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1 Introduction
Pages 21-44

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From page 21...
... As this report shows, the advances in medicine and health care that today help people survive advanced illnesses and serious injuries have been accompanied by several collateral effects: • growing frustration among health care professionals at the mis match between their training and the complex needs of the people they serve; • a high -- and escalating -- financial price, which includes costs for interventions that many people near the end of life do not want and that may be unlikely to benefit them; and 21
From page 22...
... . The key question for health care policy makers and analysts, however, should center not on costs, but on whether people nearing the end of life are receiving high-quality, effective health and supporting services and whether the mix of services available to them reflects their needs and preferences.
From page 23...
... Meanwhile, a large number of Americans have chronic conditions or functional limitations -- or both -- which are associated with higher needs and, as a result, health care costs (see Figure 1-1)
From page 24...
... physicians found that 96 percent believed "it is more important to enhance the quality of life for seriously ill patients, even if it means a shorter life," while only 4 percent believed it is more important to extend life "through every medical intervention possible" (Regence Foundation and National Journal, 2011, p.
From page 25...
... STUDY CHARGE AND APPROACH To conduct this study, the IOM assembled a 21-member committee comprising experts in clinical care, aging and geriatrics, hospice and palliative care, pediatrics, consumer advocacy, spirituality, ethics, communications, clinical decision making, health care financing, law, and public policy (see Appendix G for biographical sketches of the committee members)
From page 26...
... , and individual and family support. The committee will assess the delivery of medical care, social, and other supports to both the person approaching death and the family; person-family provider communication of values, preferences, and beliefs; advance care plan ning; health care costs, financing, and reimbursement; and education of health professionals, patients, families, employers, and the public at large.
From page 27...
... Palliative care may begin early in the course of treatment for a serious illness and may be delivered in a number of ways across the con tinuum of health care settings, including in the home, nursing homes, long-term acute care facilities, acute care hospitals, and outpatient clinics. Palliative care encompasses hospice and specialty palliative care, as well as basic palliative care.
From page 28...
... •  his report's use of the term "vulnerable populations" goes beyond the conven T tional usage, which applies to people from ethnic, cultural, and racial minori ties; people with low educational attainment or low health literacy; and those in prisons or having limited access to care for geographic or financial reasons. Here it includes people with serious illnesses, multiple chronic diseases, and disabilities (physical, mental, or cognitive)
From page 29...
... was to examine "medical care for persons of all ages with a serious illness or medical condition who may be approaching death." While this may appear to be a clearly defined assignment, establishing parameters for the study was actually rather complicated. On the one hand, it was obviously infeasible for the committee to examine the entire spectrum of care for chronic illnesses from their earliest stages and manifestations or the full dimensions of frailty.
From page 30...
... The real challenge is to design models of quality and affordable care that fit the variable trajectories and needs of seriously ill people who are nearing the end of life and their family caregivers. The same definitional quandary faced the authors of the 1997 IOM study Approaching Death, among many others (Hui et al., 2012)
From page 31...
... Finally, although the constellation of health challenges leading to death commonly confront people of advancing age, the committee understood the problem of end-of-life care to be relevant throughout the life cycle: infants die, most often of heritable or congenital disorders or sudden infant death syndrome; injuries are the leading cause of death for children; by adolescence and young adulthood, accidents and violence cause more than 70 percent of deaths; by age 45, cancers are the leading cause of death; and by age 65, heart disease is the leading killer (Heron, 2013)
From page 32...
... . APHA recommended that the needs of these individuals be addressed through improvements in pain management, advance care planning, use of hospice and palliative 4  WJF's R 10-year, $170 million investment in improving end-of-life care relied on a threepart strategy: improving clinicians' knowledge of and skills in care for the dying, encouraging institutional and policy changes that would facilitate the provision of good end-of-life care, and engaging a broad range of social institutions and leaders in creating a supportive environment for change (http://www.rwjf.org/content/dam/farm/reports/reports/2011/rwjf69582 [accessed December 16, 2014]
From page 33...
... State government offices and agencies, many of them participants in the RWJF-funded Community-State Partnerships to Improve End-of-Life Care, achieved various policy advances, as did the federal government, especially through the Health Care Financing Administration (now the Centers for Medicare & Medicaid Services [CMS]
From page 34...
... . In general, the number of pediatric deaths due to trauma and other acute causes has declined, while the number attributable to complex chronic conditions has risen.
From page 35...
... , congenital congenital cancer, cancer, suicide, problems, problems, congenital homicide pregnancy homicide problems, complications, homicide sudden infant death syndrome SOURCE: Heron, 2013. pneumonia are most deadly among people whose health is already compromised in some way, as well as the contribution of alcohol use, depression, and other such factors to suicide and unintentional injuries (e.g., fires, falls, drownings, vehicle and pedestrian accidents)
From page 36...
... . Table 1-5 shows the impact of having multiple chronic conditions on health care costs.
From page 37...
... . Functional limitations and disabilities likewise increase with age and as death approaches (Chaudhry et al., 2013; Smith et al., 2013)
From page 38...
... Vulnerable Individuals Many people are among those at heightened risk of poor-quality, highcost end-of-life care. Beyond the demographic factors discussed above, the following individuals are particularly vulnerable: • infants and children with congenital disorders, genetic diseases, or cancer; • people of any age with complex chronic conditions; • the elderly who have multiple chronic conditions, functional limita tions, and frailty; • people who have mental disorders or cognitive impairments, such as stroke, Alzheimer's disease, or other dementias; and
From page 39...
... health care system -- a system currently undergoing profound change. Significant opportunities exist to improve and align financial and programmatic incentives across health and social services programs, develop incentives to implement program models that have demonstrated how to achieve better care at lower cost, better target complex care interventions and tailor resources to individual needs, and use social services to ease the burden on families and enhance quality of life.
From page 40...
... Fundamental to this strategy is the need for -- and difficult work of -- breaking down a range of silos, for example, between "curative" and palliative care, between professional groups so as to foster interdisciplinary practice, and between traditional medical and social services. Development of a specific strategy, therefore, would require the broad engagement of multiple actors in the health care field and social and supporting services sector, as well as the organizations and institutions on which Americans rely for practical assistance, spiritual support, information, and advice as caregivers and as people with life-limiting illnesses.
From page 41...
... 2012. Chronic conditions among Medicare beneficiaries.
From page 42...
... 2013. Health care expenditures for adults with multiple treated chronic conditions: Estimates from the Medicare Expenditure Panel Survey, 2009.
From page 43...
... 2013. Change in end-of-life care for Medicare beneficiaries: Site of death, place of care, and health care transitions in 2000, 2005, and 2009.


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