Epidemiology And Patterns Of Care At The End Of Life: Rising Complexity, Shifts In Care Patterns And Sites Of Death

In 2015 there were 2.7 million deaths in the United States (1 percent of the population), and the age-adjusted death rate was 733.1 deaths per 100,000 US standard population of 2000. ¹ As of 2014 life expectancy for the total population was 78.8 years. It was 4.8 years longer for females than for males—a gap that has been narrowing since the late 1970s. ¹

Increasing Diversity In Primary Diagnosis Of Decedents

A dramatic shift in the primary causes of death of US decedents has taken place in the past decade. Exhibit 1 shows the ten leading causes of death in 2015, which accounted for nearly 75 percent of all US deaths that year. Although heart disease accounted for the single largest proportion of all deaths, the number of deaths from heart disease declined by 10.8 percent between 2000 and 2015. There were similar declines in deaths from stroke (16.3 percent) and influenza or pneumonia (12.6 percent). The greatest increase between 2000 and 2015 was in deaths from Alzheimer’s disease—123 percent (61,000 decedents). This was a larger increase in both percentage and absolute terms than that for cancer (an increase of 7.7 percent, or 42,000 decedents) or chronic lower respiratory disease (27.1 percent, or 33,000 decedents). ¹

SOURCE Authors’ analysis of data from Centers for Disease Control and Prevention, CDC WONDER (Note  1 in text). NOTE Percentages were computed from CDC data that the authors grouped by year and diagnosis.

Some of the observed increases in Alzheimer’s disease as a cause of death may be due to an increase in its recognition and reporting on death certificates—the source of national statistics on cause of death—during the period 2000–15. ² Nevertheless, the absolute number of deaths from Alzheimer’s disease is likely even greater than that shown in Exhibit 1 , given that Alzheimer’s disease and dementia as a primary cause of death on death certificates is still considered to be underreported. ^2–4

Rise In Multimorbidity Among People With Terminal Illnesses

Although trends in the primary cause of death are important in understanding national population-based efforts to prevent and cure disease, focusing solely on single disease states (such as cancer) in attempts to understand the experience and care of people at the end of life is overly simplistic. Multimorbidity (having two or more chronic conditions) is common: Recent estimates are that approximately half of adults ages sixty-five and older and more than 70 percent of Medicare beneficiaries have multimorbidity. ^5–8 Slightly under 40 percent of Medicare beneficiaries have four or more chronic conditions. ⁹

Although differing definitions of multimorbidity across studies complicates longitudinal estimates of its prevalence, self-reported data from the National Health Interview Surveys indicate that the prevalence among adults ages 65 and older increased from 37 percent in 1999–2000 to 45 percent in 2009–10, and the prevalence among adults ages 45–64 increased from 16 percent to 21 percent in the same period. ⁵ It is estimated that the number of adults with multimorbidity will increase by more than a third between 2000 and 2030. ^10,11 Moreover, multimorbidity in combination with frailty and cognitive impairment is now considered the key marker for the complexity of a person’s care at the end of life. ¹²

Recent analyses of the spending patterns of adults in the last year of life report that multimorbidity is associated with higher end-of-life health care utilization and spending ¹³ —particularly multimorbidity in combination with functional limitations. ^14,15 In fact, only 11 percent of the individuals with the highest annual health care costs are in their last year of life, while an estimated 40 percent are not in their last year of life but are living with multimorbidity, functional limitations, and other conditions. ¹⁴ Among Medicare beneficiaries, patients with multiple morbidities are more likely than others to experience aggressive care at the end of life (for example, hospitalization, days in the intensive care unit [ICU], and the use of feeding tubes), with persistently high health care utilization. ¹³

End-of-life care for people with multimorbidity presents challenges for health care providers. Clinical practice guidelines that focus on single diseases can result in conflicting treatment recommendations, increasing the complexity of caring for such patients. ^16,17 Older adults with multimorbidity are often excluded from clinical trials, ^18–20 and studies rarely report the time horizon for the benefit or harm of treatments or changes in the quality of life ^11,21 —knowledge of which is critical to decision making for patients with limited life expectancy and their families. The potential psychological effects of limiting treatment for comorbidities in people with terminal illnesses are also substantial. ^22,23 Focusing on individual disease states without careful consideration of the impact of these interacting conditions and their associated treatments, symptom burden, cognitive and functional decline, and quality of life leads to the use of burdensome and costly interventions long after they meet the patient’s and family’s goals of care. ²⁴

The challenges of caregiving are also magnified by the increasingly complex nature of end-of-life care in the context of multimorbidity. An estimated 29 percent of the adult population are caregivers, ²⁵ and two-thirds of them are women. ^12,25 The average family caregiver spends about twenty hours per week, generally unpaid, in this role. The degree of burden experienced by caregivers varies: Many caregivers find deep gratification in their roles. ^26,27 However, the burden can be substantial, particularly when caregiving creates fear, helplessness (as can happen watching a loved one collapse or choke, believing that a loved one has died, or experiencing aggressive behavior by a loved one), and even, in some cases, traumatic stress. ^28,29 Caring for people with multimorbidity requires extensive medication management, coordination of medical providers from different specialties, and sometimes the use of medical equipment. In addition to physical and psychological burdens, caregiving can create financial burdens, particularly when it crowds out paid employment. ^25,30

As summarized by the Institute of Medicine, ¹² more and more family caregivers are needed in light of the increasing prevalence of chronic disease and estimates that the ratio of potential caregivers (people ages 45–64) to those ages 80 and older in the United States will fall from 7:1 in 2010 to 4:1 by 2030. ³¹ Focusing solely on resources required to care for a patient’s primary diagnosis and failing to consider what is required to address his or her multimorbidity and functional and cognitive needs at the end of life misses the mark on the necessary resources and expertise of health care providers and caregivers to care for them.

Shifts In End-Of-Life Patterns Of Care And Sites Of Death

Intensity Of Care At The End Of Life

The Institute of Medicine report Dying in America¹² emphasized the growing concerns about the intensity of care at the end of life. People nearing the end of life often experience multiple transitions in health care settings, which creates burdens for them and their families. ¹² Transitions to the hospital at the end of life can lead to nonbeneficial interventions, medical errors, injuries, increasing disability, worsening function, and adverse reactions for patients. ^24,32–37

Numerous studies indicate that the majority of people in the United States prefer not to have intensive hospital-based care when they die and would prefer to die at home. ^38–40 However, by most measures, the prevalence of high-intensity care at the end of life is on the rise. Our review of studies estimating the intensity of care at the end of life for fee-for-service Medicare beneficiaries, across all diseases, found that approximately two-thirds of individuals are hospitalized at least once in the last six months of life, one-quarter experience multiple hospitalizations, 40 percent spend time in the ICU, and almost half are admitted to a nursing home. In the last three days of life, 14 percent experience a transition in care setting, and 25 percent die in the hospital (for more details on end-of-life care intensity, see online Appendix Exhibit 1). ⁴¹ Longitudinal comparisons across studies are complicated by differing measures of intensity for end-of-life care. Nonetheless, early studies estimated the proportion of Medicare beneficiaries hospitalized in the last year of life to be slightly above 60 percent, ⁴² whereas more recent studies find the proportion hospitalized in the last three or six months of life to be closer to 70 percent ^43,44 (Appendix Exhibit 1). ⁴¹

Strikingly, even for patients who enroll in hospice, transitions to the hospital are common. ^45–47 An estimated 18 percent of hospice enrollees have emergency department (ED) visits, 13 percent are admitted to a hospital, and 4 percent are admitted to the ICU at some point after hospice enrollment. ⁴⁵ The number of transitions across health care settings after hospice enrollment has been found to range from two to nineteen. ⁴⁷ Substantial heterogeneity in these transition patterns across hospice providers is well documented, with hospitalization rates ranging from 0 percent of patients at some hospices to 55.6 percent at others, and ED visit rates ranging from 0 percent of patients at some hospices to 72.7 percent at others. ⁴⁵ These transitions, including those that result in the patient’s death in the hospital setting, are expensive, increasingly prevalent, and widely recognized as indicators of poor end-of-life care.

Proportion Of Decedents Cared For By Hospice

The use of hospice has changed considerably since its inception in the United States in the early 1970s. Hospice has been transformed from a grassroots, volunteer-based movement to a large-scale industry increasingly comprising for-profit corporations. Today the industry includes 6,100 hospice organizations (both primary locations and satellite offices), 68 percent of which are for-profit. ⁴⁸ In the early 1990s approximately 10 percent of decedents were under hospice care, whereas by 2014 nearly half of decedents had received hospice care. ⁴⁹

The shifts in the primary cause of death partially explain the more dramatic shifts in the primary diagnosis of hospice users ( Exhibit 2 ). In the early 1990s three-quarters of people who used hospice had a primary diagnosis of cancer, and only 1.1 percent had a primary diagnosis of Alzheimer’s disease. By 2014 an estimated 14.8 percent of hospice users had a primary diagnosis of Alzheimer’s disease. A second notable change is that although the number and proportion of people dying of heart disease has declined over time, as discussed above, the number and proportion of hospice users with heart disease has increased—which likely reflects greater awareness of and access to hospice on the part of people with heart disease. In contrast, the proportion of hospice users with cancer declined from 75.6 percent in 1992 to 35.6 percent in 2014.

SOURCE Authors’ analysis of data from the following sources: For 1992 and 1998, Government Accountability Office. Medicare: More beneficiaries use hospice but for fewer days of care [Internet]. Washington (DC): GAO; 2000 Sep [cited 2017 Jun 21]. (Pub. No. GAO/HEHS-00-182). Available from: http://www.gao.gov/new.items/he00182.pdf . For 2005 and 2014, National Hospice and Palliative Care Organization. NHPCO’s facts and figures (see Note  48 in text).

The change in hospice case-mix is related to the changing patterns of hospice use. ⁵⁰ As of 2014, 35.5 percent of hospice users had very short enrollments (less than one week in length), and 10.3 percent had very long enrollments (more than six months)—both larger proportions than in 2000. ⁵⁰Exhibit 3 depicts similar shifts between 2000 and 2010 for patients with cancer and noncancer diagnoses. Note that the fastest-growing group of hospice users—patients with noncancer diagnoses, whose conditions have a less predictable trajectory than those of patients with cancer diagnoses—were approximately twice as likely as those with cancer diagnoses to have very short or long enrollment periods or to disenroll from hospice, after differences in patient demographic and hospice provider characteristics were accounted for. ⁵⁰

SOURCE Authors’ analysis of data from Aldridge MD, et al. Has hospice use changed? (see Note  50 in text). NOTES “Very short enrollment” is defined as hospice enrollment for one week or less. “Very long enrollment” is defined as hospice enrollment for longer than six months. “Disenrollment” is defined as hospice care ending before the patient’s death. Each difference between 2000 and 2010 percentages is significant ( $p<0.001$ ), as indicated by $t$ -tests.

Shifts In Sites Of Death

Changes in sites of death in the United States have occurred during the past few decades, with a declining proportion of decedents dying in a hospital setting and a corresponding increase of those dying in the home setting ¹ (for the proportion of US decedents by site of death in 1999–2015, see online Appendix Exhibit 2). ⁴¹ The number of people who died in a hospital declined from 1,216,444 in 1999 to 996,190 in 2015 ( Exhibit 4 ). Deaths at home increased from 533,519 in 1999 to 807,579 in 2015.

SOURCE Authors’ analysis of data from Centers for Disease Control and Prevention, CDC WONDER (Note  1 in text). NOTE Percentages were computed from CDC data that the authors grouped by year and site of death.

In 1999, more than half of all US decedents died in the hospital, and slightly less than one-quarter died at home ( Exhibit 4 ). In 2015, 37 percent of decedents died in the hospital, and 30 percent died at home. The proportion of Americans dying in a nursing home or long-term care facility was fairly constant in the period 1999–2015, at 20–22 percent, but the proportion dying in an inpatient hospice facility rose from 0 percent in 1999 to 8 percent in 2015.

For decedents with a primary diagnosis of Alzheimer’s disease, statistics on the site of death exhibit a different trend. ¹ By far the most common site of death for such decedents in both 2000 and 2015 was a nursing home or long-term care facility ( Exhibit 5 ). But although the number of decedents dying with a primary diagnosis of Alzheimer’s disease in a nursing home or long-term care facility setting increased from 33,000 in 2000 to 58,000 in 2015, the proportion declined from 67 percent of decedents to 52 percent (see Appendix Exhibit 3). ⁴¹ Strikingly, the proportion dying at home almost doubled in the same period, from 15 percent to 26 percent. Relatively few people with a primary diagnosis of Alzheimer’s disease die in the hospital setting.

SOURCE Authors’ analysis of data from: Centers for Disease Control and Prevention, CDC WONDER (Note  1 in text). NOTE Percentages were computed from CDC data that the authors grouped by year and site of death.

Tensions To Be Managed To Ensure High-Quality, Accessible Care

Changing Epidemiology Puts New Pressures On Medicare’s Hospice Benefit

The shift in primary cause of death has important implications for both health policy and practice in end-of-life care. Because the Medicare hospice benefit was envisioned as a reimbursement mechanism primarily for the care of people with advanced cancer, key elements of the benefit are not optimal for the care of people with other diseases. To be eligible for the benefit, a patient must have a life expectancy of six months or less and must forgo Medicare reimbursement for care related to his or her terminal illness. For patients who have diseases for which prognostication accuracy is limited and who may require a mix of both hospice and acute care to manage symptoms, accessing the benefit can be problematic. This likely dampens the demand for hospice among people with diseases such as chronic obstructive pulmonary disease or congestive heart failure, which have less predictable clinical trajectories and often require hospitalization to manage symptoms.

The disconnect is also evident in the case of people with dementia. Although the number of hospice users with a primary diagnosis of dementia increased to 14.8 percent in 2014, ⁴⁸ and many hospices have developed expertise in dementia care, the “fit” of people with dementia within the regulatory framework of the Medicare hospice benefit can be problematic. Hospice enrollees with dementia often live longer than six months and are more likely than people with other conditions to experience disenrollment from hospice, ^50,51 which has been shown to be expensive and have negative effects on patients and their families. ⁵² Yet care at the end of life may be particularly complex for people with Alzheimer’s disease, because of difficulty in communication about preferences for care, management of complex symptoms, medication administration, and transitions across care settings. ⁵³

Recent efforts to reform the Medicare hospice benefit increased the hospice per diem reimbursement for the first days of hospice and reduced it for the remainder of the enrollment period, to more accurately reflect hospice costs. This reduces the compensation (and financial inducement) for long enrollment periods, which may benefit the patient, family, and hospice provider but are expensive for the Medicare program. The payment reform measures addressed the concern of the Medicare Payment Advisory Commission that the payment structure was vulnerable to patient selection, in that it led some hospices to pursue business models that maximized profit by enrolling patients more likely to have long enrollments—including those with dementia. ⁵⁴ With payment reform, the benefit to the hospice of a longer enrollment period has been attenuated. However, an unintended consequence of the reform may be a new barrier to hospice care for people with dementia.

Increasing Intensity Of End-Of-Life Care Despite Greater Use Of Hospice

One of the more striking paradoxes in end-of-life care is the simultaneous increases in the intensity of care via hospital use and procedures at the end of life and in the use of hospice. Hospice is intended for people with limited life expectancy (for example, six months if the disease follows its expected course) who desire palliative and supportive services as distinct from acute and curative treatments. The original hospice movement in the United States was based on the goal of providing a higher-quality death than that typically experienced in the hospital setting, where dying patients often suffered from significant pain and discomfort, lacked emotional and spiritual support, and faced uncertainty as to whether the life-prolonging medical interventions they received were consistent with their goals. ^55,56 As currently defined under the Medicare hospice benefit, hospice is a distinct choice related to prognosis, goals of care, and patient and family preference, and it may be initiated up to six months before death. Under this scenario, it is reasonable to expect what has been shown to be the case: that greater use of hospice is associated with less intensive care at the end of life, including fewer hospital admissions or intensive procedures. ^57,58

What has emerged as a relatively new pattern of hospice use, however, is hospice enrollment as an “add-on” in health care after the extensive use of other health care services and within days of death. ^43,59 This pattern is clear in a recent analysis of Medicare decedents in their last six months of life. ⁵⁹ The study found higher rates of hospital admission, ED use, and ICU stays in the last six months of life for people who enrolled in hospice in their last seven days of life (83.6 percent, 74.4 percent, and 50.1 percent, respectively), compared with those who did not enroll in hospice at all (68.4 percent, 58.2 percent, and 45.3 percent, respectively). This patient-level finding is confirmed at the regional level, with US areas with the highest intensity of end-of-life care also having significantly higher rates of very short hospice enrollment, compared with areas with the lowest intensity of end-of-life care.

The structure of the Medicare hospice benefit is largely to blame for this puzzling finding. As noted above, current eligibility criteria require that hospice enrollees forgo reimbursement from Medicare for treatment of their terminal diagnosis and that they be certified as having six months or less to live. These criteria create an artificial dichotomy between curative and palliative treatment that results in delays in hospice enrollment and reduces its potential benefit for patients and families. Indeed, only one-third of hospices will enroll patients who are receiving chemotherapy, only one-half will enroll patients receiving total parenteral nutrition, and only two-thirds will enroll patients who wish to continue to receive palliative radiation. ⁶⁰ The Medicare Care Choices Model demonstration project ⁶¹ that is evaluating the use of concurrent care may provide the impetus for reform of the Medicare hospice benefit to better align it with dying patients’ clinical and health care preferences.

In the absence of policy changes to the benefit, greater access to “upstream” palliative care services has the potential to reverse the trend of increasingly intensive end-of-life care followed by late hospice use. This could be achieved through more comprehensive reimbursement for hospital-based palliative care teams and increased funding for education and training of palliative care teams. Growth in risk-sharing models of care—including accountable care organizations, Medicare Advantage, and Medicaid managed care—that use palliative care teams has similar potential. However, although retrospective analyses of decedents with high-intensity care followed by late hospice enrollment clearly identify a population that could benefit from earlier palliative care services, the prospective identification of this group remains a substantial challenge.

Conclusion

To ensure access to high-quality end-of-life care for all decedents in the United States, an evolving understanding of the characteristics and experiences of patients in their last phase of life is crucial. Advances in science, medicine, and public health have gradually changed the primary causes of death, while simultaneously increasing the prevalence of people living with a complex mix of conditions and symptom burden. From a policy perspective, the epidemiology and patterns of care of decedents should compel policy makers to consider whether and how the Medicare hospice benefit should be modified to be better aligned with evolving patient needs. Options include expanding access to hospice for patients who need or want concurrent care or suffer from diseases whose progression is more difficult to predict. Alternatively, the needs of decedents for whom hospice is not the optimal model of care could be met through other palliative care models, which would need to be supported through greater research, funding, and implementation. Or perhaps the most effective means of ensuring access to high-quality end-of-life care is to pursue both strategies. Ongoing attention to the epidemiology of decedents and their patterns of care will ensure that research, policy, and regulatory efforts remain aligned with relevant patient and family end-of-life experiences.

ACKNOWLEDGMENTS

Melissa Aldridge received support from the National Institute of Nursing Research (Grant No. 5R01NR013499). Elizabeth Bradley received support from the John D. Thompson Foundation.

NOTES

• 1 Centers for Disease Control and Prevention . CDC WONDER [Internet]. Atlanta (GA) : CDC ; [last reviewed 2017 Mar 16; cited 2017 May 12 ]. Available from: https://wonder.cdc.gov Google Scholar
• 2 Gillum RF , Yorrick R , Obisesan TO . Population surveillance of dementia mortality . Int J Environ Res Public Health . 2011 ; 8 ( 4 ): 1244 – 57 . Crossref, Medline, Google Scholar
• 3 Wachterman M , Kiely DK , Mitchell SL . Reporting dementia on the death certificates of nursing home residents dying with end-stage dementia . JAMA . 2008 ; 300 ( 22 ): 2608 – 10 . Crossref, Medline, Google Scholar
• 4 James BD , Leurgans SE , Hebert LE , Scherr PA , Yaffe K , Bennett DA . Contribution of Alzheimer disease to mortality in the United States . Neurology . 2014 ; 82 ( 12 ): 1045 – 50 . Crossref, Medline, Google Scholar
• 5 Freid VM , Bernstein AB , Bush MA . Multiple chronic conditions among adults aged 45 and over: trends over the past 10 years [Internet]. Hyattsville (MD) : National Center for Health Statistics ; 2012 Jul [cited 2017 May 12 ]. ( NCHS Data Brief No. 100) . Available from: https://www.cdc.gov/nchs/data/databriefs/db100.pdf Google Scholar
• 6 Jindai K , Nielson CM , Vorderstrasse BA , Quiñones AR . Multimorbidity and functional limitations among adults 65 or older, NHANES 2005–2012 . Prev Chronic Dis. 2016 ; 13 : E151 . Crossref, Medline, Google Scholar
• 7 Lochner KA , Cox CS . Prevalence of multiple chronic conditions among Medicare beneficiaries, United States, 2010 . Prev Chronic Dis. 2013 ; 10 : 120137 . Crossref, Google Scholar
• 8 Diederichs C , Berger K , Bartels DB . The measurement of multiple chronic diseases—a systematic review on existing multimorbidity indices . J Gerontol A Biol Sci Med Sci . 2011 ; 66 ( 3 ): 301 – 11 . Crossref, Medline, Google Scholar
• 9 Kelley AS , Ettner SL , Morrison RS , Du Q , Wenger NS , Sarkisian CA . Determinants of medical expenditures in the last 6 months of life . Ann Intern Med . 2011 ; 154 ( 4 ): 235 – 42 . Crossref, Medline, Google Scholar
• 10 Wu S , Green A . Projection of chronic illness prevalence and cost inflation . Santa Monica (CA) : RAND Corporation ; 2000 . Google Scholar
• 11 Ritchie CS , Zulman DM . Research priorities in geriatric palliative care: multimorbidity . J Palliat Med . 2013 ; 16 ( 8 ): 843 – 7 . Crossref, Medline, Google Scholar
• 12 Institute of Medicine . Dying in America: improving quality and honoring individual preferences near the end of life . Washington (DC) : National Academies Press ; 2015 . Google Scholar
• 13 Davis MA , Nallamothu BK , Banerjee M , Bynum JP . Identification of four unique spending patterns among older adults in the last year of life challenges standard assumptions . Health Aff (Millwood) . 2016 ; 35 ( 7 ): 1316 – 23 . Go to the article, Google Scholar
• 14 Aldridge MD , Kelley AS . Epidemiology of serious illness and high utilization of health care . In: Institute of Medicine. Dying in America: improving quality and honoring individual preferences near the end of life . Washington (DC) : National Academies Press ; 2015 . p. 487 – 532 . Google Scholar
• 15 Aldridge MD , Kelley AS . The myth regarding the high cost of end-of-life care . Am J Public Health . 2015 ; 105 ( 12 ): 2411 – 5 . Crossref, Medline, Google Scholar
• 16 Boyd CM , Darer J , Boult C , Fried LP , Boult L , Wu AW . Clinical practice guidelines and quality of care for older patients with multiple comorbid diseases: implications for pay for performance . JAMA . 2005 ; 294 ( 6 ): 716 – 24 . Crossref, Medline, Google Scholar
• 17 Werner RM , Asch DA . Clinical concerns about clinical performance measurement . Ann Fam Med . 2007 ; 5 ( 2 ): 159 – 63 . Crossref, Medline, Google Scholar
• 18 Jadad AR , To MJ , Emara M , Jones J . Consideration of multiple chronic diseases in randomized controlled trials . JAMA . 2011 ; 306 ( 24 ): 2670 – 2 . Crossref, Medline, Google Scholar
• 19 Van Spall HG , Toren A , Kiss A , Fowler RA . Eligibility criteria of randomized controlled trials published in high-impact general medical journals: a systematic sampling review . JAMA . 2007 ; 297 ( 11 ): 1233 – 40 . Crossref, Medline, Google Scholar
• 20 Zulman DM , Sussman JB , Chen X , Cigolle CT , Blaum CS , Hayward RA . Examining the evidence: a systematic review of the inclusion and analysis of older adults in randomized controlled trials . J Gen Intern Med . 2011 ; 26 ( 7 ): 783 – 90 . Crossref, Medline, Google Scholar
• 21 Fried TR , Bradley EH , Towle VR , Allore H . Understanding the treatment preferences of seriously ill patients . N Engl J Med . 2002 ; 346 ( 14 ): 1061 – 6 . Crossref, Medline, Google Scholar
• 22 Currow DC , Phillips JL . Chronic conditions and cancer at the end of life . In: Koczwara B , editor. Cancer and chronic conditions: addressing the problem of multimorbidity in cancer patients and survivors . Singapore : Springer ; c 2016 . p. 455 – 75 . Crossref, Google Scholar
• 23 Stevenson J , Abernethy AP , Miller C , Currow DC . Managing comorbidities in patients at the end of life . BMJ . 2004 ; 329 ( 7471 ): 909 – 12 . Crossref, Medline, Google Scholar
• 24 Teno JM , Gozalo P , Khandelwal N , Curtis JR , Meltzer D , Engelberg R , et al. Association of increasing use of mechanical ventilation among nursing home residents with advanced dementia and intensive care unit beds . JAMA Intern Med . 2016 ; 176 ( 12 ): 1809 – 16 . Crossref, Medline, Google Scholar
• 25 National Alliance for Caregiving, AARP . Caregiving in the U.S.: 2009 [Internet]. Bethesda (MD) : NAC ; 2009 Nov [cited 2017 May 12 ]. Available from: http://www.caregiving.org/data/Caregiving_in_the_US_2009_full_report.pdf Google Scholar
• 26 Hebert RS , Schulz R . Caregiving at the end of life . J Palliat Med . 2006 ; 9 ( 5 ): 1174 – 87 . Crossref, Medline, Google Scholar
• 27 Tarlow BJ , Wisniewski SR , Belle SH , Rubert M , Ory MG , Gallagher-Thompson D . Positive aspects of caregiving: contributions of the REACH Project to the development of new measures for Alzheimer’s caregiving . Res Aging . 2004 ; 26 ( 4 ): 429 – 53 . Crossref, Google Scholar
• 28 Jacobs S , Mazure C , Prigerson H . Diagnostic criteria for traumatic grief . Death Stud . 2000 ; 24 ( 3 ): 185 – 99 . Crossref, Medline, Google Scholar
• 29 Prigerson HG , Cherlin E , Chen JH , Kasl SV , Hurzeler R , Bradley EH . The Stressful Caregiving Adult Reactions to Experiences of Dying (SCARED) Scale: a measure for assessing caregiver exposure to distress in terminal care . Am J Geriatr Psychiatry . 2003 ; 11 ( 3 ): 309 – 19 . Crossref, Medline, Google Scholar
• 30 Feinberg L , Reinhard SC , Houser A , Choula R . Valuing the invaluable: 2011 update: the growing contribution and costs of family caregiving [Internet]. Washington (DC) : AARP Public Policy Institute ; 2011 [cited 2017 May 12 ]. Available from: http://assets.aarp.org/rgcenter/ppi/ltc/i51-caregiving.pdf Google Scholar
• 31 Redfoot D , Feinberg L , Houser A . The aging of the baby boom and the growing care gap: a look at future declines in the availability of family caregivers [Internet]. Washington (DC) : AARP Public Policy Institute ; 2013 [cited 2017 May 12 ]. Available from: http://www.aarp.org/content/dam/aarp/research/public_policy_institute/ltc/2013/baby-boom-and-the-growing-care-gap-in-brief-AARP-ppi-ltc.pdf Google Scholar
• 32 Gill TM , Gahbauer EA , Han L , Allore HG . The role of intervening hospital admissions on trajectories of disability in the last year of life: prospective cohort study of older people . BMJ . 2015 ; 350 : h2361 . Crossref, Medline, Google Scholar
• 33 Mitchell SL , Teno JM , Kiely DK , Shaffer ML , Jones RN , Prigerson HG , et al. The clinical course of advanced dementia . N Engl J Med . 2009 ; 361 ( 16 ): 1529 – 38 . Crossref, Medline, Google Scholar
• 34 Gozalo P , Teno JM , Mitchell SL , Skinner J , Bynum J , Tyler D , et al. End-of-life transitions among nursing home residents with cognitive issues . N Engl J Med . 2011 ; 365 ( 13 ): 1212 – 21 . Crossref, Medline, Google Scholar
• 35 De Vries EN , Ramrattan MA , Smorenburg SM , Gouma DJ , Boermeester MA . The incidence and nature of in-hospital adverse events: a systematic review . Qual Saf Health Care . 2008 ; 17 ( 3 ): 216 – 23 . Crossref, Medline, Google Scholar
• 36 Covinsky KE , Pierluissi E , Johnston CB . Hospitalization-associated disability: “She was probably able to ambulate, but I’m not sure.” JAMA . 2011 ; 306 ( 16 ): 1782 – 93 . Crossref, Medline, Google Scholar
• 37 Gill TM , Allore HG , Gahbauer EA , Murphy TE . Change in disability after hospitalization or restricted activity in older persons . JAMA . 2010 ; 304 ( 17 ): 1919 – 28 . Crossref, Medline, Google Scholar
• 38 Higginson IJ , Sen-Gupta GJ . Place of care in advanced cancer: a qualitative systematic literature review of patient preferences . J Palliat Med . 2000 ; 3 ( 3 ): 287 – 300 . Crossref, Medline, Google Scholar
• 39 Barnato AE , Herndon MB , Anthony DL , Gallagher PM , Skinner JS , Bynum JP , et al. Are regional variations in end-of-life care intensity explained by patient preferences? A study of the US Medicare population . Med Care . 2007 ; 45 ( 5 ): 386 – 93 . Crossref, Medline, Google Scholar
• 40 Fischer S , Min SJ , Cervantes L , Kutner J . Where do you want to spend your last days of life? Low concordance between preferred and actual site of death among hospitalized adults . J Hosp Med . 2013 ; 8 ( 4 ): 178 – 83 . Crossref, Medline, Google Scholar
• 41 To access the Appendix, click on the Appendix link in the box to the right of the article online.
• 42 Riley GF , Lubitz JD . Long-term trends in Medicare payments in the last year of life . Health Serv Res . 2010 ; 45 ( 2 ): 565 – 76 . Crossref, Medline, Google Scholar
• 43 Teno JM , Gozalo PL , Bynum JP , Leland NE , Miller SC , Morden NE , et al. Change in end-of-life care for Medicare beneficiaries: site of death, place of care, and health care transitions in 2000, 2005, and 2009 . JAMA . 2013 ; 309 ( 5 ): 470 – 7 . Crossref, Medline, Google Scholar
• 44 Wang SY , Aldridge MD , Gross CP , Canavan M , Cherlin E , Johnson-Hurzeler R , et al. End-of-life care intensity and hospice use: a regional-level analysis . Med Care . 2016 ; 54 ( 7 ): 672 – 8 . Crossref, Medline, Google Scholar
• 45 Aldridge MD , Epstein AJ , Brody AA , Lee EJ , Cherlin E , Bradley EH . The impact of reported hospice preferred practices on hospital utilization at the end of life . Med Care . 2016 ; 54 ( 7 ): 657 – 63 . Crossref, Medline, Google Scholar
• 46 Aldridge MD , Epstein EJ , Brody AA , Lee EJ , Morrison RS , Bradley EH . Hospices with higher spending on patient care have lower rates of hospitalization . Oral presentation at: AcademyHealth Annual Research Meeting ; 2016 Jun 27 ; Boston, MA . Google Scholar
• 47 Wang SY , Aldridge MD , Gross CP , Canavan M , Cherlin E , Johnson-Hurzeler R , et al. Transitions between healthcare settings of hospice enrollees at the end of life . J Am Geriatr Soc . 2016 ; 64 ( 2 ): 314 – 22 . Crossref, Medline, Google Scholar
• 48 National Hospice and Palliative Care Organization . NHPCO’s facts and figures: hospice care in America [Internet]. Alexandria (VA) : NHPCO ; 2015 Sep [cited 2017 May 12 ]. Available from: http://www.nhpco.org/sites/default/files/public/Statistics_Research/2015_Facts_Figures.pdf Google Scholar
• 49 Authors’ estimates based on National Vital Statistics System mortality data for 2014 and National Hospice and Palliative Care Organization data (see Note 48).
• 50 Aldridge MD , Canavan M , Cherlin E , Bradley EH . Has hospice use changed? 2000–2010 utilization patterns . Med Care . 2015 ; 53 ( 1 ): 95 – 101 . Crossref, Medline, Google Scholar
• 51 Teno JM , Plotzke M , Gozalo P , Mor V . A national study of live discharges from hospice . J Palliat Med . 2014 ; 17 ( 10 ): 1121 – 7 . Crossref, Medline, Google Scholar
• 52 Carlson MD , Herrin J , Du Q , Epstein AJ , Barry CL , Morrison RS , et al. Impact of hospice disenrollment on health care use and Medicare expenditures for patients with cancer . J Clin Oncol . 2010 ; 28 ( 28 ): 4371 – 5 . Crossref, Medline, Google Scholar
• 53 Mitchell SL , Black BS , Ersek M , Hanson LC , Miller SC , Sachs GA , et al. Advanced dementia: state of the art and priorities for the next decade . Ann Intern Med . 2012 ; 156 ( 1 Pt 1 ): 45 – 51 . Crossref, Medline, Google Scholar
• 54 Medicare Payment Advisory Commission . Report to the Congress: Medicare Payment Policy [Internet]. Washington (DC) : MedPAC ; 2013 Mar . Chapter 12, Hospice services; [cited 2017 May 12 ]. p. 261–84. Available from: http://www.medpac.gov/docs/default-source/reports/mar13_entirereport.pdf Google Scholar
• 55 Carlson MD , Morrison RS , Bradley EH . Improving access to hospice care: informing the debate . J Palliat Med . 2008 ; 11 ( 3 ): 438 – 43 . Crossref, Medline, Google Scholar
• 56 Paradis LF , Cummings SB . The evolution of hospice in America toward organizational homogeneity . J Health Soc Behav . 1986 ; 27 ( 4 ): 370 – 86 . Crossref, Medline, Google Scholar
• 57 Wennberg JE , Fisher ES , Stukel TA , Skinner JS , Sharp SM , Bronner KK . Use of hospitals, physician visits, and hospice care during last six months of life among cohorts loyal to highly respected hospitals in the United States . BMJ . 2004 ; 328 ( 7440 ): 607 . Crossref, Medline, Google Scholar
• 58 Kelley AS , Deb P , Du Q , Aldridge Carlson MD , Morrison RS . Hospice enrollment saves money for Medicare and improves care quality across a number of different lengths-of-stay . Health Aff (Millwood) . 2013 ; 32 ( 3 ): 552 – 61 . Go to the article, Google Scholar
• 59 Wang SY , Aldridge MD , Gross CP , Canavan M , Cherlin E , Johnson-Hurzeler R , et al. Geographic variation of hospice use patterns at the end of life . J Palliat Med . 2015 ; 18 ( 9 ): 771 – 80 . Crossref, Medline, Google Scholar
• 60 Aldridge Carlson MD , Barry CL , Cherlin EJ , McCorkle R , Bradley EH . Hospices’ enrollment policies may contribute to underuse of hospice care in the United States . Health Aff (Millwood) . 2012 ; 31 ( 12 ): 2690 – 8 . Go to the article, Google Scholar
• 61 CMS.gov . Medicare Care Choices Model [Internet]. Baltimore (MD) : Centers for Medicare and Medicaid Services ; [last updated 2017 Feb 13; cited 2017 May 12 ]. Available from: http://innovation.cms.gov/initiatives/Medicare-Care-Choices Google Scholar