End-of-life care refers to the provision of care to patients with incurable terminal illnesses and patients who are in a permanent vegetative state, and that type of care is one of the most commonly debated ethical issues in contemporary health care for two reasons. First, because of the development and advancement of medical techniques and technologies, physicians and nurses are now able to prolong the patients’ lives, but those interventions do not always improve the patients’ quality of life or maintain their human dignity (Cherry & Jacob, 2016). Second, the human population is aging, so the prevalence of terminal illnesses is increasing along with the costs of end-of-life care. According to Cherry and Jacob (2016), that situation raises an important ethical dilemma because health care institutions that are spending resources on treating progressive, incurable conditions. Therefore, the principle of social justice is at stake because it is possible to argue that the allocation of resources is not fair if they are allocated for the treatment of individuals who have no chance of reasonable recovery rather than improving the quality of life among other community members (Butts & Rich, 2013).
Although some incurable conditions can be controlled using therapies to slow down their progression, the degree of damage sustained by the nervous system in some cases is too severe and beyond recovery. Providing life-sustainment therapy to patients in a vegetative state is an example of end-of-life care that maintains their bodies’ biological processes, but the patients in that condition are not capable of any form of physical activity, advanced cognition, or social interaction with family and friends. They no longer have the ability to perform self-determined actions, which includes providing voluntary consent to treatment, so their situation creates an emotional dilemma for health care providers, as well as the patients’ families and bioethics policy makers. At some point in end-of-life care, when patients are no longer capable of communicating their wishes to others, health care providers must decide about the patients’ future treatment in collaboration with the patients’ family members and in accordance with professional ethical principles and decision-making models.
The purpose of this discussion is to analyze how ethical values and the decision-making models inform the decisions of health care providers in end-of-life scenarios when the patients are no longer able to make independent choices. The main topics that will be addressed include the provision of end-of-life care to patients in a permanent vegetation state, the provision of end-of-life care to patients with severe neurological damage, and the concept of dying with dignity in end-of-life care. It is important to note that the scope of this discussion will focus only on patients who require life-sustaining therapy to maintain a persistent state of vegetation and patients who require life-sustaining therapy because of severe deficits in neurological functions. Physician-assisted suicide in end-of-life care for patients who still have autonomy and are able to provide informed consent will not be discussed.
Background
End-of-life care in bioethics is a significant ethical issue because the concept of death has not been redefined adequately to accommodate the latest advancements in the field of medicine, so the concepts of biological death and cognitive death are still being discussed (Cherry & Jacob, 2016). Although the concept of a biological death, which refers to the cessation of physiological activity in the body, is clear and straightforward, the topics of brain death and the maintenance of a permanent vegetative state is complex and requires further examination. The term “brain death” first appeared in bioethics discourse during the 1970s, and it was conceptualized as either an irreversible loss of all brain functions from the functional perspective or a condition of severe widespread brain damage from the neuropathologic perspective (Ladanyi, 1984). Consciousness depends on the state and functionality of neurological structures, so it is possible to determine the time of brain death based on the moment when a person loses sense of self-awareness (Ladanyi, 1984). However, the exact criteria for identifying those cases so that the decision to limit life-sustaining therapy are not yet clearly defined.
Recent guidelines suggest that a patient has no “realistic chance” of regaining consciousness if the state of vegetation persists for at least 12 months after a traumatic neurological injury or at least 3 months after a non-traumatic injury (Bender, Jox, Grill, Straube, & Lulé, 2015, p. 239). Health care providers can and should initiate a discussion of the patients’ condition in the early phases of treatment, preferably when the patients are still able to communicate their beliefs regarding life-sustaining therapy (Guo & Jacelon, 2014). However, in cases when patients do not communicate their beliefs regarding life-sustaining therapy, there is no method for determining an objective course of action in care delivery. According to Bender et al. (2015), the highest rate of accurate predictions (80%) was observed with the N400 analysis of patients with disorders that affect consciousness, but based on the rate of inaccurate predictions (20%), it is not yet possible to recommend the use of that technology in clinical practice. Therefore, health care providers and patients’ relatives need to resolve the ethical dilemma of limiting or continuing life-sustaining therapy in those cases.
Position Statement
This paper argues that it is necessary to perform a situation assessment procedure on a case-by-case basis to determine how end-of-life care should be provided, and the limitation of life-sustaining treatment is supported if that is consistent with the wishes of the patients or their families. The situation assessment procedure can be conducted on a case-by-case basis by multidisciplinary teams in order to ensure that an objective and justified decision has been reached. Physicians, nurses, and other members of interdisciplinary teams providing end-of-life care are ethically obligated to provide or terminate end-of-life care in compliance with the requests made by the patients or their relatives, but health care providers are not allowed to interfere with the patients beliefs or promote end of life because those actions would be considered unethical.
Supporting Values
In the first edition of Principles of Biomedical Ethics, which was published in 1979, the four bioethical principles (i.e., autonomy, nonmaleficence, beneficence, and social justice) for health care professionals were introduced (Butts & Rich, 2013). A similar set of ethical values has been adopted by the American Association of Colleges of Nursing, and those values include altruism, autonomy, human dignity, integrity, and social justice (Cherry & Jacob, 2016). Each of those values supports the position statement made regarding the ethical issues associated with end-of-life care.
Altruism. The principle of altruism in nursing ethics is defined as the “concern for the welfare of others” (Cherry & Jacob, 2016, p. 169). In the context of end-of-life care, the welfare of the patient remains the biggest challenge for health care providers because there is no clear indication for further action if the patients do not leave written or oral instructions regarding. If the patient is no longer capable of communicating personal wishes, the family must be involved in the decision-making process because their welfare will also depend on the health care providers’ actions (Dening, Jones, & Sampson, 2013). Therefore, the ethical decision in end-of-life care has to be defined on a case-by-case basis as the welfare needs of the patients and their relatives will be different.
Autonomy. The definition of autonomy is the ability to make independent decisions and take independent actions, that is to exercise the right to freedom (Cherry & Jacob, 2016). According to Butts and Rich (2013), “being willing and able to say no is part of exercising one’s autonomy” (p. 35). In order to uphold the principle of autonomy, health care providers must implement advanced care planning or similar interventions aimed at clarifying the patient (Dening et al., 2013). It would be against the principle of autonomy for health care providers to make a decision regarding life-sustaining support instead of the patients, so understanding the patients’ positions and wishes is essential for making an ethical decision consistent with the principle of autonomy.
Beneficence and nonmaleficence. Beneficence refers to the act of doing good, whereas nonmaleficence refers to the act of restraining from doing harm. However, beneficial and harmful actions in health care are not always evident, especially in end-of-life care (Cherry & Jacob, 2016). For example, resuscitating an 80-year-old patient may appear to be a good action from the care provider’s perspective, but the action could be harmful to the patient’s well-being or dignity if the patient is left with permanent neurological impairment and is kept on life-sustaining therapy for several months. In order to understand beneficence and nonmaleficence in end-of-life care, the patients’ beliefs and wishes must be taken into consideration for every treatment plan.
Human dignity. The concept of dignity in end-of-life care has been associated with the following themes: human rights, autonomy, independence, alleviation of symptoms, respect, being self, meaningful relationships, dignified treatment, satisfaction with existence, privacy, and suitable environment (Guo & Jacelon, 2014). Guo and Jacelon (2014) also found that the concept of dignity is dependent on cultural and demographic factors. Therefore, based on the principle of human dignity, health care providers must treat the patients’ symptoms and improve their quality of life as much as possible, but at the same time, they must respect the patients’ wishes, independence, and autonomy if they refuse life-sustaining treatment. The fact that the concept of dignity depends on social factors suggests that decision-making regarding end-of-life care cannot be standardized and need to be reached on a case-by-case basis to ensure that the actions are consistent with the values and beliefs of people based on their individual traits and social backgrounds.
Integrity. Integrity refers to consistency in adherence to a professional code of ethics (Cherry & Jacob, 2016). For example, nurses in the United States should adhere to the code of ethics developed by the American Nurses Association (ANA, 2015), which states that in palliative care, “the nurse should provide interventions to relieve pain and other symptoms in the dying patient consistent with palliative care practice standards and may not act with the sole intent to end life” (p. 3). Nurses can and should communicate with patients to discuss important end-of-life questions, including the patients’ positions on life-sustaining treatments, and the code of ethics does not prohibit nurses in withdrawing life-sustaining therapies as long as the final decision was made by the patient. Therefore, the ethical obligation of nurses, as well as other health care professionals, is to support the patients’ final decisions regarding end-of-life care even if they do not personally agree with their decisions.
Social justice. There are numerous ways to interpret the ethical principle of social justice, which is defined as “acting in accordance with fair treatment regardless of economic status, race, ethnicity, age, citizenship, disability, or sexual orientation” (Cherry & Jacob, 2016, p. 169). From the utilitarian perspective, which emphasizes taking actions with the greatest possible good outcomes or the least possible negative outcomes, allocating resources in health care for treating patients who are no longer able to recover would be considered unethical. If resources are used to attend to cases that will end in negative outcomes, those same resources will not be used to attempt to achieve various good outcomes. The communitarian theory of social justice in health care would also consider the allocation of resources unethical if it benefits an individual instead of the community (Butts & Rich, 2013). However, it is also important to consider that fair treatment also means that all patients have the right to autonomy and dignity regardless of their demographics or other factors, so the principle of social justice requires health care providers to value the beliefs and wishes of all patients equally when planning treatments in end-of-life care.
Ethical Decision-Making Model
According to Butts and Rich (2013), the application of the four bioethical principles in nursing practice is referred to as principlism, and it does not involve using a theory or a formal decision-making model. However, even if health care providers are guided by the essential ethical principles and values, the decision-making is a collaborative effort of clinical and non-clinical parties involved in the end-of-life care, so a systematic decision-making process must be applied before reaching the final decision. The situation assessment procedure is a simple and convenient process for analyzing the ethical implications of certain decisions, and it is conducted in the following steps: (a) identification of the ethical problem, (b) analysis of possible alternatives, (c) selection of the most appropriate alternative, and (d) justification of the selection (Cherry & Jacob, 2016). The ethical question in end-of-life care explored in this discussion is: “How to determine if it is ethical to withhold treatment or terminate life-sustaining therapy?”
If a patient suffers from extensive neurological damage and lacks the ability to make voluntary decisions, health care providers have to choose between continuing with long-term life-sustaining treatment or withholding the treatment. A survey of German and Canadian physicians found that the majority of them, 64% and 80% respectively, supported the withdrawal of life-sustaining treatment in certain circumstances (Kuehlmeyer et al., 2014). Extremely strong support for the limitation of life-sustaining treatment was reported for cases in which the patients opposed life-sustaining support in their will (89%), the patients suffered from an incurable, fatal disease (69%), the surrogate refused consent to life-sustaining treatment (55%), the patient had no chance of consciousness recovery (60%), and cases in which the patient showed no improvement in self-awareness over the course of one year (47%). Most respondents agreed that the patients’ wishes are the most important factor in deciding whether life-sustaining treatment should be supported, so advanced care planning needs to be used to avoid ethical dilemmas during later stages of treatment.
In cases when the patients are not able to provide informed consent and their wishes remain unknown, the decisions has to be discussed with the patient’s family. Guo and Jacelon (2014) noted that the concept of dignity depends on demographic and cultural factors, so health care practitioners must communicate effectively with the patient and/or family members to determine the appropriate course of action in end-of-life care. The main ethical challenge in that type of scenario is the fact that the relatives’ decisions may override the wishes of the patients (Dening et al., 2013). However, as the well-being of the patients’ family members is also at stake, it would be unethical to exclude them from the decision-making process, so their input must be valued in order to justify the proposed decision.
Finally, there may be cases in which the patients without relatives or appropriate surrogates did not communicate their wishes regarding life-sustaining treatment. The most appropriate course of action in that scenario is to follow the recommended guidelines from empirical evidence to diagnose persistent vegetative state and decide to remove the patient from life support only when recovery is no longer (Bender et al., 2015). That decision would be considered ethical considering the circumstances because spending resources on treating patients who have no realistic chances of recovery denies those resources from the rest of the community. At the same time, the patient is given a fair chance to recover within a reasonable time period, which has been established in empirical sources of evidence.
Summary
End-of-life care cannot be planned using a specific ethical decision-making framework for all cases. A flexible model such as the situation assessment procedure should be used instead in order to uphold ethical principles such as autonomy, which states that patients have the right to accept or reject life-sustaining treatment for as long as they can provide informed consent. Advance care planning, Dignity Therapy, and similar interventions should be initiated in the early phases of treatment while the patients are still capable of making independent decisions. The relatives or surrogates must be consulted regarding life-sustaining therapy when the patients are not able to provide informed consent anymore. If the patients’ wishes remain unknown, input from relatives or surrogates may bring up important information that can be used to determine the most probable positions of the patients regarding end-of-life care. In cases when the patients do not have surrogates or relatives that can participate in the decision-making process, patients should be given adequate time to recover based on the latest guidelines, which suggest that persistent vegetative state can be diagnosed after 12 and 3 months for traumatic and non-traumatic neurological damage respectively. However, if the patients show no signs of improvement during that time, the principle of social justice indicates that reallocating resources is necessary to ensure fair access to health care resources to the entire community.
References
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