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Journal of Clinical Oncology, Vol 22, No 10 (May 15), 2004: pp. 2008-2014 © 2004 American Society of Clinical Oncology. DOI: 10.1200/JCO.2004.11.003
Palliative Care Inpatient Service in a Comprehensive Cancer Center: Clinical and Financial OutcomesFrom the Department of Palliative Care and Rehabilitation Medicine, The University of Texas M.D. Anderson Cancer Center, Houston, TX Address reprint requests to Ahmed Elsayem, MD, Department of Palliative Care and Rehabilitation Medicine, Unit 8, 1515 Holcombe Blvd, Houston, TX 77030; e-mail: aelsayem{at}mdanderson.org
PURPOSE: Inpatient palliative care units are unavailable in most cancer centers and tertiary hospitals. The purpose of this article is to review the outcomes of the first 344 admissions to the Palliative Care Inpatient Service (PCIS) at our comprehensive cancer center. PATIENTS AND METHODS: We retrospectively reviewed our computerized database for clinical and demographic information, length of stay, and hospital billing during the first year of the service's operation. RESULTS: Three hundred twenty patients were admitted during the study period. Their median age was 57 years. The main cancer diagnoses were thoracic or head and neck (44%), gastrointestinal (25%), and hematologic malignancy (8%). The main referral symptoms were pain (44%), nausea (41%), fatigue (39%), and dyspnea (38%). The median length of stay in the PCIS was 7 days (range, 1 to 58 days). Fifty-nine patients died while in the PCIS. However, the overall hospital mortality rate was not increased compared with that in the year before the establishment of the PCIS (3.58% v 3.59%). The mean reimbursement rate for all palliative care charges was approximately 57%, and the mean daily charges in the PCIS were 38% lower than the mean daily charges for the rest of the hospital. Symptom intensity data showed severe distress on admission and significant improvement in the main target symptoms. Most patients were discharged to a hospice. CONCLUSION: The PCIS has been accepted in our tertiary cancer center on the basis of its clinical utility and financial viability.
Because of innovations in cancer care and increasing patient expectations, patients with cancer seek life-prolonging measures with growing regularity.1 Many of these patients suffer severe symptom distress, and some may die during their hospital stay while receiving cancer therapy. In recent years, palliative care has become recognized as a major component of cancer care in the United States.2,3 Most patients with cancer receiving treatment in comprehensive cancer centers4 and, more specifically, the majority of cancer patients in our area (Houston, TX)5 die while in an acute care facility. These findings suggest a growing need for interdisciplinary palliative care teams in hospitals. Palliative care programs improve symptom control and the overall quality of life of patients suffering from progressive diseases, and offer improved support for their families.6,7 Although the number of palliative care programs has clearly increased, their role is mostly limited to consultation and, rarely, ambulatory care.8-10 Inpatient palliative care services, in which the palliative care team assumes primary care responsibility, are lacking in most cancer hospitals. Herein we report on our first year of experience after the establishment of the Palliative Care Inpatient Service (PCIS) at The University of Texas M.D. Anderson Cancer Center (Houston, TX) and discuss the challenges we faced.
Our palliative care program began in 1999 with the establishment of an academic department providing clinical services through a mobile consultation service and ambulatory care center. This interdisciplinary team, which consisted of physicians, fellows, an advanced practice nurse (APN), a counselor, a chaplain, a social worker, a physical and occupational therapist, a nutritionist, and a pharmacist, began seeing patients in the ambulatory outpatient setting. In addition, a mobile team consisting of physicians, fellows, an APN, and, on occasion, a counselor, began performing consultations and follow-up visits on an inpatient basis. With this model of care, it became clear that many patients with severe distress seen both in the outpatient center and during inpatient consultations might benefit from primary care by our interdisciplinary team. A focus group was formed at M.D. Anderson Cancer Center consisting of eight oncologists who frequently referred patients to this new palliative care service, faculty and staff members from the palliative care team, and hospital administrators. This group addressed the needs of a subset of patients with terminal disease and complex physical and psychosocial problems complicating discharge. The referring oncologists identified their desire to maintain a relationship with these patients but to have the option of requesting that primary care be the responsibility of the palliative care team when appropriate. They identified inefficiencies, lack of expertise, and conflicting medical decisions when they retained the primary physician role with patients transitioning to a palliative focus in care. They acknowledged that the primary responsibility for patients under palliative care could be extremely stressful and frequently made them consider discharging patients who very much wanted to continue receiving care despite the fact that the intent of care was no longer curative. The group noted that many palliative care patients presented with symptom distress that would be difficult for community physicians to manage because of the severity of symptoms and the need for complex, interdisciplinary care. Some patients expressed feelings of abandonment when their needs could not be met, and patients with complex problems frequently returned to seek care in our Emergency Center. On the basis of the recommendations from this focus group and the experiences of our palliative care consultation service, the decision was made to establish the PCIS beginning in January 2002, with care administered within an existing inpatient oncology nursing unit. Referrals to the PCIS came primarily through transfers from other oncology inpatient services, with fewer referrals coming via admissions from our palliative care ambulatory clinic and the Emergency Center. The admission criteria for the PCIS included the presence of severe physical and/or psychosocial distress and/or family distress among patients with advanced or terminal disease. Eligible patients agreed to accept that care would be administered by the palliative care team. Most patients met the acute care criteria required for hospitalization. A do not resuscitate order was not essential for admission, and some patients received radiation therapy and, rarely, chemotherapy during admission. The interdisciplinary team meetings were held on a daily basis, during which clinical issues were addressed by the physician, fellow, and APN. The psychiatric nurse and chaplain discussed psychological issues, whereas the social worker addressed family issues, resources, and the patients' home situations. Most patients had a family meeting before discharge. The patients' demographic data, primary tumor site, main symptoms at the time of referral and discharge date for the first year of operation of the PCIS were retrieved from a hospital database; the length of stay was calculated using the same database. Data were collected for 1 year. The hospital mortality data for the first 8 months of 2002 were taken from hospital records and compared with those in the same period in 2001 (before the establishment of the PCIS). Symptom distress was assessed by reviewing the patients' charts to find consecutive patients admitted during the first 7 months of 2002. There were 218 eligible patients: 34 charts were not available, so 184 charts were reviewed. All patients capable of undergoing symptom assessment underwent evaluation of multiple symptoms using the Edmonton Symptom Assessment System.11 This 10-item instrument allows cognitively intact patients to report the intensity of their symptoms on a numerical rating scale from 0 to 10. In all patients, the assessment was given by the admitting physician, fellow, or APN. Patients were encouraged to answer at least the pain intensity question and as many of the questions regarding other symptoms as possible. The symptom severity on admission and before discharge, single main target symptom severity, and response of the target symptoms were recorded. In addition, administrative data related to the cost of care and length of stay were obtained for the first 8 months of 2002 and compared with all hospital inpatient discharge data for the same period in 2001. These administrative data were obtained only for the first 8 months because they are routinely organized by fiscal year rather than calendar year. Descriptive statistics were used to indicate clinical and financial outcomes for this patient cohort. Continuous variables were expressed as mean ± standard deviation, whereas categoric data were expressed as proportions. Differences in symptom severity during follow-up were compared using paired tests; sign tests were used when the data were not distributed normally.
There were 344 admissions and 320 individual patients admitted to the PCIS (Table 1). Their median age was 57 years, and most of them were white. The median length of stay in the PCIS was 7 days (range, 1 to 58 days), and the mean length of stay was 9.6 days. In contrast, the overall hospital median length of stay during this same period was 5 days. However, the majority of our patients were transferred from other inpatient services rather than directly admitted from our clinic or the Emergency Center. When the entire duration of hospitalization was included, the mean length of stay was 11 days. The most common primary cancer diagnoses in these patients were thoracic or head and neck, gastrointestinal, hematologic, and genitourinary cancers. Ten patients died on the day of admission.
Table 2 lists the mean symptom intensity on admission. One hundred forty-two patients were able to complete the pain assessment. Using a value of  5 as an indicator of severe symptom intensity, the major symptoms in this patient population were fatigue, pain, anorexia, and sleep disturbance.
The severity of target symptoms on admission (baseline) and 3 to 7 days afterward during follow-up are summarized in Table 3. Patients who died before the follow-up period and those who were cognitively impaired or otherwise unable to complete the symptom assessment were excluded. There was significant improvement in the patients' pain, fatigue, sleep quality, appetite, depression, and nausea ratings. Dyspnea did not show significant improvement in this cohort.
The disposition of the 256 consecutive patients admitted to the PCIS in the first 8 months of 2002 is summarized in Table 4. More than half of the patients were discharged to a hospice. Patients who had stable symptoms were discharged to undergo home hospice care, whereas patients who were more ill required discharge to inpatient hospice care. Fifty-nine patients (23%) died while they were in the PCIS. This number represents 13% of the total hospital deaths during the same period. Some patients with improved functional status were discharged to their home; some of these patients returned to receive additional cancer therapy.
The mortality data for the PCIS as well as the entire institution for 2001 and 2002 derived from the annual hospital records are outlined in Table 5. Comparison of the mortality rate and discharges in 2002 (after the establishment of the PCIS) and 2001 (before the establishment of the PCIS) revealed that the overall hospital mortality rate remained stable despite the deaths in the PCIS.
The mean daily charges in the PCIS were 38% lower than the mean daily charges for the rest of the hospital, as shown by data derived from the 2002 M.D. Anderson annual report (Table 6). The main payers were commercial insurers followed by Medicare and Medicaid. Eight percent of the charges were not collectable because patients were either indigent or enrolled onto clinical trials with a different funding source. The mean reimbursement rate in the PCIS was 57%. The collection rate from private insurers in the PCIS was 75%.
Patients with advanced cancer have a number of devastating physical and psychosocial symptoms requiring comprehensive interdisciplinary care.12-17 Because the majority of these patients ultimately die in acute care facilities, dedicated inpatient beds would allow palliative care physicians to administer treatment to those patients with the most severe physical and psychosocial symptoms. The increasing availability of cancer treatment even for patients with advanced disease suggests that more patients will require admission to acute care facilities. However, the current reimbursement arrangements under the Medicare hospice benefits make it unlikely that patients will be able to receive cancer therapy while enrolled onto a hospice program.18,19 Even if parenteral medications were readily available to hospice enrollees, the level of medical vigilance and access to laboratory and diagnostic imaging services required for these patients would make it unsafe to administer most cancer therapies to these patients within the existing hospice system. Our experience in operating a consult palliative service for 3 years strongly suggested that an inpatient palliative service would be well accepted by a large number of physicians. However, several questions remained regarding the impact of such a program on nursing satisfaction, reimbursement, length of stay, and hospital mortality rates. Our data reveal that the PCIS was rapidly adopted by a variety of oncology services. Adoption was far from universal, but at any given time, roughly 10 patients were admitted to the PCIS in our approximately 400-bed hospital. Future research should better define the characteristics of cancer specialists most likely to refer to palliative care, the attributes of referred patients compared with those of patients not sent for palliative care, and the health outcomes of patients who receive palliative care. Clearly, the interpretation of data from specialized palliative care programs will require consideration of referral bias, given that patients referred to an inpatient service or unit are likely to have much more severe symptom distress than are those cared for by their primary service.20 One of the challenges in establishing an inpatient palliative care service is determining the role of inpatient nursing. Our service proposed that the institution support the establishment of a specially designated unit, but we were asked to pilot the program in an already established inpatient unit that included other medical oncology services. After about 3 months of operation, we received significant feedback from the nurses indicating that they were under stress and frustrated by the addition of our service to their unit. A survey of these inpatient nurses identified a need for ongoing education as well as group counseling to deal with the increased number of dying patients. However, the overwhelming recommendation from the respondents was to remove our service from their unit. In particular, they cited their inability to meet the expectations and time demands of the patients' families, the emotional needs of the patients, and the care needs of highly debilitated and symptomatic patients. They felt particularly stressed by the patients' level of confusion and delirium and the change in medical practice used by our staff to treat these symptoms. The nurses also expressed a strong desire to focus on cure and highly technical tasks related to the administration of chemotherapy. Several nurses specifically indicated that they chose to work at our institution because of our mission, "making cancer history." These nurses questioned whether we were using resources that should be dedicated to patients whose disease could be cured. The nursing survey findings were a significant impetus for transitioning from a general nursing model to a specialty model in a designated unit. Seventeen months after initiating the PCIS, we opened a new unit designed specifically for the needs of palliative care patients and their families. A palliative care nurse manager recruited staff members who had chosen this specialty. We learned many lessons from this experience. Nurses who are strongly compelled by the mission "to eliminate cancer" may experience significant dissatisfaction with a palliative care service. In contrast, when nurses were given the option of working in palliative care, a substantial number of well-qualified nurses applied both from within and outside the institution. After several months of working in the designated unit, survey findings identified a high level of satisfaction among these nurses. Another concern was the impact of the PCIS on the hospital mortality rate. The hospital mortality rate is one of the most important outcomes used by reporting agencies such as U.S. News and World Report in ranking cancer centers and acute care hospitals.21 Only 23% of our patients died while in the PCIS. This rate is similar to the results reported by another palliative care unit20 but considerably different from the mortality rates in inpatient palliative care hospices, which usually range from 50% to 80%.22-24 Patients admitted to the PCIS underwent comprehensive management of multiple symptoms and active discharge planning. These results suggest that rapid symptom improvement, psychosocial support, and discharge planning are possible in acute care facilities without influencing the overall mortality rate in the cancer center. Future research should focus on the potential contribution of the PCIS to reducing the number of hospital readmissions and hospital mortality rate. Another major challenge we faced came from insurers. The reviewers often equated palliative care with hospice, thereby ignoring the medical record documentation that supported acute inpatient criteria. They often recommended that if inpatient-level palliative care could be justified, the reimbursement rate should be the same as the hospice inpatient rate. Awareness by the insurance companies of the existence of an inpatient palliative care program resulted in visits by their medical directors to validate our telephone reports and medical record documentation. These visits were useful, because the medical directors could meet our team and witness the high level of clinical complexity. Through our discussions, we conveyed our belief that we were not giving treatment to patients who would have previously been discharged to a hospice but instead were giving treatment to patients who would have been cared for in other inpatient units, including the intensive care unit. This observation is borne out in part by the fact that the inpatient mortality rate did not increase in the months after the PCIS opened. Although the pre-existing impressions of palliative care as hospice or step-down care created challenges, we have been successful in obtaining certification for acute levels of care and have not developed a reduced fee schedule for the PCIS. Our reimbursement data suggest that these programs are viable in similar comprehensive cancer centers as long as the admissions meet acute care criteria for third-party payers. Payne et al25 reported a cost saving of 40% after the establishment of palliative care. Our results are likely applicable only to institutions not financed by disease-related groups (DRGs). However, the principles of rapid symptom stabilization and discharge with no increase in the overall hospital mortality rate and the lower cost of care in the PCIS should make such programs viable in cancer centers financed by DRGs. For example, Walsh26 showed good reimbursement of palliative care services in his institution, which is financed through a DRG. It is essential to set parameters for an inpatient palliative care unit and differentiate it from an inpatient hospice. To meet acute care criteria, palliative care interventions may have to be initiated earlier while patients receive acute care and should be part of the active cancer care model rather than duplicate the hospice care model in hospitals. Many of our patients were transferred to our primary care service before a final decision was made regarding discontinuation of their cancer treatment and shifting them to comfort care. Some patients, whose symptoms and performance improved while in the palliative care service, did receive cancer therapy. This allowed us to help provide a smoother transition to comfort care and bridge the gap between oncology services and hospice care. This may be different from the traditional palliative-hospice model, in which comfort care is initiated only after all decisions regarding cancer treatment have been made. In countries with national health care systems, such as Canada, the two models are combined, and patients often stay in palliative care units for significantly longer periods.27 This is less feasible in the United States given the financial and regulatory restrictions of our payer system. Health economics analyses of the costs and benefits of palliative care services within the U.S. system are needed to support innovations in palliative care delivery. In May 2003, the M.D. Anderson Cancer Center established a dedicated Palliative Care Unit (PCU). The unit has 12 private rooms, a large family room, a conference room, a nursing station, and a large room for the team meetings and reports. In addition to the interdisciplinary team mentioned above, the PCU staff includes 18 full-time nurses who choose to specialize in palliative care, a nurse manager, and a clinical nurse specialist. These nurses have been trained to assess common symptoms in advanced cancer patients, using tools such as the Edmonton Symptom Assessment System and Mini Mental Status Examination, and also in counseling and support of the patients and their families. All patients were seen and observed by different members of the interdisciplinary team. Consultations with the primary oncologist were done on some patients and most of the PCU patients have a family meeting before discharge. Some patients also received massage, music therapy, and participated in mediation sessions. It is clear that the PCU has attributes distinct from the PCIS. Our study has a number of major limitations. For example, it was conducted retrospectively on the basis of the limited available clinical data. The absence of data on self-reported symptom intensity in this population is inevitable; this is particularly problematic in a retrospective study. In addition, patient and family satisfaction and follow-up into the community were not addressed. Finally, the characteristics of patients referred to the PCIS compared with those of patients not referred with regard to symptom distress, psychosocial support, and attitudes and beliefs about the referring oncology service were not measured. These are areas that should be researched further. In summary, our PCIS has been rapidly adopted, admits patients with severe distress, is capable of discharging the majority of patients, does not increase the overall hospital mortality rate, and is financially viable. These characteristics allowed our program to move forward with the establishment of a dedicated PCU to gain efficiency and further improve the care of this complex patient population.
The authors indicated no potential conflicts of interest.
Authors' disclosures of potential conflicts of interest are found at the end of this article.
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7. Hearn J, Higginson I: Do specialist palliative care teams improve outcomes for cancer patients? A systematic literature review. Palliat Med 12:317-332, 1998 8. Billings A, Pantilat S: Survey of palliative care programs in United States teaching hospitals. J Palliat Med 4:309-314, 2001[CrossRef][Medline] 9. Billings JA: Palliative medicine fellowship programs in the United States: Year 2000 survey. J Palliat Med 3:391-396, 2000[CrossRef][Medline] 10. Casarett DJ, Hirschman KB, Coffey JF, et al: Does a palliative care clinic have a role in improving end of life care? Results of a pilot program. J Palliat Med 5:387-396, 2002[CrossRef][Medline] 11. Bruera E, Kuehn N, Miller MJ, et al: The Edmonton Symptom Assessment System (ESAS): A simple method for the assessment of palliative care patients. J Palliat Care 7:6-9, 1991[Medline] 12. Emanuel EJ, Emanuel LL: The promise of a good death. Lancet 351:S1121-S1129, 1998 (suppl 2)[CrossRef]
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18. Gagnon B: Hospice use in Medicare beneficiaries with cancer. JAMA 290:1578-1579, 2003
19. McCarthy EP, Burns RB, Davis RB, et al: Barriers to hospice care among older patients dying with lung and colorectal cancer. J Clin Oncol 21:728-735, 2003 20. Bruera E, Neumann C, Brenneis C, et al: Frequency of symptom distress and poor prognostic indicators in palliative cancer patients admitted to a tertiary palliative care unit, hospices, and acute care hospitals. J Palliat Care 16:16-21, 2000[Medline] 21. Comarow A: America's best hospitals. US News World Rep 135:46-48, 90, 94, 2003 22. Zhukovsky DS: A model of palliative care: The palliative medicine program of the Cleveland Clinic Foundation. Support Care Cancer 8:268-277, 2000[Medline] 23. Kellar N, Martinez J, Finis N, et al: Characterization of an acute inpatient hospice palliative care unit in a U.S. teaching hospital. J Nurs Adm 26:16-20, 1996 24. Neumann C, Hanson J, Kuehn N, et al: Temporal distribution of deaths in cancer patients admitted to a palliative care unit. J Palliat Care 15:10-13, 1999[Medline] 25. Payne SK, Coyne P, Smith TJ: The health economics of palliative care. Oncology (Huntingt) 16:801-812, 2002
26. Walsh D: The Harry R. Horvitz Center for palliative medicine (1987-1999): Development of a novel comprehensive integrated program. Am J Hosp Palliat Care 18:239-250, 2001 27. Gaudette LA, Shi F, Lipskie T, et al: Developing palliative care surveillance in Canada: Results of a pilot study. J Palliat Care 18:262-269, 2002[Medline] Submitted November 4, 2003; accepted March 1, 2004. This article has been cited by other articles:
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Copyright © 2004 by the American Society of Clinical Oncology, Online ISSN: 1527-7755. Print ISSN: 0732-183X
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ABSTRACT
INTRODUCTION
