Neuroethics

Treating Unconscious Patients When End-of-Life Preferences Are Not Declared

Sonia Seth


Introduction

It is only fair that all patients have their end-of-life preferences met. However, this idea becomes complex when the patient has not expressed end-of-life preferences prior to an injury and is in a state where communication is not possible. Patients in a comatose, vegetative, or minimally conscious state are often in such situations. In such cases, a lawful surrogate is required to make a decision that best reflects what the patient would have desired. However, there isn’t always an appointed health care proxy. In these cases, familial disputes often lead to the court’s involvement, thereby publicizing such cases and inspiring many social, political, and religious groups to express their respective opinions. Therefore, this has become a controversial topic in the realm of neuroethics. Terri Schiavo and Munira Abdulla are among the names of severely brain-damaged patients whose stories have raised questions about the ethical implications of treatment and end-of-life issues in patients diagnosed with disorders of consciousness.

 

Case Study One: Terri Schiavo 

Terri Schiavo was a woman who remained in a vegetative state for fifteen years [4]. The vegetative state, also known as the unresponsive wakefulness syndrome, describes the state in which a patient is unable to communicate or show signs of behavioral consciousness, but displays preserved autonomic functions, such as respiration and digestion [1]. Schiavo collapsed in 1990 due to an unknown cause and suffered brain damage after oxygen depletion, resulting in a persistent vegetative state [4]. She remained in this state until (after many court cases) her feeding tube was removed in 2005 at the age of 41 [8]. Religious individuals called this a murder, while those who advocated for the ‘‘right to die’’ said Terri should not have been tortured in such a state, and were enraged at the idea that Congress was interfering with private matters [8]. Schiavo’s husband argued that she would not want to be kept alive by means of a machine and wanted to detach the feeding tube that provided her nourishment [4]. Schiavo’s parents disagreed: she would want it this way, they claimed [4]. Courts went back and forth, but ultimately ruled in favor of Mr. Schiavo and the feeding tube was removed. This decision inevitably resulted in a stir of emotions from the general public, given that the case was so public [8]. Should Terri’s feeding tube have been removed? There were no official papers that documented her end-of-life preferences and Terri had not executed a Health Care Proxy [6]. Therefore, we don’t really know what she would have wanted [6]. The court ruled on the claims of her husband, who, as some sources point out, may not have held Terri’s best interest in mind [4]. Perhaps Terri’s feeding tube should not have been removed. Terri did not seem to be in pain or distress and had her parents by her side, fully willing to take care of her to the best of their ability. Additionally, Terri’s family had released video clips that show her interacting with her mother, hinting to underlying consciousness. Because we don’t know what Terri really wanted, she should have been given exceptional care until her ‘‘natural death’’ rather than try to guess at what she would have wanted. 
 

Case Study Two: Munira Abdulla

In 1991, Munira Abdulla was left in a state of minimal consciousness after a serious road accident at the age of 32 [5]. Abdulla was sitting in the back of the vehicle with her son, whom she cradled for protection just before the impact, leaving her with severe brain damage, and her son with bruised skin [7]. Patients in a minimally conscious state are not able to communicate their thoughts or emotions, but they show minor signs of awareness, such as “visual pursuit, orientation to pain, or nonsystematic command-following [1].” Abdulla was transferred to a London hospital where she was kept alive: she was given a feeding tube and received physiotherapy to prevent muscle weakness [7]. In June of 2018, Abdulla woke up after twenty-seven years [5]. She woke up calling her son’s name, a beautiful moment for Abdulla, her family, her caretakers, and the rest of the world [7]. Her son said, “The reason I shared her story is to tell people not to lose hope on their loved ones; don't consider them dead when they are in such a state [7]." Had Abdulla’s feeding tube been removed, Abdulla  and her son would have never lived to experience that moment. Abdulla’s son left an important message for those who know of someone in a state of minimal consciousness: don’t lose hope. For twenty-seven years, Abdulla’s son did not lose hope.  

 

Conclusion: Case Study One and Two

The juxtaposition of the two cases presented above instills a sense of doubt regarding the outcome of Terri Schiavo’s case. With the recent advancements in technology, researchers are increasingly considering the idea that patients with such disorders of consciousness may have an underlying consciousness that is not visible from an outsider’s perspective. In 2014, a team in Belgium suggested that an unseen level of consciousness may exist in some vegetative patients [4]. The study used neuroimaging techniques to find traces of consciousness in 13/41 (32%)of patients, thereby supporting the argument that there is potential recovery for these patients [3]. Because there is some chance that patients in these states may be revived, the ethical implications of removing nourishment by means of a feeding tube, or other medical instrument, are disastrous (in patients whose end-of-life preferences are not explicitly documented). Some argue that keeping patients with disorders of consciousness in their current state, where they are unable to communicate or show signs of behavioral consciousness, is a sin in itself [4]. Although it is difficult to see patients in this state, there is a clear ethical implication of killing the patient by removing a feeding tube or other mechanism by which they are kept alive. David Crippen, an associate professor at the University of Pittsburgh Medical Center, states, “The price paid for this policy is some indolent shells of humanity that may be maintained in a hopeless condition, but it also avoids the pitfalls of individuals assassinating innocents capriciously. It is the lesser of two evils [3].”  The ethics of killing the patient must be accounted for, especially in cases where the patients end-of-life preferences have not been documented. Additionally, health care professionals must not rely on the opinion of those who have not been appointed as a Health Care Proxy. It is difficult to recognize who has the patient’s best interest in mind and who does not, even taking into account friends and family members. If no Health Care Proxy has been appointed, it is best to abide by the ‘lesser of two evils’ and let the patient live. 

Figure I. Terri Schiavo and Munira Abdulla’s cases pose difficult ethical questions for neuroscientists to answer [7].

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References

[1] Bruno, Marie-Aurélie, et al. (31/10/2013). Handbook of Clinical Neurology. U.S. National Library of Medicine.www.ncbi.nlm.nih.gov/pubmed/24182379. Retrieved: 05/07/19.

[6]  Parker, Vance R. (01/01/2018). “Remembering Terry Schiavo, Why You Need a Living Will.” Vance Parker Law, PLLC.https://vparkerlaw.com/remembering-terry-schiavo/. Retrieved: 31/06/19.

[2] Buckley, Tom, et al. (06/02/2004). “Ethics Roundtable Debate: Withdrawal of Tube Feeding in a Patient with Persistent Vegetative State Where the Patient’s Wishes Are Unclear and There Is Family Dissension.” National Center for BiotechnologyInformation.www.ncbi.nlm.nih.gov/pmc/articles/PMC420027/

Retrieved:  06/04/2004.

[7] Richardson, Michael W. (13/03/19). “Neuroethics Asks the Difficult Questions.” BrainFacts.org, 13 Mar. 2019, www.brainfacts.org/neuroscience-in-society/law-economics-and-ethics/2019/neuroethics-asks-the-difficult-questions-031319.

[3] Grady, Denise. (15/04/2014). “PET Scans Offer Clues on Vegetative States.” The New York Times.www.nytimes.com/2014/04/16/health/pet-scans-found-to-clarify-vegetative-state.html?module=inline.. Retrieved: 02/07/2019.

{8] (23/04/2019).  “UAE Woman Munira Abdulla Wakes up after 27 Years in a Coma.” BBC News.www.bbc.com/news/world-middle-east-48020481. Retrieved: 04/07/19.      

4] Haberman, Clyde. (20/04/2014). “From Private Ordeal to National Fight: The Case of Terri Schiavo.” The New York Times.www.nytimes.com/2014/04/21/us/from-private-ordeal-to-national-fight-the-case-of-terri-schiavo.html. Retrieved: 03/07/19.

[9] Weijer, Charles. (26/04/2005). “A Death in the Family: Reflections on the Terri Schiavo Case.” CMAJ : Canadian Medical Association Journal = Journal De L'Association Medicale Canadienne, Canadian Medical Association.  www.ncbi.nlm.nih.gov/pmc/articles/PMC557072/

[5] Karasz, Palko. (24/04/2019). “Woman Wakes After 27 Years Unconscious.”  The New York Times.www.nytimes.com/2019/04/24/world/middleeast/woman-coma-27-years.html. Retrieved: 04/07/19.

 


    Sonia Seth

    Sonia Seth


    Sonia Seth, a current high school student, is a vocal jazz enthusiast who is intrigued by the intricacies of the human brain. She aspires to become a neurosurgeon and also wants to help design cost-effective interventions geared toward preventing the degeneration of brain health.