Palliative care project providing hospice care to all

Studies, conferences, guidelines result from work

What does it take to make progress in improving end-of-life care for people impacted by chronic diseases? The answer: a little seed money from a foundation and a meeting room full of dedicated and energetic health care professionals.

The formula reaped big rewards when the Robert Wood Johnson (RWJ) Foundation of Princeton, NJ, launched its program called Promoting Excellence in End-of-Life Care in 1997. The program had modest ambitions at the time, but now, almost 10 years later, the benefits and rewards of that effort keep multiplying.

The RWJ Foundation's main focus was on funding innovation in palliative care, and a call for grant proposals resulted in 678 letters of intent, recalls Jeanne S. Twohig, MPA, deputy director of the Duke Institute on Care at the End of Life in Durham, NC. Twohig formerly was with the national office of the RWJ Foundation.

"The idea was that hospice work, when done well, is a good standard," Twohig says. "So we looked at how do you take the best of hospice and make it available to other populations who were not participating in hospice for a variety of reasons: some by diagnosis, some by economics, some by geography, and some were patients who didn't fit the hospice model, but had palliative care needs."

But when the 678 proposals arrived, RWJ staff were nonplussed: "I think we only had the resources to fund about 30," Twohig says.

"So what that said to us is, 'Wow! There is tremendous need across the country to look at this very issue of extending palliative care to new patient populations, and there are energy and ideas out there about how to do it,'" Twohig says. "So we had mixed emotions — we were thrilled to see the ideas, but we were grieved we couldn't respond."

As a result, RWJ staff came up with an idea to fund collaborations among various providers in a particular health care area.

"We saw pockets of innovation in different parts of the country, and we felt if we brought those together then we might do different things," Twohig says. "So we concocted care to different work groups."

These groups focused on critical care, end-stage renal disease, HIV/AIDS, surgery, and other areas.

By putting passionate leaders around a table together, the project escalated beyond the original goal of having each group create a project that would be a recommendation to the field, Twohig notes.

"We had no idea of the power this idea would yield," Twohig says. "We didn't know the capacity for change that would be eventually realized through these workgroups."

Not only did the workgroups develop recommendations, but they created new tools, initiated major policy changes at the national level, conducted research, and made new public and professional educational material.

"We thought they would forecast what their niche needed to advance palliative care, but they also ended up doing what they were forecasting," Twohig explains. "In some cases, where the recommendations were to make a policy change in a particular realm, there were the right people at the right table to craft what the policy change would look like and to bring it to the right camp."

Focusing on ESRD

For example, the end-stage renal disease (ESRD) workgroup accomplished some major changes in palliative care for ESRD patients, including making recommendations to advance the integration of palliative care within dialysis practice and expanding clinical resources to nephrologists and dialysis clinical staff.

"We found out there was this failure of dialysis units to honor patients' wishes regarding CPR, so we drafted a model policy on do-not-resuscitate orders in dialysis units, which could be adopted by a dialysis unit," says Alvin H. Moss, MD, professor of medicine at the West Virginia University School of Medicine in Morgantown. Moss was chair of the ESRD workgroup.

The workgroup also conducted research, using about $25,000 in funding from the RWJ Foundation, and the group, with additional funding, held focus groups, conference calls, and meetings, Moss says.

"We had 21 health care professionals working very hard for an 18-month period," Moss says.

The renal workgroup held a series of focus groups to help group members understand where the field was in terms of palliative care, Twohig notes.

"They received incredibly valuable information about the patient's perspective and end-of-life issues for renal patients," she says. "The result of those focused groups informed the work of the workgroup and was made available to inform others interested in that topic."

The ESRD workgroup also revised position statements on quality end-of-life care for two groups, including the Renal Physicians Association and the American Society of Nephrology, Moss says.

Workgroup members reviewed existing statements and then updated them and posted them on the major web sites for the nephrology organizations, Moss says.

"Since then, we've done research and have determined that the physicians who say they're most prepared to handle end-of-life discussions and treatments for dialysis patients are those who are familiar with our workgroup products," he says.

Another group that accomplished more than anticipated was the surgeons' workgroup, Twohig says.

"The American College of Surgeons took on this issue of palliative care, and they partnered with us in sponsoring the surgeons' workgroup," Twohig says. "So right there we had the benefit of having a standard-bearer for surgeons that became a vehicle for continuing change for all of this."

Also, the surgeons' workgroup put on a national conference on palliative care and contributed articles to journals, creating a series on palliative care that ran over a year's period, Twohig says.

"The first thing the surgeons' workgroup accomplished was discovering each other," says Geoffrey Dunn, MD, FACS, medical director of the Palliative Care Consultation Service and senior surgical consultant at Hamot Medical Center in Erie, PA. Dunn was a co-chair of the surgeons' workgroup.

"We had felt like voices in the wilderness and were happy to see how consistently and passionately we all believed in palliative care," Dunn says. "There was an immediate sense of 'Now we can do something because we've found each other.'"

Despite long odds, the workgroup accomplished a great deal, notes Robert A. Milch, MD, FACS, medical director of The Center for Hospice and Palliative Care in Cheektowaga, NY. Milch also was a co-chair of the surgeons' workgroup.

Surgeons typically are trained to never look within or to take a passive and reflective approach to patient care, Milch says.

"That's why we took so much satisfaction that so much of the work of the surgical workgroup was changing that philosophy," Milch says. "And you could measure the impact in the number of presentations at clinical colleges of the American College of Surgeons or with residency training programs [that incorporate palliative care]."

"We oftentimes don't think about surgeons having anything to do with palliative care, and they truly do," Twohig says.

The entire RWJ project placed an 18-month time limitation on workgroups, and the funding was limited.

But within these constraints, some incredible work was done in improving the way palliative care is viewed nationally, Twohig says.

"The people in the workgroups were well-connected individuals who were able to make these groups come to life," she explains. "There was enough ownership of these recommendations that came from the workgroups to create a legacy and investment."

The workgroups were an important response to the unmet need for palliative care nationally, Moss says.

"We're just waking up in this country," Moss explains. "The whole physician-assisted suicide headlines of the 1990s were a wake-up call that we need to do more with palliative care."

Palliative care is appropriate anytime a patient has a chronic illness, including during end-of-life care, Moss says.

"But it can be applied to a patient who isn't necessarily dying, but is expected to do worse over time," Moss says.


For more information, contact:

  • Malene Davis, MBA, MSN, RN, CHPN, President and CEO, Capital Hospice, 6565 Arlington Blvd., Suite 501, Falls Church, VA 22042. Phone: (703) 531-6201. E-mail:
  • Kidney End-of-Life Coalition, 1527 Huguenot Road, Midlothian, VA 23113. Phone: (804) 794-3757. E-mail: Web site:
  • Alvin H. Moss, MD, Professor of Medicine, West Virginia University School of Medicine, P.O. Box 9022, Morgantown, WV 26505-9022. Phone: (304) 293-7618. E-mail: