“It’s Very Hard to Come to the Realization That You’re Dying”

February 13, 2015, 7:35 pm ET · by Tim Molloyhttp://www.pbs.org/wgbh/pages/frontline/health-science-technology/being-mortal/its-very-hard-to-come-to-the-realization-that-youre-dying/

Should FDA make experimental drugs available for terminal patients? - posted for Awad

Should FDA make experimental drugs available for terminal patients?

A growing number of states are proposing laws to allow terminal ill patients to have access to experiential drugs prior to FDA approval and it’s called the "Right-to-try" law. Five states have already "Right-to-try"— Arizona, Colorado, Louisiana, Michigan and Missouri, according to the National Conference of State Legislatures.Twenty-five more have proposed similar legislation.

Also, the FDA proposed a change in their policy to allow terminal patient to have access to experimental drugs if their physician fills a form that requires 45 minutes to complete rather than the current process that takes a 100 hours approximately 3-4 months to finish. Many doctor such as Doctor Gorski, expresses his concern due to drugs merely having passed phase I trials is not enough to determine whether a drug is safe, since these trials are based on small sample sizes, often of less than 30 patients, and are only meant to determine the maximum tolerated dosage of the drug, as well as any obvious side effects. Moreover, he adds, "Most drugs that pass phase I never make it to market, and it's not at all infrequent for serious toxicities and side effects to be identified in phase II and III trials." In addition, Dr. Arthur Caplan, says that, “"Experimental drugs can make you die quicker or you can die much more miserably and much more quickly if the drug is bad." My report is about the positive and negative outcomes from making an experimental drugs available to terminal patients.

(posted for Awad)

Steroids (1 of 3) - Ramsey Ferguson

Posted for Ramsey Ferguson

Final Blog Post (1 of 3)

I would like to use my final blog posts to reopen the discussion on steroid use/abuse. I

know the midterm reports were very long winded and even then I feel like some people may

have been tired of one group talking and not gotten possible questions answered.  I’ve read up

on it a lot (admittedly on the internet so how reliable is that), but I also heard/know of several

personal accounts of people using anabolic steroids.

The biggest issue I see with people using steroids, aside from the fact that they are

illegal, is the abuse where they do not cycle off properly. Many people use steroids with little or

no unwanted side effects when they run a reasonable length cycle, and when they come off of

them and stay clean for long enough to let their body get a break from them.  These same

people could possibly face complications down the road, but a lot of the big cases you hear

about where there are serious side effects come from years of steroid use with very little or no

cycling off.

Another serious problem with steroid use today is that the correct dosage/cycle length

really is not set in stone. This makes me pose the question  ‘If people are going to use steroids

(legally or not), and they can be used without people suffering serious side effects, then should

research be done and credible resources be available to those to help minimize the risk

associated with steroid use?’ This idea would gain a lot of opposition because if you published

something informing people of what a bad cycle consists of (dose, length, stack, specific

steroid) and warned them against it then some may take that as you promoting the “safe” use of

steroids. I do believe, however, that as steroids are gaining popularity among more common

people and not just the big bodybuilders that some type of education could be utilized and

possibly help us with healthcare costs down the road by lowering associated health risks in this

fashion.     Let me know what you think!!

Ramsey Ferguson

Transhumanism: Humanity’s Past (Devin)

Posted for Devin A.

Transhumanism: Humanity’s Past

Humans are unusual among the animal kingdom. While a few rare species

use tools, none do with such regularity and proficiency as we do. Other species are

undoubtedly faster and stronger, yet we undeniably skyrocketed to the top of the

food chain. It didn’t take long before natural selection was only a factor outside our

species, not within it. We began evolving, in a sense, by altering our own

capabilities, rather than letting nature do it slowly over millions of years. Where a

stingray eventually evolved a dangerous barb to attack with over the course of

millennia, we simply tied a pointy rock to a stick and called it a day. And it worked!

It didn’t matter that a tiger was stronger and had sharp claws, we wanted to kill the

big hairy elephant. And unlike the tiger, we managed it. Humans were soft and

small with no claws or horns, yet we managed to improve ourselves.

Fast forward to the earliest recordings of civilization and we start to hit on

one of the biggest advancements to humanity: writing. This was like an external

hard drive for our brains, vastly multiplying the amount of knowledge we could

store. In a sense, it was the first mental augmentation for humanity; we improved

our memories beyond what could be previously imagined, even across generations.

And much like many advancements today, there were skeptics and worries about

this new technology. Today we have no writings directly from Socrates, only what

Plato wrote about him, and for good reason. In Plato’s dialogue Phaedrus, Socrates

criticizes the concept of writing, arguing that nothing of value can be gained from it.

He said knowledge could only be gained through dialogue and banter. Worse yet,

with everyone writing everything, our natural memories will decay and people will

no longer be able to recite Homer’s plays. In a sense he was right: you’d be hard

pressed to find anyone today that can recite The Odyssey without a book in front of

them. However the need for it is gone. We improved ourselves beyond what was

previously imaginable, and the implications at the time were hard to fully

comprehend without being raised with it.

This cycle of advancement and skepticism has continued for all of human

history. A more recent example takes us to classic science fiction, Frankenstein.

This story capitalizes on very real fears at the time with medical experiments

involving electricity (although Shelley herself may have had other ideas, but that’s

better left for a literature class). Today defibrillators rarely bring to mind the

thought of Frankenstein’s monster. However our history is full of fear of the

unknown future our advancements bring. We worry we might lose out on

something that makes us human and instead become monsters. However to be

more than human is to be human. Our earliest ancestors were different from other

animals not because they were slightly less hairless, but because of their intelligence

and ability to move beyond their limitations. And as our limitations lessen, the

question of personhood evolves.

The next posts will more clearly define what transhumanism means today

and how it will look in the future, but for now I thought it would be wise to frame it

with some perspective on our past. To lighten the mood a bit, I thought I’d share a

relevant comic:

Euthanasia Post# 1

Final Blog Report Post #1

Euthanasia

Right to die laws have been a right in many states for the past 10 years, with other states still battling over the passing of bills to allow their states these same rights. In Oregon, Montana, New Mexico, Vermont and Washington terminally ill patients have had access to physician assisted suicide. This treatment is seen by many a necessity that allows them to die with dignity around the ones they love. Others see this legislation as an unnatural death, many arguing that it is often the result of elder abuse. Nevertheless legislation legalizing right to die laws are increasing in support across America and many countries around the world. Euthanasia allows patients the option to be prescribed a medication that induces death from a physician and take it in the comfort of their home whenever they feel it the right time. In many cases the patients never actually take the medication and instead end up die naturally. The choice to have the medicine and ability of being able to take it when they choose is comforting to patients as it allows them the feeling of control over their final days. For many the fear is the loss of autonomy causing them to spend the rest of their days as a vegetable instead of dying with dignity surrounded by family and friends.

Consent: With Your Genes and Your Life

    My report is about consent, particularly in regards to one’s genes.  Biological theft and eugenics are new problems that humans have to contend with, as the idea of being able to pinpoint disorders or understand ones genetic makeup by simply knowing a combination of A’s, G’s, C’s, and T’s is a very new phenomenon.  Biological theft has only recently entered into the realm of law, but has been a problem since the 50s, when Henrietta Lacks had her cells taken without her consent for use in medical research.  They were found to be immortal and therefore provided a very easy and convenient research subject. 

    Gene theft is a continuously growing problem, leading to the need for things such as biological patents and genetic theft laws. Many bioethicists see this as an invasion of privacy, others see it as a way to further knowledge by having a large database with which to conduct research.

    Another problem involving consent that has recently become problematic is eugenics, both positive and negative eugenics. The Nazis are usually invoked any time a talk about eugenics springs up, but many countries had eugenics programs before the atrocious Nazi program came to light, and some countries still have running eugenics programs today.

All of the flags depicted were used as evidence for the Nazis also having a eugenics program, as these countries had programs of their own.

  The Nazi program was the most infamous, as it had the largest scope and killed many more people in a short amount of time. Their negative eugenics program, which is a eugenics program designed to rid the gene pool of deleterious or unwanted genes, consisted of killing Jews, Gypsies, the infirm, and basically anyone who did not conform to their idea of the Aryan race and could also not perform hard labor.  Their positive eugenics program, which is a program designed to infuse the gene pool with the best genes, failed to take off, as the Nazis built family as the core of their ideals, and by selecting only those most like the Aryan race to breed, they were basically saying that the family is only something that pure individuals can attain, a thing that the majority certainly would have protested.

The cost of supporting this infirm man (60,000 Reichsmarks).

England had a short lived positive eugenics program too

    Most countries shut down their eugenics program in the face of what it could become after witnessing the effects of the concentration camps, but some vestiges still remain. For example, 50-60 Belgian psychiatric patients are euthanized every year for purely psychological reasons. Unlike the victims of the Nazis, these patients give full consent, as they have had bipolar or other issues since childhood and after having lived in their condition for 10 or twenty years, they are ready to quit trying to cope.

Love springs from the Ducth word for euthanasia, as they see euthanizing their patients as an act of love.

  The doctors do not like euthanizing people so young (people in their 20s or 30s), but they want to end suffering if to live would only be a daily, unbearable struggle.  In all of these cases, consent is the most important above all, and should be reached in all cases, such as before euthanasia is performed or a genome is procured.

What Exactly is Life?

It was very hard for me to pick a subject but I chose to talk about something I really cherish since my life dream is to become an Ob/Gyn. I will discuss the perspectives of what defines a life. What is the definition of a fetus? It's an unborn offspring of a mammal, in particular an unborn human baby more than eaight weeks old. From this definition, you see the word "unborn" and you would want to ask "If it's not born yet, does it have life?" In class we discussed many perspectives that in some cases, people believe that "life" begins from the first day of conception. In some countries and with religion, this is definitely so. In Korea, upon a child's birth, they are already classified as one years old. In Catholicism, souls are input in children the moment they are conceived. You begin to wonder if "life" begins inside the womb of the mother, then why not make all childrens' birthday's begin at one years old when they came out the womb? The definition of life has definitely aroused many issues and the largest one is about abortion. So what is abortion? It's the expulsion of a fetus through spontaneous miscarriage( the definition that many people do not align abortion with) or artificial induction(what many people recognize the term abortion as). Here are some facts that you would find interesting from the National Right to Life Organization:

1. A heartbeat begins 18-21 days after conception.

2. Brain waves can be detected as early as 40 days

3. During 7 to 10 weeks of pregnancy, a child's face is recognizable.

A heartbeat to many people is a symbolism of having life. Having brain wave activity is a symbolism of thought and emotion. Having a face defines us as a person. It is believed that having these three things definitely makes us alive and human. From an emotional standpoint, it's really hard to see something that's developing and looking just like us before birth as not one of us. 1973 Roe vs. Wade and Doe vs. Borton legalized abortion for all months of pregnancy for "any" reason. Today, "any" reason is becoming less acceptable in society. Laws are being heavily established or already have been established in states to where "any" reason wouldn't exactly work. In the past year, six states passed laws to where you can't get an abortion passed 20 weeks based on a theory that a fetus can feel pain after that point. Nineteen states don't allow 86-99% of their counties to have access to abortion providers(CBS News). Our society has definitely shaped itself to support the "life" of a person, unborn or born. I leave it to you decide when does a life "begin."

Here's some information collected from a recent poll done by the National Right to Life Organization

- Women have cited "social reasons," not mother's health or rape/incest, as thir motivation in approximately 93% of all abortions

- A March 2013 poll by The Polling Company found that 53% of Americans oppose legal abortion except in only 3 or fewer circumstances: when the pregnancy results from rape or incest or whn it threatens the life of the mother

Bioethical Themes in Theatre

Theatre and drama can be used not only to entertain the public – but theatre can be used to discuss and educate the public about historical events, current events, social issues, and ethical problems. For centuries, theatre has been used as a tool to express ideas about illness, medical technology, and ethics. Since I am a theatre major, I thought it would be interesting to look into some historical and contemporary dramatic literature and theatrical productions that have bioethical themes, and to discuss them briefly. 

“Learn from me, if not by my precepts, at least by my example, how dangerous is the acquirement of knowledge and how much happier that man is who believes his native town to be the world, than he who aspires to become greater than his nature will allow.”

-          Spoken by Victor Frankenstein, Frankenstein, Mary Shelley

Perhaps one of the best known bioethical productions is Frankenstein, a story about a young scientist who creates a sentient being by replicating parts of the human body. Although Frankenstein was/is originally a book by Mary Shelley, published in 1818, it has been adapted to fit the stage multiple times throughout history. Although some of the productions are humorous, or even written into musical format, the original ethical issues in the book remain prominent.  Victor Frankenstein essentially “plays god” and creates a grotesque monster, which is uncontrollable, although not inherently evil. The monster is capable of feeling, and is aware that he is hideous and different, but he is not able to properly express these emotions. The monster becomes violent, even resorting to murder. Who is responsible for the monster’s actions, Dr. Frankenstein, or the monster himself? Should humans be allowed to “play god” and create human life from scratch, and even if they are able to, who will be able to control how the public will react to such a creation? These topics are brought up in both the book and in the theatrical productions.

Should Doctors Give Patients What They Want? (Part 1)

          The question posed is a current concern in the medical field.  Medicare devised a system where hospitals are reimbursed by a score of quality.  30% of this score is determined by patient satisfaction.  Recently, New York City’s hospitals took this idea further and based their physicians’ salaries on patient satisfaction.  This new format was intended to prevent doctors from being rude, not listening, spending little time with the patient, and not explaining things in detail to the patient, but it created a conflict of interest for the doctors giving care.  Instead of providing the patients with care that will help them, the doctor ends up fulfilling patient requests to get paid.

A study surveying 52,000 patients found that “satisfied” patients paid 9% more and had a higher mortality rate, about 26%.  This study shows that a higher level of patient satisfaction does not equal better care for the patient.  The higher costs coincide with the doctor acquiescing to the demands of the patient.  The patients demand a costly procedure or drug because they believe it will magically cure them of whatever afflicts them.  The doctor, wanting to maintain a good rapport with the patient so he or she gets paid, orders the procedure or drug ending in more dollars spent on healthcare.  It may result in the doctor appearing less rude, but this type of reimbursement program is a marketing ploy and in no way provides better care for the patient.

Sometimes there are nice ways to tell patients that they need to lose weight or stop smoking, but other times, situations aren't that easy.  For many people, it is hard to differentiate between the disappointment of a message and the messenger delivering it.  As a volunteer in Vanderbilt University Hospital, I see this type of shoot the messenger mentality a majority of the time.  Many times a patient will ask me to get them food or water.  Before I give the patients anything to eat or drink, I am required to consult the nurse or physician over them.  Nine times out of ten, the nurse or physician will tell me that the patient cannot have anything because they are about to have a procedure done.  As the messenger, I return to the patient and give them the bad news, and instantly, I am shot ... with angry looks.  The patients then treat me differently afterwards most likely thinking I am mean for refusing their request.  Withholding food and water from the patients might not be very pleasing to them, but in the end, it prevents them from having to remain in the emergency room longer.  Materials in the stomach make reading x-rays and other types of scans difficult and also makes surgical procedures difficult to complete.  So in order for the results to turn out well the patients would have to wait for their bodies to process the food and water.  Even after explanation, some patients do not fully understand and still have disgruntled looks on their faces.

... to be continued.

http://www.forbes.com/sites/stevensalzberg/2014/05/26/dr-house-was-right-give-patients-what-they-need-not-what-they-want/

http://www.kevinmd.com/blog/2011/03/empathy-giving-patients.html

http://www.newyorker.com/tech/elements/when-doctors-tell-patients-what-they-dont-want-to-hear

Designer Babies: Blog Post One

My blog posts will consider the possibility of designer babies. This first blog post is intended to accomplish 2 things:

1)      Discuss the current possibilities with designer babies. What does our current technology allow us to do with regards to genetic modification of our offspring? What is realistically in the near future?

2)      Discuss the potential benefits of designer babies that are most rewarding (and there are many).

The second blog post is intended to:

1)      Discuss the potential downfalls of designer babies that may be the most destructive (and there are many).

The third blog post is intended to:

1)      Discuss my opinion on the subject, which hopefully will materialize out of thin air by the time I get to the third post, because right now I am very conflicted (as I am in most philosophical discussions).

The current technology regarding designer babies is not quite to the point where many people begin to disagree with the practice itself. Currently, researchers may already utilize genetic analysis on gametes to determine the possibility of genetic illness before implanting the gamete. This process is essentially pre-genetic “screening,” and can eliminate some potentially genetic defects to appear from the offspring (i.e. Down Syndrome). In fact, doctors are currently able to screen for more than 400 common genetic diseases today, and that number continues to grow. However, technology does not currently allow for direct genetic modifications via the insertion or deletion of gene segments, or direct manipulations of the genome to choose for common physical traits like hair/eye color, height, etc. Even so, parents do have the option to create multiple gametes and choose which gamete to fertilize based on the genetic analysis.

The potential benefits of such technology should be obvious. Perhaps the most immediate benefit of genetic screening and designer babies is the fact that parents can eliminate the possibility that their child is born with a debilitating genetic disease, one that could result in debilitating phenotypic consequences and long-term suffering (for both parties, parent and offspring). The elimination of such diseases on the population presents a strong argument for pro-designer baby arguers, and may carry even greater effects down the line when more advanced screening becomes available (i.e. genes which increase the chance of cancer, heart disease, etc.). To a supporter of designer baby genetic screening, it would almost seem unethical to deny our offspring the best chance at life via a genetic pre-screening.

Another potential benefit of such technology is the creation of a phenotypically “pure” and superior race of human beings. With enough generations employing this technology, the future of the human race would be theoretically in the hands of a perfect species with the current genetic pool available, and may even result in the creation of a new, superior species altogether, one that could answer many of the current mysteries of life due to their elite intelligence, focus, and intuition.  

Instagram for Doctors

Has anyone ever heard of Figure 1? It's an app that allows healthcare professionals to share pictures of interesting and/or perplexing medical conditions as long as any identifying characteristics are removed. It is freely available to the public. Users can comment to suggest diagnoses or tests.

I downloaded the app out of curiosity and looked through it for about half an hour. It is certainly not for anyone with a weak stomach. The vast majority of comments were made by medical professionals to suggest possible diagnoses or courses of action. However, one comment said something like, "What an awful condition, the same thing happened to my friend's kid, poor baby, etc etc," which struck me as extremely inappropriate.

Pros: Could be a valuable teaching resource; "Paging" feature allows doctors to request input from specialists and experts.

Cons: Seems to be pushing the limits of HIPAA - could be interpreted as obeying the letter but not the spirit of the law. "I'm not sure why this is open to the public." - Nicolas Terry (Indiana law professor).

Read more:
http://www.buzzfeed.com/virginiahughes/is-this-doctors-app-a-digital-classroom-or-medical-porn
http://www.cnn.com/2015/02/10/tech/figure1-photos-medical-app/
http://betakit.com/figure-1-brings-paging-support-to-its-instagram-for-doctors-app/
http://techcrunch.com/2014/04/25/instagram-for-doctors-app-figure-1-updates-with-new-features/