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

Project Safe Conduct Integrates Palliative Goals into Comprehensive Cancer Care

An Interview with Elizabeth Ford Pitorak, MSN, APRN, CHPN, and
Meri Armour, MSN, RN

Project Safe Conduct, a collaborative venture between Hospice of the Western Reserve and the Ireland Cancer Center at Case Western Reserve University and University Hospitals of Cleveland, is one of four winners of the 2002 Circle of Life Award. Project Safe Conduct exemplifies a successful collaboration between staff at a National Cancer Institute comprehensive cancer center and a freestanding, community-based hospice in response to a common desire to provide seamless, exemplary patient and family care. One of the key goals of this project is to make palliative care accessible to persons suffering from advanced lung cancer even as they may be pursuing life-prolonging treatments. Persons with advanced lung cancer have not been traditionally well served in terms of timely referral to hospice. The often rapid course of lung cancer and the curative focus of cancer research centers has meant that curative and life-prolonging treatments have often taken precedence over attention to psychosocial and spiritual concerns, and active pain and symptom management in these settings. This project began as a demonstration project and research study, inspired by an awareness that these challenges need not be dichotomous and a wish to integrate these goals of life-prolonging treatment and palliative care. By so doing, the innovators hoped to simplify the journey through the labyrinth of treatments and services for patients with lung cancer and their families. The funded demonstration project research project is now over, (1998-2001), but the interdisciplinary team continues as the new standard of care at Ireland Cancer Center. This project represents one effort to provide patients facing life-threatening illness with the mixed management model of care advocated by the Institute of Medicine report, Approaching Death.¹ The 2002 Circle of Life Award is conferred by the American Hospital Association in conjunction with the American Medical Association, the American Association of Homes and Services for the Aging, and the National Hospice and Palliative Care Organization, and funded by The Robert Wood Johnson Foundation. In addition, Project Safe Conduct received the 2002 Award of Excellence in Education in the category of Educational Program Designed to Increase Access to Hospice and Palliative Care at the National Hospice and Palliative Care Organization's Management and Leadership Conference held September 11, 2002 in Washington, DC.

Elizabeth Ford Pitorak, director of the Hospice Institute of Hospice of the Western Reserve and Meri Armour, vice president for the Ireland Cancer Center, describe the collaborative process of designing and implementing Project Safe Conduct. The project derives its name from Avery Weisman's book, Coping with Cancer, in which he defines safe conduct as "the dimension of care that guides a patient through a maze of uncertain, perplexing, and distressing events"² In this interview with Innovations Staff Editor Holly D. Sivec, these innovators describe the process of creating an interagency, interdisciplinary team (that includes the oncologist) to supplement the care of patients suffering from stages IIIb and IV lung cancer and their families. The team's care emphasizes state-of-the-art symptom management, psychosocial, emotional, and spiritual support. These leaders depict the challenges of working across two distinct cultures of care, and the necessary training and steps they had to take to bolster these changes. The Pain Care Path and a Pain Flow Sheet, which they created to establish a clear standard of pain assessment and treatment and a system for documenting these pain management activities, respectively, are presented. This project was initially supported by a grant from Promoting Excellence in End-of-Life Care, a national program office of The Robert Wood Johnson Foundation. [Citation: Pitorak EF, Armour M, Sivec HD. Project Safe Conduct integrates palliative goals into comprehensive cancer care: An interview with Elizabeth Ford Pitorak and Meri Armour. Innovations in End-of-Life Care. 2002;4(4): www.edc.org/lastacts]

Genesis

When did you first recognize the opportunity to integrate these two care systems—a large community hospice and an NCI-designated cancer center?

Meri Armour: For many years, Ireland Cancer Center has had a referral relationship with Hospice of the Western Reserve. Before the advent of this project,13 percent of our patients with lung cancer were receiving hospice care upon discharge from ICC. Then in 1997, there was an RFA [Request for Applications] that came out from Promoting Excellence in End-of-Life Care, a national program office of The Robert Wood Johnson Foundation. When my team at the cancer center sat down and looked at this grant, we said, "This is something that we should do as part of our mission as a cancer center." However, we realized that we needed the input and expertise from our colleagues at hospice. So,we set up a meeting with the directors of our institutions, mine being Dr. James Willson at Ireland Cancer Center (ICC), and Elizabeth's being David Simpson, MA, LSW, at Hospice of the Western Reserve (HWR). We all agreed that we would collaborate on this particular grant application. It was clearly an idea of mutual interest and a constructive area of development for both organizations. From a cancer perspective, it was a piece of clinical work that we were not doing, or certainly not doing very well. We did not do a formal needs assessment before the project began, we just felt that we were not attending to these end-of-life issues as well as we wanted to. From the hospice perspective, they were clearly interested in sharing their insights with someone who would listen, and in assuring that patients nearing the end of life had access to palliative care, i.e., careful attention to maintaining comfort, addressing issues of life closure, psychosocial, and spiritual concerns. So, it seemed like a natural fit for us.

Rationale

MA: We had a pretty good idea when we were writing the grant that we resembled other cancer centers in the rest of the country in terms of our hospice referral rates. We thought we were doing end-of-life care well, we understood it, but we hadn't really developed it in a way that was meeting the needs of our community and the patients and families that we serve.

Elizabeth Ford Pitorak: The essence of this project is the idea that cure-oriented chemotherapy and palliative care can go hand in hand. So, philosophically we agreed at the outset that cancer patients need to have an opportunity for life-prolonging treatment and for exquisite care, in terms of pain and symptom control. These two goals for patient care need not be mutually exclusive. In fact, the Project Safe Conduct designers felt it was our obligation to patients to acknowledge and address both. So, staff members provide patients with the best therapy for their disease in the hope that we can forestall their death, as long as that's what the patient's choice is. At the same time, we provide patients with the opportunity to talk about the "what ifs." This project provides pain and symptom control and other kinds of palliative support, in an environment that we attempt to make open and communicative. Staff could be talking about both life-prolonging treatments, and life closure and pain and symptom issues at the same time. We wanted to be able to offer both without any discrimination against one or the other. This program gives patients more options regarding end-of-life care. If patients choose to go aggressive with chemotherapy to the end, they can also be supported with palliative care via the efforts of the Project Safe Conduct team.

Goals

What were the initial goals of the project?

MA: Our overarching goal was to improve care and services to persons dying of cancer and their families in the ambulatory cancer setting by integrating the principles of palliative care, such that the transition from curative to palliative care is seamless. The project was designed with four distinct outcomes in mind so as to achieve this goal:

1. Integrate the expertise and staff of HWR and the ICC by developing an interagency, interdisciplinary team to serve as a source of shared resources and knowledge, and locate this team at the cancer center.
2. Improve pain and symptom management for patients through the implementation of a Pain Care Path and the use of other tools.
3. Educate and support the ICC providers about issues related to end-of-life care, including communication with patients and families, management of pain and other symptoms, and how and when to refer patients to hospice care.
4. Use the team and the experience of the team to help educate the public of Cleveland and to raise the bar in terms of community and patient awareness about the opportunities to improve end-of-life care in this city.

How did you frame this intervention initially?

MA: We created this demonstration project under The Robert Wood Johnson Grant as a research effort on our part. And so we treated enrollment into Safe Conduct similar to enrollment in a clinical trial, and that meant that the patient's physician had to introduce the concept of what the team was about and what they could offer. Patients had to literally sit down with their family members and meet with the nurse on the project, and we would go through what was required in terms of the surveys that they would have to answer and what support the team would offer. Patients had to formally consent to participate, as they would in any clinical trial. They went into it with their eyes open, knowing that we were studying what their responses would be to this intervention. The intervention was described as a team of co-caregivers with their oncologists that would follow them throughout the course of their disease with us. We did have an Institutional Review Board (IRB) approved consent form, that spelled out the evaluation tools that patients would have to complete as well as confirming the fact that we could not predict any benefit from their involvement in the study.

Demographics

What population of patients did you choose for this intervention and why?

EFP: For the demonstration project, lung cancer patients with stage IIIb or Stage IV disease were eligible to enter the program. We chose this group because overall the prognosis for patients with lung cancer at these stages is poor, and we wanted to see if we could improve hospice referral rates among appropriate patients.

MA: We included 233 people in this particular trial over two years (1999-2001) and in that time we had three people drop out of the study. In addition, only three people ever refused to participate in the project. So, almost all the people that we talked to about this intervention chose to participate and remained involved. I think that's a remarkable feat. Fifty-one percent of the patients were female, and 39 percent of them were African American, so the group was a representative cross-mix of the population of Cleveland in terms of gender and race. The average length of stay in the program was 116 days, and at any given time we had a caseload of approximately 80 patients.

First Steps

What steps did you take to set the program into motion?

MA: One of the first activities once the grant was awarded in 1998, was to conduct retrospective chart audits to analyze the course of treatment of all newly diagnosed lung cancer patients in 1997. We wanted to use these 1997 patients to document our baseline, pre-intervention data. We looked at how many times pain was documented in chart, and a number of other items, such as how long they stayed, how many doctors were involved in their care, and how many of these patients were referred to hospice.

EFP: The first year before we enrolled any patients was devoted to a range of start up activities. We developed the pain care path and its associated guidelines, and the pain flow sheet, we documented the baseline data, and we began a methodical process of doing initial education with all partners and training the team. The original Safe Conduct Team (SCT) included three members—a nurse, a social worker, and a spiritual care counselor—all from HWR, even though the team was located at the Ireland Cancer Center.

Assembling the Team

EFP: Originally, we did not have an advanced practice nurse on the team, but instead a hospice nurse, who was knowledgeable in pain and symptom management and certainly in end-of-life care. The second position was the social worker, and the third was the spiritual care counselor. Our spiritual care counselor had approximately eight years of experience of working with HWR and the other two individuals each had about two years experience. During the demonstration project phase, we hired a research nurse to manage the process of gaining informed consent from patients as well as to administer all the evaluation instruments. She was also considered part of the team, as was the oncologist. In addition, the team had access to a psychologist and pain specialist for consultation.

What kinds of contact does the oncologist have with the other members of the team?

EFP: Members of the SCT had constant access to the oncologists depending on the situation. Individual SCT members could and did page the oncologists as appropriate. A team member would be present for as many physician visits as possible.

What were your respective roles vis a vis the team?

EFP: Meri functioned in an administrative role for the ICC. She handled those areas that required an understanding of the internal management system there. We had weekly planning meetings where we collaborated regarding implementation of the project. I was more involved in the nuts and bolts of training and mentoring the team.

As project director and an advanced practice nurse with more than 20 years experience in hospice as well as a background in oncology nursing and radiation therapy, I taught the team many points about acute care therapy, which includes chemotherapy and radiation therapy. I oversaw the complete development of all the education materials, namely the Pain Care Path and the Pain Flow Sheet. I also participated in formal training sessions for the nurses and pharmacist regarding pain management, and led the weekly team meetings.

What set the team into motion?

EFP: When the patient came to see the oncologist for the first time, the oncologist would explain the project and how there was this team integrated in the cancer center who would work closely with them. And hopefully the patient and their family would want to be part of this system. It was just kind of automatic—every patient with Stage IIIb or Stage IV lung cancer that came for chemotherapy or radiation therapy was automatically invited to be part of this project.

Contact & Training: Becoming an Interagency, Interdisciplinary Team

With the three original team members all from hospice, and with the program housed in the cancer center, how did you go about forming this interagency, interdisciplinary team?

EFP: Although the original members of the SCT came from Hospice of the Western Reserve (HWR), we never represented hospice, as such. HWR was able to provide people who were knowledgeable in end-of-life care, and it was this expertise that identified us, not our hospice affiliation. In fact, we made a point of all wearing "Project Safe Conduct, Ireland Cancer Center" badges. I don't even know if patients knew we came from hospice. It is important to define what I mean by an interdisciplinary team, as opposed to a multidisciplinary team. The latter tends to be when the different disciplines function in parallel whereas interdisciplinary means each discipline understands and knows and values the contributions of each discipline. From the patient's perspective, when an interdisciplinary team is in place, the roles tend to blend in terms of the patient's experience of the team.

EFP: There were real differences in the outlook and experience bases between the original core three-person team and the ICC staff at the start, and we actively sought to address these differences. I had an "a-ha" experience early on that demonstrated the need for training when bringing together clinicians from two entirely different cultures. As a project director, I was naïve about this need. Because my background is in oncology and I am an advanced practice nurse with substantial experience caring for cancer patients, I assumed that the team I was bringing with me from hospice would share my understandings. I very quickly realized that I was incorrect in my assumption. When we were doing team conferences and the HWR team would say, for example, "If the patient doesn't want to eat, that's okay." And I said, "Whoa, whoa, whoa!" At the end of life, as the body is shutting down, people often do stop eating. However, I realized that the original team's hospice experience was not sufficient. They needed education on the importance of nutrition, for example, for somebody who is going through aggressive chemotherapy and radiation therapy. I think we all began with a sense that perhaps the hospice team would be doing more of the teaching—but that was not so. There was teaching and learning on both sides. The folks with hospice experience had to understand more about the acute care setting, about chemotherapy, radiation therapy, clinical trials, because a lot of the patients are on clinical trials.

Another strategy for bridging this divide was that the SCT spent time observing chemotherapy, radiation therapy, and physician visits so they could have a better understanding of the day-to-day operations at the cancer center. This activity also gave them time to start building relationships with the staff at ICC. We took the team to the research area where phase one trials are conducted and the team went in to talk to a patient. One question we always ask is: "Is there anything we can do for you right now?" In this instance, the patient answered, by asking the following question: "Tell me how I'm going to tell my children I am dying." This led to an important conversation. In the course of this conversation, the patient was distressed and was crying. The research staff interpreted the patient's crying as evidence that the team had upset the woman. The team and I interpreted this emotion differently, seeing the tears as evidence of the patient being appropriately upset. Exploring these differences was productive for both groups.

On the other side was the ICC staff, and they needed education in pain management. The Safe Conduct Team created an extensive Pain Care Path and we educated the nurses and other staff at the ICC on how to use this pathway tool to assess and manage pain. We also felt the ICC staff needed a clearer understanding of how to recognize when someone was getting closer to the time when it would be appropriate to refer him or her to a hospice program—not necessarily HWR, but any hospice program the patient chooses.

EFP: The ICC staff also benefited from observing the Safe Conduct Team when they delivered "bad news." As with any topic, the oncologists' level of comfort in delivering "bad news" varied greatly. Over time, I observed the following stages of learning and comfort with this topic.

Call on team: Initially, an oncologist would call the team and request their presence and participation in delivering "bad news."

Keep me company: The next phase is exemplified by a comment from an oncologist who said, "You're not going to leave me."

Take it from here: The third phase was one where an oncologist would deliver the news and then look to the team to take it from that point with the family.

Seamless: Finally, oncologists became comfortable enough to deliver the news and be part of the ongoing conversation with the family and the team. Today it works very smoothly with a member or members of the team being present with the oncologist and jointly presenting to the family.

We offered a formal presentation on how to deliver bad news to the fellows, but not to more senior physicians. The work with the senior physicians was entirely informal, one-on-one. Part of the education, came from observing team members initiate the "now seems to be the time" conversation, to shift goals and go more to comfort-oriented care in lieu of cure-oriented care.

EFP: It was consciously written into the grant that the team would be housed at the ICC as a mechanism to help promote change. I am not sure if we could have been as effective as quickly if the team came in from the outside daily, as they would have been seen as outsiders.

From the beginning, everyone who was going to be working with the SCT was educated regarding the project. Part of the education, was giving all relevant departments written information explaining the purpose of the project, identifying the members of the SCT and providing telephone numbers for the individual team members as well as a general number for the team. Also, prior to the initiation of the project, a retreat was held where physicians and staff from ICC attended to learn about the project and to dialogue about concerns in working with cancer patients who may die.

EFP: There are many reasons for the success of the project, foremost was the support from the leadership of the cancer center. Dr. James Willson, medical director of the Ireland Cancer Center and principal investigator of the project, provided great leadership and set the tone for that support. For example, as a kick-off to the project, a retreat was scheduled to introduce the project and provide support to the oncologists with some beginning team building activities. Dr. Willson cancelled all scheduling of patients during that time. That one act sent a very powerful message, as this had never happened at the cancer center before. Dr. Dale Larson, a psychologist from California who has worked a great deal with hospice and end-of-life care, facilitated the retreat.

From Hospice of the Western Reserve, David Simpson, CEO, provided support by committing our organization to provide the SCT support through two major local grants from the Cleveland Foundation and The Elisabeth Severance Prentiss Foundation which were obtained by HWR. Additional in-kind support came from both the ICC and HWR.

Implementation

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EFP: The Safe Conduct Team spent a considerable length of time developing this Pain Care Path [View] [Print]; at the ICC. Care paths are the protocols that they use; they did not have a pain care path when we started. The Pain Care Path provides a decision tree pathway to follow, and also includes guidelines and supplementary forms with specific information and suggestions, making clear what the standard of care for pain management is. The additional pages include: