Ethical Issues in the Case Management of a Client with Alzheimer’s Disease
Andrea Vera-Zambrano, RN
Case Management: Role and Process
Section 8536
Professor Kathleen Falk
November 28th, 2012
One important consideration that nurses must take into account when providing care is to ensure that their practice is led by ethical principles. According to Thornton (2011), the objective of ethical nursing care is to serve clients in a safe and compassionate manner while focusing on the promotion of their health and the respect of their dignity and decisions (p. 10). These standards of practice should be applied with special emphasis when caring for clients with neurological disorders such as Alzheimer’s disease; mainly because their capacity to make informed decisions may be very limited. Being that I work in a long-term care facility taking care of older adults with several debilitating mental disorders, I found of particular interest to research about ethical dilemmas that may arise while leading the care of clients with Alzheimer’s disease. This paper will describe five ethical conflicts that a nurse case manager (NCM) may encounter along the process of managing the health of such clients. Also, it will discuss about how the knowledge of these ethical issues can impact his/her current and future practice.
Alzheimer’s disease is a brain disorder that can affect a person’s ability to recognize, remember and carry out daily activities, among other things (Mahon & Sorrell, 2008, p. 111). The effects of this condition can be devastating not only for the individual suffering from it, but for those caring for him/her, including healthcare providers. The fact of it being a chronic and terminal illness raises several ethical implications that must be accounted for (Hope, 2009, p. 548). Some of these implications include: (a) determining the client’s level of competence for informed decision-making; (b) preserving the client’s privacy and confidentiality when he/she cannot make decisions on his/her own anymore; (c) ensuring the client’s safety while balancing his/her freedom and risk; (d) accessing the right healthcare services based on their individual needs; and (e) balancing the needs of the client with those of his/her family members. Examining how these conflicts can interfere with the offering of a good quality of care is essential.
As it is applied with other illnesses, in Alzheimer’s, the principle of autonomy must be considered crucial in the ethics of decision-making. Regardless of a client’s reality and condition, he/she has the total right to actively participate from the processes and decisions concerning his/her health (Mahon & Sorrell, 2008, p. 115). The nurse case manager has the responsibility to identify and incorporate the client’s desires and preferences into the plan of care. However, the ethical dilemma takes place when, due to the disease, the client loses all his/her capacity to make rational decisions and to choose what path of care his/her treatment plan should follow. An early diagnosis can always provide with enough time to make informed decisions and get a fully understanding of what the disease and its complications imply. Moreover, knowing about the conditions early in the disease process can allow the client to make his/her wishes known, create a living will or designate a health care proxy and make other preparations (Mattsson, Brax & Zetterberg, 2010, p. 3). Unfortunately, the disease is not always diagnosed “on time”; and on many instances, the healthcare providers find the family members making important decisions for the client.
However, the major questioning surges when trying to find out the right and wrong about having the caregivers making decisions for a client who is not capable of doing it on his/her own. This type of issue can emerge when managing the care of an 85 year-old female diagnosed with Alzheimer’s at a stage when she is not able to make decisions on her own. She doesn’t have a will or a previously designated person to assume responsibility for decisions. So, thinking about her case we may wonder if any family member is ethically allowed to make choices for the client while she is mentally incompetent. We may also want to know if she would be considered to be deprived from her autonomy right by having a family member making decisions for her. Although it is important and somehow healthy to integrate trusted family into the care and decisions, the locus of decision-making must be ultimately the client himself. As stated by Mahon & Sorrell (2008), “A diagnosis of Alzheimer’s should not necessarily preclude a person from having a role in decision making, especially earlier in the disease” (p. 116). Therefore, in order to avoid this type of conflict, it is imperative that we make all efforts to interview the client when it is still possible to get a thoughtful answer from him/her.
Nevertheless, while trying to solve this dilemma, a second conflict may evolve and make us wonder if we are violating the client’s right for privacy by disclosing his/her personal and medical information with his/her family (Hope, 2009, p. 548). It is true that the Alzheimer’s client may be lacking of his/her faculties to make informed decisions and may be in so much need of support from a loved one; however, we must find a point of equilibrium where the amount and type of information we share doesn’t lead us to a breach of confidentiality. As expressed by Powell & Tahan (2010), “the case manager has an obligation-as a patient advocate- to protect the patients’ privacy as much as possible” (p. 44). By doing this, the NCM will not only ensure that he/she is practicing within the standards of care, but will also guarantee the protection of his/her clients’ dignity. Again, an important clue is to identify the desires of the client and find out who is the person he/she determines to be the most appropriate one to make decisions on behalf of his/her best interests. Once identified, the nurse must make sure to proceed accordingly as per the client’s request. The nurse manager must be proactive and ensure good communication among him/herself, the client and the designated caregiver (Mahon & Sorrell, 2008, p. 116).
In addition to the mentioned ideas, a third point of ethical conflict may develop when in an attempt to reduce risks and ensure the client’s safety, the healthcare provider end up restricting or limiting his/her freedom and autonomy (Hope, 2009, p. 549). It is not so difficult to separate from the “caring” line and make the client feel that he/she is being over watched and treated in an insensitive way. This is particularly the case in moments where the client starts to realize that he/she is losing his/her personhood and feels very vulnerable. When providing care for Alzheimer’s clients, it is absolutely necessary to assess and manage risks appropriately. However, while trying to protect the client from physical harm, the NCM must also ensure to protect the client’s well-being and autonomy (Hope, 2009, p. 549). Feeling that one is being restricted and ignored may be very depressing and may add a lot of distress to the already devastating manifestations of the disease.
With sensitivity and respect, the nurse can address issues related to the client’s safety without accidentally limiting his/her quality of life. A situation where this type of ethical dilemma may arise is when addressing “driving competency” with an Alzheimer’s male client who has been used to be independent throughout most of his life. As stated by Davis, Hendrix & Superville (2011), “in a systematic review, it was shown that drivers with Alzheimer’s disease were found to pose a significant traffic safety problem from crashes and from driving performance measurements” (p. 27). Therefore, although the case manager may find him/herself in a position of not knowing how to approach towards this situation; it is important that for safety purposes, he/she addresses it with both the client and the family.
Also, a fourth argument of ethical contradiction may exist when the NCM has to encourage the client and his/her family to make decisions about treatment. The questioning may emerge when suggestions made by the healthcare provider differ significantly from the client’s and family’s wishes. The nurse must first assess and identify the needs and goals of the client and his/her caregiver in order to select interventions or solutions that accommodate to their will (Mahon & Sorrell, 2008, p. 117). However, how does the case manager intervene when the client has lost his/her ability to participate in decision-making and has no advanced directives or a healthcare proxy to facilitate this process? How do we know, as members of the healthcare team, what is best for him/her? Basically, we need to incorporate past and present (when possible) wishes and feelings of the client when deciding what is best. By doing it, we are promoting respect for their autonomy and independence. On the other hand, many clients with advanced Alzheimer’s may also suffer from other chronic or terminal conditions (such as cancer) that may require rigorous treatments. But what if the client and the family refuse to undergo these procedures because they think that these are too much for client? Unfortunately, we cannot force the client and the family to agree about a particular treatment. Moreover, we must balance the risks and benefits of the procedure and see if it will really be beneficial for the client, considering his/her current health status. We must identify the clinical reality of the client and incorporate it when making decisions (p. 115).
Lastly, a fifth ethical issue can appear when the client’s best interests are different to the wishes of the family (Mahon & Sorrell, 2008, p. 115). Because of the implications that this condition has, it is very important that the case manager incorporates the family into the care from the moment of diagnosis and throughout the whole disease process. In fact, in many times, it is the family the only source of information that the provider may have to obtain details about the client and his/her life. They spend most of their time and energy taking care of the client and ensuring that his/her needs are satisfied. It is very rare to have a case where the family doesn’t want the best for the client; however, conflicts may emerge when what they want does not relate to the client’s desires. It may be because their understanding about a particular treatment or protocol may be incomplete or mistaken; or simply because they may have feelings of ambivalence towards certain subjects such as institutionalizing the client or offering him/her palliative care (Thornton, 2011, p. 12). In any case, the role of the case manager is to educate them and assess if those who are making the decisions are really capable of representing the client. Also, the healthcare providers must always keep in mind that they are not obligated to implement the wishes of the family if they are not in support of the client’s best interest (Mahon & Sorrell, 2008, p. 115).
Caring for a client with a disease such as Alzheimer’s may be very challenging. There are several considerations to take into account and there is really no right or wrong answer to many questions a healthcare provider may have. As mentioned above, it is imperative that the case manager base his/her practice following ethical principles. Through the devastating effects of this disease, a client may lose his/her ability to communicate, recognize and make informed decisions. This is, indeed, what makes very difficult for a healthcare professional to lead a habitual type of care with an Alzheimer’s client. Here, it is difficult to ask the client about preferable options, because he/she may not be mentally competent to make decisions on his/her own. In such case, a family member may have to make the decision, leading us to disrespect the client’s autonomy. It may be also difficult to respect the client’s privacy when is it essential, as part of the care, to discuss options with the family members. Moreover, it is also complicated to avoid limiting the client’s independence when trying to stop him/her from doing many activities for fear that he/she may get hurt. Finally, it is challenging to figure out what actions to take when there are disagreements between the client and the family. The focus of care should not be placed on finding the best intervention but on assessing all aspects of the client that can help us identify what type of care may accommodate to his/her wishes the most.
I find it very important that a case manager recognizes that he/she must take ethical considerations into account when practicing. Every aspect of healthcare may raise its own ethical dilemmas regardless on the client’s particular situation or condition. Ensuring the client’s safety and comfort, establishing good communication techniques with the client and involving his/her family members for support are all pivotal when trying to provide the best quality of care. If the NCM disregards the client’s ethics and fails to identify his/her wishes and concerns; she/he will end up providing an insensitive care that focuses more on his/her needs than on the ones of the client. It is most likely that whatever plan of care or intervention that the manager implements will be unsuccessful and disruptive of the client’s autonomy by not integrating him/her into the decision-making process. Therefore, I think that nurses should utilize techniques that integrate existing ethical issues at all time while providing care; especially now with the changes occurring in healthcare with the implementation of the Affordable Health Care Act. With this healthcare reform more people will be qualified to receive insurance and the demands for efficient quality of care will be high. So, considering all aspects that can help improve the services offered should be of priority.
References
Affordable health care for America act. (n.d.). Retrieved from            http://en.wikipedia.org/wiki/Affordable_Health_Care_for_America_Act
Davis, N. J., Hendrix, C. C., & Superville, J. G. (2011). Supportive approaches for Alzheimer     disease. Nurse Practitioner journal, 36(8), 22-30.
Hope, T. (2009). Ethical dilemmas in the care of people with dementia. British journal of  community nursing, 14(12), 548-550.
Mahon, M. M., & Sorrell, J. M. (2008). Palliative care for people with Alzheimer’s disease.          Nursing philosophy, 9(2), 110-120.
Mattsson, N., Brax, D., & Zetterberg, H. (2010). To know or not to know: Ethical issues related  to early diagnosis of Alzheimer’s disease. International journal of Alzheimer’s disease,           2010, 1-4.
Powell, S. K., & Tahan, H. A. (2010). Case management: A practical guide for education and      practice. (3rd ed., p. 44). Philadelphia, PA: Lippincott Williams & Wilkins.
Thornton, L. (2011). Person-centred dementia care: An essential component of ethical nursing     care. Canadian Nursing Home, 22(3), 10-14.
