Funding Sources

Palliative Care Programs
Beth Israel Deaconess Medical Center/
CareGroup
Lachlan Forrow

Executive Summary

Beth Israel Hospital and Deaconess Hospital, which merged in October 1996 to form Beth Israel Deaconess Medical Center (BIDMC), had each been strongly committed to improving the care of patients near the end of life. The 1995 results of the SUPPORT study, for which Beth Israel Hospital had served as a site, had demonstrated serious inadequacies in the care of patients with life-threatening illnesses. Survey results using Picker Institute instruments documented additional shortcomings in important dimensions of "patient-centered" care.

At the time of the merger, many pieces of a comprehensive palliative care program already existed, including a 15-bed inpatient hospice unit established at Deaconess Hospital in early 1996, an affiliated outpatient hospice system, and the region's largest pain center. Senior leadership enthusiastically encouraged initial efforts to build an overall palliative care program from these components, and the clinical staff welcomed them. But progress during the next two years was limited. Substantial organizational stresses related to the merger, major turnovers in institutional leadership, and a rapidly worsening financial environment—including unprecedented staff layoffs—required that top priority be given to programs that could directly improve the organization's fiscal stability. At the same time, the integration of BIDMC and several other institutions into CareGroup, a unified regional health care delivery system, brought new opportunities to plan and implement more effective palliative care across the continuum of inpatient and outpatient services.

With crucial and timely support through the Faculty Scholars Program of the Project on Death in America, BIDMC and CareGroup leaders made a renewed two-year commitment in 1999 to support the development of a comprehensive palliative care program. Most important was the provision of operating budget support for a full-time nurse and for .4 FTE (full-time equivalent) physician time to staff a new Palliative Care Consultation Service. Systems for careful documentation and evaluation of the impact of this Service, and of the entire palliative care program, upon patient-centered measures of clinical quality and upon finances were established. The continuation or expansion of palliative care beyond 2001 will depend on the results of those evaluations.

General Organizational Background and Current Context

Brief History of BIDMC and CareGroup

The Boston Jewish community founded Beth Israel Hospital in 1916 to meet the needs of a growing immigrant population. Deaconess Hospital, founded in 1896, had as its mission the support of Methodist deaconesses in caring for the city's residents. These independent, Harvard-affiliated academic medical centers were located within two blocks of each other in Boston's Longwood Medical Area. After they merged in October 1996, Beth Israel Deaconess Medical Center integrated all clinical and administrative operations into one organization, with a single board of trustees, a single chair or director of each clinical and financial or administrative department, and a single operating budget. BIDMC included 625 inpatient beds and 1,145 staff physicians serving more than half a million patients annually in and around Boston, with strong links to urban community health centers serving inner-city minority communities and to suburban medical practices.

At the same time that Beth Israel and Deaconess merged to form Beth Israel Deaconess Medical Center, BIDMC joined with Mount Auburn Hospital, New England Baptist Hospital, and several suburban Boston hospitals to form CareGroup. CareGroup was designed as a network that would bring important benefits to participating institutions and their affiliated physician practices through collaborative negotiation of contracts with insurers and suppliers and through streamlined information systems, referral systems, and other medical and practice management services. With BIDMC as its principal tertiary/quaternary academic hub, the CareGroup network included more than 14,000 employees, more than 1,800 medical staff members, and more than 1,500 acute and subacute beds. The network would serve the community through more than 60,000 annual discharges, more than 400,000 annual outpatient visits, and approximately 280,000 home care visits.

The three years following the BIDMC merger and the simultaneous formation of CareGroup brought enormous organizational change, even turmoil. There were challenges in integrating previously independent organizations, and external changes in health care financing created tremendous pressures. Financially, BIDMC encountered major operating losses after the merger, including an operating deficit of over $40 million in FY1999 alone, leading to unprecedented staff layoffs. The initial displacement of numerous senior administrative and clinical leaders, when many positions were consolidated, was followed by a second period of major leadership turnover. Since mid-1997, almost all top management positions within BIDMC have changed hands, within the administration and in the leadership of clinical departments, including medicine, surgery, psychiatry, nursing, and social work.

CareGroup has experienced analogous changes during the second and third years of its existence. Just two years after it began in 1996, CareGroup was restructured from a network of semi-autonomous institutions to a fully integrated corporation with a single operating budget and corresponding bottom line. After an operating surplus of nearly $28 million in 1997, its first fiscal year, CareGroup's financial position worsened considerably, with an overall operating loss of approximately $100 million out of a total budget of approximately $1.2 billion for FY1999. Like BIDMC, CareGroup saw major transitions in its senior leadership during this period. Twelve of 16 senior management positions changed hands during 1998–99.

Amid these organizational upheavals, it was difficult to develop any new clinical initiatives, like an enhanced palliative care program, that required the consistent support of leaders or the allocation of new financial resources. Nonetheless, we made important progress that built upon the programmatic strengths and organizational values of Beth Israel and Deaconess Hospitals. The growing documentation of inadequate end-of-life care, other U.S. institutions' success in improving its quality, and the increasing recognition that current care near the end of life was likely to be contributing to the medical center's financial difficulties all contributed to further progress.

Pre-Merger Beth Israel and Deaconess Leadership in End-of-Life Care

Both Beth Israel Hospital and Deaconess Hospital had been pioneers in palliative care before their 1996 merger. As far back as 1927, Palmer Memorial Hospital was established under the auspices of the New England Deaconess Association, dedicated to the care and treatment of cancer patients and other "incurables." In the early 1990s, Deaconess Hospital was one of the first sites for Decisions Near the End of Life, a program sponsored by the Kellogg Foundation and the Educational Development Center (EDC). Among the fruits of this program were a heightened institutional interest in end-of-life care and a published manuscript showing that regular ethics rounds in the Deaconess Surgical Intensive Care Unit led to fewer prolonged, ultimately futile, ICU stays, and improved both the quality of care and the hospital's finances (Holloran et al., 1995). In April 1996, Deaconess Hospital established a 15-bed inpatient hospice unit on its campus, as described below.

Beth Israel Hospital (BIH) brought its own record of leadership to the merger as creator in 1972 of the first patient's bill of rights, as a pioneer in DNR policies and procedures during the mid-1970s (Rabkin et al., 1976), as the location for Frederick Wiseman's widely acclaimed six-hour 1990 documentary "Near Death," and as one of five national sites for the landmark SUPPORT study. Suzanne Gordon's 1997 book Life Support: Three Nurses on the Front Lines reinforced Beth Israel's reputation for excellent care of patients with life-threatening illnesses by recounting the work of the BIH nursing staff in delivering personalized care to seriously and terminally ill patients on inpatient floors, in oncology, and in home settings.

Documentation of Need for Improvements in Patient-Centered End-of-Life Care

Organizational Pride Confronts Empirical Data: The SUPPORT Study

In 1988, Beth Israel Hospital had been pleased to be chosen as one of five U.S. sites for the five-year Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT), sponsored by the Robert Wood Johnson Foundation. Proud of its reputation for leadership in patient-centered care, most staff at the hospital expected the SUPPORT study to confirm Beth Israel's reputation for excellent care near the end of life. The November 1995 report of the results provided a stiff antidote to that organizational confidence. All five participating institutions showed severe shortcomings in end-of-life care, and Beth Israel was no better than the others in any important way. The shortcomings, documented exhaustively in various SUPPORT publications, included findings that:

• 38 percent of enrolled patients who died spent at least 10 days in an intensive care unit;
• for 50 percent of conscious patients who died in the hospital, family members reported moderate to severe pain at least half the time; and
• only 47 percent of physicians knew when their patients preferred to avoid CPR.

Beth Israel did not solve any of these problems during an intervention phase in which SUPPORT staff, including specially hired and trained clinical nurses, worked to improve communication and decision-making by providing timely and reliable prognoses to attending physicians; to elicit and document patient and family preferences and understanding of prognoses and treatment; to help plan pain management; and to convene family meetings and other discussions to facilitate care planning. Virtually all interventions involved individual patients, one at a time. The hospital did not undertake any institution-wide interventions, because of the need to follow a control group of patients within each institution.

While Beth Israel's staff accepted the overall validity of the SUPPORT study, they did not believe that the failure of the intervention phase meant that hospital-based efforts to improve end-of-life care were doomed. They concluded that efforts to transform such care would require institution-wide changes involving methods that the SUPPORT study's design had not permitted. Exactly what those changes should be, however, was far less clear.

Limitations in the Institutional Impact of the SUPPORT Results

Several features of the SUPPORT study's design and findings made them hard to act upon. As disturbing as the aggregate results were, BIH staff members who were directly involved in the intervention phase of the trial (myself included) had difficulty identifying, even in retrospect, specific cases involving clinical care contrary to the wishes or preferences of a patient or a patient's family or involving prolonged and avoidable suffering. For example, the stereotypical individual "horror story" of a SUPPORT patient, which was presumed to be common from the aggregate results, concerned a patient whose physician was ignorant of the patient's desire to avoid CPR, who spent a prolonged period in the ICU in the days leading up to death, and who often had moderate to severe pain during the terminal phase of the illness. But the nursing and medical staff who participated in the intervention phase believed that most prolonged ICU stays that culminated in death stemmed largely from ambivalence on the part of patients and families about accepting the terminal nature of the illness; it took substantial time for patients, families, and clinical staff to reach the consensus that a shift to comfort-oriented care was appropriate (Hiltunen et al., 1999).

In addition, the aggregate, institution-wide nature of the SUPPORT study's results did not indicate that specific individuals, clinical departments, or service units had particular responsibilities or opportunities for improving care. This contrasted with other data-driven quality-improvement efforts, such as those from the Picker Institute, in which patients' reports about shortcomings were directly linked to the clinical units where care had been delivered, and in which nurse managers and medical and administrative staff on those units who could do better in the future were identified and held accountable. Finally, the fact that no site in the SUPPORT study had done any better than BIH left uncertainty about the extent to which the shortcomings could be corrected within a single institution. The problems suggested a need for broader social change in the way patients, families, and clinical staff approached life-threatening illnesses in general and the prospect of death in particular.

Nonetheless, in the wake of the SUPPORT study, I had encouraging initial discussions with BIH leaders about developing and implementing an institution-wide effort to improve end-of-life care in late 1995 and early 1996. Hospital administration put this effort on hold before formal activities could begin, however, as plans for the merger with Deaconess Hospital became serious in the first half of 1996. The discretionary funds for a new initiative, which were tentatively identified in late 1995, were no longer considered available by mid-1996, primarily because transitional costs of the merger were anticipated.

The Picker Institute and Broader Institutional Quality Issues

Dr. Thomas Delbanco, chief of BIH's Division of General Medicine and Primary Care, founded the Picker Institute in 1987. Started as the Picker/Commonwealth Program for Patient Centered Care, the organization was launched through support from Harvey Picker, whose company, Picker X-Ray, invented the CAT scan, and from the Commonwealth Fund, a private New York-based philanthropic institution. Picker began by investigating discrepancies between routine assessments of patient satisfaction, which are generally high in the health care industry, and reported patient experiences that often suggested fundamental flaws in the quality of care. For example, although half of all patients in the SUPPORT study reported pain, and moderate to severe pain near the end of life was frequently reported by patients or their families, only 15 percent of patients with pain expressed dissatisfaction with its control, perhaps reflecting a reluctance to criticize care and a fatalism about the inevitability of pain, which is unnecessary in light of modern pain management techniques (Desbiens et al., 1996).

Building from focus groups of patients that identified core "dimensions" of "patient-centered care," Picker developed a standardized method for surveying patients after their discharge from U.S. hospitals, in which patients were asked to describe, rather than rate, the care they received. The Picker Institute, which was incorporated as a nonprofit affiliate of Beth Israel Hospital in 1994, currently provides patient-survey services to more than 400 health care organizations. Twenty-five dimensions of care comprised of 138 questions from Picker Institute adult and pediatric questionnaires have been approved as clinical measures for the ORYX initiative of the Joint Commission on Accreditation of Healthcare Organizations (JCAHO). The Veterans Administration has adopted Picker surveys as its national standard, with more than 250,000 veterans surveyed since 1994.

Although Beth Israel had begun using early Picker instruments to assess quality of hospital care by 1989, organization-wide attention to Picker "scores" was heightened dramatically in 1997. Through the Massachusetts Health Quality Partnership, a coalition of insurers and business and professional groups, 58 of Massachusetts's 76 acute care hospitals agreed to provide a random sample of recently discharged patients for Picker surveys. Results from surveys early in 1997 would be confidential, with each institution receiving its own scores together with blinded results from other participating hospitals. The 1998 scores would be distributed in the same way at first, but unblinded scores would be made public later and widely disseminated, allowing open comparisons among institutions.

The BIDMC–Picker results in early 1997 attracted immediate and intense attention throughout the organization. They showed that BIDMC's results were no better than the Massachusetts-wide average on multiple dimensions of care. Within selected dimensions of care, such as "continuity and transition" from the inpatient setting to subsequent outpatient care, BIDMC's results were worse than the statewide average. These results challenged the organization's self-image as a national leader in compassionate, patient-centered care at least as powerfully as any of the SUPPORT results. For example, despite Beth Israel's proud pioneering role in creating the first hospital patient's bill of rights, the Picker survey showed that BIDMC was ranked only average among participating Massachusetts hospitals regarding "respect for patients' values, preferences, and expressed needs," with 16 percent of patients reporting problems of this kind.

Perhaps more important, the Picker results seemed to have clear and direct implications for quality improvement activities, in striking contrast to the uncertain implications of the SUPPORT results. In this regard, four fundamental differences between the Picker and SUPPORT results stand out. First, although both studies were "comparative," the Picker findings demonstrated distinct differences among institutions, strongly suggesting that change within an institution could lead to better results in the future. Second, the Picker findings for each institution were linked to the specific clinical units where patients had received care; different BIDMC units had different scores. This provided accountability so that nurse managers and others could improve their units' performance. Third, the Picker surveys would be repeated at regular intervals, so that improvements in performance—or the lack of them—by individual units and by the medical center as a whole would become evident over time. Finally, the knowledge that 1998 Picker scores would be publicly released provided a powerful incentive for everyone from the leaders of the Board of Trustees on down to achieve as much positive change as possible in a short period of time, before a large institution-by-institution table was published in the Boston Globe.

1996–1998: Forward Steps and New Hurdles

Creation of the Palliative Care Center (1996)

While Beth Israel Hospital was grappling with the implications of the SUPPORT study in late 1995, nearby Deaconess Hospital was planning for improved end-of-life care of its own. The chief landmark in the development of today's BIDMC palliative care program was Deaconess's creation of its 15-bed inpatient Palliative Care Center in April 1996. In part because the Decisions Near the End of Life Program had stimulated institutional awareness of end-of-life care, hospital leaders wanted to explore ways to meet patient and family needs more effectively and less expensively than in the hospital's acute care beds. In this exploration, Dr. R. Armour Forse, director of the Surgical Intensive Care Unit, played a crucial role. He had learned the importance of a formal palliative program during his training at Canada's Royal Victoria Hospital, an internationally renowned leader in the field. Deaconess leaders spent over a year assessing the possibility of contracting with HealthCare Dimensions, a local hospice organization, to organize an inpatient hospice unit in the hospital's Palmer Building.

The average number of deaths per year at Deaconess Hospital at this time was approximately 350. To weigh the need for inpatient palliative care, the hospital conducted two "demand analyses" in early 1995, surveying all Deaconess inpatient units. The data from the assessments were inconsistent. In January 1995, of 225 patients surveyed by non-clinical staff, we identified 35 as having life-limiting disease, only three of whom we identified as being appropriate for admission to a palliative care unit. The following month, other staff, including Dr. Forse and a hospice nurse, surveyed 263 patients, identified 19 of them as being appropriate for admission to a palliative care unit, identified another 60 as patients who would benefit from a palliative care consultation, and identified nine more as needing palliative care at home. The combined data from these two analyses suggested that a 12- to 15-bed inpatient palliative care unit might be justified by the needs of Deaconess inpatients.

A Deaconess Hospital committee charged with evaluating the proposed Palliative Care Center identified the following pros and cons:

"Opportunities"

• Coordinate palliative, clinical, teaching, and research activities
• Provide integrated continuity of care through an interdisciplinary team of health care professionals and volunteers
• Increase revenue through rental income from HealthCare Dimensions, the hospice organization
• Decrease variable costs by reducing the length of stay
• Add convenience and other benefits for patients who could stay in a familiar inpatient environment
• Use the expertise of HealthCare Dimensions to provide skilled staff
• Develop a cooperative model between Deaconess and HealthCare Dimensions for family support and bereavement

"Concerns"

• HealthCare Dimensions needs an average daily census of nine patients to break even financially
• Referral mechanisms to promote effective patient flow need to be developed
• Competition for space on the Deaconess campus

Given the discrepancy between the January and February 1995 inpatient surveys, the Deaconess Hospital financial staff needed to anticipate the consequences of changing the care of current inpatients. According to one estimate, a 12- or 13-bed occupancy derived entirely from Deaconess inpatients could "save" 2,792 inpatient days. At a conservative estimate of $150 in variable costs saved per day, the medical center would reduce its costs by $400,000 by transferring inpatients to a more appropriate setting.

In April 1996 Deaconess Hospital and HealthCare Dimensions signed a contract establishing a 15-bed inpatient hospice in the hospital's Palmer Building. In compliance with Medicare hospice regulations, this unit was managed and staffed by HealthCare Dimensions, rather than by Deaconess personnel. HealthCare Dimensions paid annual rent for the space and was able to admit and care for patients qualifying for inpatient hospice services, while avoiding many administrative and financial burdens of creating its own inpatient hospice facility. Deaconess Hospital agreed to provide all routine inpatient services for a base per diem rate, including pharmacy services, meals, housekeeping, and laundry. The hospital also agreed to ensure that adequate facilities were available for flexible visits by families, including overnight stays.

As a result of this contract, Deaconess Hospital now had an on-site hospice unit to which acute care inpatients who were too ill to go home could easily be transferred. From an administrative perspective, patients were "discharged" from Deaconess Hospital to HealthCare Dimensions. Deaconess hoped that these patients and their families would experience a high degree of continuity in care during the transition from acute to palliative care, since the "transfer" actually involved only a change of floor or building on the hospital campus. In addition, patients and families would have the broad benefits of hospice care, including bereavement services for family members. Deaconess also counted on some reduction in the number of prolonged stays that significantly exceeded Medicare DRG reimbursement, while acknowledging that objective evidence that this would ensue would be difficult or impossible to obtain. The financial staff calculated that an average daily census of nine patients would produce enough money to cover the hospital's costs of providing care on the unit.

Since 1996, more than 1,000 patients have received care on the unit, with a mean length of stay of just over 20 days but a median stay of only nine days. Approximately 20 percent of patients have died within three days of admission. The vast majority of patients have died on the unit. A small fraction have been able to return home for their terminal care.

A relatively consistent average daily census of greater than nine patients (recently 11.5 patients) has resulted in an operating surplus for the unit. But the fact that the unit remains the only inpatient facility of its kind in Massachusetts has caused an unexpected, sometimes problematic, pattern of referrals. Up to 75 percent of referrals in some months have come from acute care hospitals, with half or more than half coming from outside of BIDMC. In addition, patients transferred to the PCC from other home hospice organizations have transferred their Medicare hospice benefits to HealthCare Dimensions upon admission. Because Medicare regulations require that a certified hospice provide at least 80 percent of its patient-care days in a home setting, and because a substantial number of the Palliative Care Center's patients receive no home care through HealthCare Dimensions, many inpatient PCC days are not offset by any preceding home hospice days. That has at times required HealthCare Dimensions to refund to Medicare part of the revenues the organization received for inpatient hospice care. In the future, this may be addressed in part through separate contracts with other referring hospice organizations for inpatient PCC hospice care within the referring hospice's Medicare benefit.

One primary financial benefit of the PCC that BIDMC hoped for was the reduction in acute care inpatient stays, beyond DRG reimbursement, for terminally ill patients. No systematic assessment of the extent to which this has actually occurred has yet been undertaken.

Creation of a BIDMC End-of-Life/Palliative Care Working Group (1997)

Dr. Joanne Lynn's presentation at medical grand rounds in January 1997, as part of the BIDMC-JAMA "Clinical Crossroads" series, helped spark renewed efforts to address the inadequate care that had been documented by the SUPPORT study. With the support of Dr. Jennifer Daley, co-editor of "Clinical Crossroads," who was at the time also BIDMC vice president and medical director for health care quality, a team from BIDMC joined the Institute for Healthcare Improvement (IHI) Breakthrough Series Collaborative on Improving Care Near the End of Life in July 1997. Team members included Dr. Forse, surgical ICU director; Marjorie Wiggins, director of nursing with oversight responsibility for the inpatient hospice; and me, a general internist and director of the medical center's Ethics Support Service. Through individual meetings with nurse managers on every inpatient unit and with other medical, nursing, social work, and pastoral staff, we formed a broad interdisciplinary network of nearly 50 staff members interested in improving end-of-life care, and a Palliative Care Working Group of 12 to 15 people began to meet monthly to plan activities. A smaller group led by Wiggins and me met weekly.

By August 1997, a detailed analysis of existing programs was prepared, identifying these building blocks of a comprehensive BIDMC/CareGroup palliative care program:

1. The 15-bed inpatient Palliative Care Center described above
2. Affiliation with HealthCare Dimensions, the largest outpatient hospice provider in the region, which had become a wholly owned CareGroup subsidiary through consolidation of the institutions affiliated with CareGroup
3. The largest pain management center in the region, including a chronic and cancer pain program, with more than 8,000 patient visits annually
4. A Division of Oncology whose director, Dr. Lowell Schnipper, served as head of the End-of-Life Task Force of the American Society of Clinical Oncology
5. The second-oldest home care program in the region, with more than 350,000 visits annually
6. The BIDMC Patient/Family Learning Center, whose recent focus groups of families of patients who had died at BIDMC led to a new initiative providing hands-on instruction to other families in the technical skills they need to keep their loved ones at home
7. The Center for Alternative Medicine Research, directed by Dr. David Eisenberg, which had documented in two recent studies that approximately 70 percent of BIDMC oncology patients and approximately the same number of HIV patients use alternative therapies for symptomatic or curative goals. (Fairfield et al., 1998).

These resources, however, were not being coordinated. Working Group members agreed that all of the pieces of a comprehensive palliative care program would be in place with the addition of an inpatient Palliative Care Consultation Service. In September 1997, a letter of intent was submitted to the Robert Wood Johnson Foundation requesting support for such a service under the foundation's new program, Promoting Excellence in End-of-Life Care. The Service would come under the auspices of a proposed BIDMC/CareGroup Center of Excellence in Palliative Care. Dr. Mitchell T. Rabkin, CEO of CareGroup, pledged $225,000 in new institutional funds to supplement the requested $450,000 in RWJ support. Unfortunately, BIDMC's proposal to RWJ was not successful, nor was my January 1998 application to the Faculty Scholars Program of the Soros Foundation's Project on Death in America.

The process of preparing the unsuccessful RWJ and Soros/PDIA applications nonetheless had the vital benefit of bringing Working Group members together to formulate an overall mission and vision statement and program goals for BIDMC/CareGroup palliative care, with input and subsequent endorsement from both BIDMC and CareGroup leaders. The statement and goals (Table 1) have remained essentially unchanged since their adoption in 1997.

Program Goals:

1. To provide prompt, interdisciplinary, and comprehensive palliative care consultation services that meet the needs of BIDMC patients and families who confront life-threatening or life-limiting illness, and that enhance the clinical excellence of physicians, nurses, and others who are responsible for their care.
2. To provide educational programs that create and sustain palliative care knowledge and skills of the highest order throughout the BIDMC and CareGroup communities.
3. To create systematic programs throughout CareGroup that will transform the quality of care that patients and families receive near the end of life, sharing ideas and achievements with the communities we serve and with others working in this field, locally, nationally, and internationally.
4. To conduct research that strengthens and expands the knowledge needed to improve palliative care.

The IHI Breakthrough Series (1997–1998): Limited Immediate Results

Tangible results from BIDMC's involvement in the 1997-98 IHI Breakthrough Series Collaborative were disappointing. One of the first goals chosen, given the disturbing SUPPORT findings of inadequate pain control, was to improve the documentation and results of pain management on selected inpatient medical and surgical units where most hospital deaths occurred. However, leading physicians and nurses in the ICUs, where half of all inpatient deaths take place, did not perceive serious shortcomings in pain control on their units, where most gravely ill patients were heavily sedated. A subsequent Harvard-wide study of patient and family satisfaction with ICU care, which included four ICUs at BIDMC, revealed such a high level of satisfaction in the baseline phase that it was difficult to design any quality improvement strategies to achieve better outcomes. This confirmed for ICU directors at BIDMC that patients and families preferred prolonged ICU care in the face of otherwise terminal illness, and that the ICU problems that the SUPPORT study documented would have to be reduced by addressing patient and family expectations for care, and attitudes toward death, long before patients reached an ICU.

Initial steps to encourage nursing staff on one of the general medical units, with nearly 100 deaths annually, to record pain as a fifth vital sign by documenting the frequency of pain levels greater than five on a 10-point scale found fewer than 5 percent of patients with levels that high, a percentage so low that the staff did not consider a major unit-wide change in pain assessment to be worthwhile. At about the same time, Picker survey results showed that BIDMC's results for "physical comfort" were considerably better than most Massachusetts hospitals. Higher institutional priority was given to improving clinical care in other areas, where BIDMC's Picker scores were average or below.

More progress was made in efforts to improve staff education. Nearly 200 BIDMC clinicians, primarily nurses, participated in day long educational programs related to palliative care, including pain management, during 1997–98. A much larger number took part in shorter events, including enthusiastically received medical and surgical grand rounds presentations that described the mission and goals of BIDMC/CareGroup palliative care activities. In addition, we started weekly, hourlong palliative care rounds on two inpatient units, to which nursing staff and, occasionally, medical staff would bring a current case of a patient whose palliative care needs were not being adequately addressed. Staff took extensive notes during the sessions on a laptop computer, creating a log of nearly 100 cases. These sessions were useful for documenting in detail the need for new inpatient palliative care. They gradually built up staff members' interest in evolving palliative care activities and helped us understand in very concrete terms the problems that the Service would need to address. This approach also helped prevent us from duplicating services. In many cases, important patient or family needs that were not being met could be met through existing services, by the pain service or by referral to home hospice or to the Palliative Care Center.

Initial Commitment to Operating Budget Support for Expanded Palliative Care Services

Post-merger difficulties in integrating Beth Israel and Deaconess administrative and clinical activities continued to consume much of the time and energy of Palliative Care Working Group members who might otherwise have been available for additional program development. An additional serious barrier was the lack of any BIDMC staff position specifically funded to support further program development, although the IHI Collaborative had explained from the start that reliable progress would require at least one .5 FTE position.

Following the unsuccessful applications to RWJ and Soros/PDIA for extramural support, and in light of the documented gap between palliative care needs and services, the Palliative Care Working Group appealed to the BIDMC administration for operating budget support, explaining that there was little purpose in the group's continuing its work without it. BIDMC's senior vice president and chief operating officer, Robert Norton, immediately agreed to support the inclusion of approximately $125,000 in funds for the FY1999 budget, which would support .4 FTE in physician time (half of it already provided in FY1998 for leadership of the BIDMC Ethics Support Service), .4 FTE of a clinical nurse specialist to assist with a Palliative Care Consultation Service, and .4 FTE of administrative support. His decision was clearly based on his earlier central role in discussions about creating the Palliative Care Center. These had convinced him that expanded palliative care could improve both the quality of care and BIDMC's bottom line. Although the PCC had proven itself financially viable through direct hospice revenues, many of the bed days were filled by patients referred by other Boston-area hospitals, as already noted, and considerably more financial advantages seemed likely if more BIDMC inpatients were referred to the unit in a timely way.

Impact of Staff Changes and Increasing Institutional Financial Difficulties

Shortly after the FY1999 budget lines were approved in principle, BIDMC's overall financial projections for the fiscal year were revised significantly. BIDMC instituted an institution-wide "austerity budget," freezing new staff positions, erasing budget lines for new educational activities, and reducing hours for some nurses and other staff. After her hours were reduced by eight hours a week, the clinical nurse specialist who had spearheaded the highly successful palliative care education programs left for a full-time position at another hospital; that largely educational staff position was later discontinued. In late 1998 and early 1999, four champions of the palliative care initiative left to take senior positions at other institutions, including CEO Bob Norton, Surgical ICU Director Dr. Armour Forse, Director of Nursing Marjorie Wiggins, and Vice President and Medical Director for Healthcare Quality Dr. Jennifer Daley. Dr. Jim Reinertsen replaced the retiring Dr. Mitchell Rabkin as CEO of CareGroup, and many other senior leadership changes in both BIDMC and CareGroup followed.

During the mid-1999 development of the FY2000 BIDMC budget, the challenge of reducing an anticipated FY1999 operating deficit by nearly $40 million led to the first layoffs that Beth Israel personnel had experienced in decades, including the reduction of Social Work Department staff on inpatient services by nearly 50 percent.

1999: Some Breakthroughs

Reframing of Palliative Care Issues in the Context of Financial Problems

Given the medical center's financial plight, it became clear that requests for support of any new initiative, such as enhanced end-of-life care, would need to be justified not only in terms of improved quality but also—if not primarily—in terms of their net effect on the institution's fiscal stability. Meetings with BIDMC financial staff led to a rapid agreement to assess the financial implications of current end-of-life care.

The results were summarized in a March 1999 memorandum to senior BIDMC/CareGroup leaders:

1. For Patients Dying in Acute Care Beds. During FY1998, the 776 adult patients who died in acute care beds accounted for nearly $36 million in hospital charges during their final admission alone. Those "terminal hospitalizations" generated more than $20 million in "actual" (variable) costs but only $14.8 million in actual revenues, for a total contribution to the operating deficit of nearly $5.5 million for FY1998.
2. For Patients Dying under Hospice Care. Financial results of end-of-life care through the hospice services of HealthCare Dimensions were dramatically different, despite a year of its own institutional turmoil, including three executive directors in rapid succession. With 810 admissions and 19,347 patient-care days, HealthCare Dimensions incurred $3,600,000 in expenses and received $3,066,000 in patient care revenues. With the addition of $350,000 in charitable contributions, the HealthCare Dimensions operating deficit for the terminal care of 810 patients was $184,000. Given the improved organizational stability and infrastructure resulting from its successful retention of its latest executive director, HealthCare Dimensions predicted a balanced operating budget for FY2000.
3. Dangers (including Financial!) of Focusing on Financial Outcomes. The memo to BIDMC/CareGroup leaders stressed that "Efforts to approach this primarily as a 'cost-reducing' endeavor are likely to fail or even backfire." It acknowledged that many of the 776 patients who died in BIDMC's acute care beds had undoubtedly received technologically intensive, expensive life-prolonging efforts beyond what they or their families would have wanted if other choices, like world-class palliative care, had been available. But the memo warned that an effort to encourage any of the 776 patients and families to consider palliative care that hinted that the hospital wanted to save money would further erode already-fragile trust, would likely make decision-making "even more difficult," and could easily result in still longer ICU and other acute care inpatient stays.
4. Proposed Solutions. The memo offered two recommendations to address the problem:

a.

BIDMC should make a major institutional commitment to creating a comprehensive, first-class Palliative Care Program that will be attractive to clinicians, patients, and families. This program would build from on the existing inpatient hospice unit in the Palmer Building and the outpatient services of HealthCare Dimensions, the hospice provider owned by CareGroup. Support for a full-fledged BIDMC Palliative Care Consultation Service, already well advanced in planning, would soon be very important.

b.

BIDMC should provide support, in connection with CareGroup's Center for Quality and Value, for developing methods for tracking the quality, use patterns, and costs of care near the end of life. For assessments of quality, the Picker Institute had recently received two years of funding from RWJ to develop and validate patient- and family-centered instruments dealing with end-of-life care. The analysis that led to the successful establishment of the Palliative Care Center at Deaconess Hospital in 1996 remains valid: use a system-wide approach for cost analyses. For example, hospice or other palliative care services might be reimbursed below cost for some patients, but reimbursement might have been even lower had they remained on acute care floors.

Senior BIDMC and CareGroup leaders expressed strong support in principle for the memo's conclusions that care near the end of life is one of the few areas where the elusive goal of better quality at lower cost is in fact attainable and that the BIDMC/CareGroup could become a regional and national leader in this field. Initially, however, the pressing problem of BIDMC's projected $40 million deficit for FY1999, which demanded reduced direct expenditures and increased direct revenues, meant that the administration could not immediately translate support in principle into operating budget support for enhanced palliative care.

Crucial New Support from the Soros/PDIA Faculty Scholars Program

In reapplying to the Soros/PDIA Faculty Scholars Program, I included a letter of support from Dr. Reinertsen, CEO of CareGroup, that summarized the analysis and conclusions of the memo described above. I also included a letter from Joyce Clifford, BIDMC senior vice president of nursing, stating that if I were chosen then BIDMC would guarantee its original FY1999 commitment of $125,000 per year in operating support through FY2000 and FY2001. With my selection in April 1999 as a PDIA Faculty Scholar for 1999-2001, the combined funds from BIDMC and PDIA allowed the creation for FY2000 and FY2001 of a new full-time position for a clinical nurse specialist to serve as the hub of a Palliative Care Consultation Service, a budget line supporting .4 FTE physician time on the Service, and slightly expanded administrative assistance. During the budgeting process, it became clear that, without the prior written commitment from Joyce Clifford, who had since retired, in the Soros/PDIA application, approval of the palliative care budgets for FY2000 and FY2001 would have been extremely unlikely. No institutional financial commitment existed beyond the end of FY2001. Continuation of any operating support for palliative care services would depend on a clear demonstration of their quality and cost implications.

In addition to its crucial role in ensuring funding for the first two years of an inpatient Palliative Care Consultation Service, my selection as a 1999-2001 PDIA Faculty Scholar supplied other major boosts to the palliative care efforts. Palliative Care Working Group members were reenergized. Internal organizational credibility was increased by the implicit Soros/PDIA endorsement. In the summer of 1999, the Working Group sought and obtained a small grant from the Kenneth B. Schwartz Center to develop reliable systems for providing information about bereavement to family members of BIDMC inpatients who had died and for contacting them afterward to offer referrals for further services. In the fall, Iris Cohen, a member of the Social Work Department, successfully applied for the new Soros/PDIA Social Work Leadership Development Award, receiving two years of support for training social workers and physicians to work with patients and families in establishing patient-centered care plans for patients with life-threatening illnesses.

BIDMC Palliative Care Center Featured in PBS Broadcast

Unexpected and invaluable new support for BIDMC palliative care arrived when the weekly PBS broadcast Religion and Ethics Newsweekly chose the Palliative Care Center for a June 1999 story on how end-of-life care could be life-affirming for patients, families, and clinical staff. We showed copies of the seven-minute video, which followed three PCC patients, to senior BIDMC and CareGroup leaders and trustees. They saw more vividly than in any memo that excellent end-of-life care could inspire internal and external organizational pride. Two subsequent issues of the medical center's monthly publication, Our News, featured the Palliative Care Working Group's efforts. We regularly incorporated the video in many other presentations and conferences.

2000–2001: Implementation and Evaluation of the Palliative Care Program

With the hiring of a full-time nurse practitioner supported by attending physician staff, the long-sought BIDMC Palliative Care Consultation Service was launched in February 2000. Its planning had built upon knowledge gained from palliative consultation services established elsewhere, including those at Massachusetts General Hospital, Mount Sinai Hospital and Beth Israel Medical Center in New York, and the University of Pittsburgh, and upon additional guidance from the network of Faculty Scholars in the Project on Death in America. We developed four components of a comprehensive approach to palliative care.

1. Early Identification of Inpatients with Potential Palliative Care Needs. Beginning with a pilot program on one medical unit in November 1999, the unit's nurse manager reviewed all admissions with medical house staff and nursing case managers each day, asking them to identify any patients for whom death within the next 12 months would not be a "surprise." This approach, used successfully by PDIA Faculty Scholar Dr. Neil Wenger on several inpatient units at UCLA, identified patients who would be the primary targets of proactive outreach efforts by the consultation service and who would also form a cohort to be tracked for evaluation.

2. Outreach by the Palliative Care Consultation Service. In addition to responding to any spontaneous requests for palliative care consultations, the Service's nurse practitioner and attending physician would seek out nursing staff, house staff, and attending physicians and ask whether there were any palliative care needs that could be addressed through informal or formal consultation. They would place a brochure describing the range of BIDMC palliative care services—including formal consultation, hospice and home care services, and bereavement programs—in the medical chart. (Dr. Wenger found at UCLA that the placing of even a single page, designed to spark thinking about overall goals of care, led to a dramatic increase in chart documentation of discussions of care goals, advance directives, and DNR status.) Adapting a simple format used by Dr. Diane Meier and her colleagues at Mount Sinai, the Service would document in its own records any formal or informal recommendations made to clinical staff, as well as a subjective sense of the extent to which staff implemented recommendations. Specific issues arising from any of these interactions with each unit's clinical staff then become the basis for regular in-service training of nursing staff and for discussions with house staff during rounds by attending physicians.

3. Tracking Use and Cost. With support from Dr. Risa Burns of the CareGroup Center for Quality and Value, a system was established in November 1999 to track the use, costs, and reimbursements, both prospective and for the preceding 12 months, for all patients identified as potentially needing palliative care services. Use included admissions, emergency unit visits, length of stay, medication, laboratory services, and the like. Three months of data collection before the inpatient consults began would provide baseline data for later comparisons. These data, which would be generated automatically through standard medical center information systems, would be linked to additional information about BIDMC/CareGroup hospice and home care use that required allocated time from an administrative assistant and staff in those clinical areas.

   Subsequent analyses would attempt to discern whether formal or informal engagement of the Service was related to any changes in use, cost, and reimbursement. For example, favorable trends in referrals to CareGroup's hospice organization, HealthCare Dimensions, could increase the average length of stay on hospice, with financial benefits to HealthCare Dimensions and thus to CareGroup's bottom line, which could in turn be used to justify continued investment in inpatient consultations.

4. Patient- and Family-Centered Quality Measures. As the March 1999 memo to BIDMC/CareGroup leaders emphasized, the most important justification for enhanced palliative care is not financial benefit but improved quality of care. In contrast to the well-established Picker instruments used in evaluating acute hospital care, the lack of a proven, easily used instrument with which to elicit systematic reports from patients and families about their experiences in end-of-life care, with results that can be readily incorporated into quality-improvement activities, continues to be a major gap for all institutions across the United States. Through its close affiliation with the Picker Institute, BIDMC has already begun to serve as the primary hospital site for the pilot phase of the development and testing of a Tool Kit of Instruments to Measure End of Life Care (TIME), sponsored by the Robert Wood Johnson Foundation. This will ultimately include an after-death survey instrument that will examine the patient's overall quality of life; patient and family experience in decision making with health care providers; symptom management; and family-centered reports about the quality of care. Additional instruments will cover bereavement services, the psychological distress of family members, family experiences before and after the patient's death, and spirituality and transcendence. The staff members leading this project at Picker and at Brown University, under Dr. Joan Teno, plan to develop a resource guide and computer software to facilitate use of these tools for evaluation and quality improvement. BIDMC will be deeply involved in these efforts.

Conclusions

The ups and downs of efforts to enhance palliative care at Beth Israel Deaconess Medical Center since 1995 provide several important lessons:

1. Hospital leaders' enthusiastic support for a new program, which began in late 1995 and was often reaffirmed, is inadequate without financial resources.
2. Organizational stresses accompanying a merger can create extremely high barriers to program development, but persistence in promoting the program can ultimately succeed despite frequent major changes in organizational leadership.
3. External support, like that provided to BIDMC through the Faculty Scholars Program of the Project on Death in America, can be crucial not only directly but also by mobilizing internal resources.
4. When institutions face financial difficulty, no new program is likely to succeed unless its potentially favorable financial implications are highlighted. Yet, a primary focus on financial measures of success is extremely dangerous.
5. Although quality assessment in the field of end-of-life palliative care is only in its infancy, in the long run, measurable improvements in quality are likely to provide the strongest justification for continued support of a clinical program.

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BIDMC Palliative Care Program Demographic Information

Number of Patients Admitted to Inpatient Hospice Unit:

1996:					124
1997:					268
1998:					305
1999:					325

Gender: (average 1996-98)

Male:				50.1%
Female:				49.9%

Age Distribution: (1996-98)

18-64:				33%
65-74:				24%
>74:				43%

Insurance:

Medicare:				74%
Medicaid:				6%
Commercial:				20%

Income/Expenses (FY1999):

Figures represent total revenue and expenses for HealthCare Dimensions, and therefore includes both home hospice and inpatient palliative care.

Net Patient Service Revenue:			$3,086,526
Other Operating Revenue:			$     12,528
Net Fundraising Revenue:			$   231,140
Total Revenue:			$3,330,194
Total Expenses:			$3,527,572
Total Gain/Loss:			($197,378)

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BIDMC Palliative Care Program: Grant Support

Project on Death in America:
July 1, 1999-June 30, 2001                               $76,500/year x 2 years
Support for Dr. Lachlan Forrow's work as a 1999-2001 Faculty Scholar, with primary focus on developing BIDMC Palliative Care Programs.

Project on Death in America:
January 1, 2000-December 31, 2001                 $30,000/year x 2 years
Support for the work of Iris Cohen, LICSW, in the Social Work Leadership Development Award program, developing interdisciplinary education for medical and social work personnel and assisting the BIDMC Palliative Care Program.

Kenneth B. Schwartz Center:
October 1, 1999-September 30, 2000                 $20,000
Support for development of bereavement activities within BIDMC Palliative Care Program.

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The Harry R. Horvitz Center for Palliative Medicine, The Cleveland Clinic Foundation
Declan Walsh

Executive Summary

The Cleveland Clinic is a large multispecialty group practice. The clinic identified the need for a palliative care program, and the program started in 1987. The structure of hospice care as Medicare defines it is inadequate for incurably ill patients. Palliative medicine implies physician expertise in the areas of: communication, decision-making, management of complications, symptom control, care of the dying, and psychosocial care.

Since 1987, the program has established a hospital consultation service, outpatient clinics, acute care inpatient service, hospice/home care service, an acute care palliative medicine inpatient unit, which evolved from our acute care inpatient service, and an inpatient hospice facility. We have introduced a new component approximately every 18 months since the program began. These activities have considerable implications for staffing, the management of change, and the competition for scarce resources within a shrinking health care budget.

For staffing, the program has turned to specialized attending physicians, using a multidisciplinary approach to enhance the role of nursing. The major budgeted areas are the acute care Palliative Medicine unit and the hospice/home care service. To develop an intellectual basis for the practice of palliative medicine, we have made a commitment to systematic research and education. Senior leaders within the Cleveland Clinic Foundation, including the Cancer Center, have consistently supported the program.

The major lessons learned during program development have been: to focus on the quality of patient care; to pursue research and education; to secure institutional commitment to program development; to establish a businesslike approach; to defend the program's budget and personnel during this difficult period in health care; and never to promise anything that you do not deliver.

The Cleveland Clinic Foundation

The Cleveland Clinic Foundation is a private nonprofit group practice founded in 1921. It integrates clinical and hospital care with research and education. There are 850 full-time salaried physicians representing more than 100 specialties and subspecialties. The main hospital has almost 1,000 beds. Last year 1.2 million outpatient visits and 50,000 hospital admissions occurred in the foundation's two main hospitals in Cleveland, Ohio, and Fort Lauderdale, Florida. Through a series of expansions, mergers, and acquisitions, the foundation has grown to include 10 community hospitals in the greater Cleveland area as well as 15 family health centers and a number of other specialized clinics and health care facilities, among them the Harry R. Horvitz Center for Palliative Medicine (Walsh, 1990). For administrative purposes, Palliative Medicine is a subsection of the Department of Medical Oncology within the Cleveland Clinic Taussig Cancer Center, which is located in urban Cleveland. There are no other palliative care programs in greater Cleveland.

The Philosophy of Palliative Care: Hospice or Palliative Medicine?

The conviction that the principles and practices of palliative medicine must be incorporated into the acute medical care system have governed our program (Walsh, 1994a). These principles and practices derive from the hospice model but have been modified to fit into mainstream medicine. A major deficiency of U.S. hospice care has been its separation from acute care structurally, administratively, financially, and philosophically. The initial impetus for hospice services was in part a reaction to deficiencies in health care. As a result, nurses and social workers have dominated U.S. hospice care administratively and philosophically, in contrast to hospice in the United Kingdom, where physician's leadership has been common. Indeed some U.S. hospice programs are antiphysician. Moreover, the structure of Medicare's hospice benefit excludes physicians from many hospice services. These influences have damaged the development of hospice and palliative medicine in the United States. Many hospices have been isolated from the medical community and from the acute care system, with late referrals and a short length of stay a major problem. Palliative medicine in this country is at least a decade behind that in western Europe.

We believe that hospice philosophy needs to be integrated into acute care and into the entire fabric of health care. This is the key difference between the concepts of palliative medicine and hospice. Providing hospice services, as defined by Medicare, is an important part of our program but does not define our philosophy or practice. Being part of the acute health care system, palliative medicine should be delivered in the same fashion as other health care services, judged by the same clinical, administrative, and financial standards, and held to the same level of accountability (Goldstein et al., 1996). We must also compete with other programs for resources, space, and funding. Health care in the United States is changing significantly under internal and external stresses. Program development in any area is fraught with difficulties and complexities, particularly when the field of medical endeavor—palliative medicine—is new. Yet postacute services for chronically ill elderly people will play an expanding role in palliative medicine as the U.S. population ages.

Mission Statement

The mission of the Palliative Medicine Program is to:

• Provide excellent care for patients with advanced cancer and their families throughout the illness and during the bereavement period.
• Advocate comfort, dignity, and choice for patients.
• Gain international recognition through clinical excellence, comprehensive research, and a commitment to education at all levels.

At the Cleveland Clinic Foundation, Palliative Medicine is an integral part of the Department of Hematology and Medical Oncology. The program provides multiple clinical services on a continuum of medical care, and patients can obtain access to it 24 hours a day, seven days a week. Primary medical care is provided, rather than a consultation model. Due to its multiple revenue streams, the program is financially self-supporting.

Clinical Competencies in Palliative Medicine

The development of palliative medicine is hampered because this discipline is not clearly defined. Based on our experience since 1987, we identify six components of clinical expertise as essential to palliative medicine. These not only define the practice but underpin the education and research needed to advance the field.

Communication

When disease is advanced, communication is often ineffective. The information imparted to patients and families is haphazard and disorganized. Miscommunication often results in pseudoethical problems, concerns about legal implications, and daily frustration due to clinical chaos in complex medical environments. Effective communication within the medical team is essential. Otherwise there is no plan of care. Indecision rapidly reaches patient, family, and nursing staff, with predictable results. In daily practice, better communication within the medical team(s), with the patient, and with the family and caregivers can improve this situation (Miller, Krech, and Walsh, 1991).

Decision-Making

Choices about care during life-limiting, complex diseases depend on effective communication (Stagno, et al., 2000). Decisions about the direction of care are difficult and dynamic. They require knowledge of the natural history and unpredictability of common illnesses and their complications. Options for care may cover a wide range, including aggressive interventions such as laparotomy, discontinuation of treatment, or sedation of the dying patient.

Management of Complications

Many common complications of advanced disease are predictable (Nelson et al., 2000a). For example, the common problems in advanced cancer can often be identified by the cancer's primary site, allowing a structured approach to its management if intervention is appropriate. Although many complications are everyday occurrences, few hospitals have devoted systematic clinical, educational, or research activity to their management. This stands in stark contrast to the excessive expenditures devoted to developing ineffective cancer therapies. The absence of well-defined and widely accepted protocols for managing such complications, like hypercalcemia, is a noteworthy deficiency of modern cancer care.

Symptom Control

Relief of symptoms in advanced disease is a primary responsibility of palliative medicine (Walsh, 1997; 2000). When an individual cannot be cured, sophisticated control of symptoms by pharmacologic and nonpharmacologic intervention becomes urgent. Because of the interplay between palliative medicine and acute care, we believe that all modern technologies that relieve symptoms, such as esophageal stents, should be used. Appropriate use of these interventions depends on excellent communication and decision-making. Under "low-tech" care at hospice, patients may inadvertently be denied "high-tech" interventions that relieve suffering.

Care of the Dying

Despite the predictability of many deaths in an acute care setting, death is often a chaotic and depersonalized process with poor communication, ineffective decision-making, and bad symptom control. As a result, many dying persons suffer unnecessarily. The essential responsibility is to decide whether a patient is in fact dying. Once this decision has been made many complexities of end-of-life care resolve themselves because decision makers choose among realistic care options. Palliative medicine offers ways to manage care of the dying while considering the needs of the care team and the family, and focusing upon the patient most of all (Miller and Walsh, 1991; Nelson et al., 2000b).

Psychosocial Care

In addition to the multiple physical symptoms associated with advanced disease, many patients and their loved ones suffer considerable psychosocial distress (Miller and Walsh, 1991). Beyond the common problems of anxiety, depression, insomnia, and the like lie many other stresses like financial difficulties or the disruption of long-term human relation