Florence Wald, pioneer in the field of hospice care in the United States
When the leaders of the National Hospice Organization (later renamed the National Hospice and Palliative Care Organization) founded NHF in 1992, one of the fundamental issues facing the field was educating Americans about hospice.
Hospice had only started in the U.S. in 1974. The Hospice Medicare Benefit—the groundbreaking legislation that provides reimbursement to hospices for the majority of their patients—had been passed by Congress just 10 years before, in 1982. Many Americans had still not heard of hospice or if they had, they did not truly understand what it was. Learn more hospice history here.
Thus, NHF was founded to “expand America’s vision for end of life care” and in so doing, “engage and inform the public about the quality end-of-life care that hospice provides.”
For our first decade or so, we focused successfully on major consumer awareness initiatives.
- In 1996, we organized a photo exhibition, Hospice: A Photographic Inquiry, in partnership with the Corcoran Gallery of Art. The show opened in Washington, DC at the Corcoran and then traveled to 18 cities across the country. Wherever it went, the exhibit made people talk about hospice care – just what we intended.
- Also in 1996, Home Box Office and NHF created and aired the documentary, “Letting Go: A Hospice Journey” which aired eight times on HBO and gave viewers an intimate look at how someone finds meaning by sifting through a lifetime of hopes, accomplishments, satisfactions, and regrets. Videocassettes of the documentary were also made widely available across the country.
- We began reaching out to physicians through a video titled Care Beyond Cure. The video won the International Health and Medical Media award (also known as the Freddie Award) in 1997 for "outstanding work in educating health professionals and/or the general public on a vital issue." Care Beyond Cure was later adopted for use in a number of medical training programs.
- In 1997, we conducted national research to learn more about America’s attitudes regarding end-of-life care. That Gallup survey found that nine of every 10 adults would prefer care at home if they had six months or less to live, and seven in 10 adults said they would seek a hospice program, if terminally ill. Yet the survey also revealed that most Americans did not realize that hospice care was available at home, nor did most know that costs were typically covered by Medicare or private health insurance.
- Armed with information from the Gallup survey, we embarked on a program to provide Americans with information about hospice care and to dispel misconceptions. The Foundation printed and distributed to thousands of hospices and other organizations across the country several booklets -- A Consumer’s Guide to Selecting a Hospice Program, Hospice Care and the Medicare Benefit, and Communicating Your End-of-Life Wishes, with helpful suggestions about how people could have honest conversations about what they wanted – and did not want – as they neared the end of life.
- In 1999, the U.S. Postal Service honored hospice care by introducing a commemorative hospice care stamp. This commemoration honored the millions of Americans who have benefited from hospice care – dying patients and their families –as well as the volunteers who have tirelessly cared for them. The official stamp launch event brought national media attention to hospice, and hundreds of local events generated awareness of hospice care in communities throughout the country.
- Keenly aware that television is a powerful medium for reaching wide audiences, we invested significantly in creating and distributing public service announcements in 2001-2003 all designed to empower Americans with the information necessary to secure the benefits of hospice care.
2005 marked a turning point for NHF, due to three events that have shaped our work ever since.
- NHPCO identified two themes for its work and called upon NHF, as the philanthropic engine of NHPCO, to be heavily involved in fundraising for quality and access initiatives and administering grants awarded to either NHF or NHPCO in these areas.
- NHPCO was awarded a major multi-million dollar three-year grant from The Robert Wood Johnson Foundation for the Caring Connections consumer awareness initiative. This funding allowed NHPCO to catapult their consumer outreach to an entirely new level, and created—among other substantial efforts--- www.caringinfo.org. This Web site is packed with valuable information for caregivers and other seeking information about end-of-life planning and hospice/palliative care. The Caring Connections program beautifully filled the niche for consumer awareness and so, instead of creating consumer awareness pieces ourselves, we were tasked with raising additional funds to support Caring Connections.
- FHSSA became part of the NHPCO family and NHPCO was awarded a multi-million dollar grant from the Diana, Princess of Wales Fund, to support FHSSA’s work. We became part of the team administering that grant and then raising additional support through the FHSSA Impact Fund.
These three events significantly changed the course for NHF, expanding our mission from consumer awareness and opening us up to opportunities to raise funds for a much broader portfolio of programs.
We are grateful to all the board chairs who helped shape NHF from its early stages to the robust organization it is today.