File on 4, BBC Radio 4, 5pm, Sunday 29 November 2009. Available now on iPlayer (for an unlimited time), and as a podcast (until Tuesday 1st December at 8pm). A transcript should be available in mid-December.

“With a national shortage of organ donors, the dilemma faced by surgeons is whether a transplant with what are called “marginal” organs from donors who could be higher risk, such as the elderly or patients with a history of cancer or drug abuse, is better than leaving a patient on a waiting list where they could die before a suitable donor can be found.

Figures disclosed to File on 4 reveal that in 1998 13% of donor organs were “marginal”, 10 years later this percentage had doubled.

Everyone in the transplant field who has talked to the programme agreed the quality of organs from deceased donors was declining, accepting this meant added risks connected to the hearts, lungs, livers and kidneys used for transplants.

As one doctor put it, this is a calculated gamble.

Arising out of this comes the issue of informed consent. Who should have the final say whether an organ from a dead donor should be used, the professional or the patient?”

More details are available on the BBC News website.

December 2nd, 9.00am – 4pm
Location: Victor Salvi room, Millennium Centre, Cardiff Bay, Cardiff

Hosted by: ESRC Centre for Economic and Social Aspects of Genomics (Cesagen)

The ways in which technologies will evolve and touch the lives of patients in different contexts will depend on the numerous and complex ways in which ‘health systems’ interact with, shape and are in turn influenced by new science and technology. Whilst technologies and product innovation are developed in firms and research institutes that operate globally, health systems are largely nationally based. This means that new technologies, drugs and treatments may reach various sets of patients, doctors and other consumers in radically different ways.

It is also the case that there tends to be a profound gulf between researchers working on understanding innovation in life sciences and researchers of different health systems.  Thus understandings of the ways in which health systems and health innovation interact with each other are poorly understood. The seminars organised as part of this workstream aim to address this gap.

Speakers:

Dr. Nina Hallowell, Centre for Population Health Sciences, Edinburgh University

Professor Alan Horwitz, Sociology, Rutgers University

Professor Anneke Lucassen, School of Medicine, University of Southampton

Professor Michael Owen, Director of the MRC Centre for Neuropsychiatric Genetics and Genomics, Cardiff University

Dr. Katherine Payne, School of Medicine, Manchester University.

Please contact Adam Hedgecoe (hedgecoeam@cardiff.ac.uk) to confirm a place.

Brussels, Belgium, Nov 24, 2009 / 03:55 am (CNA).- A paralyzed man who was misdiagnosed as comatose for 23 years is again communicating with the world after new brain scans showed he was in fact conscious. A Catholic bioethics expert suggests the case shows the wisdom of Catholic teaching on the duty to provide sustenance for those believed to be comatose.

Rom Houben, a former martial arts enthusiast, was paralyzed in a 1983 car crash. The Daily Mail reports that his doctors in Zolder, Belgium used the internationally accepted Glasgow Coma Scale to assess his physical and verbal responses, but each time he was graded incorrectly.

“I screamed, but there was nothing to hear,” said Houben, who after therapy now communicates with the aid of a computer. “I dreamed myself away.”

Three years ago, new technology scans showed Houben’s brain was still functioning almost completely normally. His case has just been reported in a scientific paper by the doctor who discovered the mistake, neurological expert Dr. Steven Laureys of the Coma Science Group and Department of Neurology at Liege University Hospital.

Laureys’ re-evaluation of Houben showed that the patient had lost control of his body but was still fully aware of what was happening.

“Frustration is too small a word to describe what I felt,” Houben said. “I shall never forget the day when they discovered what was truly wrong with me – it was my second birth.”

Read the article

Someone has saved these two search results using SearchMedica’s new saved searches feature. The first confirms that mutations in the glucocerebrosidase gene involved in Gaucher disease are also associated with Parkinson disease. The second reports on a new plant-derived replacement form of the enzyme that is well tolerated and less expensive than a commercial version manufactured in mammalian cell lines.

RESULT: Complete screening for glucocerebrosidase mutations in Parkinson’s disease patients from Portugal
Neurobiology of Aging (PubMed) | Sep 1, 2009

RESULT: A Plant-Derived Recombinant Human Glucocerebrosidase Enzyme—A Preclinical and Phase I Investigation
PLoS One | March 11, 2009

An even more recent multicenter study coordinated by the National Human Genome Research Institute confirms a strong association between this gene and Parkinson disease.

RESULT: Multicenter Analysis of Glucocerebrosidase Mutations in Parkinson’s Disease
New England Journal of Medicine | Oct 22, 2009

Search:  glucocerebrosidase Parkinson’s

Another search, using the name of the manufacturer, reveals that the new drug has already been approved by the FDA to treat Gaucher disease, even though phase 3 trials are still under way. (We see no evidence using the option “The entire Web” of any current efforts to test the drug, velaglucerase, for Parkinson disease.)

RESULT: New Gaucher Drug Goes to Market During Shortage
MedPage Today | Sep 3, 2009

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SEARCH TIP: Searches colleagues have tagged

A box at the top of the left column shows results that other people have been saving on SearchMedica. This allows you for the first time to see for youreself what others have been searching on, without waiting for the next edition of Medical Search Tips.

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OTHER RECENT SEARCHES ON SEARCHMEDICA

Search: hypertrophic cardiomyopathy

RESULT: Implications of Hypertrophic Cardiomyopathy Transmitted by Sperm Donation
JAMA | Oct 21, 2009

An investigation that identified cardiomyopathy among 9 of 24 children fathered by the same sperm donor has raised new questions about genetic testing that ought to be required among individuals who wish to donate gametes for infertility treatment. It also may have interesting implications for physicians inquiring into the medical histories behind unusual conditions.

Search: alcohol disease

RESULT: Functional genomic and epidemiological studies reveal novel genes regulating cholesterol metabolism
Genome Medicine | Oct 27, 2009

New methods in genetic research are providing a powerful way to explore the heredity of cardiovascular disease as it relates to cholesterol metabolism. (But what on earth does that have to do with this search term?)

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SEARCH TIP: Let’s get one thing perfectly clear

Why do articles about cholesterol turn up with the search term “alcohol disease”? It’s not quite a mystery. Strictly speaking, cholesterol, which possesses a hydroxyl group, is an alcohol. But it certainly should not be turning up as a synonym for “alcohol” in medical searches! We’ve taken steps to correct that.

Setting that aside, this search term is ambiguous in any case.

Does this person want information about alcohol-associated diseases? Using that more specific search term generates a much more relevant list of results.

Perhaps instead, the intent was to find articles about alcoholism as a disease. Putting that phrase inside quotation marks and using it as a query delivers 29 articles pertinent to that topic.

Search: “alcoholism as disease”

A chilling sequence of searches last week inquired into research to prevent deaths during seclusion and restraint. (The first query was actually “deaths during restraint,” but we modified that to “restraint death” for better results.) The newest study, from the University of Miami, reports a “reliable forensic tool for identifying the excited delirium syndrome at autopsy.”

RESULT: Brain biomarkers for identifying excited delirium as a cause of sudden death
Forensic Science International (PubMed) | Sep 10, 2009

The following result, from another forensic journal, reports that psychiatric patients may also die of thromboembolism while physically restrained for long periods. The deceased in this small study had no history of thrombotic risk factors; all had been restrained for several days.

RESULT: Fatal thromboembolic disease: a risk in physically restrained psychiatric patients
Journal of Forensic and Legal Medicine | Jul 1, 2009

Search: restraint death

There were also several searches related to reducing the risk of death during restraint. The query “pulse oximetry during restraint” showed that during the past  two years, despite intense regulatory focus on reducing this risk, there have been no new studies of this simple method that can prevent death. The article below is the most recent result on the subject.

RESULT: Portable Pulse Oximeter Use During Patient Restraint
Psychiatric Times | Oct 1, 2007

Search: pulse oximetry during restraint

There may be brain biomarkers for it, but does “excited delirium” actually exist? A search using that phrase as a search term locates an article that addresses the question, with perspectives from both psychiatrists and police. The lead author of the biomarker study is quoted at length.

RESULT: A knee in the neck of excited delirium
Canadian Medical Association Journal | Mar 11, 2008

Search: excited delirium
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SEARCH TIP: On persistence

Our records show four distinct but related searches in the Mental/Nervous tab this week that include the term “restraint”:

• deaths during restraint
• use of pulse oximetry during restraint
• physical monitoring of a patient during restraint
• reducing risk associated with seclusion and restraint

The results were quite different for each, yielding a rich variety of information on the topic.

Another approach is to use search terms drawn from a phrase in one of the results. Trying the search term “excited delirium,” the topic of the first result above, revealed a diagnostic controversy that adds another perspective to the topic.

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OTHER RECENT SEARCHES ON SEARCHMEDICA

Search: catatonia

RESULT: The Catatonia Syndrome: Forgotten But Not Gone
Archives of General Psychiatry | Nov 1, 2009

Although it is often masked by other disorders, catatonia is easily recognized and treated, according to the authors of this review. Despite a widespread assumption that it is a form of psychosis, catatonia is not confined to schizophrenia, they write.

Search: verbal and mental abuse

RESULT: Understanding the Dynamics of Abusive Relationships
Psychiatric Times | Sep 1, 1996

Someone sent feedback to commend this 13-year-old review that describes the dynamics of abusive relationships in common language. It draws inferences in part from testimony during the trial of O.J. Simpson.

Search: depression practice parameter adult

RESULT: Practice Parameter for Psychiatric Consultation to Schools
Guidelines.gov | Oct 5, 2009

This 2004 guideline from the American Academy of Child and Adolescent Psychiatry is both misdated and contrary to the search term specification of “adult.” What went wrong, and how can this search be improved?

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SEARCH TIP:  Practice Guidelines

As to the publication date, if you scroll to the bottom of the guideline you’ll see the words “Date Modified 11/9/09” (or perhaps a later date by the time you read this). Unfortunately, that trumps earlier dates on the same page. As a result of this problem, listed publication dates on results from the National Guideline Clearinghouse are often erroneous.

However, it’s easy to eliminate guidelines that mention adults. Use the term “NOT” in the query, which allows you to exclude irrelevant terms.

We found guidelines about depression in adults by restricting the search to the Practice Guidelines article category and using the query depression NOT children NOT adolescents.

The Princeton University Center for Human Values invites applications for the Harold T. Shapiro Postdoctoral Fellowship in Bioethics. The Shapiro Fellowship supports outstanding scholars studying ethical issues arising from developments in medicine or the biological sciences. The search committee particularly encourages proposals focusing on problems of practical importance that have broader theoretical interest.

The Harold T. Shapiro Postdoctoral Fellowship in Bioethics was created in 2002 to provide an opportunity for an outstanding scholar to spend from one to three years at Princeton to further their scholarship and participate in the University’s teaching program.

The postdoc will spend the term of the appointment in residence at Princeton conducting research and teaching the equivalent of one course each year. The postdoc will participate in the Ira W. DeCamp Seminar in Bioethics and will be invited to participate in the other activities of the University Center for Human Values.

Qualifications
Applicants must have completed all the requirements for the Ph.D., M.D., or other equivalent doctoral degree by September 1, 2010. Applications will be evaluated on the basis of the applicant’s previous accomplishments and the promise of their proposed research project in bioethics. Please note that an applicant may have a background in any area of ethical studies, not necessarily in bioethics. However, the proposed research plan should be related to the field of bioethics. The capacity to contribute to the University’s teaching program will also be taken into account.

Term of Appointment
The term of the fellowship is one year, beginning September 1, 2010, with the possibility of extension for up to two further years. Princeton University offers competitive salary and employee benefits.

How to Apply
Applicants should submit all of the following materials by December 1, 2009, via our online application system:
A curriculum vitae;
A research proposal (not to exceed 1,500 words);
A scholarly paper (not to exceed 50 pages) representing the applicant’s scholarly achievement or potential;
Two confidential letters of recommendation, commenting specifically about the applicant’s qualifications for the proposed research project;
Transcripts covering all graduate-level work (this may be sent via hard copy under separate cover).

The Selection Committee begins reviewing applications immediately and incomplete applications may be at a disadvantage.

For questions or more information, please contact the University Center for Human Values at +1 609 258 4798 or values@princeton.edu.

Reading the article “Ashley Revisited: A Response to the Critics” written by Dr. Diekema and Dr. Fost and published in AJOB in April, I find same dishonesties repeated from the initial 2006 paper by Dr. Gunther and Dr. Diekema. I also find new pieces of information revealed for the first time and newly altered explanation. But it is quite interesting that the new information and explanation do not always coincide with their previous explanations and as a result, rather seem to have ended up in betraying or confirming their deception after all.

(I pointed out some of the mysteries and questions about the initial 2006 paper here by the way. )

 1. 　reasons and motivations

 The authors are extremely dishonest again in explaining the parents’ motivations and the priorities among them. As I have already pointed out here,  Ashley’s father repeatedly denied prolonging home care as any part of the reasons for growth attenuation. The parents did not have any “fear” that it would be impossible for them to care their daughter at home as she grew bigger. They were so sure that they would keep her at home no matter what that there was no need to “fear”. But the doctors wrote they had had the “fear” in the initial paper and then repeated it again this time.

Bed sore prevention was suggested by a doctor as a benefit from growth attenuation only “recently,” Ashley’s father wrote in his blog at the beginning of 2007, years after the request was reviewed by the committee. But Dr. Diekema and Dr. Fost say that it was part of the parents’ reasons from the beginning.

The authors didn’t hide mastectomy this time. It has long been out in the open thanks to the father’s blog and there’s no point in hiding any more. But the authors failed to include the parents’ “fear” that big breasts would sexualize Ashley to caregivers in their motivations.

What is most interesting in regard to reasons and motivations, however, is the big change in the reasons for hysterectomy. In the 2006 paper, Dr. Diekema emphasized that it had been “prophylactic” hysterectomy, necessary to prevent adverse effects from the hormone treatment. He said that it would bring some advantages “as an adjunct to high-dose estrogen treatment,” implying that the growth attenuation had been the main thing. He now says it was done to prevent pregnancy and menstrual discomfort. So saying, he has admitted that hysterectomy was done for its own reasons, independent from the growth attenuation therapy. At the same time he has also admitted dishonesty in his explanation of hysterectomy in his 2006 paper.

2.  the length of the hormone treatment

Dr. Diekema wrote “she is now a little more than a year into therapy” in the initial paper that was published in October 2006. That would put the starting point of the hormone therapy some time in the late summer of 2005. But when Ashley’s father started his blog on the 2nd of January of 2007, he wrote, “We’ve just completed this treatment after two and a half years.” That would put the starting point some time in the summer of 2004. There was a gap by nearly one year.

Now in the new article, Dr. Diekema writes “Ashley underwent 2-1/2 years of high-dose estrogen treatment.” With this correction, he has admitted the father’s blog was correct and his information in his 2006 paper was not. But where is his explanation? Isn’t he responsible to fully explain why he reported the treatment period one year shorter initially? Otherwise, it looks as though the doctors had felt uncomfortable to go public with the true length of the treatment, lied in their paper and hoped that they could get away with it. They had no idea at that point that Ashley’s father would start a blog and reveal everything in the future.

3.  the size of the committee

There was no specific information in the initial 2006 paper about the special ethics committee that reviewed the Ashley case.  If you have an impression that the initial 2006 paper gave the details of the committee,  it is a false impression. You will find how you were misled in the item 6 of my post, Mysteries and questions about the doctors’ medical paper. You will also find how the doctors have left the father’s misunderstanding about the size of the committee uncorrected in my other post, How big was the special committee? 

 Now in the April paper, Dr. Diekema writes “the case was referred to the hospital ethics committee. The meeting was attended by eleven members of the ethics committee, the parents, the patient, and three of the patient’s physicians.” He finally revealed a number that may suggest something of the committee size. Eleven members of the ethics committee. First question is, why now? Why not during the heated controversy at the beginning of 2007 when so many people were talking about the BIG 40-member ethics committee. Some defenders even counted the big size of the committee as a reason to trust the decision. I doubt that Dr. Diekema was unaware of the wrong information repeatedly mentioned by defenders and in the media. Why did he wait to reveal the number of the members of the ethics committee who attended the meeting up until now?

The next question is who the eleven were. As I have repeatedly pointed out in this blog, it was the SPECIAL ethics committee that reviewed the Ashley case. But the authors haven’t explained how special that particular ethics committee was. Saying eleven members of the committee attended the meeting is not exactly the same as saying the ethics committee had eleven members on it. The Salon got an insiders’ information that the special ethics committee that reviewed the Ashley case had been insider-only. Were the eleven insider members from the ethics committee? Was it how they comprised and named the meeting the SPECIAL ethics committee? Why did they do that?  They have to explain because that would make the authors’ statement that the case was referred to the hospital ethics committee with an implication that it was the hospital’s regular ethics committee untrue. 

 4.  absence of detailed information of the committee discussion

During the 2007 controversy, Dr. Diekema kept saying that the committee had discussed “carefully” but failed to reveal the specific details of the discussion itself. That’s what he is doing in this paper again. The authors write in Objection 25, “the authors………claim that the ethics committee failed to do an adequate job. These claims are speculative, and quite simply wrong. In fact, the committee did explore less invasive options and did engage in a comprehensive, ethical discussion that included many of the issues Quellette assumes were not discussed and many that she left off her list.” I find it simply unbelievable that anyone can ever write anything so naïve in an academic paper. He is not saying any more than “You say we didn’t do our job right, but just believe me. We did it!” It is not even an argument. Why can’t  he just go ahead and provide with the specific information of what less invasive options were explored, what benefits and risks were discussed about each of these options and how, what were the reasons to turn down each of the options, what exactly were the issues they discussed that Dr. Quellette assumes were not discussed and how they discussed each, what exactly were the “many” issues they discussed that Dr. Quellette left off her list and what came out of the discussions?  How can he accuse critics of their “incomplete knowledge of what actually transpired in the ethics committee meeting” when that’s exactly the information and explanation he has been required but has failed to give?

4.  burden of proof

In the Ashley story of the Time of January 7, 2007, Dr. Gunther said, “If you’re going to be against this, you have to argue why the benefits are not worth pursuing.” The Diekema & Fost paper is based on the same logic when the authors conclude, ”we do not feel these arguments provide sufficient grounds to preclude similar use of these interventions for carefully selected patients who might benefit from them.” But it is such a perverse logic. Critics do not bear any burden to prove anything. They did not approve the novel and untested and controversial application of those invasive treatments or administer them to a disabled girl. It is the doctors, the authors here who are to bear the burden to prove by providing with “sufficient grounds” and clear and convincing evidences for their approval of the requests from Ashley’s parents.

It’s been three years since the case was first reported and Dr. Diekema obviously still feels the need to defend their decision by writing this paper. The authors of the paper list 25 different objections voiced during the three years.  TWENTY-FIVE critical arguments, addressing only “distinct substantive arguments” at that. To me, these two facts are proof enough that the doctors have failed to justify their decision.

5.  Dr. Diekema’s admission that he knew the necessity of court order

In Objection 25, they write, “While there is some legal basis for claiming that court review should be required for involuntary sterilization (Diekema 2003), there is no coherent legal or policy rationale for court review of growth attenuation.” With this, Dr. Diekema has proven what I pointed out in the post Dr. Diekema’s official views on involuntary sterilization: Why did he do everything he himself had said “Don’t” without doing things he had said “Do” in the Ashley case?  Note the year of the publication. The year 2003. It is the year  BEFORE the special ethics committee reviewed the request from Ashley’s parents. At the time of the meeting, Dr. Diekema clearly had an understanding that “court review should be required for involuntary sterilization.” Well then, what do we make of his many comments right after the hospital admitted the illegality of Ashley’s hysterectomy I pointed out here? They all contradict the understanding as well as what he wrote in this 2003 paper.

6.  half of Dr. Fost’s “no court in medicine” theory left unsaid

 In the last part of Objection 25, the authors argue that hospital ethics committees are good enough to make medical decisions without court involvement, mentioning Dr. Fost’s paper of 1992. They maintain that hospital ethics committees are trustworthy in themselves because they were originally created to replace the courts that failed to protect disabled children from life-threatening discrimination in medical practices. I haven’t read the paper, but I watched the webcasts of Dr. Fost’ presentations and panel at the 2007 Seattle Children’s Hospital bioethics conferences. I have also been carefully following the comments the ethicist has made on various issues in the media as you may see in the Links 7 post. I’m sure there’s a lot more in Dr. Fost’ theories.

You will know what I mean by watching the webcasts of his presentation, Parental Request for “futile” Treatment, and Panel on Day One of the conference from the same link post. He is a very radical proponent of the futile care theory. In the presentation, he says there are two different concepts of futility: qualitative futility and quantitative futility. By the latter he means that the futility decision is up to how the society measures the worth of the patient’s life. In fact, his is not a theory of medial futility of treatments but a theory of societal futility of patients. And he advises his audience, who are mostly medical professionals, very strongly not to go to courts for medical decisions because they won’t be able to do what they want that way. His message is “Just ignore the courts. No doctors have ever been convicted with liability in this country. We are safe. The courts should not have a say in medicine. Medical decisions are to be made by medical doctors.”

Dr. Fost did say something about hospital ethics committee’s protection of disabled children in Panel. But his tone of voice is clearly different from this Diekema & Fost paper makes it sound. When asked from the audience in Panel how they can assure interests of children are fully represented in ethics committees, he easily answered just including one or two persons from local community would suffice. Hospital ethics committee in his theory seems to me to be a justifying scheme to ward off judicial intervention and protect professional independence of medicine from judicial oversight. You will hear strong hatred of court intervention in his speech. You will also hear dislike and disdain of disabled children. Especially strongly when he said in Panel that disabled children had been killed in ancient times. I heard a challenge in his tone,  “what’s wrong if we leave them to die with our futile care theory now?”

8 & 9 July 2010 (2-day conference at London South Bank University)

Conference Aims: This conference aims to bring together all those who have an interest in ethics consultation, whether health and social care professionals or service users and carers, in order to foster and develop best practice in clinical ethics consultation across adult, maternity, children’s, older persons, mental health and learning disabilities.

Speakers

· Dr Doug Diekema, Seattle Children’s Hospital – Best Practices and Lessons Learnt from the Ashley (“Pillow Angel”) case

· Stephen Louw, Freeman Hospital, Newcastle. Chair of UK Clinical Ethics Network

· Debbie Purdy (health permitting)

· Margaret Branthwaite – Medical Doctor, Coroner and Lecturer in Medical Law and Ethics

Call for papers deadline 8 January 2010.

Conference announcement and call for papers
13 – 15 April 2010
University of Bristol

The aims of this conference are:
• To examine the nature, scope, causes, and grounds of progress in medicine.
• To provide a forum for developing the unified study of the history and philosophy of medicine, and in particular raising the profile of the philosophy of medicine in the UK and its engagement with the history of medicine.
• To create interdisciplinary bridges between the medical, philosophical, and historical professions, enabling medical professionals to become more theoretically engaged, while philosophers and philosophically-minded historians of medicine engage with the actual practice of medical professionals, so that their research reflects the realities and needs of modern medicine.
• To facilitate the wider dissemination of research in the philosophy and history of medicine beyond the boundaries of those disciplines, and especially in medical practice.
• To identify opportunities for public engagement concerning the relation between medical progress and changing attitudes to medical knowledge, the medical profession, and medical authority.

Conference homepage here.
Call for papers here.

The organising committee are:
Professor Alexander Bird (University of Bristol), Michael Bresalier (University of Bristol), Dr Alex Broadbent (University of Cambridge), Dr Havi Carel (University of the West of England), Dr Jeremy Howick (Oxford/UCL); advised by: Professor Donald Gillies (UCL) and Dr Rachel Cooper (Lancaster).

This conference is generously supported by the Mind Association, the British Society for the Philosophy of Science, and the Aristotelian Society.

I doubt mine could.  Which makes me think about Little House on the Prairie.  Anyone around in the 1970s remembers idyllic Walnut Grove, where Doc Baker took care of everyone and their pets.  He gave advice, dispensed medicines and sent the tough cases to Mancato (the big city).  People ran into him at the general store and he promised to stop on by the next time he was out their way.  To our modern ears, it sounds very quaint until you realize that this is the model of health care that we aspire to and were supposed to get with the onset of HMOs.  Under that model, we were each supposed to have a PCP who would monitor our health, give us lifestyle advice and send us to a specialist if any red flags showed up.  This would be the ‘gatekeeper’ (insurance term) that would be familiar enough with our health history that his or her decision would be one based on a long view of our individual health status.  Unfortunately, this model was managed to death by efficiency experts until it is neither efficient or effective.  The political choices we have before us continue this trend. Until we as patients demand better, the push will be for PCPs to do more with less.  In a recent poll (Investors Daily)  45 % of primary care physicians will consider quitting medicine if the government takes over the health care system.  That is approximately 360,000 doctors that will consider quitting practice.  Clearly, doctors are as frustrated as their patients.  Health care reform, to make any meaningful changes needs to redefine the role of doctor and patient.  The most efficient role the doctor can play is health coach in a proactive way.  That can’t be done in 5-10 minutes once a year. Or with a quick blood test.  Patients that are empowered by their relationship with their doctor will make the most beneficial (and coincidentally, the most cost-effective) changes to their own health.  In that climate, there will be less of a role for bean counters and government pencil pushers.  Let’s not give up the idea of Doc Baker too quickly. 

Dr. Michalene Elliott is a chiropractor in Rochester, NY who doesn’t want to be managed anymore.

A Philosopher’s – Eye View

I wrote this last year after observing the meetings of a London hospital Ethics Committee.

Last Summer I attended the meetings of a hospital clinical ethics committee.  In this article I will explain how such an ethics committee is run, what kinds of cases are discussed and the relevant bioethical principles which guide the practice of clinical ethics committees (CECs).  I will also consider the role of a Philosopher on an ethics committee, as I was particularly fascinated by the contributions made by the philosopher which I encountered at the meeting which I went to.

I will also consider what qualities are required to hold a permanent position on a CEC so you can find out if you could have the potential to be on an ethics committee!

According to the UK CEC Network, CEC’s have three main functions: the provision of ethics input into health care trust policy, support for health care professionals in individual cases and the provision of education and training in ethics for NHS staff.

The committee I saw usually meets once a month and is composed of 20 – 25 members.  It is a comprised of a wide range of people in order to be representative of the hospital as a whole.  The members include: clinical and non-clinical staff members from various departments and disciplines, lawyers, clergy and a philosopher, as well as lay-members.  This ensures there is adequate representation from medical, ethical and legal areas of expertise.  The committee aims to have a multi-disciplinary approach.

The discussions of the committee form recommendations rather than decisive judgements.  This is because the role of the committee is advisory and educational rather than prescriptive.  Cases can be referred to the committee for discussion via the hospital consultant or other members of the clinical team as well as patients’ families.

CECs perform a very different role in the United States, where they are ‘an integral part of the organisational infrastructure of hospitals’ (McClean 2007: 497).  However, there are only 60-80 CECs in the whole United Kingdom, which is only one-fifth out of the possible ones which could exist.  Although the role and function of CECs will most likely be increasingly determined by government legislation in future, at present individual NHS trusts have freedom to dictate the role of any CEC under their jurisdiction, and so UK CECs vary a great deal.  It seems likely that CECs will become more common and consistent due to central government policy in light of new challenges posed by new medical technologies and the benefit to patients and staff where they do exist (McClean).

The committee I attended usually discusses one case at each meeting.  The meetings act as a confidential forum for staff to get advice and raise difficult ethical issues related to the treatments of their patients.  The committee seems to function as a support network to discuss and elucidate relevant factors or ethical concerns posed by complex medical treatment, through referring to bioethical principles such as beneficence, non-malificence, autonomy and justice and protecting and acting to promote the best interests of a patient.  This CEC also placed a great deal of emphasis upon the use of ethical principles in conflict resolution, within the context of communication and decision-making between staff, patients and their families.

The CEC I attended was only one part of an ethics process open to staff and patients in need of guidance or support in ethical decision–making.  The hospital also provides the opportunity for specialist ethics consultations in between the monthly meetings to meet the patients’ and clinicians’ needs.  The committee holds discussions both prospectively and retrospectively – on both ‘hot’ and ‘cold’ cases.

The role of the philosopher in the CEC was particularly fascinating.  The place of a philosopher in an environment where real life or death decisions need to be considered could be questioned.  It could be argued that perhaps this is no place for abstract reasoning and the philosophers should stay in their armchairs and ivory towers.  However, I would challenge this strongly.  I think ethics should be practical and grounded in real life situations in order to make any useful contribution in a clinical case.  Abstract thought experiments have value for testing intuitions but this does not help the anxious doctor seeking to promote the best interests of the patient and their family.

The philosopher in the CEC held a vital role in directing the discussion according to bioethical principles, clarifying points of difference and bringing together lines of argument.  It was wonderful to see such a powerful philosophically trained mind at work, and I feel this provides some empirical demonstration that ethics should be practical and based in real – life dilemmas, otherwise its function and purpose is unclear.  It shows that academics can have something valuable to contribute to the work of the doctors working in the field of medicine, through clear reasoning and discussion and the application of relevant bioethical concepts and principles.

So, what kinds of qualities are required to become a member of an ethics committee?  Skills, knowledge and personal attributes are relevant.  Knowledge in areas such as health care law, cultural context, and medical background is important too.  Skills such as ethical assessment; operational skills, such as meeting facilitation and mediation skills for conflict resolution; and interpersonal skills such as listening, communication, and advocacy are also relevant.  Important personal characteristics may include tolerance, patience and compassion, honesty, reflection, courage, humility and integrity (Larcher, Slowther and Watson).

Getting a rare opportunity to witness how a CEC functions was a real privilege and I hope that this article has provided some insight into what I learned is involved.

The Immortal Life of Henrietta Lacks by Rebecca Skloot is forthcoming February 2010.  For a limited time FREE Advance Reader’s Copy Available for Professors and Teachers. To request a free copy, email rhacademic@randomhouse.com  with your name, college address and department name.

**Book is being used in several classes at Sweet Briar College in Virginia in the Spring 2010 semester

In 1951, an African American woman named Henrietta Lacks, stricken with cervical cancer, became an involuntary donor of cells from her cancerous tumor, which were propagated by scientist George Otto Gey to create an immortal cell line for medical research. These cells are now known worldwide as HeLa. In The Immortal Life of Henrietta Lacks, award-winning science writer Rebecca Skloot brilliantly weaves together the Lacks’s story–past and present–with the story of the birth of bioethics, the story of HeLa cells, and the dark history of experimentation on African Americans. Important, powerful, and compassionate, this is a remarkable work of science and social journalism.

“The Immoral Life of Henrietta Lacks is an ideal book for classroom discussions in bioethics, history of science, and science journalism. Author Rebecca Skloot does an exceptional job of raising critical issues that should encourage both scholars and students to reevaluate the research decision making process, the way research subjects are treated, and the balance of power in this country as determined by race, economics, and even education. An incredibly readable and smart text that should be a part of countless university discussions. — Deborah Blum, author of The Poisoner’s Handbook: Murder and the Birth of Forensic Medicine in Jazz Age New York, and Professor of Journalism, University of Wisconsin-Madison

“A rich, resonant tale of modern science, the wonders it can perform and how easily it can exploit society’s most vulnerable people.”– Publishers Weekly, starred review  (For the complete Publishers Weekly review, go to: http://rebeccaskloot.com/?p=394)

For Publishers Weekly article and book excerpt , go to:

www.publishersweekly.com/article/CA6705892.html

“Deftly weaving together history, journalism and biography, Rebecca Skloot’s sensitive account tells of the enduring, deeply personal sacrifice of this African American woman and her family…A stunning illustration of how race, gender and disease intersect to produce a unique form of social vulnerability, this is a poignant, necessary, and brilliant book.”—Alondra Nelson, associate professor of sociology, Columbia University

Science journalist and author Rebecca Skloot will be the “Lunch With an Author” session at the Association for Practical and Professional Ethics (APPE) conference on Saturday, March 6, 2010 and also “Author Meets the Critics” session on Saturday, March 6, 2010, 4-5:30pm.  For more details, visit the APPE website at  http://www.indiana.edu/~appe

Author website: rebeccaskloot.com/

For more information on the book or author, visit http://www.randomhouse.com/acmart

Sen. David Vitter Caught on Tape Arguing With Local Rape Victim — Politics Daily

How stupid do people have to be? The Senator has just signed his own political death warrant if he doesn’t do what his constituents need then why vote for him? Let’s send him a message loud  and clear. Call his office, flood his e- mail and don’t give him a freaking dime for his campaign!

Don’t reward bad behavior. I submit we do the same thing to Alan Grayson and any other political figure who acts like this- they don’t belong in Congress or in any political position anywhere if they aren’t doing their job right and protecting people’s rights. Let’s als0 remind them that the House and Senate rules were put in place for a reason. There’s supposed to be a sense of decorum on the floors of both governmental bodies and you don’yt make the lame excsues this idiot makes to the face of a rape victim. If I were her, I’d run against him next time there’s an election and get him kivked out of office. Let’s see what she’s got.

7-8 January 2010

Centre for Research in the Arts, Social Sciences and Humanities, 17 Mill Lane, Cambridge

The conference aims to identify and explore the underlying connections between the concepts of autonomy, decisional capacity, and mental disorder. It will provide a forum for philosophers, psychiatrists, legal experts, and other professionals whose work builds on these challenging concepts.

•    Does the notion of capacity necessarily involve some evaluative components? How does it relate to the notion of autonomy?
•    What are the defining features of mental disorder? Should they comprise distress and diminished control over one’s actions?
•    Is the focus on patient autonomy helpful in the context of mental healthcare? Does it unwittingly undermine both considerations of privacy and the rationale for practical assistance?
•    Could philosophical conceptions of autonomy account for psychiatric cases, in which autonomy is deemed to be compromised? Would the standard distinction between moral and personal autonomy be applicable?

Speakers:
•    Prof. Derek Bolton (Professor of Philosophy & Psychopathology, King’s College London and Hon. Consultant Clinical Psychologist,& Associate Director, Clinical Governance, South London & Maudsley NHS Trust)
•  Dr Lisa Bortolotti (Senior Lecturer, Department of Philosophy, University of Birmingham)
•    Dr Elizabeth Fistein (Cambridge Intellectual & Development Disabilities Research Group, Department of Psychiatry, University of Cambridge, and alumna of the MA in Medical Ethics and Law at KCL)
•    Prof. Bill Fulford (Fellow of St Cross College, University of Oxford, and Professor of Philosophy and Mental Health, University of Warwick)
•    Prof. Jane Heal (Professor in Philosophy, Faculty of Philosophy, University of Cambridge)
•    Dr Jules Holroyd (Lecturer, School of English, Communication & Philosophy, Cardiff University)
•    Prof. Agnieszka Jaworska (Associate Professor, Department of Philosophy, University of California Riverside)
•    Dr Hallvard Lillehammer (Senior Lecturer, Faculty of Philosophy, University of Cambridge)
•    Prof. Jennifer Radden (Professor and Chair, Philosophy Department, University of Massachusetts)
•    Dr Lubomira Radoilska (Wellcome Trust Research Fellow, Faculty of Philosophy, University of Cambridge)
•    Dr Jens Timmermann (Senior Lecturer in Moral Philosophy, University of St. Andrews)
•    Prof. Guy Widdershoven (Professor of Medical Philosophy and Ethics and Chair, Department of Medical Humanities, University of Amsterdam)

The conference programme, online registration, and further details are available here.

If you have any queries about this event, please do not hesitate to contact the conference convenor, Dr. Lubomira Radoilska via email: lr271@cam.ac.uk

I have been following the Patient Centered Medical Home movement for some time. The promise of “Advanced Primary Care” is that patients (clients/consumers/customers) will, by virtue of access to such care, be healthier. Although this sounds “pie in the sky”, there is good evidence that utilization of health care resources is moved from the Emergency Department to the primary care office (where chronic illness care and preventive services are also delivered), hospitalizations for primary care sensitive conditions (such as asthma) are reduced, and patients are more satisfied with their care. Additionally, the total costs of health care are reduced in systems which have instituted such a delivery system.

Earlier this week, IBM took the next step. They announced that they would fund 100% of primary care visits (no co-pay) to encourage utilization of primary care by the employees and their families. In a statement the company said “”This new approach advances IBM’s advocacy of wellness, preventative and
primary care — the cornerstone of keeping people healthy and productive,”
said Randy MacDonald, IBM senior vice president, Human Resources.  “As a
result of our focus on wellness and primary care, IBM employees have become
healthier and our costs are rising more slowly.”

In Mobile, Alabama, the University of South Alabama Medical Center had 380 admissions  (32% of all admissions) for “ambulatory sensitive conditions” in 2007. 1/4 of these spent time in the ICU.  This is despite the presence of 3 community health centers (25% charge for primary care if you are uninsured), the resources of the University, and the resources of the community. Maybe we need to take a lesson from IBM.

This is partly a response to Simon Rippon’s article.

A recent study has shown that philosophers don’t think ethicists are more moral than other philosophers.  This raises the question of the moral authority of ethicists and what the place of ethicists is in a medical context.  After all, if the philosophers surveyed are right; and philosophical reflection does not improve moral behaviour; why listen to the conclusions of ethicists at all?

Even if it is true that ethicists do not necessarily behave morally better than other philosophers, I argue this is irrelevant to the value of philosophical reflection in solving practical ethical dilemmas.  To suggest that the behaviour of individual ethicists threatens the authority of the conclusions of moral philosophy misses the point.  Even if some ethicists don’t practice what they preach, this is entirely separable from how virtuous they are compared to other philosophers, or the population at large.  The value of the arguments and conclusions of moral philosophy can, and perhaps should be, judged independently from the behaviour of its authors.

Not all moral philosophers are practical ethicists anyway, of course.  As Rippon notes, considering the prominence of meta-ethics amongst moral philosophers:

‘[a]ssuming that [meta]ethicists…are likely to behave better than other philosophers would be similar to assuming that philosophers of language are in general likely to write better or give better speeches’.

This is because the work of meta-ethicists is about analysing the terms and methods used in moral philosophy; it’s a technical project twice removed from moral behaviour so there is no special reason to expect the study of meta-ethics to lead to especially moral behaviour.

Where practical ethicists are concerned, I think it’s perhaps more likely within that sphere to see the philosophical work have an impact on an individual’s moral behaviour.  I doubt that it’s true, despite the sceptical conclusions of the other philosophers surveyed, that working in practical ethics does not have a positive impact on moral behaviour.  The survey question seems far too broad, because Virtue Ethicists in particular promote the development of a good character, which is likely to impact on their own lives.  A moral theory like Virtue Ethics can show how a compassionate approach can help with issues such as euthanasia and so on.

I also think in general that doing Philosophy is something that has an impact on personal behaviour beyond academic interest.  In my experience, Philosophy does get inside your head and affect how a person thinks and approaches everything, so I think the survey results are questionable.

The advice of moral ethicists is relevant for several reasons.  But first the authority of the work of moral philosophers should be distinguished from the problems associated with paternalism.  In arguing that doing philosophy does impact the way an individual acts, I am not suggesting that philosophers in general, or ethicists in particular, are necessarily more moral people that others.  Philosophers certainly don’t know all the ‘right answers’.  There also needs to be space to allow for differences in individual’s beliefs and values which may alter moral conclusions.  Moral superiority on the part of philosophers is misplaced and would require further justification, because there are no moral experts (unless you count God; and with the Euthyphro dilemma in mind I think it’s important the value of doing what is right and good is established independently of a moral authority’s instruction).  Socrates’ recognition of his ignorance should always be considered when people suggest that ethicists might know, or behave better!

The role of ethicists is important because a mind trained for moral reasoning can lead to consistent insights into these important issues.  An ethicist can provide an impartial perspective and help resolve conflicts between patient’s families and health professionals.  This is why the conclusions of moral philosophers can be relevant to promoting moral behaviour in the real world.

You could say The Witch Doctor grew up in a nutty environment. Her mother loved nuts and she ate some nearly every day. Not the mamsy-pamsy shelled nuts you buy nowadays in little packets. She would buy big paper bags full of almonds,  hazelnuts, walnuts and brazil nuts with their shells still on and crack them open with The Old Nutcracker.

And there were peanuts of course.

Peanuts were they easy ones to crack. The reason they were easy is that they are not nuts at all. They live in pods, not shells. This is because peanuts are of the pea, bean, lentil and lupin family. The Witch Doctor didn’t know that then. Her mother didn’t know that either. We just thought they were nuts with fragile shells.

Sometimes The Old Nutcracker was misplaced in our untidy house and then the nuts were wrapped in a newspaper and  broken with a hammer.

A more interesting way, though, was to find a door to break them.

If you don’t know how to break a nut in a door, then I’m not going to tell you. Just work it out! The Witch Doctor has been doing it since she was five years old!

If you don’t know how to break a nut in a door, it is probably because you were brought up in a tidy house where doors were not to be meddled with, and there was a place for everything and everything was in its place.

Poor thing!

Although The Witch Doctor became an expert at cracking nuts at a very young age, she never ate them.

Absolutely never!

She hated nuts.

She still does.

Mark you, she will happily eat nuts concealed in cooking or baking as long as the are well ground up and well hidden, but she would never dream of eating a whole nut (or a peanut for that matter).

She wouldn’t even eat a chocolate bar with whole nuts in it!

Honestly!

Well, she might eat all the chocolate round about the nuts and leave the nuts in an unhygienic pile somewhere.

Or feed them to the birds.

The reason The Witch Doctor avoids nuts is simple. It’s nothing to do with the taste. In fact, she quite likes the taste. Once she has chewed, and chewed, and chewed a nut it seems to float around inside her mouth and never seems to reach a consistency that is suitable for swallowing.

So she spits it out!

Since spitting is frowned upon nowadays, she refrains from eating nuts.

We witches never demonstrate bad manners!

It is at this point, The Witch Doctor feels she must confidently disagree with Albert Einstein.

“When I read philosophy I have the feeling of chewing on something that is not there to swallow.

ALBERT EINSTEIN”

Philosophy, Mr Einstein, is more like a great big nut. It’s there all right, and you can if you want indulge yourelf in an awful lot of chewing, but it never reaches the correct consistency to swallow.

Best to spit it out!

Or, if mannerly, don’t put it in your mouth in the first place!

Yes, My Black Cat, philosophy and nuts have much in common.

a red apple ……………………

The Witch Doctor – Link to a random page

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LINK TO UK MISSING KIDS WEBSITE

LINK TO MISSING PERSONS WEBSITE

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