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© 2001 American Society for Clinical Oncology Patients With Cancer Referred to Hospice Versus a Bridge Program: Patient Characteristics, Needs for Care, and SurvivalFrom the Philadelphia Veterans Affairs Medical Center, The University of Pennsylvania Department of Medicine Division of Geriatrics and Division of Hematology Oncology, and the Institute on Aging and the Center for Bioethics, Philadelphia, PA. Supported by a Career Development Award from the Department of Veterans Affairs (D.C.).Address reprint requests to David Casarett, MD, MA, Institute on Aging, Center for Bioethics, University of Pennsylvania, 3615 Chestnut St, Philadelphia, PA 19104; email: casarett{at}mail.med.upenn.edu
PURPOSE: The purpose of this study was to compare the characteristics and needs of patients with advanced cancer who were referred to hospice with those referred to a prehospice "bridge" program that is staffed by hospice nurses. PATIENTS AND METHODS: Data were gathered through retrospective review of computerized clinical records using precoded data fields of 284 patients with cancer enrolled in a bridge program and 1,000 who enrolled in a hospice program. Patient characteristics, needs for supportive care at the time of enrollment, and survival were assessed. RESULTS: Bridge patients were less likely to have Medicare or Medicaid (43% v 72%; odds ratio, 0.30; P < .001) and were younger (69 v 73 years, rank sum test; P < .001), more likely to be married (59% v 43%; odds ratio, 1.90; P < .001), and more likely to be in the highest income category (14% v 10%; odds ratio, 1.77; P = .009). Bridge patients had at least as many needs for care as did patients in hospice. Bridge patients lived significantly longer (median, 46 v 19 days; log-rank test of survivor functions, P < .001). CONCLUSION: Patients referred to this bridge program had prognoses that are significantly better than those of patients who enter hospice, but they have needs for supportive care that are at least as great. These findings underscore the importance of initiatives to extend some of the benefits of hospice care to a wider population of patients and should encourage the analysis of similar programs’ ability to meet these needs.
AT EACH DISEASE stage, basic supportive care is an essential component of care of patients with cancer.1-3 Cancer patients undergoing curative or life-prolonging treatments who require more advanced supportive care are referred to dedicated palliative care units4 and palliative care consultation services.5-8 A rapidly growing field of research is beginning to provide data to guide treatment of cancer-related pain,9-13 delirium,14,15 dyspnea,16-18 and other symptoms. For patients who wish to maximize the quality of their remaining life rather than their lifespan, hospice offers comprehensive palliative care, including expert pain and symptom management; support for psychologic, spiritual, and social needs; as well as bereavement services.19-21 Unfortunately, most patients with cancer do not enroll in hospice until the last days or weeks of life. Estimates of the median length of stay in hospice are less than 1 month, 22,23 and updated national figures, which will be available soon, may be much shorter. The restrictive eligibility criteria for hospice certification, combined with physicians’ tendency to overestimate prognosis24,25 and patients’ desire to continue to seek life-prolonging therapies, leave some patients to rely on mechanisms other than hospice for fulfilling their palliative care needs.26 This trend may become more prominent as advanced palliative interventions are developed, many of which may be far too expensive for the typical hospice per diem reimbursement.9-11 The missed opportunities to provide palliative care that result are significant because growing evidence suggests that uncontrolled symptoms may lead some patients and their physicians to consider assisted suicide.27-29 Therefore, to serve the majority of patients with refractory cancer and their families, new and creative mechanisms of providing multidisciplinary supportive care will have to be developed.30-32 One such mechanism is a prehospice or "bridge" program. These programs provide some of the services offered by hospice, and eligibility is not usually restricted by requirements of a 6-month prognosis or a willingness to forgo life-prolonging therapies. Bridge programs introduce interdisciplinary supportive care to patients with advanced cancer or other illnesses and use personnel trained to meet the wide range of needs that these patients and their families have. Ideally, these programs provide a smooth transition, or bridge, to hospice and can contribute to a good death in ways that patients value: by preserving independence and control and by managing symptoms aggressively.33-35 Although these bridge programs are the focus of considerable interest, the literature does not yet include a systematic report of their activities. For instance, it is not known which patients would enroll in such a program, what considerations affect their choice, or how these patients might be different from those who choose to enroll in hospice. Nor is it known how the care needs of patients who choose bridge programs compare with the needs of patients who choose hospice. Finally, it is not known whether patients who choose a bridge program have a better prognosis than do those who choose hospice. Taken together, these questions have profound implications for the development and reimbursement structure of bridge programs and for a possible reconsideration of hospice eligibility criteria. For instance, if both groups of patients are similar and have similar needs for care, this would suggest that funding for bridge programs should be restructured to provide those additional services that are offered by hospices. In addition, a finding that survival times in these groups are similar would provide support for arguments in favor of relaxing the 6-month prognostic requirement for hospice eligibility to allow the inclusion of a wider spectrum of patients who might benefit. To answer these questions, this paper reports one hospice’s experience with a bridge program that was designed to extend certain hospice services to a broader population of patients with cancer who have a prognosis of 1 year or less. We compare patients who enrolled in the bridge program with those who enrolled in hospice in terms of their demographic and clinical characteristics, needs for care, and survival. We conclude with a discussion of the implications of these results for program development and health care policy.
Description of Hospice and Bridge Programs The organizational home for both the hospice and the bridge programs described below is a not-for-profit metropolitan home-hospice program that was founded 18 years ago. The hospice has recently affiliated with the University of Pennsylvania Health System (UPHS). The hospice is Medicare certified and provides a full range of federally mandated hospice services to patients with public and private insurance, as well as to those who are uninsured. Two programs administered by this organization, hospice and the bridge program, are described in detail following.
Hospice Patients referred to hospice must meet eligibility criteria, defined in Medicare hospice legislation36 and by the Health Care Financing Administration, as they are interpreted by the fiscal intermediaries that reimburse hospice programs. Under Medicare hospice eligibility criteria, the patient must be entitled to Part A of Medicare and must have written certification by the attending physician and the hospice medical director that "the individual’s prognosis is for a life expectancy of 6 months or less if the terminal illness runs its normal course."36 For patients with noncancer diagnoses, a number of other specific requirements apply. Each interdisciplinary hospice team includes a nurse, social worker, chaplain, volunteer coordinator, and hospice physician. However, the referring physician remains the attending physician for his or her patients. All professional team members participate in continuing education in end-of-life care through hospice-sponsored seminars, inservices, meetings of national organizations, and weekly interdisciplinary team meetings. All members of the team visit the patient at home, except the physician, who visits only as requested. Hospice nurses make approximately two to three visits per week, or more as needed. Similarly, social workers and chaplains see patients every 2 weeks, or more often as necessary. Patients and families are offered the services of a volunteer, as well as a home health aide who is available up to 2 hours a day and 7 days a week. Referrals to other therapists and specialists are provided as needed (eg, speech, physical or occupational therapy; nutritional counseling; psychiatry). If a patient requires inpatient or respite care while on hospice, the team continues to be responsible for the patient’s plan of care and continues visits. Home health aide services also continue during respite stays. One year of bereavement care is included, with phone contacts, written materials, large and small support groups, and individual counseling. A special program is available for bereaved children. The hospice benefit also pays for durable medical equipment and all medications and treatments related to the terminal diagnosis. There is a nominal copay for medications, which can be waived.
Bridge Program Unlike the usual home health program, whose staff may not have extensive experience in caring for patients near the end of life, the central feature of this bridge program is that patients have regular contact with a hospice-trained nurse who is also caring for a panel of hospice patients. Each nurse usually cares for only one or two bridge patients and eight to 10 hospice patients at any one time. The management of patients on both the hospice and the bridge program is discussed at biweekly interdisciplinary care conferences. For patients in the bridge program, the nurse typically makes home visits two to three times per week. The nurse communicates regularly with the patient’s primary care provider, who continues to be responsible for the patient’s care. Visits from a hospice social worker, physical therapist, and home health aide are provided subject to the approval of the patient’s insurer. Most patients are approved for at least one, and often two, social work visits during which the social worker refers patients to community resources, assesses finances, or initiates advance care planning. Home health aide visits are normally approved for three times a week. Although the hospice medical director is available for consultation, he or she does not take an active role in patients’ care, or make home visits. Volunteer and chaplain services are not provided.
Marketing of Hospice and Bridge Programs
Financial Aspects of Hospice and Bridge Programs The insurer reimburses services provided to patients in the bridge program individually, as they would under a home care program not affiliated with a hospice. For instance, nursing visits are reimbursed as skilled care visits, and social work, physical therapy, or other services are billed separately. Durable medical equipment, medications, or treatments are not covered unless separately approved by the insurer.
Data Collection and Analysis All patients with a first admission to the bridge program between January of 1997 and January of 1999 were included in this study. This time period was chosen because of concern that a federal investigation of hospices in 199721,37 may have changed the way that eligibility determinations were made and the way that patients decided about whether to enroll in the hospice or the bridge program. Therefore, charts were reviewed only for patients admitted after this time to hold constant any effect this investigation may have had. All those patients admitted during the study period either had died or been discharged at the time of data analysis. All data described in this study were extracted from computerized records using precoded data fields, which obviated the need for chart review and abstraction. Patients’ needs for care were identified by the categories of problems and interventions that are used to develop plans for care. These needs do not reflect the presence of a symptom or problem but rather the presence of a problem for which an immediate intervention is required of the care team. For instance, a patient admitted to either program with pain would only be coded for this need if a change in management were required. These needs, and the other variables reported here, were defined at the time of the patient’s enrollment. Most variables were naturally coded in patient records as dichotomous, such as the presence of a do-not-resuscitate (DNR) order, or as ordinal (eg, income ranges). Either odds ratios or the rank sum test were used to compare the characteristics of patients in hospice with those in the bridge program and the proportion of patients in each who had various needs for care. To compare the survival of the two groups, survival times were calculated from patients’ enrollment in either hospice or the bridge program. Patient observations were censored at the time of their last contact with any program administered by this hospice, and Kaplan-Meier survival functions were calculated and compared using the log-rank test. Stata software (Stata for Windows, version 5.0; Stata Co., College Station, TX) was used for all statistical analysis.
During the study period, 284 patients with a primary diagnosis of malignancy enrolled in the bridge program, and 1,000 enrolled in hospice. The characteristics of these patients and their primary diagnoses are summarized in Tables 1 and 2, respectively. These patients were referred by a total of 457 physicians. Of these, 35 physicians referred only to the bridge program, 303 referred only to hospice, and 119 referred to both. One hundred thirty-two of 284 bridge program patients (46%) were referred by an oncologist, compared with 351 of 1,000 hospice patients (35%).
Several differences between bridge and hospice patients were noted. For instance, patients in the bridge program were less likely to have indicated a desire to forgo life-sustaining treatment, as with an advance directive (19% v 37%; P < .001) or DNR order (46% v 65%; P < .001). Patients who enrolled in the bridge program were less likely to have Medicare or Medicaid (43% v 72%; P < .001), were younger (median age, 69 v 73; rank sum test, P < .001), and were more likely to have incomes in the middle (56% v 49%; P = .015) and high (14% v 10%; P = .009) ranges. Patients in the bridge program were also more likely to be married (59% v 43%; P < .001) and were more likely to have a caregiver living with them (77% v 66%; P < .001). Patients in the bridge program and those in hospice had substantial and diverse needs for supportive care ( Table 3). Bridge patients had a mean of 3.9 needs (range, 0 to 9), and hospice patients had a mean of 2.9 needs (range, 0 to 7; rank sum test, P < .001). Most of these needs for care were at least as common in the bridge program patients as they were in hospice patients. For instance, these two groups had similar needs for management of incontinence, feeding tubes, and ostomy or wound care, as well as management of dysphagia, nausea, and dyspnea. These groups also had similar needs for psychologic support for both patients and for their families.
However, several needs for care were more common among bridge program patients. For instance, bridge program patients were more likely to need supportive care for several symptoms, including edema (9% v 2%; P < .001), constipation (10% v 6%; P = .04), and pain (62% v 54%; P = .02). Bridge program patients were also more likely than hospice patients to need management of i.v. medications (24% v 10%; P < .001). Of 284 patients in the bridge program, 168 (59%) went on to enroll in hospice, 74 (26%) were discharged, 39 (14%) died while in the program, and 3 (1%) enrolled in a home health service. Of all 1,284 patients identified, the date of death could be determined for 258 (90%) of patients who were initially referred to the bridge program and for 961 (96%) of patients who were initially referred to hospice. The median survival for bridge program patients was 52 days (range, 1 to 568), and the median survival for hospice patients was 20 days (range, 1 to 570; rank sum test, P < .001). Of bridge program patients, 247 (87%) lived less than 6 months after their initial referral, whereas 938 (94%) of hospice patients lived less than 6 months (odds ratio, 0.43; confidence interval, 0.28 to 0.66; P < .001). The life expectancy of bridge program patients, expressed as a Kaplan-Meier survivor function, was significantly greater than that of hospice patients (log-rank test, P < .001; Fig 1).
As attention is focused on end-of-life care and on ways to ensure that a broad range of patients have access to quality care, a variety of programs are likely to assume an increasingly significant role.30,32 These data suggest that bridge programs will also have an important contribution to make in providing supportive care to cancer patients with advanced cancer. In fact, there is reason to believe that bridge programs will assume an increasingly important role in the care of these patients. For instance, bridge programs may become more attractive to patients with advanced cancer as second- and third-line line chemotherapy agents proliferate. These agents offer small but significant chances to improve life expectancy, but patients with advanced cancer who would like to explore these therapeutic options find that they must forgo hospice care to do so. Indeed, as long as hospice requires patients to forgo treatment with these agents, there remains a powerful disincentive for oncologists and their patients to consider hospice, and referrals may be further delayed. For these patients, bridge programs will offer an attractive compromise. If this explanation is supported by future research, it predicts a growing need for bridge programs to meet the needs of these patients. Bridge programs may also be attractive to patients enrolled in phase I trials, who may see the trials as another potential life-prolonging care option.38 Such patients clearly have limited prognoses. Therefore, they and their families might benefit from both the nursing and the social work interventions available in a bridge program run by a hospice. However, the findings of this study suggest that several questions will need to be answered if bridge programs are to be widely adopted. For instance, it will be important to understand why some patients enroll in bridge programs while others enroll in hospice. This study found several differences in the characteristics of patients in these programs. Some of these, like the lower prevalence of DNR orders and advance directives in bridge program patients, are not unexpected. These are indications of a desire to avoid some or all life-sustaining treatment, and it is reasonable that these were more common in hospice patients. However, other differences are less easily explained. For instance, these data indicate that bridge patients had higher incomes, and that they were more likely to have private insurance. They were also more likely to be married and to have caregivers living with them at home. Taken together, these data describe a population of patients who have more comprehensive social and financial resources for care than do patients who initially enroll in hospice. These patients may choose the bridge program because they do not feel that they need services, like daily home health aides, that are provided by hospice. Alternatively, they may have the financial resources to be able to purchase these services themselves, without recourse to the hospice benefit. Nor is it known what role financial considerations played in physicians’ and patients’ choice between hospice and the bridge program, and several possibilities deserve investigation in future studies. For instance, some patients who required costly palliative treatments, such as radiation therapy or certain palliative treatments,9-11 might have been referred to the bridge program rather than to hospice because the daily cost would far exceed the hospice $100 per diem.36 Conversely, patients who might wish to pursue life-prolonging measures but who cannot afford the needed durable medical equipment, daily home health aide, or pain medications might have chosen hospice, which would have covered these expenses.36 Further research is needed to examine the choices that patients and their families make and the factors that influence decisions to enroll in hospice or in bridge programs like the one described here. It will also be important to determine whether bridge programs and hospices are equally effective in meeting needs for care. Certainly studies have demonstrated a wide variability in the ability of other systems of care to meet palliative-care needs, and it is not certain that this bridge program is effective.39-42 This question is important because patients in the bridge program had needs for care that were as great, or greater than, those of hospice patients. Home health agencies may be prepared to meet some of these needs, like those related to i.v. therapy. However, others, like the need for psychologic interventions for patients and their families or advance care planning, may be outside the expertise of many home health nurses. Future research should determine whether bridge programs are able to meet these needs adequately, including needs for pain and symptom management. This work should build on the results of assessments reported in this report by using validated instruments that allow clinicians to assess the presence of symptoms, as well as the patients’ perceptions of symptom distress.43,44 Although data on satisfaction are routinely collected from bereaved families of hospice patients, future studies should also compare patient and family satisfaction, as well as clinicians’ perceptions of their patients’ care in hospice and bridge programs. It will also be important to understand why patients in this bridge program, which had broad prognostic requirements, had such short survival times. Hospice’s requirement of a prognosis of 6 months or less discourages physicians from referring until late in patients’ illness course.3,22,24,26 However, this bridge program permitted a much more optimistic prognosis of up to 1 year. It is not clear, therefore, why these bridge patients were still referred quite near to death. It is possible that these patients did not have skilled nursing needs until late in their illness course, but this is unlikely given the relatively broad meaning of a skilled nursing need. It is also possible that physicians’ prognostic estimates are so optimistic that even a survival of 1 year leads many physicians to delay referral. In addition, the housing of the bridge program in an organization known for its hospice may have induced some clinicians to refer patients who they believe are appropriate for hospice to the bridge program instead to avoid any stigma perceived to be associated with hospice. Further research that employs qualitative interviews of patients and physicians is needed to examine these explanations. These interviews should also include the views of nurses, hospital discharge planners, and other office personnel, who may significantly affect referral patterns. In summary, these data demonstrate that a program with broad inclusion criteria can effectively attract a diverse patient population with substantial needs for supportive care. If these programs are true "bridges" to hospice, they offer substantial promise. Indeed, if it is possible to obtain approval for several weeks of skilled care for a patient with cancer, and if this brief intervention provides a patient with access to a hospice-trained nurse and social worker, it may be possible to begin important work of symptom assessment and advance care planning. Further research is required to determine the effectiveness of this strategy. However, the possibility of extending supportive care and hospice expertise to a broader population of patients is worthwhile and deserves close attention in both research and policy.
We thank Priscilla Kissick, David Mintzer, MD, and the staff and patients of Wissahickon hospice.
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Copyright © 2001 by the American Society of Clinical Oncology, Online ISSN: 1527-7755. Print ISSN: 0732-183X
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ABSTRACT
INTRODUCTION
