Picozzi et al. BMC Med Ethics (2021) 22:88 https://doi.org/10.1186/s12910-021-00656-w RESEARCH ARTICLE Open Access Analyzing the paradigmatic cases of two persons with a disorder of consciousness: refections on the legal and ethical perspectives Mario Picozzi1,2* , Lino Panzeri3, Davide Torri4 and Davide Sattin2,5 Abstract Background: Media have increasingly reported on the difculties associated with end-of-life decision-making in patients with Disorders of Consciousness (DOC), contextualizing such dilemma in detailed accounts of the patient’s life. Two of the frst stories debated in the scientifc community were those related to the cases of two women, one American, the other Italian, who captured attention of millions of people in the frst years of this third millennium. Methods: Much has been written about the challenges of surrogate decision-making for patients in DOC, but less has been written comparing these challenges across legal systems and cultures. In our paper, we propose a sys- tematic analysis of the fnal legal documents written by the American and Italian Courts in relation to the two cases, developing our discussion around three areas: the level of certainty/reliability of diagnosis and prognosis, the recon- struction of self-expression, time of illness and time of care. They are examples of the typical issues discussed by legal authors and allow us to understand the link and the diference between the legal and ethical perspectives. Results: The legal approach to the two cases has some common elements: the need to be certain about the diagno- sis and prognosis and the fact that the clinical criteria are necessary in determining the most appropriate treatments, although these criteria are not sufcient unless they are supplemented by the patient’s will. The issue of relations takes on importance both from a legal and an ethical point of view, but from two diferent perspectives. While ethics safeguards relationships by guaranteeing their diferences and makes them reconcilable, law safeguards relationships by guaranteeing the cold forms of respect, equality, impartiality, symmetry, reciprocity, and irreversibility. In this per- spective, the link between the time of care and the decision of the family members assumes importance. Conclusions: The most interesting point that emerges from our analysis is the issue of relationships and how they afect decisions, both from a legal and ethical point of view. For this reason, during the patients’ hospitalization, it is necessary to identify ways in which they might give their opinion about the moral issues underlying their choices. Keywords: Disorders of consciousness, Vegetative state, Reconstruction of self-expression, Time of care, Relationship between law and ethics, Eluana Englaro, Theresa Marie Schiavo Background Vegetative state (VS) is a clinical condition of wake- fulness without awareness caused by traumatic and non-traumatic brain injuries [1]. Te term “persistent *Correspondence: [email protected] vegetative state” was originally proposed by Jennett and 1 Center for Clinical Ethics, Biotechnology and Life Sciences Department, Plum in1972 to describe patients with brain damage in University of Insubria, Varese, Italy a state that “was no longer coma but was not recovered Full list of author information is available at the end of the article © The Author(s) 2021. 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The Creative Commons Public Domain Dedication waiver (http:// creat iveco mmons. org/ publi cdoma in/ zero/1. 0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data. Picozzi et al. BMC Med Ethics (2021) 22:88 Page 2 of 9 and that did not demonstrate any adaptive response to discussions are usually confned to a particular legal sys- the external environment” [2]. Patients in VS normally tem. Less has been written comparing these challenges have their eyes open while awake and closed while asleep, across legal systems and cultures. In our paper, we pro- they breathe spontaneously, have preserved autonomic pose a systematic analysis of the fnal legal documents function, eyes blink, have roving eye movements, and written by American and Italian Courts in relation to the facial movements. Tey could have limb spasticity and two above mentioned cases to highlight themes requiring pseudobulbar palsy. But to the fullest extent determina- further ethical scrutiny. Tis analysis will be developed ble, they lack awareness of themselves and their environ- around three points: the level of certainty/reliability of ment [3] and so they require complete assistance by other diagnosis and prognosis, reconstruction of self-expres- people. sion, time of illness and time of care. Tese points repre- Te consensus statement built in 1990 by the Ameri- sent issues discussed in both ethical and legal literature. can Medical Association’s Council on Scientifc Afairs and Council on Ethical and Judicial Afairs [4] presented Methods the appearance of virtual unanimity among the govern- Biographical sketch ing elements of American medicine on a linked series of Theresa Marie Schindler (Schiavo) (TMS) beliefs on the diagnosis, treatment, and ethical status of Teresa Marie Schindler was born on the 3rd December post-coma patients. Tese medical conventions are gen- 1963, and in the early morning of February 25 in 1990, erally accepted unquestioningly as constituting a factual she was taken to Humana North-side Hospital in St. foundation for ethical debate on VS or unresponsive Petersburg after a cardiac arrest. Te cause of the col- wakefulness syndrome (UWS), a condition that is still lapse is disputed (probably caused by low potassium lev- at the center of ethical debate, as demonstrated by the els due to an eating disorder) and when Teresa Schiavo increasing number of articles published on it in the last emerged from the coma she was in a completely unre- years [5–7]. sponsive state in which she would remain for the next However, debate is not relegated to the the scientifc ffteen years (although it has been debated if she actually platforms, but also amplifed by media. In fact, media was in Minimally conscious state, as was sustained after have increasingly reported on the difculties associ- the presentation of a video by media). ated with end-of-life decision-making in Disorders of A ruling by Judge George Greer of the 6th Judicial Cir- consciousness (DOC), contextualizing such dilemma in cuit Court in Clearwaterin in February 2000, based on detailed accounts of the patient’s life. the testimony of Michael Schiavo (husband), his brother, For example, the stories of Teresa Marie Schiavo and his brother’s wife, in which was shown that Teresa (from now named TMS) [8, 9] and Eluana Englaro (EE) made casual statements to them a year before her injury [10, 11], one American, the other Italian, captured atten- that she would not want to be kept alive artifcially, estab- tion of millions of people in the frst ten years of this lished that Teresa’s feeding tubes (through the feeding third millennium. tubes both hydration and nutrition are provided) must Patients with a Vegetative State diagnosis could be con- be removed. Te Schindler family maintains Teresa sidered a paradigmatic case of extreme disability: they has consistently exhibited a strong will to live, and they have a non-degenerative health condition, the impossibil- opposed stopping their daughter’s nutrition. Judge Greer, ity to communicate with others and a high need of sus- in November 2002, reafrmed the Court’s original rul- tain from environmental factors [12]. ing and he ordered the feeding tubes be pulled January Legal actions toward the end of life decisions were pro- 3, 2003. Numerous Courts of Appeal and federal Court posed by EE’s relatives in contrast to government policies motions delayed this second removal until October 15, and by TMS’s maternal family members who opposed 2003. TMS endured six days of dehydration before public TMS’ guardian decision. All judges involved in those support for the incapacitated woman prompted Florida’s legal processes required several medical evaluations but Legislature to pass “Terri’s Law”, which empowered Flor- it is difcult to determine which and how much medical ida’s Governor to order Teresa Schiavo’s feeding tubes aspects (worst prognosis, incapacity to interact with the reinserted. Some months later, after having passed on the environment, absence of self-awareness, etc.) correlate opportunity to adjudicate other aspects of the Teresa mainly to a legal decision about the end-of-life of those Schiavo case, Florida’s Supreme Court bypassed the 2nd patients. In addition, the evolutions of life decisions in District Court of Appeal and assumed jurisdiction over time were studied, an analysis that could be useful for the the “Terri’s Law” appeal. Te U.S. Supreme Court later future judgment and ethical debates on DOC. paved the way for the third removal of Teresa’s feeding Much has been written about the challenges of sur- tube. TMS died in a hospice in Pinellas Park on March rogate decision-making for patients in DOC, but these 31, 2005.