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© 2003 American Society for Clinical Oncology
Simultaneous Care: Disease Treatment and Palliative Care Throughout IllnessFrom the Department of Internal Medicine, University of California, Sacremento, CA. Address reprint requests to Frederick J. Meyers, MD, Department of Internal Medicine, University of California, Davis Health System, 4150 V St 3100, Sacramento, CA 95817; email: fred.meyers{at}ucdmc.ucdavis.edu. CASE HISTORY Lyle is a 64-year-old corporate lobbyist who was noted to have a prostate-specific antigen (PSA) level of 12.3 ng/dL (normal < 4) during a routine health-care screening 8 years ago. Transrectal ultrasound biopsy showed adenocarcinoma of the prostate, with a Gleason score of 7. A radical prostatectomy confirmed the cancer, which had a surgical stage pT3N0M0. Lyle’s PSA level dropped to 0.1 ng/dL postoperatively; however, even though he was continent, he had erectile dysfunction (ie, impotence). Three years after surgery, his PSA level rose to 0.8 ng/dL. External beam radiotherapy was delivered to the prostatic bed, and his PSA level fell to 0.1 ng/dL over the following 6 months. Two years after radiotherapy, Lyle’s PSA level increased again, this time to 12 ng/dL. Androgen ablation was initiated and his PSA level decreased to 2.1 ng/dL. Lyle continued all of his normal activities but was slightly limited by a 10-pound weight gain, vaso-motor instability (eg, hot flashes), and mild fatigue. Thirty-two months after androgen ablation therapy, his PSA level increased to 57 ng/dL, and a bone scan showed two lesions in the pelvis. Lyle was then treated for 4 months in a phase II study. Lyle developed severe pain in the right shoulder and upper arm. His pain was controlled with methadone (40 mg orally every 8 hours), and radiotherapy was administered. Pain caused by a pathologic fracture occurred 3 months later. After orthopedic fixation, methadone dosage was reduced (to 5 mg orally tid), with nearly complete pain relief. When Lyle’s PSA level rose again, he enrolled in a phase I study. A bone-marrow biopsy was required for entry into the study. The biopsy showed metastatic adenocarcinoma of the prostate with most cells positive for p53 expression (using immunohistochemistry), consistent with a mutation in this tumor suppressor gene. Retrospective histochemistry of the prostatectomy also showed scattered cells with p53 expression. After 6 months of treatment, there was no evidence of tumor response. Lyle then enrolled in hospice care. Lyle’s social history is important. Lyle is married; he and his wife Margaret had just celebrated their thirty-eighth wedding anniversary when he was first diagnosed. He is the proud, if fairly demanding, father of five children. Two of his children are lawyers, one is a college professor, one is a housewife, and one, the youngest, is finishing her Ph.D. in information technology. Three of the five children live locally; the other two within 90 miles. Throughout his illness, all five children have expressed concern about their father’s condition and his care. Margaret has accompanied Lyle to almost all of his clinic visits after his initial diagnosis, joined by at least one of their children. Two of the children have been actively involved during these clinic appointments, particularly in regard to treatment options. Margaret has been a more reticent presence. She has spent the majority of her married life raising the children and has not worked outside the home. Throughout Lyle’s illness, Margaret has been overtly anxious, intermittently withdrawn, and deferential to health-care providers and family alike. SIMULTANEOUS CARE: PROGRESSIVE PALLIATIVE CARE, NOT CRISIS MANAGEMENT AT THE END OF LIFE Palliative care can be defined as the prevention and relief of suffering.1 Suffering has four components: physical, psychological, social, and spiritual. When defined this way, palliative care is applicable across the spectrum of cancer care and not merely at the end of life. The explicit acknowledgment and relief of suffering and distress needs to be a component of care in virtually all patient/physician/health system interactions.2 In fact, there has been considerable progress to make comfort-focused care routinely and readily available in hospitals and health systems.3,4 An example of this conceptual framework of integrated palliation in oncology is the intensive emotional support provided to patients with highly curable breast cancer. Postoperative pain relief following cancer surgery is another example of palliative care. We use Lyle’s case as an example to illustrate how the palliative component of medical care begins with the first contact and then grows substantially in importance over the disease course. During Lyle’s first visit with his urologic surgeon, Lyle and his family established that they wanted to know the truth about his condition. The family was told he had a 75% chance of cure, an estimate that was confirmed postoperatively, which is in part based on a previously published nomogram.5 The relatively late postoperative rise in the PSA levels is consistent with local recurrence only, even though current imaging techniques do not reliably detect small masses of prostate carcinoma in the pelvis. Fifty percent of these patients (ie, of all patients who have a late rise in PSA) will have long-term remissions or cure, while in the other 50% of patients, this late rise in PSA levels will be a harbinger of subsequent disseminated cancer. Given the uncertainty of outcome, we explicitly assured Lyle that whether or not his cancer recurred, we would provide the best care available. The explicit statement of nonabandonment meant that, in addition to providing state-of-the-art antitumor therapy, we could employ knowledge of symptom control in conjunction with thorough communication, sound relational skills, and psychosocial support.6,7 Such physician commitment was reiterated throughout Lyle’s illness. Lamont and Christakis8 have emphasized the important roles of the physician to both foresee (ie, know the future) and foretell (ie, tell the patient about the future). Even though scientific studies permit more accurate foreseeing (at least for populations), they do not permit accurate foretelling of an individual patient’s future course. Consequently, physicians must be able to communicate uncertainty while being able to deliver concurrent curative and palliative care to minimize patient distress. Although less used now, the phrase "we got it all" epitomizes the short-term advantage of physician "certainty" and ignores evidence-based uncertainty. Unless appropriate palliative care approaches are pursued when the cancer recurs, there is inevitable anger and frustration on the part of the patient when it becomes clear that we didn’t get it all. The diagnosis and the uncertainty of prognosis were sources of considerable distress for Lyle and his family. While he underwent therapy directed at the cancer, he also received care for his own physical distress and for the emotional distress that both he and his family felt. Palliative care for Lyle and his family consisted of more than raising long-range medical planning and mortality-awareness issues. Because we discussed and prepared for the full range of possible outcomes concurrently with curative therapy, Lyle and his family were able to maintain realistic hopefulness. By raising the reasonable, and increasingly likely, possibility that Lyle would die as a result of his disease, both he and his family were given the opportunity to contemplate and act on that information. By discussing these issues while anticancer treatment is ongoing, the difficult subject of dying could be discussed and acted on proactively, not reactively. Lyle could set his priorities, adjust his personal and professional relationships, and explore the big existential questions about life’s meaning and his life’s meaning as if he might be approaching the end of his life without the pressure, angst, fear, and hopelessness of a prognosis of death. Progressive palliative care enhances the patient/family comfort day-by-day and can promote more mindful and conscious living whether the future holds death, remission, or cure. Furthermore, this approach emphasized compassion as an integral part of quality care for serious or life-threatening illness. In other words, Lyle’s case illustrates how palliative care can be pursued simultaneously with disease-oriented therapy over weeks, months, or even years. CLINICAL RESEARCH: THE OPPORTUNITY TO INCLUDE PALLIATIVE CARE Pursuit of clinical trials presents a logical opportunity to combine palliative care with anticancer therapy while advancing the clinical research mission. In Lyle’s case, he became increasingly aware that there was no known way to cure his cancer. However, he was interested in participating in clinical trials that might help him live longer and that make a contribution to scientific advancement. It is important that patients and physician recognize the role of early clinical trials (ie, phase I and early phase II trials) in improving the care of future patients because there is often no expected benefit to the current patient- participant.9 Introducing palliative care principles early in Lyle’s care made offering a phase I trial a straightforward matter. He knew it wouldn’t cure him, but he was anxious for us to learn as much as possible to help both him and others. The physician researcher should not shy away from palliative care because of a false notion that the clinical trial will be impaired. For example, we have seen patients who receive optimal supportive care and sustain participation in investigational therapy despite toxicity because they received excellent palliative care. As Lyle’s clinicians, we acknowledged that we had two roles; one as cancer researchers and the other as trusted health-care providers offering guidance and support through the uncertain terrain of progressive and likely fatal disease. It is sad when these two roles are not pursued simultaneously and when important signposts are misread. Medical care then becomes disjointed and can become compartmentalized. When nobody "connects the dots," patient and family distress is exacerbated. The current practice of enrolling patients in hospice care only after all investigative therapy has ended is tragic. There are no regulatory barriers. However, such combined therapy does conflict with the conventional model of "first cure, then comfort." In addition, the Medicare Hospice Benefit that pays for 80% of hospice care in the United States is not designed to pay for the costs of clinical trials or of standard ad hoc chemotherapy. One can understand why most U.S. hospice programs require patients to have stopped systemic therapy before enrolling. Even if the hospice programs were willing to carry the economic risk, if the patient thinks that the investigational therapy will cure them, then there is a conflict between palliative care and investigational therapy. Nevertheless, pilot programs to demonstrate the feasibility of simultaneous care have been reported.10,11 These demonstration programs require the physician to tell the truth and require the incorporation of palliative care throughout the course of illness. As the recent report12 from the National Cancer Policy Board and the Institute of Medicine noted, provision of palliative care as part of comprehensive care in the nation’s cancer centers is a goal to be pursued. Asking patients to choose between the two good options of palliative care and systemic therapy is unnecessary. The criteria for hospice and investigational trials are similar—that is, advanced disease with no viable standard therapy. Most patients with advanced disease will need hospice care under the usual guideline of having a life-limiting illness (ie, 6 or fewer months’ survival is not a requirement). Patients should not be asked to choose between the two treatment options, but rather, they should receive both. At initial diagnosis and throughout treatment, we have no foolproof way of distinguishing those patients who are destined to die in short order from those with better survival, so both hospice/supportive care and chemotherapy are part of best care. One might ask whether the molecular biology information (ie, p53 expression data) obtained during the phase I trial proved useful in the care of Lyle and his family. The documented accumulation of gene alterations that lead to cancer and metastases indeed helped him and his family understand that the progress of his cancer had nothing to do with his willingness to "fight" or to "be aggressive." The mutation denoted by p53 positivity may be the cause of the cells’ ability to metastasize and survive hormone ablation.13 Lyle and his family were able to understand that concept and that we were doing everything possible to care for him. They were helped to understand that "the cancer failed to respond to treatment" rather than "the patient failed." We found many opportunities to integrate palliative care in the 8-year course of Lyle’s illness. To do that, we had to periodically inquire about Lyle’s evolving point of view. In so doing, we could incorporate disease management, symptom management, orthopedic fixation, and focusing on the family unit and end-of-life tasks into his clinical care. Such incorporation did not preclude us from coding and billing for visits in the usual way.14 In later stages, the focus of care and the tasks important to the patient were much more directed at quality of life and level of comfort than at cure or control.15 Lyle spent time during office visits and home visits describing life review or discussing issues of spirituality. He enjoyed these existential discussions, and we did, too. In addition, we never had to say, "there is nothing more that we can do." In retrospect, the pathologic fracture was a key clinical event. The patient and the family were able to see this event as a particularly important turning point. We were able to help Lyle see what this event meant in the context of his disease and his priorities. Consequently, our interpretation of this event enabled him to decide to retire from lobbying and to take the first of two trips to Europe while he still had nearly a year of life left. His focus on spirituality and his long-standing religious beliefs became more prominent. Another grandchild was born during this time, and Lyle was present at the birth; his mood improved considerably. He remained active in community affairs. Although Lyle continued to ask how long he had to live, and participated in a phase I clinical trial, he was also able to make plans in case we were not able to control the cancer. After 3 months in hospice, Lyle died. Simultaneous care allowed Lyle to engage in unhurried leave-taking in his relationships and made for a more orderly transition when he died. In addition, his family and friends are likely experiencing more adaptive and normal bereavement as a consequence of his progressive palliative care.
In conclusion, Lyle’s case is an example of how palliative care can be pursued simultaneously with usual oncologic approaches to treat cancer. This approach might be described as patient-centered care. The goals are dynamic, changing in emphasis as the disease evolves over time. The day-to-day pursuit of such a model (Fig 1
ACKNOWLEDGMENTS We thank Charles F. von Gunten, MD, PhD, Center for Palliative Studies, San Diego Hospice, and Moores Cancer Center, University of California, San Diego, CA, for assistance with the preparation of this manuscript. REFERENCES 1. Sepulveda CM, Yoshida A, Ullrich T: Palliative care: The World Health Organization’s global perspective. J Pain Symptom Manage 24:91–96, 2002[CrossRef][Medline] 2. Holland J: NCCN Practice Guidelines for the management of psychological distress. Oncology 13:459–507, 1999 (suppl)[CrossRef] 3. Meyers FJ: Perspectives on palliative care: A chair of medicine viewpoint. J Palliat Med 2:371–375, 1999[Medline]
4. von Gunten CF: Secondary and tertiary palliative care in US hospitals. J Am Med Assoc 287:875–881, 2002
5. Graefen M, Karakiewicz PI, Cagiannos I, et al: Validation study of the accuracy of a postoperative nomogram for recurrence after radical prostatectomy for localized prostate cancer. J Clin Oncol 20:951–956, 2002 6. Smith TL, von Gunten CF (eds): Optimizing cancer care—The importance of symptom management. ASCO Curriculum, 2001
7. von Gunten CF, Ferris FD, Emanuel LL: The patient-physician relationship: Ensuring competency in end-of-life care—Communication and relational skills. J Am Med Assoc 284:3051–3057, 2000 8. Lamont EB, Christakis NA: Some elements of prognosis in terminal cancer. Oncology 13:1165–1170, 1999[Medline]
9. Weeks JC, Cook EF, O’Day SJ, et al: Relationship between cancer patients’ predictions of prognosis and their treatment preferences. J Am Med Assoc 279:1709–1714, 1998 10. Meyers FJ, Linder J, Beckett L, et al: Simultaneous care: A model to resolve conflict between investigational therapy and palliative care. 38th American Society of Clinical Oncology Annual Meeting, Orlando, FL, 2002 11. Finn JP, Pienta KJ, Parzuchowski F, et al: Palliative care project: Bridging active treatment and hospice for terminal cancer. 38th American Society of Clinical Oncology Annual Meeting, Orlando, FL, 2002 12. Foley KG, H, (eds): Improving Palliative Care for Cancer. Summary and Recommendations. National Cancer Policy Board (NCPB). Institute of Medicine and the National Research Council, Washington, DC, National Academy Press, pp 78 13. Meyers FJ, Gumerlock PH, Chi SG, et al: Very frequent p53 mutations in metastatic prostate carcinoma and in matched primary tumors. Cancer 83:2534–2539, 1998[CrossRef][Medline] 14. von Gunten CF, Ferris FD, Kirschner C, et al: Coding and reimbursement mechanisms for physician services in hospice and palliative care. J Palliat Med 3:157–164, 2000[CrossRef][Medline]
15. Block, SD: Psychological considerations, growth, and transcendence at the end of life—The art of the possible. J Am Med Assoc 285: 2898–2905, 2001 Submitted January 7, 2003; accepted January 7, 2003. This article has been cited by other articles:
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Copyright © 2003 by the American Society of Clinical Oncology, Online ISSN: 1527-7755. Print ISSN: 0732-183X
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