Case 3.1 Research Involving Alzheimer’s Patients

Bioethics post #1

Dilemma: Dr. Sandra Selleck was conducting a research study on the effects of an Alzheimer’s drug called THA, which has the potential to slow the progression of Alzheimer’s disease. In search of participants in her study, Dr. Selleck reached out to a large regional nursing home St. Mary’s. She knew the sample would include many patients eligible for her study and wanted the opportunity to visit the home to interview patients for the study. Dr. Selleck discussed the inclusion criteria of the study with St. Mary’s director Ann Wilson, which included patient consent, consent from the patient’s closest relative, and no objections from the care staff at St. Mary’s. Dr. Selleck stressed the importance of competency of the patients in terms of enrollment in her study. After hearing this proposal, Ann decided she didn’t want any of the individuals at St. Mary’s to be enrolled in the study. She felt as though the study was exploiting elderly people and treating the patients as guinea pigs. Dr. Selleck was surprised at this response since her study had been reviewed by many ethics boards and was given considerable endorsement. Was Ann right to turn down Dr. Selleck’s request? Is Dr. Selleck’s study exploiting a vulnerable elderly population?

Discussion: I think there are many important questions at play here. For one I think the concept of patient autonomy and competency in Alzheimer’s populations is a difficult situation. Alzheimer’s disease is a progressive disease that causes a decline in memory and other mental faculties. A patient is not always lucid and therefore can’t always be deemed mentally competent. This makes it difficult to decide whether a patient has autonomy in something such as a medical trial. This then brings into effect the importance of the patient’s closest relative, clinical staff at St. Mary’s, and any doctors that may be treating the patient. Alzheimer’s populations are especially vulnerable groups but should they be given the chance to participate in a potentially lifesaving trial? How can their competency be judged? I believe to a degree that enrolling elderly Alzheimer’s patients in a clinical trial based on competency has some level of exploitation but this must be weighed with the notion of ‘do no harm’. If there is a potential drug on the market that could help a patient live for a couple more years or save the lives of future victims, then the line blurs a bit. The question is whether Ann is protecting the patients or keeping them from a lifesaving drug. This also brings up the question of whether this decision is rightfully Ann’s to make for the entire population of St. Mary’s. A decision such as this should be made by the patients at the home, the close relatives to those patients, as well as the doctors closely involved in the cases of these patients. As much as competency can be questioned, it is still the patients and their governing body’s decision about whether to participate in a situation such as this. The patients have a right to be informed on the study and then make the decision for themselves about whether to participate. These patients deserve a voice and Ann is taking that away from them. A balance has to be reached between respecting patient autonomy and nonmaleficence. These individuals deserve a discussion in their own treatment while at the same time having a governing body that is accounting for the vulnerability of Alzheimer’s patients. This brings into question whether Ann is really protecting them by not allowing them to participate in this study.

Works Cited:

Beauchamp, Tom L., and James F. Childress. Principles of Biomedical Ethics. New York, NY: Oxford University Press, 2001.
Mayo Clinic Staff Print. “Alzheimer’s disease.” Overview – Alzheimer’s disease – Mayo Clinic. N.p., 22 Dec. 2015. Web. 21 Jan. 2017.

Thomas, John E., and Wilfrid J. Waluchow. Well and Good: Case Studies in Biomedical Ethics. Ontario: Broadview Press, 1987.

2 thoughts on “Case 3.1 Research Involving Alzheimer’s Patients

  1. Hello Emma.
    Great post! I think that you bring up great points about considering patient competency and autonomy. I agree that it is difficult to determine a patient’s competency especially in the case of an Alzheimer’s patient. Their competency can fade in and out making it difficult to determine the validity and honesty of their consent. I think that this brings up the issue of moral status and how to determine the level of moral status a person has. An Alzheimer’s patient is still a person which is a sufficient characteristic to qualify them to have moral status. However, because their mental state is somewhat compromised in most cases, I do agree that it would be helpful and important to consult the family in a case like this. I do not think that Ann should be able to make this unanimous decision for everyone. Often, surrogate decision makers are used in cases such as these. The surrogate decision maker usually has a close relationship with the patient and may have a conversation with the patient about participation in research to determine the patient’s wishes (Howe).

    Howe, Edmund. “Informed Consent, Participation in Research, and the Alzheimer’s Patient.” PubMed Central (PMC), http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3398682/.

  2. Hi Emma!

    Thank you for your post regarding the important and interesting points in the role of a patient’s autonomy and competency in making decisions regarding their health. While reading this case for the first time, my thoughts focused more on the role of Ann Wilson, the director of St. Mary’s, and her unilateral decision than on the moral right or wrong done by allowing the research or not. When she declined to allow residents’ participation in the research, I initially agreed that she had the ability to act in accordance with what she believed is best for the nursing home. After further consideration, I am interested if Ms. Wilson had the appropriate realm of authority to decline her clients this opportunity. After examining various roles of a nursing home director (Utica College), I discovered that a director of a nursing home’s primary responsibility is to provide patients with the best care possible. Decisions concerning research may not lie in this category of duty, but I believe that one of the main issues in this case was lack of option between patients and the administration. A director of a nursing home has the responsibility to communicate with patients and clients, and information from the text of the case indicates that Ms. Wilson neglected to do so.

    Ms. Wilson also spoke on behalf of the entire nursing home instead of regarding her clients as unique individuals. Competency and vulnerability may vary among patients in this particular home, and Ms. Wilson did not take this into account when making this decision. In retrospect, I believe that the best course of action for Ms. Wilson when presented with this opportunity would be to communicate with patients and family the option for research, and proceed from there with their wishes and proper protocol. This particular case is an example of a foggy line between the administration of an institution and its clients, even if Ms. Wilson believed that her opinion was the right call.

    -Elisabeth Crusey

    Utica College. “Roles and Responsibilities of a Nursing Home Administrator.” Utica College. Utica College, 07 Sept. 2016. Web. 29 Jan. 2017. .

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