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Improving Palliative Care for Cancer 3 Quality of Care and Quality Indicators for End-of-Life Cancer Care: Hope for the Best, Yet Prepare for the Worst Joan M.Teno, M.D., M.S. Brown University School of Medicine and Department of Community Health INTRODUCTION Cancer is a life-defining illness. Half of those who get cancer die from it. Decades of research have resulted in cures for some forms of cancer, and for others, it is now a chronic, progressive, but still fatal illness. For those who die, quickly or after a long period of illness, health care providers must guide a patient through a disease trajectory where one must hope for the best, but prepare for the possibility of the worst. The management of this transition from hope for a cure to focus solely on comfort is key to quality end-of-life care. Important to this transition is medical care that is consistent with professional knowledge and that is based on informed patient preferences, to the extent the patient desires involvement in decisionmaking. The National Cancer Policy Board (NCPB) in its report Ensuring Quality Cancer Care (IOM, 1999) outlined a vision for the development of quality indicators to cover the spectrum of cancer care, including the dying process. We are not close to meeting this NCPB mandate for care at the end of life, either for cancer or for other conditions. Research and demonstration programs will be needed before a preliminary set of satisfactory indicators can be developed. Ideally, such efforts should entail the collaboration of the National Cancer Institute (NCI), the Agency for Healthcare Research and Quality (AHRQ), the National Institute for Nursing Research (NINR), and the National Institute on Aging (NIA). The focus of early work will be on the development and validation of measurement tools based on administrative data, medical records, and interviews with patients, family members,
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Improving Palliative Care for Cancer and health care providers. These instruments must be developed and adapted for different cultures and ethnicities. Measurement tools should be consistent with professional guidelines and the best available research. For many cancers, there is a strong evidence base to inform treatment decisions. However, research on the risks and benefits of cancer treatment, especially in those cases where chemotherapy, radiation treatment, and other treatment modalities are labeled palliative, is sorely lacking. Ongoing national data collection efforts include little information to describe the quality of care of dying persons and their families. An occasional survey, the U.S. National Mortality Followback Survey (NMFBS), has collected information on access to care and functional status but not on important domains that are central to the quality of care of the dying. A redesigned NMFBS could collect information on key domains to describe the quality of care for cancer patients who died based on the perspective of the bereaved family member. Currently, there are no plans for further iterations of the NMFBS, however. Quality indicators are needed for two main purposes: accountability (external use by regulators, health care purchasers, or consumers) and quality improvement (internal use for the purpose of monitoring or continuous quality improvement). The same types of indicators may serve both purposes, but the indicators may also be different. At this early stage in development, there is a strong evidence base to support the development of quality indicators for pain management for the purpose of accountability. However, demonstration programs will be needed before pain management indicators can be implemented nationally, and more basic research is needed to develop indicators for managing other common symptoms (e.g., emotional distress and depression, fatigue, gastrointestinal symptoms). An important aspect of demonstration and validation is monitoring for potential unintended consequences (e.g., patients are sedated contrary to their preferences to improve accountability statistics). Besides the domain of symptom management, four other domains should be considered for early development and implementation of accountability measures: (1) patient satisfaction, (2) shared decisionmaking, (3) coordination, and (4) continuity of care. In each of these domains, indicators must validly represent the perceptions of the dying person and family members. This means investing in new survey methods that are patient centered and include questions that get at unmet needs, which has not always been the norm. Shared decisionmaking has been increasingly recognized as a key aspect throughout the continuum of care. While the focus of research has been on resuscitation decisions, the most important decision for the majority of
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Improving Palliative Care for Cancer cancer patients is the one to stop active treatment, but there is little research examining this decision. There is strong support for the domains of pain (and other symptoms), shared decisionmaking, satisfaction, coordination, and continuity of care, but there is debate about which other domains are important in the care of the dying. Various conceptual models have been proposed to examine the quality of end-of-life care, emphasizing different domains. Research is now needed to examine the correlations among structures of the health care system, processes of care, and important outcomes to identify the most fruitful areas for developing new quality measures. Two national data collection systems warrant consideration for the development of quality indicators: Medicare claims files and the Minimum Data Set (MDS). NCPB has recommended that hospice enrollment and length of stay be examined as quality indicators (IOM, 1999) From a national perspective, the only data set with that information is Medicare claims data. Other indicators based on administrative data have also been proposed (Wennberg, 1998). Work to develop and validate these indicators using claims data is still to be done. The second national data collection effort is the MDS, which routinely collects extensive information on every nursing home resident in the United States. Nursing homes increasingly are providing end-of-life care for frail and older Americans (Teno, 2000a). In 1998, an estimated 10 percent of cancer patients died in a nursing home. The Health Care Financing Agency (HCFA) is now embarking on a national program of examining nursing home quality performance. There are important lessons to be learned from the MDS, including concerns about the institutional response burden in implementing data collection and the potential for unintended consequences. In the nursing home setting, the main concern is with applying quality indicators developed for populations where the goals of care are on restoring function to those who are dying. For example, the rates of dehydration and weight loss are now among the core quality indicators for nursing homes (HCFA, 2000). With increased scrutiny of these indicators, there is concern that unintended consequences for the dying include increased use of feeding tubes, which could be contrary to patient preferences. At this time, health care providers usually apply the term “dying” to individuals in the last days of life, allowing little time for preparation or life closure. Given the inherent imprecision of predicting the day of death, we need to move back on the continuum and identify people with “life-limiting illness” or “serious, progressive illness,” which would imply a median survival of less than one year. “Hope for the best, prepare for the worst” is not something we say to people dying of cancer. In one sense, it forces us to admit failure to a disease
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Improving Palliative Care for Cancer that is the second leading cause of death in the United States. While it is the disease that we are “fighting,” our ultimate obligation is to provide the best-quality care to each individual patient, and we must recognize that individual preferences are central to defining the quality of medical care. Health care providers must not only provide the best available clinical care, as desired by patients, but must become adept at helping patients and families make choices about transitions in goals of care. The goal of quality indicators is to measure the extent to which the health care system is succeeding in this at the end of life. QUALITY OF END-OF-LIFE CANCER CARE Few, if any, would argue seriously against the current emphasis on prevention and cure in cancer research and treatment. Yet this emphasis should not be allowed to result in inadequate care of the half-million people who die from cancer each year in the United States, whose final needs are for treating symptoms as they approach death. The National Cancer Policy Board, in Ensuring Quality Cancer Care (IOM, 1999), noted the wide disparity between the “ideal” cancer care system and the reality that confronts people with cancer today. The gaps are nowhere as large as they are in the realm of care for the dying. A central premise of this chapter is that patient expectations and preferences are fundamental to defining the quality of medical care for people with chronic, progressive, and eventually fatal illnesses. Fundamental to any discussion of quality of care, however, are measures of quality that are valid and reliable. This chapter focuses on the status of “quality indicators” for assessing the care of dying individuals, particularly those dying from cancer. Dying is unlike any other time in a person’s life. A 41-year-old with his first heart attack will most likely value the same health outcomes as others with the same diagnosis: a focus on minimizing the extent of damage to the heart, preserving cardiac function, and reducing the risk of another heart attack. Those dying from chronic, progressive, and eventually fatal illnesses, however, may choose very different courses. The goals of care for a dying person cannot reasonably be anticipated, as they can in the case of a heart attack patient. To care well for a dying person, health care providers must understand that person, his or her needs and expectations, and the disease trajectory itself. Care of the dying is distinct from other aspects of health care in that it is delivered not just to the patient, but in the context of a “family” (in its most inclusive definition, not restricted to the legal definition of “family”) (WHO, 1990). Ideally, care is “patient focused,” which is defined as care
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Improving Palliative Care for Cancer that promotes informed patient involvement in decisionmaking and attends to physical comfort and emotional support. In the past century, the United States has seen a striking transformation in how people die. In contrast to the late 1800s, people now die of chronic, progressive, and eventually fatal illness such as cancer, which they may live with for years or decades. Faced with caring for an older and chronically ill population, public policy and research efforts have focused on examining not only survival but also quality of life and health care costs. In a New England Journal of Medicine editorial, accountability was identified as the “third revolution in medical care,” following on the heels of health care expansion and cost containment (Relman, 1988). Yet, to date, little attention has been given to how best we can measure the quality of end-of-life care. Despite the universality of death, few generalizable research studies (Addington Hall and McCarthy, 1995; Emanuel et al., 2000; Greer et al., 1986; Lynn et al., 1997; Seale et al., 1997; Wolfe et al., 2000) have examined the experiences of dying persons. At this early stage, cancer represents an ideal disease trajectory on which to initiate work measuring quality of care of the dying for the purposes of accountability (i.e., external release of data to the purchaser, regulator, or consumer in order to compare and contrast quality between health care institutions), quality improvement, and research. Cancer, in contrast to other leading causes of death (e.g., congestive heart failure, chronic obstructive lung disease, stroke), has a more predictable functional trajectory prior to death with less uncertainty in prognosis (Fox et al., 1999; Teno et al., 2001). Some cancers have an authoritative scientific evidence base to guide treatment decisions. Health care providers now have access to evidence-based treatment algorithms, including some for palliative treatment (ASCO, 1997). For these reasons, cancer is a good place to start designing and implementing a national system to measure the quality of end-of-life care. What Is an Ideal System for Monitoring Quality of Care for Cancer? The NCPB has outlined the characteristics of an ideal system for measuring quality of care for cancer patients. In order to meet these goals, we will need appropriate measurement tools for research to develop the scientific evidence base, for quality improvement, and for public accountability (Table 3-1), all of which may be different. The areas of emphasis and desired characteristics vary for measurement tools intended for different purposes (Table 3-2). For example, the intended audience for quality improvement (QI) measures is the institutional and QI staff, whereas the intended audience for public accountability is the health care purchaser and consumer. Given the intended audiences and implica-
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Improving Palliative Care for Cancer TABLE 3-1 Purposes of Quality Measures Purpose Description Quality improvement Measures to provide information for health care institutions to reform or shape how care is provided Clinical assessment Measures to guide individual patient management Research Measures that assess the phenomenon of interest Accountability Measures that allow comparison of quality of care for the purposes of quality assurance or for consumer choice between health care institutions or practitioners SOURCE: Teno et al., 1999. TABLE 3-2 Areas of Emphasis Based on the Purpose of Quality Measure Purpose of Measure Clinical Assessment Research Improvement Accountability Audience Clinical staff Science community QI team and clinical staff Payers, public Focus of measurement Status of patient Knowledge Understand care process Comparison Confidentiality Very high Very high Very high Low Evidence base to justify use of measure Important; measure should have face validity from a clinical standpoint Builds on existing evidence to generate new knowledge Important Extremely important in that proposed domain ought to be under control of the institution Importance of psychometric properties Important to individual provider Extremely important to the research effort Important within specific setting Valid and responsive across multiple settings SOURCE: Adapted from Solberg et al. (1997) and Teno et al. (1999). tions of the use of measurement tools, more stringent psychometric properties than are now employed must be put into measures that will be used for public accountability. In addition, there must be either normative or empirical research substantiating a claim that the construct being measured for public accountability is under the control of the health care institution.
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Improving Palliative Care for Cancer It seems easy to conceptualize quality measures for various purposes, but in practice, we are at an early stage in measuring the quality of end-of-life care. Substantial normative and empirical research is still needed to develop and validate a conceptual model of quality end-of-life care, to develop and test the psychometric properties of proposed measurement tools, and to demonstrate the tools’ effectiveness in multisite studies before they can be used nationally. This chapter describes what is known and what still needs to be done to develop widely applicable quality indicators for end-of-life care for cancer patients. The following questions guide the discussion: What is currently known about the quality of care for dying cancer patients? What are the proposed definitions and conceptual models for quality of care of dying persons and their family? What can we currently measure with existing nationally collected data? What do we want to be able to say in the future? What research is needed? What Is Currently Known About Quality of Care of the Dying Cancer Patient? Few studies have characterized the experience for dying cancer patients and their families. From a national perspective, only one ongoing data collection effort routinely characterizes dying from cancer, and a second occasional survey was carried out six times between the early 1960s and 1993. The National Center for Health Statistics (NCHS) compiles data from all death certificates nationwide and publishes annual summaries that include cause of death, place of death, and other demographic information. The other survey that has characterized aspects of dying is the NMFBS, last carried out in 1993. The 1993 survey represents a 1 percent sample of all deaths at age 15 and older. Unlike the mortality followback surveys in the United Kingdom (Addington Hall and McCarthy, 1995a, 1995b), the NMFBS does not characterize the quality of the dying experience (e.g., pain management, satisfaction). Rather, the U.S. survey collects information on socio-demographics, use of alcohol and medications, lifestyle, health care resource utilization, and difficulties with functioning (Lentzner et al., 1992; NCHS, 1998). What can be learned from the available data? In 1998, 538,947 people died of cancer in the United States. Five types of cancer account for 70 percent of those deaths (Figure 3-1; NCHS Web site). Over the past decade, there has been a trend toward more cancer patients dying at home (Figure 3-2;
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Improving Palliative Care for Cancer FIGURE 3-1 Leading causes of cancer death, 1998. FIGURE 3-2 Site of cancer deaths, 1986–1997 (selected years).
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Improving Palliative Care for Cancer mortality files and NMFBS). There is, however, substantial geographic variation in the site of death (Figure 3-3) (Pritchard et al., 1998; Wennberg, 1998). For example, Oregon has experienced a dramatic increase in the proportion of people dying at home (probably due to a number of factors, including closing of hospital beds and a vigorous public debate about physician aid in dying) (Tolle et al., 1999). Based on the 1993 NMFBS, cancer patients are less likely to be functionally impaired in the last year of life and experience a more precipitous functional decline in the last five months of life than those dying from other causes (Figure 3-4), as measured by difficulty with activities of daily living (ADL: bathing, dressing, eating, transferring from a bed or chair, and using the toilet). In that year, nearly half of these deaths occurred in an acute care hospital, and 36 percent, at home. Only 19.7 percent of those who died from cancer in 1993 used hospice care. The functional trajectory measured as the number of ADL impairments in the last five months of life was associated with dying at home and with hospice involvement (Teno et al., 2001). FIGURE 3-3 Proportion of cancer home deaths in 1997. Copyright, Center for Gerontology and Health Care Research, used by permission.
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Improving Palliative Care for Cancer FIGURE 3-4 Age-adjusted ADL scores by time before death. NOTE: ADL=activities of daily living; CHF=congestive heart failure, COPD= chronic obstructive pulmonary disease; CVA=cardiovascular accident (stroke). In Ensuring Quality Cancer Care (IOM, 1999), the NCPB recommended ensuring timely referral of dying cancer patients to palliative and hospice care. Currently, the only data that can shed light on the timing of these referrals are from Medicare claims files, and these do not tell the story of whether referrals are “timely.” However, they do demonstrate a dramatic reduction in the median length of hospice stay during the late 1990s and substantial geographic variation in length of stay. In 1990, reported median length of stay was 36 days (Christakis and Escarce, 1996). According to the National Hospice Organization (NHO), this had declined to 25 days by 1998. There has been some speculation that the decline is due, in part, to efforts to avoid charges of Medicare fraud, which may cause practitioners and hospice providers to delay enrolling patients until they are very close to death. Information on access to medical care was collected in the 1986 and 1993 NMFBS. In 1993, the question asked was, Were there any times during the last year of life that…needed health care, but didn’t get it? Eleven percent of respondents stated that they had difficulty obtaining needed care, which seems relatively small. However, this question should be repeated in future surveys, because access to care is continually changing.
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Improving Palliative Care for Cancer While the NMFBS has provided some information about the dying experience, health care providers cannot answer the important question, What will my dying be like? Information about the bereaved family member’s perspective on the quality of care, concerns about pain management, or whether medical care was in accord with the patient’s informed preferences is not included. To address these issues, we must rely on less generalizable studies. Future Directions: Funding a seventh wave of the National Mortality Followback Survey should be considered. If carried out, it should include data collection to document a surrogate perspective on quality of care with a focus on issues that proxies are known to report accurately—access to care, decisionmaking, advance care planning, coordination of care, and the financial impact on dying persons and families. Additional research should be conducted to improve the quality of followback reporting (e.g., to examine the best timing of interviews within the constraints of current reporting of death data). Research is also needed to examine the types of people best able to serve as proxies, what they are able to validly report on, the impact of bereavement, and the validity of interviews with family members. Pain Pain is common among people dying from cancer. Severe pain may signify that death is not far off (Conill et al., 1997; Foley, 1979; Portenoy et al., 1994a; Turner et al., 1996). Cancer pain, itself, can lead to anxiety, depression, and even suicide (Spiegel et al., 1994; Strang, 1992). One study found that requests for physician aid in dying were withdrawn once the patient was appropriately treated for pain (Foley, 1991). The general public is fearful that the discomfort associated with cancer will be “extremely painful” (Levin et al., 1985). Nearly 70 percent of people believe cancer pain can be so severe that a patient considers suicide. Are such concerns warranted? Multicenter studies in hospitals (Desbiens et al., 1996; SUPPORT Principal Investigators, 1996), outpatient settings (Cleeland et al., 1994), and nursing homes attest to important public health concern with pain assessment and management (Bernabei et al., 1998). In the Study to Understand Prognosis and Preferences for Outcomes and Risks of Treatments (SUPPORT), 22.7 percent of patients reported moderately or extremely severe pain at least half the time during their first week of hospitalization. Bereaved family members reported that more than 40 percent of those who
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Improving Palliative Care for Cancer Some of these domains can be examined in part with two national databases: the Minimum Data Set of Nursing Home Residents and Medicare claims files. The MDS is federally mandated and reports data from the Resident Assessment Instrument, which collects information on the presence, severity, and frequency of pain for nursing home residents at admissions, quarterly, and with changes in health status (Hawes et al., 1995; Morris et al., 1990). With computerized drug data, quality indicators can be formulated to examine the frequency and severity of pain and the degree to which pain is treated. Based on an examination of the MDS database available from five states, nearly one in four cancer patients with daily pain was not prescribed any analgesic (Bernabei et al., 1998). Although only about 10 percent of cancer patients die in a nursing home, they are often the most frail and vulnerable patients. The MDS is a potentially useful tool for public accountability, but it has limitations. For one thing, the data are recorded by staff members, not by the patient, so reports of pain and other symptoms depend on the accuracy of proxy staff reporting. An indication that reporting may not be accurate, or at least not uniform, is the range of values found in nursing homes from 10 different states, which Teno and colleagues found to vary between 8 and 49 percent of patients reported as having daily pain (Teno, 2000b). This variation could reflect inadequate pain assessment, inconsistent pain management, or the different types of people cared for by a facility. A likely explanation is inadequate assessment, given the challenges of evaluating pain in this frail population, more than half of whom have moderate to extensive cognitive impairment. Since July 1999, HCFA has identified a series of performance indicators that are examined based on the MDS. Experience with the use of the MDS indicators has yet to be evaluated, but there are important concerns. Specifically, the experience of nursing homes is increasingly revealing the importance of unintended consequences of applying quality indicators to populations in which they are not applicable. For example, two of the proposed nursing home indicators focus on dehydration and weight loss. A quality indicator is composed of a numerator (e.g., those persons with pain) and a denominator (e.g., conscious persons in that nursing facility). For the dehydration and weight loss indicators, the denominator is everyone in the health care facility, including those who are dying. The potential unintended consequence is that nursing homes will increase the use of nasogastric tube feeding, IV hydration, and hospitalizations of dying individuals. The obvious and simplistic solution is to eliminate the dying patients from the denominator. However, identifying patients who are dying—particularly those dying from illnesses other than cancer—can be quite difficult given the limitations of prognostication and
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Improving Palliative Care for Cancer knowing that the functional trajectory is relatively flat for noncancer patients (Teno and Coppola, 1999). For Medicare beneficiaries enrolled in fee-for-service plans (but not in Health Maintenance Organizations), Medicare claims files collect information on charges, reimbursement, hospitalizations, hospice enrollment, Current Procedural Terminology (CPT) codes, and International Classification of Diseases, Ninth Edition (ICD-9) codes. Researchers have used these records for a variety of purposes. Pritchard and colleagues (1998) examined the national pattern of proportion of deaths in hospitals. Wennberg and colleagues have examined records for the last six months of life to determine whether patients spent time in an intensive care unit (ICU), the number of physician visits, and whether 10 or more physicians were involved in the decedent’s care, all of which are potentially useful indicators of aspects of quality. The importance of this work is the striking variation around the country in each of these statistics (which was also found in two studies based on SUPPORT data, after adjustment for disease severity and patient preferences) (Pritchard et al., 1998; Teno et al., 2001e). However, Medicare claims data alone cannot be used as appropriate quality indicators because they lack information on disease severity and patient preferences. One way around this is to link a measure of severity (site and stage of cancer) from NCI’s Surveillance, Epidemiology and End Results (SEER) database to Medicare claims. Data linkages such as this are becoming easier but still require considerable development before they can be used routinely. Future Directions: HCFA, AHRQ, or NCI could sponsor research to develop and validate the use of quality indicators based on data from Medicare claims files. None of the existing databases captures the patient perspective on the quality of care. The only federally sponsored effort that has attempted this is the Consumer Assessment of Health Plans Survey (CAHPS; http://www.ahrq.gov/qual/cahpfact.htm). This five-year research effort has developed, validated, and used new surveys tools to capture the patient experience with managed care. The goal of CAHPS is to develop information to be used by consumers and health care purchasers in choosing managed care plans. CAHPS consists of core questions and modules addressed to specific populations (e.g., Medicaid managed care enrollees) and covering specific content areas (e.g., well-child care, prescription medicines). There is a CAHPS chronic disease module, but it is not specific enough to assess the quality of care for advanced cancer, and it would be difficult to construct a module that could do so within CAHPS. The discussion thus far has focused on indicators to be used for public
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Improving Palliative Care for Cancer accountability. Equally important are indicators for “quality improvement,” which takes in a range of purposes from institutional audits to identify opportunities to improve care, to indicators designed to examine the impact of small interventions tested through multiple “Plan, Do, Study, and Act” cycles. The measures used for different purposes differ, but are related, and fall along a continuum. Measures developed for quality improvement with the correct psychometric properties may evolve into accountability measures. There are currently no quality indicators in national use that deal specifically with palliative care or other end-of-life issues. However, the degree to which indicators may be in use for QI or other institutional purposes is not known. The author contacted six NCI-designated Comprehensive Cancer Centers with strong palliative care interests to determine the extent of their current systematic efforts to examine quality of care of the dying. Only one of the centers is collecting any such information, using the NHO family satisfaction survey for people who died in an affiliated hospice program and ongoing satisfaction surveys to examine the quality of care for dying patients discharged home from its hospital. Two other centers did monitor symptoms as a “fifth vital sign.” Future Directions: Comprehensive Cancer Centers should set the benchmarks for excellence in cancer care, and this includes validating and reporting on quality indicators. What Research Is Needed? In Ensuring Quality Cancer Care (IOM, 1999), the National Cancer Policy Board recommended development of a core set of quality measures for the continuum of cancer care, including care at the end of life. The elements of quality care identified were an “agreed upon care plan that outlines the goals of care, policies to ensure full disclosure of information with appropriate treatment options, a mechanism to coordinate services, psychosocial support services, and compassionate care.” There are gaps all along the continuum of care, but nowhere more severe than for end-of-life care, for which the following are needed: the development of new measurement tools; research to both validate measurement tools and examine their real-world application in terms of responsiveness and burden; and if these measurement tools are to be used for accountability, a consensus-building process between the public, the government, and the health care industry. The importance of guidelines has also been recognized by the NCPB and is especially true for examining quality of end-of-life care. A key question for advance care planning to formulate end-of-life contingency plans
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Improving Palliative Care for Cancer consistent with patient preferences is, When? Guidelines that recognize different needs at different points along the disease trajectory are necessary, especially those that are of particular importance when a person accepts that he or she is dying, such as spirituality and transcendence. Patient preferences and satisfaction are important at every stage of treatment, but they take on added significance at the end of life. The measurement tools now available are based on review of medical records or administrative data. New measures are needed that incorporate the extent to which a patient’s care is based on informed preferences, that measure whether patients receive psychological support if needed and wanted, and that they assess whether care is both coordinated and compassionate. The perceptions of the dying patient and family provide an important perspective on each of these aspects of medical care. These surveys should be developed according to a conceptual model that is based on guidelines and the concerns voiced by dying persons and their families. Some work has been started toward surveys of bereaved family members. One effort (Teno et al., 2001a; Teno, et al., 2001b) uses current guidelines and results of focus groups from around the country to develop questions on unmet needs and on the family’s perspective of the quality of care delivered to the dying person and to themselves. A second survey (Patrick and Curtis, 2001) focuses on the quality of dying. As these and other tools are developed, some questions will be applicable to all dying persons, but there will also be a need for disease-specific questions (e.g., management of toxicity from chemotherapeutic agents is a very important concern, and the specifics of management are different for cancer patients than for those dying from other causes). The initial work has focused on retrospective surveys of surviving family members largely because the denominator is easily defined (based on cancer registry or death certificate data) and family members are often the only ones able to be interviewed in the last month of a patient’s life. Surveys that directly capture the patients’ perspective are needed, as well, however. The design of such surveys could be linked to sentinel events or triggers (e.g., admission to palliative care or hospice program, reaching a certain disease stage), with consideration give to which domains are included and the point (or points) along the patient’s disease trajectory at which questions should be asked. An important tension that the developers of surveys will face is between respondent’s burden and the desire to be comprehensive. The eventual goal is to minimize the respondent burden, but initially a larger number of items will be tested and a winnowing process used to arrived at a parsimonious set of questions. The mode of survey administration is another important research question: can valid information be gathered through a self-administered ques-
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Improving Palliative Care for Cancer tionnaire (by either the patient or a proxy respondent), or should it be professionally administered? Self-administered surveys cost less, but their validity must be demonstrated for these sensitive areas. At a later stage, it will be necessary to examine the correlation of different quality indicators based on administrative data, chart reviews, and surveys. The constraints imposed by feasibility and cost must guide the development of quality indicators. A key consideration is to minimize the institutional burdens and maximize the value in achieving the goals of quality care for dying persons and their families. It will be important from the outset to involve health care administrators who would have to implement data collection in partnership with the development of measurement tools. Future Directions: Guidelines are needed that outline the triggers for when a cancer is to be considered life limiting (an implied prognosis of less than one year) and normative behaviors (such as advance care planning, discussion of prognosis and options of hospice) are expected. Such triggers should be linked to prospective surveys to measure the quality of medical care. Research to develop population-based prognostic models will be needed to help inform the selection of such triggers. CONCLUSION The development of quality indicators for the care of the dying person is at an early stage of development. Basic descriptions of the dying experience and the care given to people who are dying are still lacking. Clinical guidelines, important for synthesizing the available evidence and reaching consensus on what defines quality medical care, have been developed only for certain aspects of palliative and end-of-life care. These need further development within a system that allows regular incorporation of new knowledge. Such guidelines can help in defining who should be counted among the “dying.” Quality indicators based on guidelines and the consumer perspective must be developed, validated, and applied in health care settings. Such indicators must examine the structure, processes, and outcomes of health care systems. Research is needed to examine the interrelationships of structure, process, and outcome as well as the correlation of indicators using different data sources. Ultimately, we need indicators that are feasible and cost-effective, that recognize what the best medical care consists of, and that reflect the perspectives of the dying and their families.
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