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Project Safe Conduct demonstrates how a hospice team can be successfully integrated into an ambulatory care cancer center. The partnership of the Hospice of the Western Reserve and Ireland Cancer Center (ICC) of Case Western Reserve University and University Hospitals of Cleveland proved to be an award-winning innovation.
Behind the success of Project Safe Conduct was the early recognition that bringing hospice into a cancer treatment center would entail challenges beyond merely offering patients some additional services. The merging of the different hospice and cancer care cultures took "incredible learning on both sides," said Meri Armour, M.S.N., R.N., vice president of cancer services at ICC, an NCI-designated Comprehensive Cancer Center. "We talk to each other, we sit on each others’ boards, but we had no clue how naïve we were about each others’ worlds." Most hospice people don’t understand cancer treatment, Armour said. As for the cancer center, "We didn’t realize how desperately in need of help and support our staff was."
Thanks to the partners’ joint efforts, Project Safe Conduct transformed the culture of the cancer center, while creating a model for improving care to cancer patients and their caregivers. For its accomplishments, Project Safe Conduct won a 2002 Circle of Life award, given by the American Hospital Association and other sponsoring organizations, to honor innovative end-of-life programs. "It’s an outside-the-box approach and it’s making a difference," the award citation noted. The project also won the National Hospice and Palliative Care Organization Award of Excellence in Education - Educational Program Designed to Increase Access to Hospice and Palliative Care.
“This was a process of growing and learning,” said Dr. James Willson, director of the ICC and Project Safe Conduct principal investigator. “What we learned is that good cancer care requires not only attention to acute management of the cancer patient, but also anticipating issues around the end of life and incorporating them early on in patient management.”
The name "Safe Conduct" comes 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.” Project Safe Conduct created a team to provide that guidance. The Safe Conduct Team (SCT) was composed of a social worker, an advanced practice nurse and a spiritual counselor from the Hospice of the Western Reserve (HWR), a large community-based hospice. A psychologist and a pain specialist from ICC served as consultants. A distinguishing characteristic of the program was the extent to which the external hospice team was fully integrated into the cancer center, even wearing badges identifying them as ICC staff. The team worked collaboratively with the medical staff at ICC as an interdisciplinary group, providing comprehensive services to patients enrolled in Project Safe Conduct.
Officials with the hospice and ICC spent months preparing for this merging of cultures. From the outset, the project had the strong backing of Willson and the unwavering support of David Simpson, the executive director of the HWR. Willson even took the unusual step of suspending clinic visits for a day so that participating ICC oncologists could attend an educational retreat in preparation for the program. Safe Conduct colleagues agree that Willson’s championing of the program was critical to its success.
"We lived with the question of how to bring palliative care into an acute care setting every day," said Willson, noting that in his own practice the transition to hospice was far from ideal. And so, he said, “We took the marvelous opportunity to work with hospice to build a new paradigm.”
In the planning stages, leaders of the two groups met often. Throughout the project, Elizabeth Ford Pitorak, M.S.N., R.N., C.R.N., director of the HWR Hospice Institute and director of Project Safe Conduct, continued to meet with ICC's Armour weekly to address problems.
"I had anticipated many more barriers in integrating the two philosophies," Pitorak said. But there were hurdles to overcome. One concept that the ICC staff learned to embrace was the central role of the family. "In the acute care setting, you are there to take care of the patient, but at hospice, the unit is the patient and family, and on any given day we may spend more time with family," she said. As in hospice, the unit of care for Project Safe Conduct was the patient and family.
It was also critical to find the right people for the team – hospice workers who could transition to the acute care setting. That took a couple of tries. Learning to function as an interdisciplinary - not multidisciplinary - team proved to be one of the toughest challenges, according to Pitorak. In a multidisciplinary approach, various clinical disciplines are involved in care planning, but an interdisciplinary team approaches care planning as a creative, collaborative process that makes the whole much more than the sum of its parts.
Learning on both sides occurred continuously. When a member of the SCT regarded a patient’s not eating as a natural point in the dying process, she was taught how important nutrition is for patients undergoing chemotherapy. Similarly, when the hospital staff became concerned that the SCT member was upsetting a patient and causing her to cry, they learned that the patient had requested the team’s help in preparing to tell her children about her prognosis. Tears were an appropriate part of that difficult discussion.
One of ICC’s early priorities for the project was to improve pain management for its patients. The SCT developed a Pain Care Path model that took into account not only pharmacological interventions, but also psychological and spiritual suffering. The model provided a decision tree to follow as well as guidelines and extensive information to guide assessment and management of pain. In addition, the team created a Pain Flow Sheet to document how a patient’s pain was being managed. Pain was assessed on every patient at each visit, something that had not occurred previously. These instruments were implemented beyond Project Safe Conduct to other parts of the ICC and University Hospitals, its satellites, as well as within the hospice.
"Physicians started to assess the patients. levels of distress and determine their psychosocial needs very early... . Even before anything happens
care, physicians now are attuned to dimensions of care that may not have previously
been in their mindset."
Project Safe Conduct enrolled a total of 233 patients with advanced lung cancer (Stage IIIb or IV). The composition of the SCT patients was 39% minority, primarily African American, and 49% female. All were receiving chemotherapy or radiation and some were enrolled in Phase I or Phase II clinical trials. Except for a few patients early on, virtually all eligible patients chose to participate in the pilot study.
Soon after a patient enrolled, the SCT met with the patient and family. From then on, team members were available throughout the patient’s care at ICC. Prior to Safe Conduct, the typical pattern was for a patient to see a doctor, perhaps to be given chemotherapy by a nurse and, if the patient was noticeably upset, to be referred to a social worker, psychologist or psychiatrist. With Project Safe Conduct, a patient and family had access to the nurse, social worker or spiritual counselor every time they came for a physician visit, treatment or procedure. The team was also available to patients and their families at other times when they had concerns or questions.
Team members represented different skills and personalities. ICC oncologist Dr. Nathan Levitan saw this as a big benefit, increasing the chance that the patients and their families would find a caregiver they could connect with emotionally. "Cancer care is a very intimate kind of care," said Levitan. "Patients talk about fear of dying, family gets involved and personalities need to click between caregiver, family and patient. If you only have one doctor doing all the interacting, you can’t meet all those needs - time-wise or in terms of personality style."
Not uncommonly, in talking to the patient, a member of the SCT discovered important information that might not otherwise have surfaced. In one case, a patient continued to report pain even though she had been prescribed a strong pain reliever. She subsequently revealed to the team’s social worker, with whom she had a close relationship, that she could not afford to fill the prescription and also pay her rent. An effective, but less costly, alternative was prescribed so she could manage both expenses.
The SCT monitored patients closely and met weekly as a team to update patients’ care plans. Team members were aware of news the physician would be giving a patient at an appointment and were available for support afterwards. A doctor might give the patient and family discouraging chemotherapy results and then add, "The team is here to help you." Before a physician appointment, an SCT member often talked to the patient and family, inquiring about pain and physical discomfort, assessing how well they were eating and sleeping, listening to caregiving issues and exploring emotional or spiritual concerns. They would alert the physician to important information that might affect the care plan.
Levitan said Project Safe Conduct introduced clinicians to a very different way to take care of patients. "Physicians started to assess the patients’ level of distress and determine their psychosocial needs very early," he said. "Even before anything happens with patient care, physicians now are attuned to dimensions of care that may not have previously been in their mindset."
Project Safe Conduct also included family conferences where the oncologist, patient, family and at least one member of the SCT discussed end-of-life options. In the past, if such conferences occurred at all, the discussions were left to the oncologist, who often felt uncomfortable dealing alone with the psychological and spiritual issues involved. "We have wonderful doctors, and they wanted to help," said Armour, "but they didn’t have the skill set or support to do it." Adds Levitan, "In medical school doctors are taught how to take a medical history, but no one ever taught us how to take a religious or spiritual history."
Increasingly, oncologists began to appreciate and rely on the services of the SCT. "It’s very lonely for the oncologist being the sole one in the room with the patient and family and everyone is looking at you asking, ‘can’t you help?’" said Armour. "So we put a group of people around them."
Levitan agrees that the program helped physicians as well as patients, educating them and also allowing them to be more efficient with their time, knowing the team could handle certain issues. He adds that it also helped physicians when they got overwhelmed by a patient’s or family’s needs. "In the past, a care provider might feel ‘this is driving me crazy’ and there was a tendency to become irritated with a family member. But with the team, a clinician can say: ‘I’m overwhelmed here. I need some help.’ Instead of seeing an annoying problem, it is interpreted properly as a sign of needing help, and there are resources to provide it."
"Project Safe Conduct brought an expertise into a cancer center that we really learned to value," said Willson, "and I think reciprocally, participating in a cancer center environment expanded the hospice members’ understanding. We grew together as a group and that was extraordinary."
"We took the marvelous opportunity to work with hospice to build
a new paradigm."
Perhaps the most surprising effect of the project was the cancer center’s embrace of the importance of spiritual support services. This included discussion of such issues as the meaning and purpose of the patient’s life, relationships and reconciliation.
When Armour and Pitorak developed the Project Safe Conduct grant proposal, Armour kept insisting that the budget was too tight to include a spiritual counselor. But Pitorak held firm, determined to make the position a critical part of the team. "I would roll my eyes," recalls Armour. "She was driving me nuts."
But Armour and her colleagues at ICC freely acknowledge that they came to regard spiritual care as one of the most important contributions of Project Safe Conduct, educating doctors and nurses to be attentive to something they typically ignored, and providing a highly valued service to patients.
One sign of the interest in spiritual care among oncologists and other ICC staff was the standing room only crowd for an ICC Grand Rounds on spirituality. ICC staff are continuing their interest in the effect of spirituality with an NCI-funded trial that randomizes patients to receive spiritual counseling or not.
Project Safe Conduct’s positive impact on patients and caregivers emerges in several areas, based on preliminary data comparing these patients to lung cancer patients receiving care at ICC a year prior to the introduction of the SCT:
Project Safe Conduct wanted to see if it could match the high quality of life scores reported in the literature for patients receiving hospice care. Data from the Missoula-VITAS Quality of Life Index, which are still being analyzed and interpreted, suggest that Safe Conduct patient perceptions may be as good or better.
Data were not kept on the length of time patients stayed in clinical trials, but some ICC staff are convinced that addition of the palliative services enabled some patients to stay in the trials longer.
Although the project was not directly evaluating costs, the reductions in hospital stays and emergency room visits clearly translate into reduced overall health care expenditures. The reduction in burden experienced by caregivers also probably leads to reduced health care costs, given studies showing an increase in use of health services by stressed caregivers.
The apparent financial savings align with enhanced quality and access to palliative care, said Willson, who notes that less frequent use of the emergency room and fewer hospitalizations reflect better patient management. “Our emergency rooms are very busy and not an ideal site for cancer care,” he said. "Safe Conduct patients used the hospital and ER less because there was a mechanism in place to anticipate and address problems as they arose."
The financial implications for the individual institution are less clear. Willson notes this but adds, “You have to make investments to realize benefits.” He also emphasizes that The Robert Wood Johnson Foundation Promoting Excellence in End-of-Life Care grant was critical to developing the program.
Armour is concerned that some institutions may be reluctant to make the investment and cites the need for a new formula for cancer care support that takes into account the range of needs of dying patients, and the costs averted by programs like Project Safe Conduct. “Cancer centers need to consider this an essential a part of our mission and take it as seriously as we do the charge to find a cure,” she said.
The Ireland Cancer Center believes so strongly in what it has accomplished that it is continuing the program beyond the Promoting Excellence grant. It hired the Safe Conduct Team so they can continue their work. "The culture here has been transformed," Willson said. He notes, for example, that early referral to hospice is now the standard of care. Project staff are also looking at how to extend the model beyond their tertiary care center to community-based providers affiliated with ICC. In addition, they have secured grants to pursue studies of issues that arose in the course of Project Safe Conduct, such as family communication and discord at the end of life.
"We have learned that palliative care is just good cancer care. We’re continuing Project Safe Conduct at Ireland because once you look at the data you just can’t take these services away," said Armour. Levitan agreed. "Project Safe Conduct is the ideal we should strive for with all of our patients."
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