In this case, the right to live is addressed as Karen Ann Quinlan’s story is told. After lapsing into a permanent comatose state, 21-year-old Quinlan was declared “persistent vegetative”. Her family, who was present with her and bore witness to her worsening condition, began to express concern for Karen’s quality of life and whether she would want to live or not (Karen Ann Quinlan Memorial Foundation, 2018). They decided to fight to have her taken off of the respirator despite the controversy that this. The health care team refused to do as requested by the family and decided to take this case to court. Eventually, Karen was weaned off of the respirator and remained breathing independently for ten years. She passed in 1985 of pulmonary failure (Karen Ann Quinlan Memorial Foundation, 2018).
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While reading about Karen Ann Quinlan’s story and case, I felt compassion for the conditions that Karen and her family were battling. I also had a hard time understanding why the Quinlan family had to go through such legal difficulty in addition to enduring the grieving of their ill daughter. One would think the health care team would respect the wishes of the family. This case calls for a re-definition of life, something that I feel cannot easily be defined. It also requires one to ask themselves what they would do in a situation such as this and take into account all aspects of this case.
This case impacted me personally, but also translates into the nursing practice in two major ways; empathy and awareness. As nurses, it is important to not only listen to our patients’ and their caregivers’ concerns but seek to understand them as well. We must recognize the wishes of these caregivers and respect the rational to these decisions. This empathy plays a part in the caring response that facilitates and ensures therapeutic, patient-centered care (Doherty & Purtilo, 2016). It is also important that the nurse is aware of the legal aspect of euthanasia. The nurse, as well as the other members of the healthcare team, must be well-versed and knowledgeable of cases such as Quilan’s as well as the resulting precautions set forth in order to appropriately handle similar circumstances.
Ethical Principles
The Karen Ann Quinlan case is related to ethical principles of autonomy and paternalism. The case overall caused controversy on the preservation of one’s autonomy. Autonomy is defined as the personal right to making their own decisions in regard to health and well-being (Doherty & Purtilo, 2016). As Karen was deemed to be in a persistent vegetative state, it was difficult to decide what the healthcare team next line of treatment should be. This is because she lost the capacity to make these decisions for herself (Karen Ann Quinlan Memorial Foundation, 2018). Her parent was left to make this decision and it ended with them requesting to have the respirator discontinued. This is when the ethical principle paternalism comes into play as Karen’s healthcare team legally had to keep her on life-sustaining equipment during the time of trial despite her parents’ decision. Paternalism is defined as the healthcare professional or other individuals voluntarily assuming the role of the parent and therefore making decisions based upon his/her own judgment (Doherty & Purtilo, 2016). This is apparent in the Quinlan case as healthcare professionals, although aware of her terminal condition, acted in regard to state laws prohibiting euthanasia (Karen Ann Quinlan Memorial Foundation, 2018).
Prototypes of Ethical Problems
I interpret that this case falls under the moral distress prototype. With this type of ethical problem, there is more of a focus on the agent than the course(s) of action (Doherty & Purtilo, 2016). Under this prototype, there are two different categories. There is type A is the act of personally knowing the right actions to perform but not having the ability to do so. Type B is when the “practitioner knows that something is wrong” but cannot specially identify what is wrong (Doherty & Purtilo, 2016 p.64). Particularly this case presents the type A subcategory of moral distress. As discussed above, Karen Quinlan’s healthcare team determined that she was in an unrecoverable comatose state. But still, she remained on life-support machinery (respirator) while her case was being brought to the Supreme Court. The right action would be to discontinue the life-support machinery, but the health care team was unable to perform this action due to barriers like established laws making this case appropriately complying to the definition of type A prototype.
Ethics Committees
In 2014, the Ebola Virus Disease outbreak was identified as a “public health emergency of international concern” (Alirol et al., 2017). Upon researching this outbreak, it was identified that this case was brought to the World Health Organization Ethics Review Committee (WHO-ERC). In regard to the lack of measures established to prevent the spread of Ebola Virus, more specifically about the underdevelopment of vaccines. The WHO-ERC conducted two reviews specifically for this case; full committee and expedited reviews (Alirol et al., 2017). Full committee was utilized as the research proposals presented more than minimal risk to human subjects. It is reviewed by two primary members, presented to the panel, followed by a general discussion and finally a consensus decision (Ethics Review committee, 2016). In the expedited review, the proposal is sent to two reviewers who provide their feedback to the secretariat decision (Ethics Review committee, 2016). The proposal is then either approved or returned. After these two reviews, the WHO-ERC Panel decided that it would be appropriate, in this instance, to utilize unregistered interventions to accelerate vaccine and drug development in hopes to prevent this epidemic from spreading even further and killing many more (Alirol et al., 2017).
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The specific number of members on this review team was not able to be identified. But the team consists of members of various regions and of proportional genders that were specially selected (Ethics Review committee, 2016). Members carry expertise in clinical research, drug development, social sciences, legal affairs, as well as one lay member (Alirol et al., 2017). Each member undergoes the appropriate training in reassure ethics and confidentiality prior to receiving the position on the committee (Ethics Review committee, 2016). The ERC is not limited to one specific hospital. The desire of a case review is typically made by researchers who have developed a widespread of studies on outbreaks. They must submit a proposal to the ERC Secretariat as an online application and after passing the initial screenings, will proceed to the extensive review process which includes an initial review and one of the following review options; full committee, expedited, fast track, continuing or exemption for further review (Ethics Review committee, 2016). The time period of this review is determined on the severity of the case. In the Ebola Virus Disease case study, it took on about 18 days from the proposal submission to the WHO-ERC to get the approval (Alirol et al., 2017).
The Gold Standard
The gold standard poses the question in which we can always refer to when dealing with ethical issues or dilemmas. Which specially questions “what do human dignity and respect demand of us?” (Doherty & Purtilo, 2016, p. 18). Doherty & Purtilo present four more questions including one that is relevant to Karen Ann Quinlan’s case. Doherty & Purtilo present the question of “Do our present moral values, conduct, and character traits pass the test of further examination when measured against the gold standard?” (2016, p. 18). This question is something that each member of Karen’s healthcare team had to ask themselves. Moral values, duty, and character have to be considered. One of the major questions that need to be asked to answer this question is there an improvement to the patient life status be keeping her on life support? With Karen, it was determined that improving her original state would be impossible due to her being in a vegetative state. Then you would have to take into account its impact on her quality of life and the gold standard. Which will bring you to the conclusion that her family wishes of removing her from the respirator was deemed acceptable. Due to the presence hindering her quality of life because of the complications and discomfort the respiration system possess. Removing the device will improve her quality of life and did not further harm her during this time before her death.
References
- Alirol, E., Kuesel, A. C., Guraiib, M. M., dela Fuente-Núñez, V., Saxena, A., Gomes, M. F., & de la Fuente-Núñez, V. (2017). Ethics review of studies during public health emergencies – the experience of the WHO ethics review committee during the Ebola virus disease epidemic. BMC Medical Ethics, 181-11. doi:10.1186/s12910-017-0201-1
- Doherty, R.F. & Purtilo, R.B. (2016). Ethical dimensions in the health professions (6th ed.). St. Louis, MO: Elsevier.
- Ethics Review Committee: Review process. (2016, November 04). Retrieved from https://www.who.int/ethics/review-committee/review_process/en/
- Karen Ann Quinlan Memorial Foundation. 2018. History [Blog post] Retrieved from https://www.karenannquinlanhospice.org/about/history/.
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