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

Integrating Palliative Care into Nursing Homes

An Interview with Howard Tuch, MD,
and Pamela Parrish, RN, BA, CHPN

Genesis ElderCare and the University of Pennsylvania School of Nursing embarked on a three-year intervention study with six nursing homes in Maryland to explore and compare two interventions aiming to integrate palliative care expertise and practice into this setting. This effort was supported by a grant from Promoting Excellence in End-of-Life Care, a national program office of The Robert Wood Johnson Foundation.

In addition to the training that was common to all four of the intervention sites, all four homes received the in-person support of a nurse palliative care expert. Pam Parrish visited each intervention home for 4-5 hours each week to model new skills, answer questions, and support the implementation of the learning and tools introduced at the training. Ms. Parrish also trained additional staff who did not benefit from the first off-site round of training. [Citation: Tuch H, Parrish P, Romer AL. Integrating palliative care into nursing homes: An interview with Howard Tuch and Pam Parrish. Innovations in End-of-Life Care. 2002;4(2): www.edc.org/lastacts]

Beginnings

How did this effort get started?

Howard Tuch: We developed this particular model for palliative care programming as a research study in collaboration with the University of Pennsylvania School of Nursing under a grant from the Promoting Excellence in End-of-Life Care initiative. The study began in December 1998 and ended in December of 2001. Neville Strumpf, PhD, RN, a nurse researcher at the University of Pennsylvania (UPenn) and I were co-investigators. Dr. Strumpf brought her expertise in research design and data analysis to the effort, which complemented my clinical expertise in palliative care and knowledge of the Genesis system. To ensure the integrity of the research process, all of the data were collected by the UPenn team and then analyzed and stored there. Once the study got going, we both worked closely with all of the sites.

One of our initial questions was: Could we could adapt systems of care that attend to palliative goals into the daily life of the facility, which would then lead to improved end-of-life care? In other words, we were seeking to adapt the way in which the admissions coordinator did the admission counseling and worked with families; the way in which the nurses did their initial assessments, the way in which the care planning was done, the way in which quality improvement was done. So, the process question became: could we influence end-of-life care in a positive way by a combination of training and systems change? The basic intervention was to offer some training, initiate a care delivery system that included palliative care goals and activities, all with the support of a nurse palliative care expert, who visited every intervention home each week.

In the more elaborate intervention (the Team Homes), we wanted to add more of a structure to what was essentially a process intervention, in the form of a specific palliative care team led by a medical director. This interdisciplinary team had a core membership of the medical director, two palliative care coordinators (usually one each from nursing and social work), and the activities director. In addition, individual aides and unit managers took part in each meeting in which "their" patients were being discussed. Other representatives from hospice, rehabilitation or dietary would occasionally attend. In one home, someone from admissions was also part of the team.

In these Team Homes, the staff members developed specific eligibility criteria for patients to gain formal admission into the palliative care program. What we meant by "program" was access to the palliative care team's services and attention.

Our second research question was: In the complex world of a nursing home, do we need to add this kind of structure in order to improve end-of-life care or is the training and systems approach sufficient to change practice? In part to answer this question, we then compared the care and events surrounding death at these four intervention homes with one another and to usual care in the two control nursing homes. Our outcome goals—improving advance care planning, pain and symptom management and enhancing psychosocial services to patients and families—were the same for the four intervention homes.

The overall intervention can be summarized by the following steps:

• Design of intervention based on prior work at Genesis, including survey of staff attitudes and review of deaths
• Off-site training of staff listed above on palliative care principles, care delivery process, and tools
• Baseline staff survey of attitudes
• On-site training sessions
• Creation of teams
• Weekly presence of Pam Parrish and bimonthly visits by Howard Tuch and Neville Strumpf
• Repeat of training sessions and incorporation into new staff orientation
• Ongoing data collection

Ongoing On-Site Consultation

HT: What became very clear early on was that even if we were to get the homes to adopt a process or to run a team like this, and to focus on these kinds of issues, they needed more on-site help. Early on in the grant, we recognized that and we were lucky enough to find Pam Parrish, who could provide the on-site training, mentoring, and guiding of the facilities in these processes. We believe her presence and mentoring activities were a big component of the changes that we were able to achieve at the four intervention homes.

Positioning the Intervention for Success

It sounds like a top-down intervention. How did you position the intervention such that you could succeed?

Pam Parrish: Dr. Ira Byock, director of Promoting Excellence in End-of-Life Care, recommended a two-way approach: top-down and bottom-up. So, that's what we did. The program is top-down in that we recruited strong administrative support at Genesis for the intervention. I had a lot of support from Nancy Morrison, the corporate liaison at Genesis, to help facilitate buy-in from the local administration. Whenever I had questions, concerns or problems, I talked to her, and we worked it out. But it was more than top down; the entire implementation involved working closely with staff. Our approach was to frame the new tools and activities as a way to enhance the activities they were already engaged in.

HT: Clearly, the leadership needs to accept the idea of the project. However, I think that this pairing of Pam, who was the clinical nurse consultant, an outsider working in the homes, together with what turned out to be an operational person from Genesis was really key to the program's ultimate acceptance and successful implementation. Each home needed someone who was absolutely familiar with the operational structure and culture of the homes and a clinical consultant who had mastery of the substantive technical knowledge and practices the project was hoping to instill. Many times over the course of the project, issues came up, questions about interaction between Genesis staff and the research staff, and this team was able to respond effectively to those issues. Nancy Morrison, the corporate operations person, turned out to be very skilled at serving as a buffer between the research component and the facilities themselves, when that was necessary.

Recruiting Buy-In of Caregivers

Pam, how were you introduced and how did staff come to feel they needed your help?

PP: When I was first introduced, I was working for the University of Pennsylvania, I was not a Genesis employee. So, I went in and talked to people. They always questioning who I was, and why was I looking at charts, and so on. What I ended up doing was going to the corporate liaison and requesting a Genesis name badge. It opened doors for me. I was "okay" after that because I had a seal of approval from the top-down. I still introduced myself when I was in the homes, as a professional courtesy.

Did you do needs assessments with these homes beforehand to help shape the intervention?

HT: The intervention grew out of prior work within Genesis. We had collected information on the ways in which our residents were dying in our homes: the clinical concerns, decision making, and the use of resources. We also had extensive data on staff attitudes toward the care of dying residents that helped frame the goals of the program. So, no, it was not designed in response to needs formulated specifically at each of these homes. However, it was designed with Genesis nursing homes and their existing structures and processes of care in mind. We tried hard to integrate any approach that we were advocating into the existing systems of care.

In the design stage, we were thinking about how we could re-orient each of those processes—from admission to nursing assessment to care planning to quality improvement (QI)—toward palliative care goals for appropriate patients. This process of reorientation of care is certainly something with which we are still struggling. At times over the course of the project, staff people viewed additional tools as additional paperwork. We were successful, I think, when we were truly able to make the palliative care processes a part of what the staff person did on a routine basis, and he or she didn't view them as over and above the usual work.

How did you overcome this initial resistance to the project among staff?

PP: Here is where the bottom-up part of our strategy becomes evident. In addition to the administrative support, we had to get buy-in from the staff members who would be carrying out the intervention.

At the outset, the research team conducted an attitude survey on death and dying before we actually implemented any of the new practices in the facilities. So in effect, we did conduct a baseline assessment. We collected a fair amount of both initial and follow-up data. In addition, I spoke informally with staff, asking, "What do you think about palliative care? What has been your experience? How do you think it works in this building, and where do you think we can go from here?" Talking to people helped me understand individual biases, and helped them identify how they would like to see end-of life care in their facility.

How did what you learned from this assessment of staff attitudes about death and dying influence what you did?

PP: The staff was generally comfortable with caring for residents at the end of life, and expressed awareness that the residents had special needs at that time. They were concerned that we would create another "exercise in paperwork" to add to their already busy schedules. We then realized that we had to keep this process from overwhelming the staff, and, for one, keep the paperwork to a minimum.

The Education Intervention: Training, Tools, On-Site Mentoring

HT: The first level of training was directed to a designated set of palliative care coordinators—the administrator, the director of nursing, and usually, the social service director. We invited four or five people from each facility and trained this upper-level staff of the four homes together. We tried to have some initial phone conferences on a regular basis with staff across all four sites. Coordinating that communication turned out to be, practically, very difficult to do. We did bring this group back together in the second year, for a second day of training and focused more on psychosocial and spiritual issues.

PP: I carried a lot of the communication between facilities. Issues that came up in one home were likely to be issues in the others. I took lessons learned from one facility to the others. In this way, they learned from each other.

Introducing the Effort to Senior Staff

Did you have specific goals for this initial training of the administrative cadre?

HT: We viewed the real value of this initial training as making people familiar and comfortable with the concepts of palliative care. We emphasized how consistent the concepts of palliative care were with what staff members' motivation was to work in long-term care in the first place. We did not anticipate that they were going to learn or retain specifics over time. We knew that the implementation of our change effort was going to be experiential and hands on. Its success was dependent on Pam's weekly mentoring, and it was supported through the bi-monthly visits of the principal investigators as well as all of the contact the staff members were having with the tools and the in-service training that we were arranging for them within the nursing homes.

We did however, lay out the goals of the project and introduce them to the training manual that each home would have as a resource, and to the tools we were hoping to use to improve advance care planning, pain and symptom management, and psychosocial care. We explained the elements of the research study, and the Palliative Care Worksheet that data collectors would be using to track all deaths during the study.

On-Site Presence and Trainings

HT: Neville Strumpf and I maintained close contact with each nursing home and we visited the facilities every other month. Typically, we would spend a half-day at each center reviewing issues and problems. We sat in on team meetings, commented on the way in which those meetings were unfolding, and made additional suggestions. I would talk to the palliative care coordinators or to the administrators at the facilities every month, by phone.

Staff members took the modules that were part of the manual, some of which I and others had presented at the initial training, and trained other staff, using them within the homes periodically. In this way, all levels of staff were being introduced to the pain management approaches on a periodic basis. If you look at the Steps to Implement the Palliative Care Delivery Process, for example, it names and delineates the use of several tools and goals, such as discussion of palliative care goals with residents, physicians and families, or using the pain assessment tool to assess pain. It was Pam's regular presence, role modeling and mentoring that transformed that list from one more checklist to complete to developing whole new ways of interacting with residents, families and other staff members. I am not denigrating the skills of the staff here; this is more a commentary on the process of learning a new set of skills and would be true for any of us.

Describe what you feel "worked" and how you knew it was working.

PP: We spent a lot of time focused on improving pain management skills because staff had identified that as an area of weakness. Much of what I did was mentoring and teaching by example. For example, when a nurse observes that a resident's quality of life has improved due to better pain management, she truly feels empowered. When they saw residents function better in terms of their activities of daily living, because their pain was managed more effectively than before, or that a patient suffering from dementia was no longer moaning all the time—those observations reinforced the value of this work. Nurses tend to learn from individual cases. Those are the lessons that stick with you.

We also talked to residents and families about advance care planning, asking specifically about their values and goals for care, rather than focusing solely on the questions on the advance directive, i.e., if they wanted IV's, etc. These conversations were different, and more mutually acceptable than conversations that the staff reported having in the past. Staff learned that the families' first priority was to keep loved ones comfortable at the end of life. With the enhanced pain and symptom management skills, staff members were more confident in their ability to achieve this goal, and expressed that in their conversations with the residents and families.

Tools: Changing Practice and Tracking Changes

Did you use existing tools from the field or did you create new tools in order to implement your program?

HT: We modified a lot of existing tools. At one point, we were accused of being too reductionistic. But we were all convinced that we had to be much more focused if we were to do something meaningful in this complex environment in which we work. We chose to focus on three distinct areas: pain management, advance care planning, and psychosocial issues.

For pain management, there really were not good existing tools for the long-term care population. The intensity scales didn't seem to work terribly well with a largely cognitively impaired patient population. For this group, we knew we needed to focus on communication within the team as well as on the assessment of pain. We modified our tools to try to capture a strategy that we could use to communicate about pain to the physicians. The responsibility in long-term care, more than pain management, really, is pain assessment and communication. The nurses need to be able to recognize pain, to be able to categorize it in some way, and to be able to communicate that assessment to the physicians themselves, or to the hospice providers, or to the nurse practitioners who are working with them.

We designed the Pain Assessment Tool¹ as well as the Pain Audit for Customers with Dementia not only do that assessment, but to prepare for that communication. So, we would start by looking at the conditions potentially underlying the current pain complaints, and then go through a more typical pain assessment, but focusing more on the effects of the pain. What is the pain doing? How much is the pain limiting function, i.e., activities, sleep, or appetite?

Our goal in the pain management education segment was to convince staff of the central impact of effective pain management, not only on quality of life, but on all of the goals that we have for people in long-term care. The implications of pain and its management are seen in a wide array of issues from mobility and reduction of decubitis ulcers and contractures, to enabling social activities, increasing appetite, or preventing weight loss.

Had you piloted this modified tool or validated it before you started using it?

HT: We did not do any psychometric testing of the tool. It has face validity and we did get lots of comments from the nurses themselves about its utility.

Implementation of the Education Intervention

HT: In the Steps for Implementing the Palliative Care Delivery Process, we lay out the map of the practices we were trying to instill in all four intervention homes. This multi-step process began at the time of a resident's admission to the facility, at which point the admission coordinator would administer a very simple screen, the Palliative Care Screen, to identify the presence of an advanced cancer, or terminal or end-stage illnesses. We included heart disease, dementia and chronic obstructive pulmonary disease (COPD) on the list, as you will see. Early on, we got out of the business of predicting how long someone would live, as that really didn't matter. What we were looking for here was the presence of a very far advanced disease and a set of goals emanating from the family or patient that were consistent with what we had to offer within the context of palliative care.

In addition to the screen, the admission coordinator listened to new residents and their families, in order to complete this assessment. Many families come in after disastrous hospital stays. The spouse or the new resident may make some kind of statement to the effect that he or she would never want to go back to the hospital again. Such comments give some indication that this person might be interested and appropriate for palliative care, and open the door to that discussion.

For new residents whose "screen" indicates they would be appropriate for palliative care, we would then conduct a more formal assessment. The admissions director then passed along the initial screen to either the palliative care coordinator or the nurse who was admitting the patient. Using another tool that we modified from the National Hospice Organization (NHO) guidelines for non-cancer diagnoses,² she would look in more detail to determine whether or not this individual was likely to be in an end-stage disease condition. With that second level of screening, we would get more details on the resident's wishes, on the presence of decision-making capacity, and on some of the disease conditions that they had, which we felt would make them particularly appropriate to be followed within the context of palliative care.

Once it was clear that this resident was appropriate for palliative care, the staff members would use the "Steps" checklist, which guides the use of specific tools related to each of the outcome goals of the project. All of these steps keep linking the goals of care and any treatment action back to the principles of palliative care. We felt that having specific tools made the process easier to follow and more likely to be implemented. All of these tools ideally serve to create a more coherent and thoughtful plan of care for residents who are dying.

Pam, what were your first activities as the nurse consultant at each home after the initial assessment?

PP: The education was definitely first. After the education, the data collectors and I went through and screened all the residents, at all four centers. The number of initial screens was unrealistic for the staff to complete, so we used this time as a teaching opportunity. We included staff in completing sections of the screens, and reviewed every completed screen with the Palliative Care Coordinators to reinforce how to complete the screens, and what to infer from the data collected. It was up to the Palliative Care Coordinators, and Palliative Care Teams when applicable, to determine if the resident was then appropriate for palliative care.

Education Plus: Intervention at the Team Homes

HT: All the intervention homes received the training, this array of tools, and our effort to embed them in the Genesis system, i.e., a series of steps staff were expected to follow and document for every patient identified as being appropriate for palliative care. However, it was only in the two homes in which we introduced the palliative care teams that we actually identified this series of activities as a program, and made explicit decisions about patient eligibility. In what we refer to as the two Team Homes, we did get consent in order for residents to be formally admitted into a program of palliative care. The families had to agree or the patient had to agree that this was the approach that they wanted.

Was that true in the "Education Only" intervention sites?

HT: It wasn't really true within the context of the non-team sites, because the eligibility and the structure weren't really there. We would certainly have a discussion with those patients and families, but the absence of a palliative care team meant that we had no identifiable structure for what we were doing in the "Education Homes," as opposed to the "Team Homes." Families were aware of our efforts to integrate palliative care into the routine care of the home.

How many residents entered the program in each of the Team Homes?

PP: The larger site had 201 beds in the facility, and we identified approximately 40-45, residents as eligible for palliative care there at any one time. The smaller Team Home had 129 beds, and there we enrolled approximately 28-30 residents in the palliative care program. The Education Only homes had 125 and 98 beds, respectively. Fewer residents in those homes were identified as needing palliative care and it was more difficult to monitor exact numbers without the "team" process in place.

Describe what was distinct in terms of the team meetings at the Team Homes.

PP: Every week, we had regularly scheduled interdisciplinary palliative care team meetings led by the medical director. Representatives from dietary, nursing, social services, and the activities director, as well as the palliative care coordinators and other staff, as able, took part in these 45-minute meetings. Unit managers presented on their residents. For some residents, the unit manager reported "no change since our last meeting," whereas for other residents, he or she raised new concerns, such as increasing pain or other symptoms. At times, the medical director was also the resident's primary physician. In those cases, the nurses were able to take medical orders at the meeting as well. We would discuss and attempt to resolve whatever issues came up for a particular resident. The meetings were always open to residents and families. When they were able to come, they helped us identify issues and solutions as well.

These regular meetings about the goals of treatment and the status of these residents made caregivers more aware of what was going on for these people. Activities directors really played a big role in this process. For example, if residents became more room-bound, the activities director would increase one-on-one visits, or involve the families more, or just be a little more sensitive to end-of-life needs. In fact, one of our activities directors told me that she felt the palliative care approach validated some of the things she had been doing anyway. Praying at the bedside, or engaging in some of the religious rituals that families had requested, or just sitting and holding hands are examples of these activities. The presence of a palliative care team and program of care made everybody a little bit more sensitive, I think, to what was going on for the resident.

We found that by increasing staff awareness that a resident was dying, in those settings where hospice was available, we had a real increase in hospice referrals. And they were appropriate referrals. At some of the centers on the Eastern Shore, for example, hospice was not available, so we did not see that increase across the board.

Staffing

PP: The Palliative Care program was built into the existing staffing, and the existing processes; it was something we melded into what was already going on. That was one of the requirements of the grant. The Robert Wood Johnson Foundation was looking for a program that would be reproducible anywhere in the country.

The positions that were new, and covered by the grant, were my position as the nurse consultant and the data collectors from the University of Pennsylvania. Another home can implement the intervention without engaging in the research activities, however.

HT: We now believe that the intervention won't work without a nurse expert in palliative care in place because of the staff turnover, the complexity of working within long-term care, and many other reasons. The right kind of physician, i.e., one who is involved, knowledgeable in pain management and supportive of palliative care, is also important and may be necessary for the success of the program.

Most larger nursing home companies have regional clinical people who help the facilities in a variety of ways. They often help the facilities put out forest fires, but they also help them prepare for surveys. It would be very possible to build this kind of nurse palliative care consultant role within that regional structure. Pam was in these facilities 4-5 hours a week, most of the time, but less as the process went on. In the facilities that really adopted the program, she didn't have to be there so often. One regional person can attend to 8 or 10 homes, and that is entirely do-able within the structure of long-term care today.

Did the Team Homes have more physician presence than the status quo?

HT: I think that's fair to say. There's certainly more regular physician presence. In many of our homes, the physicians or the medical directors do come in on a weekly basis. We didn't pay the medical directors extra for doing this. They came in, and participated in the palliative care team meetings as they would participate in other team meetings that they were responsible for in their role as medical director.

And yet they were investing more time and you didn't have to pay them to do that?

HT: Yes, we were able to get them to do this.

How do you account for that?

HT: Well, I account for it in a variety of ways. I think that people are dedicated to improving quality in long-term care; they like the idea of working to improve end-of-life care. It's a mission that people really can embrace. The medical directors were getting paid for their overall responsibility, but this role was something in addition, and they were not getting paid additionally for this. However, these meetings helped them do their jobs more effectively. Medical directors often are the attending physician for many of the residents in the home. The palliative care team discussions of his/her patients were an efficient mechanism to keep up with clinical changes, alerted the physician to the need for visits, and perhaps avoided late night phone calls, and so forth.

PP: The palliative care team meetings were, in fact, proactive. As a consequence of these meetings, we were taking actions, such as delivering effective pain and symptom control for end-of-life residents, which prevented crises from occurring.

HT: These meetings really did make the medical directors more aware of the overall quality in the facility and of the behavior of different physicians. There was a secondary benefit to their relationships with other staff, as well. Staff members at the aide or the dietary level typically never interact with physicians and so often feel very cut off from them. This opportunity to work with the physician was a positive experience. In both of the Team Homes, I think that the physicians enjoyed the teaching aspect of this role and found their participation in the teams rewarding.

Research Elements: Describing All Deaths

HT: The best data that we will have from the study will really come from the analysis of the events surrounding the individuals' deaths. Every time a resident died in one of the homes, we completed a Palliative Care Worksheet. This worksheet tracked the decisions that were made, the clinical circumstances surrounding the death itself, including an assessment of how much pain someone was in, and the utilization of different kinds of services. We are in the process of analyzing the data on every death over this three-year period in all six of the homes.

The data collectors were nurses hired by the University of Pennsylvania team, as well as the nurses at the centers who knew the patients the best. The data collectors were primarily responsible for going into the homes, and ensuring that the data was complete by talking to the nurses, by reviewing the charts, and so forth. This retrospective data collection, although conducted by the UPenn researchers, was construed as part of a Genesis quality improvement effort, so did not require resident consent.

Barriers and Challenges to Implementation & Strategies to Address Them

Staff Turnover

PP: I would say the first and foremost barrier to successful implementation of this kind of intervention is staff turnover. Staff turnover is a problem at all levels: aides, nursing and administrators. There is a nursing shortage, which is a big part of the reality of long-term care. One thing we did to address this issue of changing staff was to make the intervention a part of a system. If an individual staff member left, the process could continue.

At one home, we lost everybody—the administrator, director of nursing, social services, and the educator. We had to start all over again in terms of the administration. We had part of the process in place and fortunately the core group of staff nurses remained the same, but it was challenging.

Buy-in

HT: We had a couple of initial problems in terms of implementing the program. One was to convince people that they really needed to learn something, other than what they were doing already. Second, we needed to persuade them that these principles of care were congruent with the reasons why they went into long-term care in the first place. We highlighted the ways that palliative care is consistent with their overall goals for long-term care. In fact, this effort is a better fit with those goals than perhaps many of the other things we've asked people to do in these centers over the years.

PP: As we already mentioned, among the staff actually doing the work, we faced the perception that they are already providing palliative care. All of the new forms and protocols could look like a meaningless exercise and more paperwork. One thing that we did to overcome this concern was to deal the process out in little bits and pieces, one section at a time, one task at a time. The analogy is the computer manual that comes with a new computer program—you are not going to sit and read the whole thing; you need to do it in digestible bites.

Regulatory Scrutiny

HT: Another key barrier is that the care nursing homes provide is under intense regulatory scrutiny. That scrutiny really influences everything that people do, and the way in which they think about changes in residents' conditions. For example, if a resident is losing weight, what's going on with the patient clinically may not be the first concern. The first question that comes to mind may be, "What is the state survey agency going to do when they see this patient?" The assumption on the part of state regulators has been that any negative outcome, such as resident decline, is the result of inadequate care until proven otherwise. Documentation here is often poor, and the ability to prove that weight loss is an inevitable consequence of the progression of the underlying illness is often difficult.

What did you do to address these regulatory concerns?

HT: In the manual as well as in the training, I emphasize how people can understand, set, and develop palliative goals for residents. These treatment goals are legitimate, recognized by the Centers for Medicare and Medicaid (CMS),³ even within the Minimum Data Set (MDS) instructional manual that we have. This regulatory agency and these reporting mechanisms acknowledge that palliative care goals are legitimate goals to have for a nursing home patient. Certainly, we need to evaluate a patient in order to understand if the weight loss is because of depression or because of an adverse reaction to a medicine, or because of severe constipation or a mouth ulcer, for that matter. But we don't need, necessarily, to put a feeding tube in. And we don't necessarily need to put someone on appetite stimulants just because that person has lost weight. If the action is not consistent with the resident's goals for care and it is not likely to contribute to that person's level of comfort, then it should not be offered out of concern for regulatory compliance.

PP: Part of the reason why staff members were so nervous about my presence early in the program was because of this regulatory scrutiny, which makes staff suspicious of outsiders. Traditionally, the regulations in long-term care were formulated with a focus on rehabilitation. We had to educate staff to think beyond rehabilitation. We had to be very up-to-date in our knowledge of the regulations. Once again, the support of the corporate liaison was invaluable when it came to questions about regulatory processes.

HT: Part of the way to address this real concern about regulatory compliance is to give people language, care plans, and interventions that allow them to satisfy these regulations. I don't think there's anything specific within the statutes or the regulations themselves that says you can't do end-of-life care or palliative care.

In fact, at this point, it is quite the opposite. To continue the weight loss example, there is specific recognition that weight loss occurs at the end of life. Some things are more likely to happen among dying patients. Staff can set goals that are predominately or solely focused on improving palliative care outcomes for patients.

The problem has been far more in the variability of the survey process. It's quite geographically variable, and sometimes variable among the survey teams themselves, in terms of how they'll view individual outcomes and whether or not those outcomes are seen as avoidable or unavoidable, or consistent with the standards and the regulations. Interpretation is key here.

We have a prime directive in long-term care— one of the main regulations says that we have to maintain or attain the highest practicable level of well being for our patients. The challenge is how to do that, within the context of a dying patient. How do you maintain someone's highest level of well-being when he or she is dying? In the past, the answer has been: treat the patient aggressively, send him or her to a hospital, and put in a feeding tube. We are now in a sea change in terms of attitudes and practice. For us, now, the answer is: develop and carry out an interdisciplinary palliative care plan. This change inside the nursing home cannot happen in a vacuum, however. We need to be working with the regulatory community as well.

Educating the Regulators

PP: Howard presented a paper at a CMS-sponsored conference in Atlanta in August 2001. The conference was attended by CMS staff, (regulators), as well as hospice providers and long-term care representatives. Great dialogue followed and it was a learning experience for all parties, I thought.

HT: It was remarkable leap for CMS to acknowledge that people die in the nursing home and that there may be a regulatory role in fostering better end-of-life care apart from sanctioning non-compliance. It was also one of the only times when the major communities of long-term care, hospice providers and surveyors were in the same room together with an opportunity to voice their concerns and expectations of one another. This kind of educational opportunity for all parties, outside the walls of the nursing home, is as important as the education we conduct with nursing home staff to improve end-of-life care.

Lack of Knowledge

HT: In addition to fear of regulatory scrutiny, the field of palliative care is new, and in part because of these barriers, this new set of knowledge and skills has not always percolated through to long-term care. Staff didn't really know how to structure the care plan and the interventions. Staff members were familiar with the nebulous order that said "comfort measures only," but no one was quite sure what that meant. And such an order had only been used in the setting of a very actively dying patient.

Lessons Learned

What have you learned so far about the impact of your intervention?

HT: In the Team Homes, there was more support and a more defined admission into a program. We were hoping the process of care would be quite similar in all the intervention homes, outside of the discussions within the team and maybe the added attention that the team could bring to the care of those individual patients. So one of our research questions, which we have not yet fully answered, is whether or not care turned out to be different for residents in the Team and Education Only homes.

Broadly speaking, Neville Strumpf, who is in charge of the data analysis, believes that we do have evidence of improving staff attitudes about dying, as well as better pain management in the intervention sites. There are several steps, as you know, between nurses assessing pain more effectively and finding improvements in outcomes at a patient level. Nurses can be doing more effective assessments, but they may not be recording them all in the chart. Or, once more thorough assessment is occurring, staff may be finding and recording pain that previously was ignored. So, documenting "improved outcomes" is tricky. The UPenn team has not completed their analysis at this point, so we don't yet have all the answers.

PP: One of the things that we found in all four homes was that the lessons learned in providing pain management or conducting more thorough advance care planning were being spread to all residents throughout the homes. For example, nurses reported using the new pain management skills for rehabilitation residents.

Community Matters

PP: Another fascinating thing we've learned is that location matters. We had two centers in the Baltimore urban area, and we had two centers in the very rural, Eastern Shore of Maryland. Eastern Shore is old farm country, and it was just really interesting to see how the staff there responded differently to the Palliative Care program. After awhile, it dawned on me that the patients that came into the facilities on the Eastern Shore were either related to the staff or known to the staff before they came in. So, there's a different sense of accountability. The staff responses, and maybe their expectations about death and dying, were a little different in an area where the residents were not strangers. In the urban area, the residents were usually strangers to the staff when they entered the home.

HT: We're working on a theory that the extent to which a nursing home is integrated into its local community in a variety of ways may be a good kind of proxy measure for the quality of care. This may be specifically true for the quality of end-of-life care that the facility provides. Familiarity seems to matter a great deal. When existing bonds of community extend into the nursing home they continue to exert an influence on the relationships among staff and residents. This connection affects the way residents get treated, it affects the way decisions are made, and it affects the attention to the smaller details and the social issues that seem more important in end-of-life care than perhaps at other times in the life cycle.

Stable Leadership Matters

Did you achieve your goals at one home to a greater degree than at the others? If so, were there conditions present at that home that you could attribute either to the success of your intervention?

HT: One home was much more "successful" in implementing the program than the others. I think we were working with a receptive group of people there. In addition, in this particular home they had stability of leadership. Although we chose all six facilities because we anticipated stable leadership, it was the only home of the six in which all the top leadership positions remained stable throughout the three-year study. The administrator, the director of nursing, a key champion, and the assistant director of nursing were all at the facility throughout the project. That stability made a tremendous difference.

Sustaining and Replicating the Program

Is the program continuing beyond the grant?

PP: Yes. Genesis hired me as a regional clinical educator after the grant was completed, to continue this work. We've just initiated the Palliative Care program in three new centers in Baltimore. I still go in monthly to the study sites, but am focusing on implementing the program at these three new nursing homes. I hope to continue to share "lessons learned" among all of the Palliative Care homes.

Which level of intervention have you chosen to replicate?

HT: The team model seems easier for staff to wrap their arms around. It doesn't necessarily have to be a separate team; they have teams for a variety of purposes, so if we can integrate the palliative care concepts and approaches within an existing team, that would be fine as well. We want them to have a weekly discussion about end-of-life care, about the people who seem to fit in this category, about the deaths that have occurred within the facility, and how that might have been done differently. We want to build that weekly discussion about palliative care into the new sites.

PP: One of the administrators actually described this, I thought, quite well. She said, "With the meetings going on every week, palliative care is right in your face and you can't forget it."

Are you doing all of the things that you did in the intervention in these new three sites?

HT: In the old sites we're continuing to collect the data about each death, but I'm not sure that we are doing it in the new homes. At this point, we have a lot of data on how people die in our nursing homes, not only what we collected within the context of this grant, but elsewhere within the system.

Is there a cost associated with setting up these team programs in these new nursing homes?

HT: There is certainly time involved in implementing the Palliative Care program. Each center has limited staff with already full schedules. However, this approach to care helps nursing homes in a variety of ways. The administrators tell us that new residents are being referred to the home because of the Palliative Care program. At a time when occupancy is way down, this kind of a program may provide a unique niche in the community. We know that the presence of the program has influenced the outcomes of surveys which are now more interested in pain management and advance care planning.

What do you think would lead Genesis to adopt your model of palliative care in all their homes?

HT: I think it would be overstated to say that they are intending to use this model throughout the 300 Genesis homes. I don't think that that would ever happen.

Why not?

Well, in spite of the benefits, it's a lot of work, it requires somebody like Pam, and because the entire industry is faced with severe financial constraints, staffing concerns, and other barriers to wholesale adoption of such an innovation at this point. I think that they still view the whole package as a big investment in time and staff and effort.

We have not yet gotten to the place where I wanted to be with this whole process. My dream would be to integrate this kind of care into the usual processes of care across the board. Facilities wouldn't need to look at this as a huge investment in time, or staff, but as a reorientation of the goals and the interventions that the staff members are already likely to provide. We're not quite there yet.

We have a couple of additional facilities adopting the program, and ideally, within each of our regions, we'll be able to set up a dozen places that have a specific focus on palliative care. We have some facilities that are entirely focused on short-term rehabilitation, for example, so the Palliative Care program would not be suitable. It's not the place that they want to market this kind of an effort, even though they want to be able to incorporate many of the principles into that type of higher acuity setting.

What are the critical elements that must be included to replicate your program?

HT: I believe that there needs to be a nurse palliative care expert available, a team structure, medical director involvement, and a focus on a series of critical processes within the context of palliative care. In many places, we are trying to focus on these critical processes in end-of-life care: to identify patients early on, whether they are appropriate or eligible for palliative care goals, (as opposed to other kinds of goals within the nursing home), to focus on the assessments, and to recruit the nurses and social workers to incorporate the palliative care principles into their assessments. We built these assessments with regard to pain, advance care planning, and some of the psychosocial and spiritual issues. What we need to do now is focus on integrating them more widely throughout the Genesis system.

We've done a lot of work within care planning and the development of individual care plans. What is going to be adopted on a much wider basis are pieces of the Palliative Care program. We've done a system-wide pain management effort. We have gotten a set of policies, training, and integration into every nursing home within the Genesis system. We're going to do something similar with regard to advance care planning and new approaches with regard to CPR, and we have set up regional ethics groups in each of the regions within Genesis. We've taken many of the lessons from the palliative care model and have been able to bring at least those pieces to the organization as a whole.

Acknowledgments:

The authors wish to thank Diane Stillman, MSN, CS, program manager for the University Pennsylvania data collection effort, and Neville Strumpf, PhD, RNC, FAAN, principal co-investigator the University of Pennsylvania team, for their insights about the program and its implementation.

References:

1. See Resources and Tools page for link to Promoting Excellence website where it is available.[Return to Featured Innovation]

2. The National Hospice Organization. Medical Guidelines for Determining Prognosis in Selected Non-Cancer Diseases, 2nd edition. Arlington, VA: The National Hospice Organization. [See http://www.nhpco.org for more information.][Return to Featured Innovation]

The Centers for Medicare and Medicaid (CMS), formerly HCFA, is the US governmental agency which provides Medicare and Medicaid insurance. See http://www.hcfa.gov for more information.[Return to Featured Innovation]

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