By Lauren H. Nicholas, Julie P.W. Bynum, Theodore J. Iwashyna, David R. Weir, and Kenneth M. Langa

Transcription

1 By Lauren H. Nicholas, Julie P.W. Bynum, Theodore J. Iwashyna, David R. Weir, and Kenneth M. Langa Advance Directives And Nursing Home Stays Associated With Less Aggressive End-Of-Life Care For Patients With Severe Dementia doi: /hlthaff HEALTH AFFAIRS 33, NO. 4 (2014): Project HOPE The People-to-People Health Foundation, Inc. ABSTRACT The number of older adults with cognitive impairment is increasing, and such adults often require a surrogate to make decisions about health care. However, little is known about the aggressiveness of end-of-life care for these people, especially those who reside in the community. We found that cognitive impairment is common among older adults approaching the end of life, whether they live in the community or in a nursing home, and that nearly 30 percent of patients with severe dementia remained in the community until death. Among those patients, having an advance directive in the form of a living will was associated with significantly less aggressive care at the end of life, compared to similar patients without an advance directive as measured by Medicare spending ($11,461 less per patient), likelihood of in-hospital death (17.9 percentage points lower), and use of the intensive care unit (9.4 percentage points lower). In contrast, advance directives were not associated with differences in care for people with normal cognition or mild dementia, whether they resided in the community or in a nursing home. Timely advance care planning after a diagnosis of cognitive impairment may be particularly important for older adults who reside in the community. Lauren H. Nicholas (lnichola@ jhsph.edu) is an assistant professor in the Departments of Health Policy and Management and of Surgery at the Johns Hopkins Bloomberg School of Public Health and School of Medicine, in Baltimore, Maryland, and a faculty associate of the Survey Research Center, Institute for Social Research, University of Michigan, in Ann Arbor. Julie P.W. Bynum is an associate professor of medicine at the Dartmouth Institute for Health Policy and Clinical Practice, in Lebanon, New Hampshire. Theodore J. Iwashyna is an associate professor of pulmonary and critical care medicine and a faculty associate of the Survey Research Center, Institute for Social Research, both at the University of Michigan. More than one-third of Americans ages seventy-one and older have dementia or cognitive impairment without dementia (CIND). 1,2 Dementia, usually defined as memory and other cognitive deficits that are sufficient to cause limitations in daily functioning, is often underrecognized as a terminal, progressive condition. 3,4 This may result in end-of-life care for people with dementia that can be burdensome, painful, costly, and unlikely to improve their quality of life or chance of survival. 3 8 Little research has been done on end-of-life care for patients with dementia living in the community. However, many studies have raised concerns about the provision of potentially overaggressive care for patients with dementia in nursing homes. 3,9 11 In addition, there are questions about whether and how advance directives shape the care of patients with dementia Advance directives might play a particularly important role in the care of patients with cognitive impairment especially those with severe dementia because accurately identifying and respecting patients preferences for care is challenging in light of their difficulty in fully comprehending complex information Often when a patient with dementia is dying, decisions must be made about caring for his or her infections, nutrition, and emergency care. 18 Medical records for community-dwelling patients with dementia may not be available to guide such decisions when a patient urgently needs care. David R. Weir is a professor at the Survey Research Center, Institute for Social Research, University of Michigan. Kenneth M. Langa is a professor of medicine and public health, a research professor at the Institute for Social Research, and a research investigator at the Ann Arbor Veterans Affairs Healthcare System, all at the University of Michigan. April :4 Health Affairs 667

2 Many programs across the nation aim to address this gap by using standardized forms such as the Physician Orders for Life-Sustaining Treatment (POLST). The potential impact of these types of policy interventions on patients in the community as opposed to those in a nursing home is largely unknown. We investigated the interactions of nursing home stays, dementia, and the use of advance directives with the cost and aggressiveness of end-of-life care. We examined prospectively collected data on a nationally representative cohort of older Americans who underwent cognitive assessments and were linked to Medicare claims and postmortem interviews that were completed by proxy informants. We compared the aggressiveness of care provided to patients with severe dementia, CIND or mild dementia, or normal cognition with and without advance directives across the nursing home and community settings. We examined total Medicare spending in the six months before death a summary measure of use. We also examined the following three outcomes as measures of the aggressiveness of end-of-life care: in-hospital death, intensive care unit (ICU) stays, and life-sustaining treatments. 6,19 Our findings suggest that engaging the patient and family members in advance care planning when cognitive impairment is first diagnosed and documenting patients preferences in writing can lessen the burden that overly aggressive care places on patients and the Medicare program. Study Data And Methods Study Population We linked survey data from the nationally representative Health and Retirement Study (HRS) to Medicare claims for respondents who died in the period at age sixty-five or older 20 (additional information about our methods, sample, and results can be found in the online Appendix). 21 Our sample of 3,876 patients included survey respondents who had consented to the Medicare claims linkage (5,363 of 6,336 patients, or 84.6 percent), had fee-for-service Medicare coverage during the last six months of life (4,445 of 5,363 patients, or 82.9 percent), and had a postmortem interview completed by a proxy in 2000 or later (4,068 of 4,445 patients, or 91.5 percent), during which added questions about advance directives were asked. An additional 192 respondents who reported having coverage through the Veterans Affairs health system were excluded. Dementia Categorization We used HRS cognition measures from the respondent s last survey interview. 22 Details of the instruments and cutoff points we used are presented in the online Appendix 21 and have been described elsewhere. 23,24 In brief, the scales for patients and proxies responses indicating a level of impairment were based on gold standard CIND and dementia diagnoses validated in a previous study. 23,24 We characterized patients in our sample as having severe dementia if they were categorized as having dementia based on their HRS survey and also had limitations in at least three of the six activities of daily living (ADLs) walking, dressing, bathing, eating, getting into and out of bed, and using the toilet. Patients whose last HRS survey indicated CIND or dementia but had fewer than three ADL limitations were combined for this analysis in the category CIND/mild dementia. Aggressiveness Of End-Of-Life Treatment We used Medicare claims data to identify previously validated measures of aggressive and potentially burdensome end-of-life care. 6,19 We calculated total Medicare spending in the last six months of life in 2007 US dollars. We identified the following using Medicare Provider Analysis and Review (MedPAR) inpatient and skilled nursing files: receipt of life-sustaining treatments (intubation and mechanical ventilation, tracheostomy, gastrostomy feeding tube placement, hemodialysis, and enteral and parenteral nutrition), ICU use, and in-hospital death. 6,19 Advance Directives And Nursing Home Use HRS postmortem interviews with proxy respondents indicated whether the patient had had a written advance directive in the form of a living will that expressed a desire to limit care in certain situations a frequently used measure of advance directive status. 14,25,26 We compared patients with this form of written advance directive to all other patients because other research had found no independent effect of simply using a durable power of attorney without an additional living will. 14 To determine nursing home status, we used Medicare skilled nursing claims data and proxy reports of whether the patient was living in a nursing home at the time of death or during the two years before death (or the two years before the last interview). Statistical Analysis We used general linear models with a log link and gamma distribution to model Medicare spending and a logit link and binomial distribution for dichotomous treatment measures to test for differences in the use of health care in the last six months of life among patients with normal cognition, CIND/ mild dementia, and severe dementia. 21,27 Because patterns of care differ across sites of care, we stratified our results by nursing home use near 668 Health Affairs April :4

3 the end of life. In a second set of models, we interacted cognition with advance directive status to allow the effect of advance directives to vary for patients who likely had different needs for surrogate decision making. Regressions controlled for patients sociodemographic characteristics as measured in the survey wave prior to death and for Elixhauser comorbidities that we calculated from hospitalizations occurring six to eighteen months before death. 28 We also controlled for characteristics of the geographic regions where patients were treated, including nursing home capacity 29 and end-of-life spending levels. To ensure the robustness of our results, we performed a number of analyses described in the online Appendix. 21 Limitations Our research design required the use of Medicare claims. Consequently, we focused on decedents ages sixty-five and older, and we report only Medicare spending, not spending by other payers such as Medicaid or patients out-of-pocket spending. Medicaid claims are not yet available for HRS respondents, although Medicaid may cover a sizable portion of nursing home care. We classified cognition based on survey measures with cutoff points that had been validated against a full clinical assessment from the Aging, Demographics, and Memory Study. 23 This strategy has been shown to correctly classify 79 percent of HRS respondents compared to clinical exams, so there is a potential for misclassification. 24 Our dementia classification was conservative, however, because we used measures from interviews before the end-of-life period, when significant further decline occurs. Posthumous proxy reports indicated cognitive and physical decline between the last HRS interview and the last six months of life. At the last HRS interview, 34.2 percent of normal-cognition patients, 44.9 percent of those with CIND, and 78.9 percent of those with dementia had trouble with one or more ADL. These rates increased to 57.5 percent, 69.1 percent, and 87.7 percent, respectively, in the last three months of life. Physical declines were likely accompanied by declines in cognitive functioning. We do not know whether respondents were able to make complex decisions at the time decisions about their treatment in the last six months of life were made. However, our normal-cognition and CIND/mild dementia groups likely included patients with impaired capacity to make complex decisions. This would increase the likelihood that our results would show no difference across groups. Thus, our results probably understate the differences in end-of-life care use between patients with severe dementia and those with normal cognition. Study Results Our sample contained 3,876 Medicare beneficiaries ages sixty-five and older (see Appendix Exhibit 2 for a full description of the sample by levels of cognitive functioning). 21 Cognitive impairment was common among these patients at the time of their last HRS interview: 43.1 percent had CIND/mild dementia, and 21.7 percent met the criteria for severe dementia (Exhibit 1 and Appendix Exhibit 2) 21 at a mean of 436 days before death. Relative to patients with higher levels of cognitive functioning, patients with severe dementia were older at death (86.6 years versus 83.9 years for patients with CIND/mild dementia and 79.3 years for those with normal cognition), more likely to be nonwhite (21.6 percent versus 19.8 percent for patients with CIND/mild dementia and 8.6 percent for those with normal cognition), and less educated (56.7 percent had less than a high school education, compared to 51.6 percent for patients with CIND/mild dementia and 27.4 percent for those with normal cognition) (Appendix Exhibit 2). 21 The majority of patients with severe dementia Exhibit 1 Cognitive Functioning In 3,876 Health And Retirement Study Respondents With Linked Medicare Claims At Last Interview Before Dying In The Period Percent of respondents Normal cognition CIND/mild dementia Severe dementia SOURCE Authors analysis of Health and Retirement Study core and exit interviews linked to Medicare claims. NOTES On average, last interview took place 436 days before death. Patients in the cognitive impairment without dementia (CIND)/mild dementia category (n ¼ 1; 670) either had cognitive functioning consistent with mild cognitive impairment regardless of their physical functioning or had dementia symptoms and limitations in fewer than three activities of daily living (ADLs). Patients in the severe dementia category (n ¼ 839) had cognitive functioning consistent with dementia and limitations in three or more ADLs. Community-dwelling patients had no self-report of nursing home use or Medicare claim for skilled nursing home use in the last six months of life. April :4 Health Affairs 669

4 received nursing home care near the end of life. However, 28.7 percent (241 of 839 patients) remained in the community (Appendix Exhibit 2), 21 as did 51.4 percent (858 of 1,670) of patients with CIND/mild dementia. Only 36.4 percent of patients with severe dementia had treatment-limiting advance directives, and more of these patients living in nursing homes had such documents, compared to patients remaining in the community (40.0 percent versus 27.4 percent; Appendix Exhibit 2). 21 Severe Dementia And End-Of-Life Care Compared to patients with severe dementia living in the community, those who had a stay in a nursing home in the last six months of life had lower rates of use of the ICU (10.3 percent versus 17.1 percent; 95% confidence interval: 11.6, 1.6) and of in-hospital death (18.6 percent versus 26.5 percent; 95% CI: 13.6, 2.0) (Exhibit 2). However, there was no difference in Medicare spending across settings of care after we adjusted for patient characteristics. Compared to patients with CIND/mild dementia living in the community, those who had a stay in a nursing home had higher Medicare spending ($34,966 versus $22,943; 95% CI for difference: $9,163, $14,885) and were less likely to die in the hospital (22.5 percent versus 30.5 percent; 95% CI for difference: 11.9, 3.9) (Exhibit 2). Patients with CIND/mild dementia experienced similar rates of ICU use and life-sustaining treatment regardless of their nursing home use. Severe Dementia And Advance Directives Whether or not a patient with normal cognition or CIND/mild dementia had an advance directive had no statistically significant association with Medicare spending or with use of the ICU or lifesustaining treatments in the last six months of life (Appendix Exhibit 3). 21 Written advance directives were associated with lower Medicare spending and lower rates of in-hospital death, life-sustaining treatments and ICU use for patients with severe dementia. For these patients, there was an important difference in the relationship between having an advance directive and end-of-life care for patients in the community, in contrast to nursing home patients. Compared to patients with normal cognition, those with severe dementia had lower Medicare spending and ICU use and were less likely to die in the hospital when they had a stay in a nursing home whether or not they had treatment- Exhibit 2 Medicare Utilization In The Last Six Months Of Life Among Community-Based And Nursing Home Patients With Normal Cognition, Cognitive Impairment Without Dementia (CIND)/Mild Dementia, And Severe Dementia Who Died In The Period Patients in: Community (n = 2,064) Per capita Medicare spending ($1,000s) a Nursing home (n = 1,812) Normal cognition **** CIND/mild dementia **** Severe dementia In-hospital death (%) Normal cognition **** CIND/mild dementia **** Severe dementia *** Life-sustaining treatment (%) Normal cognition CIND/mild dementia Severe dementia ICU use (%) Normal cognition ** CIND/mild dementia Severe dementia *** Difference (community nursing home) SOURCE Authors analysis of Health and Retirement Study core and exit interviews linked to Medicare claims. NOTES Reported values are predicted spending (probabilities) calculated using average marginal effects from general linear model regressions of Medicare use in the last six months of life on cognitive functioning and patient characteristics. Patients in the CIND/mild dementia category (n ¼ 1; 670) either had cognitive functioning consistent with mild cognitive impairment regardless of their physical functioning or had dementia symptoms and limitations in fewer than three activities of daily living (ADLs). Patients in the severe dementia category (n ¼ 839) had cognitive functioning consistent with dementia and limitations in three or more ADLs. For in-hospital death, life-sustaining treatment, and intensive care unit (ICU) use, difference in the rightmost column is expressed in percentage points. a 2007 dollars. **p < 0:05 ***p < 0:01 ****p < 0: Health Affairs April :4

5 limiting advance directives. 30 Compared to patients in the nursing home with normal cognition, those with CIND/mild dementia had lower rates of in-hospital death and use of the ICU and life-sustaining treatment. Based on Medicare spending, communitydwelling patients with no advance directives and severe dementia received care similar to those with normal cognition ($32,169 versus $26,957) (Exhibit 3). However, communitydwelling patients who had advance directives and severe dementia received markedly less aggressive care than those with normal cognition ($20,708 versus $29,777). Community-dwelling patients with severe dementia and written advance directives incurred $11,461 less in Medicare spending in the last six months of life, compared to patients with severe dementia who remained in the community and did not have written advance directives. We found similar patterns for in-hospital death (patients with severe dementia and advance directives were 17.9 percentage points less likely than those without advance directives to die in the hospital), ICU stays ( 9.4 percentage points) and life-sustaining treatment ( 9.2 percentage points) (Exhibit 3). In contrast, the treatment of patients with CIND/mild dementia resembled that of patients with normal cognition. Discussion Using nationally representative data, we found that cognitive impairment was very common among older adults residing either in nursing homes or in the community near the end of life: 43.1 percent of our sample population had CIND/mild dementia, and 21.7 percent had severe dementia (Exhibit 1). To our knowledge, this is the first study to estimate the prevalence of cognitive impairment and dementia at the end of life and to examine the associated use and costs of health care for patients living in the community. As was the case with previous studies of nursing home residents, we found higher rates of in-hospital death, ICU stays, and lifesustaining treatment use among patients ages sixty-five and older with severe dementia or CIND/mild dementia than might be expected given their prognosis. Our study extended these results to show that aggressive care is common whether patients reside in nursing homes or the community. 3,6,7,9,31 35 Exhibit 3 Advance Directives And Medicare Utilization In The Last Six Months Of Life Among Patients With Normal Cognition, Cognitive Impairment Without Dementia (CIND)/Mild Dementia, And Severe Dementia Who Died In The Period Patients in: Community Normal cognition Per capita Medicare spending ($1,000s) a CIND/mild dementia Severe dementia Nursing home Normal cognition CIND/mild dementia Severe dementia No advance directive Advance directive Difference b *** ** 2.2 In-hospital death (%) No advance directive Advance directive Difference (percentage points) b **** 9.3*** ** Life-sustaining treatment (%) No advance directive Advance directive Difference (percentage points) b ICU use (%) No advance directive Advance directive Difference (percentage points) b *** SOURCE Authors analysis of Health and Retirement Study core and exit interviews linked to Medicare claims. NOTES For sample sizes, see Exhibit 2. Advance directive indicates having a written document indicating a preference for limited treatment in some circumstances. Predicted spending and probabilities of use in the last six months of life are based on average marginal effects from general linear model and logistic regressions adjusting for patient characteristics, including cognitive functioning; whether thepatienthadawrittenadvancedirectivespecifyinglimitsintreatment; and their interaction, stratified by nursing home use in the last six months of life. a 2007 dollars. b AD no AD. **p < 0:05 ***p < 0:01 ****p < 0:001 April :4 Health Affairs 671

6 In addition, we found that more than half of older adults remaining in the community in the last year of life were cognitively impaired: 41.6 percent had CIND/mild dementia, and 11.7 had severe dementia (Exhibit 1). Compared to similar patients who lived in nursing homes, the cognitively impaired patients in the community received much more aggressive care. This may have been because their cognitive impairment was not known to emergency health care providers, their preferences for care were less apparent to providers, or both. The lack of available data has restricted most previous studies of patients with dementia to those in the nursing home. Our findings highlight the need for additional research to determine whether aggressive care provided to community-dwelling patients with severe dementia is driven by patients preferences or other factors. Evidence for the overall effectiveness of advance directives is mixed. 14,1736 Nonetheless, we hypothesized that written advance directives could be particularly important in guiding the treatment of patients with severe dementia, who probably lack the capacity to participate in medical decision making. We found that being in a nursing home was associated with less aggressive end-of-life care, whether or not the patient had an advance directive. This result is consistent with findings in other studies of no differences among patients with and without advance directives. 17,36 However, we found a strong association between having an advance directive and receiving less aggressive treatment among communitydwelling patients with severe dementia. More than half of these patients experienced at least one hospitalization in the last six months of life in which surrogate decision making might have been needed, but only 27.4 percent had a written advance directive. Community-dwelling patients with severe dementia who had no advance directive received end-of-life care that was as aggressive as the care provided to patients with normal cognitive functioning. Advance directives were unrelated to total spending, total Medicare spending, ICU stays, and life-sustaining treatment receipt among people with normal cognition and CIND/mild dementia. That might be because these patients remained able to participate to a substantial degree in decision making. Our study was retrospective, and we were unable to establish a causal relationship between having a written advance directive and end-oflife outcomes. However, if the presence of a directive was merely an indication of preferences for less-aggressive care, we should have found Being in a nursing home was associated with less aggressive end-of-life care, whetherornotthe patient had an advance directive. differences in use across all levels of cognitive functioning. Additional research is needed to determine whether having an advance directive causes differences in end-of-life care for older adults with severe dementia. But given the ethical challenges associated with clinical trials in this population, observational information is also important. As people s circumstances change over time and acute situations arise, patients preferences are known to change. 13,37 Strict adherence to written advance directives could fail to take these changes into account in the case of patients who are capable of participating in decisions about treatment, such as those with CIND/mild dementia. We did not have detailed information about the individual decisions made for each patient. However, our findings suggest that having a written advance directive was related to moderation in the level of care for patients with severe dementia, but not for those with less impaired cognitive functioning. This result may be reassuring in light of concerns that the presence of an advance directive could cause physicians or surrogate decision makers to withhold treatments that patients at earlier stages of disease might prefer to receive. 12,13,38,39 Conclusion Cognitive impairment is remarkably common among older adults near the end of life, highlighting the value of advance care planning, especially for patients who reside in the community. Both written advance directives and nursing home residence are associated with lower rates of aggressive treatments that are often expensive but that are unlikely to extend the lives of patients with dementia and may decrease the quality of life. Efforts to engage patients and 672 Health Affairs April :4

7 Cognitive impairment is remarkably common among older adults near the end of life, and it highlights the value of advance care planning. family members in advance care planning when cognitive impairment is first diagnosed and patients are still living in the community might help ensure that a surrogate decision maker is identified and informed about the patient s preferences while these conversations are still possible. 40 We found that patients with CIND/mild dementia appeared to receive care that was more similar to care for people with normal cognition than that for people with severe dementia. It is not clear from our results whether the similarity of care was because the preferences of patients in the two groups were similar or because cognitive impairment was not recognized as a comorbidity associated with high mortality. For example, physicians responding to the acute cause of hospitalization for patients admitted from the community might be unable to distinguish longstanding cognitive impairment or dementia from acute changes in cognition, such as delirium, related to illness or the hospitalization itself. As a result, decisions about treatment might not fully take into account the terminal nature of dementia. Interventions to improve clinicians knowledge of a patient s diagnosis and preferences might help reduce the provision of potentially burdensome treatment to patients with severe dementia near the end of life. Such interventions include greater use of advance care planning in the community and of medical alert bracelets or other identifying diagnostic information, the implementation of Physician or Medical Orders for Life-Sustaining Treatment (POLST or MOLST), and the integration of living wills and information about treatment preferences into electronic health records. 41,42 Rates of advance care planning are increasing. 43 However, many patients are naming surrogate decision makers (using a durable power of attorney for health care) without giving them additional written instructions. Merely naming a proxy decision maker has not been found to be associated with less-aggressive care in a national sample of Medicare beneficiaries. 14 Thus, efforts to educate both patients and their families at the initial diagnosis about dementia and its progression may be necessary to prompt surrogates to learn about a patient s preferences and prognosis in a timely manner. Part of this article was presented at the annual meetings of the American Geriatrics Society, Grapevine, Texas, May 3, 2013, and AcademyHealth, Baltimore, Maryland, June 24, The authors thank the National Institute on Aging for supporting this research (Grant Nos. K01AG041763, U01 AG009740, and P01 AG031098) and Morris Hamilton and Ann Rodgers for excellent research and programming assistance. The findings do not represent the official views of the US government. NOTES 1 Plassman BL, Langa KM, Fisher GG, Heeringa SG, Weir DR, Ofstedal MB, et al. Prevalence of cognitive impairment without dementia in the United States. Ann Intern Med. 2008;148(6): Plassman BL, Langa KM, Fisher GG, Heeringa SG, Weir DR, Ofstedal MB, et al. Prevalence of dementia in the United States: the aging, demographics, and memory study. Neuroepidemiology. 2007;29(1 2): Mitchell SL, Teno JM, Kiely DK, Shaffer ML, Jones RN, Prigerson HG The clinical course of advanced dementia. N Engl J Med. 2009;361(16): 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): Ahronheim JC, Morrison RS, Baskin SA, Morris J, Meier DE. Treatment of the dying in the acute care hospital. Advanced dementia and metastatic cancer. Arch Intern Med. 1996; 156(18): 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): Teno JM, Gozalo PL, Mitchell SL, Kuo S, Rhodes RL, Bynum JP, et al. Does feeding tube insertion and its timing improve survival? J Am Geriatr Soc. 2012;60(10): Teno JM, Mor V, DeSilva D, Kabumoto G, Roy J, Wetle T. Use of feeding tubes in nursing home residents with severe cognitive impairment. JAMA. 2002;287(24): Cai S, Gozalo PL, Mitchell SL, Kuo S, Bynum JP, Mor V, et al. Do patients with advanced cognitive impairment admitted to hospitals with higher rates of feeding tube insertion have improved survival? J Pain Symptom Manage. 2013;45(3): Finucane TE, Christmas C, Travis K. Tube feeding in patients with ad- April :4 Health Affairs 673

8 vanced dementia: a review of the evidence. JAMA. 1999;282(14): Mitchell SL, Morris JN, Park PS, Fries BE. Terminal care for persons with advanced dementia in the nursing home and home care settings. J Palliat Med. 2004;7(6): Berger JT, DeRenzo EG, Schwartz J. Surrogate decision making: reconciling ethical theory and clinical practice. Ann Intern Med. 2008; 149(1): Fagerlin A, Schneider CE. Enough. The failure of the living will. Hastings Cent Rep. 2004;34(2): Nicholas LH, Langa KM, Iwashyna TJ, Weir DR. Regional variation in the association between advance directives and end-of-life Medicare expenditures. JAMA. 2011;306(13): Mitchell SL, Teno JM, Intrator O, Feng Z, Mor V. Decisions to forgo hospitalization in advanced dementia: a nationwide study. J Am Geriatr Soc. 2007;55(3): Mitchell SL, Teno JM, Roy J, Kabumoto G, Mor V. Clinical and organizational factors associated with feeding tube use among nursing home residents with advanced cognitive iimpairment. 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Med Care. 1998;36(1): Data were obtained from the Shaping Long Term Care in America Project at Brown University, funded in part by the National Institute on Aging (1P01AG027296), ltcfocus.org/, accessed 6 June Exhibit 3 presents these trends split by advance directive status. Analyses pooling across advance directive status are available from the authors on request. 31 Aminoff BZ, Adunsky A. Their last 6 months: suffering and survival of end-stage dementia patients. Age Ageing. 2006;35(6): Engel SE, Kiely DK, Mitchell SL. Satisfaction with end-of-life care for nursing home residents with advanced dementia. J Am Geriatr Soc. 2006;54(10): Gessert CE, Mosier MC, Brown EF, Frey B. Tube feeding in nursing home residents with severe and irreversible cognitive impairment. J Am Geriatr Soc. 2000;48(12): Mitchell SL, Kiely DK, Hamel MB. Dying with advanced dementia in the nursing home. Arch Intern Med. 2004;164(3): Teno JM, Gozalo PL, Lee IC, Kuo S, Spence C, Connor SR, et al. 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