Introduction
Dementias are often associated with ethical issues in relation to the process of decision making in such end stages of dementia whether to feed the patient or not. A question on this issue is imposed accordingly which points out the idea of evaluating whether such action is ethical or not.
Dementia is identified when acquired cognitive insufficiencies are adequate to get in the way with social or occupational performance in a person not including depression or confusion of consciousness (Desai and Grossberg, 2005). This syndrome is normally developmental due to neurodegenerative (primary) or vascular causes but is infrequently reversible.
Ethical Dilemmas
Basically, an ethical dilemma arises and this is described by a scenario that will usually comprise a determined tension between moral imperatives wherein one should be compliant but other parties will be disobeyed. Certainly, this situation is also coined as an ethical paradox since in moral philosophy; paradox acts a major role in ethics arguments. Specifically, taking for example whether the case of end-stage dementia should be fed or not accounts for some grounds of relating with an ethical dilemma (Guedj et al., 2006).
It is not always a contradicting idea with the technicality and care by the nurse for a patient but more often than not, these questions lead to confusion such as the proper care among the elderly, the personal thoughts, and the like. Feeding a patient in his or her end stages of dementia may harm and affect the condition but a conflict arises when a nurse thinks that it is going to be the last phase of that person’s life (Cahill, 2004).
Ethical dilemmas are usually viewed to try to disprove an ethical system or a moral code like the worldview that portrays or starts from it. Arguments can be referred to in various ways such as the case of the patient in their end stages of dementia. It is necessary to identify whether the suspension of feeding tubes for the patient is ethical or unethical because conflicts arise. Opting to withdraw the tube may lead to the physiological deprivation of the patient and as a result, the worst-case scenario is the death of the patient (Bond, 2001).
On the other hand, the other alternative, which is to continue feeding the patient through feeding tubes and another life-sustaining treatment process of feeding may disappoint and lead to the depression of the patient because of his or her dislike. As a caregiver, it would be an issue on what decision to be made (Chochinov, 2002).
Some considerations should be given to the fact that the decision-making process in ethical issues in feeding points out to the relatives or the patient. Nurses’ does not merely set the ideas or the medical professional.
According to some researches, decisions merely come from the side of the affected person. However, ethical dilemmas arise to the carers or nurses because of having a personal attachment to the patient, they are having problems on deciding what should be done (Knopman et al., 2001), is it to obey what the patient wants which may result in the death of the patient or to continuously sustain the nourishment of the patient but largely brings much stress because of the patient’s dislike with his or her condition. This largely affects the whole perspectives of the people which concerns the ethical aspects of life and argues with the scientific views of the experts.
Discussion
Caregiving in dementia
Giving proper care for dementia needs to emphasize multiple roles and responsibilities for the patients. The reports are more often as reliable as objective measures of cognitive decline and eventually alert the health care professionals to the occurrence of dementia. Caregivers act an important role in giving direct care for patients with dementia (Pitner and Bachman, 2004). In fact, physicians are more likely to depend on caregivers to monitor the changing status and symptoms and need to include them in the treatment plan. The absence of a caregiver is a major interpreter of prior institutionalization of people with dementia.
Greater professed caregiver load also results in earlier institutionalization as well. Almost up to 50% of caregivers experience noteworthy psychiatric indications during the period of their Caregiving (Herbert et al., 2003). Regardless of these negative consequences, a lot of caregivers also respond that they meet complacency with their respective roles, for the most part, is a sense of achievement in keeping their loved ones at home.
Ethical issues in dementia
There have been many writings about the empirical studies made with dementia. Certain research on Medline which centers on Alzheimer’s disease or dementia has come out with thousands of reports over the past several years (Alva, 2003). However, the studies which relate to the ethical issues on dementia has been consistent at about 3% of the whole studies every year and there have been indications that ethical issues appear to be essential within the studies.
Thus, the focus on the ethical issues in dementia should be given many highlights. One of the studies used the analysis of keywords and their co-occurrence allowed other papers to trace the intellectual structure and organization of the perspectives that alter in the structure over time (Ding et al., 2001; Noyons, 2001). Some co-word analysis is depended on the arguments that the repeated co-occurrence of various terms across the literature of a discipline indicates that the relationship between these terms has some importance within the last ideas (Zani, 2007).
Risk to others, descending ability to make decisions, and loss of insight must be empirically viewed from the perpetuation of autonomy (Zerky and Hauw, 2002). Determining the capacity of germane ethical issues should be emphasized such as the decisions in feeding and other significant issues such as decision-making- respecting individual choice, quality of life, behavior control, advance directives, and end-of-life decisions (Boustani et al., 2003).
Sometimes these issues are largely attributing to the decisions of the key players in the situation; patient, nurses, family, and the medical professional (Powers, 2000). Specifically, in one of the real-life situations that happened before with a patient who died with the same issue that was cited by Baldwin et (2003) al in his work, Claire Conroy who was an 84- year old patient in a nursing home has suffered dementia and had a nasogastric feeding tube for the reason of she could not eat well and not enough nourishment is taken orally.
Conroy was also bedridden at that time, can hardly speak, infected leg, with a lot of decubiti, and is incontinent and constricted into a semi- fetal position. But still, she manages to interact with her environment though in a limited way. The only family of the patient apparently decided to remove her feeding tube and appeared to the court for he thought the patient, his aunt would also not want it. The court made trial proceedings about the case and while the hearing goes on, the court allowed the withdrawal of the tube but the case is still ongoing. However, the patient died while the case is still in process. Basically, the life of the patient ended while the case was still under appeal.
Although the main subject of the case has gone, the trial continued its hearing because the court treated the issue as sensitive and important for those of the same instances. Thus, the final decision of the court, New Jersey, in particular, prevailed that the decision making process should be given to the patient’s will and the suspension of feeding tubes and other life-sustaining treatments should be legally exercised according to the wishes and best interests of the patient (Baldwin et al., 2003).
Another study identified the views of the carers in an argument with regard to the most important ethical issue in dementia. The answers of the respondents vary as they revealed that; some believe that the most vital issue is the physical and moral treatment of the patient with self-respect, reverence, and thoughtfulness for the human being (Koppelman et al., 2003).
The exact point that the patient wishes can no longer be in the majority unchanged by other considerations or in other words, the patient’s best interests are the priority of the carers and no interests of others, medical advices and legal aspects matters if the patient’s decisions are made. Issues such as the ethics of providing untrained carers large amounts of drugs to manage, the need for confidentiality between doctors and carers, the importance of doctors’ awareness of carers’ needs, the nature of care in nursing homes, the need to respect previous moral beliefs, and the proper handling of the end of life and decisions about treatment.
The issues are largely seen by professionals as well. However, when the involvement of the carers’ perspectives matters, the ethical issues appear to be less predictable and more varied than the professional literature seems to recommend. Listening to the language of morality gives the awareness of the importance and vitality of moral understanding. Though the major issue has been pointed out, the views and opinions of the related person should still be catered to (Sadik and Wilcock, 2003). Speculations that these ethical issues contribute to the burden of the carers and the physiological impact of dementia and might be centered by the professionals who may help carers to deal with them (Robinsons, 2002)
Ethical Issues in Dementia Care; Making Difficult Decisions
As what the work of Julian C. Hughes and Clive Baldwin described in the decision-making process in dementia, “morals are messy” and “ethics is everywhere”. The book was addressed to the carers of people with dementia and is intended to help them identify the ethical issues involved in caring and to be able to understand how to deal with difficult ethical decisions (Hughes and Baldwin, 2002).
As well as gaining confidence in making such decisions and being aware of the need to include other people accurately when the decision is too hard to manipulate. It is indeed an interesting combination of somehow challenging theoretical notions together with the case studies taken from the researches of the authors with family carers. The ideas of consequentialism, principlism, conscience, and deontological ethics have been described by Hughes and Baldwin (2006).
The most significant ethical issues and dilemmas faced by carers of individuals and families coping with dementia were pointed out by the authors as well (Randers and Mattiasson, 2004). A prominent role for conscience is favored, not only the ‘little inner voice’ but an informed sense of right and wrong. The formation of conscience is said to be the most essential variable to be considered in making decisions and almost nothing about how culture or social environment might shape or alter it. However, some of the basics of ethics are presented and is enough for those who argue with its practical applications.
Emphasis on the importance of communication is also vital in approaching this kind of condition for the relationship of carers with the patient (Prigerson, 2003). The value of telling people the truth, including patients, lies in preserving trust and supporting ongoing human relationships.
According to Hughes and Baldwin (2006), the treatment decisions should be surrounded by an overview which means to have a human concern. From this ethical point of view, it is encouraged to think about the capacity, competence, consent, and best interests of the patients. Thus, ethical care primarily focuses on the importance of relationships. Cases such as drifting, unsuitable behaviors, and keeping up alternatives are used to help the reader comprehend how to give ethically informed care. Narrative issues in ethics are a way to appreciate the person’s particular situations and understand the personal stories and how they are able to connect with the moral theories.
Conclusion
The discussion on the decision making process about eh end-stage of dementia whether to feed the person or not will more likely to fall under the patient’s decision. It is ethical because it is the choice of the patient and unethical decisions will just be accounted for and considered if such decisions did not come from the side of the affected person. Of course, this issue will be highlighted to the carers because they are the ones who are involved and plays the most crucial role (Hughes and Baldwin, 2006). Acknowledging these important and crucial roles played by the caregiver in dementia care comprise of the work with caregivers and families on an enduring foundation from the time of diagnosis of dementia until the death of the patient; as well as the scheduling regular appointments for patients and caregivers together and alone (Dewing, 2002).
Considering the perspectives of Hughes and Baldwin (2006), in the decision-making process, relationship matters a lot and thus it implies to be considerable enough in deciding whether to feed the patient in his or her end-stage of dementia. Generally, the case illustrated with what happens to Ms. Conroy depicts a clear example wherein the decision of withdrawing the feeding tube before the court trial ended was treated like a sensitive and significant case for those who also face the same scenario. As for how the interpretation of the case portrayed the sufferings of a patient who is in its end stage of dementia, visualizations will be more favorable to the feelings of the patient though some people view this as unethical because this may somehow mean ‘mercy killing’ or euthanasia, this is due to the decision of the patient (Moore, 2004).
This issue can be relatively regarded as ethical as how the court tolerated such action and backed up the necessary procedures in order to come out with a just and vital decision about the case of Ms. Conroy. It prevailed that to suspend the life-sustaining objects of a person does not merely imply an unethical action because this results in the interest of the patient. If a patient wishes to take such action, it should be given to her as part of her decision for her own life.
Conscience is focused on some studies mentioned above wherein ethical dilemmas merely arise. The conscience of taking away the food that sustains the life of the patient or to shorten the sufferings of the patient is the question (Hughes et al., 2002). This issue is indeed very difficult to decide on and brings much trouble with the concerned people. But, applying the disciplines and best interests of the patient on making decisions is the best way for carers and families. The final decision should be given to the patient and that will be the point when one can say that feeding a patient in his or her end-stage dementia is ethical or not. Understanding the profound analysis of experts evaluates the recognition of respect with the life of the patient and apparently disregards the scientific views.
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