In the case study “Research Involving Alzheimer’s Patients,” St. Mary’s Nursing Home Director Ann Wilson rejects Dr. Sandra Selleck’s request for subjects for her clinical trial on a new Alzheimer’s drug. Ann quickly jumped to the conclusion that she would not permit a clinical trial that uses her elderly patients as “guinea pigs,” “exploits” her patients, could increase their vulnerability (Thomas 116). While I can sympathize with Ann’s quick snap decision, barring her patients from even being considered for a study, and not allowing them to use their personal autonomy or freedom to decision making could potentially cause more harm than the study itself.

According to the Centers for Disease Control, over 70 million American citizens will be considered elderly by 2030—a growth that is unprecedented in history (http://www.cdc.gov/aging/data/stateofaging.htm). This closely relates to Alzheimer’s because the symptoms of the disease first appear after age 60 and the risk increases with age, the CDC says. Current CDC statistics state that the number of people with the disease doubles every five years after age 65, and this number is projected to rise to 14 million—a three-times increase—by 2050 (CDC, http://www.cdc.gov/aging/aginginfo/alzheimers.htm). These statistics are important to highlight the ever-increasing need for new drugs and remedies to cure or alleviate Alzheimer’s. Dr. Selleck’s study has been approved by her Hospital Research Ethics Board, so it has been cleared ethically and structurally.

The dilemma in this case is the debate of whether elderly patients, particularly those whom are potentially of lesser competency, should have the right to make their own decision to participate in the trial. In Ann’s eyes, they are vulnerable because of their condition and elderly state, and should not be made more vulnerable or taken advantage of due to their mental capacity. In Dr. Selleck’s eyes, this trial takes the necessary precautions to ensure all subjects are fully approving the trial, and is an important trial to hopefully reduce the prevalence of Alzheimer’s in the future.

The concept of institutionalism is vital to making an informed ethical decision in this case. For patients in an institution like a nursing home, they may feel pressures to conform, contribute, and please those in charge of them—particularly for the elderly due to their traditional positions in society (Thomas 118). Because of the ageist society we live in, elderly are viewed as helpless, possibly burdensome members of society. In Ann’s viewpoint, participating in the study would further exploit them and make them feel more helpless. However, removing their ability to consent for themselves reduces their autonomy—which is already limited due to their place in an institution. Ethically, the patients—old or not—have a right to make an informed decision for themselves. And while some may argue that since the patients aren’t all mentally competent, the three guidelines that Dr. Selleck states (1. Patient must provide written consent. 2. Patient’s closest relative must provide written consent. 3. Health care staff must not object), allows third party opinions to be heard (Thomas 116).

For those in institutions, keeping autonomy high is of utmost importance. For elderly in particular, having their personal freedoms stripped after living a life with them is challenging. Thus, even allowing a patient the chance to make their own decision is better than having the decision made for them.

 Works Cited

“Alzheimer’s Disease.” Centers for Disease Control and Prevention. N.p., 25 July 2014. Web. 21 Jan. 2015.

“The State of Aging and Health in America.” Centers for Disease Control and Prevention. Centers for Disease Control and Prevention, n.d. Web. 23 Jan. 2015.

Thomas, John, Wilfrid Waluchow, and Elisabeth Gedge. Well and Good. 4th ed. N.p.: Broadview, n.d. Print.

At the end of chapter 2 of Principles of Bioethics by Beauchamp and Childress, the issue of live organ donors was brought up, and a case of a prisoner who wanted to donate his one kidney to his teenage daughter was briefly mentioned (55).  I did some additional online research concerning the case of the daughter, Renada Daniel-Patterson and her father, David Patterson.

Background

Renada had been born with one malfunctioning kidney, and David, who was serving a prison sentence, was absent from the first decade or so of his daughter’s life.  However, when Renada was 13, she needed a kidney transplant, and her mother, as a diabetic, was not able to donate.  Her father contacted Renada, volunteering to donate a kidney, expressing guilt about not having been a competent and caring father (Nieves; “Inmate…”).  The transplant succeeded, but several years later, Renada began to reject the kidney David had given her.  At this time, David volunteered to give his daughter his remaining kidney.  This time, there were many ethical protests.  The procedure would put David’s life at great risk, and as a prisoner, the state would have to pay $40,000 a year for the dialysis he would need following the procedure.  Furthermore, there was no guarantee that the transplant would be successful; Renada’s body had already rejected one of her father’s kidneys, so it was possible that it would reject the other one as well.  An ethics committee discussed this case in great detail.  Some respected David’s offer and sympathized with his love for his daughter.  Others thought that it did not make sense for them to risk one life to save another.  Renada’s mother Vicki was upset that the matter was even up for discussion; David was a willing donor and Renada a willing acceptor, and to Vicki, that was all that mattered (Nieves).  Ultimately, the donation was decided against.  Renada later received a kidney from an uncle, but her body eventually rejected that kidney as well.  Renada passed away shortly before her 25^th birthday (Lagos).

The Dilemma

The ethics committee in this case are faced with two options: accept David’s offer or reject it.  The moral principles at play here include respect for autonomy, nonmaleficence, and beneficence (Beauchamp and Childress 13).  Beauchamp and Childress argue that “encouraging prospective living donors are ethically acceptable as long as they do not turn into undue influence or coercion” (Beauchamp and Childress 55).  David had not been part of his daughter’s life throughout her childhood, and he had never been coerced into giving his daughter a kidney (“Inmate…”).  Rather, he made the choice on his own and took the initiative to contact Renata and offer her the first kidney and later, the second.  However, the issue of nonmaleficence also arises.  If the physicians were to perform the procedure, they would be directly responsible for causing harm towards David; they would be putting the life of David, who I assume to be a relatively healthy man, into danger, and the transplant might not even be able to save Renata.  Additionally, the cost of David’s dialysis following the removal of the second kidney would place a great burden on the state.  However, the procedure could also provide great benefits, the most obvious being the prolonging of Renata’s life.  Additionally, David expressed guilt for not being there for his daughter throughout her childhood, and might feel that the pain and suffering he would have to endure following the procedure is the least he can do to make up for this (“Inmate…”).  Going through with the transplant would give David the chance to further reconcile with her daughter and help ease his guilt of not having been an ideal father.

Reflections

Beauchamp and Childress consider sacrificial acts to be examples of supererogation (Beauchamp and Childress 47), and I agree that David’s desire to donate his second kidney, and even his act of donating his first kidney to be not obligatory, but heroic.  While his intentions are admirable and understandable, I feel like the ethics committee chose the right course of action by refusing the transplant.  That they were later able to find an uncle to give Renata a kidney suggests that not all possible options had been considered prior to the discussion of the case.  Even if another donor had not been found, and although David, Vicki, and Renata were all in favor of the transplant, the doctor has a duty to preserve a patient’s life, but not at the cost of a healthy life.  In this situation, I feel like the goal of nonmaleficience takes precedence over the respect of the patient’s and family’s wishes.

Works Cited

Beauchamp, Tom L., and James F. Childress. Principles of Biomedical Ethics. New York: Oxford UP, 2009. 13, 47, 55. Print.

“Inmate Donates Kidney to Daughter.” Los Angeles Times. Los Angeles Times, 13 Mar. 1996. Web. 22 Jan. 2015. <http://articles.latimes.com/1996-03-13/news/mn-46515_1_pediatric-kidney>.

Lagos, Marisa. “BAY AREA / Woman Whose Inmate Dad Donated Kidney to Her Dies / She and Her Mom, from Oakland, Had Moved to Atlanta.”SFGate.  20 Mar. 2007. Web. 22 Jan. 2015. <http://www.sfgate.com/bayarea/article/BAY-AREA-Woman-whose-inmate-dad-donated-kidney-2609092.php>.

Nieves, Evelyn. “Girl Awaits Father’s 2d Kidney, And Decision by Medical Ethicists.” The New York Times. The New York Times, 04 Dec. 1998. Web. 22 Jan. 2015. <http://www.nytimes.com/1998/12/05/us/girl-awaits-father-s-2d-kidney-and-decision-by-medical-ethicists.html>.

In nearly every occupation an individual could be involved in, moral issues are bound to arise. Whether a schoolteacher at an elementary school, or a Major League Baseball player, ethical quandaries regarding one’s character will be tested.

In this particular case, multiple moral issues are presented. The foremost, and ostensibly the most obvious dilemma, is whether or not Ashley should voice her opinion regarding the best situation for the newborn baby. In an ordinary case with a mother giving birth to her baby, the mother clearly receives full custody over caring for the infant. Alternatively, in this case, the mother has been deemed by the hospital administration to be of inadequate character and responsibility to care for the baby. Thus, the decision was made to place the baby into Children’s Aid care. There is an enormous amount of pressure on Ashley to agree with what the hospital has decided to do with the baby because Ashley is an inexperienced nurse shadowing Joan—a veteran nurse who seems to be competent in her job. Clearly the hospital expects Ashley to follow closely to Joan’s actions both while caring for patients physically, and while making ethical decisions. Contrarily, in the Code of Ethics for Nurses in the Provisions of the Code of Ethics for Nurses with Interpretive Statements, Provision 2 states, “The nurse’s primary commitment is to the patient, whether an individual, family, group, community, or population” (Page 8, Code of Ethics for Nurses). Additionally, Provision 3 from the Code of Ethics for Nurses states, “The nurse promotes, advocates for, and protects the rights, health, and safety of the patient” (Page 8, Code of Ethics for Nurses). These Provisions from the Code of Ethics for Nurses require Ashley to voice her opinion on the situation to her coworkers. On the other hand, if Ashley speaks against the actions of her employer, the hospital, she risks losing her job, and maybe even her career.

Another moral dilemma presented in this case is the decision of who should care for the baby. This is more of a question of which individual or organization is most suitable for the job. Judging by the fact that the mother, Deborah, has a long history with drug use and has been involved in the sex-trade for approximately five years, it is a tough argument to say that Deborah is prepared for motherhood. Furthermore, just two years earlier, Deborah gave birth to a child that child protective services took custody of and cares for. There is a precedent here. Since child protective services has already deemed Deborah an unsuitable guardian for her first child, the same decision of incompetence will be determined for her second child. This is because Deborah relapsed back into drug use and sex trade after having her first baby stripper from her. Additionally, the newborn child is an innocent being; the child deserves the best of possible circumstances to grow up in. Whether the best situation for the child’s upbringing is with adoption, with Deborah, or with an alternative upbringing situation, the decision must be made in which situation the child will be raised.

In regards to the first dilemma regarding Nurse Ashley’s silence, it is difficult to speak up when you are aware of the possible consequences of doing so. Still, Ashley should have voiced her concerns privately with Nurse Joan and the rest of the hospital staff making the decision. The party that should care for the child should be a reliable one. The mother cannot be relied on to care for the child. What if the mother relapses back into drug use? Who will be there to care for the baby? The only conceivable choice is to allow a reliable party (not the mother) to care for and raise the infant. I believe that the hospital has followed through with the moral action concerning the party that cares for the baby. This is the best response in this situation because, when it comes down to decision making, the most important factor to consider is the welfare of the baby.

Sources:

“Anonymous Mom: I Almost Called Child Protective Services On Myself.”Mommyish RSS. Mommyish.com, 8 Jan. 2013. Web. 21 Jan. 2015. <http://www.mommyish.com/2012/09/13/called-child-protective-services-657/>.

“Code of Ethics for Nurses With Interpretive Statements(View Only for Members and Non-Members).” Code of Ethics for Nurses With Interpretive Statements(View Only for Members and Non-Members). American Nurses Association, n.d. Web. 19 Jan. 2015. <http://www.nursingworld.org/MainMenuCategories/EthicsStandards/CodeofEthicsforNurses/Code-of-Ethics-For-Nurses.html>.

“Lincoln University.” Fort Leonard Wood Campus. Lincoln University, n.d. Web. 21 Jan. 2015. <http://www.lincolnu.edu/web/fort-leonard-wood/fort-leonard-wood>.

McEssy, Cheri. “Older Nurses Asset to Healthcare System | Berwyn.” Older Nurses Asset to Healthcare System | Berwyn. Brightstar Care, 20 Mar. 2012. Web. 21 Jan. 2015. <http://www.brightstarcare.com/berwyn/2012/03/20/older-nurses-asset-to-healthcare-system/>.

Jonah Adler

This is a case concerning the ethical considerations of research on a particular group of people. It is worth noting that there will almost always be someone objecting to any sort of research on some contrived arguments, however this case merits valid consideration. The group on question is the elderly, which is defined by the World Health Organization as those persons over 60. (http://www.who.int/healthinfo/survey/ageingdefnolder/en/) The more specific group is the elderly afflicted with Alzheimer’s and cognitive dementia. The question arises from a request to gather subjects in a drug trial from a nursing home. The director of the nursing home stalwartly refused all participation in the study over ethical concerns of exploitation. While her arguments contain some logical they are misguided. In the discussion of the case there are multiple issues raised, the first being the institutionalization of these patients and they effects that causes. Primarily there is a sense of dependence on the institution or a sense of debt. An institute for the elderly will also likely have the inevitable effect of lowering the self-worth of the occupant. This is likewise connected to the lack of a sense of purpose or contribution to society in the elderly. All of these could be considered coercive factors to provide consent for the study when they otherwise would not, which is the argument of the director.  Coercion is clearly an ethical wrongdoing, particularly in what is meant to be an impartial study as it hinders autonomy. However the determination as to whether there is an element of coercion in consent to the study is up to interpretation. The review boards of several hospitals found no problem in the sampling procedures. There is consideration made to the fact that the mental competence of these patients, but that problem is solved by the need for consent in triplicate from the patient if possible, the closest relative and the caretakers. The director seems to be acting out of an irrational paternalism towards her patients in an overprotective manner.  There is a suggested dualism in the elderly and the juvenile. The juvenile are certainly given a special set of rules. Some seem to believe that the elderly deserve a special classification in the same way, just at the other end of their life. The reason juveniles are treated differently is due to incomplete maturation, which is not something that is in play for the elderly.  With each piece of the argument in the consideration I come to the conclusion that the director was in the wrong to deny her patients the opportunity to participate in the study.  Given the common feeling of lack of contribution in the elderly, the best remedy is an opportunity to contribute. The consequences of the study would be limited compared to the gain provided by the psychological relief. This is regardless of the potential benefit provided by the study if the study is effective.  The progression of the Alzheimer’s could be slowed providing great personal benefit and benefit to other afflicted with the disease. There is little to no corruption of autonomy truly present as participation is voluntary and consent is validated by the addition of the consent of the family member.  In addition if there was it could be justifiably balanced by the potential to medically improve the conditions of these patients. This trial is not an example of maleficence towards the patients but rather beneficence.

Jake Johnson

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