To bring about a seismic shift in the way Americans viewed end-of-life care, the Robert Wood Johnson Foundation (RWJF) had to find a way to convince medical care providers and the public to have a very tough, but important, conversation that they preferred to avoid. The catalyst for change was a groundbreaking report—revealed just days before Christmas—in the December 1995 issue of Time magazine.
The findings of SUPPORT—the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment—were part of the article, “Knowing When to Stop,” a lengthy discussion of the fact that American physicians often ignored the last wishes of dying patients and caused unnecessary anguish and stress.
With $28 million of RWJF funding, William Knaus, MD, led SUPPORT, which is still the largest study of its kind on end-of-life care. Commenting on the findings gathered from the 10,000 patients who participated in the research, Knaus, a distinguished professor at the University of Virginia School of Medicine, said “there is a tragic mismatch between the health care many seriously ill and dying people want and what they get.” SUPPORT found that most Americans spent their final days in pain, after weeks of expensive, ineffective treatments.
Building a Field
Sure that the issues had been clearly defined, RWJF gave the green light for the next phase of SUPPORT, a clinical trial designed to solve the problem. Working with 2,652 critically ill patients, the researchers attempted a targeted intervention to ease suffering at the end of life. Foundation staff were understandably shocked when the researchers reported that the intervention had “no effects.” But that surprise, negative ending, actually became the beginning of the RWJF plan to help create the field of palliative care.
Rather than keep quiet about the study findings, RWJF bravely released the daunting results, alerting the public, philanthropists, policy experts, and medical professionals to the seriousness of the end-of-life care problem. Over the next nine years (1996 to 2005), RWJF would spend roughly $170 million dollars to bring together critical players in health care to create what is now the nation’s system of hospice and palliative care.
Understanding the need to build a coalition that could give voice and direction to end-of-life care issues and bring the lay public into the fold, RWJF made three crucial grants to create:
- Last Acts®. Began in 1995 and one of the largest projects in the group, the program became a resource and organizing force for advocates seeking to build far-reaching awareness on the issues.
- Promoting Excellence in End-of-Life Care followed in 1996. Program head Ira Byock, MD, an emergency room physician, was a fervent believer in the need to help his fellow physicians make peace with the difficult concept of giving care, even if a cure was not an option.
He introduced the idea of giving patients palliative care and life-prolonging treatment simultaneously—an approach that helped to alleviate patient’s fears and physician’s objections to the end-of-life-care model.
Byock said, “[our program] demonstrated that you can provide concurrent palliative care without requiring patients to give up active, disease modifying treatment.
- Education in Palliative and End-of-Life Care provided exactly what it promised. With a curriculum created by the American Medical Association and funded by RWJF in 1997, the program set out to train practicing physicians and design a train-the-trainer model to be used across the country. The program faced some resistance at first, but ultimately, it provided the knowledge base for accredited, end-of-life care education.
Additional programs, publications, and initiatives to train nurses and other health care providers followed these early projects. The combined efforts produced a new evidence-base, new standards of clinical practice and a far greater public understanding of the value of seeking care when seriously ill.
There are now more than 4,000 physician members of the American Academy of Hospice and Palliative Care (there were 250 in 1988). And nearly 10,000 nurses have joined the Hospice and Palliative Nurses Association since 1987. Nationwide, more than 5,000 hospice programs assist nearly 2 million patients each year. The study called SUPPORT has produced just that for critically ill patients and their loved ones, during one of the most difficult phases of life.