{"id":47229,"date":"2004-07-07T00:00:00","date_gmt":"2004-07-07T05:00:00","guid":{"rendered":"https:\/\/www.unmc.edu\/newsroom\/2004\/07\/07\/end-of-life-care-moving-from-hospital-to-community-settingresearchers-say-new-clinical-skills-health-policies-needed\/"},"modified":"2022-08-28T21:42:55","modified_gmt":"2022-08-29T02:42:55","slug":"end-of-life-care-moving-from-hospital-to-community-settingresearchers-say-new-clinical-skills-health-policies-needed","status":"publish","type":"post","link":"https:\/\/www.unmc.edu\/newsroom\/2004\/07\/07\/end-of-life-care-moving-from-hospital-to-community-settingresearchers-say-new-clinical-skills-health-policies-needed\/","title":{"rendered":"End-of-life care moving from hospital to community-setting;\nresearchers say new clinical skills, health policies needed"},"content":{"rendered":"<div class=\"panel body-content\"><div class=\"panel__container\"><p>As the nationwide trend in where terminally ill people die shifts from<br \/>\nhospital to community-based settings, researchers say new clinical skills<br \/>\nand health policies are needed for support and services for people and<br \/>\ntheir families.<\/p>\n<p>This was the conclusion of an article recently published by Virginia<br \/>\nTilden, D.N.Sc., dean of the UNMC College of Nursing, Susan Tolle, Ph.D.,<br \/>\nco-investigator, and former co-investigators at the Oregon Health &amp;<br \/>\nScience University in Portland. Their conclusions support a wealth of articles<br \/>\non the subject, including a 1997 report by the U.S. Institute of Medicine,<br \/>\nApproaching Death: Improving Care at the End of Life, which urged better<br \/>\nattention to the quality of life for dying patients and their families.<\/p>\n<p>Published in the Journal of the American Geriatrics Society, Out-of-Hospital<br \/>\nDeath: Advance Care Planning, Decedent Symptoms, and Caregiver Burden,<br \/>\nthe article focused on what families experiences were in helping to take<br \/>\ncare of the terminally ill. The study was supported by the National Institute<br \/>\nof Nursing Research and The Robert Wood Johnson Foundation.<\/p>\n<p>The team conducted the study in part because of the lack of scientific<br \/>\ninformation about families experiences of caring for the terminally ill<br \/>\nin community settings. The study contains information of family experiences<br \/>\nas it cares for a terminally-ill family member the last six months of life.<\/p>\n<p>Working from death certificates of those 65 and older who died in the<br \/>\ncommunity from natural causes, the researchers surveyed 1,189 families.<br \/>\nAbout 2 million Medicare beneficiaries die each year in the U.S., a number<br \/>\nofficials estimate will increase with Americas aging population.<\/p>\n<p>Dr. Tilden said the objective was to examine the end-of-life experiences<br \/>\nof older adults dying outside of the hospital setting, and their family<br \/>\ncaregivers. They conducted the study in Oregon, where Dr. Tilden served<br \/>\nbefore joining UNMC. As in most states across the United States,<br \/>\nthe vast majority of Oregon Medicare deaths occur in community settings.<\/p>\n<p>She said as the country moves from medically aggressive, and sometimes<br \/>\nunnecessary, treatment to more palliative care for the terminally ill,<br \/>\nmore people are dying in community settings such as the home, in nursing<br \/>\nhomes or hospice. Palliative care focuses on the management of symptoms<br \/>\nand improving quality of life of a terminally ill person.<\/p>\n<p>Overall, there is a trend toward moving end-of-life care to community<br \/>\nsettings, such as home, in-patient hospice, nursing home or assisted living,<br \/>\nDr. Tilden said. Out-of-hospital death rates are an important indicator<br \/>\nof less aggressive and more palliative treatment at the end of life.<\/p>\n<p>Researchers say one of the major and most startling findings of the<br \/>\nstudy was the number of families who experienced financial strain. Though<br \/>\nonly 1 percent of those surveyed were without Medicare or private health<br \/>\ninsurance, the financial burden was high for families.<\/p>\n<p>Our study adds verification that the family shoulders a lot of the<br \/>\nfinancial burden in the last six months of care in a community-based setting.<br \/>\nYou have exhausted families ending up with serious medical bills and out-of-pocket<br \/>\nexpenses. Its not satisfactory from the family perspective. The costs<br \/>\nare not what people want, Dr. Tilden said.<\/p>\n<p>In the wealthiest country in the world, two-thirds experience financial<br \/>\nhardship. One-third lost all their savings taking care of their loved one.<br \/>\nIf we value taking care of people until they die, we cant ignore how<br \/>\nmuch care and cost is shouldered by families. At an increasing rate, families<br \/>\nare in that picture, Dr. Tilden said.<\/p>\n<p>  Medications account for one of the highest out-of-pocket expenses for<br \/>\nfamilies  mostly for pain medications, she said.<\/p>\n<p>According to the Dartmouth Atlas of Health Care 1999, the percentage<br \/>\nof Medicare deaths in the U.S. that occurred out of the hospital ranged<br \/>\nstate-to-state from 51.2 percent to 90.1 percent, indicating a wide regional<br \/>\nvariation in how and where end-of-life care is managed.<\/p>\n<p>The rate in Nebraska of the terminally ill who die at home versus the<br \/>\nhospital varies from city to city. According to the Dartmouth Atlas Quick<br \/>\nReport for Iowa and Nebraska, the likelihood of a hospitalized death ranged<br \/>\nfrom 23.9 percent to 35.3 percent in 1999. Dr. Tilden said the Nebraska<br \/>\nstatistics reflect what most Americans want.<\/p>\n<p>Surveys show the majority of Americans say they dont want to die hooked<br \/>\nup to machines in a hospital, Dr. Tilden said. They say theyd rather<br \/>\ndie in a place thats familiar to them  in their home or nursing home.<br \/>\nOf course, theres a time and a place for aggressive medical care if theres<br \/>\na chance of recovery and getting up and walking out of the hospital.<\/p>\n<p>Another major finding was poor management of some of the most common<br \/>\ndistressing symptoms at the end of life, including pain, shortness of breath<br \/>\nand constipation.<\/p>\n<p>Community-based care is good but more steps need to be taken to manage<br \/>\ndistressing symptoms and give support to the family. Aggressive management<br \/>\nand early treatment can help prevent and ward off the symptoms, Dr. Tilden<br \/>\nsaid.<\/p>\n<p>As hard as our health professionals are working, there still is a high level<br \/>\n  of unacceptable occurrences of these manageable symptoms. Witnessing a loved<br \/>\n  one suffer is difficult for caregivers. We would like<br \/>\nto see clinicians be more aggressive in management of these symptoms,<br \/>\nshe said.<\/p>\n<p>Through the study, Dr. Tilden and her colleagues also found many families<br \/>\narent aware that hospice care is free for Medicare recipients. She said<br \/>\nfor various reasons, including some people die before they get into hospice,<br \/>\nthere is only a nationwide average of 25 percent hospice use.<\/p>\n<p>The Journal of the American Geriatrics Society is published by the American<br \/>\nGeriatrics Society, a 6,000-member premier professional organization of<br \/>\nhealth care providers dedicated to improving the health and well-being<br \/>\nof all older adults.<\/p>\n<\/div><\/div>","protected":false},"excerpt":{"rendered":"<p>As the nationwide trend in where terminally ill people die shifts from hospital to community-based settings, researchers say new clinical skills and health policies are needed for support and services for people and their families. This was the conclusion of an article recently published by Virginia Tilden, D.N.Sc., dean of the UNMC College of Nursing, [&hellip;]<\/p>\n","protected":false},"author":79,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_relevanssi_hide_post":"","_relevanssi_hide_content":"","_relevanssi_pin_for_all":"","_relevanssi_pin_keywords":"","_relevanssi_unpin_keywords":"","_relevanssi_related_keywords":"","_relevanssi_related_include_ids":"","_relevanssi_related_exclude_ids":"","_relevanssi_related_no_append":"","_relevanssi_related_not_related":"","_relevanssi_related_posts":"","_relevanssi_noindex_reason":"","footnotes":""},"categories":[1],"tags":[],"class_list":["post-47229","post","type-post","status-publish","format-standard","hentry","category-uncategorized","department-press-release"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.2 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>End-of-life care moving from hospital to community-setting; 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