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      Novel Approach, Using End-of-Life Issues, for Identifying Items for Public Health Surveillance

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      , MD, MHS , , MPH, , PhD
      Preventing Chronic Disease
      Centers for Disease Control and Prevention

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          Abstract

          Using end-of-life (EOL) issues to provide context, we introduce a novel approach to identify potential items for public health surveillance. Our method involved an environmental scan of existing EOL surveys and included the following steps: 1) consulting experts for advice on critical EOL topics, 2) identifying a broad sample of EOL surveys, and 3) using an abstraction tool to characterize surveys and survey items. We identified 36 EOL surveys; of these, 10 were state-based surveys. Of the 1,495 EOL items (range, 4 to 126 items per survey), 333 items could be classified in 1 of 11 topic areas of interest. Information on the surveys and these 333 items was entered into a database. As a result of this process, we identified topics for which many EOL items already exist and topics for which items should be developed. We describe the value of this approach and potential next steps for our project.

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          Most cited references18

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          Family perspectives on end-of-life care at the last place of care.

          Over the past century, nursing homes and hospitals increasingly have become the site of death, yet no national studies have examined the adequacy or quality of end-of-life care in institutional settings compared with deaths at home. To evaluate the US dying experience at home and in institutional settings. Mortality follow-back survey of family members or other knowledgeable informants representing 1578 decedents, with a 2-stage probability sample used to estimate end-of-life care outcomes for 1.97 million deaths from chronic illness in the United States in 2000. Informants were asked via telephone about the patient's experience at the last place of care at which the patient spent more than 48 hours. Patient- and family-centered end-of-life care outcomes, including whether health care workers (1) provided the desired physical comfort and emotional support to the dying person, (2) supported shared decision making, (3) treated the dying person with respect, (4) attended to the emotional needs of the family, and (5) provided coordinated care. For 1059 of 1578 decedents (67.1%), the last place of care was an institution. Of 519 (32.9%) patients dying at home represented by this sample, 198 (38.2%) did not receive nursing services; 65 (12.5%) had home nursing services, and 256 (49.3%) had home hospice services. About one quarter of all patients with pain or dyspnea did not receive adequate treatment, and one quarter reported concerns with physician communication. More than one third of respondents cared for by a home health agency, nursing home, or hospital reported insufficient emotional support for the patient and/or 1 or more concerns with family emotional support, compared with about one fifth of those receiving home hospice services. Nursing home residents were less likely than those cared for in a hospital or by home hospice services to always have been treated with respect at the end of life (68.2% vs 79.6% and 96.2%, respectively). Family members of patients receiving hospice services were more satisfied with overall quality of care: 70.7% rated care as "excellent" compared with less than 50% of those dying in an institutional setting or with home health services (P<.001). Many people dying in institutions have unmet needs for symptom amelioration, physician communication, emotional support, and being treated with respect. Family members of decedents who received care at home with hospice services were more likely to report a favorable dying experience.
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            Ten great public health achievements--United States, 1900-1999.

            (1999)
            During the 20th century, the health and life expectancy of persons residing in the United States improved dramatically. Since 1900, the average lifespan of persons in the United States has lengthened by >30 years; 25 years of this gain are attributable to advances in public health. To highlight these advances, MMWR will profile 10 public health achievements (see box) in a series of reports published through December 1999.
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              A controlled trial to improve care for seriously ill hospitalized patients. The study to understand prognoses and preferences for outcomes and risks of treatments (SUPPORT). The SUPPORT Principal Investigators.

              (1995)
              To improve end-of-life decision making and reduce the frequency of a mechanically supported, painful, and prolonged process of dying. A 2-year prospective observational study (phase I) with 4301 patients followed by a 2-year controlled clinical trial (phase II) with 4804 patients and their physicians randomized by specialty group to the intervention group (n = 2652) or control group (n = 2152). Five teaching hospitals in the United States. A total of 9105 adults hospitalized with one or more of nine life-threatening diagnoses; an overall 6-month mortality rate of 47%. Physicians in the intervention group received estimates of the likelihood of 6-month survival for every day up to 6 months, outcomes of cardiopulmonary resuscitation (CPR), and functional disability at 2 months. A specifically trained nurse had multiple contacts with the patient, family, physician, and hospital staff to elicit preferences, improve understanding of outcomes, encourage attention to pain control, and facilitate advance care planning and patient-physician communication. The phase I observation documented shortcomings in communication, frequency of aggressive treatment, and the characteristics of hospital death: only 47% of physicians knew when their patients preferred to avoid CPR: 46% of do-not-resuscitate (DNR) orders were written within 2 days of death; 38% of patients who died spent at least 10 days in an intensive care unit (ICU); and for 50% of conscious patients who died in the hospital, family members reported moderate to severe pain at least half the time. During the phase II intervention, patients experienced no improvement in patient-physician communication (eg, 37% of control patients and 40% of intervention patients discussed CPR preferences) or in the five targeted outcomes, ie, incidence or timing of written DNR orders (adjusted ratio, 1.02; 95% confidence interval [CI], 0.90 to 1.15), physicians' knowledge of their patients' preferences not to be resuscitated (adjusted ratio, 1.22; 95% CI, 0.99 to 1.49), number of days spent in an ICU, receiving mechanical ventilation, or comatose before death (adjusted ratio, 0.97; 95% CI, 0.87 to 1.07), or level of reported pain (adjusted ratio, 1.15; 95% CI, 1.00 to 1.33). The intervention also did not reduce use of hospital resources (adjusted ratio, 1.05; 95% CI, 0.99 to 1.12). The phase I observation of SUPPORT confirmed substantial shortcomings in care for seriously ill hospitalized adults. The phase II intervention failed to improve care or patient outcomes. Enhancing opportunities for more patient-physician communication, although advocated as the major method for improving patient outcomes, may be inadequate to change established practices. To improve the experience of seriously ill and dying patients, greater individual and societal commitment and more proactive and forceful measured may be needed.
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                Author and article information

                Contributors
                University of North Carolina Eshelman School of Pharmacy. At the time that this work was performed, Dr Rao was affiliated with the Centers for Disease Control and Prevention and Emory University School of Medicine, Atlanta Georgia.
                ,
                Centers for Disease Control and Prevention, Atlanta, Georgia
                Centers for Disease Control and Prevention, and Emory University Rollins School of Public Health, Atlanta, Georgia
                Journal
                Prev Chronic Dis
                Preventing Chronic Disease
                Centers for Disease Control and Prevention
                1545-1151
                April 2009
                15 March 2009
                : 6
                : 2
                : A57
                Affiliations
                University of North Carolina Eshelman School of Pharmacy. At the time that this work was performed, Dr Rao was affiliated with the Centers for Disease Control and Prevention and Emory University School of Medicine, Atlanta Georgia.
                Centers for Disease Control and Prevention, Atlanta, Georgia
                Centers for Disease Control and Prevention, and Emory University Rollins School of Public Health, Atlanta, Georgia
                Article
                PCDv62_08_0120
                2687863
                19289000
                ea3d7f10-8e86-4dfe-bd37-2196ccaa49dd
                Copyright @ 2009
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                Health & Social care
                Health & Social care

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