Part 2



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Improving Palliative Care for Cancer Part 2

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Improving Palliative Care for Cancer This page in the original is blank.

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Improving Palliative Care for Cancer 2 Reliable, High-Quality, Efficient End-of-Life Care for Cancer Patients: Economic Issues and Barriers Joanne Lynn, M.D. RAND Center to Improve Care of the Dying Ann O’Mara, R.N., Ph.D. Bethesda, MD INTRODUCTION Living with, and eventually dying from, a chronic illness ordinarily runs up substantial costs for the patient, family, and society. Patients are sick, dependent, changing, and needy. Indeed, more than two dollars of every eight spent in Medicare is spent in the last year of life, and one in every eight is spent in the last month (Lubitz and Riley, 1993). Those with cancer have approximately 20 percent higher than average costs (Hogan et al., 2000). High costs probably would be acceptable to all if patients and families were satisfied with the care provided for those with advanced disease, but few can count on being satisfied. Reports of inadequate symptom relief, uncertain responsibility for patient care across multiple care providers, family disruption and financial distress, inadequate planning ahead for serious disability and death, and other shortcomings are commonplace (IOM, 1997). In short, our society is spending a great deal and not getting what dying cancer patients need. Many factors contribute to these shortcomings: inadequate attention to the problems, untrained professionals, absent quality standards, and so on. This chapter addresses the contribution to the shortcomings made by the financial arrangements covering care for people with advanced cancer. Changes in financing and coverage will not, on their own, change the standards of care (Vladeck, 1999), but changes in financing and coverage are an essential part of sustainable, comprehensive reform. Engineering a

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Improving Palliative Care for Cancer society for better performance requires paying for the essential services at least well enough to allow their providers to make a living. Indeed, financial incentives probably shape professional and public definitions of appropriate care in ways that are hard to trace or to correct. However, understanding these incentives and the distortions they engender is essential when aiming to engineer effective reform. Briefly, the population of concern is those persons who have advanced malignancy (solid cancers, hematologic malignancies, brain tumors, and others) at such a stage that the patient does not feel well on his or her usual day and the malignancy is not expected to remit substantially before contributing to the patient’s death. Not all such patients are given the label of “dying.” For example, those who may live many years with an indolent cancer, like the usual prostate cancer, or those with a small chance of remission from ongoing aggressive treatment, might not seem to be dying. Furthermore, not all dying cancer patients actually fit this definition; those with other serious conditions that are likely to cause death before the cancer would might well be dying, though their cancer is only a minor problem (Figure 2-1). FIGURE 2-1 The population with advanced cancer.

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Improving Palliative Care for Cancer Once, virtually every serious illness, including cancer, spelled a fairly rapid course to death. Malignancies were identified only when large or in a critical location, and most often, no treatments were available that substantially altered the course. The fact that cancer patients often lingered a few months, often with disturbing appearance, odors, and suffering, undoubtedly contributed to cancer’s special position of abhorrence in the popular mythology. Now, patients with cancer often live much longer because of better prevention, earlier diagnosis, and treatments that prolong survival, resulting in longer periods of adaptation to cancer as a chronic debilitating disease. However, most still eventually die from the cancer. In fact, mortality from lung, breast, prostate, and colorectal cancers, for example, is not much better than it was 50 years ago (ACS, 2001). Most, too, face discontinuities and other lapses in quality of care at the end of life. The fact that many will suffer at the end of life from the shortcomings of current care patterns probably arises mostly from our inexperience, as a society, with our new circumstances. As part of our collective inexperience, we have not settled upon language, categories, or methods that serve us well. We persist in talking of “terminal cancer” or “the shift from cure to care” as if these were obvious, natural categories, though they are not. Myriad studies of treatments use prolonged survival as the end point; in contrast, only a handful of studies aim to find ways to improve quality of life, opportunity for life closure, family togetherness, financial well-being, or symptoms. This chapter describes the following general findings and offers suggestions as to how to improve the experience of end-of-life care for patients with cancer: End-of-life care is unavoidably expensive, largely because people are very sick. The services most needed are often not covered by Medicare or other insurance, and the services most well-covered may well be overused. The transfers that patients endure among care providers might be much more avoidable if continuity were valued. The Medicare hospice program could be modified in various ways to improve its usefulness. Very little reliable and generalizable information advances the discussion of financing of end-of-life care. Since we are focused upon those at the end of life, this chapter does not deal with the costs of diagnosis or initial treatment, and since the focus is on cancer care, it does not deal with the effects of comorbidities, although the economics of both earlier care and care of other conditions profoundly affect the economics of cancer care.

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Improving Palliative Care for Cancer CURRENT FINANCING OF ADVANCED CANCER CARE Private insurance or Medicare covers most of the medical care expenses of people with advanced cancer. Most people with Medicare coverage have expanded benefits (through Medicaid, private pensioners’ insurance, or Medigap insurance) that often cover some prescription drugs (Commonwealth Fund, 1998) and also cover most of the deductibles and coinsurance. Since Medicare is the largest and the only nationally uniform coverage plan and the majority of people with cancer are over 65, Medicare will be used as a prototype. Medicare Coverage and Design Medicare (in fact, most health insurance) was constructed mainly to make surgery available, and its coverage and financing rules reveal those roots. Although managed care has been introduced and covers a growing portion of the Medicare population, most Medicare payment is currently in the fee-for-service system, in which payment arises as reimbursement for services already given. Medicare fee-for-service provides reasonably well for procedures needed for diagnosis and treatments aimed at disease modification. Coverage extends not only to surgery, radiation treatment, diagnostic testing, and in-patient hospitalization, but also to intravenous medication, skilled nursing for the homebound and those in nursing facilities, oxygen (for those with severely low oxygenation), and durable medical equipment. Medicare also offers hospice; indeed, Medicare pays for 65 percent of all patients receiving hospice care in the United States (National Hospice and Palliative Care Organization, 2001). However, Medicare was originally established for diagnosis and treatment of diseases. The language of the hospice benefit (and the parallel language in the preventive services benefit added later) can be read to imply that assuaging symptoms and supporting the very sick was not part of the original Medicare mandate. Since clinical practice has moved strongly toward incorporating palliative care into routine health care, this interpretation may become irrelevant. However, it may also eventually require modification of the enabling statute. Medicare (and most insurance) does not generally pay for medications that the patient can take on his or her own, personal care assistance, or disposable supplies. These restrictions are felt all the more keenly with the shift of cancer care to the outpatient setting, greater demands on family caregivers to administer both oral and parenteral medications, and the increasing use of home-delivered chemotherapeutic agents. Furthermore, fee-for-service payments generally have incentives contrary to continuity and do not pay for institutional care outside of hospitals.

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Improving Palliative Care for Cancer A small proportion of Medicare patients and a larger proportion of younger patients are in capitated care systems, in which a provider or insurer receives a set amount of money each month for every member regardless of how much care is provided. In general, these arrangements do not pay the fiscal risk-taking entity better for a patient who is sick, since rates are set “per capita” for a population. (Risk-adjusted payments are being implemented in the Medicare capitated payment system; Iezzoni, 1997). However, capitation also allows much more flexible use of the funding and thus can cover medications, personal care, and other elements not generally covered in Medicare fee for service, if the insurer decides to offer those benefits (to attract enrollees). Capitation undoubtedly creates pressures to reduce services generally, but the one careful study of the effects of provider or payer type on the costs of the last year of life for the frail elderly found no differences between Medicare health maintenance organizations (HMOs), traditional fee for service, and Medicare-Medicaid dual eligibles (in California, in 1990–1993) (Experton et al., 1999). Innovative approaches that combine elements of these approaches are not hard to find. Some benefits managers are “carving out” care of cancer patients and handling them as a separate capitation to specialists, for example. Hospice The most substantial innovation to serve advanced cancer patients is hospice. The Medicare hospice benefit mostly pays the hospice provider organization a daily rate for each patient enrolled and served at home. A small proportion (by law, less than 20 percent) of the days that Medicare pays to hospice providers can cover continuous nursing care, inpatient respite stay, or inpatient symptom management. The services that hospices provide include many elements that are not typically part of Medicare coverage: for example, interdisciplinary team, care planning, personal care nursing, family or patient teaching and support, chaplaincy, medication (with a small copayment), counseling, symptomatic treatment, and bereavement. The attending physician services either are paid within the hospice benefit (if the physician is a hospice employee) or are paid upon a separate billing from the physician to Medicare. Hospice pioneers did not envision hospice as a part of routine health care, although this is what it has become. More than half of Medicare beneficiaries dying with a cancer diagnosis used at least some hospice care in 1998 (Hogan et al., 2000). However, the ways in which hospice programs are not parallel to (or integrated with) other health care programs are evident. For example, under Medicare, hospice programs may serve only patients enrolled specifically in the hospice benefit (which restricts

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Improving Palliative Care for Cancer other types of care they can receive, as discussed below). Even if hospice skills would be useful to other patients, no payment is available, and in some circumstances, the services cannot even be provided for free (since it might amount to an illegal inducement to enroll). As another example, the interface of hospice services and nursing home care has been quite unsettled. Only a minority of nursing home patients has their stay reimbursed by Medicare (only after a qualifying hospitalization and if requiring skilled services). In general, Medicare reimbursement for skilled nursing home stays is high enough that the few patients who do qualify are not even offered the opportunity to enroll in hospice (only either skilled nursing home care or hospice can be in effect at one time). However, most nursing home stays do not qualify as “skilled” and thereby do not qualify for Medicare payment. These patients are often eligible for hospice services if a qualified hospice works out a relationship with the nursing home. However, two problems complicate the integration of nursing home reimbursement and hospice. First, both the nursing home and the hospice are independently required to establish and implement a plan of care, and it is not clear how conflicts should be resolved. In addition, most such nursing home stays end up being paid by Medicaid. This could offer an opportunity for paying almost double the nursing home rate (by adding the hospice benefit payment to the nursing home payment). Many observers were skeptical that such patients would receive twice as much service, thus raising the possibility of improper profits. While the situation is unstable, the current resolution is that a Medicaid-enrolled patient in a nursing home (who is not using Medicare skilled nursing facility benefits) who is also eligible for hospice can enroll in hospice if the nursing facility and the hospice have a legal agreement as to their responsibilities, the hospice provides certain core services directly, and the hospice accepts the full payments from Medicaid and Medicare and pays the nursing home. When hospice started in this country, it was a movement that rejected mainstream medicine. The Medicare hospice benefit perpetuated this concept by making hospice quite separate from the rest of health care. Now that hospice is used as mainstream care, unanticipated troubles arise from the many dysfunctional junctures between hospice and the rest of health care, such as the interface with nursing homes or patients still not in hospice care. Once committed to hospice care, the major problems that affect most patients arise from restrictive and varying enrollment criteria, substantial variation in service array and financial risk taking across hospices,

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Improving Palliative Care for Cancer short stays, and increasingly costly options for palliative care. Hospice Enrollment Criteria Medicare allows hospice enrollment only for patients with a “prognosis of less than six months” who formally consent to forgo curative medical care. These requirements ensure that hospice enrollment is seen as a substantial decision to pursue a death-accepting course. The sense that one is giving up on hopefulness makes some patients resist enrollment. The hospice requirement of a six-month prognosis has itself been quite troubled. Oddly, the requirement has never been defined. Is the “just barely qualified” patient just “more likely than not” to die within six months, or should that patient be “virtually certain to die”? This may sound like an arcane issue, but the population that includes everyone who is more likely than not to die from a chronic disease within six months is probably two to three orders of magnitude (100 to 1,000 times) larger than the population of persons who can be known to be virtually certain to die. In addition, requiring virtual certainty also engenders eligibility for hospice only within a few days or weeks of death, since our prognosticating ability is simply not precise enough to allow confident prognosis until the patient is visibly failing, bed-bound, and worsening daily (Fox et al., 1999; Lynn et al., 1997). Fraud investigations for long-stay hospice patients in the past few years have induced an attitude of caution and a reticence to take on patients who might stabilize and live a long time. Until these fraud investigations, when a very sick patient did stabilize and live, most hospices would just keep the patient enrolled, knowing that the illness would eventually worsen again and cut life short. Now, such patients are likely to be discharged from hospice. Their “next-best” service array is often quite limited (as discussed below). Providers and patients expect much the same services to be available from all programs within each kind of provider. For example, we expect every hospital to have a laboratory and X-ray facilities, operating rooms, inpatient beds, and so on. Indeed, we expect that most hospitals would profess their own competence and scope in just about the same ways as other hospitals. Hospices are different. Right from the start, they were allowed to define their own scope of practice, within broad boundaries. Thus, some hospices will not take patients using feeding tubes, while others not only will take those patients but would also allow tests and medications to keep a patient eligible for transplantation. Some hospices won’t take any patient on “chemotherapy,” but others will try to accept those with “palliative” treatments (but not those “still aiming at cure”). These terms have

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Improving Palliative Care for Cancer become quite difficult to define, but the point here is that, as long as they are honest with patients and others, hospices are free to define their scope of service and enrollment criteria and thereby to limit or expand their financial risks. This has led to neighboring hospices having quite different practices, populations, and skills. Since they all are paid the same capitation, this also translates to very different foci. Some hospices limit themselves to rather simple medications and limited physician services, for example, and therefore may be more able to provide home health aides. Other hospices are committed to providing whatever treatments the patient and physician think might be helpful. Since the treatments are often costly, these hospices might have much less flexibility to serve psychosocial needs. In addition, hospices are very different in size. Roughly 30 percent of hospice days are in hospices that are of substantial size—more than 150 patients on the usual day. However, these patients are being served by only about a score of hospice organizations. The other 3,100 hospices mostly serve less than 50 patients on any given day (Stephen Connor, National Hospice and Palliative Care Organization, personal communication, July 13, 2000). Large hospices are more able to take risks and accept patients who might be exceedingly costly. Managers of small hospices realize that one patient with extreme costs would spell financial disaster. These differences are not usually apparent to patients or referring physicians, who may end up seeing differences among hospice programs as simply erratic, unpredictable, and idiosyncratic. Hospices are bedeviled now with short stays. In 1998, the mean length of stay was 51.3 days and the median length of stay was 25 days (National Hospice and Palliative Care Organization, 2001). In 1990, the mean was nearly 90 days and the median was 36 days (Christakis and Escarce, 1996). Various observers attribute short stays to different causes, including physician and patient reticence to stop active treatment; more treatment options for second-, third-, and fourth-line treatments (e.g., Herceptin, Rituxan, erythropoietin); hospice reticence to enroll patients receiving expensive treatments (even if acknowledged to be palliative); prognosis becoming clear only when death is close (especially in non-cancer diagnoses); and new populations coming into hospice (incompetent persons, very elderly persons, noncancer fatal illnesses, and others). No reliable research has yet sorted out the reasons for increasingly short stays in hospice. However, the financial impact has been substantial. The first day or two in hospice are always costly, as the hospice team gets to know the patient and family, puts needed equipment and medication in the home, and monitors progress with new plans of care. Likewise, the last few days of life are expensive, as the patient and family need more care, more frequent changes in medication, help with declaring death and arranging for the care of the body, and

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Improving Palliative Care for Cancer support through at least a year of bereavement. When these days come close together, there are no “stable” days in which costs might often be lower than the daily rate. Thus, short stays threaten the financial viability of hospices. Hospices are also struggling with a plethora of developments in palliative care. Twenty years ago, it was not much of an exaggeration to claim that the hospice physician could do most everything with little more than cheap opioid medications, steroids, diuretics, and antibiotics. Now, patients are served somewhat better by more technologically advanced interventions, more expensive medications, more use of radiation or surgery, and so on. For example, for some patients, pain could be suppressed with oral or subcutaneous morphine, with the side effect that the patient would be groggy and perhaps sometimes confused. Better alertness and pain control might be possible with an intrathecal pump for morphine, at an initial cost of about $20,000. Other examples are common. Gemcitabine measurably reduces pain in pancreatic cancer and has been reported to have superior antitumor activity and improved survival over 5-fluorouracil (5-FU; Ulrich-Pur et al., 2000), at a cost of about $500 per week. Many patients with advanced cancer also get pulmonary emboli or thrombosis of the leg veins. Standard treatment with anticoagulants entails certain risks and annoyances that are largely avoided by low-molecular-weight heparin injections. However, the standard treatments cost only a few dollars per day (after initial hospitalization, which is covered by Medicare), while the low-molecular-weight heparin costs about $60–$120 per day it is not covered by Medicare unless a hospice program decides to pay for it from the hospice per diem. Because this is financially unsustainable, medications and interventions that are this costly and are not covered by insurance are largely unavailable. In contrast, if covered by insurance, they are readily available, even if a thoughtful assessment would raise doubts about the merits of investing so heavily in small gains for persons with short life expectancies. Gap Between Hospice and Home Care Many patients simply have no Medicare-covered services for a part of their course when they are quite needy but are neither so sure to die within six months that hospice is available (or they are otherwise ineligible for their local hospice) nor so housebound as to qualify for the limited help from Medicare home care (which requires being unable to leave the home except for physician visits). Physicians and nurses are probably fairly customer oriented for this needy group and offer ways to get them some of the services they need (e.g., by short-term certification of homebound status).

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Improving Palliative Care for Cancer This study was, however, largely uninterpretable because the key comparison was between cancer patients who had used hospice and those who had not. Even with a multivariable modeling technique, the comparability is uncertain. Furthermore, these data are now outdated, having focused on patients who died in 1992, and much has changed since that time. Since Medicare Part A and B expenditures cover less than 50 percent of medical care costs for patients over 65, examination of Medicare claims alone also limits our full understanding of the potential savings or costs of hospice enrollment. Recent unadjusted comparisons (Hogan et al., 2000) showed that the total costs of care (from the Current Medicare Beneficiary Survey) were not significantly different, although Medicare’s proportion of payment was higher for hospice users. Emanuel addressed the question of whether better care at the end of life would generally reduce costs (Emanuel, 1996). Using his assumptions and estimates, hospice and advance directives might save 25–40 percent of the last month’s costs and 10–17 percent over the last six months. A recent analysis for the Medicare Payment Advisory Commission (MedPAC) showed that patients who used hospice tended to be high-cost users before hospice enrollment (at the least, they did not include any very low cost users) and their costs were similar to non-hospice-using cancer patients at the end of life (Hogan et al., 2000). Pritchard and colleagues reported on regional variation in where patients died and found that the availability of Medicare hospice services affected the likelihood of dying at home (Pritchard et al., 1998). However, the overwhelming predictor was regional hospital bed supply. The amount of regional variation is substantial: between 14 percent and 49 percent of Medicare beneficiaries in different areas use intensive care units (ICUs) in the last six months of life, and the aggregate Medicare costs of that time are between $6,200 and $18,000 (Dartmouth, 1999). Work on regional variation illustrates the complex relationship of location, costs, service supply, and patient preferences. Higher bed supply is almost always a strong predictor of higher costs and more hospitalization, but it is not at all clear whether there is an optimum rate or whether increased availability of other services is necessary to support low rates of hospital supply. While patients with cancer wish to die at home among familiar surroundings, labeling this as cost-effective (or cost-saving) may be premature, given the complex nature of the disease, technological advances, family resources. Very little research has described the costs to caregivers of terminally ill cancer patients. One study of cancer patients who were undergoing active treatment reported that the average cancer home care costs for a three-month period were not much lower than the costs of nursing home care (Stommel et al., 1993).

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Improving Palliative Care for Cancer Problem of Varying Lengths of Life Virtually our entire slim database on costs implicitly turns on a problematic assumption that the time to death is not affected by the treatments given or the choices of patients and others. On the few occasions when a researcher aimed to learn whether an intervention could be justified in terms of lengthening life, a rough estimate of cost per year of life might be made. However, if good palliative care extends life by a few months or if nursing home placement shortens life, these effects have not been assessed. Thus, since patients’ length of life varies substantially anyway, it would be hard to notice whether interventions or patterns of care altered survival time by a few months. Yet, this effect could be substantial in financial terms. The last few weeks or months characteristically have the highest costs. If some patterns drag out this time and others foreshorten it, analyses that do not take this into account could yield seriously misleading assessments of costs. Once the patient is very sick, the most substantial contributor to lifetime costs is survival time. No method corrects costs per unit time for changes in the numbers of units of time. Indeed, policymakers would reasonably be concerned about whether to focus on lifetime costs or costs for each unit of time. REFORMS IN FINANCING ARRANGEMENTS TO IMPROVE END-OF-LIFE CARE End-of-life care is unavoidably expensive, largely because people are very sick, but also because prognoses are ordinarily ambiguous until very close to death. One could certainly aim reforms at using existing funds more cleverly, but one cannot hope to reduce the costs of care substantially for those who are living with serious disability from cancer or for treatments that might still give the patient a chance to live longer or better. Medicare and other insurers do not often cover the services most needed, and the services best covered may well be overused. While some surgeries or invasive procedures still offer benefits to patients coming to the end of life, the balance of burdens and benefits makes it much less likely that these treatments still offer net benefits. Instead, the kinds of things that ordinarily have few side effects and substantial benefits are prescription medications (such as opioid analgesics), family support, and respite care. These either are not covered at all or are covered only under unusual circumstances. Some services, such as psychosocial support, family and patient education, and advance care planning, are partly covered if provided by a qualified provider and supported by adequate documentation, but the time and effort needed to meet requirements may exceed the reimbursement.

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Improving Palliative Care for Cancer Once a person has advanced cancer, many of the problems that he or she will face can be anticipated, and plans can be put in place to provide thoughtfully designed responses. This anticipation of future possibilities and implementation of customized plans has come to be called “advance care planning,” and it functions to avoid emergency responses that no longer serve the patient well, such as resuscitation at the end of life. Advance care planning also functions to implement the patient’s and family’s perspective on the merits of various courses of care. Care patterns that routinely transfer patients from one provider of care to another do not generally focus upon advance care planning. Making plans requires envisioning the patient’s situation comprehensively, effectively communicating about the situation and its possible treatments with patient and family, and having the capability to implement plans where the patient lives (including home, assisted living, or nursing home). The usual physician in an office or hospital has few incentives to take the time and endure the problems of doing this, since it seems to be enough to implement the recommended treatment protocols or address the patient’s current problem. Indeed, the interfaces between provider types cause many “built-in” disruptions in care. Some physicians who work in hospitals do not even register to write prescriptions for controlled drugs for patients at home. When their patients leave the hospital, they have to get opioid medications from another physician, leading to a delay, which invites recurrence of pain. Often, the physician in the nursing home simply prefers different medications from the physician in the hospital, thus guaranteeing a period of risk from overdosing or underdosing with each transfer. Many provider organizations, as a matter of policy, do not trust the decisions made in other settings to forgo resuscitation, artificial feeding, or other important treatments. Thus, when the patient is transferred, these plans have to be reestablished. If communication is difficult or the situation is deteriorating rapidly, repeating the discussion of plans may not be done in time. Again, the patient’s plans end up not being implemented. In short, continuity matters to the seriously ill and dying, but the payment arrangements do not generally support this good aim. Physicians actually are paid better for having many initial examinations rather than for continuity. Hospices are barred from providing care to patients who are not yet eligible for hospice. Indeed, hospices and home care agencies cannot arrange integrated services with one another, even though such services might insulate patients from the problems of transfers. Once enrolled in hospice (or PACE, the Program of All-Inclusive Care for the Elderly), patients enjoy continuity and comprehensiveness, and these programs have nearly universal advance care planning and the lowest rates of transfer in health care. Transfers in these programs arise almost entirely from patient

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Improving Palliative Care for Cancer choice or from the forced discharge of hospice patients who stabilize and cannot be certified as continuing to have less than six months to live. Various options could be made available to rearrange payment and coverage to encourage continuity. With continuity comes a drive for comprehensiveness. Issues such as family support, bereavement counseling, and housing are unavoidable when care providers stay with the patient through whatever comes up. More continuity and comprehensiveness may well encourage innovations such as paying family caregivers (as much of Europe already does), providing respite care, developing supported housing, and ensuring that medications are available. Modifications to hospice seem to be an obvious target for improving end-of-life care for patients with cancer (President’s Cancer Panel, 1999). Hospice could be made available on the basis of the extent of illness or disability and then be lifelong, rather than requiring a confident prediction of death within six months. Hospice expertise could be made available to patients who are not eligible for direct services by allowing consultation by the hospice team. It makes sense for hospice team members to become known to patients with eventually fatal malignancies during the course of their illness, rather than just at the very end of life. In short, enrollment into hospice should be a less dramatic change and a more expected and integrated transition. Hospice programs could be paid somewhat more for the first day or two and the last day or two (and perhaps less for longer-term stays). Payments for costly treatments should be considered on their own merits. If evidence shows that the costs are worth it in the community’s judgment, then those interventions that cannot generally be provided within the hospice capitation should be paid separately for small programs or should be folded into the overall capitation rate for large programs. How could society move to make these reforms? We need an era of innovation and evaluation, aiming to learn how to engineer our care system to provide reliably competent, comprehensive services from the time of onset of serious illness through to death. In doing this, society will need more reliable data on the relevant populations. The available research has usually measured costs in a referral clinic serving a population that is more than a decade younger than the average of those who face the problem. Policymakers need data about the effects and costs of various treatment strategies and approaches to organizing care delivery, in samples that represent the entire population at risk. This information requires developing new methods and substantial commitments. Until now, society has focused mainly on premature deaths and disability. Having won many of these battles, most people now get the opportunity to live long and die of degenerative conditions such as cancer. As a

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Improving Palliative Care for Cancer society, we need to learn new framing, new approaches, and new ways of paying for the care that people need at the end of life. It can be done, and done within just a few years, if we set about the job now. POSSIBLE STRATEGIES TO IMPROVE FINANCING FOR CARE OF PATIENTS COMING TO THE END OF LIFE WITH CANCER Reshaping the financing of end-of-life care for those with cancer requires attention to three elements: serviceable methods, adequate description and monitoring, and innovation with evaluation. Many organizations bear responsibility for addressing these needs, some of which are noted (in parentheses) in the discussion that follows. Methods Development Priorities Metrics for costs and effects (Agency for Healthcare Research and Quality [AHRQ], Health Care Financing Administration [HCFA], National Center for Health Statistics [NCHS], MedPAC, Department of Veterans Affairs [VA]) Benchmarks—what quality can real systems yield? (AHRQ, Health Resources and Services Administration [HRSA], HCFA, VA) Developing models to correct for nongeneralizable populations (AHRQ, HCFA) Efficient methods to monitor population experience with end-of-life care in cancer, measuring outcomes and processes (Centers for Disease Control and Prevention [CDC], AHRQ). Efficient reporting and analysis of costs, in aggregate and to various payers (HCFA, MedPAC, AHRQ) Exploration of the relationship between costs and life span, and development of language and methods to correct for varying life span in assessment of cost (National Institutes of Health [NIH], AHRQ, VA) Descriptive Data Priorities Developing surveillance methods to monitor trends and comparisons among populations by age, race, diagnosis, and geographic locality (CDC, states) Describing service use (including hospice) by outcomes, variations, and comparisons across geographical areas (HCFA, AHRQ) Assessing the costs and benefits of interventions in generalizable populations (NIH, AHRQ)

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Improving Palliative Care for Cancer Innovation and Evaluation We urgently need a period of innovation, with thoughtful evaluation and learning, in order to shape the care system and payment arrangements so they will better serve cancer patients coming to the end of life. Here, a list of possibilities is provided. Many agencies and programs should take part, but it seems likely that NCI, AHRQ, HRSA, HCFA, and the VA should be in the lead. In each case, an innovation is listed, but it is essential that each innovation be evaluated and that insights be gained from the trial. These examples are meant to be illustrative, not comprehensive or sufficient. The important conclusion is that innovations such as these should be tried out, in substantial numbers, and soon. PRESCRIPTION DRUG COVERAGE If Medicare covers medications, examine effects on end-of-life care. If there is a formulary or purchasing cooperative, evaluate comprehensiveness and efficiency of symptom treatments. If Medicare does not cover medications generally, experiment with coverage for symptoms only. HOSPICE Change enrollment criterion from prognosis to severity (or extent) of illness and allow continuous enrollment from onset of a certain severity to the end of life. Pay more for the first day or two and the last day or two. Carve out certain high-cost treatments or “pay down” their cost to the program to a reasonable cost share. Allow the hospice team to consult on nonhospice patients. Increase the daily rate, tailored to specific diagnoses. Encourage “bridge” and “graduate” programs, with funding beyond home care. Require coverage of hospice in Medicaid. Reward physicians (e.g., with better administrative arrangements) for signing up patients on hospice. NURSING FACILITY OR LONG-TERM CARE Integrate hospice care and nursing home care at a fair rate of pay. Develop regional guidelines on management of common symptoms and advance care planning to ease transfers. Make key consultations for difficult symptoms readily available on-site. Provide incentives so that most residents can live to the end of life in their residence.

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Improving Palliative Care for Cancer Evaluate high rates of hospital transfer as evidence of potentially avoidable adverse events. HOME CARE Modify home care eligibility to ease the homebound requirement. Ensure quick availability of key consultations for difficult symptoms arising in a home care patient. Establish rate and enrollment criteria encouraging “bridge programs” that are integrated with hospice. Try out integrated home-hospice-institutional care programs (PACE, MediCaring). Encourage geographic concentration by programs. CAPITATED PLANS In PACE, the payment rate for Medicare is set at the nursing home rate and Medicaid makes up the rest. The Medicare rate is almost certainly too low for cancer patients, forcing Medicaid to make up more of the overall rate and thereby making PACE care of cancer patients unattractive for the states. PACE’s Medicare payments could mirror the risk adjustment rates, once those are set. Make risk adjustment plans cover end-of-life care (e.g., for patients not likely to live into next year; for patients cared for mainly out of hospital). Purchase on quality of end-of-life care. Adjust the risk adjustment plan to improve end-of-life care. FEE FOR SERVICE Reduce the differential between procedure and counseling payments. Designate palliative care specialization, to avoid problems with concurrent care. Provide incentives for advance planning before repeat hospitalization. Provide incentives for coordinated care before repeat hospitalizations. Provide incentives for services in centers of proven quality in end-of-life care. FOR FAMILY CAREGIVERS Pay family caregivers a discounted rate for their services (e.g., half the going rate for paid services). Provide health insurance for full-time family caregivers who have no other source of insurance. Provide payment for respite help, either in-home or in-facility.

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Improving Palliative Care for Cancer Provide more paid help at home, including in PACE and hospice. FOR HIGH-COST PALLIATIVE CARE Require accounting of the aggregate costs and benefits of costly interventions in realistically representative populations. Develop a regional or national review process that can limit coverage for particular interventions to particular kinds of patients or can keep a particular treatment from being covered at all. Monitor effects of high-cost interventions, especially effects on availability of aide care and psychosocial services. FOR CAPACITY BUILDING AND QUALITY IMPROVEMENT Involve HRSA in addressing the concerns of the population needing end-of-life care, including cancer. This would bring to bear the skills and attention of professional educators, manpower experts, health services delivery managers, and innovators and evaluators. Tie Medicare payments to quality (e.g., the upcoming effort to tie managed care payments to heart failure performance standards). Build culture of quality improvement; pay for the work. Consider the role of routine autopsy. CONCLUSION The quality, reliability, and comprehensiveness of end-of-life care are important to cancer patients and their families. Some of the current shortcomings arise from financing and regulations; others, from habit patterns. Enduring reforms must be guided by descriptive and evaluative data, which are not available. This shortcoming should be corrected quickly. We need a decade of vigorous innovation and evaluation, learning how to improve policies. As we settle upon desirable changes, we will also need to forge the political will for reform. REFERENCES Agra Y, Sacristan A, Gonzalez M, Ferrari M, Portugues A, Calvo MJ. Efficacy of senna versus lactulose in terminal cancer patients treated with opioids. Journal of Pain Symptom Management 1998; 15:1–7. American Cancer Society. 2000. http://www.cancer.org/statistics/index.html Beemstrober PM, de Koning HJ, Birnie E, et al. Advanced prostate cancer: course, care and cost complications. Prostate 1999; 40:97–104. Bennett CL, Matchar D, McCrory D, McLeod DG, Crawford ED, Hillner BE. Cost-effective models for flutamide for prostate carcinoma patients: are they helpful to policy makers? Cancer 1996; 77:1854–1861. Brooks CH. A comparative analysis of Medicare home care cost savings for the terminally ill. Home Health Care Services Quarterly 1989a; 10:79–96.

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