By Piotr Tekiela (left), Lauren Ottenhoff (center) and Michael Schneck (right), Loyola University Chicago, Stritch School of Medicine
With the steady rise of high acuity complex cases, physicians are increasingly finding themselves navigating the legal system about decisional capacity. Decision-making authority can vary in the United States by individual state (as discussed in the one of the recent ethics papers in Currents) but can also vary internationally, depending on resources, societal norms and community relationships. The areas of consent, patient autonomy, and the right to expect or refuse medical interventions are having increasing visibility in the media, and the differences in approach between the United States and the United Kingdom, which share a common legal system but have different healthcare systems and different approaches to individual health decision-making processes, is highlighted in this review.
In the 1970s-1990s, there were several cases in the U.S. that were taken to court where families were fighting to withdraw care. The Quinlan case (1976), the Cruzan case (1990) and the Schiavo case (1990) all involved young adult females who unfortunately suffered brain damage (from different etiologies), which eventually left them in a persistent vegetative state. After a year, the father of Karen Ann Quinlan requested that care be withdrawn, which was later denied and taken to the New Jersey Supreme Court. The court ruled in favor of the father stating that the right to privacy includes a right to refuse medical care, which also includes incompetent patients and can be exercised on their behalf by their legal guardian.
In contrast, four years later, the family of Nancy Cruzan requested to stop artificial feedings. This request was denied, and the case was taken all the way to the U.S. Supreme Court. The final decision ruled in favor of continuing the artificial feedings by calling on the Fifth Amendment’s guarantee that no person shall “be deprived of life, liberty, or property, without due process of law” and despite the patient being mentally incapacitated they are still granted these same rights” The U.S. Supreme Court, however, allowed states to impose restrictions on what is determined to be acceptable “evidence of the patient’s prior wishes.” Friends and family of Nancy Cruzan later provided evidence to the court that confirmed the she had previously expressed she would not want artificial feedings continued, which led to the termination of this intervention. This case in particular established a constitutional protected liberty interest in refusing medical treatment but did not imply a correlative right to demand treatment.
In the third prominent case, after eight years without any neurological improvement, Terri Schiavo’s husband, as legal guardian, requested that the feeding tube be removed. Her parents at the time objected to this and took this case to court. In 2000, a Florida circuit judge determined there was clear and convincing evidence that Schiavo would have not wanted to be kept alive in this state and ruled to honor her wishes. Her parents made multiple attempts to reverse this ruling, and the case was eventually taken to the Florida Supreme Court in 2004, which upheld the lower court’s decision. The U.S. Supreme Court also agreed with the prior rulings and refused to hear the case. This case specifically highlights that incapacitated patient can refuse medical interventions if the correct documents are in place prior to the event, including an advance directive or living will, a physician order for life sustaining treatment or by direction of their surrogate. Some states do impose limitations on a surrogate’s authority to withhold or withdraw care if they were not appointed by the patient prior to the event. These cases were instrumental in establishing legal norms for terminating end-of-life treatment in the United States and emphasize the right to refuse medical interventions.
In each of these cases, however, there was evidence that the patient, supported by a family member, would have wanted care to be withdrawn. The much publicized Jahi McMath case is an example of a U.S. family’s ability to circumvent medical expertise, based on patient or family wishes, even in the extreme case of a declaration of death. This case involved a 14-year-old girl who was declared braindead in 2013, following surgical complications in a California hospital. The family in this case refused to accept the declaration and sued to overturn the declaration of death. Ultimately, the family was allowed to remove the patient, even with a legal declaration of death, and find a hospital on the East Coast that was willing to maintain life support despite the legal declaration of death in California.
As in the U.S., the U.K. acknowledges the high priority of patient autonomy. Those with decision-making capacity are free to do so as long as the principle of informed consent is upheld. The most recent legal iteration of this principle in the U.K. was the case of Montgomery Law vs. Lanarkshire Health board in 2015. This emphasized the paramount importance of informed consent requiring that a patient be informed of important risks and benefits. This case overturned a previous law, Sidaway 1985, which stated that whatever risks, benefits and complications deemed reasonable by the clinician would be presented. The question of what a clinician deemed relevant, if ever challenged in court, would be upheld by the Bolam test. The Bolam test (1957) is used to assess negligence and requires that the clinician being sued shows that an expert opinion does not require consensus and an expert would have done the same thing in a similar situation.
Once the patient has been properly informed, however, the patient is free to make his or her own decision regardless of what medical experts believe since it is presumed that the patient knows what is in their best interest. Autonomous decisions make headlines less frequently (except perhaps in the case of “assisted suicide”). Rather, it is when decisions are made for others (i.e. children or those who lack decisional capacity) that this controversy arises. Making a decision for a family member who does not have decision-making ability or with children is where the “best interest principle” comes into play. The Charlie Gard and Alfie Evans cases in the U.K. were disagreement about the child’s best interest by the parents and U.K. healthcare staff occurred and required a court to decide on behalf of the children.
Alfie Evans was a 2-year-old boy who suffered from an undiagnosed degenerative neurological condition. He was admitted to Alder Hey Children’s Hospital in Liverpool in December 2016. Alfie remained in a semi-vegetative state for more than a year, during which time doctors and Alfie’s parents clashed over what was in Alfie’s best interest. The decision to withdraw life support occurred after it was determined by the medical personnel that Alfie had catastrophic degradation of his brain tissue and that further treatment was futile, unkind and inhumane. Further complicating this matter was that a hospital in Italy, with links to the Vatican, offered to continue treatment, but the request for transfer by the parents was denied on the basis of the argument that this was not in the best interests of the terminally ill child despite the parents disagreement about the determination of “best interest.” After a lengthy legal battle, life support was turned off and Alfie Evans died on April 28, 2018.
Charlie Gard was born on Aug. 4, 2016, full term and without any obvious complications. Within a few weeks of his life, his parents were concerned about his development, and he was admitted to Great Ormond Street Hospital (GOSH). At that time, he was diagnosed with MDDS (infantile onset encephalomyopathic mitochondrial DNA depletion syndrome). Currently, there is no defined/approved treatments for this disease. GOSH did research and considered treatment referrals for a nucleoside treatment that is being investigated for early intervention of this condition. Unfortunately, after tests showed Charlie’s brain likely had reached the stage of severe epileptic encephalopathy, doctors determined that this treatment was not in Charlie’s “best interest.” Charlie’s parents were in agreement if that there was no treatment that could improve his quality of life then life was not worth sustaining in its deteriorating state. However, the parents felt that nucleoside treatment could indeed help and so went to court as no agreement could be reached between the hospital and Charlie’s parents through mediation. The U.K. court then declared that the therapy was not in Charlie’s best interest; this decision was challenged and upheld at three levels of U.K. courts of appeal. Subsequently, in July 2017, a United States neurologist, who had a commercial interest in this treatment, offered to provide nucleoside treatment, so the case was reopened in the U.K. courts. The parents raised $1.3 million through web-based fundraisers in order for Charlie to get this treatment, but the U.K. court’s decision remained unchanged. Charlie was then moved to hospice care and later died on July 28, 2017, at 11 months of age.
Under U.K. law, when no agreement can be reached between families and clinicians, the decision is made by the courts, in accordance with the 1989 Children Act, that notes the state has the right to determine a child’s best interest and therefore should intervene if a child is at risk of harm. There is a similar “best interest of the child” doctrine in the United States that has been applied in similar pediatric cases. In the United States, however, the best interest is usually applied only when families refuse treatments (i.e., blood transfusions to minors in families whose religious belief opposes such transfusions). The U.K. courts, in both the Gard and Evans cases, made decisions about withholding provision of additional care, as being in the child’s “best interest” contrary to the parents’ wishes, leading to the subsequent social media outcry.
The recurring principle that drives decision-making processes for all parties, whether this be parents, clinicians or courts, is the idea of “best interest.” There is typically no argument among decision makers that they truly believe have the child’s best interest in mind. The disagreement, however, is what that truly means in a specific context. For the courts, typically this means that which is in the best interest of the child through the perspective of the child. In the U.S., typically this determination of best interest of the child is defined by the parents (assuming their parental rights have not been terminated). In the U.S., where individual liberty is paramount, many will argue that the parents are the best advocates for their children even if the parents might be “compromised” by outside influences (advocacy groups, social media, etc.) or where the parents’ decisions seem to be in contravention to medical facts. The Jahi McMath case involving a teenage girl who was declared braindead in California but where the parent was allowed to transfer the child to a New Jersey Hospital is the extreme example of this approach.
In contrast, professional societies like The Royal College of Pediatrics wrote guidelines (2014) regarding pediatric withdrawal of care. These guidelines describe three circumstances where treatment should be withdrawn: 1) when treatment is unable or unlikely to prolong life; 2) when treatment may prolong life but cause unacceptable pain and suffering; and 3) when children with a life-limiting illness who repeatedly state they do not want treatment and have the approval of both doctors and parents. In the U.K. formulation, the government has the right and obligation to step in and stop parents from what medical professional then determine as abusive behavior. In 1989, the U.K. government motivated by the Cleveland Scandal of 1987, and its resulting public outcry wrote laws that would specifically allow the government to intervene and stop these abuses.
Today we are hearing a social media outcry to remove the U.K. courts from this decision-making process. A fundamental question arises, in comparing the U.K. and U.S., which share a similar jurisprudence system but different cultures: What processes are in place to balance out autonomy and the best interest principle, and if a balance is not achievable, who is the correct arbiter? As noted, U.S. culture favors autonomy and individual liberty and so vests that interest in the family, at least in regards to withdrawal of care. In the U.K., where a more statist approach to healthcare exists, the “best interest” may be determined by other actors, including medical professionals and the courts. How we insure that the patient’s autonomy and best interest are preserved, particular for those who lack decision-making capacity, is an increasing challenge to practitioners in the neurocritical care setting and societal preferences and cultural norms on both sides of the Atlantic will continue to influence this evolving debate.#LeadingInsights #Ethics #International #PiotrTekiela #LaurenOttenhoff #MichaelSchneck #June2018