Genetically Manipulaing Skin Color: The Ethics of the SLC24A5 Gene Variant

If scientists could modify a gene in your body to change your skin color, would you look at this as a scientific breakthrough and something personally valuable or would you think this would be a social catastrophe and would incite more social intolerance?

Osagie K. Obasogie writes an article titled "Racial Alchemy: Bioethics and the Skin Tone Gene" in the May 18, 2007 Hastings Center Bioethics Forum. The article begins "Since the 2005 discovery that the SLC24A5 gene variant plays a sizable role in human skin pigmentation, scientists have become increasingly intrigued by the possibility of genetically manipulating skin color. Curiously, however, this research is going on with little mention of the dreaded “R” word: race."

Read the article and come back and express your views on this "breakthrough" and what it would mean to you and society in general. Do you think that skin color and race are seperable or that scientists should consider, with higher regard than what might be regarded at present, the social implication of this area of research they are now entering? ..Maurice.

“Dying in Vain”: Homeric "Argument of Minerva": An Ethical Point of War

The flowers held in the vases provides a tribute to our fallen servicemen and women. But the highest tribute for those who died would be those who send them to war make certain that they have not died in vain. But as well written by Dan Smith in the Global Beat Syndicate “dying in vain” should not be an excuse to continue a war. Smith explains:

“Patriotism as love of one's country is a virtue, but it is not the highest virtue. Why? Because countries are human constructs, and as such are susceptible to incorporating the flaws, foibles, and imperfect understanding of events to which all humans are subject. It is these shortcomings that, undetected, uncorrected and uncompensated for, so constrict political vision that leaders perceive fewer and fewer options to even the most damaging policies. ‘Fighting on’ becomes not a free choice but an act of sheer desperation.


And the depth of such desperation is palpable in the rhetoric of those who, although instigating armed conflict, do not share the dangers of battlefield service. Theirs is the Homeric 'Argument of Minerva': once war begins, the first to die demand further sacrifice from their companions since they have demonstrated by their deaths that no price is too high to attain the war's objectives. ‘You must fight on, for if you now make peace with the enemy, you will offend the dead.’ “

My comment on this year's Memorial Day would be may those who die in war died as a consequence of a just reason for entering a war along with a just reason for not ending a war and for no other excuse. ..Maurice.

ADDENDUM: The photograph was taken by me on May 26, 2007 at Fort Rosecrans National Cemetery
Point Loma, San Diego County, California

The Devil: One Step Ahead

Melvin Kirschner, M.D. sent me an e-mail today with the following story. There must be some ethical meaning to it. Can you find it? ..Maurice.

In the beginning, God created the Heavens and the Earth and populated
the Earth with broccoli, cauliflower and spinach, green and yellow and red
vegetables of all kinds, so Man and Woman would live long and healthy lives.

Then using God's great gifts, Satan created Ben and Jerry's Ice Cream
and Krispy Creme Donuts. And Satan said, "You want chocolate with that?"

And Man said, "Yes!" and Woman said, "and as long as you're at it, add
some sprinkles." And they gained 10 pounds. And Satan smiled

And God created the healthful yogurt that Woman might keep the figure
that Man found so fair. And Satan brought forth white flour from the wheat,
and sugar from the cane and combined them. And Woman went from size 6 to
size 14.

So God said, "Try my fresh green salad." And Satan presented
Thousand-Island Dressing, buttery croutons and garlic toast on the side. And
Man and Woman unfastened their belts following the repast.

God then said, "I have sent you heart healthy vegetables and olive oil
in which to cook them." And Satan brought forth deep fried fish and
chicken-fried steak so big it needed its own platter. And Man gained more
weight and his cholesterol went through the roof.

God then created a light, fluffy white cake, named it "Angel Food Cake,"
and said, "It is good." Satan then created chocolate cake and named it
"Devil's Food."
God then brought forth running shoes so that His children might lose
those extra pounds. And Satan gave cable TV with a remote control so Man
would not have to toil changing the channels. And Man and Woman laughed and
cried before the flickering blue light and gained pounds.

Then God brought forth the potato, naturally low in fat and brimming
with nutrition. And Satan peeled off the healthful skin and sliced the
starchy center into chips and deep-fried them. And Man gained pounds.

God then gave lean beef so that Man might consume fewer calories and
still satisfy his appetite. And Satan created McDonald's and its 99-cent
double cheeseburger. Then said, "You want fries with that?" And Man replied,
"Yes! And super size them!" And Satan said, "It is good." And Man went into
cardiac arrest.

God sighed and created quadruple bypass surgery.

Then Satan created HMOs.

ADDENDUM 5-23-2007: A Comment posted on Saturday, October 28, 2006 6:26:00 AM, by Richard D. Smith expresses the following on a thread about satire. It probably explains why we are only left to smile with the punchline of the above story referring to HMOs.

From: The Circus of Medicine. Richard Dean Smith, MD


Managed care, an irrational, value-oriented mass medical movement, arose on false and erroneous assumptions by bureaucrats at Dept. of HEW during the 1960s and 1970s, that greed and cutthroat, marketplace competition through managed care would magically solve all problems of providing medical services. Zealots at HEW were followed by faultfinding men-of-words with a grievance who gave the movement its rhetoric. Resistance to the movement was swept away by endless repetition of meaningless clichés, satisfying need of a mass movement for slogans that must be as erroneous as possible directed towards a vague, glorious future. The movement need not profess truth, but it must have a devil, a devil with much good to its credit: its devil was the individual practicing physician. Once common sense and resistance were eliminated, salesmen produced meteoric growth of managed care during the mid-1990s. As managed care gained the upper hand and its promises of future glory faded, the movement was kept alive by fear and coercion: the work of practical men-of-action who are of law, not concerned with ideas of the movement but to preserve their power and wealth. Managed care was perpetuated by a technicality in the Employee Retirement Income Security Act of 1974 (ERISA) which Congress refused to amend, claiming ERISA was the result of ten years of planning by Congress and that Government had supported managed care in HMO development for over thirty years. The Court acknowledged that inaction of both Court and Congress followed a ‘trail of error’ supporting the ‘gaping wound’ of managed care. The Court realized managed care could not exist without ERISA’s obstruction of justice and fairness, and took the Fifth. Physicians and other providers of medical services tried to make sense of managed care when it was nonsense, a street hustle based on a hoax that went wild. Error piled upon error in woodenheadedness. Attacking such mass madness, a mass hysteria, is the place of satire when common sense, the press, academia, judiciary, legislative bodies, insurance industrial complex and regulatory agencies fail.

Direct to Consumer Advertising: Free Speech or Costly Consequences?

An article by Miriam Shuchman, M.D. in the New England Journal of Medicine to be published in Perspective section of the May 31,2007 issue but available now on the the NEJM website [note: may not be available without subscription] explains why it is unlikely that any regulations or laws to stop direct to consumer advertising would survive court review in terms of the Constitution free speech clause As long as the FDA approves the drug for use, public advertising cannot be suppressed. The issue and the consequences is reflected in today’s news about the heart attack risk with the popular diabetic drug Avandia. The long-term benefits and long-term risks are unknown at the time of FDA approval and there is no energetic but only casual attempts to obtain information regarding the long-term benefits and risks after the drug is released to the general public.

Examples of delayed disclosures of risks with subsequent removal from the market after extensive direct to consumer advertising and use are numerous and in recent times included the classic example of Vioxx. The New England Journal of Medicine article gives another example; the case of Zelnorm and how the suggestive direct to consumer TV advertising simply put more individuals at risk. Here is an extract:

“In February, Novartis submitted a review to the FDA that pooled data from 29 clinical trials of Zelnorm (tegaserod), its drug for women with irritable bowel syndrome. The company's analysis showed that among patients treated with the drug, 0.1% had a heart attack, a stroke, or severe chest pain, and one patient died, whereas the rate among patients taking a placebo was 0.01%, and none died. Though the drug has been on the market for more than 4 years, the FDA withdrew it this past March because it didn't consider the drug's benefits sufficient to justify exposing patients to even low risks of a cardiac event. By that time, Zelnorm had become a popular treatment for irritable bowel syndrome despite having limited effectiveness. Why? Perhaps its success had something to do with its highly visible television ad campaign: attractive young women pulled up their shirts to reveal their bellies inscribed with the slogan ‘I feel better.’ Although the drug was only 5 to 10% more effective than placebo for women and was not shown to work at all for men, the belly-baring ad seems to have worked wonders: U.S. doctors wrote 2.1 million prescriptions for Zelnorm in 2005.”

Free speech is one thing but, similar to calling “fire” in a crowded theater when there is no fire, calling a drug as safe and effective in the media when there has been no proof of its safety and efficacy in long term studies is in my opinion speech that is not free to be expressed and not in the best interest of those who hear the speech. ..Maurice.

Cultural Competency in Medicine: A Two Way Street?

There is a giant push in education of medical students, interns and residents in the United States to develop more cultural competency to enhance a more humanistic approach to the care of patients of all cultures in this country. For physicians in practice, promoting cultural competency has also become important. For example, in October 2005, California Governor Arnold Schwarzenegger signed Assembly Bill 1195 into law. The law mandates that the continuing medical education accrediting agencies must develop standards of compliance with the law making subjects of cultural and linguistic competency a mandatory part of the continuing educational requirements that all physicians must complete. "Cultural competency" is defined as as a set of integrated attitudes, knowledge, and skills that enable a physician and surgeon to care effectively for patients from diverse cultures, groups, and communities. "Linguistic competency" as the ability of the physician and surgeon to provide patients who do not speak English or have limited ability to speak English, direct communication in the patient's primary language.

What isn’t within a law is the requirement that those patients whose culture is different from the “American” culture as applied to the diagnosis, care and treatment of patients, both in ethical as well as legal aspects be required to also have cultural competency and acquire linguistic competency as they interact with the healthcare system in America. One example might be, as seen in some cultures, the necessity to avoid providing the patient with “bad news” (such as a diagnosis of cancer). And yet in the American medical culture, informed consent by the patient for testing and treatment is a norm and without the patient being fully informed regarding the diagnosis and the benefits and risks of procedures or treatments, any consent might not be considered a legal as well as ethical standard of medical practice.

I am not prepared to support this demand upon patients or their families for this understanding of American culture and English, but I do want to offer it here for discussion. Shouldn’t the doctor-patient relationship be a “two-way street” with both parties attuned to the other’s cultural backgrounds and requirements? Or is this too big a burden to place on any patient or family especially at a time of illness or in a relationship where the playing field is not perfectly equal in terms of apparent power? There is another question: Is American medical culture in all of its dependence on technology, lack of humanistic care and consideration, unequal distribution and to some inadequate medical care, publicity encouraging miracles and cosmetic enhancements, encouragement to malpractice suing, etc. etc. actually a culture even worthy of following? ..Maurice.

Do Doctors Need to Swear an Oath?

On August 6, 2004 I posted a topic “Hippocratic Oath: Is it Necessary? Are the Words Right?” In that post I presented a classic version of the Oath and a modern version, the latter, “written in 1964 by Louis Lasagna, Academic Dean of the School of Medicine at Tufts University, and used in many medical schools today.”

There are a number of modern versions of the Oath. Dr. Steven Miles, ethicist and physician, has published a version written in a modern vernacular and for which he has given me permission to post here. Steven H. Miles’ Vernacular version, University of Minnesota, 2007. (Based on Miles SH. The Hippocratic Oath and the Ethics of Medicine, Oxford University Press, 2006)

Hippocratic Oath: A 2007 Vernacular Version* Steven Miles

I swear by Human grief at the mortality of our loved ones, by the family of healers, by all manner of treatments and by health itself to fulfill this oath according to my power and judgment; and to respect those who have taught me this art and to support the institutions of health education, and to esteem those who aspire to become healers as my brothers and sisters and to share the facts, theories and methods of the healing sciences with them.

I will use treatments for the benefit of the ill in accordance with my ability and my judgment but from what is to their harm or injustice I will keep them. I will not assist with murder nor will I assist such endeavors. I will not endanger a woman in pregnancy.

In a pure and holy way I will guard my life and my art.

To each clinical encounter, I will go for the benefit of the ill and I will refrain from unjustly treating them, especially from sexual acts with my patients or their relatives. I will remain silent about the private things that I see or hear regardless or whether I learn of them during treatment or in broader conversations,

If I honor this oath and do not evade its spirit or violate it, may I enjoy the benefits of life and of this profession and be respected by all. If I transgress, the opposite be my lot.


*This version is derived from the translation of von Staden H. J Hist Med Allied Sci 1996;51:406 and the analysis of its cultural meaning in Miles SH. The Hippocratic Oath and the Ethics of Medicine, Oxford University Press, 2004. I deleted the passage, "I will not cut, and certainly not those suffering from stone, but I will cede [this] to men [who are] practitioners of this activity," because it was probably inserted centuries after the 500 BC writing of Oath. Steven Miles.

My question, as it was the 2004 posting is the same: is it really important to have an Oath for the profession of medicine to which students swear to uphold before they enter the profession? Should physicians in practice swear to the Oath too and maybe even each time they renew their licenses? Is an Oath and swearing to uphold it anachronistic in this time of modern medicine with all the current regulations and laws with penalties, malpractice lawsuits and often widespread bad publicity for those who disregard the rules? I really would like to hear from patients and physicians regarding the need for a professional oath in medicine. ..Maurice.

ADDENDUM 5-18-2007:
Ethicist Ken Kipnis today wrote the following view regarding the significance to the profession of medicine and professional behavior of students or physicians taking or living under an oath like the Hippocratic oath.

Apart from the practical question of whether novice doctors who publicly take the Hippocratic oath (or even some local updating of same) are more ethical than those that don't, I have two qualms about such rituals.

First, they convey the impression that a public vow is the foundation for the special obligations of physicians. This has to be false. If it were true, then doctors who somehow missed the Hippocratic Oath ceremony would be ethically free to disregard what would otherwise be their professional obligations. Obviously this is not so. At best, oaths are merely public solemnizations of already extant ethical provisions: neither their source nor their foundation. To the extent that these ceremonies suggest ethical foundationality (excuse the term), they are misleading and should not occur.

Second, the use of the Hippocratic Oath elevates the handiwork of a single person (or group) to canonical status: in effect beyond serious criticism. One cannot reject the Constitution without placing oneself outside the community of American jurisprudes. One cannot reject the Nicean Creed without placing oneself outside of a certain community of Christians. If only because ethical insight is dynamic, it is not wise for medicine to conceive itself as an interpretive community, bound together by a shared endorsement of a single text. Alasdair MacIntyre somewhere describes a vital tradition (medicine could be an example) as, in part, an ongoing argument about the nature and implications of its distinctive goods. The capacity to support vigorous debate about the ethics of medicine is, in my opinion, at the heart of medicine's professional responsibility. That job is impaired by the view, encouraged by the solemn and public intonation of venerable oaths, that what doctors need to know about ethics is to be discerned somehow within the four corners of a single ancient document. Does anyone believe that? If it were so, would there be so many attempts at revision. If medicine, as a profession, truly appreciated both the Oath's shortcomings and the importance of a common professional commitment, then the PROFESSION would develop both an adequate expression of that commitment and the organizational resources to interpret and revise the text as needed.

How likely is that?

Ken Kipnis
Professor of Philosophy
University of Hawaii at Manoa
kkipnis@hawaii.edu

ADDITIONAL ADDENDUM 5-20-2007:

Physician ethicist Steven Miles who wrote the more modern vernacular version of the classic Hippocratic Oath posted above has kindly permitted me to post here his personal view of oaths as he wrote about the subject in "The Hippocratic Oath and the Ethics of Medicine" Oxford University Press, 2004, p 172).
________________________________________________

I have no doubt that the same criticism that have been raised about the Oath can be raised about ethics courses in medical or nursing school or indeed the entire field of bioethics. Nihilism can always claim the high ground although is seems that nihilists invariably use that weapon to blast opponents rather to inveigh against the significance of their own contributions.Here is what I wrote on this matter in “The Hippocratic Oath and the Ethics of Medicine” Oxford University Press, 2004, p 172). I stand by this assessment.

”Can Oath still speak to our time? Stuart Spicker, a medical ethicist, recently derided a new statement of medical ethics with these words:’As for oaths of virtually any sort - especially those generated for professionals - they’ve never directed professional conduct; neither, I suspect, will any contemporary version. Historians of medicine have years ago documented the irrelevancy of the Hippocratic Oath, especially in Hippocrates’ own time. More recent literature finds professionals ignoring the precepts altogether.[i]

’This harsh and unprovable assessment misapprehends the nature of oaths. Most of us respond to reminders that our lives are evaluated and in some mysterious way fulfilled by acknowledging some standard of moral coherence and purpose. The cautionary words of an oath, a sermon, a play, a friend, or even a stranger may cause us to reflect as we move along paths that are new to us or on those that are so oft-traveled that we have become unmindful of the importance of our steps. In these moments of renewed moral consciousness, we can choose in new ways with a refreshed sense of what is at stake. Oaths do not compel ethical behavior but they are human instruments that are crafted to sensitize the reader to moral moments and choices. Sometimes, as when Dr. Uzun resisted torture in Turkey, an honored moral voice can serve as an anchor that helps a person stand fast when the tide of history is running strongly in another direction.

Medical ethics instruments fall into two large groups: those that require a physician to perform them and those that exhort physicians to act in a certain way. Oaths and petitionary prayers are examples of those that are written to be read as first person proclamations of moral commitments.[ii] For example, Oath begins, “I swear by Apollo” and proceeds with to articulate its moral positions with “I will” or “I will not.” The Physicians’ Prayer of Moses Maimonides (12th CE) is a petitionary prayer: ”Inspire me with love for my Art and for Thy creatures. Do not allow thirst for profit, ambition for renown and admiration, to interfere with my profession.”[iii] The Oath of Asaph and Yohanan (6th CE) consists of two parts: rabbinic instructions on what is required of a physician (“Do not harden your heart from pitying the poor and healing the needy”) and a responsive proclamation (“We will do all that you exhorted and ordered, for it is a commandment of the Torah, and we must do it with all our hearts, with our soul and with all our might”).[iv] The 1998 Declaration of Geneva begins: “I solemnly pledge myself..” Reading in a proclamatory voice commits the physician to the avowed promises.

To an increasing degree, the first person voice of medical oaths is being supplanted by ethical instructions for a physician to study rather than proclaim. For example, the American Medical Association’s Council on Ethical and Judicial Affairs asserts that: “At a minimum, a physician’s ethical duties include terminating the physician-patient relationship before initiating a dating, romantic, or sexual relationship with a patient. [v] By contrast, a morally accountable person stands behind a statement like, “I will be far . from sexual acts both upon women’s bodies and upon men’s, both of the free and of the slaves.”[vi] Governments, international organizations, and professional associations promulgate many such hortatory codes, regulations, declarations, and laws. This voice offers several advantages to institutional sponsors. First, though they may be aimed at physicians, their moral authority rests with the sponsor. This obviates the need to assert a foundational value for the position in a world where the traditional foundations of moral claims are challenged. In response to the challenge, “Who says physicians should not have sex with patients?” the answer returns: “The AMA’s Council on Ethical and Judicial Affairs says so.” Second, sponsors may unilaterally define the boundaries of medical ethics. Some asserted boundaries are reasonably grounded in circumscribed expertise. For example, an association of neonatologists might offer an ethics opinion on the moral dilemmas posed by “extracorporeal membrane oxygenators” (a complex machine to oxygenate the blood of critically ill premature infants). However, sometimes a medical organization’s moral horizon may sunder a moral community. For example, the expansively named “Charter for Medical Professionalism” grounds its vision of medical ethics on the “frustration” of physicians in “industrialized countries.”[vii] By so doing, this Charter unjustifiably narrows the moral scope of medical professionalism to the parochial priorities of economically and politically privileged physicians and marginalizes the grave economic and human rights issues faced by physicians working in poor or totalitarian nations.

Notwithstanding the increasing number of instruments and the shift to hortatory medical ethics codes, one could argue that Oath is doing better than ever. It was rarely mentioned in Europe until about 1500 when it emerged in the context of Renaissance interest in Greek and Roman civilizations.[viii] The percentage of US medical schools reciting an oath increased from 24% in 1928, to 72% in 1958, and to 98% by 1993.[ix] Half of these schools use a variant of the Hippocratic Oath; the rest use other performative texts. Even so, only a handful of schools expose students to the text of Oath during their medical ethics education.[x] One might speculate that the use of the oath format reflects an unmet hunger for sacred ceremonies. This may be partly true but I think that oaths endure because they require the physician to speak of their values. At some level, physicians recognize that a personal revelation of moral commitments is necessary to the practice of medicine.”
-----------------------------------------------------------------------
[i] Message on Medical College of Wisconsin Bioethics Discussions, e-mail chat line. Feb 8 2002. (used with permission of author.)
[ii] Sulmasy DP. What is an oath and why should a physician swear one? Theoret Med & Bioethics 1999;20:329-46; Hasday LR. The Hippocratic Oath as literary text: A dialogue between law and medicine. Yale J Health Policy, Law, Ethics 2002;II(2):299-323.
[iii] Rosner F. The physician’s prayer attributed to Moses Maimonides. Bull Hist Med 1967;41:440-54.
[iv] Shlomo P. “The Oath of Asaph the Physician and Yohanan Ben Zabda. Its Relation to the Hippocratic Oath and the Doctrina Duarum Viarum of the Didache.” Proceedings of the Israel Acad Sci and Humanities 1975;9:223-64.
[v] E-8.14 Sexual Misconduct in the Practice of Medicine. in: 1992 Code of Ethics: Annotated Current Opinions. Chicago, IL: American Medical Association, 1992.
[vi] Examples of this difference are easy to see. For example, Oath says, ”In a pure and holy way, I will guard my life and my art and science” whereas a recent document in the instructional voice says, “The profession is responsible for the integrity of this knowledge, which is based on scientific evidence and physician experience.” American Board of Internal Medicine Foundation et al. op. cit. See also the World Medical Organization. Declaration of Helsinki. Brit Med J 1996;313(7070):1448-9.
[vii] American Board of Internal Medicine Foundation, American College of Physicians-American Society of Internal Medicine Foundation, and European Federations of Internal Medicine. Medical Professionalism in the New Millennium: A Physicians Charter. Ann Int Med 2002;136:243-6.
[viii] Nutton V. What’s in an oath? J Roy Coll Phys in London 1995;29:518-24.
[ix] Friedlander WJ. Oaths given by US and Canadian medical schools. Soc Sci & Med 1982;16:115-20; Carey EJ. The formal use of the Hippocratic Oath for medical students at commencement exercises. Bull Assn Amer Med Coll 1928;159-66; Irish DP, McMurray DW. Professional oaths and American Medical Colleges J Chronic Disease 19655;18:275-89; Orr RD, Pang N, Pellegrino ED, Siegler M. Use of the Hippocratic Oath: A review of twentieth century practice and a content analysis of oaths administered in medical schools in the US and Canada in 1993. J Clin Ethics 1997;8(winter):374-5.
[x] Dubois JM, Burkemper H. Ethics education in US medical schools: A study of syllabi. Acad Med 2002;77432-37

On Being a Mother: Maternal Grief

For Mother's Day, here is a somber thought after many happy thoughts we have about our mothers today. The death of a mother's child at any time of life breaks a special bond which even between the child and the father,I think,is undisputedly different. Here is a poem by William Wordsworth (thanks to everypoet.com.)
writing about the child both his wife and he had lost. ..Maurice.

MATERNAL GRIEF

by William Wordsworth (1770-1850)

DEPARTED Child! I could forget thee once
Though at my bosom nursed; this woeful gain
Thy dissolution brings, that in my soul
Is present and perpetually abides
A shadow, never, never to be displaced
By the returning substance, seen or touched,
Seen by mine eyes, or clasped in my embrace.
Absence and death how differ they! and how
Shall I admit that nothing can restore
What one short sigh so easily removed?--
Death, life, and sleep, reality and thought,
Assist me, God, their boundaries to know,
O teach me calm submission to thy Will!
The Child she mourned had overstepped the pale
Of Infancy, but still did breathe the air
That sanctifies its confines, and partook
Reflected beams of that celestial light
To all the Little-ones on sinful earth
Not unvouchsafed--a light that warmed and cheered
Those several qualities of heart and mind
Which, in her own blest nature, rooted deep,
Daily before the Mother's watchful eye,
And not hers only, their peculiar charms
Unfolded,--beauty, for its present self,
And for its promises to future years,
With not unfrequent rapture fondly hailed.
Have you espied upon a dewy lawn
A pair of Leverets each provoking each
To a continuance of their fearless sport,
Two separate Creatures in their several gifts
Abounding, but so fashioned that, in all
That Nature prompts them to display, their looks,
Their starts of motion and their fits of rest,
An undistinguishable style appears
And character of gladness, as if Spring
Lodged in their innocent bosoms, and the spirit
Of the rejoicing morning were their own?
Such union, in the lovely Girl maintained
And her twin Brother, had the parent seen,
Ere, pouncing like a ravenous bird of prey,
Death in a moment parted them, and left
The Mother, in her turns of anguish, worse
Than desolate; for oft-times from the sound
Of the survivor's sweetest voice (dear child,
He knew it not) and from his happiest looks,
Did she extract the food of self-reproach,
As one that lived ungrateful for the stay
By Heaven afforded to uphold her maimed
And tottering spirit. And full oft the Boy,
Now first acquainted with distress and grief,
Shrunk from his Mother's presence, shunned with fear
Her sad approach, and stole away to find,
In his known haunts of joy where'er he might,
A more congenial object. But, as time
Softened her pangs and reconciled the child
To what he saw, he gradually returned,
Like a scared Bird encouraged to renew
A broken intercourse; and, while his eyes
Were yet with pensive fear and gentle awe
Turned upon her who bore him, she would stoop
To imprint a kiss that lacked not power to spread
Faint colour over both their pallid cheeks,
And stilled his tremulous lip. Thus they were calmed
And cheered; and now together breathe fresh air
In open fields; and when the glare of day
Is gone, and twilight to the Mother's wish
Befriends the observance, readily they join
In walks whose boundary is the lost One's grave,
Which he with flowers hath planted, finding there
Amusement, where the Mother does not miss
Dear consolation, kneeling on the turf
In prayer, yet blending with that solemn rite
Of pious faith the vanities of grief;
For such, by pitying Angels and by Spirits
Transferred to regions upon which the clouds
Of our weak nature rest not, must be deemed
Those willing tears, and unforbidden sighs,
And all those tokens of a cherished sorrow,
Which, soothed and sweetened by the grace of Heaven
As now it is, seems to her own fond heart,
Immortal as the love that gave it being.

More on Ashley: No Due Process

Now the federally authorized Washington Protection and Advocacy System (WPAS), a state organization to prevent abuse of the disabled has investigated the Ashley case and have come out with their conclusion. Here is an excerpt from the Executive Summary as released by WPAS. Seems clear cut.. or is it? Please also read another view in an Addendum to my blog which follows the WPAS document. Also you may want to go to this link for my original posting in Jan. 2007 about the Ashley case. ..Maurice.



Executive Summary
• The Washington Protection and Advocacy System (WPAS) is the federally
mandated protection and advocacy (P&A) agency for the state of
Washington. The P&As, which exist in every state and territory, are
“watchdog” agencies with legal authority under federal statutes to
investigate allegations of abuse and neglect of persons with disabilities and
to advocate for their legal and human rights.
• Pursuant to its federal authority, WPAS initiated its investigation of what
happened to Ashley in regards to her “Ashley Treatment” after publication of
a medical journal article describing the medical interventions provided to a
young child with developmental disabilities and suggesting it might be
appropriate for others. WPAS also received numerous complaints after
widespread media coverage of the situation.
• Ashley is a girl with developmental disabilities who was six years old at the
time the interventions began. The intervention included surgical removal of
her uterus and breast buds, as well as high-dosage hormone therapy to limit
her growth and physical sexual development.
• The Washington Supreme Court has ruled that when a parent or anyone
else seeks to sterilize an incompetent individual with a developmental
disability, the individual must be afforded due process and a multi-factored
test must be proven by clear and convincing evidence before a court can
authorize the sterilization.
• The “Ashley Treatment” was conducted by physicians at Children’s Hospital,
at the request of Ashley’s parents and after review by the Hospital’s Ethics
Committee. There was, however, no court order sought or obtained before
the sterilization portion of the “Ashley Treatment” was performed.
• FINDINGS: The sterilization portion of the “Ashley Treatment” was
conducted in violation of Washington State law, resulting in violation of
Ashley’s constitutional and common law rights.
o The Washington Supreme Court has held that a court order is
required when parents seek to sterilize their minor or adult children
with developmental disabilities, and that the individual must be
zealously represented by a disinterested third party in an adversarial
proceeding to determine whether the sterilization is in the individual’s
best interests.
o Courts have also limited parental authority to consent to other types
of medical interventions that are highly invasive and/or irreversible,
particularly when the interest of the parent may not be identical to the
interest of the child. Thus, the other aspects of the “Ashley
Treatment” – surgical breast bud removal and hormone treatments –
should also require independent court evaluation and sanction before
being performed on any person with a developmental disability.
o The implementation of the “Ashley Treatment” also raises
discrimination issues because, if not for the individual’s
developmental disabilities, the interventions would not be sought.
Such discrimination against individuals because of their disabilities is
expressly forbidden by state and federal law.
• The violations appear to have occurred as a result of:
o a lack of policies at Children’s Hospital regarding the
sterilization of minors with developmental disabilities;
o an opinion of Ashley’s parents’ counsel that no court order
was required. This legal opinion was not supported by
Washington law;
o reliance upon that opinion by doctors at Children’s Hospital
and the mistaken belief that the opinion of Ashley’s parents’
counsel constituted a “court review;” and
o insufficient internal controls at Children’s Hospital to ensure
that Ashley’s independent legal interests were protected.
• As a result of the WPAS investigation, Children’s Hospital has agreed to
take the following corrective actions:
o Develop and implement a policy to prohibit sterilizations of persons
with developmental disabilities without a court order. The policy will
assure that all appeal periods and appeals, if any, are exhausted
before any procedures are performed;
o Improve internal controls and oversight to insure that no sterilizations
can take place without the necessary court order; and
o Give notice to WPAS of requested sterilization of persons with
developmental disabilities so that it can continue to act as a
watchdog on behalf of individuals with disabilities.
• Additionally, Children’s Hospital has also agreed to take the following
additional steps to protect the rights of children with developmental
disabilities for whom the “Ashley Treatment” or other growth-limiting
interventions are sought:
o Develop and implement a policy to prohibit growth-limiting medical
interventions on persons with developmental disabilities without a
court order. The policy will ensure that all appeal periods and
appeals, if any, are exhausted before any procedures are performed;
o Give notice to WPAS of requested “Ashley Treatment” and other
growth-limiting interventions of persons with developmental
disabilities so that it can continue to act as a watchdog on behalf of
individuals with disabilities; and improve internal controls and
oversight to assure that no such procedures can take place without
the necessary court order. To the extent that it is medically viable, the
policy will include provisions to monitor the prescriptions for high
dosages of hormones that the Hospital’s pharmacy has been asked
to fill; and
o Include a disability rights advocate on the Hospital’s Ethics
Committee. The Committee will also bring in experts in particular
relevant areas as it relates to medical care and interventions for
individuals with developmental disabilities, as appropriate.
• NEXT STEPS: In order to continue advocating for the rights of people with
developmental disabilities for whom sterilization or growth-limiting
interventions may be contemplated, WPAS will:
o work with Children’s Hospital in ways identified in Section V of this
Report and monitor the implementation of the Agreement between
Children’s and WPAS;
o conduct outreach to courts and guardians ad litem to advise them of
WPAS’s availability to provide technical assistance to guardians ad
litem and/or representation for children with disabilities for whom a
court order is being sought to perform a sterilization, the “Ashley
Treatment,” or other growth-limiting medical interventions;
o provide technical assistance to other P&As and disability rights
related organizations throughout the country who wish to address
issues related to sterilization, the “Ashley Treatment,” or other
growth-limiting interventions for children with disabilities, and conduct
activities similar to those WPAS is doing in Washington State;
o participate in opportunities to educate the public on legal and other
issues related to sterilization, the “Ashley Treatment,” or other
growth-limiting interventions for children with disabilities, from the
perspective of the disability community;
o promote the availability of WPAS’s advocacy services to obtain
assistive technology to facilitate mobility and ease of providing
personal care where funding is required by law; and
o widely disseminate this report to various organizations and agencies
in an attempt to draw attention to the need to take proactive
measures to protect individuals with developmental disabilities.
WPAS will also collaborate with our partners in the disability
community to:
o identify and promote the best candidates who have a “disability
perspective” for participation in hospital ethics committees around the
state;
o conduct outreach to hospitals throughout the state to encourage
them to adopt policies similar to the ones being developed for
Children’s;
o develop a strategy for reaching and educating doctors who may be
considering providing high doses of hormones for the purpose of
growth attenuation of individuals with developmental disabilities on
an outpatient basis in their offices and without the involvement of any
hospital;
o create and disseminate educational materials and make
presentations to train doctors, medical students, members of hospital
ethics committees, judges, guardians ad litem, lawyers, law students,
people with disabilities and parents of people with disabilities on legal
and other issues related to sterilization, the “Ashley Treatment,” and
other growth-limiting medical interventions for children with
developmental disabilities from the perspective of members of the
disability community;
o work with agencies involved in certification, accreditation, and
licensing of hospitals and health care providers to assure that
standards, criteria and requirements related to the provision of
sterilization, the “Ashley Treatment,” and other growth-limiting
medical interventions for children with disabilities are clear,
consistent with the law, and communicated to those who need to
know;
o work with health insurance companies operating in Washington State
and around the country to assure that their policies for reimbursing
costs of the “Ashley Treatment” and other growth-limiting medical
interventions for individuals with developmental disabilities are clear,
consistent with the law, and communicated to those who need to
know;
o work with the disability community in Washington State and around
the country to identify and advocate other ways to restrict the
performance of the “Ashley Treatment” and related growth-limiting
medical interventions for children with disabilities to the furthest
extent possible;
o to the extent necessary, seek the means necessary to accomplish
the above in a timely manner; and
o work with people on every side of the debate to join together to
improve the services and supports for children with disabilities and
their families.
To view the complete Investigative Report Regarding the “Ashley Treatment”,
please see www.DisabilityRightsWA.org. To receive this document in an
alternative format, please contact DRW Administrator Jessica McDaneld at
206-324-1521 or TTY 206-957-0728.

ADDENDUM TO THIS BLOG 5-11-2007: Two days ago, Douglas S. Diekema MD from the Department of Pediatrics, Children's Hospital and Regional Medical Center,
Seattle, WA wrote the following post to a bioethics listserv. In order to provide another view and further details of the Ashley issue, I am posting Dr. Diekema's writings here with his specific permission. ..Maurice.


"There seems to be some misinformation regarding the findings of the WPAS
investigation in the Ashley case. Read the documents related to the WPAS investigation. Both the report and the accompanying
ethics committee minutes recognize that the ethics committee made the
determination that the procedures being requested by Ashley's parents appeared to be ethically acceptable, but that we could
not speak to whether a hysterectomy would be legal given CASE law in Washington
State and the family was told to seek a court order. The problem occurred because the family sought an opinion from a
disability rights lawyer (who himself has a disabled child) who felt that the
facts were sufficiently different from the case law that a court order was not required. The surgeon and
medical director,
when confronted with the lawyer's letter and not being lawyers themselves, made
the assumption that
this was sufficient--a mistake I think someone who is a lawyer could very easily
make. Bear in mind,
that since this is case law, you can't just look at the Revised Code of
Washington to get the answer to this question.

The WPAS report does NOT extend to determining whether the treatment of Ashley
was ethical or not (and in fact the investigation did not include any discussion with members of the ethics committee), but
only provides the opinion of WPAS as to whether any law (in this case case law)
was violated.

I agree that placing advocates on ethics committees is a very bad idea. The WPAS
report specifically refers to disability rights advocates, rather than someone with a disability perspective or someone with
a disability. There is a difference, since advocates frequently come with a
predetermined agenda.

Finally, perhaps the most disturbing part of the report is that in the opinion
of WPAS, treatments that are highly invasive or irreversible require a court order in a developmentally disabled child before they
are performed (this includes growth attenuation). By that reasoning, however, I
would also think it should include growth hormone treatment of children with Turner's syndrome (given to make them taller) and osteotomies and tendon releases (invasive and irreversible) and lots of other procedures (tracheostomies and g-tubes are certainly invasive). That's starting to look like a lot of court orders and sends a message of incredible disrespect to the parents of these kids.

Doug

Douglas S. Diekema MD, MPH
Treuman Katz Center for Pediatric Bioethics
Department of Pediatrics
Children's Hospital and Regional Medical Center
Seattle, WA"

Diagnosis Challenge: “It’s most likely..” vs “What Else Could It Be?”

“It’s most likely…” vs “What else could it be?” This is what is going on in the mind of a physician as he or she evaluates a patient’s symptoms to try to name a disease which the patient is bearing. A recent article by Jonathan Kay as written in the National Post describes the book written by Harvard Medical School physician, Dr. Jerome Goopman titled “How Doctors Think”. The article brings out a main point of the book that physicians should not close their minds to possible diagnoses that are beyond the diagnosis that first comes to mind. This is because it is not uncommon that doctors miss the correct diagnosis because they rely on their initial impressions (even based on stereotypes) or don’t acquire or listen carefully to all the facts or perform an incomplete physical examination. In fact, not only physicians should say to themselves “what else could it be” but, in fact, patients themselves should challenge their doctors by asking them the same question.

It is interesting that there appeared a comment to the Kay article challenging the advice for patients, especially in some emergency room situations, to even consider posing the “what else could it be” question to the ER doc.

Read the linked text.

Repeating what I wrote about in a previous post, I am in the process, over the past 5 weeks with 2 more weeks to go, of facilitating a 2nd year medical school course titled “Integrated Cases” which is designed to aid medical students who have learned all the biology and clinical facts of many diseases and are about to use these teachings on the wards with real patients during their clinical clerkships in the 3rd and 4th years, on how “doctors think” to make a diagnosis.
We hope to teach them the correct way to “think” out the medical problem. This thinking does involve making assumptions based on previous personal experience and the literature (“scripted method”) but also a careful detailing and analysis of the facts of the case (“analytical method”). Physicians also have to consider whether the cluster of symptoms that the patient presents represents a single active disease or whether these symptoms actually represent two or more diseases occurring simultaneously.

I personally am not against a patient asking the “what else could it be” question to their doctor. I think it is all part of the team work that both the doctor and patient are involved together within the doctor-patient relationship to attempt to solve and cure the symptoms and disease. ..Maurice.

ADDENDUM 5-16-2007: Listen or watch Dr.Jerome Goopman as interviewed on PBS "The News Hour" on 5-15-2007.

Where Have All Those Doctors Gone?: Coming Back in Boutique Medicine?

With acknowledgment to Pete Seeger :


“Where have all the humanistic doctors gone?
Long time passing
Where have all the beloved doctors gone?
Long time ago
Where have all those doctors gone?
HMOs have picked them every one
And set benchmarks but not for patient benefit
When will HMOs ever learn?
When will the doctors ever learn?
When will they ever learn?”


On the other hand, there may be some doctors who have learned and are returning to private practice. Debra C. Cascardo writing the Medscape article back in 2003
tells us about the “new” concept in medical practice to which physicians are now migrating out of HMO’s into “Boutique Medicine: A New Concept Based on Traditional Ideals”

She writes: “One of the newest trends emerging in medical care is based on one of the oldest business concepts -- exceptional customer service. So-called "boutique" medical practices are borrowing a page from small specialty shops by finding their niche: patients who want specialized services and amenities and are willing to pay extra to receive them. Also referred to as concierge or retainer practices, these medical practices offer patients these extra services for a monthly or annual fee.
Some of the usual services to which the ‘membership’ fee entitles patients are:

· guaranteed same-day appointments;
· email and phone access;
· extended time with the physician;
· specialty newsletters;
· wellness programs; and routine checkups that might not be covered by insurance"
.
Read the complete article and return to discuss the issue. This thread might tie in to the discussion in the Comment section of the last thread. ..Maurice.

ADDENDUM: To read the Medscape article you may have to register. A research article on boutique medicine (also known as retainer or "concierge" practice) which surveys both retainer and non-retainer physicians regarding their practice and considers the ethical aspects of this type of practice can be read free at PubMed Central.