Innovations in End-of-Life Care
an international journal of leaders in end-of-life care

The Rise and Fall of a Palliative Care Program at a Community Hospital:
A Personal Reflection

Eugenia L. Siegler, MD, FACP

Introduction

Several years ago I directed a palliative care program at a community hospital. I worked with a wonderful group of people, and we thought that we did everything we could to be successful. We obtained external funding for several years from a non-profit group; we took great care to ensure administrative buy-in; we heard words of gratitude from patients, families, and health professionals alike; we presented posters at national meetings, gave Grand Rounds at other hospitals interested in creating programs like ours, and received congratulations from the Board of Trustees. We incorporated our work into the Continuous Quality Improvement (CQI) efforts of the hospital, and we liked and believed in our work and our mission. Nonetheless, by mid-2000, the program no longer existed, much to my enduring disappointment.

It is hard to justify an essay about a defunct program in a journal called Innovations, but I'm going to try. I will begin by describing the program and its philosophy, but I want to focus as well on the obstacles to success and the lessons that we learned from failure in the hope that my experience will be helpful to others now undertaking similar projects.

Description of the Program

Since the mid-1990s, the United Hospital Fund (UHF) has underwritten efforts to enhance hospital-based palliative care initiatives. Brooklyn Hospital Center received one of five UHF two-year grants to establish a hospital palliative care program based on pilot data it collected from a first, exploratory phase, also funded by UHF. The Principal Investigators (PIs) were Eliot Lazar, MD, chairman of the Department of Internal Medicine, and Brian Regan, PhD, vice president for Professional Services. I authored a significant portion of the applications and had primary responsibility for day-to-day operations of both phases of the project.¹

Brooklyn Hospital Center, a moderate-sized community teaching hospital, has two campuses, the larger one in downtown Brooklyn, and the other in central Brooklyn. It has a small core of full-time faculty who have medical school appointments, but most attending physicians are on the voluntary staff, and these doctors, who are in private practice, admit the majority of inpatients.

An Executive Committee composed of the PIs, representatives of the core hospital constituencies (nursing, ethics, social work, chaplaincy, among others), and myself recognized that we had to create a palliative care program from scratch. Although a pain specialist was on the faculty, there was no palliative care presence per se when we started. Moreover, none of the faculty, myself included, had formal palliative care training. Nor could we expect that the hospital would have the resources to hire a physician whose sole purpose was palliative care. We all learned "on the job" and considered this not a liability but an asset to the program, as it enhanced its replicability. Among other things, we wanted to show that if we could do it, anyone could.

Before creating our program, several of us (primarily Margaret Souza, CSW, the social worker, Alice Herb, JD, the hospital attorney ethicist, and I) conducted interviews, focus groups, and chart reviews to determine how best to introduce and deliver palliative care at the hospital. Physicians, nurses, and other staff expressed concerns about losing control over their patients; they favored neither an inpatient unit nor a palliative care consult team, which was viewed as a "death squad." On the other hand, although we had to respect the sensibilities of the staff, interviews and surveys documented that attendings and house staff often failed to understand what palliative care was, who would benefit from it, and how to provide it. We also found that staff failed to perceive patients' symptoms, emotions, and spiritual needs, and residents in particular lacked communications skills necessary to provide palliative care.

The Executive Committee realized that the program would have to recognize and address these deficits, while at the same time respecting the attending physicians' need for control. We did this not by forming a physician-run palliative care consultation team, but by creating a nurse-managed program that, like social work, ostomy care, or nutrition, would be one of the institutional services that the hospital offered.

Program Structure

The goals of Brooklyn Hospital's Palliative Care Initiative were to:

• Promote early identification of patients who need palliative care services.
• Enhance quality of those services by increasing accessibility and awareness of both medical interventions and non-traditional care.
• Improve communications between staff and patients, and among staff at all levels.
• Create stronger ties between hospital and community.

Although the program was housed within the Department of Internal Medicine, its keystone was a Masters' prepared nurse with palliative care experience, whom we called the Palliative Care Expert (PCE). Mary Drayton, RN, MSN, filled this full-time position for most of the project's duration.

The Executive Committee decided that in order for the program to succeed we could not wait for attending physicians or house staff to call for help; instead, we arranged for Utilization Review (UR) nurses to screen patients daily and notify us of those who might be appropriate for palliative care. The nurses placed a form in the chart informing the attending physician that the patient would be seen by the PCE unless the physician actively refused the service by calling the PCE's phone number. In this way, the default was the referral, exactly the opposite of a consult service. This was not so much an end run around the physician as a jump start. Once the PCE had seen the patient and had made an assessment, she called the physician for permission to initiate the plan of care; this step was essential to generate buy-in from the physicians and to acquaint them with the Palliative Care Initiative and all that it offered. The Committee was able to do this because Drs. Lazar and Regan, the co-PIs, were in a position to mandate the change. This happened, I feel, only because they were committed to the program and the hospital was small enough for them to insist that it happen.

The PCE offered advice to enhance patient comfort, assisted with obtaining advance directives, helped the team access other services like pain management, and worked with the part-time social worker in counseling patients and families. I provided backup, serving as physician authority to wheedle, cajole, or otherwise convince reluctant house staff and attendings to shift their focus away from a strictly curative to a broader outlook that included palliative care. I also assisted with geriatric management and wound care, helped attendings and house staff obtain advance directives, and, on rare occasions, took onto my service patients at the very end of life whose families wanted only comfort measures, but whose physicians were unable or unwilling to be the attending of record when the patient died. This was a part-time responsibility for me; the PCE performed the vast majority of the work and truly represented the program on the units.

When the process worked optimally, the PCE created and led an ad hoc "team" for each patient consisting of the attending, house staff, nurses, and other staff. This was the project's greatest advantage and challenge—it enabled us to provide services that would be welcome and utilized (because it recognized the primacy of the attending physician), but it necessitated creation of a new team each time. The PCE worked with those who were necessary to the well-being of an individual palliative care patient, but only rarely did the group meet together as a whole. Often the "team" members were not of her choosing, since the attending, nurse, house staff were already in place. Representatives from patient relations and pastoral care were helpful in fostering cooperation.

Physicians only rarely refused the service. Although throughout the program most referrals came from UR nurses, physicians themselves also asked for help from the PCE. Physicians were responsible for just over one-third of referrals, and UR for just under two-thirds. Staff nurses only rarely referred patients to the service.

Demographics and Diagnoses of Patients Served by the Program

The "default" process and the enthusiastic cooperation of UR nurses generated large patient volumes from the beginning. Overall during the 18 months when we tabulated data, there were 470 consults, 59 percent of which were women and 41 percent were men. Ages ranged from 21 to 91, with almost 20 percent between 81 and 90 years old. Most patients were from ethnic minorities; only 17.4 percent were white. Over half were African American, and 18 percent were of Caribbean origin.

The most common underlying diagnosis was cancer, but this represented fewer than 50 percent of patients. Cancer predominated early on in the program, but other diagnoses became more common as the program became better known.

Educational activities

In addition to providing palliative care to patients, the Palliative Care Initiative also offered a number of educational programs. These efforts attempted to address the residents' and attendings' discomfort with ethical/legal issues and communication across cultures. Although we felt that the best teaching occurred as we assisted at bedside with individual palliative care cases, we also provided more formal programs. These included:

• Ombudsman rounds. These took place monthly on four different wards—the ICU, the AIDS unit, and two medical floors. Here, physicians outside the palliative care project would lead case-based discussions together with the hospital attorney/ethicist.² Two of these physicians were from the voluntary staff. These rounds also provided cases for discussion at the hospital monthly ethics committee.
• Cultural Diversity Seminars. The hospital's catchment area (the Borough of Brooklyn) has enormous cultural diversity; members of the house staff are also from many different countries. During the second year of the project, we offered cultural diversity seminars approximately bimonthly. These took place at lunchtime and featured cuisine and speakers from different ethnicities including: Spanish-speakers; people from the former Soviet Socialist Republics; the Middle East; Western Europe; the Asian sub-continent, the Far East, and Africa; Afro-Caribbean and African Americans. The format was interactive, and all hospital personnel were invited. Attendees numbered usually between 50 and 75. Satisfaction surveys yielded consistently high ratings.
• Ethics Conferences. The hospital attorney/ethicist led monthly ethics noon conferences for house staff of Medicine, OB-GYN, and Family Practice.

What Did We Accomplish?

This was a demonstration project with a budget of $225,000 over two years, and we did not have a large amount of resources to devote to assessment. By the nature of our interactions with patients and families we knew that we had helped them, although we did not document this in any official way. We also had the impression that house staff were initiating end-of-life discussions earlier than they had before the program.

To measure the impact of the program objectively, we used the Hospice Quality of Life Index³ to assess both patient symptoms and nursing and attending physician perceptions of patient symptoms. The HQLI is a 25-item scale that assesses functional, spiritual, social, and financial domains. Although it was originally written to assess patient needs, we adapted it to assess providers' understanding of their patients' needs, as well.

For a year and a half, we administered the HQLI each month to five patient-nurse-physician triads. We measured data for 92 triads over this time period.⁴ We inferred several things from our results:

• Over time, nurses appeared to be more aware of the patients' psychological and spiritual states than physicians.
• Physicians consistently underestimated patients' emotional and spiritual resources.
• Pain management did not appear to improve over the course of the program.

I am not sure why there was such a discordance between physicians and patients and why nurses seemed to improve and physicians did not. We had several theories: 1) Nurses were more likely than attending physicians to have multiple experiences with the palliative care service and with the HQLI in particular; 2) nurses were more likely to come from the same ethnic groups as patients and may have been more comfortable talking about psychosocial and existential questions; 3) these areas are naturally a part of nursing's domain and nurses were more receptive than physicians to education about this domain from the palliative care personnel; 4) physicians appreciated the service that we provided and used it as an opportunity to actively abandon palliative care responsibilities to us. I suspect that all of these interpretations come into play, but I believe that the first two were the most likely reasons.

The failure to improve pain management was disappointing, but not surprising. Brooklyn Hospital's Palliative Care Initiative did not target pain specifically. JCAHO standards making pain the 5th vital sign were not in place; the pain management consult service was new, and despite our attempts to incorporate it and encourage its use, it was underutilized; and there were entrenched patterns of pain management (e.g., frequent use of meperidine) or lack of pain management that we could not overcome despite lectures, handouts, and bedside teaching. A CQI approach to pain management would have been more successful, and in retrospect, should have been built into the program from the beginning.

Obstacles to Success

Despite a subjective impression that we helped many people, we did not accomplish nearly as much as we would have liked to, even when the program was at its peak. We encountered a number of obstacles to success, some of which we might have overcome with time; and others which, I feel, might have proved intractable. These obstacles included:

• Limited pain management services. Pain management had a low profile in the hospital; at times housed within anesthesia, but usually a part of neurosurgery, it was never well integrated into palliative care, and infrequently consulted unless the PCE suggested it. A higher profile pain management service might have made the PCE's job easier, by validating hospital-wide that symptom relief merited attention, and by adding to the size of the palliative care service.
• Lack of involvement on the part of certain attending physicians. Our goal was to have physicians as members of the palliative care process, responsible for and directing patient care. Most physicians, especially the full-time faculty, worked actively with the program, and no plan of care was implemented without the permission of the attending physician. Some physicians, in particular those from surgery and a certain number of voluntary physicians, however, were more than happy to withdraw from the more difficult problems (negotiating advance directives, extubating patients at their or their proxy's request, for example) and let the palliative care providers do all of the work for them. We were pleased that these physicians welcomed us and what we were trying to do, but we were frustrated at times by our inability to show them that this was a gratifying and important part of medical care. In this sense, the program was a victim of its own success. After a year, the PCE was a very familiar and welcome sight on the units; the PCE, the social worker, and I came to realize that although we had increased staff awareness of patients' palliative care needs, we made it too easy for physicians to abdicate responsibility to us. Although most faculty worked with us and learned from us, it was more expeditious for the PCE or other palliative care personnel to meet with patients and families than to insist that the attending run the meeting with our help. We felt that we were making progress by the program's end (with the exception of the inevitable intractable ones), but not enough to give the staff the sense that they should and could provide palliative care on their own.
• Limited funding. An obstacle to every program, regardless of size.

The Barriers to Sustainability and Lessons Learned

What kept this program from surviving, and what have I learned as a result of my involvement in this program? These are difficult questions to answer, because they involve both process and personalities, but I will begin with the most likely reason for the demise of the program and then discuss contributing factors.

Simultaneous loss of key personnel
The hospital was unable to support the salary of our social worker when external funding ended. Nonetheless, even in the absence of outside funding, a less comprehensive but still active palliative care service remained. As the hospital's fiscal picture deteriorated, I felt that only a move elsewhere would offer opportunities for growth. Both the PCE and I left the hospital within several months of each other. Despite continued salary support for a faculty geriatrician and a PCE nurse, the program did not survive the near simultaneous loss of two key members. A new geriatrician was soon hired, but the PCE position remains unfilled, in large part, I think, because the hospital lacks the capital to support not just a salary, but a program.

Even a casual observer would attribute the program's demise to the loss of its most vociferous champions. I would not deny that our departure was the "proximate cause," but I believe that collapse need not have occurred—that a program is not doomed to failure when its founders leave. What we failed to do was ensure its permanence i.e., make it big enough, important enough, so indispensable to the hospital, so much a part of the woodwork that it had to continue, despite personnel changes. We had managed to institutionalize it, but not to internalize it, and without creating that sense of indispensability, we could not create a permanent program.

The question, then, is could we have? Or is there something about palliative care itself that resists implementation in a community setting? Many things might have helped:

• More time: Four or five years, instead of two, might have created greater stability.
• More money: External funding would have strengthened the infrastructure and provided more recognition.
• Larger program: This of course, requires more time and more money.
• Better timing: With every year, palliative care gains more recognition, publications, and acceptability nationwide. I suspect that had we started a few years later, professionals would have been better prepared to learn from us.

Physician passivity
As I discussed in the previous section, I think the lack of widespread physician involvement was a fundamental failure of the program and may have contributed to the program's demise. On the whole, the Palliative Care Initiative was accepted, welcomed, and appreciated. But its precepts were not internalized. So when the program halted, it was missed, but not so much that its remaining advocates demanded it be preserved. I do not think that this was a tragic flaw inherent in the nature of the PCE role; a physician-run consult service would also have encountered the same problem of passivity; and it may have had fewer consults, as well. Rather, I feel that the flaw lay in not ensuring that physicians and others be more a part of the process.

This may also have been a failure on my part. I was so interested in getting recognition for palliative care that I dared not rock the boat too much. The program had the necessary support from the administration, as evidenced by the authority of its PIs and the fact that the Utilization Review Nurse jump start was initiated by fiat. But geriatricians, as a rule, do not function from a position of strength, and I was no exception. Insisting that attending physicians play an active role in palliative care was more than I felt empowered to do. As a result, the program never got past "we can do it" to "you can do it."

No home for palliative care
Regardless of the size of the program, palliative care must have a name and a home. In a community hospital, where there will be little or no external funding, finding salary support safe from cutbacks may be difficult. This creates a disconnect between budget and name, as fiscal pressures may jeopardize salary support for a program like palliative care, which does not generate significant income. Because of budgetary pressures, we elected to hide the budget for palliative care even as we tried to enhance its visibility. When external funding ended, the PCE's salary line was moved to Utilization Review. Once the key personnel left, the salary support remained, but the program had no infrastructure in place to weather that loss.

As palliative care grows in stature and recognition, its proponents advocate an academic approach to its growth. This may not be suitable for all, especially those in smaller community hospitals, which will never be able to develop departments or attract sustained external funding. We advocated a grassroots approach to palliative care and encouraged staff to develop some degree of comfort with palliative care. I used myself as an example of a non-expert learning on the job, and I insisted whenever I spoke about the program to others that empathy, practice, and a willingness to read the literature were sufficient to provide good palliative care.

It is unrealistic to expect that most hospitals will be able to attract fellowship-trained palliative care specialists or support their salaries. Even if one can be hired, provision of palliative care is a task essentially impossible for one individual to accomplish. What made our program feasible was its underlying assumptions that: 1) palliative care was no different from other hospital services, which were provided as needed, not on the basis of physician-physician consultation; and 2) all physicians and staff must understand and provide palliative care—that even in the absence of formal training, anyone willing to learn and practice could offer this most fundamental service. I think that our program's greatest contribution was its very existence. And although it did not survive, I am convinced that other community hospitals can improve on the model and make it work.

I still believe in this model. I need and want access to specialists for any problem. But the need for palliative care should be viewed as one might view hypertension or emphysema, not left main coronary artery disease. Its provision should not and cannot be left exclusively to the experts. Rather, it should be a commonplace skill; problems should be recognizable and treatable by the generalist in all but the most complicated cases. I also believe that the advanced practice nurse model offers advantages over the more common physician consultation model. Nurses can collaborate effectively with physicians, who can then remain as primary providers for their patients. Much of palliative care is more suited to nursing practice, and nurses may be fundamentally more comfortable with "comfort" than physicians are.

The palliative care initiative was a popular and widely utilized program. Were I able to start all over again, I would make the following adaptations:

• Make adequate pain relief an explicit goal. We were so focused on communication and recognition of palliative care that pain control remained implicit, not explicit. In retrospect, I would have measured adequacy of pain relief in more patients and provided feedback to physicians and nurses. This activity would have accomplished two things: a) We would have had better proof of our influence on patient care, and b) we would have been able to introduce palliative care to physicians with numbers and hard data, a currency that they respect and understand better than more nebulous concepts of comfort or "good death."
• Measure something that you know you can improve. This is partly a corollary of the first point, but pain need not be the only thing that is measured. We know that we improved patient care, but aside from testimonials, we had no proof. We chose a quality of life measure because that was what we were most interested in enhancing, but we should have looked at something smaller and more easily changed, as well. The Rand Health Center to Improve Care of the Dying PC-QuIC program is an example of this approach (http://growthhouse.net/
  ~medicaring). Showing that care was improving would also have increased the likelihood that more physicians would have incorporated palliative care into their practices. Demonstrating efficacy bolsters any attempt to change the status quo. Measuring often, making adaptations, providing feedback—showing physicians how they were improving—would all have enhanced the credibility and the durability of the program.
• Provide for the future by sharing the responsibility. Once the program was running smoothly, we should have involved at least one other attending physician and advanced practice nurse in the day-to-day management, even perhaps to the point of having two nurses share two jobs. Had others "owned" the program, it would have had a better chance of surviving the departure of its founders.
• Hang a shingle somewhere. Survival requires both hard money and a presence. In our case, putting salary lines in different departments made it less likely that the program would be eliminated as a whole, but it also eliminated control and reporting lines. We should have renamed the Palliative Care Initiative as a program and officially housed it somewhere—perhaps in the Section of Geriatrics.

I am sure that others can add to this list, and I encourage anyone who has contemplated starting a program in palliative care to borrow and improve upon any ideas that we generated. Improving the palliative care of hospitalized patients requires creativity, flexibility, stubbornness, and money, and I for one, think it's worth trying again.

The opinions expressed in this essay are my own and do not necessarily reflect those of the United Hospital Fund, the Brooklyn Hospital Center, or any other individuals with whom I worked. I am grateful to the many colleagues who felt, as I did, that we had created something special, if impermanent. They cannot all be listed, but I will single out some for special mention: Mary Drayton, Margaret Souza, Alice Herb, Brian Regan, Bob Rosati, Eliot Lazar, Betty Levin.

References

1. United Hospital Fund also subsequently underwrote Brooklyn Hospital's Family Caregiving Initiative (see the Promising Practice in Innovations Archives issue Vol. 3, No. 2, 2001.) I was co-PI of that program (along with Ellen Bartholdus of Wartburg Lutheran Home for the Aged) until my departure from Brooklyn Hospital in 2000. Dr. John Larkin then took over as co-PI. [Return to Personal Reflections]

2. Siegler E, Herb A. Ombudsman Rounds: Teaching principles of palliative care at the bedside. Gerontologist. 1998; 38(SI1):171.[Return to Personal Reflections]

3. McMillan SC, Mahon M. Measuring quality of life in hospice patients using a newly developed Hospice Quality of Life Index. Quality of Life Research. 1994;3:437-447.[Return to Personal Reflections]

4. Benzia D, Rosati R, Drayton M, Souza M, Liss J, Siegler E, Lazar E, Regan B. Effect of the Brooklyn Hospital Palliative Care Initiative on Perceptions of Patients' Quality of Life. Presented at Brooklyn Hospital Honors Day, May 1999.[Return to Personal Reflections]

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