The US hospice care movement began in the 1970s with a small number of committed advocates seeking a more humane alternative to end-of-life care. Although healthcare was modernizing, the medical establishment’s focus on curative medicine (seeking to cure patients) over palliative care (relieving the symptoms and stress of a serious illness) meant that too often hospital professionals misunderstood or ignored dying people’s wishes, and patients perished in pain and distress.

Advocates established the first US hospice in Connecticut in 1973 in order to create an environment of support and dignity for dying patients. By 2013, US hospices served more than 1.5 million patients annually, a figure equal to almost 60 percent of all deaths in the country (including sudden deaths, for which hospice and palliative care is not relevant).

How did the hospice movement tip the scales of change? The earliest hospices relied heavily on volunteers and were funded with piecemeal philanthropy. In 1978 the CEO of the Connecticut Hospice urged the broader volunteer movement to form an organizing body, the National Hospice Organization (NHO). That year also saw the start of both federal government endorsement, with a Department of Health, Education, and Welfare task force validating the approach, and federal research funding through the National Cancer Institute. By 1979, the NHO and its leaders published a set of common standards of practice for hospice care to enable certification and quality control, and began advocating for Medicare reimbursement.

While the NHO was (and remains today) largely supported by volunteers and member dues, philanthropy has helped the movement over each hurdle of institutionalizing palliative care in the US health system. In the early 1980s, the W.K. Kellogg Foundation (WKKF), Robert Wood Johnson Foundation (RWJF), and others invested significantly to formalize and institutionalize the concept through both standard-setting and advocacy. Indeed, in 1982, an NHO-led advocacy campaign (with support from WKKF) helped to win congressional approval for a Medicare Hospice Benefit.

In the 1980s and 1990s, as hospice developed more widespread awareness and acceptance from both patients and providers, RWJF continued to invest in understanding the quality of end-of-life care. The foundation’s SUPPORT study revealed startling deficiencies in the growing field, suggesting the need for a dramatic change in mindset and approach by the medical establishment. Its results led to deep investment to significantly advance the field of end-of-life care and much more firmly embedded end-of-life care in a broader field, which included hospice. The broader field—palliative care—would apply to more patients, in more cases, and be part of hospital care—and would move hospice into the mainstream medical establishment. Through the 1990s and 2000s, RWJF and the Open Society Institute spent a combined $215 million (almost $275 million in 2017 dollars) advancing this concept. Through their investments to improve professional practice, develop the talent base, and gain widespread cultural acceptance, the quality, availability, and utilization of hospice and palliative care significantly increased during this period.

Researched and written by Consultant Andrew Flamang of The Bridgespan Group, based on Bridgespan interviews with Stephen Connor, executive director of the Worldwide Hospice Palliative Care Alliance; Bob DeVries, former health and leadership program director at the W.K. Kellogg Foundation; and Diane Meier, director of the Center to Advance Palliative Care, as well as selected sources.

​Selected Sources