In discussing access to health care, Brody and Engelhard question, “To what extent and at what cost ought a society attempt to provide equal health care for all?” (296). “Does the pursuit of such a goal violate rights to property and free association?” (Brody & Engelhard, 297). There are various cases, in addition to the scenarios Brody and Engelhard mention, that illustrate the inequality of health care and bring notions of justice into question. These cases exemplify the challenges in providing affordable and accessible health care to all citizens. In considering the accessibility, affordability, and quality of medical services, my Medical Sociology class discussed how health care falls short of fulfilling all three dimensions simultaneously. There is often a give and take in structuring health care to provide “the greatest good for the greatest number”, but this does not morally justify the disparity facing individuals. Equitably providing accessible, affordable, and quality medical services promotes nonmaleficence and beneficence. However, autonomy can be viewed in conflict with health policy. Health care is viewed as a privilege in the eyes of many, but in regards to morality, adequate health care should be viewed as a right without infringing upon personal liberties.

Beauchamp and Childress discuss how the principle of justice is engaged in the distribution of health policy. The principle of justice is more closely linked with legality and freedom than the other principles we have discussed in class. Beauchamp and Childress define distributive justice as referring to “fair, equitable, and appropriate distribution of benefits and burdens determined by norms that structure the terms of social cooperation” (Beauchamp & Childress, 250). This definition is somewhat ambiguous because it does not clearly articulate the issue of how justice ought to be fairly and appropriately distributed. Beauchamp and Childress further their discussion of justice by distinguishing between traditional and recent theories of justice. In analyzing these theories and how they apply to the cases posed by Brody and Engelhard, I noticed strengths and weakness in each theory. I will focus my attention towards analyzing the traditional theories of justice.

Utilitarian theories maximize welfare and assert that, “justice is the name for the paramount and most stringent forms of obligation set by the principle of utility” (Beauchamp & Childress, 254). The theory further articulates that, “human rights and principles of obligation have no other basis than utility maximization” and rights have a “tenuous foundation when they rest on the overall utility maximization” (Beauchamp & Childress, 254). I argue that by focusing on society as a whole, this theory neglects to address the individuality and uniqueness of autonomous humans; human beings are not cogs in a machine. Libertarian theories claim that, “any distribution of goods, including public health measures and health care, is just and justified if and only if individuals in the relevant community freely choose it” so long as they do not violate the rights of others (Beauchamp & Childress, 256). This theory does not view health care as a right, which in turn deprives some individuals of receiving adequate medical attention. Egalitarian theories advocate that, “the allocation of health care resources…should be structured to ensure justice through fair equality of opportunity” (Beauchamp and Childress, 257). This theory stresses the notion that, “each member of society, irrespective of wealth or position, would have equal access to an adequate, although not maximal, level of health care” (Beauchamp and Childress, 257). Is it better to provide adequate health care to all citizens or maximal health care to a select few? The provision of accessible, adequate health care for all citizens promotes the principle of nonmaleficence, however, individuals should have the opportunity to exercise liberty in obtaining a maximum level of care. Beauchamp and Childress address the communitarian policy of organ removal when discussing the communitarian theory. I do not think that individuals have an obligation to donate organs for the good of society even if the removal of cadaveric organs comes at no cost to the patient. An absence of an objection does not elicit or justify action. Organ donation promotes the principle of beneficence, but it does not necessitate the routine removal of organs since informed consent was not obtained. An action that promotes a good in society is not always best for the individual; the common good does not always justify erosion of individual rights.

Works Cited

Beauchamp, T. L., and James F. Childress. Principles of Biomedical Ethics. New York:

Oxford UP, 2009. Print.

Beauchamp and Childress discuss moral issues that arise when banking samples for research. They discuss the case of the Havasupai Indians, which is also addressed by Thomas, Waluchow, and Gedge in case 9.1 in Well And Good (290-292). In the case of the Diabetes research conducted with the Havasupai Indians, miscommunication surrounding informed consent created a platform in which morality was clouded. In Well And Good, the authors raise the question of whether “Aboriginal communities have the right to dictate what type of research is performed on their data and materials” (292). I argue that researchers have the obligation to promote autonomy and nonmaleficence when encountering any community of competent individuals. Informed consent, however, cannot be gained without sufficient understanding. All participants involved in research should be informed of the extent to which their biological samples will be utilized. In cases such as this, if ambiguity exists concerning the understanding of the participants and their level of informed consent, researchers may be prompted to ask participants to verbally restate the study’s aims.

The case of the Havasupai Indians is not a matter of deception or intentional nondisclosure in order to gain information that would otherwise be biased. This is an example of exploitation of a group of individuals who are unable to fully grasp what they were consenting to, as a result of a language barrier and lack of definitive study parameters. The researchers neglected to fully inform the Havasupai Indians of the study’s intentions. Deception was not employed, but that does not negate the fact that understanding and clarity is fundamental in promoting morally justifiable research. If the consent form had been more specific, the participants in the study, as supported by their outcry against the study, would have objected to their samples being utilized to such an extent. This notion, however, does not morally justify using the samples for further study outside of Diabetes research. “Using samples or data to achieve goals other than those initially disclosed to subjects negates even an originally valid consent process and threatens the trust between subjects and investigators” (Beauchamp & Childress, 187). The broadly stated consent form was not explicit to the point where those involved had a clear understanding of what the research would entail. In this instance, the researchers have an obligation to adequately and clearly inform the participants in order to reduce the risk of harm. The Havasupai Indians may not have thought it necessary to pressure the researchers into expounding on what they meant by using the samples to “study the causes of behavioral/medical disorders” if they had no reason to believe the study would encompass research outside of the realm of Diabetes (Beauchamp & Childress, 187).

Beauchamp and Childress articulate that the challenge in banking samples “is both not to cause harm to personal and group interests and not to violate privacy and confidentiality” (186). This case did not avoid harm to personal and group interests and arguably violated privacy and confidentiality. Beauchamp and Childress state that, “The Havasupai viewed some of this research as offensive, insulting, stigmatizing, harmful, and provocative” (187). There was no sign of immediate physical harm as a result of the study, but emotional and psychological harm was clearly evident. The results of the study had cultural, religious, and political implications. The case does not address a breach in confidentiality, but various articles were published about the Havasupai without explicit consent from the tribe members. Not only were the Havasupai emotionally harmed by the findings, the “quasi-religious significance” of the tribe’s history was publicly contradicted, further contributing to the immorality of the situation (Beauchamp & Childress, 188). Taking all aspects of this case into consideration, it is obvious that a lack of understanding was exploited in a vulnerable population and the trust in research was greatly hindered regardless of the researchers’ intention (Beauchamp & Childress, 188).

A recent study conducted by Heerman, White, and Barkin (2015) attempted to increase the strength of a participant’s informed consent through the use of supplemental visual aids and graphics based on “enhanced communication techniques from the low health-literacy and health-communication literature”. While this study dealt with pediatric research, similar tactics could be utilized to promote understanding in vulnerable adult populations.

Works Cited

Beauchamp, T. L., and James F. Childress. Principles of Biomedical Ethics. New York:

Oxford UP, 2009. Print.

Heerman, W. J., White, R. O., & Barkin, S. L. (2015). “Advancing Informed Consent For

Vulnerable Populations”. Pediatrics, 135(3), e562-e564.                 http://pediatrics.aappublications.org.proxy.library.emory.edu/content/135/3/e562.long

Thomas, J., Waluchow, W., & Gedge, E. Well and Good: A Case Study Approach to Health

            Care Ethics. 4^th ed. Broadview Press Ltd., 2014. Print. 

This case poses a challenging moral dilemma about when tragic news should be relayed to a patient. Amira Mullins is the featured patient, as she is in critical condition, is in desperate need of emergency surgery, and is questioning the state of her loved ones. The dilemma involves the issue of non-maleficence, beneficence, and autonomy. In this case, I argue that non-maleficence and beneficence temporarily outweigh autonomy. Maintaining a relationship based on trust between nurses and patients should be paramount while also promoting the health of the patient. In this instance, the concept of promoting the patient’s wellbeing and the concept of remaining honest and forthcoming are at odds. The moral dilemma is whether the nurses should immediately inform Amira of her partner’s death or wait and inform Amira when she is in a more stable condition. I argue that the nurses should wait to inform Amira of her partner’s death.

Beauchamp and Childress define nonmaleficence as “a norm of avoiding the causation of harm” (13). In this instance, Amira needs surgery in order to survive and prevent the risk of further harm. Immediately informing Amira that her partner died when she is in such a fragile state is not practicing nonmaleficence. It is never a good time to hear about the loss of a loved one, but hearing such news places further stress on Amira’s body, possibly pushes back surgery, and promotes risk of additional harm. Beneficence is defined as “a group of norms pertaining to relieving, lessening, or preventing harm and providing benefits and balancing benefits against risks and costs” (Beauchamp & Childress 13). The nurses in this case should emphasize the fact that her daughter Samantha is okay and stress that it is important for her to try and remain calm. Telling Amira that her partner died can only result in more harm.

While Amira has a right to know about her partner’s condition, the timing of such knowledge could be detrimental. It is in Amira’s best interest for the nurses to focus on Amira’s wellbeing and postpone adding additional stress. There is the possibility that Amira could die during surgery without knowing about her partner’s death, but the nurses need to do all they can to lessen the psychological strain on the body. Waiting until Amira has recovered from surgery, is stable, and in a calmer environment is the only way to ensure that Amira can physically withstand news of the death of her partner. An emergency room setting is never ideal to notify a family of the death of a loved one. The fact that the patient is in and out of consciousness also prompts whether she is stable or competent enough to be interviewed by the police. The patient’s physical wellbeing in this instance overrides all else.

This case brings the moral obligations and responsibilities of nurses into consideration. The relationship between nurses and patients is often based on trust, but it can be challenging to make sure the patient’s physical wellbeing is always at the forefront. One study conducted in Sweden by Cronqvist, Theorell, Burns, and Lützén (2004) interviewed intensive care nurses. This study contrasts the tendency to “care for” versus the tendency to “care about” patients. Cronqvist et al. found that it can be challenging to balance “moral obligations and work responsibilities” (73). This furthers the notion that nurses may feel inclined to maintain a trustworthy relationship, as indicated by their profession’s code of ethics, while also weighing the moral implications of their actions.

Works Cited:

Beauchamp, Tom L., and James F. Childress. Principles of Biomedical Ethics. New York:

Oxford UP, 2009. Print.

Cronqvist, A., Theorell, T., Burns, T., & Lützén, K. (2004). “Caring about—Caring for: Moral

obligations and work responsibilities in intensive care nursing”. Nursing Ethics, 11(1),

63-76.

The moral dilemma in this case revolves around the issue of autonomy. The Alzheimer residents at St. Mary’s suffer from mental impairment, as a result of their disease, and tend to experience “intermittent competency”. Dr. Selleck is proposing to conduct a clinical trial in order to test the efficacy of the drug Tetrahydroaminoacridine in dramatically decreasing the “progression rate of Alzheimer’s disease” (Thomas & Waluchow, 129). Participants in the trial would include individuals who maintain some control over their mental capacities and are in the middle stages of Alzheimer’s. To qualify for participation in the study, “formal, written consent” must be obtained from both the patient and their closest relative, and the healthcare staff at St. Mary’s must agree. If a patient is deemed “legally incompetent”, then consent from the patient is not necessary, but consent from a relative is required for participation (Thomas & Waluchow, 129). The director of St. Mary’s, Ann Wilson, objects to these patients participating in the clinical trial. She argues that the residents at St. Mary’s are elderly, institutionalized, and impaired, and should not be victimized through scientific examination (Thomas & Waluchow, 129-130). The proposed clinical trial cannot access a large enough sample size without the assistance of St. Mary’s residents. The dilemma is whether a resident at St. Mary’s Nursing Home, who meets the appropriate qualifications, should be allowed to participate in the clinical trial or precluded from participating for the reasons stated by Wilson. While objections from a healthcare staff member at St. Mary’s may prevent residents from participating in the clinical trial, I argue that Wilson is obstructing the notion of a resident’s autonomy by denying the resident and their family the opportunity to decide to engage in a trial that could be beneficial in reducing the progression of Alzheimer’s.

Beauchamp and Childress (2013) define respect for autonomy as a moral principle involving “a norm of respecting and supporting autonomous decisions” (13). Patients suffering from Alzheimer’s disease may be only intermittently competent, but withholding participation of such patients from clinical trials on grounds of autonomy prevents future progression in combating this tragic disease. The patients fulfilling the criteria for this trial still maintain some mental capacities, and denying such patients the liberty to consent to participate in the trial is not respecting the autonomy of these individuals. A close relative may grant consent for the patient if they are legally incompetent. The residents at St. Mary’s who are eligible to participate in the trial should be granted the opportunity to express autonomy and such autonomy should be supported.

The director at St. Mary’s may express her concern for the Alzheimer patient’s wellbeing, but denying them the opportunity to receive a drug that has promising effects in helping to combat the progression of their chronic disease is further reducing what little autonomy they have left. Participation in the trial is not proposed to have any negative effects on the participants and has been cleared by multiple Research Ethics Boards. Participation in the trial will either benefit participants or leave them to carry out the projected course of the disease. A drug for Alzheimer’s can only truly be tested by trials involving individuals with Alzheimer’s and with Alzheimer’s disease comes questions of competency. If the patient and a close family member consent to the trial, participation should not be denied. Preventing this clinical trial not only affects the participants in the trial, but also impedes possible advances in treatment for other individuals with Alzheimer’s.

A study was conducted by Kim et al. (2001) to determine the competency of individuals with Alzheimer’s in giving informed consent. Results of the study address the controversy in gaining consent from such individuals. More information regarding the study can be found through the following link: http://ajp.psychiatryonline.org.proxy.library.emory.edu/doi/full/10.1176/appi.ajp.158.5.712

Works Cited

Beauchamp, Tom L., and James F. Childress. Principles of Biomedical Ethics. New York:

Oxford UP, 2009. Print.

Thomas, John and Wilfrid Waluchow. Well and Good: A Case Study Approach to Biomedical

         Ethics. 3^rd ed. Broadview Press Ltd., n.d. Print.