Snake oil Anyone?

A company in Boulder, CO is offering a genetic test to determine what kind of sport your child is most genetically suited for. For $149, with the swab of a cheek your child will know if he or she would be best at speed and power sports like sprinting or football, or endurance sports like distance running, or a combination of the two.

These seems like a terrible idea to me. First of all you are possibly pigeon-holing your child into a specific sport when he or she could excel at any number of activities. Secondly, this is frighteningly a reminder of our eugenics past. Where will this drive for genetic advanage stop?

Also as many of the Dr.'s in this article point out. Everything we know about genetics is pointing less and less to the isolation of certain genes causing certain traits and more towards a combination of genetic and environment causes.

Seems like a new snake oil salesman if you ask me.

http://news.aol.com/article/poll-rates-most-and-least-ethical-jobs/259161?icid=100214839x1214058528x1200860973


Why is it that every year nurses are voted the most ethical of professions? I will be very proud and pleased to explain it to you.
The philosophy and understand standing of ethics in healthcare is taught directly from the first day of nursing school. While we are learning the biology and science of medicine we are constantly reminded of the ramifications of what could go wrong given a situation. This concept is driven into our head at every turn and the answers on every multiple-choice question. In addition, the instructors also boost our pride at every opportunity by glorifying the profession and reminding us that we are the patient advocate. Our primary purpose in life is to protect the patient from harm and to educate them because we have better bedside manners.
This is not the case in every culture I have found however. Specifically in some east Indian cultures I have come to learn that nurse is our one of the bottom respected professions. As a matter of fact lower than a housekeeper, janitor, maid. For whatever reason having to care for the old and sick is not respected. I have run into this discrimination many times in my career and now do not take offense by this. I view it as an opportunity to engage more fiercely with that family member or patient that usually is not getting the appropriate emotional care they deserve as a human being.
I plan to use my law degree in the area of advocacy within the court systems. Although I do this every day through communication and facilitation, I know there are some patients who get caught up in the legal system with no appropriate representation. I have been complemented many times on this natural ability. A recent manager of mine once stated on my review, “I always want you on my side and God help me if I am up against you on a patient issue.”.

http://news.yahoo.com/s/ap/20081119/ap_on_he_me/med_artificial_heart

Please see the above article in which a young girl was kept alive on a heart machine for over 100 days while waiting for heart transplant. The machine is approximately the size of a photocopier and pumps the blood through the body.
In light of our discussions recently in regards to the donation prosthetic process and lack of available organs, I am thrilled to see this successful piece of medical technology. I feel it is only a short matter of time when we are able to produce medically sufficient man-made organs. I believe that going further with stem cell research and DNA transfer will only expedite the process.

Jennifer B.

Save the Cord - Non-Controversial Source of Stem Cells

Cord blood is blood left in the umbilical cord or placenta after childbirth that is said to be a non controversial source of stem cells. Cord blood banking seems like a promising way to ensure that stem cells will be available for future medical use, partly because the procedure is easy and non-invasive, and it does not interfere with the childbirth process in any way. Women who choose to preserve cord blood have the option of donating their cord blood to a public bank, or paying to store it in a private bank for later use exclusively within their own family.

In the case of private banks, when a donor or immediate family member has a disease that requires a stem cell transplant, cord blood from a newborn bay in the family may be the best treatment option, as it will be a perfect match for the donor and has a 1 in 4 chance of being a perfect match for a siblings.

Unlike bone marrow transplants, which require a perfect match, cord blood transplants only require 3/6 Human Leukocyte Antigens (HLAs) to match. Cord blood is unique in this respect because it is the “youngest” source of stem cells and, thus, readily accepted in to a recipient’s system.

Save the Cord Foundation (www.savethecordfoundation.org) is a non-profit organization that was started by co-founders Charis Ober and Anne Sarabia. Both women graduated from the University of Arizona, and worked in the biotech and pharmaceutical industries before starting the foundation. They were motivated to start the foundation after visiting a public cord blood bank in Tucson, AZ, and meeting children with leukemia and sickle cell anemia whose lives had been saved with cord blood donations. Save the cord aims to make the collection of cord blood the standard of care in hospitals across the nation, and to make public cord blood banks a national priority.

Cord blood seems like a promising solution for stem cells. Are there any mothers contributing to this blog who have donated or preserved their cord blood? If not, did you know about the option at the time of giving birth? Thanks for any input!

Why Discussing Limiting Medicare Benefits for the Elderly Is Worthwhile

While browsing the opinion section of the New York Times, I came across an interesting editorial about limiting benefits for senior citizens in order to make health care more effective. The article, by Daniel Callahan, can be found here: http://newoldage.blogs.nytimes.com/2008/11/13/heart-surgery-how-old-is-too-old. Callahan, in essence, argues that we should limit expensive treatment given to the elderly in order to cut costs upon the Medicare system and avoid otherwise necessary increases in taxes.
Callahan succinctly explains the burdens levied upon the Medicare system by expensive treatments for the elderly. While I believe some will find that assessing life-saving treatments as “burdensome” or perhaps “wasteful,” as Callahan certainly implies, the cold numbers are extremely persuasive. And they should at the very least not be overlooked. So let’s examine the numbers. The Medicare program cost $429 billion in 2007, and has a 7% annual cost increase. Thus, by 2017, it should cost $884 billion. Most importantly, by 2017, the Medicare program will be bankrupt.
Now, how do expensive treatments for the elderly factor in? While Old age itself is certainly not a barrier to coverage. In fact, the average age of those undergoing heart surgery, organ transplantation, kidney dialysis, and cancer treatment is continually rising, Callahan explains. Essentially, science is finding ways of keeping the sick or weak alive longer. It is important not to forget that just a few decades ago, the methods used to keep people alive were not even dreamed of. Significantly, not only are people staying alive longer, but many elderly people are opting for expensive, aggressive treatments, even when the likelihood of success is dismal. I personally do not blame anyone for this decision; if your life is on the line, wouldn’t you opt to try to extend it? But the fact remains: people aren’t likely to simply roll over and die. If treatment is available, they’ll want it.
Thus, the effect on the system is significant. Callahan writes that the average Medicare recipient has to spend between $5,000 and $10,000 for treatment not covered by the program. Doctors are becoming reluctant to take on elderly patients because they are often poorly reimbursed. Out of pocket costs for drugs and co-payments are expected to jump anywhere from 31 to 60 percent in 2009 alone. Therefore, if I interpret the numbers correctly, it seems that not only is the system going bankrupt, but recipients are facing significant price increases or will have to pay out-of-pocket because the system itself cannot afford to treat them.
In light of these numbers, Callahan argues that limiting benefits based on age should be done, because it is not likely that the other possible fix (raising taxes) will be seriously considered in the near future. I thought the most important part of Callahan’s argument was the simple fact that he acknowledges that age-based rationing will not be accepted. Thus, I think he effectively removes that contention from the argument. However, his point is that we can’t completely factor out cost and age from the equation. Congress has refused to allow Medicare to take costs into account in its coverage decisions. But should it play some role? Should age? Callahan’s answer is emphatically yes. I agree with Callahan’s sentiment that our society “can not, and should not, promise open-ended, progress-driven medical care that is indifferent to costs.” Because in the real world, age does matter. It matters in that there are more and more elderly people undergoing expensive care, putting increasing burdens on a system that is already on the brink of collapse. This is a practical way to save money. This is not a proposal to eliminate access to benefits for the elderly altogether. It's a proposal that cuts extremely expensive treatments that likely either won't work or won't work for long. And freeing up cash helps the system. And, although now I am editorializing, I wonder: at the end of the day, what is better? A functioning system that, admittedly has its flaws and is imperfect? Or no system whatsoever? I say an imperfect system.
Keep in mind, age isn’t the only factor. Likelihood of success, cost, and patient wishes should all weigh in. Perhaps a government-regulated healthcare system would solve ALL of these problems? But we’re not there yet, and I think it is important to try to make our system work until we get there. I think Callahan’s point is that we need to consider solutions that may not be popular or pleasant, not because they will ultimately be implemented, but because they are often realistic and therefore, a reasonable starting point to formulate serious solutions.

America Shrugs at Being Fat

The fattest city in America has just been named, and apparently it "shrugs" at that moniker. This makes me think long and hard about how a city in America, a country so weight-obsessed, can be as nonchalant about being called The Fattest. Professor Pasquale's lecture about image-obsession reminded me of how beauty throughout history has been paralleled with wealth. Huntington, West Virginia, the aforementioned unhealthiest city in America, also has a poverty level worse than the national average. With the economy in the state it is, will the future of America's health suffer as dramatically as the stock market? And if so, how will the health care system adapt? The economy is sickening the hospitals in the U.S. Decline in elective procedures and admissions, and patients who cannot pay for care have left hospitals in an economic slump. Poor times call for cheap measures, for sure. Kentucky Fried Chicken's $10 Challenge is no help. A KFC commercial challenged a family in a grocery store to put together a dinner for $10 or less that was comparable to the KFC $9.99 7-piece value meal. Access to health seems to be as big of an issue as access to health care.

Huntington leads the nation in a half dozen other ailments too, including diabetes, heart disease, and tooth loss. I wonder how a city that is so evidently health-poor can just not seem to care? When did being healthy become associated with being rich? When did health become a luxury? Americans pine after having the newest thing, and despite the economic situation, people will keep shopping. KMart reinstated layaway just in time for the holidays. But people don't seem to want to spend that money on healthier foods -- the apathy is there, and it doesn't seem to be going anywhere. Not even the mayor of the fattest town in America seems to want to do anything about it.

In Mauritania, fatter women are considered beautiful. Young girls in rural areas are forcefed until they vomit in order to attain this goal. This, on a continent with with 50% of the population living below the poverty line, seems reflective of the trend that wealth equals beauty. In India, even in the most rural areas, the poorest of women wear a piece of jewelry because that represents her beauty. However, even with America's economy plummeting as it has, that desire for beauty in the U.S. seems to fade. Priorities change, and rightly so, but the desire to preserve one's health, the most basic human instinct, has seemed to vanish from the American psyche. One would think being called the fattest city in the entire country would be a wakeup call, but when the reaction is no more than a shrug, I worry.

Please Make Me Look White?

An issue was raised in class a couple weeks ago regarding the trend that in an effort to appear more white, Asians were demanding plastic surgery. I’ve often questioned this idea and wondered if it wasn’t instead a misperception perpetrated by the media.

Consider for example the argument which posits that the reason Asians flock to plastic surgeons for double eyelid blepharoplasty is to achieve larger, rounder, Caucasian eyes. It seems like a post hoc argument to me (hearkening back to the LSAT, it’s a necessary but not sufficient condition). Associating the rise in blepharoplasty procedures with the rise in Western media influence is certainly plausible, but it’s not an entirely sound argument.

I’m not discounting the fact that the media plays an enormous role in shaping perceptions of beauty, but I think that it’s just as important to look to the underlying evolutionary basis (that crosses cultural lines) behind plastic surgery trends. Obviously there’s much interplay between these two, but when it comes to this debate I often see the focus on the aforementioned cultural imperialist notion rather than on evolutionary reasons.

It seems almost universal that humans are drawn to big eyes—notice our penchant for babies, puppies, and kittens. Big eyes are associated with youthfulness, as evidenced by the popularity of brow lift procedures in older American woman seeking to “open up” their eyes. And seeing that there are almost four billions Asians in the world there are obviously those with varying eye sizes.

After college, I lived in Taiwan for a couple years and traveled extensively throughout Asia. I met a few people with plastic surgery, but none would say that getting their eyes done made them look more Caucasian. In fact, the surgery allowed them to look more like other Asians who had relatively larger eyes. Naturally occurring double eyelids are prevalent in those from the southern part of China and Southeast Asia, and to a lesser extent (but not uncommon) in Northern Chinese, Koreans, and Japanese.

Another issue that is often discussed is the fixation with skin lightening. Again, I’m wary of the media’s conclusions that it’s just another example of Asians desiring to look more Caucasian. Throughout the centuries in Asia, dark skin has been frowned upon because of its association with toiling under the sun and menial labor—thus, the reason fair skin is generally desirable.

I just had to throw it out there, but there are plenty of other reasons Asians prefer bigger eyes or lighter skin and it may be due to reasons other than trying to look like their Western counterpart. It’s more likely that their reasons for doing so are more similar to the reason Westerners prefer bigger eyes.

When two cultures collide there’s bound to be misperceptions. As someone who embodies both Asian and American cultures and has lived on both sides of the world, I think it’s important to take what you read with a grain of salt-- there are obvious reasons which needn’t be mentioned here why the Western media’s portrayal of the East is skewed (as with the East’s portrayal of the West).

Ellie

Misleading Research From Industry?

By John Tierney
http://tierneylab.blogs.nytimes.com/2008/10/30/misleading-research-from-industry/
In 2005, The Journal of the American Medical Association cited “concerns about misleading reporting of industry-sponsored research” to justify its stricter standards for any such research to be considered for publication. The new policy, requiring researchers with no financial connections to the sponsor to vouch for the data and perform statistical work, was promptly criticized in an editorial in The British Medical Journal as “manifestly unfair” because it created a “a hierarchy of purity among authors.”
Now some researchers have looked to see what kind of hierarchy actually exists. After analyzing weight-loss research conducted over four decades, they’ve found that the quality of data reporting in industry-sponsored research does seem to be different from that in other research: It’s better.
The researchers found that the quality of data was significantly better in industry-supported research than in nonindustry-supported research, particularly in studies involving drug treatments. The researchers conclude:
This suggests that, while continued efforts to improve reporting quality are warranted, such efforts should be directed at nonindustry-funded research at least as much as at industry-funded research. A benefit of the greater funding offered by industry, the greater scrutiny of industry, or perhaps greater concern or training of industry personnel for rigorous reporting may be an enhancement of the overall reporting quality in the literature, at least for long-term weight-loss studies.
The author’s colleague Gina Kolata recently reported that some prominent medical researchers are starting to shun any financial support from industry — not because they think it leads to bad research but because they’re tired of having their integrity impugned. These ad hominem attacks have become routine against anyone or any group receiving industry money. In light of the new study, the author worries what will happen if the best scientists become afraid to work with the sponsors that can afford to pay for the most thorough studies. What happens to the quality of future research? And should this new study give pause to JAMA’s editors? By stigmatizing industry-sponsored research, is their “hierarchy of purity” doing more harm than good?
This article only mentioned obesity studies, but it seems to suggest that other industry funded studies are superior to their non-industry funded counterparts. It shouldn’t come as a surprise that well funded research provides better results regardless of who’s footing the bill - even organizations with an agenda value solid research. Maybe articles like this will help lessen the stigma of working for “the man.”
EEM

Woman who got HIV from kidney transplant sues University of Chicago Hospital

A woman who contracted HIV and hepatitis C from a kidney transplant sued the University of Chicago Medical Center and one of its doctors on Monday, saying they should have told her the organ donor was gay.  In November, she was asked to come back to the hospital because 3 other people who had received organs from the same donor had tested positive for HIV.  She said she was not told at the time of the transplant that the donor who was killed in an automobile accident had engaged in male-to-male activity, but that had she been told of this, she would not have gone ahead with the operation.

The U.S. Centers for Disease Control and Prevention guidelines say that gay men who are sexually active should not be organ donors unless the patient is in imminent danger of death.  The guidelines also say patients should be informed if a donor had engaged in homosexual activity.  I wonder how fair this policy is.  I understand that high-risk activity is not to be taken lightly, but what about gay men in monogamous relationships with people who are not HIV-positive?  

I know of the patient who received the heart from this same donor.  He was on the verge of death prior to the transplant.  His quality of life after the transplant was far better than it was prior to receiving the heart, and he believed he would not have had the opportunity to feel better again and to live longer without the operation.  He did not have sex with his wife between having the operation and finding out he was HIV positive.  He did not blame the hospital or the physicians and he did not intend to sue them.  

HIV tests require one week to get the results back, and organs would be dead by that time, and therefore useless to the recipients.  What if a hospital has no way of knowing if a donor has engaged in high risk activity?  I know many physicians who find this scenario horrifying -- the potential of being sued for yet another situation that they may not be responsible for.  

This situation is unprecedented for hospitals and physicians alike.  Nothing like this has ever happened before, there are no studies or lawsuits regarding this scenario, and its results are potentially devastating, both for the hospitals as well as for the patients and their families.  There is a question of what the patients' quality of life will be, since many of the medications that donor transplant recipients will be on stimulate white blood cells, which HIV medications do as well.  HIV drugs have become quite effective, and the lifespans of infected persons are longer now than ever before.  The patients potentially could feel well and live another ten to twenty years because of the medications, which they may not have had the potential for prior to receiving their organs.  For the heart recipient, the infected heart gave him more time to live. 

I am curious to see how many millions of dollars this woman will make...

Implications of BRCA1 gene mutation as it relates to In The Family and otherwise...

In preparation for our screening of Joanna Rudnick's documentary, In The Family, I wanted to pass along some information and links to recent articles written on the subject. Although the film is centered around a female of jewish descent, it bears mentioning that surprising new studies have shown the BRCA mutations to have revelance to a wide range of ethnicities, and affects men with prostate and breast cancer as well. On an even larger scale, the documentary points to the dilemmas associated with gene patenting, disclosure, and genetic mutations in general-whether it be a BRCA mutation, or otherwise. The following list of links are by no means all-inclusive, and I invite any and all to add and expand upon those attached below as we try to better understand the gene mutation before Thursday. Thanks.

WHAT YOU NEED TO KNOW ABOUT BRCA1:

BRCA1 stands for "breast cancer 1, early onset," and belongs to a class of genes known as tumor suppressors. Like most tumor suppressors, the protein produced by the BRCA1 gene helps prevent cells from dividing too rapidly or erratically. Specifically, the BRCA1 gene is essential for providing instructions for producing proteins involved in repairing damaged DNA. To date, researchers have identified more than 1,000 mutations of the BRCA1 gene, most of which are associated with an increased risk of breast cancer.

IN THE FAMILY INDEED:

http://news.yahoo.com/s/ap/20081117/ap_on_he_me/med_breast_cancer

As the article linked above asserts, a family's medical history may be a more accurate indicator than genetic screening for breast cancer. Although BRCA1 and BRCA2 are considered aggressive hereditary mutations, the problem emerges when female relatives test free of the mutation in the belief they are not still at risk. Dr. Steven Narod stresses, "family history is a much stronger predictor regardless of what gene tests show." Of 1,500 women tested from 365 cancer-prone families who had nonetheless tested negative for both mutations, the group still had a four-fold higher risk thatn average women of developing breast cancer. The report goes on to remind that the $3,000 BRCA tests are still generally well accepted but newer tests will be available soon that will be more available, less expensive, and hopefully, more accurate.

In the meantime, I would argue that the importance of sitting down with one's family and hashing out the good, the bad and the ugly of shared medical history cannot be over- emphasized.

WHO SHOULD GET TESTED:

Traditionally, the BRCA1 mutation has been to known to be more prevalent for Ashkenazi Jews, and recent studies have shown that Ashkenzi women with breast cancer had the highest BRCA1 mutation of the ethnic groups studies, at around 8.3%. However, the same study (cited below) also showed the mutation is widespread among Hispanics and young black women as well. A research scientist at the Northern California Cancer Center in Fremont and assoc. professor of health research/policy at Stanford, Ester John reported that Hispanic women had a higher chance of carrying the BRCA1 mutation than caucasian women, but that young black women carried the most alarming rate. For all black women the rate of the BRCA1 mutation was 1.3%, however of that subsection under 35 who had breast cancer, the rate skyrocketed to 16.7%.

John's research appears to be backed up by Dr. Christine Pellegrino (NYC) who said that the findings mirror what she's seen in her clinical practice. Pellegrino supports a widespread program of genetic counseling for young patients and genetic screening for all women and female relatives who develop breast cancer at an early age.

http://health.usnews.com/usnews/health/healthday/071226/brca1-mutation-prevalent-among-hispanic-younger-black-women.htm

Given that the 2007 findings were surprising to even the specialists, it might not be overly presumptive to encourage screening for women with known, higher than usual rates of risk for breast cancer. In realizing that option is more or less taking the easy answer, I still would rather error on the side of caution and too much data, rather than not enough.

AND THIS FROM MYRIAD:

http://www.myriadtests.com/provider/brca-mutation-prevalence.htm

BRCA NEWS FOR MEN:

Men with a strong family history of prostate or breast cancer also experience BRCA related dangers. As cited by the attached link below, prostate cancer caused by a BRCA2 gene mutation are more than twice as likely to die from the genetic disease than those carrying the fault BRCA1 gene mutation. The study found that carriers of the BRCA2 gene were found to live for an average of four years compared to an average of eight years for BRCA1 carriers. While the information is unsettling, it does help to tailor future therapies and treatments, especially in treating the lethal BRCA2 mutation.

http://www.news-medical.net/?id=39490

Again, the above articles and information is a slim fraction of what is available on the BRCA mutations and I invite anyone to supplement this thin offering. Thanks, JWD.

Specialty Hospitals

After class the other evening, I was wondering about the specialty hospitals we spoke of briefly and had some questions about their existence. From what I have read, the only types of specialized hospitals that exist are ones that specialize in cardiac, orthopedic, and general surgery. There are very few of these hospitals and are typically geographically located in a small area (Kansas, Oklahoma, South Dakota, and Texas). The major issue surrounding these hospitals is the fact that many claim they are taking away the most profitable and generally easier cases from community hospitals. This argument relies on the fact that patients at these hospitals are generally insured on other policies than Medicare and are not in highly emergent situations. While I definitely understand that community hospitals rely on insured patients for much of their funding to cover uninsured patients and patients with Medicare that does not pay as much, specialized hospitals really do not seem to have anything to do with this problem other than they are taking some of the insured patients away. Therefore, it seems that the overall complaint with specialty hospitals is not going to be addressed by not allowing them, but by correcting the payment problems at community hospitals.

I think that patients should have a choice in where they receive their care and not be forced to make up for losses that are incurred elsewhere. As I was reading this article, I could not help but think of nationalized healthcare. A nationalized healthcare system would correct the problem of uninsured patients and also presumably help Medicare type insurance pay more money. However, a nationalized healthcare system is bound to have a privatized option that will take the same form as a specialty hospital.

A further issue that is raised in the article is the one of conflict of interest of a doctor’s who own hospitals. However, with this point, the article cites statistics that state the doctors individually only own very small parts of these hospitals, 1% per physician. Also, with cardiac specialty hospitals, physicians only own 34% of the hospital on average. These seem like small numbers to be creating conflicts of interest. A further point is that it seems like a far stretch to be saying that physicians are performing surgeries that they otherwise would not be because they own a small part of the hospital. This argument would make much more sense in a different field like dermatology (which by the way is a specialized practice usually that is owned by physicians). To me, it makes more sense that a dermatologist might prescribe is different medication that they profit more off of rather than a different option that is cheaper well before a cardiac surgeon performs a procedure on someone’s heart that is unnecessary. While the cardiac surgeon might also prescribe a different medication, that is a different point and will exists no matter where the physician is working.

In the end, I definitely do not know much about specialty hospitals, but these were just a few thoughts I had. The last thing that I thought was interesting was a website for a specialty hospital that claims:
"Some day all hospitals wil be like this."

Girls Wins Right to Refuse Heart Treatment

On Tuesday, November 11, in the U.K., thirteen year old Hannah Jones persuaded her hospital to abandon the legal proceedings that could have potentially forced her to have a heart transplant against her will.

Hannah was diagnosed with leukaemia at the age of five and was given a high-strength drug to kill off the infection that also caused a hole to develop in her heart. She was left with severe heart damage that requires treatment with a combination of drugs and a special pacemaker. After being told the only solution was a transplant, Hannah decided against it because there was a strong chance she would not survive the procedure and, if she did, the leukaemia could return. The new heart would also last only 10 years at best and she would need constant drug treatment. In the end she decided to return home to Marden near Hereford under the expert care of her mother, a specialist nurse.

But in the complex right-to-die case, her local hospital began High Court proceedings to temporarily remove her from her parents' custody to allow the transplant to go ahead. Hannah was required to plead her case to a child protection officer. Hannah told doctors and the officer that she believed the treatment was too risky and that she would prefer to enjoy her remaining days in the company of family and friends. Hannah's plea was ultimately compelling enough to convince the child protection officer to take her side, and persuade the hospital to back down.

Hannah's story poses another layer to the right to die question that makes it even more complex. The primary factor that makes this decision is difficult is the fact that Hannah is not an older adult individual who has suffered from a painful terminal disease their entire life. Rather, Hannah is a young girl, with potentially her entire life ahead of her. Her choice in this matter is one of quality of life, and I do agree that she (and her family) should have the right to make that final decision. However, I can also see the hospital's conflict in that they want to do everything they can to save the life of this girl. The family may not have the entire medical know-how of the experts at the hospital to fully evaluate the risks possibilities they are facing. Additionally, the hospital may be able to evaluate the situation from a purely medical standpoint of whether the procedure is too risky or not, while the family may be too emotionally drained from all the years of distress they've faced throughout the course of Hannah's medical treatment. Ultimately, I feel that the resolution taken is the correct one, to follow the wishes of the patient and her family. However, I definitely understand how difficult it must be for hospital staff to stand back and do nothing while this young girl with her entire life ahead of her chooses to die, especially when there are existing viable medical alternatives out there that may possibly save her life.

Story at: http://www.independent.co.uk/life-style/health-and-wellbeing/health-news/girl-13-wins-right-to-refuse-heart-transplant-1009569.html

With Friends Like These, It's Best To Get It All Down in Ink, Or How Sobchak and Kaufman Killed Surrogate Decision Making

In recent classes we've debated the topics surrounding surrogate decision making from acting on advanced directives to substituted judgment standards in the context of end-of-life determinations. We haven't yet tackled the same decision making questions that arise for surrogates when a loved one dies before stating precisely how and what the ceremony of remembrance might be. However, to keep it light, I'll offer as exhibits, scenes from popular culture that might shed light on why the state might not be crazy about granting family and friends the final say. Specifically, I would like to look at the untimely passings of Donny Karabotsos and Gram Parsons.

In the penultimate scene of the Coen Brothers' cult classic, The Big Lebowski, Walter and The Dude perform the last rites of their dear friend, Donny. Despite his generosity, loyalty, and other personality traits that would have made him the perfect Thurbian, hen-pecked husband or ever prudent older brother, poor Donny has apparently died without family members through blood or marriage. Therefore, the Falstaffish Walter Sobchak serves as master of ceremony on a stage made of beach dunes to an audience of one, The Dude, thus:

"Donny was a good bowler, and a good man. He was one of us. He was a man who loved the outdoors... and bowling, and as a surfer he explored the beaches of Southern California, from La Jolla to Leo Carrillo and... up to... Pismo. He died, like so many young men of his generation, he died before his time. In your wisdom, Lord, you took him, as you took so many bright flowering young men at Khe Sanh, at Langdok, at Hill 364. These young men gave their lives. And so would Donny. Donny, who loved bowling. And so, Theodore Donald Karabotsos, in accordance with what we think your dying wishes might well have been, we commit your final mortal remains to the bosom of the Pacific Ocean, which you loved so well. Good night, sweet prince."

And after butchering Hamlet, Walter empties the coffee canister serving as an urn against the wind covering both The Dude and himself with Donny's remains. Now, while Walter claims to be acting in accordance with what he thought Donny's dying wishes might have been, suffice it to say such wishes probably didn't include being dusted over his friends' faces after an evocation of Nam flashbacks. In the Dude's own words, "With friends like these...."

Rock'n'Roll has had its fair share of morbid death scenes, but the passing and subsequent events surrounding the death of Gram Parsons has to be the most bizarre. After founding the Burrito Bros., composing the Byrds' best album and writing songs for the Rolling Stones, Gram Parsons came back to California to get clean. That's right...came to California to get clean. By the late 1960s, Parsons would routinely disappear in the desert near Joshua Tree while under the influence of psilocybin or LSD. On the last occasion he was accompanied by Margaret Fisher and the infamous rock'n'roll roadie, Phil Kaufman. Tragically, Parsons died at the age of 26 from a lethal combination of morphine and alcohol. At this point things get strange.
Prior to his passing, Parsons was reported to have said that he wanted his body cremated at Joshua Tree and his ashes spread over the prominent Cap Rock. Parson's stepfather however arranged for a private ceremony in New Orleans and neglected to invite any of his friends from the music industry.
Acting on his alleged promise, Kaufman borrowed a hearse and managed to purloin Parsons' corpse from the airport security and drove out to Joshua Tree to commence cremation ceremonies. Needless to say the nincompoop Kaufman was not trained in cremation and instead thought pouring five gallons of gasoline into an open coffin and lighting a match would do the trick.
It didn't. The half burned remains were eventually returned to Parsons' step-family, who claimed that Gram's body was only 60% mutilated. Other reports emerged that Kaufman left 35 pounds of Gram's charred body in the desert. Kaufman was arrested not long afterwards, however since there was no law on the books against stealing a dead body at the time, he was only fined for stealing a coffin.
The lesson to be learned from both accounts is to purchase a Moleskine and a Sharpie and write it all down. Do not leave any important decisions regarding your health or body left to the idiocy of family and friends. Have fun with it...imagine every Edward Goreyian tragedy that could befall you, and the likely and not so likely damages you might suffer...and provide instruction.

http://comunidad.ciudad.com.ar/argentina/capital_federal/visualmix/vonzai/gorey.html

W is for Wyatt who was guillotined by the Deans.
Instruction One: If my head can still listen to music, keep me alive and start shopping my resume.
Instruction Two: If music is no longer an option for me, get me a gig in a John Carpenter film and then off to organ donation or plastination.
Instruction Three: Please do not gasoline and alight me. Please do not powder your faces with me.
Instructions Four: Songs to be played at the wake: "Sweep Out the Ashes in the Morning," "Don't Let the Sunshine Fool You," and "Hey, That's No Way to Say Goodbye."

Begging you to write it all down,
JWD

Keep your Friends Close and Your Surrogates Closer

Slate Magazine has an article about couples using one of their mother's as a surrogate if the wife is unable to carry the child herself. In this most recent case a woman marries, has two children,and a hysterectomy and a divorce and then re-marries. Her new husband wants to have children and all they are missing is the womb. So the wife's mother volunteers to have her daughter and son-in-law's embryo implanted in her.

At the age of 56 grandma gave birth to triplets. It makes sense that if you would entrust someone with your embryo, it should be someone very close to you, and a familial relationship is obviously even better. However the author raises potential sticky situations:

"Motherhood is splintering. You can have a genetic mother, a gestational mother, an adoptive mother, and God knows what else. When one of your moms is Grandma, it's even more confusing."

I think as long as the surrogate is healthy and the doctor approves there is nothing wrong if they are OK with it. While the author thinks it's just plain creepy, it's about as creepy as any surrogate mother relationship, however it's not with a stranger.

FILE UNDER: THIS COULD BE BIG

http://news.aol.com/health/article/marrow-transplant-may-have-cured-aids/246178

Unfortunately (or fortunately as the case may be), I cannot comment on this as of yet...just wanted to pass it along as soon as I could.

JWD

UIC Medical Center Pays $2 Million to United States and State of Illinois to Settle Liver Transplant Fraud Suit

In November 2003, the University of Illinois paid the United States and the State of Illinois $2 million to settle a "whistleblower" lawsuit brought by Dr. Raymond Polak, a liver transplant surgeon and professor at the University of Illinois College of Medicine, that alleged that the University's Medical Center at Chicago improperly diagnosed and hospitalized certain patients and exaggerated the seriousness of their medical conditions to liver Status 1 - confined to intensive care and likely to die within 7 days, and liver Status 2A - chronic liver disease with sudden deterioration, in intensive care, and likely to die within 7 days, to allow them to become eligible sooner for liver transplants.  The suit was brought under the False Claims Act and the Whistleblower Reward and Protection Act.  Similar allegations were settled around the same time with the University of Chicago and Northwestern Memorial Hospitals.  Dr. Pollack received 25%, the maximum allowed by the law, of the total settlement proceeds, which added up to be over $500,000.  UIC also payed $300,000 for Dr. Pollak's attorney fees, expenses, and costs.

The suit alleges that the improper hospitalization and diagnoses enabled UIC to transplant enough patients to meet the minimum number of liver transplants necessary to be certified under the Medicare and Medicaid programs, thus enabling it to receive federal and state reimbursement for the procedures.  Illinois Attorney General Lisa Madigan said, "A hospital's desire to receive additional state and federal health care dollars should play no role in whether or not a patient is eligible for an organ transplant...Not only did the defendant defraud the state and federal governments, it endangered individuals. These actions are legally and morally wrong."

This case reminds me that, although hospitals should be examples of high integrity, places where people are born and lives are saved, they are just like any other place of business, motivated by money.  Are these hospitals any better than the organ black market?  Aren't they both run by a thirst for monetary reward rather than by a regard for life?  Neither in this case have respect for federal laws and systems in place, such as the Organ Procurement and Transplant Network and the United Network for Organ Sharing, which are designed promote the most ethically fair and logical processes of organ donation.  What separates other rogue operations from those that on the surface appear to be on the patients' side, but which choose not to abide by rules that promote life?

Although the settlement contained certain "integrity requirements" in addition to payment, I wonder how much integrity a hospital can regain after such gross indiscretion.  How long will it take to regain the public's respect and trust, when the place in whose hands a person puts his or her life turns out to have such disregard for them?  A hospital's walls are filled with people who have taken an oath to promote and protect human life, and it saddens me tremendously that those lives were manipulated just to make the cut and to make a buck.

The case is United States of America and State of Illinois ex re. Raymond Pollak, M.D., v. Board of Trustees of the University of Illinois and the University of Chicago, 99 C 710 (N.D. Il.).

http://www.usdoj.gov/usao/iln/pr/chicago/2003/pr111703_01.pdf

AD

Septuagenarian Gives Birth to Twins Via IVF!

While browsing websites this afternoon, I stumbled across an article from this summer (July 24, 2008) that actually went as far as to shock my conscience. Thus, I decided to throw it out here, because I’d love to see what kind of reactions this piece evokes from everyone else.

In July, Omkari Panwar gave birth to twins, a boy and a girl, at a hospital in India via in vitro fertilization. What is newsworthy about this? What shocked my conscience? Mrs. Panwar is 70 years old, and her husband is in his mid-seventies. The article, which can be found at: http://www.msnbc.msn.com/id/25837220, goes on to discuss the origins of in vitro fertilization (IVF), but for the purposes of this blog, if your curiosity is piqued, you can read about the origins in the original article, for I am not going to address that here. What the article deftly highlights, however, is how the fears associated with IVF have changed since its inception. Initially, there were worries that IVF would produce deformed babies and that it was unsafe. Today, the fears are an entirely different monster, as highlighted by Omkari Panwar’s story. When is IVF okay? Who decides? Should the child’s rights be factored into the decision? Should the parent’s motives?

Admittedly, the Panwars’ case has another layer to it. The Panwars sought to have additional children as septuagenarians due to the cultural bias in India that sons are better than daughters. It is not that the Panwars have had boys in the past; they have female daughters and even female grandchildren. But now they wanted a boy. While I try to view this in a light most favorable to Mrs. Panwar’s plight, and while I struggle to realize that the cultural value judgment placed on her shoulders must indeed be significant if she was ready to go through childbirth again at the old age of 70, I cannot feel anything but remorse for her newborn twins. Her children are likely to lose their parents anytime in the near future. And even if the Panwars are lucky enough to live extremely, extremely long lives, will they really truly be able to care for their children in 10 years? Maybe even in 5 years? Raising children is something that is exhausting for parents forty years younger than the Panwars. Can these stark facts really be outweighed by the fact that Mrs. Panwar’s culture emphasizes the value of male children? Resoundingly, I say it cannot. I am appalled at the selfishness of their decision.

So this gets back to my initial questions. Who should decide when IVF can be used? Is it entirely the right of the parents to decide? Should the doctors be in a position to refuse treatment to potential parents? And if so, under what circumstances? Can they look to the parents’ motives? This would place an immense burden on doctors to make value judgments about people and families. Is this fair? I think not. But I do think there needs to be some sort of check on the parents’ access to IVF, if only for very special cases like this one. Perhaps legislation is the best route (I think it’s the only feasible one) to restrict IVF from being used in certain cases. Defining the law would be incredibly difficult and would not doubt meet significant challenges (I can foresee the due process claims being filed already…), but does this situation not demand some sort of scrutiny? I think it does. This entire scenario just reinforced to me, the casual reader, how issues with new treatment, technology, and so on, evolve, and frankly, can become more troublesome than at the outset.

The Diving Bell and the Butterfly

Reading the case McKay v. Bergstedt reminded me of the movie The Diving Bell and the Butterfly, or Le Scaphandre et le papillon. It is the heartwrenching true story of French Elle editor-in-chief Jean-Dominique Bauby who, in 1995 at the age of 43, suffered a stroke from a cerebro-vascular accident that left him in a state of total paralysis, incapable of any verbal communication, in what is known in the medical community as "locked-in syndrome." Only his left eye wasn't paralyzed. His mental faculties totally intact as he lay motionless in his hospital bed, Bauby learned to communicate with the outside world using his left eyelid, the only part of his body over which he still had any control. During the next fourteen months, using a communication code developed by his therapist and his publisher's assistant, who transcribed this code, Bauby was able to compose, letter by letter, a memoir of his life struggle eloquently describing the aspects of his interior world, including the psychological torment of being trapped inside his body. Bauby died in 1997, two days after its publication. The movie, which is based off of Bauby's autobiography, was nominated for 4 Oscars, and won the Golden Globe for Best Foreign Language Picture and Best Director.

Immediately after watching this movie, all I could think about was the rights of mentally-competent quadriplegics. Throughout the movie, you grow to understand and feel Jean-Do's frustration, anger, and sadness as he lays in bed, unable to tell the nurse when he did and did not want to watch tv, unable to tell his children he loved them, constantly remembering his old life. He wanted to die. He repeatedly gave this sentiment, but everyone around him refused to let him give up his life. He eventually spent his days recounting his life story, but many people in his situation do not have this opportunity. It made me weigh the balance between desperately wanting to die because life has nothing more to offer, and using your days to be productive in whatever capacity you can. The world is a better place because of Bauby's memoir. The Diving Bell and the Butterfly is truly a piece of art. I believe a person has the right to choose when he or she can die, especially in such a solemn situation. However, general society usually begs to differ. It makes me wonder if the quadriplegic community should enlist help from the medical and legal communities to establish their rights in a formal manner.