Julianna Snow, a five year old from Portland, Oregon with an incurable neurodegenerative illness called Charcot-Marie-Tooth disease, has told her parents she would prefer to go to heaven next time she gets sick rather than the hospital. Even if doctors are able to save Julianna from her next illness or health scare, Julianna’s long-term prognosis includes being hooked up to a respirator with a very low quality of life. Julianna’s parents, Michelle Moon and Steve Snow, jumped into the heated debate regarding end of life decision making via Michelle’s blog, where they announced that next time Julianna is sick, they may not take her to the hospital.
Adults with capacity have the right to determine their end of life care. However, practical and ethical concerns arise with allowing minors to decide their own end of life care. Medical experts and those familiar with Julianna have various opinions regarding the issue, but the question remains: to what degree should Julianna’s parents follow her wish to go to heaven (and thus forego life-sustaining care) when she gets sick again? Bioethicist Art Caplan explains that he does not believe a four year old can understand the concept of death. Dr. Chris Feudtner, a pediatrician and ethicist, disagrees with Caplan, arguing that only Julianna understands the true ramifications of her progressive neurodegenerative disease.
It seems that when Julianna becomes sick again, Steve, Michelle, and Julianna will make the decision together about whether Julianna should return to the hospital.
California Governor Jerry Brown signed a bill on October 5, 2015 that makes California the fifth state to allow physician assisted suicide (“PAS”). Governor Brown indicated that he is unsure if he would utilize PAS himself. However, he did not want to deprive others of this option.
Passage of the bill must be credited to Brittany Maynard, who captured national attention and brought support to the end of life movement in 2014. Maynard was diagnosed with terminal brain cancer, and she decided to relocate from California to Oregon to die with dignity on her own terms. Although Maynard died in November 2014, her captivating story and leadership has urged states to consider allowing PAS. Currently, 24 states and the District of Columbia have considered bills that would authorize some version of PAS. It is predicted that the passage of California’s bill may encourage these states to finalize and pass their bills as well.
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.
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.”
“Do Not Resuscitate” (DNR) orders only apply to situations of cardiac arrest. According to the NYS Department of Health, DNR orders have no application to any other medical situation or treatment. That is not always clear, however. As a result, DNR orders are sometimes relied on by medical professionals’ to suggest patients’ wishes in situations other than cardiac arrest. Moreover, a patient could have a DNR order because she suffers from a chronic illness, yet if she were in a car accident, and the resulting injuries required life-sustaining treatment, she may not want the DNR to apply.
In answer to the problems created by DNRs, almost all of the states in the U.S. have adopted or are in the process of adopting “physician order[s] for life-sustaining treatment” (POLSTs). (NY uses a comparable form called a MOLST (Medical Orders for Life-Sustaining Treatment.) POLSTs are more explicit than DNRs, and they specify “a patient’s goals and desires as death closes in.” A POLST must be signed by a doctor or other medical professional, and in most states the patient or a designated surrogate must sign also. Yet, in states such as New York and Oregon, the patient does not have to sign. Some disability advocates argue that patients’ signatures should be required in order to signal full consent. Read more here.
George Sanders, 86, was arrested last fall for killing his wife Virginia, 81. Virginia was diagnosed with multiple sclerosis in 1969 and more recently with gangrene on her foot. George was his wife’s sole caregiver, however his own health was deteriorating. When George was arrested for his wife’s murder last fall, he was charged with first-degree murder. He claimed that his wife begged for him to kill her as she was facing hospital admission and then a nursing home for the rest of her life. George subsequently pleaded guilty to manslaughter and faced a sentence of up to 12 years in prison. At sentencing, the prosecution asked the judge not to sentence George to prison, stating “I don’t know where our society is going with cases like this, judge . . . At his point in time, what Mr. Sanders did was a crime.” The prosecution also noted the “very unique, difficult circumstances of [the] case.” Ultimately, the judge sentenced George to probation, a sentence that the judge believes “tempers justice with mercy.”
The Health & Welfare Committee of the Vermont State Senate recently voted in favor of a physician-assisted suicide measure that, upon the request of a terminally ill patient, allows a physician to prescribe a lethal dose of medication. The Committee also made changes to the bill, such as removing a requirement that terminally ill patients seek palliative care before ending their lives under the law. Instead, physicians will be required to discuss palliative care with patients seeking to utilize the statute. In addition, the Committee removed a requirement that prosecutors must prosecute if a person other than the patient illegally participates in the patient’s death. As revised, such prosecution will be discretionary. Next, the full Senate will vote on the bill and if it passes, it will head to the House of Representatives.