Julianna Snow, a 5 year old girl who suffered from an incurable neuromuscular disease, died on June 14, 2016 after a long, hard fight that sparked a great deal of debate among bioethicists. Julianna was diagnosed at 2 years old with Charcot-Marie-Tooth disease, and by 4 years old she could not use her arms or legs and had to use a feeding tube. However, the effects of her illness were only physical and not mental. After being in and out of the hospital, Julianna’s parents were informed they would need to make extremely difficult medical decisions the next time Julianna got an infection that would make it hard for her to breathe. Even though Julianna was only 4 years old, her parents decided to include her in such medical decisions. To honor her wishes to “go to heaven” and not go back to the hospital, her parents decided to care for Julianna in the comfort of her own home.
This decision was highly criticized by some who believed Julianna’s parents “painted a coercive picture” to influence their daughter’s decision to “go to heaven.” Bioethicist Arthur Caplan, for example, argues that a 5 year old child is incapable of making this kind of decision especially in light of the case of Cassandra C., a 17 year old girl who refused chemotherapy but was mandated to receive treatment when a court concluded she lacked capacity to make such decision. Yet, the doctors who were most involved in Julianna’s care supported her parents’ decision. Even Bioethicist Arthur Caplan admitted after meeting Julianna that “she taught [him] and others that even a child can become very knowledgeable about a challenging illness and can convey thoughtful and remarkable feelings about her illness and her ideas.”
Julianna received hospice care for the last 18 months of her life and in that time she celebrated her fifth birthday as a princess. She died in her mother’s arms at home in her princess room.
What happens to a blood sample, or tissue from a biopsy, once the procedure is done and a nurse walks away with it? Most patients simply assume that it is used for whatever medical test their doctor ordered, but they do not consider what happens afterwards. Contrary to what most assume, tissue and other bodily matters that are the “leftovers” of a medical procedure can be used for research purposes. In fact, under the old Common Law Rule, researchers do not need to notify or obtain permission from patients before using such leftovers. The only limitation is that the bio-specimen must be non-identifiable. However, in recent years, scientists have discovered a way to re-identify anonymous samples by relying on DNA testing and publicly available information. Ethical concerns about re-identifying bio-specimens are reminiscent of concerns that surround the famous case of Henrietta Lacks, who died in 1951; yet, her so-called “immortal cells” are still used in laboratories to this day.
In order to address these concerns, the Department of Health and Human Services (“HSS”) has recently proposed a rule that would change the consent requirements. In particular, the rule would require researchers to obtain very broad consent for use of all bio-specimens, even those that are anonymous. In short, patients would be consenting to the use of their tissue and other bodily matters in all potential and unknown future research. The consent would also include permission for the researchers to access the patient’s identifying information. HHS has not yet released a template for the consent form. And while this rule would be a step forward in mitigating ethical concerns, critics say that even stricter requirements must be in place to ensure truly “informed” consent.
In the wake of increasing publicity about concussions sustained by football players, bioethicists are debating whether public school tackle football programs should be banned. According to some bioethicists, students under age 18 cannot give informed consent because the human brain is not fully developed before then. In addition, bioethicists cite concerns about pressure from student football player’s parents to succeed so that they may become professional athletes. Furthermore, coaches and doctors may not have the best interests of the player at heart since they are torn between putting the player’s health first and maximizing the interest of the “football industry.” Risks faced by young players, according to Dr. Bennet Omalu, who first identified Chronic Traumatic Encephalopathy (CTE) in football players, include “major depression, memory loss, suicidal thought and actions, loss of intelligence as well as dementia later in life [and] drug and alcohol abuse as the child enters his 20s, 30s and 40s.” As a result, some bioethicists believe that “primordial prevention” efforts should be made to ban public support for high school football programs to remedy the “environmental, economic, social and behavioral conditions, cultural patterns of living known to increase the risk of disease.” Such efforts include opposition to public support for bonds to build stadiums or athletic facilities for junior or senior high school football, but would allow for the continuation of private football programs.
Despite these concerns, support for public school football programs is deeply ingrained in American culture and the sport is a popular national past time. In addition, without such programs, students may not be able to earn additional credit for playing the sport, which may negatively impact some students.
Nat Turner, along with his former University of Pennsylvania classmate Zach Weinberg (the pair previously founded the tech firm Invite Media that was eventually purchased by Google for $81 Million), created Flatiron Health. The company began collecting data on cancer treatments with the purpose of creating a database focused on providing doctors and cancer centers with helpful cancer treatment data.
Flatiron, now up and running for two years, charges cancer centers for access to its database and they contribute specifics about actual cancer cases, with patients’ personal information redacted. The information includes course of treatment prescribed, and the outcome.
Soon, Congress will hear testimony concerning the Helping Families in Mental Health Crisis Act. Republican representative, Tim Murphy, from Pennsylvania, sponsored the bill, and, though many agree that the mental health care system requires revamping, some provisions in the bill have sparked controversy. Among the more controversial provisions is one that supports the increased use of involuntary outpatient treatment—via court-ordered therapy for “certain mentally ill people with a history of legal or other problems.” Detractors of this provision claim that it will erode trust in doctor-patient relationships, and that it presents a civil rights issue. However, 45 states have compelled treatment programs already, one of which is New York.
New York’s compelled treatment program, Kendra’s Law, was passed in 1999. Since the implementation of Kendra’s Law, studies show that the percentage of patients returning to the hospital or getting arrested has greatly decreased. The statistic is significant, as “about 350,000 Americans with a diagnosis of severe mental illness…are in state jails and prisons” and the availability of psychiatric beds meets only 10 percent of that need.
Anti-fetal homicide laws were enacted originally to protect mothers of unborn children against violent acts. Yet, in reality, “they’ve led to disproportionate prosecution against African American women who suffer miscarriages.” An ongoing case in Mississippi could set a dangerous precedent with regard to the criminalization of pregnant women for their purportedly reckless acts. Rennie Gibbs was charged with the murder of her unborn child after it was stillborn when she was 16 years old. Gibbs is being prosecuted for “depraved heart murder” because the autopsy showed that Gibbs had used cocaine during her pregnancy—but the cause of death was originally attributed to the umbilical cord being wrapped around the infant’s neck. That cause of death was never ruled out.
A bitter court battle is raging over whether an elderly Brooklyn woman should continue to be kept alive. Sylvia Sodden, 78, is still on life support, even though her original health care proxy agreed to its removal. In 2011, Sodden appointed her godson, Joe Arrigo, as her health care proxy. Arrigo is Catholic, and states that Sodden converted from Orthodox Judaism to Catholicism when she was 20 years old. He states also that Sodden did not want to be on life support, and that “she didn’t want to end up like this.” He consulted with two priests prior to making the decision to remove life support.
However, on March 18, 2014 a Brooklyn Supreme Court Judge determined that Esther Feigenbaum, Sodden’s sister, would replace Arrigo as Sodden’s health care proxy. Feigenbaum claims that Sodden never converted, and that shutting down life support is “anathema to Orthodox Jewish belief.” The Court indicated that part of its decision to divest Arrigo of his role as health care proxy rested on the fact that Arrigo was absent from Court on the day of the proceedings. Arrigo maintains that he did not know he was supposed to appear.
JAMA Internal Medicine published a research letter by authors J. Eric Oliver, PhD and Thomas Wood, MA, which indicates that almost half of the nation believes in at least one health conspiracy. For example, thirty-seven percent of Americans believe that the Food and Drug Administration is concealing natural cures for cancer in response to industry pressure from pharmaceutical companies. The authors conducted an online survey of 1,351 adults; the survey posited four health conspiracy theories. Forty-nine percent of those polled indicated that they believe at least one of the proposed theories, and eighteen percent believe in at least three. According to Oliver, the takeaway from the survey “is that people who embrace these conspiracies are very suspicious of traditional evidence-based medicine.
Dr. Sandeep Jauhar, a cardiologist, offers anecdotal evidence in support of his argument that even though autonomy is, and should be, medicine’s guiding principle, paternalism has its place. The principle of autonomy in medicine encompasses a patient’s right to direct care his or her care, and requires the doctor to fully inform the patient regarding medical treatment. Dr. Jauhar reflects on his early belief that autonomy was “an absolute good, an ethical imperative that trumped all others.” After some years practicing medicine, his belief has changed.
Dr. Jauhar has come to believe that “no ethic in medicine is absolute.” Though the consequences of a breach of trust between a physician and a patient are severe, the consequences of full disclosure can be adversarial to the doctor’s duty to select the best course of treatment for his or her patients. However, Dr. Jauhar states that if a doctor believes that a paternalistic approach is necessary to a patient’s care, a soft approach is most appropriate. He describes hard paternalism as “coercive,” while soft paternalism “involves negotiation.”
A nurse named Barbara Mancini was accused of homicide in 2013. Allegedly, she handed her father a bottle of morphine with the intent to assist in his suicide. Her father, Joseph Yourshaw, 93 years old, suffered from end stage renal disease and was in home hospice. However, the case has been dismissed. Judge Jacqueline Russell stated in her decision that the Pennsylvania Attorney General did not prove that Ms. Mancini gave Mr. Yourshaw the morphine with the intent to assist in his suicide, and that Ms. Mancini could have intended solely to alleviate his suffering. Some believe that though assisted suicide is legal in five states only, this decision “is the latest in a series of recent developments signaling the reluctance of courts” and legislatures to criminalize medical treatment that “may hasten death.”