

  • HCFA sends a memorandum alerting the regions of problems regarding questionable certifications and recertifications of terminal illnesses, resulting in the first “focused medical review” for hospices.
  • Dr. Robert Twycross and Dr. William M. Lamers, Jr. are recognized with the NHO Founder’s Award.

1995

  • HCFA releases an expanded version of the Hospice Interpretive Guidelines, which provides much needed clarification of the Conditions of Participation.
  • The Civilian Health and Medical Program of the Uniformed Services (CHAMPUS) Hospice Benefit is implemented in June.
  • The Office of Inspector General announces Operation Restore Trust, a special program to combat waste and abuse in Medicare and Medicaid in five targeted states—California, Florida, Illinois, New York, and Texas—later expanded to include hospice.
  • Mary Taverna is recognized with the NHO Founders Award.

1996

  • Hugh Westbrook is recognized with the NHO Founders Award.
  • 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.
  • National Hospice Organization publishes Medical Guidelines for Determining Prognosis in Selected Non-Cancer Diseases.
  • Initiation of ACHC (Accreditation Commission for Home Care) hospice accreditation program.
  • Home Box Office and NHF create and air the documentary Letting Go:  A Hospice Journey, which gives viewers an intimate look at hospice care.
  • Hospice: A Photographic Inquiry – Organized by the Corcoran Gallery of Art and the National Hospice Foundation, explores the collaborative experience of hospice care through the eyes of artists. The Corcoran commissions five photographers to create new works about hospice for this exhibition. The show opens in Washington, DC at the Corcoran and then travels to 18 cities across the country.

1997

  • Operation Restore Trust is extended and expanded to target all 50 states and additional types of health care providers.
  • The Balanced Budget Act of 1997 (BBA 97) includes hospice provisions that restructure the hospice benefit periods and remove physician services from the employee-only requirement for the core services requirement.  BBA 97 also reinstates a hospice cost report and reduces hospice payment updates by market basket minus one percentage point.
  • 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.   
  • NHF conducts national research to learn more about America’s attitudes regarding end-of-life care. That Gallup survey finds that most adults would prefer care at home and would seek a hospice program if they had six months or less to live. The survey also reveals that most Americans do not realize that hospice care is available at home, and that costs are typically covered by Medicare or private health insurance.

1998

  • Karen Davie serves as Executive Director/President of NHO. (1998 – 2001)
  • 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.
  • NHO’s Medical Guidelines for Determining Prognosis in Selected Non-Cancer Diseases becomes policy through the development of Local Medical Review Policies by Fiscal Intermediaries.
  • An Operation Restore Trust report on hospice states, “Overall, the Medicare hospice program seems to be working as intended.”
  • Care Beyond Cure: Physician Education in End-of-Life Care is released by the Annenberg Center for Health Sciences and the National Hospice Foundation.
  • 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.
  • The Office of Inspector General releases the Draft Compliance Program Guidelines for the Hospice Industry.
  • The National Data Set Survey is initiated by NHO with the goal of creating standardized data collection nationwide.
  • Foundation for Hospices in Sub-Saharan Africa (FHSSA) is founded in New York State, with Bernice Catherine Harper as President, to mobilize a response to the sub-Saharan HIV/AIDS pandemic and support Africa’s hospice and palliative care programs’ ability to provide compassionate care.
  • AIDS becomes the number one cause of death in sub-Saharan Africa.

2000

  • The National Hospice Foundation launches a public service campaign of TV ads across the U.S.; one of these ads wins the prestigious ADDY Award.
  • U.S. Senate holds two major hearings on end-of-life care and discusses barriers to access under the Medicare hospice benefit.
  • National hospice community calls for more consistent Medicare surveys.
  • The Duke Institute on Care at the End of Life is established.
  • PBS series On Our Own Terms: Moyers on Dying in America is the focus of national education and engagement programs.
  • Research from the Department of Health and Human Services demonstrates findings that support the provision of hospice care for residents of skilled nursing facilities.
  • NHO changes its name to National Hospice and Palliative Care Organization (NHPCO).

2001

  • The passage of the Benefits Improvement and Protection Act of 2000 brings a five percent increase in the Medicare hospice reimbursement rates.
  • A Call for Change: Recommendations to Improve the Care of Children Living with Life-Threatening Conditions is released by the Children’s Project on Palliative/Hospice Services.
  • The Health Care Financing Administration (HCFA) becomes the Centers for Medicare and Medicaid Services (CMS).

2002

  • J. Donald Schumacher, PsyD, becomes Executive Director/President of NHPCO.
  • Twenty-fifth anniversary of the Medicare Hospice Benefit.
  • The Department of Veterans Affairs launches a program to increase veterans’ access to hospice and palliative services while providing educational opportunities for clinicians in veterans’ healthcare facilities.
  • Rallying Points, an initiative of Robert Wood Johnson Foundation’s Last Acts campaign, begins a three-year initiative to improve care and caring near the end of life.
  • Claire Tehan is recognized with the NHPCO Founder’s Award.

2003

  • National Hospice and Palliative Care Organization celebrates its 25th anniversary.
  • NHPCO gives a grant of $100,000 to the Veterans Health Administration to begin the Veterans Administration Hospice and Palliative Care (VAHPC) initiative.
  • A Clinical Guide to Supportive and Palliative Care for HIV/AIDS is released by the U.S. Health Services Resource Administration at The White House Conference on Palliative Care and the HIV/AIDS Global Pandemic.
  • The web-based Family Evaluation of Hospice Care (FEHC) Survey is launched.
  • The hospice awareness ribbon is unveiled prior to November’s National Hospice Month.

2004

  • More than 1 million Americans with a life-limiting illness are served by the nation’s hospices, the first time the million-person mark has been crossed.
  • The Clinical Practice Guidelines for Quality Palliative Care are published in May by the National Consensus Project, a consortium of palliative care and hospice organizations.
  • The Diana, Princess of Wales Memorial Fund and the Franklin Mint make a $3.35 million gift to NHPCO to promote better end-of-life care.

2005

  • Caring Connections, NHPCO’s consumer engagement initiative launches the comprehensive “It’s About How You LIVE” national campaign.
  • Robert Wood Johnson Foundation continues its support of NHPCO’s Caring Connections consumer engagement initiative with an additional $4.9 million grant.
  • The Department of Veterans Affairs releases the report, VA Transforms End-of-Life Care for Veterans.
  • National dialog on the importance of advance care planning increases as the case involving Terri Schiavo—who dies in March—escalates in the media and within public policy debates.
  • The first national conference on access to hospice and palliative care is hosted by NHPCO in St. Louis.
  • The Society for Nonprofit Association Publishers awards NHPCO the EXCEL Gold Award for its hospice education print advertising series.
  • The number of hospice provider organizations throughout the country tops 4,000 for the first time.
  • J. Donald Schumacher testifies at a Hearing on “Health Care Provided to Non-ambulatory Persons” to the Committee on Health, Education, Labor and Pensions, United States Senate.

2006

  • A celebration of Dame Cecily Saunders’ life is held in Westminster Abbey on March 8; the U.S. hospice community issues a resolution honoring her.
  • A Guide to Supportive and Palliative Care for HIV/AIDS in Sub-Saharan Africa is released; the publication is funded by the U.S. Government through the HIV/AIDS Bureau, Health Resources and Services Administration, and NHPCO.
  • Quality Partners, developed to build organizational excellence and improve hospice and palliative care delivery and outcomes, is launched by NHPCO.
  • Inaugural World Day is held on October 1 to focus global attention on hospice and palliative care with events in 70 countries.
  • A National Framework and Preferred Practices for Quality Palliative and Hospice Care is published by the National Quality Forum.
  • The African Palliative Care Association (APCA) is established in Kampala, Uganda, and provided funding by NHPCO.
  • PEPFAR/USAID awards FHSSA a New Partners Initiative grant totaling $5,008,849.

2007

  • Research published in the Journal of Pain and Symptom Management reports that hospice patients live an average of 29 days longer than similar patients who did not have hospice care.
  • Findings of a major study out of Duke University published in the Journal of Pain and Symptom Management show that hospice services save money for Medicare and bring quality care to patients and families.
  • The National Quality Forum releases A National Framework for Palliative and Hospice Care Quality Measurement and Reporting.
  • The Alliance for Care at the End of Life (ACEOL), a 501(c)4 organization, is created to provide the hospice community with a comprehensive, strategic voice on Capitol Hill.
  • The Worldwide Palliative Care Alliance is formed to address global care needs at the end-of-life.  NHPCO becomes a member.

2008

  • The inaugural National Healthcare Decisions Day is held on April 16.
  • NHPCO and its affiliate organizations (National Hospice Foundation, FHSSA, and The Alliance for Care at the End of Life) move into the National Center for Care at the End of Life in Alexandria, Virginia.
  • The first major revision of Medicare Hospice Conditions of Participation (CoPs) since the Medicare Hospice Benefit was established is published as a final rule in the June 5, 2008 Federal Register.
  • Results of first Quality Improvement Organization (QIO) hospice initiative, the PEACE Project, provide quality measures and develop an instrument to measure quality of care at the end of life.

2009

  • The Accreditation Council for Graduate Medical Education, a private, non-profit organization responsible for the accreditation of post-MD medical training programs within the United States, adds hospice and palliative medicine to its list of accredited programs.
  • The number of hospice volunteers continues to grow with a record 550,000 serving as volunteers.
  • The NHPCO Standards of Practice for Pediatric Palliative Care and Hospice, along with the companion publication Facts and Figures on Pediatric Palliative and Hospice Care in America, are released.
  • Hospice leaders from the U.S. meet HRM Queen Elizabeth II at the Silver Jubilee Celebration for the U.K.-based Help the Hospices.
  • Research published in the Archives of Internal Medicine suggests benefits of advance care planning discussions with physicians include lower costs and reduced utilization of aggressive care at the end of life.
  • Quality Guidelines for Hospice and End-of-Life Care in Correctional Settings is published by NHPCO.
  • FHSSA celebrates its 10 Year Anniversary with fundraiser in Denver as part of NHPCO’s Clinical Team Conference.

2010

  • NHPCO Standards of Practice for Pediatric Palliative Care and Hospice receive American Academy of Pediatrics Affirmation of Value.
  • We Honor Veterans, a pioneering campaign to help improve the care Veterans receive from hospice and palliative care providers, is launched by NHPCO in collaboration with the Department of Veterans Affairs.
  • The Patient Protection and Affordable Care Act is passed by the Congress.  A provision requires state Medicaid programs to allow children with a life-limiting illness to receive both hospice care and curative treatment.
  • Alliance for Care at the End of Life changes its name to Hospice Action Network (HAN).

2011

  • NHPCO publishes the report, Private Conversations and Public Discourse: The Importance of Consumer Engagement in End-of-Life Care.
  • The Concurrent Care for Children: Implementation Toolkit is released by NHPCO and the District of Columbia Pediatric Palliative Care Collaboration.
  • Campaign for the National Center for Care at the End of Life is launched by National Hospice Foundation.
  • Ethical Marketing Practices position statement and commentary are released by NHPCO.
  • The bicameral Wyden-Roberts HELP Hospice Act is introduced in Congress.
  • Association Trends awards NHPCO the 2011 All Media Contest Gold Award for the 26th Annual Management and Leadership Conference Learning Journal.

2012

  • LIVE—Without Pain, a new public awareness campaign from NHPCO’s Caring Connections, is launched to dispel myths about pain and empower consumers.
  • An innovative, online advocacy resource, the Legislative Action Center, is created online by the Hospice Action Network.
  • More than 1.5 million people are reached through the six-part online video series, Basics of Hospice.
  • Ann Morgan Vickery receives NHPCO’s “Healthcare Architect Award”.
  • Bernice Catherine Harper receives the Global Vision Award in recognition of her work in expanding access to palliative care in Africa.
  • The Hospice Action Network hosts its first Advocacy Intensive to educate clinical front-line caregivers about hospice policy and how to advocate for hospice on Capitol Hill and at home.

2013

  • Research from Mount Sinai’s Icahn School of Medicine demonstrates cost savings of hospice; NHPCO and Hospice Action Network work to take this research to legislators and the media.
  • ehospice is launched as a globally run online news and information resource committed to offering the latest news, commentary and analysis from the world of hospice and palliative care. ehospiceUSA is powered by NHPCO.
  • NHPCO and HAN host “Conversations Before the Crisis,” a symposium focused on Advance Care Planning.

2014

  • Forty years after the creation of Connecticut Hospice, NHPCO and its affiliates celebrate 40 years of hospice care in the US.
  • Moments of Life: Made Possible by Hospice public engagement campaign is launched at the NHPCO Management and Leadership Conference.
  • FHSSA expands its mission globally and is re-launched as Global Partners in Care.
  • At the HAN Advocacy Intensive, participants secure signatures from 202 U.S. Representatives and 75 U.S. Senators on letters urging CMS to halt implementation of Part D guidance that negatively impacted hospice providers, patients, and families.
  • Congress passes the Improving Medicare Post-Acute Care Transformation Act, or “IMPACT Act”, and President Obama signs it into law.

2015

  • We Honor Veterans initiative is awarded the prestigious Summit Award by the American Society of Association Executives. Additionally, ASAE awards Global Partners in Care with its Power of A Gold Award.
  • Moments of Life: Made Possible by Hospice public engagement campaign is recognized with the eHealthcare Leadership Gold Award, and Bulldog Reporter’s Gold Award for Best Non-profit Campaign.

2016

  • CMS launches hospice payment reform – the first change to the Medicare hospice payment system since the benefit was established.
  • Don Schumacher retires as CEO/President of NHPCO.
  • Edo Banach, JD, is hired as CEO/President of NHPCO.

 

2017

  • For the 10th anniversary of National Healthcare Decisions Day, NHPCO & HAN hosted a Capitol Hill briefing on advance care planning.
  • We Honor Veterans reached more than 4,500 partners since the program launch.
  • The exhibit “Hospice: A Historical Perspective” went on permanent display at NHPCO.

2018

  • The Medicare Patient Access to Hospice Act was signed by the President in February.
  • Launched the national My Hospice Campaign in April designed to reinforce the value of the Medicare hospice benefit among policy and health care decision makers.
  • The Hospice Compliance Certificate Program was launched at the Interdisciplinary Team Conference in New Orleans in November.
  • Legislation was passed to address the Opioid crisis that included a safe disposal provision for qualified hospice staff.