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Palliative Care Fall Forum 2000

Proceedings Summary

Center to Advance Palliative Care

More than 350 attendees gathered in Washington, DC, December 3-5, 2000, for the Fall Forum 2000 sponsored by the Center to Advance Palliative Care (CAPC). Participants from academia, professional organizations, and hospitals and healthcare systems nationwide spent time learning, networking and sharing their passion for improving end-of-life care.

Sunday
December 3, 2000

Greetings

The forum kicked off December 3 with a late-afternoon general session. Participants were welcomed by CAPC co-director Christine Cassel, MD; David A. Gould, PhD, senior vice president for programs, United Hospital Fund of New York; and Rosemary Gibson, senior program officer, The Robert Wood Johnson Foundation.

After showing a clip from the PBS series On Our Own Terms: Moyers on Dying, Cassel acknowledged the many lessons in end-of-life care learned from the hospice movement. Noting that "no hospital is an island," she stressed the need to bring end-of-life care to where the patient is—home, hospital or long-term care facility.

David Gould followed with a summary of CAPC’s first-year accomplishments and put forth three forum goals based on the core principle of collaboration:

  • To offer new, practical information
  • To stimulate networking among colleagues with common challenges
  • To nurture relationships that will sustain participants in years to come

Noting that the healthcare system does not embrace significant change often, Rosemary Gibson observed that end-of-life training is taking place not only in medical education programs but also among practicing health professionals. She also acknowledged the 300 community coalitions formed in support of the On Our Own Terms PBS series. Gibson summed up her welcome by paraphrasing Gandhi: "Whenever there is a good cause, people just pop up."

General Session: Laying a Foundation

The opening general session also featured four presentations intended to establish an informational base for the remainder of the forum

  • Carolyn Boone Lewis, chair of the board of trustees, American Hospital Association, reminded participants that they must rethink and reframe how healthcare is delivered. How does health care look from the eyes of the patient? What healthcare is appropriate and when? These questions, Lewis noted, are especially important at the end of life. She observed that the healthcare system does not know how or when to stop care and often uses interventions that do not work. Nevertheless, she concluded, both hospitals and palliative care are essential to humane care. CAPC, Lewis noted, is providing exposure to this concept. In closing, Lewis challenged forum attendees to be "the soul and intellect of a system that is underfunded."
  • David Simpson, National Hospice and Palliative Care Organization, challenged forum participants to" help make dying well as common as living well." To accomplish this goal, palliative care must be moved upstream in the delivery process. Simpson noted that his organization is exploring hospice care models in various settings and is encouraging hospices to partner with healthcare providers earlier in the disease process.
  • Diane Meier, MD, CAPC co-director, explained that hospitals are a critical place for establishing palliative care because critically ill people usually pass through the hospital. In addition, she noted that family members of the patient are often the unrecognized, unexamined victims of serious illness. Meier observed although it is accepted in our society that people with cancer be given pain medication, even these patients do not get adequate pain relief.
  • John E. Wennberg, MD, director, Center for Evaluative Clinical Sciences, Dartmouth University, used data presented in the Dartmouth Atlas to explore spending patterns in end-of-life care. In areas of the country where healthcare spending is high, more money is spent in the last six months of life on medical specialists, intensive care, hospital days and doctors visits. Does high-intensity care at the end of life provide better outcomes? Wennberg believes not.
Keynote: Improving Palliative Care

Gail L. Warden, MD, president and CEO, Henry Ford Health System, Detroit, gave the keynote dinner presentation. Warden outlined five steps for improving palliative care:

  • Establishing a palliative medicine service that serves all patients regardless of diagnosis or location; assists patients, families and the medical team in end-of-life decision making; and offers education to physicians, nurses and other staff
  • Understanding the change in allocation of services from curative to palliative; recognizing the coexistence of curative and palliative care; acknowledging that curative therapy is not superior to palliative and psychosocial support; and focusing on what the patient (family) needs rather than on disease treatment
  • Recognizing the barriers to effective end-of-life care, including the lack of professional knowledge and skills in palliative care
  • Making a commitment to end of life care; making end-of-life care a priority among medical staff and board of trustees; and identifying champions
  • Enhancing communication to achieve real improvement by integrating palliative medicine into the comprehensive automated medical record and by promoting communication between patients, families and providers

Warden closed with a compelling thought about organizational renewal: The timing is right for making a commitment to end-of-life care. Thanks to layoffs and regulation and financing issues, we have become dispirited, Warden maintains. We need something to pull us together. When we "think about each patient first," patients are more satisfied and employees feel better about what they do. Palliative care is an opportunity to make this happen.

Monday
December 4, 2000

The day began with an early-morning impromptu session led by Joanne Lynn, MD, Center to Improve Care for the Dying, on the need to collect data to document improvements in end-of-life care. A number of session participants shared data-collection methods they have used to justify palliative care.

Workshops

Monday’s scheduled agenda included a series of workshops on various aspects of establishing a palliative care program, including gathering and presenting supportive data; establishing hospital–hospice partnership and collaborations; measuring and assessing quality; and using palliative care consultations as a teaching tool.

Making the Case

Speaking on how to make the case for a palliative care program, Margaret Campbell, RN, MSN, CS, Detroit Receiving Hospital, and Charles von Gunten, MD, PhD, San Diego Hospice, explored four questions that form the framework of a strategic plan:

  • Who are we?

    Mission, vision, goals and objectives

  • Where are we now?

    Needs assessment

  • Where do we wish to go?

    Program description

  • How will we get there?
  • Business plan for operations and marketing
  • Financial plan for projected costs and revenues
  • Implementation plan
  • Evaluation plan
Forming Partnerships

Pam Barrett, CHE, ACSW, Hospice and Palliative Care of Greensboro, N.C.; Gretchen M. Brown, MSW, Hospice of the Bluegrass, Lexington, Ky.; and J. Donald Schumacher, PsyD, Center for Hospice and Palliative Care, Buffalo, explained in detail how they have established joint ventures and collaborative working arrangements with other healthcare providers. Among the informational highlights from this workshop are that:

  • All partners benefit in a successful collaboration, but the real advantage of an affiliation if that the community benefits.
  • Leadership among partners changes—and with it, partner priorities.
  • To be successful, an healthcare institution must consistently expand its boundaries.
  • End-of-life care providers must be where patients are—home health, long-term care, nursing home, mental health agency, etc.
  • Every person newly diagnosed with a serious/terminal illness should receive a palliative care consult.
Assessing Quality

Speaking on assessing quality in palliative care, Stephen G, Franey, FACCT, consultant; Paul M. Schyve, MD, JCAHO; and Joan M. Teno, MD, Brown University, reviewed methods for assessing quality including Teno’s Toolkit of Instruments to Measure End-of-Life Care and the then-pending JACHO Pain Standards.

Consultation as a Teaching Tool

Based upon the success of his integrated palliative medicine program—clinical service, educational programs and community outreach—at the Medical College of Wisconsin in Milwaukee, David E. Weissman, MD, presented methods for using the palliative care consultation as a teaching tool, including role modeling and small group learning.

General Session: State Initiatives

The morning workshops were followed by a general session in which several presenters reviewed state policy initiatives that affect end-of-life care.

  • Oregon: Grant K. Higginson, MD, Oregon Department of Health and Human Services
Death with Dignity Act
  • Medical Marijuana Act
  • Pain Management Task Force
  • New York: Richard Gottfried, chair, Health Committee, New York State Assembly
  • California: Susan Penney, JD, California Medical Association

Advance Health Care Directive Kit

Senator Rockefeller Speaks

The morning closed with a presentation by Senator John D. Rockefeller (D-WV). In her introduction to the session, Diane Meier, MD, noted the historic nature of the forum, observing that it was the first meeting in the nation—and perhaps the world—to deal with seriously ill and dying people in hospitals and health systems. Meier then introduced Sen. Rockefeller, commenting on his long-time interest in and support of end-of-life issues.

Rockefeller shared some of his family’s personal experiences surrounding the death of his mother. He then turned the tables on the group by asking the attendees to speak to him about what he perceived as a dearth of end-of-life education in medical school. A number of participants responded, included CAPC’s Chris Cassel, MD, and Rosemary Gibson, who reviewed recent successes of the Robert Wood Johnson Foundation initiative to add end-of-life information to medical textbooks.

Workshops

The afternoon featured four workshops focusing on developing a business plan, building referrals and palliative care in the home care setting and staffing a palliative care service.

Business Plan

Andrew Epstein, MD, and Lynn Hill Spragens, MBA both of the Bard Group, Newton, Mass., walked workshop attendees step-by-step through the creation of a business plan, stressing that a business plan is a dynamic document that goes far beyond a budget. As Spragens noted, the successful business plan will take palliative care from "nice to have" to "must have."

Building Referrals

Frank D. Ferris, MD, San Diego Hospice, and J. Cameron Muir, MD, Northwestern Medical Faculty Foundation, Chicago, talked about how to build referrals to a palliative care program. They delineated three audiences for referrals—clinicians, patient/family and institutions—and reviewed the benefits of referral to palliative care for each audience.

Home Care

Discussing palliative care in the home setting, Betty Ferrell, RN, PhD, FAAN, City of Hope, Duarte, Calif., presented the Home Care Outreach for Palliative Care Education (HOPE) project, a clinical education program supported by a grant from the National Cancer Institute. Bradley Stuart, MD, Sutter VNA and Home Hospice, Santa Rosa, Calif., presented CHOICES (Comprehensive Home-Based Options for informed Consent about End-Stage Services) program, a project of Sutter VNA and Hospice, North American Medical Management ( a capitated medical group) and Alta Bates Medical Center.

Interdisciplinary Care Team

Susan Blacker, MSW, The Johns Hopkins Oncology Center, Christina M. Puchalski, MD, George Washington University, and Marie Whedon, ARNP, Norris Cotton Cancer Center, Lebanon, N.H., spoke about recruiting an interdisciplinary care team, including setting the stage for building a team, hiring the right people, working together and implementing the service.

General Session: Medicare

The day ended with a general session focusing on Medicare and end-of-life issues. Murray Ross, PhD, Medicare Payment Advisory Commission (MEDPAC), stated that one quarter of Medicare spending occurs in the last year of life and that the dominant payment is for end-of-life care. Ross explained that the commission has recommended that Medicare make quality in end-of-life care a priority in Medicare. According to a commission expert panel, current barriers to quality care include training, communications and disregard of patient’s wishes. The panel has suggested that hospice be restructured according to disease severity and functional status and that end-of-life care be modeled after post-acute care—in other words, assessment based on need without regard for setting in which care is received.

Bruce Vladeck, PhD, Institute for Medicare Practice, Mount Sinai School of Medicine, explored two crisis affecting Medicare:

  • Provider crisis: The Balanced Budget Act took a bite out of provider payments and now an increased number of disabled and elderly are having trouble covering what Medicare does cover. Out of pocket costs are going up and supplemental insurance are going up while incomes are fixed.
  • Political crisis: Political leaders in both parties believe there is a long-term problem with solvency caused by an imbalance between beneficiaries and taxpayers supporting them. There will be twice the number of beneficiaries 30 years from now and costs will be more than twice what they are now.

Noting that Medicare cannot save its way into solvency—considering demographic trends— Vladeck urged that the Medicare problem be fixed in the short run. He stated that the 38 million people on Medicare now should not be held hostage for what we think will happen 30 years from now.

Joanne Lynn, MD, Center to Improve Care for the Dying, outlined the end-of-life questions raised by increasing life spans and the growing numbers of people with chronic, progressive diseases. Although most people think of a cancer-like model when they think of death—that is, sudden failure—in fact, only 20% of Americans die that way. Both organ system failure and dementia, for example, follow an up-and-down pattern over an extended period of time. For these people, what does "dying" mean? Lynn’s proposed approach to this dilemma is called "Medicaring"—the combination of disease management and palliative care.

Tuesday
December 5, 2000

General Session: Models of Care

The concluding general session focused on how to select a model of care.

  • Charles von Gunten, MD, PhD, San Diego Hospice, defined various palliative care models and noted that a model is often chosen based on administrator interest, clinician interest, community pressure or serendipity. He cautioned attendees to be careful what they wish for because they might get it—and be without a plan for growth.
  • Gail Aron, RN, Providence Hospital, Washington, DC, identified the primary way to survive and succeed: Build trust.
  • F. Amos Bailey, MD, Cooper Green Hospital Foundation, Birmingham, described the Balm of Gilead project, which includes a 10-bed inpatient palliative care unit, education of medical students and residents, community outreach, home services/hospice, and long-term care. Bailey also reviewed the projects outcomes to date, especially in terms of the special needs of minority, uninsured and low-income families.
  • Steven Z. Pantilat, MD, University of California, San Francisco, defined the medical specialty hospitalist . Because most Americans die in the hospital and because hospitalists are totally focused on providing inpatient care, they are ideally positioned (though not yet prepared) to improve inpatient palliative care.
  • Susan Hopper, PhD, United Hospital Fund, presented results from the Palliative Care Initiative (1995-1999) and previewed the Community Oriented Palliative Care Initiative (2000-2002).
Workshops

The remainder of the morning was devoted to workshops exploring palliative care in different settings:

  • Pediatric hospitals. Joanne Wolf, MD, MPH, Dana-Farber Cancer Institute, Boston, and Gerri Frager, MD, Pediatric Palliative Care Service, Halifax, Nova Scotia, presented some of the barriers to best care including the relative infrequence of life-threatening illnesses of childhood, varied developmental capacities, lack of common assessment and management tools, large geographic areas to cover with small numbers of children affected.
  • Cancer hospitals. Meri Armour, MSN, RN, Ireland Cancer Center, Cleveland, and Frederick J. Meyers, MD, University of California Davis Health System Davis, Sacramento, explored the conflicts between investigational cancer therapy (clinical trials) and palliative care and presented the simultaneous care model under investigation at UC-Davis.
  • Veterans Administration. James Hallenbeck, MD,VA Palo Alto; Judith Salerno, MD, Linda Johnson, PhD, RN, Jane Tollett, PhD, Veterans Health Affairs, Washington, DC, described the VA as a national laboratory for modeling systems of care without the same restraints as found in the private sector. The speakers described the VA Faculty Leaders Project and detailed the VA’s various palliative care initiatives and national strategies.

Additional Resources

Developing a Compelling Business Case for your Palliative Care Program
A CAPC Management Training Seminar
February, 2002 Tampa, FL
PowerPoint Presentation

Hospitalists: Opportunities and Challenges for Improving Inpatient Palliative Care
A CAPC Management Training Seminar
February, 2002 Tampa, FL
PowerPoint Presentation

The Balm of Gilead Project
A CAPC Fall Forum 2000 Workshop
PowerPoint Presentation

Palliative Care in Lexington, KY: Three Hospitals and a Hospice
PowerPoint Presentation

Staffing a Palliative Care Service
Recruiting an Interdisciplinary Care Team
A CAPC Fall Forum 2000 Workshop
PowerPoint Presentation



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