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After 10 years, $200m effort on dying reaches its own end

Among big-time donors in the 1990s, death got hot.

In particular, the Project on Death in America, financed by billionaire George Soros and the Robert Wood Johnson Foundation, poured more than $200 million over the last decade into end-of-life programs and research.

But now the Project on Death is itself dying, and the Robert Wood Johnson Foundation is phasing out almost all related projects and shifting toward childhood obesity and the nursing shortage.

The great stream of money that helped bring so much more attention to the dying in hospitals, in hospice care, and in public discourse is slowing to a trickle. Specialists in end-of-life issues are concerned that though a great deal has been done, much remains to do -- and say the controversy over the Terri Schiavo case in Florida illustrates their point. They fear that progress in physician training and research could stop or even backslide.

"The field as a whole has made great advances in patient care and research over the past 10 years," said Lori McGlinchey, the program officer who is helping close out the Project on Death in America. "But there are not enough dependable sources of funding to push it over the edge into self-sustainability."

Officials at the two foundations say their shift in funding is coincidental, and the result of how philanthropy works: Foundations often focus on relatively short-term giving that they hope will serve as a catalyst for broader change. Then they move on.

"I worry that people will think pulling out means it didn't work, it wasn't a success, it's not glamorous, it's not sexy," said Dr. Kathleen M. Foley, director of the Project on Death in America. On the contrary, she said: "Pulling out is more normalization at the local level."

The idea now is that smaller, local donors should pick up more of the bill for work done on death and dying in their communities; and that the federal government, too, will step in more, said Foley and Vicki Weisfeld, senior communications officer at the Robert Wood Johnson Foundation.

The foundations have laid extensive groundwork for such a shift. Special palliative care services were once extremely rare in hospitals; now, 800 of the nation's 5,000 hospitals have them. Palliative care specialists treat patients who face life-threatening illness or death, and work on the principle that patients should have maximal dignity and minimal pain. Their work ranges from treating symptoms like breathing trouble to helping the patient face death emotionally and spiritually.

The foundations also helped form about 360 local coalitions to address end-of-life issues, Weisfeld said. "Ultimately, that's where it has to happen," she said. "Individual physicians and hospitals and nursing homes need to step up to the plate."

Tens of thousands of doctors and nurses have received some training in end-of-life care in the last few years, she said. Medical textbooks now include more about care of the dying.

And despite the widespread desire to avoid the subject, death and dying have been drawing more public attention, from a Bill Moyers television special on dying that attracted 19 million viewers, to the front-page coverage of the Schiavo case, the battle between a brain-damaged woman's parents and her husband over whether she would want to keep living.

But much remains on the to-do list, say those in the field. Palliative care is not an officially recognized medical sub-specialty, which means the federal government does not pay for doctors to take advanced training in it. Many expect that recognition within a couple of years, but until it comes, the field has a tint of insecurity.

If the shriveling money supply means that fewer young doctors and nurses train in caring for the dying, "It would be a huge tragedy for the field, and has the potential to compromise the care for many people who won't have access to expert palliative care services when they need them," said Dr. Susan Dale Block, codirector of the Harvard Medical School Center for Palliative Care and a board member of the Soros project.

Another continuing need, specialists say, is for more research into which medical practices work best in care of the dying.

"I feel like the whole area of research in palliative care is just in its infancy," said Dr. Joanne Wolfe, medical director of the pediatric advanced care team at Children's Hospital Boston and the Dana-Farber Cancer Institute. "Many people in the field came into it because of clinical passion but not necessarily as clinical investigators."

Palliative care for the poor is also in its infancy, said Dr. Eric Krakauer of Massachusetts General Hospital, who focuses on how best to treat the dying when money is scarce. "Both domestically and internationally, I think the loss of funding will mean a lost opportunity to figure out how to relieve the suffering of poor people everywhere," he said.

The two foundations are not going to abandon the field totally: The Soros project plans to act as a resource center to encourage other donors to support death-and-dying causes; and Weisfeld said the Robert Wood Johnson Foundation plans to follow the field and watch for backsliding. From the dying patient's point of view, work is still needed on items as simple as convincing doctors that they should immediately prescribe anti-anxiety medication when they deliver a terminal diagnosis, said Laura Schmidt-Pizzarello. She is a medical writer specializing in end-of-life care who is dying of pancreatic cancer at age 51, and is writing essays and a book about it.

But Schmidt-Pizzarello said that she can also see some good that has come out of the recent work on improving end-of-life.

"What's good that's come out of it is that now pain is accepted as the fifth vital sign, which is something that never was before." She said her doctors are intensely focused on her pain, and "I think that was really a major coup."

Carey Goldberg can be reached at goldberg@globe.com.

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