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  • Ajay Macherla

Assessing Ethical Concerns in the Diagnosis and Treatment of Alzheimer’s Disease





Abstract

Alzheimer’s Disease (AD) is a neurodegenerative disease associated with severe cognitive deficits. As AD patients become more common in older adults, physicians are likely to encounter a patient with this condition sometime in his or her career. With this situation comes several ethical decisions.


The aim of this research paper is to assess ethical concerns in the diagnosis and treatment of AD and provide working solutions to take initiative on solving these problems in the clinic.


Of these ethical debates, we will focus on three primary ones in this review: diagnosis disclosure, determined effort in later stages of AD, and patient autonomy. Considering the first decision, it has been shown that many AD patients are not even aware of their diagnosis, as even disclosure can increase the chance of adverse health outcomes and psychological stress. Furthermore, many physicians are susceptible to not putting full effort in treating for a patient due to the inevitability of the patient’s fate; the mortality rate and the lack of effective treatments for AD renders it almost “hopeless” and “unnecessary” for physicians to use medical resources for a patient that is most likely going to die as opposed to using those supplies to treat someone who has a greater chance of survival. Finally, patient autonomy is an important ethical principle that is usually violated in later stages of AD, as severe cognitive deficits make it difficult for AD patients to make logical and informed health decisions. This leads physicians to make these decisions for the patient.


This review synthesizes research on these three primary ethical concerns and ultimately devises an action plan for physicians and biomedical researchers to work towards minimizing the likelihood of facing these ethical decisions.



 


Introduction

Alzheimer’s Disease (AD) is a deadly neurodegenerative disease that is common in older patients. An estimated 6.2 million Americans aged 65 or older live with AD and dementia in 2021, and 72% are 75 or older. As a result, physicians will most likely encounter a patient with AD in his or her career (Facts and Figures, n.d.).


AD is characterized as neuronal cell death in the nervous system of the body, which creates a build-up of neurofibrillary tangles and senile plaques called B-amyloid and tau. These peptides create cognitive dysfunction in the patient. Magnetic resonance imaging (MRI), computed tomography (CT), positron emission tomography (PET), and electroencephalography (EEG) scans are typically utilized to diagnose AD. Symptoms of AD include memory loss, poor judgement, social withdrawal, and speaking difficulties, among others. Although there is no cure to AD, certain medications and therapies are utilized in order to alleviate symptoms associated with the condition. However, at later stages of AD, it is difficult to avoid severe or adverse health outcomes of the disease, including death (Kumar et al., 2020).


In the diagnosis and treatment of AD, there are several ethical questions that have been raised in the medical community, creating a controversy over the ethical responsibility of physicians in intervening with AD patients. Ethical concerns of patient autonomy are evident in later stages of AD, as the patient has too many cognitive deficits in order to make logical health decisions. This inability can inappropriately give more power to the physician to make a decision on the treatment or diagnosis of AD.


Furthermore, some physicians face the choice of whether to break the news that a patient has developed AD. Due to the high mortality rate of the disease and the severe complications associated with the conditions, physicians may be compelled to withhold the diagnosis information to the patient in the effort to not cause any psychological stress. Although the intentions of the physicians are genuine and to the best interest of the patient, they raise ethical concerns of patient autonomy and deception. Patients must be debriefed with all the medical information pertaining to their diagnosis (Howe, 2006).


Moreover, at later stages of AD in patients, physicians may not feel as obligated to put effort into keeping the patient alive, as the mortality rate of the disease most likely indicates that the patient will die, and there is nothing the physicians can do to save the patient. In the effort to save medical resources, the physicians are actually violating an ethical guideline of medical practices, as clinicians must provide the utmost quality of healthcare to the patient at all times. Just because the patient will most likely die does not mean that the patient does not deserve to be treated to the best of the physician’s ability (A. Armstrong, 2013).


In this paper, an overview of AD will be presented in order to better understand the etiological and pathological origins of the condition. After that, a discussion of ethical considerations in diagnosing and treating AD will be presented, along with empirical evidence to support assertions made in the section. Finally, in the conclusions section, an appraisal on how the physicians should best tackle situations involving potential violations of ethical guidelines will be made.



 

Disease Overview

Before a discussion of the ethical considerations in diagnosing and treating AD, let us first provide an overview of the neurological condition. This disease overview will be divided into six sections: etiology, pathology, diagnosis, symptoms, treatments, and epidemiology.


Etiology:

AD is a progressive neurodegenerative condition caused by cell death in the nervous system. Normally, this death occurs in the entorhinal cortex of the hippocampus. This degeneration of neurons creates abnormal proteins such as B-amyloid and tau, that, through cell-to-cell pathways, transfer to the brain. Risk factors of AD include age, traumatic head or brain injury, cardiovascular diseases, smoking, family history of AD or dementia, and increased homocysteine levels. Homocysteine is a type of amino acid that, when in excess, can damage the lining of arteries (A. Armstrong, 2013).


Genetic factors associated with the etiology of AD include the presence of the APOE e4 allele, which has been correlated with a higher likelihood of developing AD in patients. Genetic history, as follows, is a risk factor of AD development. In fact, according to a textbook, “[h]aving a first-degree relative with Alzheimer's disease increases the risk of developing Alzheimer's disease by 10% to 30%” (Kumar et al., 2020).


Pathology:

A journal explains that there are two primary lesions, amongst others, that are associated with the neuropathology of AD: neurofibrillary tangles and senile plaques. The former includes abnormal tau, while the latter is composed of B-amyloid and specific peptides. These lesions create a loss of synaptic function which can lead to damage in cognition (Perl, 2010).


Genetically, the pathology of the disease is linked to mutations in three different genes: AAP gene on chromosome 21, Presenilin1 on chromosome 14, and Presenilin2 on chromosome 1. This can lead to an increased creation of B-amyloid and tau. It should also be noted that these genetic mutations account for approximately 5-10% of early-onset AD cases (Kumar et al., 2020).

Diagnosis:

Diagnostic tests for AD can be both quantitative and qualitative. Referring to the first idea, medical tests such as standard blood and urine tests can be leveraged to diagnose AD. Other tests include vitamin B12, folic acid, and thyroid stimulating hormone (Neugroschl & Wang, 2011).


However, neuroimaging and other qualitative tests are more frequently utilized to diagnose AD. MRI, CT, and PET scans can be used to determine whether there is neuronal cell death in specific areas of the brain. Another type of test is electroencephalography (EEG), which measures electrical activity in the brain to discover neural abnormalities.


Qualitative tests include asking the patient and his or her family questions about physical and mental health. Physicians should take note of any prescription medicines or over-the-counter medicines that the patient is using. Problem solving, memory, and puzzle tests are also sometimes administered to observe the patient's performance. A detailed review of medical and genetic history may also be necessary to accurately diagnose AD (How Is Alzheimer’s, 2017).


Symptoms:

Symptoms of AD are due to the neuronal cell death in the hippocampus and other areas of the brain, as well as the neurofibrillary tangles and senile plaques, contribute to the development and nature of these effects (Symptoms: Alzheimers, 2018; 10 Warning, 2019):

  • Extreme memory loss that interferes with daily activity

  • Inexplicable mood changes and changes in personality

  • Poor judgment and logic in situations

  • Word processing and speaking difficulties

  • Confusion with the time and place

  • Withdrawal from social activities

  • Misplacing things frequently


Treatments:

Unfortunately, there has not been a cure discovered for AD. However, there have been multiple drugs and therapies developed that aim to alleviate the symptoms associated with the disease.

For example, consider Aducanumab, which is a type of monoclonal antibody developed by Biogen Inc. that can bind to b-amyloid tangles and senile plaques in order to reduce them. In doing so, some of the cognitive deficits can be reduced and even restored. The drug was submitted for FDA approval in July of 2020 and was approved in August of 2020 (Aducanumab for Treatment, n.d.; Aducanumab: Benefits, 2020). Antidepressants and anxiolytics are also used to alleviate some of the symptoms. Examples of the former include Celexa, Prozac, and Desyrel. The latter includes Ativan and Serax (Treatments for Behavior, n.d.).


Types of therapies that have been proven to be effective in treating AD to some capacity include the following. Aromatherapy involves using essential oils on applying them on the skin or added to a bath, and it has been proven to be effective in improving cognitive function in AD patients (Jimbo et al., 2009). Furthermore, transcutaneous electrical nerve stimulation can lead to chemical changes in the brain, which can, through complex chemical processes, restore some cognitive function in the brain (Scherder & Bouma, 1999). Another type of therapy to consider is bright light therapy, which is a type of therapy that shifts normal sleeping patterns to restore circadian rhythm disorders (Bright Light, n.d.). Evidence for the effectiveness of this therapy has also produced compelling results supporting its usage (Sekiguchi et al., 2017).


Epidemiology:

An estimated 6.2 million Americans aged 65 or older live with AD and dementia in 2021, and 72% are 75 or older. The sheer pervasiveness of this disease warrants further exploration and research on the disease and the ethicality of diagnosis and treatments.


It has been determined that age has a positive correlation with the prevalence and incidence of AD per 100 inhabitants. Below is are two diagrams detailing these relationship (“Epidemiology of Alzheimer’s,” 2009):




Figure 1: Relationship between age and the prevalence of

AD per 100 inhabitants in specific countries




Figure 2: Relationship between age and the incidence of

AD per 100 inhabitants in specific countries


The increase in the number of patients with AD and dementia each year, along with the inherent severity of the disease itself, is concerning for society and the economy. According to a specific journal, an esteemed $315 billion was spent on care and medical resources for AD patients (“Epidemiology of Alzheimer’s,” 2009). As more and more patients acquire AD, the medical community will only spend more money to meet these rapid increases. For economic, societal, and epidemiological reasons, an effective treatment must be discovered for AD, and more research towards this end must be conducted in order to receive results. However, before this task is completed, we must explore the ethicality of current diagnostic tests and treatments, as we must evaluate whether our current methods are ethical and sustainable.



 

Ethical Concerns

As the number of patients with AD and dementia increase in the world, it is becoming more common for clinicians and neurologists to encounter one of these patients in their career. As such, these physicians will continue to face ethical debates regarding the condition and how best to go about diagnosis and treatment of the disease.


One evident concern with diagnosis is the disclosure of the condition itself to the patient. A study conducted in 2018 aimed to assess the frequency of undisclosed or undiagnosed patients with AD or dementia and found that out of a sample of 585 older adults with probable AD, 58.7% were either undiagnosed or unaware that they had been diagnosed with the condition. Most likely, the diagnosis was given to family members without the knowledge of the patient (Cornett & Hall, 2008). This study points to the sheer frequency of this decision in the health field, and thus, it is important that physicians are equipped with the awareness and integrity to make ethical decisions in practice.


Let us consider the perspective of the physician and the ethical standpoint on the situation. If a physician discovers that a patient has AD from brain image scanning, the physician may not disclose the diagnosis for one primary reason: if they do so, the patient may suffer psychological stress, knowing he or she has a complicated and incurable neurodegenerative disease. In the effort to prevent this realization, physicians may either not disclose the information to the patient at all or at least tell the patient’s family. The rationale behind this decision is the age-old saying: “do no harm.” Indeed, we must not punish these physicians for their choice as it was in the interest of the patient. Evidence has shown that the simple understanding of having AD can not only worsen cognitive deficits, but also lead to more adverse health outcomes in a shorter span of time.


However, from an ethical standpoint, the patient must be aware of any conditions he or she may have. They must have an opportunity to make an educated and informed decision on their health on their own. Physicians or even family members cannot intervene in this process; however, by not disclosing diagnosis information, clinicians take away this privilege from their patients. Although the point that the patient will suffer psychological stress is valid, we must oblige to ethical standards imposed in the medical community.


Another ethical concern in treating AD is the need for intensive care in later stages of AD. As the mortality rate increases drastically as AD progresses in prognosis, it is difficult for physicians to stop the neurodegenerative effects of the condition. Even with treatments, the death is most likely imminent. This is a fact. We are not arguing against this statement.


However, some physicians, due to the inevitability of the situation, fail to put intensive care and full effort in treating the patient. As immoral as it may seem, the rationale behind the decision is logical to a certain extent. Not only does the facility save resources that they can do to save another life, which may have a greater chance of survival than the AD patient, but the AD patient may also enjoy their remaining time before death without the demanding care needed at later stages of the disease. Again, considering the situation from an ethical standpoint, the saying, “do no harm” is actually violated in that the patient is indirectly harmed by the lack of intensive care towards the end of the disease prognosis. Physicians must put full effort in all practices in the health facility, even those that may nonetheless result in the inevitable: death.


In the treatment of AD, especially at later stages of the condition, the ethical issue of patient autonomy is raised. Due to the severe cognitive deficits that occur as a result of the neuronal cells dying in the nervous system, the patient may not be able to make educated and informed health decisions. This compromises their ability to be autonomous––that is, make decisions without the support of the physicians or family members. However, the sheer nature of AD compels clinicians and family to make decisions on behalf of the patient. The question becomes: “Is there a point in AD disease prognosis where physicians and family members make health decisions on behalf of the patient?”


Although these health decisions are most likely in the best interest of the patient, especially since both family members and physicians obviously would want the patient to survive as much as possible, the lack of autonomy is an ethical concern when there are, say, those who may make decisions not in the best interest of the patient. An uncommon circumstance, this situation compels health professionals to rethink treatment procedures and guidelines when treating patients with AD.


More dilemmas of ethicality stem from these three primary ethical concerns, and as a result, the need for effective and moral procedures are increased. As more and more cases of AD are discovered, the expectation that physicians will be able to cure or at least slow down disease prognosis is invalid––this will require several decades of intense research on the disease’s pathology and etiology. Until then, the best expectations AD patients and family members can have on clinicians and neurologists is that they make moral and ethical decisions when treating the patient. As such, innovative ideas to resolve these ethical debates are needed as soon as possible.




 

Recommendations

With AD cases becoming more severe and frequent, a strategy to minimize the risk of unethical health decisions from both patients and physicians must be developed as soon as possible. As per research on three primary ethical concerns in the diagnosis and treatment of AD, outlined in the previous section, a recommendation and justification will be provided to clinicians to implement in facilities.


Let us first consider the first ethical concern in practice: the disclosure of the diagnosis to the patient. Literature has indeed suggested that even knowing a potential diagnosis of AD can lead not only to more adverse health outcomes, but also psychological stress. This is a fact, and we cannot argue with the results. The intentions behind physicians are in the best interest of the patient; by not disclosing the diagnosis, one can prevent this exacerbation of symptoms and stress. However, we must abide by ethical guidelines, especially the right to patient autonomy. The patient should be able to make informed health decisions based on all of the information available. By not disclosing this information, we usurp this privilege from AD patients. Although the disclosure can lead to adverse health outcomes, perhaps more research can be conducted in order to determine whether framing effects of the diagnosis disclosure affects reception from the patient.


It has been shown that psychologically, framing a leading question in such a way can not only influence the retrieval of relevant memories, but also influence emotions that the person may feel (Gross & D’Ambrosio, 2004). If there is a way to frame the disclosure in such a way, perhaps a way that emphasizes the conditionality of the diagnosis, we can at least alleviate the expected exacerbation of the diagnosis disclosure. For example, the following statement can be said to patients when a diagnosis is disclosed:


PHYSICIAN: “We have determined that you may have been diagnosed with AD, [Patient Name]; however, regardless of whether this diagnosis is valid or invalid, would you like to proceed with the treatment procedures?”


Here, we frame the disclosure in such a way that the diagnosis is unclear, but the physician assumes the diagnosis is valid. Although slightly unethical in that the physician is lying about the confidence of the AD diagnosis, the point nonetheless gets across to the patient: the physician thinks the patient has AD and would like to proceed with treatments if this is the case. Perhaps framing the disclosure this way will alleviate the stress associated with AD diagnosis disclosure, as there is some “hope” that the diagnosis was invalid. More research needs to be conducted and innovative ideas developed in order to further revise and expound upon this framing effect so as to reduce ethical issues and increase effectiveness.


Referring to the second ethical concern described in the previous section––the lack of full effort in patients with prolonged AD––there is a simple solution: physicians should put one hundred percent effort in the treatment regardless of the inevitability of the current situation. Each patient deserves an equal opportunity to the best care possible, and physicians are taking away this privilege by failing to provide this adequate care. If there are concerns of a lack of resources for other patients who have a better chance of being treated and fully recovered, collaborations with nearby facilities or asking local volunteer organizations to fundraise for these supplies can ensure that every patient has quality care and enough supplies to be treated to the best of the physician’s ability.


Finally, let us consider the third ethical concern outlined in the previous section––patient autonomy. As AD progresses, the associated cognitive deficits can make it difficult for patients to make logical health decisions. We propose that after diagnosis disclosure, through the framing effect technique discussed previously, a standardized form can be provided to each newly diagnosed AD patient. This form will allow patients to state their expectations and treatments they are comfortable with having at all stages of the disease prognosis. Of course, if we are utilizing the framing effects method, we must stress that the diagnosis is still tentative. However, by offering this form, the patient can make health decisions throughout their entire treatment plan before the cognitive deficits take place from excessive neurodegeneration. More research and refinement will be needed in order to develop such a form that allows patients to provide this information at the very beginning.


Overall, the best course of action is to conduct more research on AD pathology and etiology in order to determine a potential cure to the condition. Although daunting, if this cure or treatment is found, physicians can avoid these ethical decisions, as they will have the confidence that the patient will survive AD and thus will put full effort in treatment. Furthermore, psychological stress associated with diagnosis disclosure will be reduced considering that the patient is aware that the disease can be cured. Finally, more advanced treatments will allow patients to make informed decisions at later stages of AD prognosis without experiencing severe cognitive deficits.


 

References


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