The Existence of Pragmatism in Futility of Care

    In a meeting today I was reminded of how pragmatism and futility of care collide.  A colleague pulled me aside and asked for my opinion on a case.  I agreed to listen and as I listened I began to understand how experiences, the truth, and hope collide with the concept of futility of care.

    The case, an older patient, diagnosed with an aggressive form of cancer, refuses to follow medical recommendations.  The patient is at a point where radiation and chemotherapy will not help.  There is no cure.  After much discussion, the patient agreed to palliative care and receiving intravenous feeding.  The patient, despite the prognosis, believes this treatment will help strengthen them so they may receive chemotherapy.  The family and the medical team understand the intravenous feeding will not bring about a recovery.  There is no reprieve, no beating this form of cancer but the patient believes otherwise.  My colleague’s query was: Is there an ethical obligation to intervene and stop any care which is futile?  My answer was: there is an ethical obligation to understand the patient’s truth and respect their decision for treatment.  To do this, we must examine the concepts of pragmatism and futility of care.

    What we perceive, form judgments on, and then mold into our belief system comes from external experiences.  William James, a Pragmatist, describes how, in the normal case, we have an established body of views and opinions, and issues about what to believe arise when a new experience puts them under strain. We will accept a new opinion when “[I]t preserves the older stock of truths with a minimum of modification, stretching them just enough to make them admit the novelty, but conceiving that in ways as familiar as the case leaves possible.”1  It is the patient’s experience and therefore their truth that treatment of any kind will strengthen the body allowing for further treatments which address the cause of the patient illness.  In this case, the patient believes intravenous feedings will help them in their goal to fight cancer.  They don’t have any reason not to think this because previous experiences with medical care have made them better.  For the patient, medical care represents hope, and this is a form of truth which makes the patient comfortable.  While the family and the medical team understand intravenous feeding is futile because the cancer is aggressive and will not let the patient heal enough to fight, the patient, despite the prognosis, remains faithful to an older form of truth.  Forming truth out of experience creates a problem because, while, the patient has experienced better health through medical intervention facts gathered by the family and medical team has shown all care is futile.

    Richard Rorty, a philosopher, may have the answer to the dilemma the family, patient and medical team are facing.  Rorty said: “What pragmatists teach us about the truth is that there is nothing very systematic or constructive to say about truth at all. In particular, this concept does not capture any systematic or metaphysical relation between our beliefs and utterances, on the one hand, and reality on the other….sometimes we might find it useful to express our fallibility by saying that some of our beliefs may not be true”1  We are fallible.

    We want our beliefs to be true because the truth we believe in gives us hope.  In this case, the patient’s belief in intravenous feeding gives hope despite the growing realization there is none.  Is the care futile?  No.  The intravenous feedings provide comfort to the patient who is coming to terms with their prognosis of death.  Futility of care exists if there is harm done to the patient.  There is no harm, and one could argue there is a benefit to the intravenous feedings because they’re providing hope to the patient, however, false it may be in the family and medical team’s opinion.  There are times when if there is no harm to the patient and care is benefitting the patient, in this case allowing the patient to hold onto hope, care must continue.  To remove treatment is to remove hope, and once removed, care becomes futile.

References: 

1.  Pragmatism (Stanford Encyclopedia of Philosophy), http://plato.stanford.edu/entries/pragmatism/ (accessed October 03, 2016).

Should Religion Play a Greater Role in Bioethics?

A perennial theme in bioethics has been whether, and to what extent, religion ought to play a role.  Recently, Timothy Murphy has gone so far as to propose an “irreligious bioethics,” built upon a “disregard for religion or even a degree of hostility” (Murphy, 2012, 3).  A common critique against positions such as Murphy’s is that they attempt to achieve an irreligious, ametphysical, view from nowhere, which is now widely regarded to be a fiction.  I call this the argument from inevitable presuppositions (AIP).  Consider the following passages:

“All moral theories come with traditions just as convoluted and troubling as those one might find in a religion […] We encourage Murphy to examine the possibility that the irreligion he espouses is just as much a cultural artifact as shamanism” (Crane & Putney, 2012, 29)

“[T]he ideal of secular medicine as a realm of reason and therefore as untroubled by deep metaphysical and moral disagreements is a fantasy” (Biggar, 2015, 1)

“No philosopher, politician or humanist marches into the contest armed only with the sharp sword of reason, stripped naked of the costume of any moral culture” (Cahill & Callahan, 1990, 14)

The AIP consists in making the charge that the liberal, scientific, naturalistic viewpoint taken up by Murphy and others is just as full of presuppositions and metaphysical troubles as any other tradition.  The attempt to obtain a more rational perspective by which to judge religion as irrational is impossible.  Charles Camosy makes the point this way:

Consider that secular utilitarian traditions are defined by their authoritative, faith-based and transcendent answers to the following kinds of questions. What is that about which we should be ultimately concerned? Maximizing good consequences. How are we to determine what counts as good consequences? Some will say “pleasure over pain”; others will talk about preferences satisfied over preferences thwarted”; still others “happiness over unhappiness.” How do we aggregate consequences? “One counts as one and none more than one.” But who counts as one? Do future or potential persons count? […] Answers to these (and many other) big questions are derived from the authoritative, transcendental, faith-based, first principles of traditions like hedonistic and preference utilitarianism (Camosy, 2012, 14).

    Timothy Murphy has responded to these “tu quoque” replies by arguing that the difference between religious and nonreligious standards is that the presuppositions of religious standards are “accessible only by logically prior commitments to certain theological claims” (Murphy, 2012, 7).  Murphy contrasts the Vatican’s view excluding gay marriage on the grounds that marriage between a man and woman is “something wisely and providently instituted by God the Creator with a view to carrying out his loving plan in human beings” (Faith, 2009) to an argument that claims “same-sex marriage is a threat to the psychological well-being of children.”  Murphy’s claim is that whether same-sex marriage is a threat to the psychological well-being of children is a claim that can be “analyzed and evaluated without any prior assumptions that are logically inaccessible by all” (Murphy, 2012, 7).  

This is precisely the claim murphy’s detractors will not allow him to get away with, as “well-being” is always tied up with “prior assumptions” that may very well be logically inaccessible to others.  Because the concept of well-being must be grounded in thick commitments of some kind - utilitarian, deontological, virtue ethic, naturalistic, etc -what seems like a relatively innocuous concept like “well-being” is always already deeply entangled in metaphysical, “logically prior” assumptions.  Because of this, I have decided to take a different approach than arguing that some metaphysical claims are more metaphysical than others.  Rather, I aim to show that the particular metaphysical claims of standard theism are incompatible with the AIP.  Standard theism is the conception of God as a personal, omniscient, omnibenevolent, omnipotent, creator, transcendent being (Peterson, 2013, 10).  It seems one could posit the AIP or standard theism, but not both.    

    The AIP can be read as leading to epistemic relativism. The relativistic reading sees no way to adjudicate between various sets of presuppositions.  All reasoning proceeds from fundamental moral-metaphysical claims, what one comes to believe as rational will be relative to the presuppositions from which one begins. Reason cannot get behind one’s presuppositions to determine which set of presuppositions is the correct or rationally superior set. Chris Durante claims that the best one can hope for in terms of being “rational” on this view is a mindfulness of the presuppositions and limitations of one’s view” (Durante, 2012, 20).  

    Aside from the traditional philosophical problems that haunt relativism, I think there is a special kind of incompatibility between relativism and belief in standard theism.  If God exists and issues moral commandments that he wants us to know, then he would not have created a world where we are forced to accept a set of presuppositions without any means to rationally adjudicate among them.  Why an omnibenevolent, omnipotent God would have created a world where we have no basis for choosing one set of assumptions over another remains a mystery.  How could we be blamed for selecting the “wrong” starting assumptions and for never coming to know the correct moral commandments which he has issued?  The epistemic reality described by a relativistic reading of the AIP is incompatible with the notion of a God that created the world with specific moral principles by which he wants us to live.  If God has important truths he wants us to know, then we should expect a better way of knowing than what epistemic relativism provides.  

     In sum, there may be good reasons for religious belief to have greater influence in bioethics, but the AIP is a problematic strategy for reaching that conclusion—as it describes humanity in an epistemic situation incompatible with the God of standard theism.  

References:

Biggar, N. (2015). Why religion deserves a place in secular medicine. Journal Of Medical Ethics, 41(3), 229-233. doi:10.1136/medethics-2013-101776

Cahill, L. S., & Callahan, D. (1990). Can theology have a role in `public' bioethical discourse? Hastings Center Report, 20(4), 10.

Camosy, C. C. (2012). The Role of Normative Traditions in Bioethics. American Journal of Bioethics, 12(12), 13-15. doi:10.1080/15265161.2012.725349

Crane, J. K., & Putney, S. B. (2012). Exorcising Doubts About Religious Bioethics. American Journal of Bioethics, 12(12), 28-30. doi:10.1080/15265161.2012.719274

Durante, C. (2012). Extending the Hermeneutics of Suspicion Beyond Irreligiosity. American Journal of Bioethics, 12(12), 19-20. doi:10.1080/15265161.2012.719276

Faith, C. f. t. D. o. t. (2009, September 3, 2016). Instruction dignitas personae on certain bioethical questions.   Retrieved from http://www.vatican.va/roman_curia/congregations/cfaith/documents/rc_con_cfaith_doc_20081208_dignitas-personae_en.html

Murphy, T. F. (2012). In Defense of Irreligious Bioethics. American Journal of Bioethics, 12(12), 3-10. doi:10.1080/15265161.2012.719262

Peterson, M. L. (2013). Reason and religious belief : an introduction to the philosophy of religion: New York : Oxford University Press, [2013] 5th ed.

Egg Preservation and the Changing Medical Landscape

Sperm preservation, primarily in the form of sperm donation, has moved into the American mainstream in recent years. Yet its counterpart, egg preservation, has generally remained off the radar, despite the fact that the first pregnancy as a result of cryopreserved eggs dates back to 1986 (Chen, 1986). The procedure is primarily used as a starting point for future in vitro fertilization, and has played a role in allowing women to gain more control over their reproductive futures. However, cryopreservation of eggs is expensive, impeding widespread development and use. Even today, over 30 years after the inception, procedures cost upwards of 15,000 (Hamblin, 2016). Fortunately, a new fertility clinic, through lower costs and improved safety, might be reshaping the field.

The clinic, called Extend Fertility, was founded by a group of entrepreneurs and physicians with efficiency in mind. Utilizing a process dubbed “super-specialization,” the scientists can focus solely on egg cryopreservation, and avoid much of the overhead cost that would be associated with a more general fertility clinic (Hamblin, 2016). This economic efficiency has led to a bold business model: if a woman is young and in good health, she pays a flat sum (a little under $5000) and the clinic promises at least a dozen eggs (Hamblin, 2016). That is, even if the procedure does not work the first time, it will be repeated until it is successful for no additional charge.

However, claims of lower costs have been somewhat unfounded.  In reality, the egg retrieval process is only a piece of the cost. The hormone therapy and longer term storage, which are required for the success of the procedure and for the practical use of the eggs in the future, drive up the actual price of the process to somewhere near the current market price (Hamblin, 2016). Regardless, the group has stated that its method will eventually decrease costs and improve outcomes.

The establishment of such a clinic, beyond its specific purpose and outcomes data, presents a set of interesting and important questions for the medical community. Primarily, when steep prices are involved, the medical field must ask itself whether or not economic inaccessibility may lead to differential health outcomes. Specifically, it has been well documented that younger women, and younger eggs, have better IVF success rates (Wang, 2011). If this model is successful in lowering prices, it could help equalize IVF opportunity. Additionally, this hyper-specialized form of health care, where providers become incredibly well-versed in a single procedure or small subset of procedures, has been seen in other branches of the healthcare field, especially with specific orthopedic surgeries, and suggests a direction the field field as a whole might be moving in (Hamblin, 2016). There are, of course, field specific implications, including a need for additional, rigorous research about the effects of egg cryopreservation, donor age, and IVF success, but only time will tell what this small clinic means for the field as a whole.

Resources:

Chen, C. (1986, April 19). Pregnancy After Human Oocyte Cryopreservation. The Lancet, 327(8486), 884-886. doi:10.1016/s0140-6736(86)90989-x

Hamblin, J. (2016, September 15). One Clinic Is Promising to Cut the Cost of Egg Freezing in Half. Retrieved September 16, 2016, from http://www.theatlantic.com/health/archive/2016/09/how-one-clinic-is-cutting-the-cost-of-egg-freezing-in-half/500144/
Wang, Y. A., Farquhar, C., & Sullivan, E. A. (2011). Donor age is a major determinant of success of oocyte donation/recipient programme.Human Reproduction, 27(1), 118-125. doi:10.1093/humrep/der359

The Catch-22 of the Inexperienced Therapist

The reality of training to be a mental health professional is that the only way to truly develop competence is to actually see patients. Though I was tempted to try to hide in case studies and role plays forever, focusing only on what I would do so as to never risk messing up, I discovered quickly that this was not an option. As an MSW (Master of Social Work) student in New York City, my peers and I were thrown into the city’s highest need, lowest resource communities a mere two weeks into our educational experience. Armed with little more than naive optimism, I set out to learn how to be a clinical social worker.

How was it determined which people would be the victims of my well-intentioned but clumsy first efforts at conducting therapy sessions? The anxious aspect of my personality hoped it would only be those with relatively straightforward problems with clear solutions so that the potential havoc I could wreak would be minimized. Alas, the realities of the city in which I live and the system within which I work would allow no such thing to happen.

In my experience, NYC is a city where the extremes of wealth and poverty coexist, but do not comingle. The way I see it, there are two siloed mental health systems here: one that serves the rich and one that serves everybody else. For those with money, the options are limitless. Therapists and psychiatrists who do not take insurance abound in this city, some charging upward of $500 for a 15 to 45-minute single session. Excellent at what they do I’m sure, but entirely inaccessible for most. On the other end of the spectrum lies the public mental health system, a constellation of public hospitals and community-based clinics scattered throughout the city. It is in these places where those who cannot pay as much are seen. This includes individuals whose mental health difficulties are often caused or compounded by a multitude of psychosocial stressors.  

Though these two systems aim to provide similar types of services, the scales are heavily weighted against one. The public mental health system is understaffed and overburdened, and as such it is in its settings that social work interns like myself often find themselves. In my case, it was an outpatient mental health clinic in Manhattan’s East Village that served as my own personal psychotherapy training ground.

My eight months at this clinic were a sort of mental and emotional bootcamp in which I was asked to do things I had never done before on a daily basis. When I arrived I had never conducted a therapy session in my life. About a month later I had a full caseload of individuals, couples, and families to manage, and was considered the primary therapist for every one of them. These were not the uncomplicated cases of my dreams. While I thought my superiors would hand-select relatively straightforward cases, the reality was far from this. . Rather, I saw a broad swath of mental health diagnoses, including depression, anxiety, bipolar, and schizoaffective disorders, that were inextricably interwoven with homelessness, unemployment, financial instability, immigration-related concerns, legal issues, and trauma.

Therapy is not an experience for the faint of heart. It demands brutal honesty and total vulnerability. Therapists pry into the most intimate aspects of their patients’ lives, not to be nosey, but rather because it is the only way for us to understand how we can help. The single most fitting word I can think of to describe my patients is brave. It takes a tremendous amount of courage for an individual to open up in therapy, and I am consistently humbled by the willingness with which my patients engage this task. But therapy is a transaction - in exchange for their honesty and openness, patients engaging in therapy have the right to expect that they will be greeted with expertise and knowledge of how to help them work through their problems. But what happens when this expertise is absent?

Graduate school taught me a lot of things, but one thing it did not teach me was how to do my job. I caught on quickly that my classes aimed to broaden my knowledge base and teach me a way of conceptualizing the problems I encountered in a manner consistent with the dictates of my discipline. They did not, however, teach me much in the way of how to concretely intervene in my client’s lives in order to facilitate positive growth and change. This is not meant to be a criticism of my graduate education. I fully recognize that only so much can be imparted in two years, and that the priority is to build a strong foundation that can be furthered through post-graduate employment experience.

But the fact remains that the crux of my job as a therapist is to help people produce the changes they wish to see in their lives. And when I began my internship at that outpatient mental health clinic, I had very little idea of how to actually go about doing that. Because of this I often couldn’t help but think of my patients as casualties of my own inexperience, and be bothered by the feeling that they deserved better than what I could offer. Further, because of the nature of the mental health system, the people with whom I worked were often high-need and low-functioning. Namely, they were individuals and families who could have benefited greatly from the care of an experienced, specialized mental health professional, yet who found that kind of professional unreachable due to financial and practical constraints. In short, I, or a similarly inexperienced therapist in training, was their only option.

I once read an article about starting therapy and was struck by the suggestions that it contained. Though I agreed with every one of them, I couldn’t help but notice what a privileged perspective it reflected. It essentially encouraged readers to shop around for a therapist until the person found  a good fit for the individual’s personality and goals. This is absolutely the ideal situation, but one that is unattainable for many. The individuals and families who visited the clinic in which I worked were not given a choice as to which therapist they would see. They were assigned a therapist based on whoever had availability in their schedule. If it happened that the patient did not like that therapist or their style, there was very little, and oftentimes no, flexibility for a change to be made. And so it goes that in so many cases the individuals with the greatest needs end up matched to the therapists who are least equipped to meet them.

I worked my way through that internship hoping that what I lacked in experience I made up for in kindness and presence with my patients. I rationalized that any interaction with a caring person who has the desire to help is therapeutic, and that the only way I could be more helpful to future patients was to invest in my present patients, learning from them and from my mistakes. I still believe these things to be true, but continue to be troubled by the ethics of providing “therapy” when the only thing that qualifies you to do so is your participation in a graduate program. We have to learn somehow, but is it really right to keep patients with entrenched difficulties that impede their ability to live meaningful lives in therapy that may be unproductive, ineffective, or aimless simply for our learning purposes?

The pattern I often see is therapists working in community-based, public mental health care at the beginning of their careers when energy and zeal are high and the need to accumulate clinical hours for licensure purposes is paramount. But working within this disorganized and fragmented system that so often fails to meet the needs of its consumers is frustrating, discouraging, and ultimately exhausting. To avoid total burn out, many practitioners transition into private practice once they have acquired the necessary expertise to do so. Yet the clientele that fills the caseload of a private practitioner tends to look quite different from that which predominates at a public hospital or community health clinic, often higher functioning, better educated, and with greater access to resources. And that is how the cycle perpetuates, how the people with the highest needs find themselves working with the mental health professionals who have the least experience to draw upon in order to meet them.

Though now a full-fledged, licensed mental health professional, I still consider myself an inexperienced therapist, and I continue to come up against this dilemma in my practice. I frequently encounter cases that are unlike anything I have worked with before, and feel a bit lost as I attempt to put together a treatment plan that I can only hope will work. I dream of a world in which the public mental health system is more functional such that a greater number of skillful, accomplished professionals are incentivized to continue to work within it. Until that time, I will work to make my peace with the fact that sometimes, for any number of reasons, I am all that people have. And though it may be imperfect, I am optimistic that the something we burgeoning therapists can offer in terms of mental health support is a whole lot better than nothing.

Addiction, Drug Courts, and Informed Consent

    It’s early in the morning, and I receive the alert to meet a potential client in court.  As I stand outside of the courtroom, I watch the chaos of confused people and attorneys quickly consulting with each other.  Then I am called over by the attorney for the Department of Family and Children, DCF, to meet their new client.  The client is scared, confused, and unsure of what is going on.  All she knows is her children are in the custody of DCF, and she now must go through the prescribed steps to have them back with her.  I introduce myself, explain my program, and ask if she wants to sign on to Dependency Drug Court.  She nods and is hustled into the courtroom to hear what the judge has to say.  When asked if she has spoken to a representative of the Dependency Drug Court program she says yes and consents to become a part of the program.  After this a time to meet with me is arranged, attorneys swarm nearby while, in some cases, concerned family members appear like ghostly apparitions to take my new client home.  Her life has changed immeasurably because of one positive test or one anonymous phone call, and there is no going back to what it once was.

    During the first appointment with the client, I explain the program and how successful completion of each section will grant her more rights and access to her children.  There are no forms for her to sign, nothing for her to read and no further explanation on my side of what Dependency Drug Court fully entails and how it will impact her life for at least the next 18 months.  Her consent in court placed her in my office and the program.  We briefly discuss her concerns with addiction, both DCF- and life-based, and work on setting up a treatment plan.  It all seems straightforward, but I often wonder how a person can consent to a program when in all likelihood one does not have the full capacity of their facilities at that time?  

    People thrust into the court system are often unprepared and, as is the case for many of my clients, often undereducated.  The information, the timing of the consults, and the lack of pamphlets create an ethical dilemma: was informed consent to join the program given when asked by the judge?  I don’t believe it was.  The confusion, barrage of questions and information, and the shock of being in a courtroom are overwhelming for anyone, but for someone charged with child endangerment and neglect due to drug use it can be sensory overload.  There is no time to stop, think, and consider all the options, and there is no pamphlet to read later.  Ethically, it is impossible to contend the new client was aware of the possible consequences of the program or had full knowledge of the risks and benefits.  To give permission means to understand, and in the case of those ushered into a Dependency Drug Court program, full knowledge is often lacking due to the circumstances surrounding their enrollment.

    Instead of consent while facing a judge, the potential client should meet with the Dependency Drug Court Clinician, have the program re-explained, a brochure given and a second appointment set up to go over any questions they may have.  It is only at this point a consent form of their rights and responsibilities in the program should be signed, and the new client is then a part of the program.  Informed consent is imperative for both the client and the program.  Giving the potential client time to gather their thoughts, talk to people, and read the information before consenting to be in a rigorous program helps to ensure their success within the program and in establishing their sobriety.

Women Facing a Zika Testing “Catch-22”

The Centers for Disease Control and Prevention (CDC) has placed strict guidelines on who can be tested for Zika virus. Labs all over the country are backed up with the increased demand for Zika testing because the test is a lengthy three-step procedure (Rabin). While these tests may not be very invasive, and may not require multiple samples, the process is dependent on many different factors (travel history, date of onset, immunization record) (Memorandum). First, a test is done for active virus in the blood or urine; however, this is only effective within the first two weeks after contraction (Rabin). Next, a test for antibodies is done. Since many people don’t show symptoms, these two tests are effectively useless because negatives results do not conclusively show that the patient was never exposed to the virus (Rabin). Lastly, a Plaque Reduction Neutralization Test (PRNT) is conducted, which is a test used for many different types of mosquito born illnesses, including Chikungunya and Dengue (Alvarez, Memorandum, Rabin). At the moment though, this last test is only being conducted by a small number of labs, including the CDC itself (Rabin).

The problem many women are now facing is the lack of preemptive testing. Women will not be tested unless they are pregnant, but women don’t want to get pregnant until they are tested. With over 70 cases reported in Florida, it seems reasonable that women trying to conceive would be apprehensive about fetal health because they could have been exposed to the virus, yet remain unaware of their status (Alvarez). Florida in particular  has been backlogged with tests (Alvarez). In response, the CDC has sent down technicians to help move the testing along, as testing is time sensitive (Alvarez). However, the tests take 4-5 weeks to analyze, so speed may be difficult to come by (Rabin). As a result of their efforts, over 2,500 pregnant women have received free testing thanks to the CDC, but they are running out of funds quickly (Alvarez).

References:

Alvarez, Lizette. "Florida Gets Help to Deal With Backlog of Zika Tests." The New York Times. The New York Times, 14 Sept. 2016. Web.

"Memorandum." Linguistics 9.66 (2016): n. pag. Centers for Disease Control and Prevention. Centers for Disease Control and Prevention, 7 Feb. 2016. Web.

Rabin, Roni Caryn. "Want a Zika Test? It’s Not Easy." The New York Times. The New York Times, 19 Sept. 2016. Web.

The Not-so-Sweet Truth About our Health

The Journal of the American Medical Association (JAMA)  published documents on Monday, September 12th, 2016, revealing how the sugar industry misguided the American public’s understanding of the role of sugar in heart disease.

In 1965, the Sugar Research Foundation (SRF) funded research to study the dietary causes of Coronary Heart Disease (CHD). This study identified fat and cholesterol as the dietary causes of CHD, successfully casting doubt about the harms of sucrose on heart health.1 The SRF-funded study then targeted previous research that showed possible links between sugar consumption and heart disease. They attempted to discredit the previous research for their use of epidemiological and animal studies by labeling them as “limiting” and saying that this kind of research was not relevant to humans. In this same review, however, the same researchers referenced literature that linked saturated fat to heart problems, without critiquing the study for using the same methods.3 At the time of this publication, there was no disclosure on who funded the research because it was not a requirement for the SRF-funded research to do so until the 1980s.2 I find it to be questionable that a study funded by the sugar industry itself was able to discredit the evidence that sugar did indeed have an effect on overall health. It is only now, in more recent years, that public health sectors have been able to bring attention to the fact that low fat diets with large amounts of sugar are not really aiding, but instead impeding, our health.

           However, this is not the only instance of large industries and companies paying off researchers to guide evidence in a favorable direction. Last year, The New York Times published an article unveiling how Coca-Cola gave millions of dollars to downplay the link between sugary drinks and obesity.2 In June, the Associated Press reported that candy makers had been funding studies stating that children who eat candy have a tendency to weigh less than children who do not eat candy. One of the scientists that was paid in the original SRF-funded study went on to become the head of nutrition for the United States Department of Agriculture. He then went on to assist in the drafting of the forerunner of the federal government’s dietary guidelines.2 While I do not mean to discredit any valuable work that he may have contributed to the field of health, I would like to draw attention to the fact that it’s not always clear that published research is intended to improve the health of the public; sometimes, the motive may be more politically and economically driven. Studies that are given media attention are not always those with our health in mind as the primary target.

           Indeed, my intention in writing this piece is to share that we cannot always trust that what we are being told is true evidence. Politics and money sometimes also play a role in an area that should be strictly limited to science. We should not live in paranoia that we are being lied to about what should be common knowledge on the topic of our shared health, but sometimes research has not be conducted in the most ethical of ways. As a result of some of the research studies discussed above, as well as other societal factors, we have seen an immense increase in the rates of obesity, diabetes, and heart disease. About 80% of the 600,000 food products sold in the United States contain added sugars. The average woman should consume a max of about 25 grams of sugar a day while the average man should consume a max of 38 grams a day. But the majority of us are well over this limit. As a nation, we cannot afford to take this kind of risk when it comes to the  health of the public. Money, on many different levels, should not be the determinant of our collective well-being.

References:

1. MBA, Cristin E. Kearns DDS. "Sugar Industry and Coronary Heart Disease Research." :  A Historical Analysis of Internal Industry Documents. 2016. Accessed September 16, 2016. http://archinte.jamanetwork.com/article.aspx?articleid=2548255.

2. 2. O'connor, Anahad. "How the Sugar Industry Shifted Blame to Fat." The New York Times. 2016. Accessed September 16, 2016. http://www.nytimes.com/2016/09/13/well/eat/how-the-sugar-industry-shifted-blame-to-fat.html?_r=0.

3. 3. Sifferlin, Alexandra. "How the Sugar Industry Shaped Heart Disease Research." Time. Accessed September 16, 2016. http://time.com/4485710/sugar-industry-heart-disease-research/?xid=homepage.

Beyond Euthanasia

Jerika Bolen, a 14 year old from Wisconsin who suffers from type 2 spinal muscular atrophy, made headlines in July when she made the decision to end her life this fall by pulling the plug on her life-sustaining ventilator.1 The disease causes her constant pain and erodes all of her muscular ability. It is also fatal by mid to late adolescence, and she had been told that her pain would only increase in the years to come before ending in an inevitable death.1 Rather than endure this suffering, Jerika believes that a life after death would grant her freedom from her current pain. “I have been realizing I’m going to get to walk and not have this pain anymore and not have to, like, live this really crappy life” she said.1

In addition to ethical implications stemming from Jerika’s age, her decision also opens up a larger discussion on end-of-life decisions outside of euthanasia. Euthanasia is often a heated ethical issue, and Americans are deeply divided over it. Polls show that about half, 53%, of Americans believe that it is morally acceptable,2 and it is currently legal in only five states. However, conversations about end-of-life decisions rarely widen outside of euthanasia (physician-assisted suicide), to include ones like Jerika’s, which is a refusal of medical services that results in death.

Despite euthanasia’s high-profile nature, terminally ill patients have long chosen to end their lives by means other than lethal drugs. Some make decisions similar to Jerika’s, removing themselves from life-sustaining devices, while others choose palliative sedation, in which patients are medically sedated until death. Sometimes patients request that food and water be withheld during sedation, causing death by dehydration.  

Perhaps discussion mainly focuses on euthanasia because it is more direct than other life-ending measures: the action to take lethal drugs is clear, and death comes quickly. Those who choose palliative sedation slip away in a matter of days, and there are no legal complications: no one is required to accept food or water, and death is inevitable if they choose to refuse it. The core issue, however, remains the same: in what case, if any, do terminally ill patients have the right to choose death?

Proponents of euthanasia claim that it is a more humane alternative to sedation. Though sedative drugs can be used to make a patient more comfortable, no one can be sure of how much a patient is able to feel while under their influence. An underlying principle is also at stake: proponents believe that a painless and intentional death should be available to those who feel that this world has caused them unbearable suffering.

On the other hand, proponents of palliative sedation  view it as a more natural means of death. Sedation is a path often chosen when death is near, and sedation is simply a means of reducing discomfort and ushering in its arrival. It also does not carry the same risk of abuse, as is only available in truly terminal cases. Proponents argue that sedation upholds the principle of preserving life until it is no longer possible. Advocates of both means however, believe in a merciful answer to suffering at the end of life.  

Jerika’s choice to end her life was one made under heartbreaking conditions, and one that will not easily be forgotten. It was not, however, without its share of public controversy and legal complications that must have added to her already-heavy burden. For her sake, and for others like her, it is the responsibility of society to continue dialogue that leads to ethical and legal decisions about what constitutes a compassionate end to life. This means opening up conversations to take a wide look at options beyond the often-discussed euthanasia to include palliative sedation, refusal of medical services, pain management, and other methods of easing suffering at the end of life. In doing this, we take a step towards securing a more just end for ourselves and those around us.

References:

1 May, Ashley. “Q&A: What you should know about right to die.” USA Today, 8 Sep. 2015, http://www.usatoday.com/story/news/nation-now/2016/09/07/q-what-you-should-know-right-die/89959838/.

2 Swift, Art. “Euthanasia Still Acceptable to Solid Majority in U.S.” Gallup Polls, 24 June, 2016, http://www.gallup.com/poll/193082/euthanasia-acceptable-solid-majority.aspx?g_source=CATEGORY_HEALTHCARE&g_medium=topic&g_campaign=tiles.

Hillary’s Health: Is it Time for More Transparency in the Health of Our Presidential Candidates?

    The health of presidential candidates has been the topic of conversation on both sides of the political spectrum, as of late. Hillary Clinton (D) has been under intense scrutiny ever since her syncopal episode at a 9/11 memorial ceremony. Ms. Clinton was rushed into her private vehicle and taken to her daughter’s nearby apartment. Later, a campaign spokesperson revealed that Ms. Clinton had been diagnosed with pneumonia, two days prior. This incident, combined with recent coughing fits, has raised the eyes of the public as to the overall health of the Democratic presidential candidate.

    There have been popular conspiracy theories for years regarding the health of Hillary Clinton. I do not plan discussing or even acknowledging these assertions. Rather, I believe it is more important to discuss a change in current political traditions.  Presidential candidates should provide some form of confirmation by a group of physicians demonstrating that they are physically and mentally fit to serve as President of the United States.

    Obviously, amending laws to make this proposition mandatory is incredibly involved and generally unlikely. However, this change can still result from a shift in the social standard, if the candidates are pressed by the people and media.

    Why is this important from a bioethical standpoint? A sudden illness displayed to the public should not be the incident that prompts a release of medical records. The personal health of a presidential candidate is equally important as his policies. Trade negotiations, international crises, and other aspects of foreign policy suffer when a president is physically or mentally unfit to meet with other world leaders. At home, the sudden death or incapacitation of a president would rock the American political structure to its core.

As an American citizen, it seems almost morally wrong to elect a president who may fall into the aforementioned health category. I recognize that every citizen has a right to his privacy, and HIPPA laws do not allow healthcare workers to share private information regarding a patient’s health. However, Hillary Clinton’s recent medical episodes have prompted the need for change. All major presidential candidates should be assessed by a group of doctors in order to confirm that the candidate is fit to serve. An unhealthy candidate’s condition could worsen throughout the election cycle considering the intensity of the campaign trail, risking the safety of the candidate themself. The findings of these professional assessments should be released to the public for the sake of the people, the candidate, and the country.

Promising New Legislation for Flint’s Water Crisis

Flint, Michigan has been suffering from a water emergency for over three years. Budget cuts in Michigan ended up affecting basic necessities, including drinking water. Bankole Thompson, a reporter for the Detroit News, is calling this “Michigan’s Katrina.” He says that the state has created this problem for itself by ignoring important findings regarding resident’s health over the past few years. Following the initial discovery of the lead crisis, the mayor, backed by the Department of Environmental Quality, discredited residents’ concerns and said that the water was up to standards (Fonger). However, the takeover by the EPA a year later would suggest otherwise (Davey). Studies done by Virginia Tech showed that there is, in fact, an increased level of lead in the water supply (Davey). Unfortunately, this research went ignored, and the residents’  pleas for clean water only intensified.

Overall, there has been a seemingly apathetic response from the local and state governments. Since the switch of the pipelines from Lake Huron to the Flint River, there have been reports of elevated levels of lead in children’s blood (Davey). In addition, there have been only limited warnings about the spreading of Legionnaire’s disease – a severe type of pneumonia that can be spread through contaminated water sources (Davey, Legionnaire’s Disease). Finally , there have been state level restrictions preventing the city from switching their water source back to Lake Huron until the pipeline is completed, leaving the locals of Flint desperate for relief (Davey).

After switching the water source to the Flint River, forgoing corrosion controls, failing to issue proper alerts, and ignoring research and alerts from researchers and medical professionals, Flint Michigan may finally be seeing some relief from a new piece of legislation passed in the Senate (Davenport). The Water Resources and Development Act is meant to aid poor communities, including Flint, that are affected by lead-contaminated water supplies (Davenport). Funding allocated by the new piece of legislation could help purify the water supply and get clean water to an increasing number of people (Davenport). There is much potential for this act to have positive effects on the water supply in Flint, however, whether or not the funding will come through is another issue altogether. The bill awaits deliberation in the House, where the amount of spending will be determined, should the bill be passed. But with a 95-3 vote in the Senate, the its prospects are looking good.

References:

Davenport, Coral. "Senate Approves Funding for Flint Water Crisis." The New York Times. The New York Times, 15 Sept. 2016. Web.

Davey, Monica, and Mitch Smith. "What Went Wrong in Flint." The New York Times. The New York Times, 03 Mar. 2016. Web.

Fonger, Ron. "City Adding More Lime to Flint River Water as Resident Complaints Pour in." MLive.com. Advance Digital, 12 June 2014. Web.

"Legionnaires' Disease." Encyclopedic Dictionary of Genetics, Genomics and Proteomics (2004): n. pag. CDC, 18 July 2016. Web.

Thompson, Bankole. "Thompson: Flint Crisis Is Michigan's Katrina." Detroit News. The Detroit News, 13 Jan. 2016. Web.

Blanket Bans in the NHS: Utilitarian Justice or Unfair Discrimination

       Post-Brexit healthcare from the UK’s National Health Service (NHS) has been under continuous burden as a nearly exponential demand in patients and a diminishing supply of resources persists. In the midst of consistent pressure to deliver quality care with limited funding and lingering debt from previous overspending, the NHS has not set national standards for reform. Just recently, and nearly two months post-Brexit, The Guardian covered a shocking decision made by a local, clinical commissioning group (CCG) within the broader NHS system to alleviate healthcare pressure using a blanket ban. From this point forward, all clinically obese persons, individuals with a BMI of 30 or over, will be denied elective surgeries for up to one year in the Vale of York CCG (1).

Does this decision exercise appropriate principles of justice in biomedical ethics? Furthermore, what are the consequences of these measures? One result is clear - the decision did not come without criticism. President of the Royal College of Surgeons (RCS), Dr. Clare Marx, heavily denounced the Vale of York’s action as one of the most precarious decisions made in the present-day NHS (1). Dr. Marx further stated that the RCS is not only in support of aiding clinically obese patients in their desire for speedy medical interventions, but also that “[delaying] patients’ access to what can be life-changing surgery for up to a year is wrong” (1). One NHS bariatric surgeon, Dr. Shaw Somers, described the Vale of York’s denial of elective surgery to clinically obese persons “like discriminating [against] a segment of the population on the basis of their colour or religious persuasion,” markedly because obesity is a medical illness (1).

           Despite clear contentions, the Vale of York stood by its decision. The CCG argued that its recent mandate was necessary for optimal healthcare services given the stringent availability of resources (1). The NHS maintains the decision because the CCG is still within its legal right to pursue such an approach. While the NHS emphasized that further review should be taken, an NHS spokesperson did advocate for the possible outcomes of the CCG’s move: “Reducing obesity and cutting smoking not only benefits patients but saves the NHS and taxpayers millions of pounds” (1). In the end, the driving factor for the Vale of York is to distribute the maximum amount of services for as many patients as possible within their limited capacity.

    Yet, will the end justify the means? According to Tom Beauchamp and James Childress’ Principles of Biomedical Ethics, conflicts in distributive justice and allocation of goods and services in times of scarcity is a healthcare issue that has transcended all generations and borders (2). Moreover, inequalities in healthcare access raise important questions about the justice of decisions made by policymakers for the public good. In the case of the Vale of York’s decision to deny elective surgeries to clinically obese persons, a strong utilitarian theory of justice was applied by the CCG. Beauchamp and Childress highlight the definition and purpose of utilitarian justice as a means to maximize net social utility and form healthcare policies that are based on cost-benefit or risk-benefit analysis (2).

    Utilitarian justice has major advantages for the Vale of York CCG in a post-Brexit NHS. One idea that utilitarian justice might not consider, however, is the fair-opportunity rule of Rawlsian theory. As an example of egalitarian thinking, the fair-opportunity rule stresses that individuals should not be denied social benefits because of undeserved, disadvantageous conditions for which they have no control (2). An enlightening view of this theory offered by Beauchamp and Childress says that the intrinsic properties given to individuals by the social and biological “lottery” of life cannot be discriminated against in “social allocations if people do not have a fair chance to acquire or overcome these properties” (2).

           Since obesity is a medical illness, which is linked to a myriad of genetic, environmental, economic, and societal influences, should the fair-opportunity rule not apply to the decision made by the Vale of York (3)? If the answer were yes, then the connection between denying clinically obese persons standard access to elective surgeries based on the condition of their illness would classify as an unfair discrimination. Some might argue that without a strong utilitarian mode of justice, then the already limited NHS resources and funding would plummet.

    In response, I pose another scenario in which other CCG’s across the NHS uphold decisions to deny access the healthcare options to clinically obese persons. When access to healthcare becomes increasingly scarce for those populations of patients, is the interest of the common good truly being served to its maximum capacity? If we allow blanket bans to prevent or give lower priority healthcare access to those with intrinsic, disadvantageous conditions for which they have no control, then who will face unfair discrimination next?   

References:  

1.   Beauchamp, Tom L., & Childress, James F. (2009). Principles of Biomedical Ethics. New York, NY: Oxford University Press.

2.   Rawlinson, Kevin, and Chris Johnson. (2016, Sept. 3). Decision to deny surgery to obese patients is like 'racial discrimination'. The Guardian.  Retrieved from https://www.theguardian.com/society/2016/sep/03/hospitals-to-cut-costs-by-denying-surgery-to-smokers-and-the-obese

3.   Why People Become Overweight. Harvard Health Publications. Retrieved from http://www.health.harvard.edu/staying-healthy/why-people-become-overweight  

Are Women’s General Practitioners Failing to be Heart Smart?

    Women are  affected by heart disease at higher rates than men not because they don’t care about their health but because they aren’t being tracked by their doctors at the same rate as males. The reason men's heart disease rates have decreased over the past thirty years is because the focus of Public health campaigns, marketing for heart disease care and prevention as well as doctors fail to focus on women.

    A study in the European Journal of Preventive Cardiology found that male General Practitioners, GP’s, are less likely than female GP’s to collect information on smoking, blood glucose and cholesterol from their female patients than their male patients.  Female GP's were found to have a higher rate of compliance with the recommended guidelines for heart disease tracking and were more apt to ask their female patients the pertinent questions so they would be able to track their patient's health.  The findings are from Europe but the results still hit close to home.  Women are not being tracked as well as men when it comes to heart disease.  They are also failing to respond to campaigns aimed at preventing and decreasing heart disease.

    The majority of women’s health issues focus on reproductive health.  While it is important to pay attention to reproductive health it fails to take into consideration whole health. The years when women are of child-bearing age estrogen is thought to protect women from heart disease.  During these years women should have active conversations with their Gynecologist and/or their GP about heart disease and prevention.  The patient/physician relationship should be built so conversations regarding heart health and lifestyle are held at every chance the physician has to see their patient.  Increasing awareness at a during the doctor’s visit will help increase the likelihood women will take preventative steps to increase their heart health before the protective effects of estrogen dissipate.

    The next step to heart health lies in marketing how a healthy lifestyle will prevent heart disease later in life.  The National Institutes of Health found heart disease is still the leading cause of death amongst women despite preventive measures put in place in the 1980’s.  Their findings showed males have reduced their rate of heart disease while women remain at the same incident level.  The message needs to change to connect with women if they want to see a decrease in women's heart disease rates by changing the way the messages are sent in campaigns. Women need to be shown as actively fighting heart disease, not being the caretakers of men who are fighting heart disease.  Campaigns should empower women to talk to their physician about heart health by connecting with women at a personal level.

    It is important to include women in the process of creating public health campaigns and advertising for heart health.  Heart disease is the number one killer for women in general, specifically for Caucasians and African American women, their needs, how they respond to information and the way the information is presented must be considered.  There is a need to be cognizant of how women, especially those with a high risk factor, respond to campaigns for heart disease prevention.

    A lack of information, education and preventative marketing for women leads to a lack of improvement in women's heart health.  Campaigns which focus on women, their risk and their need to tell their doctor their health habits need to be created.  Patients and Physicians need to work together to find a solution to the leading killer of women together not separately.  Through a joint effort awareness can be raised, health habits addressed and heart disease decreased.  

References: 

1. Delpech,Raphaëlle,Ringa,Virginie, Falcoff,Hector, & Rigal,Laurent.  ( 2016, June 21).  Primary prevention of cardiovascular disease: More patient gender-based differences in risk evaluation among male general practitioners.  European Journal of Preventive Cardiology.  Doi: 10.177/2047487316648476.  Retrieved from http://cpr.sagepub.com/content/early/2016/06/09/2047487316648476.full.

2. National Institutes of Health.  (2010,February 2).  Even With Heart Disease Awareness on the Rise, Prevention Remains Critically Important for American Women: The Heart Truth campaign urges women to take action.  (National Institutes of Health Publication).  Retrieved from https://www.nih.gov/news-events/news-releases/even-heart-disease-awareness-rise-prevention-remains-critically-important-american-women

The Ethical Dilemma of Unaccompanied Minors from Central America: Rage

The raging desert ravages the lost

Refugee, immigrant, exilee... tread on

Fathers, brothers, sisters, lovers what cost

Your children take to escape death at dawn

Week 3

The raging sunbeam ravages the boy

Elements relentless, inflict their strife

King Fear reigns, “Water? Gangs? You I’ll destroy.”

Heat exhaustion, pain, pleading God for his life

Week 4

Raging gangs ravage the calico crew

Bloody, battered, bandage Nameless wounds

Robbed, raped, resigned- no one is good nor true

wonder if their death waits in Nameless tombs

Week 5

The raging thirst ravages rambling bones

Terrible thirst, child saints stumble along

Sinking slowly to deep abyss, unknowns

Dehydration.. hallucination.. Mom?

Week 6

A raging illness ravages two dears

Faceless boys in the faceless group collapse

“Leave us to die”, too dry for bitter tears

Nameless dying carried on Nameless backs

Week 7

“America the free we see!” they cry

Quiet white sky rages Nameless behind

Yesterday the two were left to die

Look left. Patrol. Refugees are confined.

1 year

Raging guards ravage the despised detained

Isolated, cold, deplorable blocks

“Apply for asylum? In hell remain

‘America the free we see!’ now mocks”

1 year- alternate ending

The raging love ravages the home

Orphan boys lawlessly find some peace

Raging love, for lawlessness, atone

“Rest now.” Eyes closed. See Nameless boys deceased.

*Poem inspired by true events. The friend who inspired this poem lived out the alternate ending, but far too many live out the first.

Concerns Persist Over Organ Harvesting in China

Concerns are again being raised over China’s execution of prisoners in order to use their organs for transplant. In today’s economy, organs can fetch a high price; in 2014 the organs of a single human body, including the heart, lungs, liver, kidney, pancreas, and intestines, were valued at $689,9001. Including medication, a hospital stay, and other fees associated with surgery, an organ recipient may pay nearly $1.2 million1. Today, the price is likely even higher.

With such high value placed on organs and an aging population increasingly in need of transplants, China has struggled to find voluntary organ donors. For years, global health officials were wary of China’s high execution rate and its reputed connection to organ donation. According to Amnesty International, China’s rate of capital punishment is one of the highest in the world, with over 1,500 prisoners being executed in 2015. 2 With such high execution rates and limited information on who is executed and on what charge, it is widely accepted that China was killing two birds with one stone: execution of political prisoners serves to eliminate anti-communist ideology and provides a source of much-needed organs.

Along withthe prisoners being held on death row for heinous crimes, those up for execution include political prisoners and prisoners of conscience3. It is believed that these include members of the persecuted Falun Gong religious group and suspected anti-Communists 3. Upon entering prison, reports confirm 3 that prisoners are subjected to medical tests, and the results stored in a database. Once the need arises, the prisoners are executed and the necessary organs extracted, or in some cases, the extraction is done on live patients to ensure a fresh transplant.3

In 2005, after years of global suspicion, China publicly confessed that the organs of executed prisoners were being harvested for transplants, and in 2011, China’s transplant chief Dr. Huang Jiefu estimated that 65% of all transplanted organs in China came from executed prisoners. 4 This renewed global concern over possible human rights violations. Finally in 2015, after facing increasing international pressure, Chinese officials announced that organs would no longer be harvested from executed inmates.

With well over half of organ transplants coming from executed prisoners, nobody expected an easy transition from a corrupt system to a permanent, ethical means of organ transplantation. Donors are scarce in China, in part due to a very limited organ volunteer system and cultural belief that it is inappropriate to disfigure a deceased body. However, when a Canadian patient in need of a kidney made a trip to China this year and received an organ in three short days4, eyebrows were instantly raised. Clearly, China has a long road ahead if it ever hopes to shed its reputation for unethical organ harvesting.

References:

1  Hanson, Steven. “2014 U.S. organ and tissue transplant cost estimates and discussion.” Milliman, 30 Dec. 2014, http://www.milliman.com/uploadedFiles/insight/Research/

      health-rr/1938HDP_20141230.pdf

2

Perry, Juliet. “Amnesty report: Executions at their highest level in 25 years.” CNN, 6  April, 2016, http://www.cnn.com/2016/04/05/world/amnesty-2015-death-penalty-report/index.html

3

Robertson, Matthew. “China’s Former Security Chief Implicated In Organ Harvesting.” Epoch Times, 16 Mar. 2015, http://www.theepochtimes.com/n3/  1287014-chinas-state-sponsored-organ-crimes-find-scapegoat/

4 Merchant, Norman. “Does China Still Harvest Organs of Executed? Doctors Divided.” Stars and Stripes, 27 Aug. 2016, http://www.stripes.com/news/

    does-china-still-harves-organs-of-executed-doctors-divided-1.425833

Eight African, Asian nations at risk for Zika outbreak

A new study jointly funded by the CDC and the Canadian Institutes of Health Research identified eight African and Asian nations that are at the greatest risk for experiencing outbreaks of the Zika virus in coming months. Using three different modeled scenarios, including one mirroring the spread of the comparable Dengue virus, researchers labeled India, China, the Philippines, Indonesia, Nigeria, Vietnam, Pakistan and Bangladesh as the countries most at risk (Sun 2016). The combined population of the affected areas is over 2.6 billion, and nearly 400,000 travellers visit the identified risk areas annually (Bogoch et al. 2016). The identified nations have warm, humid climates and are considered resource-limited and the populations immunologically naive, presenting a vulnerable breeding-ground for the Aedes aegypti mosquito and the Zika virus that it can carry. Some scientists hope that prior exposure to Zika in African and Asian nations, where outbreaks of the virus have previously occurred, will confer immunity to some members of the population.

References:

Sun, Lena H. "Zika Outbreaks Most Likely to Hit Eight Countries in Asia, Africa." Washington Post. September 2, 2016. Accessed September 10, 2016. https://www.washingtonpost.com/news/to-your-health/wp/2016/09/01/zika-outbreaks-most-likely-to-hit-these-countries-in-asia-africa/.

Bogoch, Isaac I., Oliver J. Brady, Moritz U G Kraemer, Matthew German, Maria I. Creatore, Shannon Brent, Alexander G. Watts, Simon I. Hay, Manisha A. Kulkarni, John S. Brownstein, and Kamran Khan. "Potential for Zika Virus Introduction and Transmission in Resource-limited Countries in Africa and the Asia-Pacific Region: A Modelling Study." The Lancet Infectious Diseases, September 1, 2016. doi:10.1016/s1473-3099(16)30270-5.

Online Reviews & Healthcare Quality

Doctors are subject to evaluation on many levels. Physicians may be judged on availability, and bedside manner, in addition to their ability to ameliorate patients’ conditions. Interestingly, the reliability of a physician when it comes to addressing health problems does not necessarily correlate to high ratings by patients (Carroll). Patients, or the subset of them who write reviews, may consider other factors more important than outcome. Review websites for doctors are extremely popular with upwards of 33 publically available sites for this purpose. (Lopez) With this many options for publically available data on patient satisfaction it may be appropriate to ask how hospitals determine whether they are meeting customer expectations.

The Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) survey is commonly used as a data source when comparing patient satisfaction levels. This survey is aimed at gaining patients’ perspectives and allowing consumers a way to evaluate the hospitals available to them. This survey also has made a goal of increasing the standards for care (HCAHPS...). Hospitals with better reports, as put forward by patients, are expected to accrue business based on their higher satisfaction ratings and the possibility of a larger market share will push hospitals to improve their reviews. However, some patients may not see alternatives to the hospital they have been using even if they were unsatisfied with their interactions or experience there; and some hospitals may not see improving survey results as a significant way to access more of the market. The levels to which the HCAHPS survey reflects hospitals’ quality have been debated and some studies show that hospitals that perform well on the survey have high clinical standards, while others show quite the opposite (Carroll).

In turning to online reviews hospitals may gain new perspectives on patient satisfaction and, in turn, their own performance. By looking at Yelp reviews instead of HCAHPS data researchers found 12 more metrics that play into a patient’s satisfaction (Carroll). This isn’t saying that the HCAHPS data isn’t a useful way to examine hospitals but does suggest that the factors that influence a patient’s hospital experience are diverse and not fully accounted for in the survey data.

Does the prevalence of online reviews change where we go for care? Do we seek out hospitals and doctors who are held in high regard? A recent study has shown we do: “we find robust evidence across several different conditions and performance measures that higher quality hospitals have higher market shares and grow more over time.” (Chandra). With this in mind it becomes clear that at least some patients see choice in where they go for medical care and can make decisions based on satisfaction as customers. Where patients  are gaining the data needed to make such decisions should be investigated further; online reviews may prove to be influential in this regard.

References:  

Carroll, Aaron E. "How Yelp Reviews Can Help Improve Patient Care." The New York Times. The New York Times, 12 Sept. 2016. Web. 12 Sept. 2016.

Chandra, Amitabh, Amy Finkelstein, Adam Sacarny, and Chad Syverson. "Health Care Exceptionalism? Performance and Allocation in the US Health Care Sector." American Economic Review 106.8 (2016): 2110-144. Web.

López, Andrea, Alissa Detz, Neda Ratanawongsa, and Urmimala Sarkar. "What Patients Say About Their Doctors Online: A Qualitative Content Analysis."Journal of General Internal Medicine 27.6 (2012): 685-92. Web.

http://www.hcahpsonline.org Centers for Medicare & Medicaid Services, Baltimore, MD. Sept. 12, 2016.

Home

When I graduated from high school, I went to a school as far away as I possibly could.  I ran away from my small hometown and never turned back.  I wanted to leave everything behind – the stares, the whispers, the feeling of being excluded – and start new where no one knew my health history.  I wanted to be anonymous, my surgeries and recoveries lost in the past.  I didn’t want to be known anymore as “that disabled girl” or “the girl who’s always sick.”  I wanted to be free of labels, free of those who knew me, free of my obsolete identity.

I read about the death of a childhood friend the other day and I was yanked home.  The memories came flooding back, and sadness took hold.  I can’t pretend that we stayed in touch; I hadn’t spoken to her in several years, even in this age of social media. And yet, I felt the loss.  Friends, townspeople, and the comfort of my small town crept slowly into my mind.  I wondered about the randomness of sickness, why it chooses one and not the other, the fates we are all dealt and how time can be clever and cruel.  I’m not an overly philosophical person; I like facts, I like concreteness, I like answers and now I have none.  I realized that I long to be home again.  I realized that even though I thought I could recreate myself, be new and become someone else, I had taken with me one thing I cannot rid myself of: my community.  I held on to the steadfastness of the farmers, the people’s belief in something bigger than themselves, and the lesson to “be you.”

I spent years running away from home, only to realize that it was with me this whole time.  I earned degrees which would allow me to help others.  I worked with women and children who had been physically, sexually, and emotionally abused.  They knew the haunting cry of pain, and I knew the steadfastness that comes with the belief and faith that you are not here in this world for yourself, but to serve others.  Hands that had been sculpted by years of reconstructive hand surgery held and comforted those who were hurt, hands that were viewed as “odd” wrote words that provided funding, and the hands that I had loathed for so long and had run away from had created opportunities for me.

Small towns have a funny way of calling you back home.  You find yourself in them, even if you are hundreds of miles away.  I am the product of the small farming town where I was raised.  I am finally beginning to realize that without them, I wouldn’t be where I am now. There’s no shaking my history, but in this knowledge I’ve found peace and resolve in my journey forward.

Nasal flu vaccine no longer recommended

FluMist, the flu vaccine in the form of a nasal spray, is no longer recommended in the guidelines set forth by the American Association of Pediatrics (AAP) outlining preventative flu measures (Scutti, 2016). This form of the vaccine was found to be not nearly as protective as hoped, reducing the chance of getting the virus by only 3% as compared to no intervention in children 2-17 years in a study conducted by the Advisory Committee on Immunization Practices, part of the CDC (Fox, 2016). The injected vaccine is effective for two-thirds of that same population.

           The difference in protective capacity stems from the type of vaccine. The shot is an inactivated vaccine (Scutti, 2016) in which all the virus particles are no longer pathogenic. FluMist, on the other hand, is a live attenuated vaccine, meaning that a weakened form of the virus is present. The inactivated virus with all of its parts usually develops a more protective immune response than a live attenuated virus. Everyone over the age of six months is strongly advised to get the vaccine. This is particularly important for vulnerable populations such as health care providers, young children, seniors, and pregnant women.

           AstraZeneca, the maker of FluMist, disputed the CDC findings (Fox, 2016). The pharmaceutical giant cited European studies and a Canadian study that found their vaccine to be effective. However, because the guidelines set forth influence vaccine availability in the US, it is unlikely that AstraZeneca will be able to fight back at all this year.

           One potential outcome of this change is that some people may choose to opt out of getting the shot. This may put particular populations more at risk. In this case, with FluMist most often being used to vaccinate children, they are the ones most likely to be at risk. However, Dr. David Henderson, an OhioHealth pediatrics physician, doesn’t think parents who have a history of vaccination will let their kid go without getting the vaccine (Scutti, 2016).

References:

Fox, M. (September 6, 2016). Pediatricians give thumbs-down to FluMist flu vaccine. NBC News. Retrieved from

Harris, R. (September 6, 2016). Pediatricians Recommend Flu Vaccination, Just Not with The Spray. NPR.org. Retrieved from http://www.npr.org/sections/health-shots/2016/09/06/492829843/pediatricians-recommend-flu-vaccination-just-not-with-the-spray

Scutti, S. (September 6, 2016). Pediatricians update flu vaccine guidelines to remove FluMist. CNN. Retrieved from http://www.cnn.com/2016/09/06/health/flu-season-flumist-spray-shot/index.html

EpiPens: A Life-Saving Necessity or Luxurious Expense?

Millions of Americans suffer from life-threatening allergies, whether the antigen are peanuts, shellfish, or latex. The one line of defense these people possess in the instance that they suffer from an anaphylactic attack is the epinephrine auto-injector. Epinephrine, also known as adrenaline, acts as a bronchodilator and vasoconstrictor, effectively opening a patient’s airway and allowing adequate blood flow to the heart and lungs by diverting it from the extremities. There is no other medicine that has these same effects. It is becoming more and more difficult for Americans to procure this pharmaceutical because of its ever-increasing price. This has become such a concern that one individual opted not to use her EpiPen during an allergic reaction because of the cost to replace it.

Mylan, the company that produces the ubiquitous EpiPen, owns about 90% of the $1.3 billion U.S. auto-injector market and has increased its price of an EpiPen by 450% since 2004 (Iozzo).  In 2004, the price of an EpiPen was $150, but has since skyrocketed to over $600. That cost reflects one dosage, but Mylan only sells EpiPens in packages of two. The pharmaceutical giant argues that a backup auto-injector is necessary in case the first one malfunctions. Therefore, buying this life-saving medicine costs consumers about $1,200. The actual epinephrine only costs Mylan one dollar to produce; the astronomical price of the product is mainly due to the company’s proprietary pen injector. Only recently, after much public pressure, has Mylan offered a discounted price on their EpiPen. However, even with this discount the product still costs well over $1,000. As a result, many consumers have attempted other ways to treat their allergies. An alternative company named Adrenaclick has emerged in the auto-injector market with a much cheaper product, selling for $142. While this product is much more affordable, doctors are hesitant to recommend it because the steps to use this new product are drastically different from those of the EpiPen (Cha). Since the EpiPen has monopolized the market, using a different product with different injection procedures will take time and practice. Doctors do not want individuals taking time during an emergency to stop and read the directions on how to use this relatively new product. Additionally, individuals have begun to create their own concoctions of epinephrine and use that in place of an EpiPen. This latter trend greatly worries legislators, particularly Iowa Senator Charles E. Grassley: “I am concerned that the substantial price increase could limit access to a much-needed medication. It could also create an unsafe situation as people untrained in medical procedures are incentivized to make their own kits”. The alternatives to using EpiPens are not very well established, so many consumers are forced to pay the exorbitant amount to use Mylan’s product. Those who cannot afford an EpiPen are turning to very drastic and radical measures to protect themselves in case they suffer an allergic reaction.

Alyssa Rosenberg has suffered from a severe tree-nut allergy since she was a toddler. Because of this diagnosis, she has needed an EpiPen for practically her entire life. Alyssa has lived a very functional and fulfilling life, as many allergy-sufferers do. However, last spring she had to make a decision after unknowingly eating kale chips that were seasoned with cashew dust. She reasoned that she would not have to go to the hospital, so rather than using her EpiPen she made herself vomit. Rosenberg went on to say that her health insurance plan is very expansive and that she rarely has allergic attacks. The attack she had last spring was the first one she had had in about ten years. Even though all of this is true, she still believed that not using her EpiPen was the best thing to do when she had an allergic reaction. There are many individuals in the United States who have very poor health insurance programs and use their EpiPens several times a year. The cost of replacing EpiPens to them is most daunting, and must be mitigated so that people do not have to think twice about using their EpiPen in the appropriate situation.

Epinephrine injection is the only way to treat anaphylactic shock in a patient, and the EpiPen is the only credible product available to people suffering from anaphylaxis. Mylan has consistently raised the price of their EpiPen over the past twelve years, which has greatly reduced individuals’ ability to purchase the device. This inability to access an EpiPen has lead people to make radical and potentially-dangerous decisions about treating their allergic reactions.

References:

Cha, A. E. (2016). U.S. lawmakers demand investigation of $100 price hike of lifesaving EpiPens. The Washington Post. Retrieved from https://www.washingtonpost.com/news/to-your-health/wp/2016/08/23/u-s-lawmakers-demand-investigation-of-100-price-hike-of-life-saving-epipens/?tid=a_inl.

Iozzio, C. (2015). How one startup plans to end the EpiPen monopoly. Fortune. Retrieved from http://fortune.com/2015/07/21/epipen-alternative-medicine/.

Rosenberg, A. (2016). EpiPens are my armor against disaster. They shouldn’t be priced like a luxury. The Washington Post. Retrieved from       https://www.washingtonpost.com/news/to-your-health/wp/2016/08/25/epipens-are-my-armor-against-disaster-they-shouldnt-be-priced-like-a-luxur