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11/13/2017

Isaiah Haastrup – a "Charlie Gard" Legal Battle

As might have been expected, commentators are now using "Charlie Gard" as an adjective to describe medical futility conflicts between parents and clinicians. One of the latest such cases involves 8-month-old Isaiah Haastrup. Isaiah was both in Februar...

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This entry was posted in Health Care and tagged . Posted by Thaddeus Mason Pope, JD, PhD. Bookmark the permalink.

11/12/2017

Medical Advance Directive: An Emphatic "NO!" to Dementia




Norman Cantor, a lawyer and Professor of Law at Rutgers University School of Law wrote a thoughtful article about the medical Advance Directive in the Harvard Law School "Bill of Health" blog


and explaining why he is revising his own medical Advance Directive to instruct his physicians and caretakers to allow him to die if he had developed a dementia "upon reaching a degree of permanent mental dysfunction that I deem to be intolerably demeaning.  For me, this means mental deterioration to a point when I can no longer read and understand written material such as a newspaper or financial records such as a checkbook"


Read his entire presentation at the Harvard Law blog link above and then return to present your views on adding profound mental deterioration to the list of physical illnesses which are irreversible and can be highly distressful to the patient and his family's lives and which he does not want to experience or have his family experience further and if he should face a treatable but serious life threatening condition, he should be allowed to die.


Hopefully, all of my blog readers have their own medical Advance Directive written to designate  a  surrogate to attend to their wishes for treatment of a potentially fatal illness when it occurs. If not, as your physician moderator of this bioethics blog, I would strongly recommend it be created and available for your physicians later to read and observe your directive.


  With Professor Cantor's permission, his Revised Advance Directive is reproduced below. ..Maurice..                                                       
My Revised Advance Directive

     I have witnessed the ravages that Alzheimer's disease and similar progressive dementias produce.  I wish to be allowed to die upon reaching a degree of permanent mental dysfunction that I deem to be intolerably demeaning.  For me, this means mental deterioration to a point when I can no longer read and understand written material such as a newspaper or financial records such as a checkbook.       

     This wish to hasten my post-competence demise is not based on prospective suffering or distress, but rather on my personal vision of intolerable indignity and degradation associated with cognitive dysfunction.  For me, it is critical to shape the post-mortem recollections of my loved ones and to preserve the lifetime image as a vital, critically thinking individual that I have strived to cultivate.  In addition, it is important to me to avoid being an emotional, physical, or financial burden on my family and friends, even if they would willingly assume such burdens. 

    I fully understand that my determination to avoid prolonged, progressive debilitation could prompt my demise even though I might appear content in my debilitated condition.  I am exercising my prerogatives of self-determination and bodily integrity to shape my lifetime narrative, including my dying process, in accord with my strong aversions to mental dysfunction and to dependence on others. 

     My determination not to prolong my life at the described point of debilitation includes rejection of any and all life-sustaining means.  This includes simplistic medical interventions such as antibiotics, blood transfusions, and antiarrythmics, as well as more complex interventions like CPR, mechanical ventilation, dialysis, and artificial nutrition and hydration.  Indeed, if my dementia or any other affliction has produced inability or unwillingness to feed myself – for example, because of swallowing difficulties, or other eating disorders, or just indifference to eating -- I instruct that my caregivers refrain from hand feeding unless I appear receptive to eating and drinking (show signs of enjoyment or positive anticipation).  If I am indifferent or resistant to hand feeding, I do not want to be cajoled, harassed, or in any way impelled to eat or drink.   

     The only limitation on my advance rejection of life-sustaining medical intervention is adherence to humane treatment.  That is, I have no desire to subject my future incompetent persona to a torturous or agonizing dying process.  I presume that palliative steps -- including medication for pain, anxiety, or agitation -- will be taken to ease my dying process. 


     The question may arise as to whether I have had a change of mind and revoked my advance directive.  My wish is that no revocation be found unless I do so while still capable of a considered choice, including appreciation of all the major elements involved.  I urge my decision-making agents to avoid the temptation of manipulating my future, incompetent persona to contradict or alter my advance instructions.  And I direct that my original instructions be honored absent an aware, considered change of mind (as opposed to uncomprehending expressions by my demented persona). 


Graphic: Through Google Images. "5th Dementia"PAINTING BY JEFF BOWERING Saatchi Art

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This entry was posted in Health Care and tagged . Posted by Maurice Bernstein, M.D.. Bookmark the permalink.

11/12/2017

2017 Publications by Thaddeus Mason Pope

As the end of the year approaches, I take stock of what I published this year.   Hopefully, a few more pieces will come out over the next few weeks. But even without those, I count:  3 law review articles 2 book updates 1 book ...

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This entry was posted in Health Care and tagged . Posted by Thaddeus Mason Pope, JD, PhD. Bookmark the permalink.

11/11/2017

Let’s Talk about Death and Dying (animated video)

Here is a nice new animated video on discussing death from Age UK, "Let's Talk about Death and Dying."

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This entry was posted in Health Care and tagged . Posted by Thaddeus Mason Pope, JD, PhD. Bookmark the permalink.

11/10/2017

Why Investing in Better Primary Care Failed to Save Money

Shutterstock We have a huge healthcare problem in the U.S., spending way more than other wealthy countries, expenses that not only burden state and federal governments, but that also take money out of American pockets. Some people hope that better … Continue reading

The post Why Investing in Better Primary Care Failed to Save Money appeared first on PeterUbel.com.

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11/10/2017

Can we talk about gun violence in America?

A report in the New York Times shows the connection between the prevalence of guns in the United States and mass shootings. No country in the world can match the United States in the total number of guns owned by citizens. To put this in context, “Americans make up about 4.4 percent of the global population but own 42 percent of the world’s guns.” There are about 270 million guns in circulation in the United States and between 1966 to 2012 there were 90 mass shooters, no other country in the world has more than 48, million guns in circulation or 18 mass shooters. In short, the problem of mass shootings is basically an American problem because we have so many guns available for some people to use in very harmful ways.

Critics may cite other variables that could explain the inordinately high rate of mass shootings in the United States. Trump recently said of the recent mass shooting in Sutherland Springs, Texas:

“Mental health is your problem here. This was a very, based on preliminary reports, this was a very deranged individual, a lot of problems over a long period of time. We have a lot of mental health problems in our country, as do other countries."

As is often the case with his statements, the facts do not support it. About 18% of the population have mental health problems and the vast majority are not violent and are not involved in mass shoots, though a few are. Other possible variables, such as time spent playing video games, the level of racial diversity, immigration, and even crime rate, also can be ruled out statistically as being a significant factor in mass shootings—there is no statistical evidence that any of these variables account for the high prevalence of mass shootings, as well as homicides, in the United States. For example, we learn that a New Yorker is as likely as a Londoner to be robbed, but a New Yorker is over 50 times likely to be killed in the process.

There simply are no other variables other than the number of guns in circulation that would account for the uniquely high frequency of these horrific mass shootings, with which we have become all too familiar. As the report from the New York Times states:

“More gun ownership corresponds with more gun murders across virtually every axis: among developed countries, among American states, among American towns and cities and when controlling for crime rates.”

If it is the case that is there is a correlation between the number of guns available to citizens in a society and the number of mass shootings that injure and kill innocent people every year, as a matter of common sense, it seems to follow that the solution would be to reduce the number of guns in circulation. In fact this common sense perspective has been borne out by empirical research as stated in the New York Times report:

…(G)un control legislation tends to reduce gun murders, according to a recent analysis of 130 studies from 10 countries.

 The facts seem relatively clear both about the root cause of the problem and how to ameliorate it. So why aren’t people—including citizen voters and politicians—paying attention and responding? This question gets us into a whole other topic, which I don’t want to explore in any depth now. But I will say it seems clear that since the 1980s a powerful gun culture in America cultivated primarily by the zealotry, funds, and organization, of the National Rifle Association (NRA). This culture has been successful in inspiring its followers to take an expansive view of the 2nd Amendment, to see the government as a potential threat to its fundamental right of gun ownership, and live in perpetual fear that politicians will take away their guns and their right to own them. Because of the intense advocacy that puts critical pressure on key politicians, in America the NRA gun culture representing a minority view can bully its way to keeping in place laws that ensure easy access to guns, including deadly assault weapons and large clip magazines.

The fact that most Americans, including many members of the NRA, are thwarted in their desire to see sensible solutions to gun regulation is what is most concerning. According to a Pew Research report, 89% of both gun and non-gun owners favor the mentally ill from purchasing guns—which makes Trump’s repeal of a rule that blocks gun sales to certain mentally ill people, especially in light of his recent statements, all the more troublesome. Moreover, even on issues like barring gun purchases for people on no-fly or watch lists, creating a federal data base to track gun sales, banning assault-style weapons and high capacity magazines, receive two-thirds support from the public. Sadly, in America currently majority views about this and other vitally important public policy issues don’t translate into change in policy.

What is the solution? It seems evident that the majority of people in America with sensible views that are not being heard must take to necessary measures to make themselves heard. Given the trajectory of violence from mass shootings and the urgency of protecting innocent lives, it’s time for new culture of resistance to the NRA and the politicians that support them to find reasonable ways to regulate guns in America.

 

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and a Graduate Certificate in Clinical Ethics. For more information on AMBI's online graduate programs, please visit our website.  

 

 

 

 

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This entry was posted in Health Care, Politics and tagged , , , . Posted by Bioethics Today. Bookmark the permalink.

11/10/2017

Can we talk about gun violence in America?

A report in the New York Times shows the connection between the prevalence of guns in the United States and mass shootings. No country in the world can match the United States in the total number of guns owned by citizens. To put this in context, “Americans make up about 4.4 percent of the global population but own 42 percent of the world’s guns.” There are about 270 million guns in circulation in the United States and between 1966 to 2012 there were 90 mass shooters, no other country in the world has more than 48, million guns in circulation or 18 mass shooters. In short, the problem of mass shootings is basically an American problem because we have so many guns available for some people to use in very harmful ways.

Critics may cite other variables that could explain the inordinately high rate of mass shootings in the United States. Trump recently said of the recent mass shooting in Sutherland Springs, Texas:

“Mental health is your problem here. This was a very, based on preliminary reports, this was a very deranged individual, a lot of problems over a long period of time. We have a lot of mental health problems in our country, as do other countries."

As is often the case with his statements, the facts do not support it. About 18% of the population have mental health problems and the vast majority are not violent and are not involved in mass shoots, though a few are. Other possible variables, such as time spent playing video games, the level of racial diversity, immigration, and even crime rate, also can be ruled out statistically as being a significant factor in mass shootings—there is no statistical evidence that any of these variables account for the high prevalence of mass shootings, as well as homicides, in the United States. For example, we learn that a New Yorker is as likely as a Londoner to be robbed, but a New Yorker is over 50 times likely to be killed in the process.

There simply are no other variables other than the number of guns in circulation that would account for the uniquely high frequency of these horrific mass shootings, with which we have become all too familiar. As the report from the New York Times states:

“More gun ownership corresponds with more gun murders across virtually every axis: among developed countries, among American states, among American towns and cities and when controlling for crime rates.”

If it is the case that is there is a correlation between the number of guns available to citizens in a society and the number of mass shootings that injure and kill innocent people every year, as a matter of common sense, it seems to follow that the solution would be to reduce the number of guns in circulation. In fact this common sense perspective has been borne out by empirical research as stated in the New York Times report:

…(G)un control legislation tends to reduce gun murders, according to a recent analysis of 130 studies from 10 countries.

 The facts seem relatively clear both about the root cause of the problem and how to ameliorate it. So why aren’t people—including citizen voters and politicians—paying attention and responding? This question gets us into a whole other topic, which I don’t want to explore in any depth now. But I will say it seems clear that since the 1980s a powerful gun culture in America cultivated primarily by the zealotry, funds, and organization, of the National Rifle Association (NRA). This culture has been successful in inspiring its followers to take an expansive view of the 2nd Amendment, to see the government as a potential threat to its fundamental right of gun ownership, and live in perpetual fear that politicians will take away their guns and their right to own them. Because of the intense advocacy that puts critical pressure on key politicians, in America the NRA gun culture representing a minority view can bully its way to keeping in place laws that ensure easy access to guns, including deadly assault weapons and large clip magazines.

The fact that most Americans, including many members of the NRA, are thwarted in their desire to see sensible solutions to gun regulation is what is most concerning. According to a Pew Research report, 89% of both gun and non-gun owners favor the mentally ill from purchasing guns—which makes Trump’s repeal of a rule that blocks gun sales to certain mentally ill people, especially in light of his recent statements, all the more troublesome. Moreover, even on issues like barring gun purchases for people on no-fly or watch lists, creating a federal data base to track gun sales, banning assault-style weapons and high capacity magazines, receive two-thirds support from the public. Sadly, in America currently majority views about this and other vitally important public policy issues don’t translate into change in policy.

What is the solution? It seems evident that the majority of people in America with sensible views that are not being heard must take to necessary measures to make themselves heard. Given the trajectory of violence from mass shootings and the urgency of protecting innocent lives, it’s time for new culture of resistance to the NRA and the politicians that support them to find reasonable ways to regulate guns in America.

 

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and a Graduate Certificate in Clinical Ethics. For more information on AMBI's online graduate programs, please visit our website.  

 

 

 

 

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This entry was posted in Health Care, Politics and tagged , , , . Posted by Bioethics Today. Bookmark the permalink.

11/10/2017

Refocusing professional standards and leadership for patient empowerment

This post is written in response to Ubel, Scherr and Fagerlin’s target article, “Empowerment Failure: How Shortcomings in Physician Communication Unwittingly Undermine Patient Autonomy” published in the November 2017 issue of The American Journal of Bioethics.


by Stuart W Grande, PhD, MPA and William A. Nelson, PhD

Overcoming barriers to successful patient empowerment at the point of care is critical to improved patient-provider communications and ultimately to the realization of the dream of preference-sensitive care. In their recent article, “Empowerment Failure: How Shortcomings in Physician Communication Unwittingly Undermine Patient Autonomy,” Ubel and colleagues provide a provocative and engaging commentary on the “failures” of physicians to cultivate an organizational culture and clinical profession where true co-production can occur.…

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This entry was posted in Cultural, Featured Posts, Health Care, Justice, OPC, professional ethics and tagged , . Posted by Blog Editor. Bookmark the permalink.

11/10/2017

Constitutional Challenge to Texas Advance Directives Act – Now on Appeal

On October 13, 2017, the Harris County District Court dismissed a constitutional due process challenge to the Texas Advance Directives Act.  This week, the plaintiffs appealed that Order to the Court of Appeals in Houston.

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This entry was posted in Health Care and tagged . Posted by Thaddeus Mason Pope, JD, PhD. Bookmark the permalink.

11/10/2017

There’s gene therapy and there’s gene therapy

I’ve seen a number of different things described in the general press as “gene therapy.” But they are indeed different.  It’s important to be specific. For one, there’s the situation where a set of mature human cells are obtained from the person to be treated and genetically altered outside the body to make them into a potentially useful treatment, then re-administered (by vein) to the... // Read More »

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This entry was posted in Genetics, Health Care and tagged , , , , . Posted by Jon Holmlund. Bookmark the permalink.