How Candid Should Doctors Be with Patients at End of Life?
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The Oakland resident had rushed her 9-year-old to the hospital after a ski accident left him groggy, curled up in the fetal position, and speaking incoherently.\u003c/p>\n\u003cp>Nurses and hospital staff told Lynch that her son needed a CT scan of his head right away, she recalled.\u003c/p>\n\u003cp>While Lynch and her husband were both worried the accident may have caused brain damage, her husband was also weighing risks of the scan's radiation.\u003c/p>\n\u003cp>CT -- or computerized tomography -- combines a series of x-rays for a sophisticated image. In this case, doctors could use the scan to quickly detect internal bleeding or other injuries.\u003c/p>\n\u003cp>It is a powerful tool that has saved lives by discovering small problems before they’ve had the chance to get worse, says Andrew Phelps, a pediatric radiologist at UCSF. But the useful pictures come at a cost: CT scans expose patients to radiation levels that are higher than other types of imaging, like traditional x-rays or MRIs.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>And exposure to high levels of radiation has been linked to cancer.\u003c!--more-->\u003c/p>\n\u003cp>Despite the potential dangers, fewer than half of the parents who bring their children into emergency rooms are aware of the cancer risks from CT scans, according to a \u003ca href=\"http://pediatrics.aappublications.org/content/early/2013/07/02/peds.2013-0378.abstract\">study\u003c/a> published today in the journal Pediatrics.\u003c/p>\n\u003cp>“Clearly there is a gap in the truth about the radiation risks and parental understanding,” said Phelps, who was not involved with the study.\u003c/p>\n\u003cp>Although the potential risk to any individual is small, multiple exposures or high doses of radiation may increase the risk of cancer later in life. What’s more, the developing bodies of children may be even more sensitive to radiation than adults.\u003c/p>\n\u003cp>In the study researchers surveyed parents arriving in Canadian emergency rooms with kids who had suffered head injuries. The researchers found that roughly 90 percent of parents were “very willing/willing” to have a CT scan done on their child.\u003c/p>\n\u003cp>The use of CT scans in diagnosing kids has grown dramatically in the past decades. One previous \u003ca href=\"http://archpedi.jamanetwork.com/article.aspx?articleid=1696279\">study\u003c/a> of U.S. health centers found that the number of scans in kids younger than age 5 had doubled from 1995 to 2005. During the same period, the number of scans tripled for children ages 5-14. Other research of CT scans in emergency rooms, has \u003ca href=\"http://radiology.rsna.org/content/early/2011/03/15/radiol.11101939.full\">found\u003c/a> that the increase was even higher: CT scans in kids increased fivefold from 1995 to 2008, growing from 0.33 to 1.65 million.\u003c/p>\n\u003cp>Since 2007, studies suggest that the use of CT in children has declined. At pediatric hospitals, more doctors are prescribing ultrasounds or MRIs, which are less risky, said Phelps.\u003c/p>\n\u003cp>“But about half of all pediatric imaging occurs in non-pediatric imaging centers,” he said, adding that children who get tests at places that cater to adults may not always be getting “kid-sized” doses.\u003c/p>\n\u003cp>Many physicians credit much of the decrease in the number of CT scans in recent years to the \u003ca href=\"http://www.pedrad.org/associations/5364/ig/\">Image Gently\u003c/a> campaign by the Alliance for Radiation Safety in Pediatric Imaging. The campaign advocates for doing tests only when they are medically necessary and then to use the smallest amount of radiation possible.\u003c/p>\n\u003cp>“The purpose is to educate the pediatricians and the general practitioners before you order a test,” said Bernice Law, a pediatric radiologist at California Pacific Medical Center.\u003c/p>\n\u003cp>The campaign encourages parents to be proactive and ask physicians if a test is medically necessary.\u003c/p>\n\u003cp>In the Canadian study, researchers found that a clear discussion of risks and benefits makes a difference to parents. After these conversations, the number of parents willing to approve a CT scan in their child dropped from 90 to almost 70 percent. In addition, more than 90 percent of all the parents -- including those who still wanted the scan -- wanted to know the risks before the tests were done.\u003c/p>\n\u003cp>Back in the emergency room at Lake Tahoe, Lynch didn’t know a lot about the risks of a CT scan but she did know that something was wrong with her son. “You can see that your kid is in distress,” she said. “Here’s an immediate problem versus a potential future problem.”\u003c/p>\n\u003cp>She and her husband asked the hospital staff about alternatives and ways to minimize the amount of radiation from the CT scan. But she says she felt pressure by some staff to do the test right away. “I will say that we really had to pull that information out of them,” Lynch says.\u003c/p>\n\u003cp>When a more senior doctor arrived in the emergency room, he explained the risks and benefits of the procedure with Lynch and her husband. “The doctor there was fabulous because he gave us a lot of information, and it felt like we were making a very informed decision,” said Lynch.\u003c/p>\n\u003cp>As Lynch was signing the paperwork to consent to the CT scan, her groggy son suddenly began to perk up. He started to uncurl his body and speak normally. In the end, he didn’t get a CT scan.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>But, like many parents in the Canadian study, Lynch said that she appreciated a doctor walking her through all the risks and benefits of the test.\u003c/p>\n\n","blocks":[],"excerpt":"Mary Kathryn Lynch stood next to her young son in a Lake Tahoe emergency room. The Oakland resident had rushed her 9-year-old to the hospital after a ski accident left him groggy, curled up in the fetal position, and speaking incoherently.\r\n\r\nNurses and hospital staff told Lynch that her son needed a CT scan of his head right away, she recalled.\r\n\r\nWhile Lynch and her husband were both worried the accident may have caused brain damage, her husband was also weighing risks of the scan's radiation.","status":"publish","parent":0,"modified":1373515349,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":24,"wordCount":899},"headData":{"title":"CT Scans and Kids: Parents Often Unaware of Risks | KQED","description":"Mary Kathryn Lynch stood next to her young son in a Lake Tahoe emergency room. The Oakland resident had rushed her 9-year-old to the hospital after a ski accident left him groggy, curled up in the fetal position, and speaking incoherently.\r\n\r\nNurses and hospital staff told Lynch that her son needed a CT scan of his head right away, she recalled.\r\n\r\nWhile Lynch and her husband were both worried the accident may have caused brain damage, her husband was also weighing risks of the scan's radiation.","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"Article","headline":"CT Scans and Kids: Parents Often Unaware of Risks","datePublished":"2013-07-08T17:53:35.000Z","dateModified":"2013-07-11T04:02:29.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}},"disqusIdentifier":"13534 http://blogs.kqed.org/stateofhealth/?p=13534","disqusUrl":"https://ww2.kqed.org/stateofhealth/2013/07/08/ct-scans-and-kids-parents-often-unaware-of-risks/","disqusTitle":"CT Scans and Kids: Parents Often Unaware of Risks","path":"/stateofhealth/13534/ct-scans-and-kids-parents-often-unaware-of-risks","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>\u003cimg class=\"alignright size-medium wp-image-10715\" title=\"\" src=\"http://ww2.kqed.org/stateofhealth/wp-content/uploads/sites/27/2013/02/CT-scan-13-of-Clubs_Flickr-300x225.jpg\" alt=\"CT scan 13 of Clubs_Flickr\" width=\"300\" height=\"225\">Mary Kathryn Lynch stood next to her young son in a Lake Tahoe emergency room. The Oakland resident had rushed her 9-year-old to the hospital after a ski accident left him groggy, curled up in the fetal position, and speaking incoherently.\u003c/p>\n\u003cp>Nurses and hospital staff told Lynch that her son needed a CT scan of his head right away, she recalled.\u003c/p>\n\u003cp>While Lynch and her husband were both worried the accident may have caused brain damage, her husband was also weighing risks of the scan's radiation.\u003c/p>\n\u003cp>CT -- or computerized tomography -- combines a series of x-rays for a sophisticated image. In this case, doctors could use the scan to quickly detect internal bleeding or other injuries.\u003c/p>\n\u003cp>It is a powerful tool that has saved lives by discovering small problems before they’ve had the chance to get worse, says Andrew Phelps, a pediatric radiologist at UCSF. But the useful pictures come at a cost: CT scans expose patients to radiation levels that are higher than other types of imaging, like traditional x-rays or MRIs.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>And exposure to high levels of radiation has been linked to cancer.\u003c!--more-->\u003c/p>\n\u003cp>Despite the potential dangers, fewer than half of the parents who bring their children into emergency rooms are aware of the cancer risks from CT scans, according to a \u003ca href=\"http://pediatrics.aappublications.org/content/early/2013/07/02/peds.2013-0378.abstract\">study\u003c/a> published today in the journal Pediatrics.\u003c/p>\n\u003cp>“Clearly there is a gap in the truth about the radiation risks and parental understanding,” said Phelps, who was not involved with the study.\u003c/p>\n\u003cp>Although the potential risk to any individual is small, multiple exposures or high doses of radiation may increase the risk of cancer later in life. What’s more, the developing bodies of children may be even more sensitive to radiation than adults.\u003c/p>\n\u003cp>In the study researchers surveyed parents arriving in Canadian emergency rooms with kids who had suffered head injuries. The researchers found that roughly 90 percent of parents were “very willing/willing” to have a CT scan done on their child.\u003c/p>\n\u003cp>The use of CT scans in diagnosing kids has grown dramatically in the past decades. One previous \u003ca href=\"http://archpedi.jamanetwork.com/article.aspx?articleid=1696279\">study\u003c/a> of U.S. health centers found that the number of scans in kids younger than age 5 had doubled from 1995 to 2005. During the same period, the number of scans tripled for children ages 5-14. Other research of CT scans in emergency rooms, has \u003ca href=\"http://radiology.rsna.org/content/early/2011/03/15/radiol.11101939.full\">found\u003c/a> that the increase was even higher: CT scans in kids increased fivefold from 1995 to 2008, growing from 0.33 to 1.65 million.\u003c/p>\n\u003cp>Since 2007, studies suggest that the use of CT in children has declined. At pediatric hospitals, more doctors are prescribing ultrasounds or MRIs, which are less risky, said Phelps.\u003c/p>\n\u003cp>“But about half of all pediatric imaging occurs in non-pediatric imaging centers,” he said, adding that children who get tests at places that cater to adults may not always be getting “kid-sized” doses.\u003c/p>\n\u003cp>Many physicians credit much of the decrease in the number of CT scans in recent years to the \u003ca href=\"http://www.pedrad.org/associations/5364/ig/\">Image Gently\u003c/a> campaign by the Alliance for Radiation Safety in Pediatric Imaging. The campaign advocates for doing tests only when they are medically necessary and then to use the smallest amount of radiation possible.\u003c/p>\n\u003cp>“The purpose is to educate the pediatricians and the general practitioners before you order a test,” said Bernice Law, a pediatric radiologist at California Pacific Medical Center.\u003c/p>\n\u003cp>The campaign encourages parents to be proactive and ask physicians if a test is medically necessary.\u003c/p>\n\u003cp>In the Canadian study, researchers found that a clear discussion of risks and benefits makes a difference to parents. After these conversations, the number of parents willing to approve a CT scan in their child dropped from 90 to almost 70 percent. In addition, more than 90 percent of all the parents -- including those who still wanted the scan -- wanted to know the risks before the tests were done.\u003c/p>\n\u003cp>Back in the emergency room at Lake Tahoe, Lynch didn’t know a lot about the risks of a CT scan but she did know that something was wrong with her son. “You can see that your kid is in distress,” she said. “Here’s an immediate problem versus a potential future problem.”\u003c/p>\n\u003cp>She and her husband asked the hospital staff about alternatives and ways to minimize the amount of radiation from the CT scan. But she says she felt pressure by some staff to do the test right away. “I will say that we really had to pull that information out of them,” Lynch says.\u003c/p>\n\u003cp>When a more senior doctor arrived in the emergency room, he explained the risks and benefits of the procedure with Lynch and her husband. “The doctor there was fabulous because he gave us a lot of information, and it felt like we were making a very informed decision,” said Lynch.\u003c/p>\n\u003cp>As Lynch was signing the paperwork to consent to the CT scan, her groggy son suddenly began to perk up. He started to uncurl his body and speak normally. In the end, he didn’t get a CT scan.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>But, like many parents in the Canadian study, Lynch said that she appreciated a doctor walking her through all the risks and benefits of the test.\u003c/p>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/stateofhealth/13534/ct-scans-and-kids-parents-often-unaware-of-risks","authors":["1462"],"categories":["stateofhealth_13"],"tags":["stateofhealth_96","stateofhealth_77","stateofhealth_461"],"featImg":"stateofhealth_10715","label":"stateofhealth"},"stateofhealth_3177":{"type":"posts","id":"stateofhealth_3177","meta":{"index":"posts_1591205157","site":"stateofhealth","id":"3177","score":null,"sort":[1329847906000]},"guestAuthors":[],"slug":"aging-as-a-part-of-life-not-a-disease-state","title":"Aging is a Part of Life, Not a Disease","publishDate":1329847906,"format":"aside","headTitle":"State of Health | KQED News","labelTerm":{"site":"stateofhealth"},"content":"\u003cfigure id=\"attachment_3185\" class=\"wp-caption alignleft\" style=\"max-width: 300px\">\u003ca href=\"http://ww2.kqed.org/stateofhealth/wp-content/uploads/sites/27/2012/02/Aging_Healthy_Patrick_Flickr_02212012.jpg\">\u003cimg class=\"size-medium wp-image-3185\" title=\"(Patrick: Flickr)\" src=\"http://ww2.kqed.org/stateofhealth/wp-content/uploads/sites/27/2012/02/Aging_Healthy_Patrick_Flickr_02212012-300x240.jpg\" alt=\"(Patrick: Flickr)\" width=\"300\" height=\"240\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">(Patrick: Flickr)\u003c/figcaption>\u003c/figure>\n\u003cp>Researchers and health advocates have long been encouraging people to make their end-of-life wishes known. While most people say they want to die a natural death at home, \u003ca title=\"http://ww2.kqed.org/stateofhealth/2012/02/14/disparity-between-preferences-and-actions-in-end-of-life-care/\" href=\"http://ww2.kqed.org/stateofhealth/2012/02/14/disparity-between-preferences-and-actions-in-end-of-life-care/\" target=\"_blank\">few actually put those wishes into writing\u003c/a>.\u003c/p>\n\u003cp>But at least equally important is thinking about how to enjoy quality of life while aging. A new book seeks to help people address these questions. \u003ca title=\"http://www.kaiserhealthnews.org/Stories/2012/February/21/nortin-hadler-q-and-a.aspx\" href=\"http://www.kaiserhealthnews.org/Stories/2012/February/21/nortin-hadler-q-and-a.aspx\" target=\"_blank\">Kaiser Health News\u003c/a> interviewed \u003ca title=\"http://tarc.med.unc.edu/facultymem.php?id=25\" href=\"http://tarc.med.unc.edu/facultymem.php?id=25\" target=\"_blank\">Nortin Hadler\u003c/a>, the author of “\u003ca title=\"http://uncpress.unc.edu/books/T-9195.html\" href=\"http://uncpress.unc.edu/books/T-9195.html\" target=\"_blank\">Rethinking Aging\u003c/a>.”\u003c/p>\n\u003cp>I especially like the book's tagline: \"Growing Old and Living Well in an Overtreated Society.\" Hadler is concerned about the medicalization of aging. “We’re taught and marketed that all changes in appearance and in function in older people are forms of disease that demand treatment,\" he told Kaiser Health News. \"But often, that isn’t true. Much that is termed a disease is a normal aspect of this time of life and needs to be viewed as such.”\u003c!--more-->\u003c/p>\n\u003cp>The Kaiser Health News interview goes on:\u003c/p>\n\u003cblockquote>\u003cp>\u003cstrong>Q: You talk a lot about the importance of older people making informed medical decisions.\u003c/strong>\u003c/p>\n\u003cp>A: For the first time in the history of medicine, we have a tremendous amount of information about efficacy: what makes sense to do medically and what doesn’t.\u003c/p>\n\u003cp>What I want to teach people is that it's perfectly appropriate for patients to ask their doctors, \"How certain are you that what you are offering me will produce meaningful benefits? What does the evidence show about the possibility of harm?\"\u003c/p>\n\u003cp>\u003cstrong>Q: Can you suggest some other questions people might ask?\u003c/strong>\u003c/p>\n\u003cp>A: People should want to know the likelihood that death will be postponed by doing something. What is the likelihood of the same outcome, or close to the same, if one doesn’t have the treatment? Out of every 100 people, how many are helped by this intervention?\u003c/p>\u003c/blockquote>\n\u003cp>This last point--how many are helped by an intervention--is particularly relevant. The doctor is referring to \u003ca title=\"http://ww2.kqed.org/stateofhealth/2011/11/08/5-things-to-know-before-starting-a-new-drug/\" href=\"http://ww2.kqed.org/stateofhealth/2011/11/08/5-things-to-know-before-starting-a-new-drug/\" target=\"_blank\">relative risk\u003c/a>. You might hear a drug ad claim that “twice as many people” avoided a heart attack, stroke or some other dire health consequence. But if the likelihood of that dire thing happening to you was only one in 100 to begin with, do you really want to try an intervention and risk the side effects that go along with it?\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>In the interview, Hadler also puts the issue of informed medical decision making into context for people with a serious, life threatening illness:\u003c/p>\n\u003cblockquote>\u003cp>You want to know whether a proposed intervention will be effective given your context: your age, your degree of frailty, other illnesses that you have. How much benefit will you get: an extra three months, an extra year? If it’s a year, what kind of year will it be? Will I feel absolutely awful? What will the quality of my life be?\u003c/p>\n\u003cp>I once took care of a very, very famous physician. He was an octogenarian with heart disease, but he was very active and sharp as a tack. Well, he found out that in his belly was an expanding aortic aneurism – a surgically treatable potential killer. He and I had multiple conversations about what to do and each time he would say, “I’ll be damned if I let them do surgery on me.” He knew there was a high risk of surgical mortality because of his age and his frailty. He knew that urological complications were almost guaranteed and cardiac complications were probable. He didn’t want to try to live through that. And he didn’t have to because he died of a stroke, unrelated to the aneurism, several years later.\u003c/p>\u003c/blockquote>\n\u003cp>\u003c/p>\n\u003cp>You can read the entire interview \u003ca title=\"http://www.kaiserhealthnews.org/Stories/2012/February/21/nortin-hadler-q-and-a.aspx\" href=\"http://www.kaiserhealthnews.org/Stories/2012/February/21/nortin-hadler-q-and-a.aspx\" target=\"_blank\">here\u003c/a>.\u003c/p>\n\n","blocks":[],"excerpt":"Researchers and health advocates have long been encouraging people to make their end-of-life wishes known. While most people say they want to die a natural death at home, few actually put those wishes into writing.\r\n\r\nBut at least equally important is thinking about how to enjoy quality of life while aging. A new book seeks to help people address these questions. Kaiser Health News interviewed Nortin Hadler, the author of “Rethinking Aging.” I especially like the book's tagline: \"Growing Old and Living Well in an Overtreated Society.\"","status":"publish","parent":0,"modified":1330040646,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":16,"wordCount":633},"headData":{"title":"Aging is a Part of Life, Not a Disease | KQED","description":"Researchers and health advocates have long been encouraging people to make their end-of-life wishes known. While most people say they want to die a natural death at home, few actually put those wishes into writing.\r\n\r\nBut at least equally important is thinking about how to enjoy quality of life while aging. A new book seeks to help people address these questions. Kaiser Health News interviewed Nortin Hadler, the author of “Rethinking Aging.” I especially like the book's tagline: "Growing Old and Living Well in an Overtreated Society."","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"Article","headline":"Aging is a Part of Life, Not a Disease","datePublished":"2012-02-21T18:11:46.000Z","dateModified":"2012-02-23T23:44:06.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}},"disqusIdentifier":"3177 http://blogs.kqed.org/stateofhealth/?p=3177","disqusUrl":"https://ww2.kqed.org/stateofhealth/2012/02/21/aging-as-a-part-of-life-not-a-disease-state/","disqusTitle":"Aging is a Part of Life, Not a Disease","path":"/stateofhealth/3177/aging-as-a-part-of-life-not-a-disease-state","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cfigure id=\"attachment_3185\" class=\"wp-caption alignleft\" style=\"max-width: 300px\">\u003ca href=\"http://ww2.kqed.org/stateofhealth/wp-content/uploads/sites/27/2012/02/Aging_Healthy_Patrick_Flickr_02212012.jpg\">\u003cimg class=\"size-medium wp-image-3185\" title=\"(Patrick: Flickr)\" src=\"http://ww2.kqed.org/stateofhealth/wp-content/uploads/sites/27/2012/02/Aging_Healthy_Patrick_Flickr_02212012-300x240.jpg\" alt=\"(Patrick: Flickr)\" width=\"300\" height=\"240\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">(Patrick: Flickr)\u003c/figcaption>\u003c/figure>\n\u003cp>Researchers and health advocates have long been encouraging people to make their end-of-life wishes known. While most people say they want to die a natural death at home, \u003ca title=\"http://ww2.kqed.org/stateofhealth/2012/02/14/disparity-between-preferences-and-actions-in-end-of-life-care/\" href=\"http://ww2.kqed.org/stateofhealth/2012/02/14/disparity-between-preferences-and-actions-in-end-of-life-care/\" target=\"_blank\">few actually put those wishes into writing\u003c/a>.\u003c/p>\n\u003cp>But at least equally important is thinking about how to enjoy quality of life while aging. A new book seeks to help people address these questions. \u003ca title=\"http://www.kaiserhealthnews.org/Stories/2012/February/21/nortin-hadler-q-and-a.aspx\" href=\"http://www.kaiserhealthnews.org/Stories/2012/February/21/nortin-hadler-q-and-a.aspx\" target=\"_blank\">Kaiser Health News\u003c/a> interviewed \u003ca title=\"http://tarc.med.unc.edu/facultymem.php?id=25\" href=\"http://tarc.med.unc.edu/facultymem.php?id=25\" target=\"_blank\">Nortin Hadler\u003c/a>, the author of “\u003ca title=\"http://uncpress.unc.edu/books/T-9195.html\" href=\"http://uncpress.unc.edu/books/T-9195.html\" target=\"_blank\">Rethinking Aging\u003c/a>.”\u003c/p>\n\u003cp>I especially like the book's tagline: \"Growing Old and Living Well in an Overtreated Society.\" Hadler is concerned about the medicalization of aging. “We’re taught and marketed that all changes in appearance and in function in older people are forms of disease that demand treatment,\" he told Kaiser Health News. \"But often, that isn’t true. Much that is termed a disease is a normal aspect of this time of life and needs to be viewed as such.”\u003c!--more-->\u003c/p>\n\u003cp>The Kaiser Health News interview goes on:\u003c/p>\n\u003cblockquote>\u003cp>\u003cstrong>Q: You talk a lot about the importance of older people making informed medical decisions.\u003c/strong>\u003c/p>\n\u003cp>A: For the first time in the history of medicine, we have a tremendous amount of information about efficacy: what makes sense to do medically and what doesn’t.\u003c/p>\n\u003cp>What I want to teach people is that it's perfectly appropriate for patients to ask their doctors, \"How certain are you that what you are offering me will produce meaningful benefits? What does the evidence show about the possibility of harm?\"\u003c/p>\n\u003cp>\u003cstrong>Q: Can you suggest some other questions people might ask?\u003c/strong>\u003c/p>\n\u003cp>A: People should want to know the likelihood that death will be postponed by doing something. What is the likelihood of the same outcome, or close to the same, if one doesn’t have the treatment? Out of every 100 people, how many are helped by this intervention?\u003c/p>\u003c/blockquote>\n\u003cp>This last point--how many are helped by an intervention--is particularly relevant. The doctor is referring to \u003ca title=\"http://ww2.kqed.org/stateofhealth/2011/11/08/5-things-to-know-before-starting-a-new-drug/\" href=\"http://ww2.kqed.org/stateofhealth/2011/11/08/5-things-to-know-before-starting-a-new-drug/\" target=\"_blank\">relative risk\u003c/a>. You might hear a drug ad claim that “twice as many people” avoided a heart attack, stroke or some other dire health consequence. But if the likelihood of that dire thing happening to you was only one in 100 to begin with, do you really want to try an intervention and risk the side effects that go along with it?\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>In the interview, Hadler also puts the issue of informed medical decision making into context for people with a serious, life threatening illness:\u003c/p>\n\u003cblockquote>\u003cp>You want to know whether a proposed intervention will be effective given your context: your age, your degree of frailty, other illnesses that you have. How much benefit will you get: an extra three months, an extra year? If it’s a year, what kind of year will it be? Will I feel absolutely awful? What will the quality of my life be?\u003c/p>\n\u003cp>I once took care of a very, very famous physician. He was an octogenarian with heart disease, but he was very active and sharp as a tack. Well, he found out that in his belly was an expanding aortic aneurism – a surgically treatable potential killer. He and I had multiple conversations about what to do and each time he would say, “I’ll be damned if I let them do surgery on me.” He knew there was a high risk of surgical mortality because of his age and his frailty. He knew that urological complications were almost guaranteed and cardiac complications were probable. He didn’t want to try to live through that. And he didn’t have to because he died of a stroke, unrelated to the aneurism, several years later.\u003c/p>\u003c/blockquote>\n\u003cp>\u003c/p>\n\u003cp>You can read the entire interview \u003ca title=\"http://www.kaiserhealthnews.org/Stories/2012/February/21/nortin-hadler-q-and-a.aspx\" href=\"http://www.kaiserhealthnews.org/Stories/2012/February/21/nortin-hadler-q-and-a.aspx\" target=\"_blank\">here\u003c/a>.\u003c/p>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/stateofhealth/3177/aging-as-a-part-of-life-not-a-disease-state","authors":["240"],"categories":["stateofhealth_14"],"tags":["stateofhealth_186","stateofhealth_77"],"featImg":"stateofhealth_3185","label":"stateofhealth"},"stateofhealth_1971":{"type":"posts","id":"stateofhealth_1971","meta":{"index":"posts_1591205157","site":"stateofhealth","id":"1971","score":null,"sort":[1326322034000]},"guestAuthors":[],"slug":"getting-to-better-patient-centered-healthcare","title":"Getting to Better \"Patient-Centered\" Healthcare","publishDate":1326322034,"format":"aside","headTitle":"State of Health | KQED News","labelTerm":{"site":"stateofhealth"},"content":"\u003cp>By Shefali S. Kulkarni, \u003ca title=\"http://www.kaiserhealthnews.org/stories/2012/january/09/pcori-q-and-a.aspx?referrer=search\" href=\"http://www.kaiserhealthnews.org/stories/2012/january/09/pcori-q-and-a.aspx?referrer=search\" target=\"_blank\">Kaiser Health News\u003c/a>\u003c/p>\n\u003cfigure id=\"attachment_1981\" class=\"wp-caption alignleft\" style=\"max-width: 300px\">\u003ca href=\"http://ww2.kqed.org/stateofhealth/wp-content/uploads/sites/27/2012/01/PCORI_01112012_Image_USNavy.jpg\">\u003cimg class=\"size-medium wp-image-1981\" title=\"(Photo: U.S. Navy)\" src=\"http://ww2.kqed.org/stateofhealth/wp-content/uploads/sites/27/2012/01/PCORI_01112012_Image_USNavy-300x199.jpg\" alt=\"(Photo: U.S. Navy)\" width=\"300\" height=\"199\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">(Photo: U.S. Navy)\u003c/figcaption>\u003c/figure>\n\u003cp>PCORI is not exactly a household name, but if Dr. Anne Beal has her way, it will be soon. The acronym stands for \u003ca title=\"http://www.pcori.org/\" href=\"http://www.pcori.org/\" target=\"_blank\">Patient Centered Outcomes Research Institute\u003c/a>—a group of doctors, researchers, statisticians and patient advocates who will commission evidence-based research for the health care system.\u003c/p>\n\u003cp>The key here is “patient-centered.” Beal says the goal is to provide easy-to-understand information to patients so they can make the most informed health care decisions.\u003c/p>\n\u003cp>PCORI is yet another part of health care reform that people may not know much about. But while it was created via the Affordable Care Act, but it is an independent, non-profit organization.\u003c!--more-->Beal, the No. 2 at the new institute comes to PCORI after leading the \u003ca title=\"http://www.aetna-foundation.org/foundation/index.html\" href=\"http://www.aetna-foundation.org/foundation/index.html\" target=\"_blank\">Aetna Foundation\u003c/a>, the philanthropic arm of Aetna Inc. There, she emphasized three areas: preventing obesity, racial and ethnic health care equity, and integrated care. Beal says she’ll carry that experience into her new role: \"Health equity is going to be one of the priority areas within [PCORI’s] research agenda.\"\u003c/p>\n\u003cp>In December, hundreds of project proposals flooded the PCORI office vying for funds. By March, PCORI staff will have picked about 40 projects to fund with $26 million in grants over two years. Those will help set the tone for PCORI’s standards of research.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>KHN’s Shefali S. Kulkarni spoke with Beal about this the new agency. Here are edited excerpts:\u003c/p>\n\u003cp>\u003cstrong>Q\u003c/strong>: Can you give an example of how you envision people using the kind of research that PCORI will fund?\u003c/p>\n\u003cp>\u003cstrong>A\u003c/strong>: Let’s say someone is trying to decide if they should have Procedure A versus Procedure B. You give them all this information, but what the patient is saying is, \"Well, what’s really important for me is that I’m very afraid of pain. What procedure is going to be the lowest pain option that still gives me the benefits that I need?\" Somebody else is going to be very interested in what will give them the longest life. Somebody else may say, \"Well, what’s really important to me is whatever procedures I have, I am a working parent and I can’t really afford a lot of time off from work, so what procedure is really going to take care of this condition, but get me back to work as quickly as I can?\"\u003c/p>\n\u003cp>So, then we [at PCORI] are trying to think of the different options that are available to us, not only looking at research that says, \"If you do this cardiac procedure versus this cardiac procedure, here's what the outcome is.\" But now: here’s what the outcome is in terms of pain, here’s what the outcome is in terms of days off from work, here’s what the outcome is in terms of longevity. So then you, as the patient, have the information to make that comparison and make really a tailored decision that meets your needs.\u003c/p>\n\u003cp>\u003cstrong>Q\u003c/strong>: Where does PCORI fit into the health care law?\u003c/p>\n\u003cp>\u003cstrong>A\u003c/strong>: What PCORI is trying to do is address where some people said health reform fell short — so you have access, but access to what? Now that we [will] have, as a result of the Affordable Care Act, near universal access to health care, we need to really turn our attention to make sure the health care system is really meeting the needs of every patient. And in some ways that is a very grand view, but I think it’s quite necessary to really take this sort of vision of what health care should be, but then make it mean something to the average patient.\u003c/p>\n\u003cp>\u003cstrong>Q\u003c/strong>: Can you give an example of that?\u003c/p>\n\u003cp>\u003cstrong>A\u003c/strong>: Well, from a personal perspective, in the last few years my father's been sick. So I come to Washington, I have these conversations...and we have these sort of very grand ideas of what health care should be. Then I go home and I’m at my father’s bedside, and I see the reality of what health care is. Because of all this, I think the patient experience is often fragmented and not well coordinated. There is a lot of ambiguity in health care, both on the part of providers and patients, therefore patients don’t necessarily know what the best choices available to them are. When really thinking about a patient-centered research enterprise, we have to think about if we present information that is a trusted source that people can go to and that really addresses their needs and concerns. [It should be] information and knowledge that was created from the patients' perspective. For me, the promise of PCORI is really taking these highfalutin conversations and making them real, so that at the end of the day — you know next Thanksgiving, when I’m telling my family I work for PCORI — they know what that means.\u003c/p>\n\u003cp>\u003cstrong>Q\u003c/strong>: What will the organizational structure of PCORI be?\u003c/p>\n\u003cp>\u003cstrong>A\u003c/strong>: We take it very seriously when we say that the patient has to be engaged at every step of the process. So, for example, we have patient representation on our board — every grant review that we are going to have is going to have at least three patient representatives to make sure that not only is [the proposal] an interesting question, but is it a meaningful question to the patient? Even as we’re defining patient-centered outcomes research, we are engaging focus groups all around the country. Even as we are developing our research agenda, we’re looking for patient input. I think that is something that is really going to become part of our DNA, and we’re already seeing it manifest right now.\u003c/p>\n\u003cp>\u003cstrong>Q\u003c/strong>: Health disparities, obesity and health care delivery systems were your main focus at your last job as the president of the Aetna Foundation. How is PCORI going to address these issues?\u003c/p>\n\u003cp>\u003cstrong>A\u003c/strong>: A lot of what drives health disparities is in fact differences in health systems’ function. I think one of the most exciting promises of PCORI is that included in our thinking about comparative effectiveness is that we want to compare systems of care. So being able to look at the role of the health system in achieving high quality care is important, as well as being able to do it in underserved settings, or large minority-serving settings. It really is going to be about thinking, in this whole continuum, of what are the questions, how do we execute the research and then, specifically, who the population is it that we try to go for. These are some of our preliminary thoughts, but in our research agenda, we have different priority areas and health equities are certainly one of them. We are really diving deep into them now.\u003c/p>\n\u003cp>\u003cstrong>Q\u003c/strong>: Where do you see PCORI in the next 10 years?\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>\u003cstrong>A\u003c/strong>: It's actually pretty simple: we are funded through 2019 and what I would like to see for PCORI is that our contribution to improving patient care and the patient experience is so significant that patients will say, \"It can't go away.\" What I really envision is that PCORI becomes a go-to place for patients and, frankly, even for their providers. We are willing to be really innovative and we're willing to be very open. So, whether it’s creating new apps, or thinking about a webpage or a YouTube channel, nothing is off the table. Obviously, doing our work and publishing it in the New England Journal of Medicine is not the way to get to patients, so we are going to have to think very creatively about how [to] make [our] work relevant for patients.\u003c/p>\n\n","blocks":[],"excerpt":"PCORI is not exactly a household name, but if Dr. Anne Beal has her way, it will be soon. The acronym stands for Patient Centered Outcomes Research Institute—a group of doctors, researchers, statisticians and patient advocates who will commission evidence-based research for the health care system.\r\n\r\nThe key here is “patient-centered.” Beal says the goal is to provide easy-to-understand information to patients so they can make the most informed health care decisions.\r\n","status":"publish","parent":0,"modified":1326322034,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":21,"wordCount":1338},"headData":{"title":"Getting to Better \"Patient-Centered\" Healthcare | KQED","description":"PCORI is not exactly a household name, but if Dr. Anne Beal has her way, it will be soon. The acronym stands for Patient Centered Outcomes Research Institute—a group of doctors, researchers, statisticians and patient advocates who will commission evidence-based research for the health care system.\r\n\r\nThe key here is “patient-centered.” Beal says the goal is to provide easy-to-understand information to patients so they can make the most informed health care decisions.\r\n","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"Article","headline":"Getting to Better \"Patient-Centered\" Healthcare","datePublished":"2012-01-11T22:47:14.000Z","dateModified":"2012-01-11T22:47:14.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}},"disqusIdentifier":"1971 http://blogs.kqed.org/stateofhealth/?p=1971","disqusUrl":"https://ww2.kqed.org/stateofhealth/2012/01/11/getting-to-better-patient-centered-healthcare/","disqusTitle":"Getting to Better \"Patient-Centered\" Healthcare","path":"/stateofhealth/1971/getting-to-better-patient-centered-healthcare","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>By Shefali S. Kulkarni, \u003ca title=\"http://www.kaiserhealthnews.org/stories/2012/january/09/pcori-q-and-a.aspx?referrer=search\" href=\"http://www.kaiserhealthnews.org/stories/2012/january/09/pcori-q-and-a.aspx?referrer=search\" target=\"_blank\">Kaiser Health News\u003c/a>\u003c/p>\n\u003cfigure id=\"attachment_1981\" class=\"wp-caption alignleft\" style=\"max-width: 300px\">\u003ca href=\"http://ww2.kqed.org/stateofhealth/wp-content/uploads/sites/27/2012/01/PCORI_01112012_Image_USNavy.jpg\">\u003cimg class=\"size-medium wp-image-1981\" title=\"(Photo: U.S. Navy)\" src=\"http://ww2.kqed.org/stateofhealth/wp-content/uploads/sites/27/2012/01/PCORI_01112012_Image_USNavy-300x199.jpg\" alt=\"(Photo: U.S. Navy)\" width=\"300\" height=\"199\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">(Photo: U.S. Navy)\u003c/figcaption>\u003c/figure>\n\u003cp>PCORI is not exactly a household name, but if Dr. Anne Beal has her way, it will be soon. The acronym stands for \u003ca title=\"http://www.pcori.org/\" href=\"http://www.pcori.org/\" target=\"_blank\">Patient Centered Outcomes Research Institute\u003c/a>—a group of doctors, researchers, statisticians and patient advocates who will commission evidence-based research for the health care system.\u003c/p>\n\u003cp>The key here is “patient-centered.” Beal says the goal is to provide easy-to-understand information to patients so they can make the most informed health care decisions.\u003c/p>\n\u003cp>PCORI is yet another part of health care reform that people may not know much about. But while it was created via the Affordable Care Act, but it is an independent, non-profit organization.\u003c!--more-->Beal, the No. 2 at the new institute comes to PCORI after leading the \u003ca title=\"http://www.aetna-foundation.org/foundation/index.html\" href=\"http://www.aetna-foundation.org/foundation/index.html\" target=\"_blank\">Aetna Foundation\u003c/a>, the philanthropic arm of Aetna Inc. There, she emphasized three areas: preventing obesity, racial and ethnic health care equity, and integrated care. Beal says she’ll carry that experience into her new role: \"Health equity is going to be one of the priority areas within [PCORI’s] research agenda.\"\u003c/p>\n\u003cp>In December, hundreds of project proposals flooded the PCORI office vying for funds. By March, PCORI staff will have picked about 40 projects to fund with $26 million in grants over two years. Those will help set the tone for PCORI’s standards of research.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>KHN’s Shefali S. Kulkarni spoke with Beal about this the new agency. Here are edited excerpts:\u003c/p>\n\u003cp>\u003cstrong>Q\u003c/strong>: Can you give an example of how you envision people using the kind of research that PCORI will fund?\u003c/p>\n\u003cp>\u003cstrong>A\u003c/strong>: Let’s say someone is trying to decide if they should have Procedure A versus Procedure B. You give them all this information, but what the patient is saying is, \"Well, what’s really important for me is that I’m very afraid of pain. What procedure is going to be the lowest pain option that still gives me the benefits that I need?\" Somebody else is going to be very interested in what will give them the longest life. Somebody else may say, \"Well, what’s really important to me is whatever procedures I have, I am a working parent and I can’t really afford a lot of time off from work, so what procedure is really going to take care of this condition, but get me back to work as quickly as I can?\"\u003c/p>\n\u003cp>So, then we [at PCORI] are trying to think of the different options that are available to us, not only looking at research that says, \"If you do this cardiac procedure versus this cardiac procedure, here's what the outcome is.\" But now: here’s what the outcome is in terms of pain, here’s what the outcome is in terms of days off from work, here’s what the outcome is in terms of longevity. So then you, as the patient, have the information to make that comparison and make really a tailored decision that meets your needs.\u003c/p>\n\u003cp>\u003cstrong>Q\u003c/strong>: Where does PCORI fit into the health care law?\u003c/p>\n\u003cp>\u003cstrong>A\u003c/strong>: What PCORI is trying to do is address where some people said health reform fell short — so you have access, but access to what? Now that we [will] have, as a result of the Affordable Care Act, near universal access to health care, we need to really turn our attention to make sure the health care system is really meeting the needs of every patient. And in some ways that is a very grand view, but I think it’s quite necessary to really take this sort of vision of what health care should be, but then make it mean something to the average patient.\u003c/p>\n\u003cp>\u003cstrong>Q\u003c/strong>: Can you give an example of that?\u003c/p>\n\u003cp>\u003cstrong>A\u003c/strong>: Well, from a personal perspective, in the last few years my father's been sick. So I come to Washington, I have these conversations...and we have these sort of very grand ideas of what health care should be. Then I go home and I’m at my father’s bedside, and I see the reality of what health care is. Because of all this, I think the patient experience is often fragmented and not well coordinated. There is a lot of ambiguity in health care, both on the part of providers and patients, therefore patients don’t necessarily know what the best choices available to them are. When really thinking about a patient-centered research enterprise, we have to think about if we present information that is a trusted source that people can go to and that really addresses their needs and concerns. [It should be] information and knowledge that was created from the patients' perspective. For me, the promise of PCORI is really taking these highfalutin conversations and making them real, so that at the end of the day — you know next Thanksgiving, when I’m telling my family I work for PCORI — they know what that means.\u003c/p>\n\u003cp>\u003cstrong>Q\u003c/strong>: What will the organizational structure of PCORI be?\u003c/p>\n\u003cp>\u003cstrong>A\u003c/strong>: We take it very seriously when we say that the patient has to be engaged at every step of the process. So, for example, we have patient representation on our board — every grant review that we are going to have is going to have at least three patient representatives to make sure that not only is [the proposal] an interesting question, but is it a meaningful question to the patient? Even as we’re defining patient-centered outcomes research, we are engaging focus groups all around the country. Even as we are developing our research agenda, we’re looking for patient input. I think that is something that is really going to become part of our DNA, and we’re already seeing it manifest right now.\u003c/p>\n\u003cp>\u003cstrong>Q\u003c/strong>: Health disparities, obesity and health care delivery systems were your main focus at your last job as the president of the Aetna Foundation. How is PCORI going to address these issues?\u003c/p>\n\u003cp>\u003cstrong>A\u003c/strong>: A lot of what drives health disparities is in fact differences in health systems’ function. I think one of the most exciting promises of PCORI is that included in our thinking about comparative effectiveness is that we want to compare systems of care. So being able to look at the role of the health system in achieving high quality care is important, as well as being able to do it in underserved settings, or large minority-serving settings. It really is going to be about thinking, in this whole continuum, of what are the questions, how do we execute the research and then, specifically, who the population is it that we try to go for. These are some of our preliminary thoughts, but in our research agenda, we have different priority areas and health equities are certainly one of them. We are really diving deep into them now.\u003c/p>\n\u003cp>\u003cstrong>Q\u003c/strong>: Where do you see PCORI in the next 10 years?\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"floatright"},"numeric":["floatright"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\u003cstrong>A\u003c/strong>: It's actually pretty simple: we are funded through 2019 and what I would like to see for PCORI is that our contribution to improving patient care and the patient experience is so significant that patients will say, \"It can't go away.\" What I really envision is that PCORI becomes a go-to place for patients and, frankly, even for their providers. We are willing to be really innovative and we're willing to be very open. So, whether it’s creating new apps, or thinking about a webpage or a YouTube channel, nothing is off the table. Obviously, doing our work and publishing it in the New England Journal of Medicine is not the way to get to patients, so we are going to have to think very creatively about how [to] make [our] work relevant for patients.\u003c/p>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/stateofhealth/1971/getting-to-better-patient-centered-healthcare","authors":["240"],"categories":["stateofhealth_14"],"tags":["stateofhealth_77"],"label":"stateofhealth"},"stateofhealth_1085":{"type":"posts","id":"stateofhealth_1085","meta":{"index":"posts_1591205157","site":"stateofhealth","id":"1085","score":null,"sort":[1323394004000]},"guestAuthors":[],"slug":"how-much-do-elderly-patients-want-to-know-and-should-doctors-tell-them","title":"How Candid Should Doctors Be with Patients at End of Life?","publishDate":1323394004,"format":"aside","headTitle":"State of Health | KQED News","labelTerm":{"site":"stateofhealth"},"content":"\u003cfigure id=\"attachment_1099\" class=\"wp-caption alignleft\" style=\"max-width: 300px\">\u003ca href=\"http://ww2.kqed.org/stateofhealth/wp-content/uploads/sites/27/2011/12/Hands_RyanWilcox_Flickr_12082011.jpg\">\u003cimg class=\"size-medium wp-image-1099\" title=\"(Ryan Wilcox: Flickr)\" src=\"http://ww2.kqed.org/stateofhealth/wp-content/uploads/sites/27/2011/12/Hands_RyanWilcox_Flickr_12082011-300x200.jpg\" alt=\"(Ryan Wilcox: Flickr)\" width=\"300\" height=\"200\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">(Ryan Wilcox: Flickr)\u003c/figcaption>\u003c/figure>\n\u003cp>Not so long ago, it was common for doctors to keep sick patients, even terminally ill patients, in the dark about their prognosis. Today, many patients are actively involved in managing their illnesses, in partnership with their doctors. Indeed, one of the tabs on this blog is \"You're the Boss.\"\u003c/p>\n\u003cp>But a \"Perspective\" in today's\u003cem> \u003ca title=\"http://www.nejm.org/doi/full/10.1056/NEJMp1109990?query=TOC\" href=\"http://www.nejm.org/doi/full/10.1056/NEJMp1109990?query=TOC\" target=\"_blank\">New England Journal of Medicine\u003c/a>\u003c/em> says doctors have shied away from explicit conversations about prognosis with a group of patients they should engage--the very elderly. The writers recommend doctors discuss \"overall prognosis\" with elderly patients who have a life expectancy of less than 10 years or who are 85.\u003c/p>\n\u003cp>\u003c!--more-->If you're thinking that conversation sounds a bit, well, \u003cem>unpleasant\u003c/em>, research shows that a majority of elderly patients want to have the information. In one study, 55 percent of frail elderly patients whose doctor had never discussed their prognosis wanted to. In a second study, albeit a small one with 60 people including disabled African-American, Chinese-American, Latino and white patients, 65 percent said they would want to be told if they had less than five years to live.\u003c/p>\n\u003cp>The recommendations come from a team of doctors in the \u003ca title=\"http://geriatrics.medicine.ucsf.edu/\" href=\"http://geriatrics.medicine.ucsf.edu/\" target=\"_blank\">Division of Geriatrics at UC San Francisco\u003c/a> and the \u003ca title=\"http://www.sanfrancisco.va.gov/\" href=\"http://www.sanfrancisco.va.gov/\" target=\"_blank\">San Francisco VA Medical Center.\u003c/a> \"People want to know not just for medical reasons,\" said Dr. Alexander Smith of the San Francisco VA, one of the authors, \"but because they want to make life choices, put financial affairs in order, arrange for a durable power of attorney for health care and think about longterm care.\"\u003c/p>\n\u003cp>Smith is a palliative care physician, someone who is trained in talking with patients about challenging medical news. He acknowledged that it is a skill to have these conversations. But for many elderly patients, information about lifespan is not a surprise. \"In our experience, many older adults are aware that they are in life's final chapter, so such a conversation would not come as a shock to them. As physicians we have an obligation to give them honest information.\"\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>Of particular concern is the risk of many medical interventions, including screening tests. The writers cite a specific example of colonoscopy, an invasive procedure where the benefits may not be seen for years, benefits the patient may not live to see.\u003c/p>\n\u003cp>\"This is really about empowering patients,\" Smith said, \"giving patients information so they can make informed choices.\"\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>Still, doctors must tread carefully. While a majority of surveyed patients did want prognostic information, a sizable minority did not. Doctors should not force the discussion, the writers say.\u003c/p>\n\n","blocks":[],"excerpt":"Not so long ago in American healthcare, it was not uncommon for doctors to keep sick patients, even terminally ill patients, in the dark about their prognosis. But, today, many patients are actively involved in managing their illnesses, in partnership with their doctors. Indeed, one of the tabs on this blog is \"You're the Boss.\"","status":"publish","parent":0,"modified":1448316249,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":10,"wordCount":435},"headData":{"title":"How Candid Should Doctors Be with Patients at End of Life? | KQED","description":"Not so long ago in American healthcare, it was not uncommon for doctors to keep sick patients, even terminally ill patients, in the dark about their prognosis. But, today, many patients are actively involved in managing their illnesses, in partnership with their doctors. Indeed, one of the tabs on this blog is "You're the Boss."","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"Article","headline":"How Candid Should Doctors Be with Patients at End of Life?","datePublished":"2011-12-09T01:26:44.000Z","dateModified":"2015-11-23T22:04:09.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}},"disqusIdentifier":"1085 http://blogs.kqed.org/stateofhealth/?p=1085","disqusUrl":"https://ww2.kqed.org/stateofhealth/2011/12/08/how-much-do-elderly-patients-want-to-know-and-should-doctors-tell-them/","disqusTitle":"How Candid Should Doctors Be with Patients at End of Life?","path":"/stateofhealth/1085/how-much-do-elderly-patients-want-to-know-and-should-doctors-tell-them","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cfigure id=\"attachment_1099\" class=\"wp-caption alignleft\" style=\"max-width: 300px\">\u003ca href=\"http://ww2.kqed.org/stateofhealth/wp-content/uploads/sites/27/2011/12/Hands_RyanWilcox_Flickr_12082011.jpg\">\u003cimg class=\"size-medium wp-image-1099\" title=\"(Ryan Wilcox: Flickr)\" src=\"http://ww2.kqed.org/stateofhealth/wp-content/uploads/sites/27/2011/12/Hands_RyanWilcox_Flickr_12082011-300x200.jpg\" alt=\"(Ryan Wilcox: Flickr)\" width=\"300\" height=\"200\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">(Ryan Wilcox: Flickr)\u003c/figcaption>\u003c/figure>\n\u003cp>Not so long ago, it was common for doctors to keep sick patients, even terminally ill patients, in the dark about their prognosis. Today, many patients are actively involved in managing their illnesses, in partnership with their doctors. Indeed, one of the tabs on this blog is \"You're the Boss.\"\u003c/p>\n\u003cp>But a \"Perspective\" in today's\u003cem> \u003ca title=\"http://www.nejm.org/doi/full/10.1056/NEJMp1109990?query=TOC\" href=\"http://www.nejm.org/doi/full/10.1056/NEJMp1109990?query=TOC\" target=\"_blank\">New England Journal of Medicine\u003c/a>\u003c/em> says doctors have shied away from explicit conversations about prognosis with a group of patients they should engage--the very elderly. The writers recommend doctors discuss \"overall prognosis\" with elderly patients who have a life expectancy of less than 10 years or who are 85.\u003c/p>\n\u003cp>\u003c!--more-->If you're thinking that conversation sounds a bit, well, \u003cem>unpleasant\u003c/em>, research shows that a majority of elderly patients want to have the information. In one study, 55 percent of frail elderly patients whose doctor had never discussed their prognosis wanted to. In a second study, albeit a small one with 60 people including disabled African-American, Chinese-American, Latino and white patients, 65 percent said they would want to be told if they had less than five years to live.\u003c/p>\n\u003cp>The recommendations come from a team of doctors in the \u003ca title=\"http://geriatrics.medicine.ucsf.edu/\" href=\"http://geriatrics.medicine.ucsf.edu/\" target=\"_blank\">Division of Geriatrics at UC San Francisco\u003c/a> and the \u003ca title=\"http://www.sanfrancisco.va.gov/\" href=\"http://www.sanfrancisco.va.gov/\" target=\"_blank\">San Francisco VA Medical Center.\u003c/a> \"People want to know not just for medical reasons,\" said Dr. Alexander Smith of the San Francisco VA, one of the authors, \"but because they want to make life choices, put financial affairs in order, arrange for a durable power of attorney for health care and think about longterm care.\"\u003c/p>\n\u003cp>Smith is a palliative care physician, someone who is trained in talking with patients about challenging medical news. He acknowledged that it is a skill to have these conversations. But for many elderly patients, information about lifespan is not a surprise. \"In our experience, many older adults are aware that they are in life's final chapter, so such a conversation would not come as a shock to them. As physicians we have an obligation to give them honest information.\"\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>Of particular concern is the risk of many medical interventions, including screening tests. The writers cite a specific example of colonoscopy, an invasive procedure where the benefits may not be seen for years, benefits the patient may not live to see.\u003c/p>\n\u003cp>\"This is really about empowering patients,\" Smith said, \"giving patients information so they can make informed choices.\"\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>Still, doctors must tread carefully. While a majority of surveyed patients did want prognostic information, a sizable minority did not. Doctors should not force the discussion, the writers say.\u003c/p>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/stateofhealth/1085/how-much-do-elderly-patients-want-to-know-and-should-doctors-tell-them","authors":["240"],"categories":["stateofhealth_12","stateofhealth_14"],"tags":["stateofhealth_77"],"label":"stateofhealth"}},"programsReducer":{"possible":{"id":"possible","title":"Possible","info":"Possible is hosted by entrepreneur Reid Hoffman and writer Aria Finger. Together in Possible, Hoffman and Finger lead enlightening discussions about building a brighter collective future. The show features interviews with visionary guests like Trevor Noah, Sam Altman and Janette Sadik-Khan. Possible paints an optimistic portrait of the world we can create through science, policy, business, art and our shared humanity. It asks: What if everything goes right for once? How can we get there? 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You can also visit the MindShift website for episodes and supplemental blog posts or tweet us \u003ca href=\"https://twitter.com/MindShiftKQED\">@MindShiftKQED\u003c/a> or visit us at \u003ca href=\"/mindshift\">MindShift.KQED.org\u003c/a>","imageSrc":"https://cdn.kqed.org/wp-content/uploads/2024/04/Mindshift-Podcast-Tile-703x703-1.jpg","imageAlt":"KQED MindShift: How We Will Learn","officialWebsiteLink":"/mindshift/","meta":{"site":"news","source":"kqed","order":"2"},"link":"/podcasts/mindshift","subscribe":{"apple":"https://podcasts.apple.com/us/podcast/mindshift-podcast/id1078765985","google":"https://podcasts.google.com/feed/aHR0cHM6Ly9mZWVkcy5tZWdhcGhvbmUuZm0vS1FJTkM1NzY0NjAwNDI5","npr":"https://www.npr.org/podcasts/464615685/mind-shift-podcast","stitcher":"https://www.stitcher.com/podcast/kqed/stories-teachers-share","spotify":"https://open.spotify.com/show/0MxSpNYZKNprFLCl7eEtyx"}},"morning-edition":{"id":"morning-edition","title":"Morning Edition","info":"\u003cem>Morning Edition\u003c/em> takes listeners around the country and the world with multi-faceted stories and commentaries every weekday. 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