Rochester, New York
Patricia Bomba, MD
Excellus Medical Director, Geriatrics
(716) 328-4514 x3964
"I think that one of the important things is a recognition of the need to collaborate. We need to reach across the silos to get balance, to be able to partner across lines and move the initiative forward. . . .
We need to revolutionize things, ways of caring for people at the end of their lives. We need to accept that death is a natural process and be able to support people there."
— Patricia Bomba, MD
Excellus is involved in many initiatives and projects to promote excellence of care for people at the end of their life. This descriptive summary will report on the development of one project, the End of Life Palliative Care Quality Initiative, which is a community initiative.
One of the three operating principles for Excellus is "to improve the quality of life and health status of members of the community, and to reach out to all segments of the community." As such, objectives of the initiative include:
The Rochester Health Care Forum, under the direction of the Rochester Health Commission, is a community-wide effort to enhance the health of the greater Rochester area. The Commission works to increase access to and improve the quality of health care, and reduce the overall cost of care for everyone. In 1999, the BlueCross BlueShield of the Rochester Area (BCBSRA) and its physician partner, the Rochester Individual Practice Association (RIPA), two members of the forum, independently identified the delivery of quality end-of-life care as one of the most pressing health care issues facing the community. The two partnered to conduct a community-wide survey of health care delivery systems in 2000. The results of the survey, released in January 2001, were published in a document called the Rochester Community End-of-Life Survey Report. Results show that in terms of advance care planning, too few people, especially those with chronic illness, have advance directives.
The report provided the Forum with a starting point upon which to structure a broad-based community effort to enhance end-of-life care. Members of the Forum suggested that an initiative that built upon community end-of-life/palliative care efforts could have a profound effect on how end-of-life care is delivered, and could also serve as a state and national model. The Initiative is keeping issues of end-of-life care in the forefront of health care discussions in Rochester and beyond, and it is urged to be a priority for providers of care.
In 1999, Don Berwick, MD, President and CEO of the Institute for Healthcare Improvement, spoke to internists at the American College of Physicians meeting. Berwick presented a challenge to the internists. He raised end-of-life/palliative care as an initiative, and challenged the internists to make it a priority. BlueCross BlueShield picked up on the challenge and worked with hospice and practicing physicians to make it a reality. BCBS, along with its physician partner organization, RIPA, basically led this initiative under the leadership of Howard Beckman, MD, Medical Director of RIPA.
The RIPA/Blue Cross End-of-Life/Palliative Care Professional Advisory Committee was created. This group conducted a survey of hospitals, nursing homes, hospice, home care agencies and disease management programs to better understand the state of end-of-life care that was being delivered. The RIPA/BCBSRA Survey provided the Forum with a set of recommendations focused on improving the community’s end-of-life and palliative care.
Patricia Bomba, MD presented the survey initially to the Rochester Health Commission and subsequently to the Rochester Health Care Forum Leadership Group. Both the Rochester Health Commission and the Rochester Health Care Forum Leadership Group quickly approved adoption of the Promotion of Excellence in End-of-Life/Palliative Care as an eleventh initiative to the other 10 initiatives that the forum was already actively working on in the community. In the process, an advisory group was developed.
Four work groups have been formed to work toward:
The Rochester Health Commission, under the guidance of Bomba and Mary Jane Milano, Director, Rochester Health Commission, has spearheaded this initiative. The senior management at Excellus, particularly Howard Berman, the CEO, and David Klein, the Chief Operating Officer, and Kevin Hill, President of BCBSRA have supported the work in the community.
"Internally," Bomba says, "there is a recognition that you need to reach out to the community and get everyone on the same page. It is only with the support by the senior management of the organization that one can move a project forward."
The Rochester Community End-of-Life Survey Report was published in January 2001. It makes many far-reaching recommendations. Among them:
The vision of the End-of-Life Palliative Care Quality Initiative is to make every delivery component of end-of-life services aware and responsive to the many issues that affect quality of life. The initiative states, "It is critical for individuals to be provided with the highest quality of end-of-life care, and that care at the end of life is provided in a manner that best meets the individual and their family’s preferences and needs."
"It will take a strong, ongoing community-wide effort to ensure that this occurs. Decisions about end-of-life care are best made before a life-threatening event occurs, with the input of physicians and family. Yet these decisions, if made prior to an individual’s death, are often postponed until a catastrophic event with a family member motivates an individual to take the time to ponder and perhaps articulate his/her own health care wishes for end-of-life care. The recommendations included in the Rochester Community End-of-Life Survey Report should form the basis for action on the initiative which will build upon and strengthen, rather than add to or duplicate, the current community efforts to improve end-of-life and palliative care."
Key Elements of Success
Measures of Program Success
"Collaboration and partnership. Education and awareness. To be able to work as teams." Bomba suggests that these are all elements of the Initiative development process. "There is high visibility leadership involved in the community advisory group, but we also want to involve all segments of our community in the workgroups, being sensitive to cultural diversity." When that happens, the Initiative will have taken hold.
"We at Blue Cross recognize that this initiative has the potential to improve the quality of life for the community," Bomba says. "If you look at our mission and core values, and go back to the original mission of Blue Cross being a not-for-profit organization, you will see that this initiative fits the not-for-profit mission of reaching out to the community."
"Our CEO recognizes the need to improve the quality of life and the health status of the community. Traditionally health care was delivered solely for acute care; however, managed care introduced the concern for promoting wellness. We must do better. The future lies in adding improved management of chronic disease, and improved palliative care and end-of-life care. We, as a community, are just beginning to recognize this need."
What I Wish I ’d Known ...
"It takes a lot of work and time. In the country right now, there’s such a disconnect between what people want and what we’re providing in good end-of-life care. And there is really a desire for this to happen. People are interested in collaboration. They need leader-ship and they need to have a part in doing this."
"If we don’t move now to improve quality of end-of-life care, we will be the recipients of what we do or don’t do."
A new BCBSRA program offers comprehensive, coordinated social and support services for children with progressive, life-threatening illnesses and their families. The program, called CompassionNet, is administered through Genesee Region Home Care. Under CompassionNet, a case manager may approve coverage for services that the child or family may need through the course of the child’s illness—even if those services are not a typically covered benefit. Services are covered whether the outcome is cure, remission or death.
“Families insured by BlueCross already enjoy access to excellent medical care if a child becomes very ill,” says Pat Heffernan, president of Genesee Region Home Care. “But CompassionNet will also assure that a child undergoing chemotherapy can get a wig, or a sick child’s brothers and sisters can get counseling, or parents can get respite when they need it.”
Through CompassionNet, children may receive covered services from the time of diagnosis throughout the course of their illness. The program differs from hospice care in two significant ways:
The CompassionNet case manager works closely with physicians and other health care providers, as well as with community-based service and support organizations to develop an individualized plan of care for each child and family that enrolls.
This descriptive summary is based on an interview conducted by Susan Butler with Patricia Bomba, MD, June 14, 2001.
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