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	<title>Bioethics International &#187; Quality of Life Issues</title>
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	<description>Because just enough isn&#039;t good enough</description>
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		<title>Should Parents Lose Custody of Super Obese Kids?</title>
		<link>http://www.bioethicsinternational.org/blog/2011/07/16/should-parents-lose-custody-of-super-obese-kids/</link>
		<comments>http://www.bioethicsinternational.org/blog/2011/07/16/should-parents-lose-custody-of-super-obese-kids/#comments</comments>
		<pubDate>Sat, 16 Jul 2011 10:00:50 +0000</pubDate>
		<dc:creator>Lauren Rushing, BEI Intern</dc:creator>
				<category><![CDATA[Health Care Reform]]></category>
		<category><![CDATA[Human Research and Experimentation]]></category>
		<category><![CDATA[Human Rights and Discrimination]]></category>
		<category><![CDATA[Public Health]]></category>
		<category><![CDATA[Quality of Life Issues]]></category>
		<category><![CDATA[Social Matters]]></category>

		<guid isPermaLink="false">http://www.bioethicsinternational.org/blog/?p=2503</guid>
		<description><![CDATA[[NYT] CHICAGO (AP) — Should parents of extremely obese children lose custody for not controlling their kids&#8217; weight? A provocative commentary in one of the nation&#8217;s most distinguished medical journals argues yes, and its authors are joining a quiet chorus of advocates who say the government should be allowed to intervene in extreme cases.
It has [...]]]></description>
			<content:encoded><![CDATA[<p>[<a href="http://www.nytimes.com/aponline/2011/07/12/health/AP-US-MED-Obese-Kids-Custody.html?_r=1&amp;scp=1&amp;sq=Should%20Parents%20Lose%20custody%20of%20their%20obese%20children?&amp;st=cse">NYT</a>] CHICAGO (AP) — Should parents of extremely obese children lose custody for not controlling their kids&#8217; weight? A provocative commentary in one of the nation&#8217;s most distinguished medical journals argues yes, and its authors are joining a quiet chorus of advocates who say the government should be allowed to intervene in extreme cases.</p>
<p>It has happened a few times in the U.S., and the opinion piece in Wednesday&#8217;s Journal of the American Medical Association says putting children temporarily in foster care is in some cases more ethical than obesity surgery.</p>
<p>Dr. David Ludwig, an obesity specialist at Harvard-affiliated Children&#8217;s Hospital Boston, said the point isn&#8217;t to blame parents, but rather to act in children&#8217;s best interest and get them help that for whatever reason their parents can&#8217;t provide.</p>
<p><span id="more-2503"></span></p>
<p>State intervention &#8220;ideally will support not just the child but the whole family, with the goal of reuniting child and family as soon as possible. That may require instruction on parenting,&#8221; said Ludwig, who wrote the article with Lindsey Murtagh, a lawyer and a researcher at Harvard&#8217;s School of Public Health.</p>
<p>&#8220;Despite the discomfort posed by state intervention, it may sometimes be necessary to protect a child,&#8221; Murtagh said.</p>
<p>But University of Pennsylvania bioethicist Art Caplan said he worries that the debate risks putting too much blame on parents. Obese children are victims of advertising, marketing, peer pressure and bullying — things a parent can&#8217;t control, he said.</p>
<p>&#8220;If you&#8217;re going to change a child&#8217;s weight, you&#8217;re going to have to change all of them,&#8221; Caplan said.</p>
<p>Roughly 2 million U.S. children are extremely obese. Most are not in imminent danger, Ludwig said. But some have obesity-related conditions such as Type 2 diabetes, breathing difficulties and liver problems that could kill them by age 30. It is these kids for whom state intervention, including education, parent training, and temporary protective custody in the most extreme cases, should be considered, Ludwig said.</p>
<p>While some doctors promote weight-loss surgery for severely obese teens, Ludwig said it hasn&#8217;t been used for very long in adolescents and can have serious, sometimes life-threatening complications.</p>
<p>&#8220;We don&#8217;t know the long-term safety and effectiveness of these procedures done at an early age,&#8221; he said.</p>
<p>Ludwig said he starting thinking about the issue after a 90-pound 3-year-old girl came to his obesity clinic several years ago. Her parents had physical disabilities, little money and difficulty controlling her weight. Last year, at age 12, she weighed 400 pounds and had developed diabetes, cholesterol problems, high blood pressure and sleep apnea.</p>
<p>&#8220;Out of medical concern, the state placed this girl in foster care, where she simply received three balanced meals a day and a snack or two and moderate physical activity,&#8221; he said. After a year, she lost 130 pounds. Though she is still obese, her diabetes and apnea disappeared; she remains in foster care, he said.</p>
<p>In a commentary in the medical journal BMJ last year, London pediatrician Dr. Russell Viner and colleagues said obesity was a factor in several child protection cases in Britain. They argued that child protection services should be considered if parents are neglectful or actively reject efforts to control an extremely obese child&#8217;s weight.</p>
<p>A 2009 opinion article in Pediatrics made similar arguments. Its authors said temporary removal from the home would be warranted &#8220;when all reasonable alternative options have been exhausted.&#8221;</p>
<p>That piece discussed a 440-pound 16-year-old girl who developed breathing problems from excess weight and nearly died at a University of Wisconsin hospital. Doctors discussed whether to report her family for neglect. But they didn&#8217;t need to, because her medical crisis &#8220;was a wake-up call&#8221; for her family, and the girl ended up losing about 100 pounds, said co-author Dr. Norman Fost, a medical ethicist at the university&#8217;s Madison campus.</p>
<p>State intervention in obesity &#8220;doesn&#8217;t necessarily involve new legal requirements,&#8221; Ludwig said. Health care providers are required to report children who are at immediate risk, and that can be for a variety of reasons, including neglect, abuse and what doctors call &#8220;failure to thrive.&#8221; That&#8217;s when children are severely underweight.</p>
<p>Jerri Gray, a Greenville, S.C., single mother who lost custody of her 555-pound 14-year-old son two years ago, said authorities don&#8217;t understand the challenges families may face in trying to control their kids&#8217; weight.</p>
<p>&#8220;I was always working two jobs so we wouldn&#8217;t end up living in ghettos,&#8221; Gray said. She said she often didn&#8217;t have time to cook, so she would buy her son fast food. She said she asked doctors for help for her son&#8217;s big appetite but was accused of neglect.</p>
<p>Her sister has custody of the boy, now 16. The sister has the money to help him with a special diet and exercise, and the boy has lost more than 200 pounds, Gray said.</p>
<p>&#8220;Even though good has come out of this as far as him losing weight, he told me just last week, &#8216;Mommy, I want to be back with you so bad.&#8217; They&#8217;ve done damage by pulling us apart,&#8221; Gray said.</p>
<p>Stormy Bradley, an Atlanta mother whose overweight 14-year-old daughter is participating in a Georgia advocacy group&#8217;s &#8220;Stop Childhood Obesity&#8221; campaign, said she sympathizes with families facing legal action because of their kids&#8217; weight.</p>
<p>Healthier food often costs more, and trying to monitor kids&#8217; weight can be difficult, especially when they reach their teens and shun parental control, Bradley said. But taking youngsters away from their parents &#8220;definitely seems too extreme,&#8221; she said.</p>
<p>Dr. Lainie Ross, a medical ethicist at the University of Chicago, said: &#8220;There&#8217;s a stigma with state intervention. We just have to do it with caution and humility and make sure we really can say that our interventions are going to do more good than harm.&#8221;</p>
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		<title>Researchers Link Deaths to Social Ills</title>
		<link>http://www.bioethicsinternational.org/blog/2011/07/05/researchers-link-deaths-to-social-ills/</link>
		<comments>http://www.bioethicsinternational.org/blog/2011/07/05/researchers-link-deaths-to-social-ills/#comments</comments>
		<pubDate>Tue, 05 Jul 2011 15:08:50 +0000</pubDate>
		<dc:creator>Lauren Rushing, BEI Intern</dc:creator>
				<category><![CDATA[Bioethics & Disabilities]]></category>
		<category><![CDATA[Bioethics News]]></category>
		<category><![CDATA[Economics]]></category>
		<category><![CDATA[Health Care Reform]]></category>
		<category><![CDATA[Human Research and Experimentation]]></category>
		<category><![CDATA[Human Rights and Discrimination]]></category>
		<category><![CDATA[Public Health]]></category>
		<category><![CDATA[Quality of Life Issues]]></category>
		<category><![CDATA[Social Matters]]></category>

		<guid isPermaLink="false">http://www.bioethicsinternational.org/blog/?p=2456</guid>
		<description><![CDATA[[NYT] Poverty is often cited as contributing to poor health. Now, in an unusual approach, researchers have calculated how many people poverty kills and presented their findings, along with an argument that social factors can cause death the same way that behavior like smoking cigarettes does.
In an article published online for the June 16 issue [...]]]></description>
			<content:encoded><![CDATA[<p><a href="http://www.nytimes.com/2011/07/05/health/05social.html?_r=1">[NYT]</a> Poverty is often cited as contributing to poor health. Now, in an unusual approach, researchers have calculated how many people poverty kills and presented their findings, along with an argument that social factors can cause death the same way that behavior like smoking cigarettes does.</p>
<p>In an article published online for the June 16 issue of The American Journal of Public Health, scientists calculated the number of deaths attributable to each of six social factors, including low income.</p>
<p>To estimate the number of deaths caused by each factor, the scientists reviewed 47 earlier studies on the subject, combining the data in a meta-analysis. The studies were generally based on large national surveys like the National Health and Nutrition Examination Survey, a continuing study by the Centers for Disease Control and Prevention.</p>
<p>Then, using the pooled data, the researchers calculated the “population-attributable fraction” of deaths — that is, the number of deaths caused by living with a given social disadvantage.</p>
<p><span id="more-2456"></span></p>
<p>Finally, they multiplied that fraction by the total number of deaths in the year 2000 to come up with a number of deaths caused by each of the six social conditions. The researchers then separated the contribution of each social factor.</p>
<p>“The methods we’re using are limited,” Dr. Sandro Galea, the lead author, acknowledged. “Any time you try to say that death is attributable to a single cause, there’s a problem — all deaths are attributable to many causes. But what we did is just as valid as what was done to establish smoking as a cause of death.”</p>
<p>“This is a very interesting paper,” said Roger T. Anderson, a professor of public health sciences at Pennsylvania State College of Medicine who was not involved in the study. “It’s simple and elegant, a very straightforward approach to looking at these kinds of data.</p>
<p>“It brings to the surface what the impact of social disadvantage is in terms of numbers of deaths, and the authors have done a very nice job of laying out the argument.”</p>
<p>The researchers used various criteria to define an adverse social condition. Low education, for example, was defined as not having graduated from high school. Poverty was defined as a household income of less than $10,000. A population in which more than 25 percent of people reported their race or ethnicity as non-Hispanic black was considered racially segregated.</p>
<p>The study also calculated the effect of an area’s overall poverty level, income differential and low social support.</p>
<p>For 2000, the study attributed 176,000 deaths to racial segregation and 133,000 to individual poverty. The numbers are substantial. For example, looking at direct causes of death, 119,000 people in the United States die from accidents each year, and 156,000 from lung cancer.</p>
<p>Social factors are not the same as diseases or accidents, but Dr. Galea argues that they are equivalent to a behaviors like smoking, and that, as with smoking, there is evidence of the mechanism involved. He said that the causal chain between, for example, poverty and death from heart disease has many well-established links.</p>
<p>Dr. Galea also said that poverty results in poor access to health screening, poor access to quality care for those who actually have heart disease, greater vulnerability to stresses associated with heart disease and a greater likelihood of engaging in unhealthy behavior.</p>
<p>“In some ways,” Dr. Galea added, “the question is not ‘Why should we think of poverty as a cause of death?’ but rather ‘Why should we not think of poverty as a cause of death?’ ”</p>
<p>If they had not smoked, 400,000 people each year would not have died, Dr. Galea said. Similarly, he said, if they had graduated from high school, the 245,000 people whose cause of death he attributes to low education would still be alive.</p>
<p>“This might be a useful lens to help focus our minds,” said Dr. Galea, who is the chairman of the department of epidemiology at the Mailman School of Public Health at Columbia University. “If you say that 193,000 deaths are due to heart attack, then heart attack matters. If you say 300,000 deaths are due to obesity, then obesity matters.</p>
<p>“Well, if 291,000 deaths are due to poverty and income inequality, then those things matter too.”</p>
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		<title>Dying with Your Rights On: Mental Illness, Civil Rights and Saving Lives</title>
		<link>http://www.bioethicsinternational.org/blog/2011/06/07/dying-with-your-rights-on-mental-illness-civil-rights-and-saving-lives/</link>
		<comments>http://www.bioethicsinternational.org/blog/2011/06/07/dying-with-your-rights-on-mental-illness-civil-rights-and-saving-lives/#comments</comments>
		<pubDate>Tue, 07 Jun 2011 18:50:05 +0000</pubDate>
		<dc:creator>Yara Tercero-Parker, BEI Intern</dc:creator>
				<category><![CDATA[Health Care Reform]]></category>
		<category><![CDATA[Hospitals]]></category>
		<category><![CDATA[Human Rights and Discrimination]]></category>
		<category><![CDATA[Informed Consent]]></category>
		<category><![CDATA[Privacy]]></category>
		<category><![CDATA[Public Health]]></category>
		<category><![CDATA[Quality of Life Issues]]></category>
		<category><![CDATA[World News - Home]]></category>
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		<guid isPermaLink="false">http://www.bioethicsinternational.org/blog/?p=2421</guid>
		<description><![CDATA[[Huffington Post]- I am a psychiatrist who has treated patients for over 35 years, run all varieties of psychiatric services and worked in city and state government. But I still cannot bear to read or hear a story of a fatal outcome for a person with a serious mental illness who dies from neglect or [...]]]></description>
			<content:encoded><![CDATA[<p>[<a href="http://www.huffingtonpost.com/lloyd-i-sederer-md/mental-health-care_b_871274.html">Huffington Post</a>]- I am a psychiatrist who has treated patients for over 35 years, run all varieties of psychiatric services and worked in city and state government. But I still cannot bear to read or hear a story of a fatal outcome for a person with a serious mental illness who dies from neglect or some form of self-harm. I was especially distressed to read an article in The New Yorker (Rachel Aviv, May 30, 2011, Annals of Mental Health) called &#8220;God Knows Where I Am: What should happen when patients reject their diagnosis?&#8221; The article deeply troubled me because of the outcome for the person it profiled: Linda Bishop was found dead, presumably from starvation and hypothermia, in a home she had broken into in New Hampshire several months after she had a two-year psychiatric hospitalization. Her last journal notation was in January 2008, and her body was accidently discovered in May.</p>
<p>Neither Bishop&#8217;s sister, a longtime advocate for her (who works in the justice system) whom a court years earlier declined to make Bishop&#8217;s legal guardian, nor Bishop&#8217;s daughter were informed of her condition during her extended stay in New Hampshire&#8217;s state hospital &#8212; nor were they told when she was discharged. Instead, a fantasy relationship that Bishop had for years in her head, with no contact with the man, was her plan for support, even marriage, upon leaving the hospital.</p>
<p>The story of Linda Bishop&#8217;s multiple psychiatric hospitalizations, her misdemeanor (non-violent) offenses and time in jail, her abandonment of her teenage daughter, her assertion that she was not mentally ill and her refusal to follow any treatment plan, the lack of evidence that she could care for herself, and the self-imposed distance from her family was all too familiar to me and my colleagues working in public mental health, even if the details of her situation may vary in some ways from others. Recognized experts (and longtime colleagues) Drs. Tom Gutheil and Paul Appelbaum in 1979 (!) aptly called this type of tragedy &#8220;rotting with their rights on.&#8221;</p>
<p>Our laws stipulate that Bishop had to consent to provide information to her family, which she did not. Privacy violations would have been the consequence of the hospital contacting her family during the hospital stay or at the time of discharge. Bishop&#8217;s &#8220;right&#8221; to live where (and how) she wanted derives from legal rulings that stipulate a person&#8217;s right to live in what is called &#8220;the least restrictive setting.&#8221;</p>
<p>The letter of the law had been met. And the patient died.<br />
<span id="more-2421"></span><br />
Arguments have been made on the polar extremes of this dilemma. On one side are patient rights advocates who are stalwart about privacy and self-determination. In fact, legal organizations are present to defend these rights in state hospitals throughout this country. Considerable legal rulings now protect individuals from involuntary hospitalization and involuntary treatment by requiring court action to achieve both, with the exception of emergency situations. On the other side are advocates calling for increasing commitments of people with serious mental illness, including outpatient commitment (and requiring that those committed take psychiatric medications for their disorders), and longer hospital stays.</p>
<p>Never having been one for extremes, except maybe when it came to my playing sports, I believe there are viable middle grounds &#8212; even if difficult to reach.</p>
<p>For example, nine years ago the first Mental Health Court was established in New York City, under the remarkable (and continued) leadership of Judge Matthew D&#8217;Emic. There are now seven such courts in NYC, about 25 in New York State and approximately 200 around the country (not counting drug and domestic violence courts). A mental health court accepts referrals from other courts where there appears to be a mental illness complicating the crime. Court mental health specialists evaluate the person for a mental illness, and if present, the defendant can plead guilty (in New York State) and be &#8220;sentenced&#8221; to court ordered treatment under the supervision of the judge; other states may divert the person from jail, have charges held in abeyance pending completion of the treatment program, or other procedures according to local statute. This form of supervised treatment is typically for a year (the maximum sentence for a misdemeanor). More recently, there are mental health courts working with felons where the court ordered treatment can go on for years.</p>
<p>For example, outpatient commitment already exists in almost every state (this has been the case in New York State for over 10 years, instituted after Kendra Webdale was pushed before an oncoming subway train by a man with a psychotic illness). The law, Kendra&#8217;s Law, has been renewed twice, each time for five years. We don&#8217;t need more outpatient commitment (though some state statutes warrant updating); we need more outpatient treatment that works.</p>
<p>Which brings me to my main point: outpatient mental health services in this country don&#8217;t work very well, despite the dedicated people who work for them. The result is that early intervention and the provision of comprehensive, continuous, proven (evidence-based) treatments is being delivered to less than 20 percent (!) of people who need it. That means more than four out of five people are not getting what they need for their illness and recovery. Lack of good care coupled with lack of housing are the principal drivers for the clinical deterioration, chronic homelessness, use of jails and prisons as institutions to contain people with mental disorders, and suicidal and violent behaviors among those who are mentally ill. This country is in need of a mental health overhaul, as candidly portrayed in the President&#8217;s New Freedom Commission on Mental Health (December 2002; disclosure: the Commission&#8217;s chair was Michael Hogan, Ph.D., now Mental Health Commissioner for the state of New York, and my boss).</p>
<p>Mental health has treatments that work. It has mission-oriented professionals and provider organizations. But it lacks organization, accountability and financing that pays for what is accomplished rather than what is simply done. Sounds familiar? That&#8217;s because mental health care is part of health care, where the same issues apply in capital letters.</p>
<p>As this country grinds its way to a more responsive, and hopefully affordable, health care system, what can be done now? For one, mental health clinics can be held to specific standards of care and their licenses made dependent on delivering those standards. Measurement-based care can be introduced (and required) where improvement from mental illness is tracked just like we track blood pressure, blood sugar and lipids. Incremental financing reforms can better support evidence-based practices as well as outreach and engagement of those hardest to reach and retain in care. People in recovery from mental illness (called peers or consumers) can be made a part of the public mental health system so they serve as navigators and trusted persons for those wary of mental health care. And no one stands a decent chance of getting better from a serious mental illness without safe and reliable housing with access to quality health and mental health services.</p>
<p>Indifference is cruel and costly. We can make a difference. People can have their rights and their lives &#8212; and their families, too. That&#8217;s what health care, including mental health care, is really all about.</p>
<p><em>The opinions expressed herein are solely my own as a psychiatrist and public health advocate.</p>
<p>I receive no support from any pharmaceutical or device company.</em></p>
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		<title>End-of-life Care Changes Called For</title>
		<link>http://www.bioethicsinternational.org/blog/2011/05/19/end-of-life-care-changes-called-for/</link>
		<comments>http://www.bioethicsinternational.org/blog/2011/05/19/end-of-life-care-changes-called-for/#comments</comments>
		<pubDate>Thu, 19 May 2011 20:07:40 +0000</pubDate>
		<dc:creator>Yara Tercero-Parker, BEI Intern</dc:creator>
				<category><![CDATA[End of Life Care]]></category>
		<category><![CDATA[Hospitals]]></category>
		<category><![CDATA[Insurance]]></category>
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		<guid isPermaLink="false">http://www.bioethicsinternational.org/blog/?p=2394</guid>
		<description><![CDATA[[Yahoo]- End-of-life care falls short of what the average person wants, says a new study that compares palliative care in the U.S. and Ontario.
While most patients prefer supportive measures that avoid a hospital death, U.S. patients received more chemotherapy. Ontario patients have more days in hospital, have more use of emergency rooms, and were much [...]]]></description>
			<content:encoded><![CDATA[<p>[<a href="http://ca.news.yahoo.com/end-life-care-changes-called-003926558.html">Yahoo</a>]- End-of-life care falls short of what the average person wants, says a new study that compares palliative care in the U.S. and Ontario.</p>
<p>While most patients prefer supportive measures that avoid a hospital death, U.S. patients received more chemotherapy. Ontario patients have more days in hospital, have more use of emergency rooms, and were much more likely to die in hospital.</p>
<p>An editorial about the study concludes the rates of inpatient deaths are too high in the U.S. and much too high in Ontario.</p>
<p>The study was done by the National Cancer Institute and specifically compared end-of-life care for lung cancer patients. The identified patients were 65 and older who died with non-small cell lung cancer.<br />
<span id="more-2394"></span><br />
The data came from The Ontario Cancer Registry and the U.S. Surveillance, Epidemiology, and End Results(SEER)-Medicare data bases for 1999-2003.</p>
<p>Patients in both countries used health-care services extensively, particularly in the last month of life. Ontario patients had hospital admissions and used emergency room services at rates that were statistically significantly greater than those of U.S. patients.</p>
<p>More than twice as many Ontario patients died in hospital (48.5 per cent of short-term survivors compared to 20.4 per cent in the U.S.). Yet, a majority of Ontario patients reported they would prefer to die at home.</p>
<p>In each of the last five months, chemotherapy rates were statistically significantly higher among U.S. patients than among the Ontario patients. It was noted that American doctors may have a more aggressive attitude toward treatment and that oncologists paid by Medicare can profit from some chemotherapy whereas oncologists in Ontario do not have a financial incentive to prescribe chemotherapy.</p>
<p>The authors of the study, including Joan L. Warren of the National Cancer Institute, felt the findings will inform health-care planners and policy makers about opportunities for change.</p>
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		<title>U.S. End-of-Life Care Changing: While Medicare Patients are Spending Less Time in the Hospital, Those Admitted Receive More Intensive Care</title>
		<link>http://www.bioethicsinternational.org/blog/2011/04/14/u-s-end-of-life-care-changing-while-medicare-patients-are-spending-less-time-in-the-hospital-those-admitted-receive-more-intensive-care/</link>
		<comments>http://www.bioethicsinternational.org/blog/2011/04/14/u-s-end-of-life-care-changing-while-medicare-patients-are-spending-less-time-in-the-hospital-those-admitted-receive-more-intensive-care/#comments</comments>
		<pubDate>Thu, 14 Apr 2011 11:00:16 +0000</pubDate>
		<dc:creator>Yara Tercero-Parker, BEI Intern</dc:creator>
				<category><![CDATA[Economics]]></category>
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		<guid isPermaLink="false">http://www.bioethicsinternational.org/blog/?p=2362</guid>
		<description><![CDATA[[RWJF]- First report showing longitudinal change demonstrates differing trends across geographic regions and individual hospitals and academic medical centers.
Chronically ill Medicare patients spent fewer days in the hospital and received more hospice care in 2007 than they did in 2003, but at the same time there was an increase in the intensity of care for [...]]]></description>
			<content:encoded><![CDATA[<p>[<a href="http://www.rwjf.org/qualityequality/product.jsp?id=72192&amp;cid=XEM_205605">RWJF</a>]- First report showing longitudinal change demonstrates differing trends across geographic regions and individual hospitals and academic medical centers.</p>
<p>Chronically ill Medicare patients spent fewer days in the hospital and received more hospice care in 2007 than they did in 2003, but at the same time there was an increase in the intensity of care for patients who were hospitalized, according to a new Dartmouth Atlas Project report on trends and variation in end-of-life care.</p>
<p>While Medicare patients diagnosed with severe chronic illness were less likely to die in a hospital and more likely to receive hospice care, at the same time, they had many more visits from physicians, particularly medical specialists, and spent more days in intensive care units. Growth in intensive care and medical specialist capacity, the researchers say, can lead to increased aggressiveness of care.</p>
<p>“In addition to its effects on patients’ quality of life, unnecessarily aggressive care carries a high financial cost. About one-fourth of all Medicare spending goes to pay for the care of patients in their last year of life, and much of the growth in Medicare spending is the result of the high cost of treating chronic disease,” said David C. Goodman, M.D., M.S., lead author and co-principal investigator for the Dartmouth Atlas Project, and director of the Center for Health Policy Research at the Dartmouth Institute for Health Policy and Clinical Practice. “It may be possible to reduce spending, while also improving the quality of care, by ensuring that patient preferences are more closely followed.”<br />
<span id="more-2362"></span><br />
This report updates previous findings regarding regional variations in end-of-life care, documenting trends from 2003 to 2007 in the use of medical resources to treat Medicare patients at the end of life, both among hospital referral regions and among 94 academic medical centers. Throughout this period, the constant was the importance of geography; the care patients received in the months before they died depended largely on where they lived and received their care. Researchers found that trends in end-of-life care differed substantially across regions and academic medical centers, and that widespread variation persists.</p>
<p>For example, even at academic medical centers, the experiences of patients at the end of life differ remarkably. Most academic medical centers substantially changed the intensity of the end-of-life care they provided from 2003 to 2007, but not in the same direction; some increased the intensity of care, while others provided less intensive care.</p>
<p><em>Deaths Occurring in Hospitals</em></p>
<p>From 2003 to 2007, the percentage of chronically ill patients dying in hospitals and the average number of days they spent in the hospital before their deaths declined in most regions of the country and at most academic medical centers. In 2003, 32.2 percent of patients died in a hospital; by 2007, the rate had dropped to 28.1 percent. In 2007, the highest rates of death in a hospital were in regions in and around New York City, including Manhattan (45.8%), East Long Island (41.9%) and the Bronx (39.9%). Chronically ill patients were far less likely to die in a hospital in Minot, N.D. (12.0%), Fort Lauderdale, Fla. (19.0%) and Portland, Ore. (19.6%).</p>
<p>Among patients using academic medical centers for most of their care, rates of deaths occurring in the hospital also decreased. Even so, several hospitals that had among the lowest rates in 2003 saw substantial decreases over the five-year period; one example is University of Utah Health Care in Salt Lake City, where the rate dropped from 31.5 percent to 21.3 percent. In comparison, in 2003, UCLA Medical Center and the Medical College of Georgia in Augusta had very similar rates, at 39.1 percent and 39.7 percent, respectively. Over the next five years, their rates moved in opposite directions, with UCLA joining those medical centers with the highest rates at 45.5 percent, while the rate at the Medical College of Georgia dropped to 28.7 percent.</p>
<p><em>Hospital Days During the Last Six Months of Life</em></p>
<p>Overall, the average patient spent slightly fewer days in the hospital during the last six months of life in 2007 than in 2003, as the national rate dropped from 11.3 to 10.9 hospital days per patient. In 2007, chronically ill patients in Manhattan spent, on average, 20.6 days in the hospital during their last six months of life, almost four times more than patients in Ogden, Utah, where the average was 5.2 days.</p>
<p>Among those academic medical centers where patients spent less time in the hospital in 2007 than in 2003 were the University of Texas Medical Branch Hospitals in Galveston (-5.0 days), the University of Iowa Hospitals and Clinics in Iowa City (-5.0 days) and Tufts-New England Medical Center in Boston (-4.6 days). Ten academic medical centers had increases of at least two days, including Hahnemann University Hospital in Philadelphia (+6.8 days).</p>
<p><em>Patients Seeing 10 or More Doctors During the Last Six Months of Life</em></p>
<p>Overall, chronically ill patients were significantly more likely to be treated by 10 or more doctors in the last six months of life in 2007 than they were in 2003, as the national rate increased from 30.8 percent to 36.1 percent. In 2007, patients in Royal Oak, Mich. received the most intensive care by this measure, with 58.1 percent of patients seeing 10 or more doctors in the last six months of life. Other regions with high rates included Ridgewood, N.J. (57.6%) and Philadelphia (57.2%). Regions with low rates included Boise, Idaho (14.2%), Salt Lake City (15.0%) and Medford, Ore. (16.4%).</p>
<p>From 2003 to 2007, among the 35 academic medical centers for which data are available, 22 had increases in the percentage of patients seeing 10 or more doctors in the last six months of life. Emory University Hospital saw the largest growth in this rate, from 40.4 percent to 63.2 percent, while the University of North Carolina Hospitals in Chapel Hill had the largest decrease, from 45.0 percent to 35.2 percent. In 2003, the likelihood that a patient at Emory University Hospital would see 10 or more doctors was similar to that for a patient at the University of North Carolina Hospitals. But over the next five years, the percentage of patients seeing 10 or more doctors increased 22.8 percentage points at Emory, while the percentage dropped 9.8 percentage points at UNC Hospitals.</p>
<p>“The differences observed across regions and academic medical centers in the approach to caring for patients with chronic illness underscore important opportunities to learn how to improve end-of-life care. While current trends demonstrate that change is occurring in many regions and at many institutions, it is not always in the direction that patients may prefer,” said Elliott S. Fisher, M.D., M.P.H., report author and co-principal investigator of the Dartmouth Atlas Project and director of the Center for Population Health at the Dartmouth Institute for Health Care Policy and Clinical Practice. “More work remains to ensure that future variation in care reflects the well-informed preferences of patients.”</p>
<p>The researchers explain that variations in the treatment of chronically ill Medicare patients depend largely on the systems of care within different regions and hospitals. For example, declines in the rates of death in a hospital and of death associated with admission to intensive care may also be evidence of attempts to provide care that aligns more closely with many patients’ preferences. But not all hospitals changed at the same pace. Furthermore, the number of ICU days in the last six months of life increased both nationally and in most hospitals and regions; so, too, did the amount of physician labor used.</p>
<p>“This report has important implications for patients, health care providers and policy-makers. By providing insight into patterns of care, patients can look to these data to get a sense of where care is likely to be more or less intensive. Providers can look for insights into potential savings they can achieve through improved care of chronic illness that allows patients to remain safely out of the hospital, and policy-makers can identify regions that may have promising approaches,” said Risa Lavizzo-Mourey, M.D., M.B.A., president and CEO of the Robert Wood Johnson Foundation, a longtime funder of the Dartmouth Atlas Project.</p>
<p>The Dartmouth Atlas Project is located at the Dartmouth Institute for Health Policy and Clinical Practice. A link to the full report, Trends and Variation in End-of-Life Care for Medicare Beneficiaries with Severe Chronic Illness, and data tables can be found at <a href="http://www.dartmouthatlas.org/">www.dartmouthatlas.org</a>.</p>
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		<title>Medical Student Distress and the Risk of Doctor Suicide</title>
		<link>http://www.bioethicsinternational.org/blog/2010/10/11/medical-student-distress-and-the-risk-of-doctor-suicide/</link>
		<comments>http://www.bioethicsinternational.org/blog/2010/10/11/medical-student-distress-and-the-risk-of-doctor-suicide/#comments</comments>
		<pubDate>Mon, 11 Oct 2010 16:38:52 +0000</pubDate>
		<dc:creator>Jennifer Miller, Bioethicist</dc:creator>
				<category><![CDATA[Clinician Legal Liability]]></category>
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[NYT]  Several years ago, I learned that a physician in a town not too far from where I was practicing had committed suicide. Neither I nor my hospital colleagues knew him, but according to the story we heard, he was the father of young children, was respected by doctors and patients alike and had struggled [...]]]></description>
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<div>[<a href="http://www.nytimes.com/2010/10/07/health/views/07chen.html?pagewanted=1&amp;_r=2&amp;ref=health">NYT</a>]  Several years ago, I learned that a physician in a town not too far from where I was practicing had committed suicide. Neither I nor my hospital colleagues knew him, but according to the story we heard, he was the father of young children, was respected by doctors and patients alike and had struggled privately with mental illness since medical school.</div>
<div><img style="border: 0px;" src="http://graphics8.nytimes.com/images/2010/10/07/health/07chen/07chen-articleLarge.jpg" border="0" alt="" width="360" height="212" />But it was not the details of his life that haunted us; it was the details of his death. He had locked himself in a room in the hospital, placed a large needle in his vein and injected himself with a drug that so effectively paralyzed his muscles he was unable to breathe. Or call for help.</div>
<p>For days afterward, the doctor’s death came up repeatedly in conversations. We talked about the grief his family must have been experiencing and speculated on the extent of depression and self-loathing he must have experienced, but we dared not speak of, let alone imagine, the agony of his final moments.</p>
<p>Always, we ended up asking one another the same question: How could a doctor — who most likely knew about what he was suffering from and about the treatments available — never seek help?</p>
<p>For several decades now, studies have consistently shown that physicians have <a title="New England Journal of Medicine study on physician suicide." href="http://www.nejm.org/doi/full/10.1056/NEJMp058014">higher rates of suicide than the general population</a> — 40 percent higher for male doctors and a staggering 130 percent higher for female doctors. While research has traced the beginning of this tragic difference to the years spent in medical school, the contributing factors remain murky. Students enter medical school with mental health profiles similar to those of their peers but end up experiencing depression, burnout and other mental illnesses at higher rates. Despite better access to health care, they are more likely to cope by resorting to dysfunctional behaviors like excessive drinking and are less likely to receive the right care or even recognize that they need some kind of intervention.<span id="more-1957"></span></p>
<p>Researchers have offered several theories to explain these seemingly paradoxical findings. Some have faulted the increasing social isolation of medical education, training and practice. Others have pointed to the tendency for doctors to be highly critical of themselves and to blame themselves for their own illnesses. Still others, in light of the particularly high rates of suicide among female doctors, have suggested that workplace harassment may have a role.</p>
<p>Despite the many studies, theories and, more recently, student wellness programs and confidential mental health services offered by more and more medical schools, the grim statistics for medical students have hardly budged over the last generation. Up to a quarter of young doctors-to-be suffer from depression, more than half may be experiencing burnout, and a just more than 10 percent may be <a title="Annals of Internal Medicine Study on medical student burnout." href="http://www.annals.org/content/149/5/334.abstract">harboring thoughts of suicide</a>.</p>
<p>These sobering numbers have remained unchanged in large part because our understanding of this issue has been hampered by inadequate research methodologies and insufficient financial support. We haven’t had the sophisticated tools needed to analyze the causes or appropriate interventions; and even if we did, we haven’t had the money to do anything with them.</p>
<p>Now two groups of researchers, using innovative methods and financed by medical school programs and departments with a keen interest in physician well-being, have published separate studies in The Journal of the American Medical Association that go beyond incidence statistics and theoretical considerations. Each study offers new findings about medical student distress and how the learning environment both fosters and exacerbates it. Read together, they offer disquieting views of the world in which tomorrow’s doctors are formed.</p>
<p>“There’s no arguing anymore over whether there’s a high prevalence of distress,” said Dr. Liselotte N. Dyrbye, lead author of <a title="Journal of the American Medical Association study on burnout and professional conduct." href="http://jama.ama-assn.org/cgi/content/short/304/11/1173?rss=1">one of the studies</a> and an associate professor of medicine at the Mayo Clinic in Rochester, Minn. “What’s important now is that we hold a mirror up to ourselves and ask why this is happening, because it is clearly not what we medical educators have intended.”</p>
<p>Previous studies have linked medical student distress to unprofessional behavior. But, as Dr. Dyrbye and her colleagues show in their research, different types of distress — professional versus personal — can have very different effects on a young doctor’s sense of what is right and wrong.</p>
<p>Surveying more than 2,500 medical students across the country, the researchers found that students who suffered from professional distress, more commonly referred to as burnout, a constellation of emotional exhaustion, detachment and a low sense of accomplishment, were more likely to admit to cheating on tests, lying about the status of a patient’s laboratory tests or physical exam and espousing less altruistic views regarding their role as physicians. Conversely, students who suffered from personal distress, defined as poor mental or physical quality of life or depression, were not more susceptible to these unprofessional behaviors and self-centered beliefs.</p>
<p>“There certainly is some overlap,” Dr. Dyrbye said. “But depression and burnout are two separate entities.”</p>
<p>One result of erroneously conflating the two types of distress is stigmatization of mental illness. According to <a title="Journal of the American Medical Association study on suicidal thoughts in med students." href="http://jama.ama-assn.org/cgi/content/abstract/304/11/1181">the second study</a>, conducted by researchers from the University of Michigan in Ann Arbor, medical students who are depressed or prone to depression often believe they are viewed as inadequate and incompetent by those around them.</p>
<p>“They feel this from every direction — from other medical students, faculty members, counselors, and even in their applications for residency training,” said the study’s lead author, Dr. Thomas L. Schwenk, a professor of family medicine at the University of Michigan. While depression can cause individuals to have negative and distorted views of their surroundings, “the culture of medical school makes these students also feel like they can’t be vulnerable or less than perfect.”</p>
<p>Given that students must compete with one another throughout medical school for postgraduate training positions, many have a difficult time admitting to any perceived weakness. For those who do and want help, there are more obstacles: with the sense that peers, faculty members and others are likely to judge distressed students as less competent, it is nearly impossible to find somewhere truly safe to turn.</p>
<p>But this “survival of the fittest” mentality can affect all medical students, not just those who are depressed or burned out. And it can affect patients by wearing away at a young doctor’s sense of empathy.</p>
<p>“If this is the way that students view each other,” Dr. Schwenk said, “how do they view their patients who are depressed or struggling with mental illness?”</p>
<p>More long-term studies are needed to test interventions and analyze the factors contributing to student distress. “We have to assume that starting in medical school, there’s a pipeline of experiences that leads to an increased risk of suicide,” Dr. Schwenk said. But without more evidence-based interventions, even the best intentions of medical educators will continue to do little to stem the tide of medical student distress and physician suicides.</p>
<p>That failure has already and will continue to come at a tremendous cost to doctors and patients. “I still believe that the people who are the most vulnerable are often the most empathic,” Dr. Dyrbye said. “They are the ones who get most attached and put the needs of the patient first.”</p>
<p>Dr. Dyrbye continued, “Until we know what really helps them and what works best, our learning environment will continue to eat away at our students’ empathy and altruism.”</p></div>
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		<title>Study finds that combined costs of medical malpractice &amp; &#8216;defensive medicine&#8217; comprise only 2.4% of US health care costs</title>
		<link>http://www.bioethicsinternational.org/blog/2010/09/10/a-new-study-has-found-that-the-combined-costs-of-medical-malpractice-and-so-called-defensive-medicine-make-up-only-2-4-of-the-total-costs-of-health-care-in-the-united-states/</link>
		<comments>http://www.bioethicsinternational.org/blog/2010/09/10/a-new-study-has-found-that-the-combined-costs-of-medical-malpractice-and-so-called-defensive-medicine-make-up-only-2-4-of-the-total-costs-of-health-care-in-the-united-states/#comments</comments>
		<pubDate>Fri, 10 Sep 2010 13:32:54 +0000</pubDate>
		<dc:creator>Jennifer Miller, Bioethicist</dc:creator>
				<category><![CDATA[Economics]]></category>
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		<description><![CDATA[[aboutlawsuits - blog] A new study has found that the combined costs of medical malpractice and so-called defensive medicine make up only 2.4% of the total costs of health care in the United States. 
The study was conducted by researchers from the Harvard School of Public Health and was published in the September issue of the journal [...]]]></description>
			<content:encoded><![CDATA[<p>[<a href="http://www.aboutlawsuits.com/medical-malpractice-costs-study-12639/">aboutlawsuits</a> - blog] A new study has found that the combined costs of medical malpractice and so-called defensive medicine make up only 2.4% of the total costs of health care in the United States. </p>
<p>The study was conducted by researchers from the Harvard School of Public Health and was published in the September issue of the journal <a href="http://content.healthaffairs.org/cgi/content/abstract/29/9/1569" target="_blank"><em>Health Affairs</em></a>. Researchers found that attempting to reduce the number of <a href="http://www.youhavealawyer.com/malpractice/index.html">medical malpractice lawsuits</a> would result in only a negligible effect on the cost of health care, and reducing the cost of defensive medicine would do little more.</p>
<p>According to the <a href="https://www.cms.gov/NationalHealthExpendData/25_NHE_Fact_Sheet.asp" target="_blank">U.S. Department of Health and Human Services</a>, the total cost of health care in 2008 was $2.3 trillion, breaking down to about $7,681 per person. The Harvard researchers analyzed a number of factors and components of the nation’s health care system and determined that in 2008 the U.S. spent about $55.6 billion on medical malpractice lawsuits and defensive medicine, representing about 2.4% of the entire budget. Of that, $45.6 billion was spent on defensive medicine; meaning only about $10 billion, or 0.13%, was actually spent on medical malpractice lawsuits and costs.</p>
<p>Defensive medicine involves medical tests and procedures performed primarily to avoid medical malpractice liability and not to improve or safeguard the patient’s health. The findings of the study indicate that defensive medicine costs far less than most health care experts thought, researchers said.</p>
<p>In another <a href="http://content.healthaffairs.org/cgi/content/abstract/29/9/1585" target="_blank">malpractice study</a> published in the same issue of <em>Health Affairs</em>, researchers from the Center for Studying Health System Change in Washington, D.C. and some of the same researchers from the Harvard study found that not only would limiting medical malpractice lawsuits not make a large impact on the cost of health care, but it also would not prevent doctors from performing defensive medicine. The study found that placing malpractice caps on non-economic damages resulted in no significant difference in doctors’ perceptions of malpractice risk.</p>
<p>The findings shore up a <a href="http://www.aboutlawsuits.com/medical-malpratice-payments-low-8576/">health care costs report</a> in March by the consumer advocacy group, Public Citizen, which found that payments for medical malpractice lawsuits were at an all-time low and suggested that the entire cost of medical liability in the U.S. was between 0.6% and 1.3% of the national cost of health care. Their study found that some states with strict tort reform laws saw health insurance costs, and the number of uninsured, skyrocket.</p>
<p>The Public Citizen report also found that the U.S. health care system could save far more money by improving the quality of health care. This would reduce both the need for medical malpractice lawsuits and the expensive costs of extra hospitalization and treatment for avoidable medical problems such as hospital-acquired infections, wrong site surgeries, bedsores, and hospital-acquired pneumonia.</p>
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		<title>Senate bill would encourage drugs targeting rare kids&#8217; diseases</title>
		<link>http://www.bioethicsinternational.org/blog/2010/08/09/senate-bill-would-encourage-drugs-targeting-rare-kids-diseases/</link>
		<comments>http://www.bioethicsinternational.org/blog/2010/08/09/senate-bill-would-encourage-drugs-targeting-rare-kids-diseases/#comments</comments>
		<pubDate>Mon, 09 Aug 2010 13:53:38 +0000</pubDate>
		<dc:creator>Jennifer Miller, Bioethicist</dc:creator>
				<category><![CDATA[Corporate Ethics & CSR]]></category>
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		<description><![CDATA[[The Hill]  A group of bipartisan senators this week introduced legislation to entice drug makers to focus more intently on cures for uncommon children&#8217;s diseases.
Sponsored by Sens. Sherrod Brown (D-Ohio), Sam Brownback (R-Kan.) and Al Franken (D-Minn.), the Creating Hope Act aims to solve a nagging problem inherent to the market-driven world of pharmaceutical manufacturing: [...]]]></description>
			<content:encoded><![CDATA[<p>[<a href="http://thehill.com/blogs/healthwatch/prescription-drug-policy/113109-senate-bill-would-expedite-drugs-targeting-rare-kids-diseases">The Hill</a>]  A group of bipartisan senators this week introduced legislation to entice drug makers to focus more intently on cures for uncommon children&#8217;s diseases.</p>
<p>Sponsored by Sens. Sherrod Brown (D-Ohio), Sam Brownback (R-Kan.) and Al Franken (D-Minn.), the Creating Hope Act aims to solve a nagging problem inherent to the market-driven world of pharmaceutical manufacturing: how to encourage the creation of expensive-to-develop drugs that few patients need?</p>
<p>The lawmakers hope to do so by offering expedited FDA approval of potentially popular drugs to pharmaceutical companies that develop treatments for rare pediatric diseases. The idea is that the financial incentive associated with bringing &#8220;blockbuster&#8221; drugs to the market sooner will encourage companies to work harder researching the lesser needed treatments.<span id="more-1873"></span></p>
<p>The proposal expands on a 2007 law that offers &#8220;priority review vouchers&#8221; to companies that develop new drugs for neglected tropical diseases. Drugs yielding vouchers, under the bill, must meet the definition of &#8220;rare&#8221; established by the Orphan Drug Act, and must not have previous approval from the FDA.</p>
<p>The bill would also prohibit companies from getting vouchers under the 2007 law for drugs already on the market abroad. Closing that loophole would force the companies to create new treatments, rather than simply bringing old ones to market in the U.S.</p>
<p>The National Institutes of Health estimates that there are more than 6,000 diseases qualifying as rare under the Orphan Drug Act, a vast majority of which get little or no drug company research money because the return on investment would be so small.</p>
<p>&#8220;We are falling woefully and inadequately short in our efforts to cure and treat rare and neglected pediatric diseases and conditions,&#8221; Brown said in a statement announcing the bill. </p>
<p>Kids&#8217; healthcare advocates agree. </p>
<p>&#8220;This legislation aligns government and private sector interests and will be a major step forward in addressing the unmet needs of children with devastating illnesses, including life-threatening cancer,&#8221; said Nancy Goodman, executive director of Kids v Cancer</p>
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		<title>Obama&#8217;s Health Rationer-in-Chief &#8211; White House health-care adviser Ezekiel Emanuel blames Hippocratic Oath for &#8216;overuse&#8217; of medical care</title>
		<link>http://www.bioethicsinternational.org/blog/2010/07/17/obamas-health-rationer-in-chief-white-house-health-care-adviser-ezekiel-emanuel-blames-hippocratic-oath-for-overuse-of-medical-care/</link>
		<comments>http://www.bioethicsinternational.org/blog/2010/07/17/obamas-health-rationer-in-chief-white-house-health-care-adviser-ezekiel-emanuel-blames-hippocratic-oath-for-overuse-of-medical-care/#comments</comments>
		<pubDate>Sun, 18 Jul 2010 03:50:32 +0000</pubDate>
		<dc:creator>Jennifer Miller, Bioethicist</dc:creator>
				<category><![CDATA[Doctor-Patient Conflicts]]></category>
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		<description><![CDATA[

[wsj] Dr. Ezekiel Emanuel, health adviser to President Barack Obama, is under scrutiny. As a bioethicist, he has written extensively about who should get medical care, who should decide, and whose life is worth saving. Dr. Emanuel is part of a school of thought that redefines a physician’s duty, insisting that it includes working for [...]]]></description>
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<p>[<a href="http://online.wsj.com/article/SB10001424052970203706604574374463280098676.html">wsj</a>] Dr. Ezekiel Emanuel, health adviser to President Barack Obama, is under scrutiny. As a bioethicist, he has written extensively about who should get medical care, who should decide, and whose life is worth saving. Dr. Emanuel is part of a school of thought that redefines a physician’s duty, insisting that it includes working for the greater good of society instead of focusing only on a patient’s needs. Many physicians find that view dangerous, and most Americans are likely to agree.</p>
<p>The health bills being pushed through Congress put important decisions in the hands of presidential appointees like Dr. Emanuel. They will decide what insurance plans cover, how much leeway your doctor will have, and what seniors get under Medicare. Dr. Emanuel, brother of White House Chief of Staff Rahm Emanuel, has already been appointed to two key positions: health-policy adviser at the Office of Management and Budget and a member of the Federal Council on Comparative Effectiveness Research. He clearly will play a role guiding the White House&#8217;s health initiative.</p>
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<div style="width: 359px;"><img src="http://si.wsj.net/public/resources/images/ED-AK071A_mccau_NS_20090826172955.jpg" border="0" alt="[mccaughey]" hspace="0" width="359" height="157" /> <cite>&#8220;Principles for Allocation of Scarce Medical Interventions&#8221; The Lancet, January 31, 2009</cite>The Reaper Curve: Ezekiel Emanuel used the above chart in a Lancet article to illustrate the ages on which health spending should be focused.</div>
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<p>Dr. Emanuel says that health reform will not be pain free, and that the usual recommendations for cutting medical spending (often urged by the president) are mere window dressing. As he wrote in the Feb. 27, 2008, issue of the Journal of the American Medical Association (JAMA): &#8220;Vague promises of savings from cutting waste, enhancing prevention and wellness, installing electronic medical records and improving quality of care are merely &#8216;lipstick&#8217; cost control, more for show and public relations than for true change.&#8221;</p>
<p>True reform, he argues, must include redefining doctors&#8217; ethical obligations. In the June 18, 2008, issue of JAMA, Dr. Emanuel blames the Hippocratic Oath for the &#8220;overuse&#8221; of medical care: &#8220;Medical school education and post graduate education emphasize thoroughness,&#8221; he writes. &#8220;This culture is further reinforced by a unique understanding of professional obligations, specifically the Hippocratic Oath&#8217;s admonition to &#8216;use my power to help the sick to the best of my ability and judgment&#8217; as an imperative to do everything for the patient regardless of cost or effect on others.&#8221;</p>
<p>In numerous writings, Dr. Emanuel chastises physicians for thinking only about their own patient&#8217;s needs. He describes it as an intractable problem: &#8220;Patients were to receive whatever services they needed, regardless of its cost. Reasoning based on cost has been strenuously resisted; it violated the Hippocratic Oath, was associated with rationing, and derided as putting a price on life. . . . Indeed, many physicians were willing to lie to get patients what they needed from insurance companies that were trying to hold down costs.&#8221; (JAMA, May 16, 2007).</p>
<p>Of course, patients hope their doctors will have that single-minded devotion. But Dr. Emanuel believes doctors should serve two masters, the patient and society, and that medical students should be trained &#8220;to provide socially sustainable, cost-effective care.&#8221; One sign of progress he sees: &#8220;the progression in end-of-life care mentality from &#8216;do everything&#8217; to more palliative care shows that change in physician norms and practices is possible.&#8221; (JAMA, June 18, 2008).</p>
<p>&#8220;In the next decade every country will face very hard choices about how to allocate scarce medical resources. There is no consensus about what substantive principles should be used to establish priorities for allocations,&#8221; he wrote in the New England Journal of Medicine, Sept. 19, 2002. Yet Dr. Emanuel writes at length about who should set the rules, who should get care, and who should be at the back of the line.</p>
<p>&#8220;You can&#8217;t avoid these questions,&#8221; Dr. Emanuel said in an Aug. 16 Washington Post interview. &#8220;We had a big controversy in the United States when there was a limited number of dialysis machines. In Seattle, they appointed what they called a &#8216;God committee&#8217; to choose who should get it, and that committee was eventually abandoned. Society ended up paying the whole bill for dialysis instead of having people make those decisions.&#8221;<span id="more-1824"></span><!--more--></p>
<p><a name="U10139252926ALC"></a>Dr. Emanuel argues that to make such decisions, the focus cannot be only on the worth of the individual. He proposes adding the communitarian perspective to ensure that medical resources will be allocated in a way that keeps society going: &#8220;Substantively, it suggests services that promote the continuation of the polity—those that ensure healthy future generations, ensure development of practical reasoning skills, and ensure full and active participation by citizens in public deliberations—are to be socially guaranteed as basic. Covering services provided to individuals who are irreversibly prevented from being or becoming participating citizens are not basic, and should not be guaranteed. An obvious example is not guaranteeing health services to patients with dementia.&#8221; (Hastings Center Report, November-December, 1996)</p>
<p>In the Lancet, Jan. 31, 2009, Dr. Emanuel and co-authors presented a &#8220;complete lives system&#8221; for the allocation of very scarce resources, such as kidneys, vaccines, dialysis machines, intensive care beds, and others. &#8220;One maximizing strategy involves saving the most individual lives, and it has motivated policies on allocation of influenza vaccines and responses to bioterrorism. . . . Other things being equal, we should always save five lives rather than one.</p>
<p>&#8220;However, other things are rarely equal—whether to save one 20-year-old, who might live another 60 years, if saved, or three 70-year-olds, who could only live for another 10 years each—is unclear.&#8221; In fact, Dr. Emanuel makes a clear choice: &#8220;When implemented, the complete lives system produces a priority curve on which individuals aged roughly 15 and 40 years get the most substantial chance, whereas the youngest and oldest people get changes that are attenuated (see Dr. Emanuel&#8217;s chart nearby).</p>
<p>Dr. Emanuel concedes that his plan appears to discriminate against older people, but he explains: &#8220;Unlike allocation by sex or race, allocation by age is not invidious discrimination. . . . Treating 65 year olds differently because of stereotypes or falsehoods would be ageist; treating them differently because they have already had more life-years is not.&#8221;</p>
<p>The youngest are also put at the back of the line: &#8220;Adolescents have received substantial education and parental care, investments that will be wasted without a complete life. Infants, by contrast, have not yet received these investments. . . . As the legal philosopher Ronald Dworkin argues, &#8216;It is terrible when an infant dies, but worse, most people think, when a three-year-old dies and worse still when an adolescent does,&#8217; this argument is supported by empirical surveys.&#8221; (thelancet.com, Jan. 31, 2009).</p>
<p><a name="U101392529269WB"></a>To reduce health-insurance costs, Dr. Emanuel argues that insurance companies should pay for new treatments only when the evidence demonstrates that the drug will work for most patients. He says the &#8220;major contributor&#8221; to rapid increases in health spending is &#8220;the constant introduction of new medical technologies, including new drugs, devices, and procedures. . . . With very few exceptions, both public and private insurers in the United States cover and pay for any beneficial new technology without considering its cost. . . .&#8221; He writes that one drug &#8220;used to treat metastatic colon cancer, extends medial survival for an additional two to five months, at a cost of approximately $50,000 for an average course of therapy.&#8221; (JAMA, June 13, 2007).</p>
<p>Medians, of course, obscure the individual cases where the drug significantly extended or saved a life. Dr. Emanuel says the United States should erect a decision-making body similar to the United Kingdom&#8217;s rationing body—the National Institute for Health and Clinical Excellence (NICE)—to slow the adoption of new medications and set limits on how much will be paid to lengthen a life.</p>
<p>Dr. Emanuel&#8217;s assessment of American medical care is summed up in a Nov. 23, 2008, Washington Post op-ed he co-authored: &#8220;The United States is No. 1 in only one sense: the amount we shell out for health care. We have the most expensive system in the world per capita, but we lag behind many developed nations on virtually every health statistic you can name.&#8221;</p>
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<p><cite>Associated Press</cite></div>
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<p>This is untrue, though sadly it&#8217;s parroted at town-hall meetings across the country. Moreover, it&#8217;s an odd factual error coming from an oncologist. According to an August 2009 report from the National Bureau of Economic Research, patients diagnosed with cancer in the U.S. have a better chance of surviving the disease than anywhere else. The World Health Organization also rates the U.S. No. 1 out of 191 countries for responsiveness to the needs and choices of the individual patient. That attention to the individual is imperiled by Dr. Emanuel&#8217;s views.</p>
<p>Dr. Emanuel has fought for a government takeover of health care for over a decade. In 1993, he urged that President Bill Clinton impose a wage and price freeze on health care to force parties to the table. &#8220;The desire to be rid of the freeze will do much to concentrate the mind,&#8221; he wrote with another author in a Feb. 8, 1993, Washington Post op-ed. Now he recommends arm-twisting Chicago style. &#8220;Every favor to a constituency should be linked to support for the health-care reform agenda,&#8221; he wrote last Nov. 16 in the Health Care Watch Blog. &#8220;If the automakers want a bailout, then they and their suppliers have to agree to support and lobby for the administration&#8217;s health-reform effort.&#8221;</p>
<p>Is this what Americans want?</p>
<p><strong>Ms. McCaughey is chairman of the Committee to Reduce Infection Deaths and a former lieutenant governor of New York state.</strong></p>
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		<title>Helping Patients Face Death, She Fought to Live</title>
		<link>http://www.bioethicsinternational.org/blog/2010/04/05/helping-patients-face-death-she-fought-to-live/</link>
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		<pubDate>Mon, 05 Apr 2010 16:04:01 +0000</pubDate>
		<dc:creator>Jennifer Miller, Bioethicist</dc:creator>
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		<description><![CDATA[[nytimes] By the time she was 38, Dr. Desiree Pardi had become a leading practitioner in palliative care, one of the fastest-growing fields in medicine, counseling terminally ill patients on their choices.

She preached the gentle gospel of her profession, persuading patients to confront their illnesses and get their affairs in order and, above all, ensuring [...]]]></description>
			<content:encoded><![CDATA[<p>[<a href="http://www.nytimes.com/2010/04/04/health/04doctor.html?ref=general&amp;src=me&amp;pagewanted=all">nytimes</a>] By the time she was 38, Dr. Desiree Pardi had become a leading practitioner in palliative care, one of the fastest-growing fields in medicine, counseling terminally ill patients on their choices.</p>
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<p>She preached the gentle gospel of her profession, persuading patients to confront their illnesses and get their affairs in order and, above all, ensuring that their last weeks were not spent in unbearable pain. She was convinced that her own experience as a cancer survivor — the disease was first diagnosed when she was 31 — made her perfect for the job.</p>
<p>In 2008, while on vacation in Boston, she went to an emergency room with a fever. The next day, as the doctors began to understand the extent of her underlying cancer, “they asked me if I wanted palliative care to come and see me.”</p>
<p>She angrily refused. She had been telling other people to let go. But faced with that thought herself, at the age of 40, she wanted to fight on.</p>
<p>While she and her colleagues had been trained to talk about accepting death, and making it as comfortable as possible, she wanted to try treatments even if they were painful and offered only a 2 percent chance of survival. When the usual cycles of chemotherapy failed to slow the cancer, she found a doctor who would bombard her with more. She force-fed herself through a catheter and drank heavy milkshakes to keep up her weight.</p>
<p>Over the last decade, palliative care has become standard practice in hospitals across the country. Born out of a backlash against the highly medicalized death that had become prevalent in American hospitals, it stresses the relief of pain; thinking realistically about goals; and recognizing that, after a certain point, aggressive treatment may prevent patients from enjoying what life they had left.</p>
<p>Dr. Pardi had gone into the field because she thought her experience as a patient would make her a better doctor. Now she came face to face with all the ambiguities of death, and of her profession.</p>
<p>She remembered patients who complained to her that she did not know them well enough to recognize that they were stronger than she had thought. Now she discovered that she felt the same way about her own doctors. “I think they underestimated me,” she said in an interview last summer.<span id="more-1723"></span></p>
<p>She came to question the advice she had been giving. She thought about quitting. “I just decided I have to believe in what I’m saying,” she said.</p>
<p>Desiree Dougherty was the overachiever of a modest family, the daughter of a sheet-metal worker and foreman and a nurse in Rockland County, about 30 miles north of New York City. She was 5-foot-1, with a wide, warm smile, a cascade of blond hair, blue eyes and a figure that turned heads. She loved the color green; Pink Floyd; and sentimental books and movies, like Richard Bach’s novel “One,” about life’s choices, and “Pretty Woman.”</p>
<p>She met her future husband, Robert Pardi Jr., on her first day of college at Stony Brook University. She wanted to be a doctor; he wanted to make money. “She was a hippie chick with blue eyeliner,” her husband recalled of those carefree days, “a far cry from the Ann Taylor woman she would later become.”</p>
<p>She began an M.D.-Ph.D. program at Mount Sinai School of Medicine in Manhattan at age 24. In 1998, she was halfway through when she decided to take a few months off to join her husband in the United Arab Emirates, where he was working as a portfolio manager.</p>
<p><strong>‘It Was Bad News’</strong></p>
<p>She needed a routine health screening to obtain a visa to remain in the country, and opted for a more thorough exam. At the hospital in Dubai, she later explained, the custom was for doctors to talk to the husband, even when the wife was the patient.</p>
<p>So her husband came home early one afternoon, and instead of taking her out for Turkish coffee and sweets, sat her down and said, “I’m afraid it was bad news.” Further tests showed she had breast cancer. She had just turned 31.</p>
<p>She discovered that she liked having her husband act as a buffer between her and her doctors. From then on, even when she was in the United States, her doctors were told that they should communicate only with him.</p>
<p>She light-heartedly called herself “the Queen of Denial,” because she did not want to know anything about her disease. Her husband gave her just enough information to enable her to make decisions, and she always chose the most aggressive treatment. When a doctor in Dubai suggested she wait a bit before getting a mastectomy, she would not hear it. “Off, I want it off!” she insisted.</p>
<p>After the mastectomy and months of chemotherapy, she was told the cancer was gone. Determined to try anything that might prevent a recurrence, she underwent a stem-cell transplant in 1999, before they were found to be ineffective for breast cancer. She had her other breast removed protectively, though her double-D figure had been a source of pride.</p>
<p>She graduated from medical school in 2002, and was invited to appear on a segment of “The Oprah Winfrey Show” about people who had overcome obstacles and graduated. She was tongue-tied, but expressed her joy by throwing her arms around a startled Ms. Winfrey.</p>
<p>She did her residency at NewYork-Presbyterian/Weill Cornell Medical Center, where her mentor, Dr. Mark Pecker, said she had among the highest medical board scores he had ever seen.</p>
<p>Then what she had been dreading happened. During her residency, her cancer returned, invading her liver, and she was treated with drugs and surgery. Even after that, she was never fully in remission.</p>
<p>When it came time to choose a specialty, she was drawn to oncology and psychiatry, but thought palliative care was a good compromise. During one hospitalization at NewYork-Presbyterian, she had asked for intravenous Dilaudid, a strong opioid, for “10 out of 10” pain. She was labeled a “drug seeker” by the medical staff, she said — perhaps because she was asking for the drug by name — as if she were an addict craving crack. It was a revelation that would lead her toward palliative care: that treating the pain was as important as treating the sickness.</p>
<p>In 2006, Weill Cornell needed a medical director for its <a title="About the service." href="http://www.cornellmedicine.com/clinical_practices_and_divisions/geriatric_medicine/">new palliative care service,</a> and recruited her. Her inexperience and illness gave the hiring committee pause, said Dr. Ronald D. Adelman, co-chief of geriatrics, who became her supervisor. But she won them over with her enthusiasm.</p>
<p>She was sparing about sharing her own survival story with her patients; she needed to maintain some boundaries to do her job. Before she walked into a patient’s room, she said, she took a deep breath and reminded herself that “it has nothing to do with me.”</p>
<p>Some of her patients were celebrities. Many patients were older than she was, but some were disturbingly close to her in age.</p>
<p>About a year ago, she was asked to speak to a young woman who refused to accept that her life was limited. Dory Hottensen, a social worker who was there, later recounted how Dr. Pardi sat down and held the woman’s hand.</p>
<p>“I could see that Desiree had an unusual connection with her,” Ms. Hottensen said. Dr. Pardi spoke kindly, and “told her that she was not going to get better. In fact, she was going to die very soon. What did she want for her last days? How did she want to die?”</p>
<p>She persuaded the woman, who had cancer, to sign a do-not-resuscitate order. But when the woman died a few days later, Dr. Pardi cried. “I again couldn’t help but wonder what was going through her mind,” the social worker said.</p>
<p>Chemotherapy had become a regular part of Dr. Pardi’s life, scheduled every Friday. In between, she tried to cram in her work; trips to Bash Bish Falls in Massachusetts, where a friend had a country house; playing with her Yorkie; and being “Auntie Mame,” as she put it, to her niece Jessica.</p>
<p>In the summer of 2008, she and her husband took Jessica to Boston for a weekend. After a day of whale-watching and visiting the ducklings in the Public Garden, Dr. Pardi woke up with a high fever. Her husband called an ambulance.</p>
<p>She was admitted to Massachusetts General Hospital, and it soon became clear how far her cancer had spread.</p>
<p>A doctor asked if she would like a palliative care consultation. She was shocked; she interpreted the question to mean that she had been identified as someone who was dying, and she did not think of herself that way.</p>
<p>She had crossed to the other side of the mirror, from doctor to patient, and she no longer saw an orderly path to death.</p>
<p><strong>Big Macs and Nutella</strong></p>
<p>Months of constant chemotherapy followed. It kept her alive, but destroyed her appetite. Once an athletic 125 pounds, she had dropped to a sparrowlike 85. She lost her hair and wore a pixie-cut wig.</p>
<p>She and her husband tried to counter her weight loss. She snacked frequently. If she had an urge for a Big Mac, she would call her husband, who would rush to McDonald’s and deliver it to her office. He spent hours looking up high-calorie foods online, then made 1,100-calorie milkshakes laced with Brazil nuts, almond butter and Nutella spread. For several weeks, she received nutrition through a port in her chest while she slept.</p>
<p>Based on her symptoms, the standard medical advice, she said, would have been that she could no longer tolerate chemotherapy, that it “was going to become more of a burden than a help,” and that she should start to think about how she wanted to live out her remaining time.</p>
<p>But she did not want to stop even when she had exhausted standard chemotherapy regimens. So she turned elsewhere.</p>
<p>“What I realized was that if I was still being seen by an oncologist who would be affiliated with the hospital, they would have just said ‘go to hospice,’ ” she said in the interview last July. She was fortunate that she could afford treatments not fully covered by insurance, hundreds of thousands of dollars’ worth over the years.</p>
<p>During the interview, which took place a year after her trip to the Boston emergency room, she said she wanted to write to the doctors there to say, “Look here! I’m still here!”</p>
<p>She said she thought of all the times that her own patients had argued that she was underestimating their capacity to get better. “Then am I writing them off too soon?” she mused. “When they do say, ‘Well, you don’t know me. I can, blah-blah-blah,’ that’s what I said, too, in my mind. ‘You don’t know me.’ You don’t know my husband, for sure.”</p>
<p>She had gained back 27 pounds. “So I know it’s possible,” she said.</p>
<p>But she knew her own colleagues would tell her that she was not really getting better. “I’ve said it myself many times to patients,” she said.</p>
<p>She feared that she could no longer, in good conscience, tell patients they were going to die when she refused to accept that her own death might be near. “And so I felt like, I feel like, if I now go and tell a patient what I used to tell patients, or what they would have told me, then I’m being hypocritical.”</p>
<p>At one point, she tripped getting into a taxi. Instead of taking that as a sign that she should slow down, she signed up to be a New York City walking-tour guide.</p>
<p>In August, she and her husband walked on the beach at Coney Island. She could not swim because of the feeding line attached to the port in her chest. “She told me she wasn’t ready to die,” Mr. Pardi recalled.</p>
<p>But a week later, she was in the hospital, not because she was ready to die, but for pain from constipation. She chose Mount Sinai, avoiding NewYork-Presbyterian because she did not want the humiliation of being treated by her colleagues and students.</p>
<p>She refused to be treated by the renowned palliative care specialists at Mount Sinai whom she knew professionally, but her husband and her best friend, also a doctor, persuaded her to allow a palliative care doctor to oversee her care, with a team of gastroenterologists. She settled on a young doctor she had never met, Betty Lim.</p>
<p>After very painful enemas and a colonoscopy, the team of doctors suspected that inoperable tumors were adding to the blockage. Yet Dr. Pardi demanded more enemas.</p>
<p>Dr. Lim believed it was her role to listen to her patient’s wishes. “Definitely, we did things that we knew would have very small chances of working,” she said, until finally she and her colleagues decided that further treatment could perforate Dr. Pardi’s bowel. “I don’t think, at least during the time when she was conscious, she ever got to the point where she was like, O.K., this is it.”</p>
<p>“She said, you know, ‘I can suck it up,’ ” Dr. Lim recalled. “Anything that gave her another chance to get back to what she was doing before.”</p>
<p>She needed an extraordinary amount of pain medication. “It wasn’t working, because her disease burden was so great,” Dr. Lim said.</p>
<p>She was also being given sedatives to help her rest, but one day, she flung herself out of bed, ripping out tubes, because of a jolt of pain in her bowel.</p>
<p>Doctors gave Dr. Pardi stronger sedatives. As her body shut down, she began to grow confused and lose consciousness. Mr. Pardi, who stayed at her bedside with her mother, said he and his wife had talked in detail about her wishes. He had no qualms about sedating her, about taking away artificial nutrition and hydration, or about letting her kidneys shut down. Even though she desperately wanted to live, she had said that when it was her time, she did not want to be in pain.</p>
<p>“We had talked about how in some situations, family members want to bring you to consciousness to say goodbye, but that is not for your benefit,” he said. “God, I would have loved to say goodbye. But that was her wish. She never wanted to open her eyes and see people sad around the bed.”</p>
<p>She was 41 when she died in her husband’s arms on Sept. 6, after two weeks in the hospital, seven years as a doctor and nearly 11 years with breast cancer. Her eyes opened in the moment before she died, her husband said, but she seemed unable to see anything.</p>
<p><strong>‘She Wasn’t Ready’</strong></p>
<p>She died before many of her colleagues could say goodbye, and they grappled with her death.</p>
<p>Dr. Pecker, her mentor, said he would have reassured her that she was not betraying her principles by refusing to go to hospice. “I think that how you want to live, and what you choose to do is different than what you might recommend to someone else,” he said.</p>
<p>Her supervisor, Dr. Adelman, sympathized with her internal struggle. “Here she was, this really young, passionate woman who really had a calling,” he said. “She wasn’t ready.”</p>
<p>Some doctors were less understanding. “After her story came out, they would get very frustrated and say, ‘Oh, she was in denial,’ ” Dr. Lim said.</p>
<p>She died without ever learning the extent of her disease. Her husband said that she had tumors in both lungs, her liver, the lining of her small intestines, her colon and her bones.</p>
<p>Dr. Lim said doctors at Massachusetts General might have been right in offering palliative care a year earlier. “She passed away in unfortunately quite a painful scenario,” she said. “Many people would not have chosen that route.”</p>
<p>Yet she respected Dr. Pardi’s choice and was not ready to write off her stubbornness as denial. “She was very much in control of the situation,” Dr. Lim said.</p>
<p>Dr. Lim attempted, in her own mind, to reconcile Desiree Pardi the palliative care doctor who believed in a peaceful death, with Desiree Pardi the patient who wanted to keep fighting.</p>
<p>Dr. Lim said she believed that “somewhere deep inside, she knew this was not fixable.” But Dr. Pardi “knew exactly how much she was willing to endure,” Dr. Lim added. “And she was able to endure a lot.”</p>
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<h6>A version of this article appeared in print on April 4, 2010, on page A1 of the New York edition.</h6>
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