Alzheimer's Disease and End of Life Decisions - Research Paper Example

Alzheimer's Disease and End of Life Decisions Introduction Alzheimer’s disease, usually abbreviated as AD, is a form of Dementia. Dementia is a form of illness that manifests itself through signs such as memory loss, change in personality and rapid changes in moods, altered communication and loss of speech. Currently, statistics show that there are over 500, 000 people USA suffering from dementia. The same statistics also show that one of every eighty five patients in the USA have Alzheimer’s disease (Lu and Bludau, 2011). Alzheimer’s disease has its name originating from the psychiatrist who discovered it, Alois Alzheimer. This was in 1901 when he observed and studied the disease in his first patient, and wrote about it in 1906 when his patient died (Lau, 2007). The susceptibility of a person being infected by this disease increase with increase in age, hence older people are most likely to get it. Alzheimer’s disease, once diagnosed has no cure or reverse, death is always there even after treatment (Soukup, 1996). This work shall be divided into three main sections, where the first section will address the disease, what causes it, what are the symptoms of the disease in each stage, and briefly address the issue of prevention. The second part of this work shall address the very sensitive part on the ethical issues faced by families /surrogates making end of life decisions on behalf of family members with Alzheimer’s disease. The last part will be a discussion on the ethics of withholding or withdrawing artificial nutrition and hydration. Signs and symptoms, stages, causes and prevention Alzheimer’s disease manifests itself differently in three different stages, the early stage, progressed or middle stage and the severe stage. In the early stage, the symptoms of a patient might be confused with effects of old age, but when a close study is done by a clinician or a psychiatrist, the difference shall be seen. Some of the symptoms in the early stage are; forgetting and misplacing personal belongings such as wallets and notebooks, mild agitation, forgetting the names or faces of close relatives, inability to learn new information, decreased social interaction among others. At this stage, relatives, spouses of a person with such behaviors tend to associate it with old Age. The patient can still communicate, though not very fluently but will make comprehensive phrases and statements. At such, the patients need a little help from their spouses or relatives, who are entrusted to take care of them (Soukup, 2013). The progressed stage of Alzheimer’s disease is an advanced stage of the first stage. The symptoms that are evidenced in this stage are more severe and pronounced than those at the early stage. Some of the most common symptoms include; lack or loss of sleep or waking up too many times at night, sleepwalking, inability to comprehend, read or write even if one could previously do so, gradual loss of one’s own identity, loss of the ability to remember recent past events, confusing people’s names or names of things, or pronouncing words wrongly, inability to take care of oneself, severe agitation and restlessness, increased disassociation and interaction with others among others (Oliver, 2012). When these symptoms become evident, relatives or friends or family members of the patient will now know that these are not just old age symptoms, but are symptoms of Alzheimer’s disease. If a clinician or a psychiatrists help had not been sought before, then it is the stage where they do so. At this stage, the patients can still communicate, though not in a manner that is comprehensive. Their phrase and statements are not very coherent, they will refer to things using the wrong names, for example, saying that a dog is a book (Lau, 2007). In most cases, the patient will be unable to do basic things for himself, like dressing up. Here, the patients now require the full care of their care givers to be able to do anything. The care givers will guide them to do what the patients want, and at times will have to do everything for the patients, including giving them a bath (Smith, 2012). The severe stage, as the name suggests is the stage where the condition of the patient has really deteriorated. There is no improvement in all the above named symptoms. One can clearly tell this stage through the following symptoms that are very common among patients with Alzheimer’s disease. The patient can no longer understand any language, even the one the best knew and frequently used. Their ability to take care of themselves is zero, and that is, they cannot feed themselves, dress up or take themselves to the proper places for long or short calls. The patient’s brain loses its cognitive ability, i.e., the ability to identify people; they no longer know their relatives or friends (Lu and Bludau, 2011). They suffer from severe memory loss, for example, suppose their spouse has died, either in the recent past or a long time ago, they might still ask, “Where is my wife?” In most cases, the very severe symptoms of this stage are inability to swallow food, hence necessitating the need for artificial nutrition and hydration; some body parts lose their functions, for instance, kidney failure and loss of sight and hearing ability. Some patients even have their skin peeling off. At this stage, communication with the patient is almost impossible, but some of them can still understand sign language, hence if one indicates to them to come, they might comprehend. This stage will sometimes be referred to as the end of life stage (Smith, 2013). The causes of Alzheimer’s disease are not clearly known, but suggestions have been put forward, though not proven about what causes it. The brains of Alzheimer’s disease patients usually have dead nerve cells building up, and protein cells dying in the brain. This is the root of Alzheimer’s disease. Deficiency or shortage of acetylcholine in the brain is said to be a big contributor to this disease. It is a neurotransmitter in the brain that communicates different messages to the nerve system. When it is produced in insufficiency, the Alzheimer’s disease might occur (Lau, 2007). Hereditary factors have also been cited to be among the probable causes of this disease. A research on the family background of people who had Alzheimer’s disease showed that if there had been earlier cases of this illness, then the chances were high. In the research, 35% of patients who had the disease had relatives who had died from the disease (Soukup, 1996). The most susceptible were those who had Downs’s syndrome. This is not to say that it has been scientifically proven that the disease is hereditary, but neither does it dispute the fact that chances are higher when there is a history in family background of people who had been infected. Depression is another proposed causal factor. It has been shown that people who have series of deep depressions in their lives can be patients of Alzheimer’s disease. In the researches carried out, some of the relatives or spouses of patients admitted that at one time in their lives, the patients had fallen into depressions (Lu and Bludau, 2011). Age is also associated with Alzheimer’s disease. As earlier noted, the risk of getting this disease increases with increase in age. Old people (65 years are the bigger percentage of the patients (Lau, 2007) There is no cure for Alzheimer’s disease, but the treatments and drugs administered are to help moderate the symptoms. Epidemiological studies suggest that not smoking and taking a Mediterranean diet might just help prevent the disease. Mediterranean diet is a diet of fruits, cereals, green vegetables, fish and red wine (Soukup, 1996). As seen from the first part above, the patients can no longer take care of themselves. In the severe stage, they cannot feed themselves. They have to be fed like young toddlers, and when the condition deteriorates, eternal nutrition is introduced (Soukup, 1996). This second part of this work focuses on the ethical issues faced by families /surrogates making end of life decisions on behalf of family members with Alzheimer’s disease. When a person is diagnosed with Alzheimer’s disease, a marriage partner, a close relative or a friend who was very close to the patient is the one to take care of them (Oliver, 2012). During the early stage, the patients caregiver help the patients in simple things such as locating their misplaced items, reminding them of who people are among other basic things. In the progressed stage, the caregivers’ responsibilities increase (Lu and Bludau, 2011). They have to do even the basic things with/ for the patient. They have to ensure that they are happy, answer their many questions and ensure that their social interaction is not so low. The patients might want to keep to themselves, but this is not a wise thing. At the severe stage, the caregivers burden now drastically increase, they have to make the end life decisions for the patients. End life decisions differ for different patients depending on their type of illness (Lau, 2007). When it comes to such decisions of patients suffering from Alzheimer’s disease, a lot of burden is placed on the caregiver. It’s been noted that at this point, the patient can do nothing for themselves; they cannot express themselves or say what they wish done for them. It is a headache for the caregiver, and that is why a person who is close to the patient is taken to play this role. There are ethical issues that the caregivers face in making end of life decisions for the patients, especially if the patient had not expressed his wishes earlier before they become the person they are (Soukup, 1996). Ethical issues Palliative care, is it the best choice for the patients? Some caregivers feel that the patient will be better if they are with them all the time, that the expression of love to them will make them live longer (Levin and Murray, 2007). However, palliative care is also essential and very important since the patient receives good care from the palliative care team. It is said that palliative care experts know better, but do they give the love and care that the patient gets from being with family members? (Smith, 2013). Secondly, there are physical and emotional needs of the patient. There are arguments that in palliative care homes, the patient does not receive their physical needs the same way they would at home (Oliver, 2012). However, it gets to a point where the patient’s illness is beyond the caregiver’s ability, is it time to let go? People will at times take this as being selfish and not having the patient’s interest at heart. However, it is very tasking to care of an Alzheimer’s disease patient at home and worse when the patient is at the severe level. The surrogate or family member is expected to make vital decisions on behalf of the family. For instance, there might be some form of medication that is necessary for the person, but it’s already known that this disease has no cure or reverse effects, would the patient want it bought? This decision is left to the family members to make on behalf of the patients (Levin and Murray, 2007). This might face great criticism from people. If the caregiver chooses not to purchase the (expensive) medicine, he might be accused of wanting the patient to die, of not caring or being concerned about the patients suffering. If on the other hand one decides to purchase the medicine, they might be accused of misusing finances, whether from the patients kitty or otherwise, that they are purchasing medicine for someone who will eventually die (Smith, 2013). For a patient with Alzheimer’s disease, death is inevitable. But is euthanasia a choice for such a patient? It comes to a point where the patients suffering is too much, the medications administered are of no help and death is there, but so slow to come. If the doctors suggest euthanasia, what is the caregiver supposed to do? Are they supposed to consent or to refuse? What would the patient opt for if they could give their opinions? (Smith, 2013). The family member or caregiver has to go rely on the values of the woman, but what if the values do not give a pointer or a direction to what one should do? It is not upon a fellow human being to take, or facilitate the taking of life of another human being. This raises the issue of morality among people. Is it right to consent with euthanasia? (Gaventa and Coulter, 2005). It’s been shown in researches that in their last days, some Alzheimer’s disease patient drastically change to become who they were not. Earlier in life, maybe these patients had their own wishes as to what they would have loved their end of life to be (Oliver, 2012). Now that they are sick and can hardly make any decisions for themselves, should their wishes still be followed? Lastly, when should surrogate/family members make end of life decision for patients? (Smith, 2012). They might be condemned that they are taking advantage of the patients’ illnesses to make decisions that suit them. What about the cost of maintaining and keeping these patients at home or in palliative care centers? What of the losses in terms of their time, their earnings, their freedom and their susceptibility to mental disorders? (Levin and Murray, 2007). All these are ethical issues which are faced by family members who make end life decisions from patients with Alzheimer’s disease, and which continue to raise heated discussions among researchers, clinicians, religious groups and scholars. Withholding and/or withdrawing artificial nutrition The last part of this work is a focus on the ethicality of withholding and withdrawing artificial nutrition and hydration. In the severe stage of Alzheimer’s disease, patients cannot make any decisions for themselves, some lose their ability to speak, see or hear (Lu and Bludau, 2011). The caregivers are compelled to make decisions based on the patient’s wishes (if there were any) and on the values they held before they became ill. Issues pertaining to withholding artificial nutrition and hydration are in dire need of address. It has been established that during the final days of the patient, their health has deteriorated and there are no chances of getting better. Some can suffer from aspiration and can no longer swallow food and thus they require artificial nutrition, which refers to the use of tubes to feed the patient and hydrate them (Lau, 2007). There are many arguments on whether this artificial nutrition should be administered to the patient. Some people say that it should not be withheld from the patients. Just because there are no chances of the patient getting better does not mean that they should be treated as less humans (Smith, 2013). They clinicians and psychiatrists should not compel the caregivers not to have this nutrition administered to their patients. They are still human, as sick as they are and should continue to be fed through whichever means. Some researchers and Religious leaders say that denying or withdrawing tube feeding from a patient is a form of euthanasia. They argue that the right time, the patient will eventually die, but it is no mans right or duty to facilitate the end of somebody’s life. Being humane does not allow one to do this (Smith, 2012). In addition, some caregivers say that if they let their patient be denied of this nutrition, they would be haunted by guilt, which they can’t live with, and to avoid this, they would rather have the artificial nutrition administered. Denying the patient this nutrition would be perceived as neglect to them (Smith, 2013). However, some clinicians on the other hand argue that some tube feeding is very painful, unpleasant and uncomfortable for the patients. Tube feeding would mean more pain being inflicted on them. Also, they argue that dehydration is part of the dying process, of death which would eventually be. In addition, some medical practitioners say that the patients, at that time, do not need that food or the water as a healthy person does. Lastly, the food and water does not lessen the effects of the disease, does not reverse the symptoms, neither does it improve the persons health (Soukup, 1996). Conclusion Alzheimer’s disease and the ethical values surrounding it need more and more research and address. It is evident that once one has been diagnosed with this form of dementia, nothing much can be done since there is no cure (Soukup, 1996). The only thing that can be done is to make the patients feel that they are still valuable, even though their bodies, especially of those patients at the end of life stage, reflect otherwise. Caregivers are burdened especially when making end of life decisions, but are the decisions they make based on who the patient was, is today and who they had wanted to be? (Gaventa and Coulter, 2005). These issues discussed above can be reduced if people would talk out of what they would wish done to them if they were diagnosed with Alzheimer’s disease (Lau, 2007). Since no cure has been found, maybe this would be the best thing to make the patients’ end of life days better. References Gaventa, W., & Coulter, D. (2005). End – of –Life- Care: Bridging Disability and Aging with Person Centered care. London: Haworth Pastoral Press. Lau, L. (2007). Alzheimer’s Disease. Springer: New York. Levin, C. , & Murray, T. (2007). The cultures of care giving: conflict and common ground among families, health professionals, and policy makers. Baltimore: Johns Hopkins University Press. Lu, L. & Bludau, J. (2011). Alzheimer’s Disease. Chicago: ABC-CLIO. Oliver, D. (2012). End- of- Life- Care in Neurological Disease. New York: Springer. Smith, G. (2013). Palliative Care and End –of –Life Decisions. New York: Macmillan. Smith, S. (2012). End- of –Life Decisions in Medical Care: Principals and Policies for Regulating the Dying Process. Cambridge: Cambridge University Press. Soukup, J. (1996). Alzheimer’s disease: A Guide to Diagnosis, Treatment and Management. Chicago: Greenwood Publishing Group. Read More