NURBN 1005 : Introduction To Research & Evidence University

In cases of the ageing population, a large number of people are seen to get involved in providing care to a family member, a relative or a friend who is suffering from dementia. In cases of such people, it is often seen that decisions for such people are made by others on the behalf of the individual who is suffering from the disease (Dening et al., 2017). This paper aims to discuss whether the patients who are suffering from dementia should be allowed to make their health related decisions on their own or not. Several reports have shown that these patients experience several barriers while making such decisions for themselves like which involve difficulty in deciding what should be done. Often such individuals also lack information that is required for the decision making process or the possible alternatives that exists for a particular scenario. Therefore the argument for this is that the patients suffering from dementia should not be allowed to make decisions for themselves in health related manners (Dempsey, 2013). However in contradiction it can be stated that in patients suffering from dementia, it should not be assumed that they are incapable of making appropriate decisions. This is stated since the capability of a dementia patient to make decisions is directly dependent on the severity of the disease. In patients with moderate to mild dementia, the individuals are capable of evaluation, determination and interpreting the meaning in their lives (Sorrentino, 2014). Therefore this paper will elaborate on the evidences that exists in favour of the argument presented along with presentation of evidences that exists against the arguing statement.

In accordance to the autonomy of the western idea, in case of health matters the countries provides laws that ensures that an individual is able to make decisions or participate in the decision making process that is related to their own treatment and care. Dementia is a kind of disease that tends to progress over a period of time thereby resulting in the decreased tendency of an individual to make decisions on their own (Moye, Marson & Edelstein, 2013). However in such cases it is required to identify a difference between the aspects of competency and capacity which is often seen to have overlapping meanings although there is a difference in the use of the context. In general terms, capacity refers to the ability of a person to make a decision that is specific in relation to time or a particular situation. On the other hand competency refers to the legal capacity of making a decision by an individual that is determined by a judge in a court (Seyfried, Ryan & Kim, 2013). In most of the cases, the clinicians are involved in the assessment through which they decide if the individual possesses the capacity to make or understand his own decisions in health related matters and is able to take the responsibility the decisions or not.

As mentioned earlier in the arguing statement, the patients who are suffering from dementia often face barriers in the process of making decisions for themselves. In addition to the other barriers, another barrier that is identified in these individuals is that they lack emotional support from their family members in situations of early dementia therefore individuals who still have the capacity to make the decision, acts as a barrier to the difficult decision of options of future care (Emmett et al., 2013). This includes placing them in the residential institutions which have a 24 hours care service. Hence the decision making capability of these individuals are overlooked. Some of these individuals try to seek information however they lack to retrieve any information hence the decision making ability is not facilitated in the absence of good information and support. In such cases the common decisions along with the difficult decisions are made by the family carers, in order to overcome such barriers (Owen et al., 2013).

Studies by Fetherstonhaugh, Tarzia & Nay, (2013), show that when the carers of dementia patients were interviewed they revealed that the barriers involved the resistance of the person with dementia along with denial of the problem and rejection of help.

Although it is established that the argument that the patient suffering from dementia should not be allowed to make decisions related to the health issues, however it needs to be ensured and analysed why the patient is not able to make decisions or what affects the decision making abilities. For this there is a need of a two-stage mental capacity assessment. The strengths of the given study involves that the carers who were interviewed belonged to various range of settings from different backgrounds and socio-demographic strata, therefore the study presented a theoretical saturation (Samsi & Manthorpe, 2013). However one limitation to the given study was that all of the carers were not family carers or gamily carers, some were identified to be secondary carers. Therefore their decision might not be situation specific for the patient as it is in case of the family care givers.

In contrast to the above summary that was for the argumentative statement, the following presents a view that is against the argument statement. Patients suffering from dementia should not be just assumed to be incapable of making their own decisions since their capability often is associated with the severity of the disease (Owen et al., 2013). It is required to assess the capacity of the patient in relation to the decision that is required to be made at a given time. If the person is unable to make a decision due to the mental disability or is unable to effectively communicate the decision because of any reason, then it can be determined that the individual lacks the capacity of decision making. For characterization of capacity, there are about four decision-making capabilities that involves understanding and reasoning in addition to appreciation and expression of choice. It should be noted that the ability to make decisions is not static (Emmett et al., 2013). There are several factors that affects the capacity in a dementia patient such as fluctuations of the severity, certain medications along with use of delirium, several infections, drowsiness, and sundowning. It is recommended that these factors should be taken into account while the capacity of the person is determined since treatment of these reversible conditions can improve the capacity in the patients (Moye, Marson & Edelstein, 2013).

In a study by Seyfried, Ryan & Kim, (2013), it was reported that the patients suffering from mild dementia showed capacity of appreciation, choice and reasoning in terms of decision making. Although in cases of complex treatment choices they lacked decision making ability however in case of decision making related to the daily care they showed preferences and successfully make choices. From a legal perspective it is seen that all of the individuals, should be treated as equal irrespective of age. They are entitled to enjoy similar liberties (Black, Wechsler & Fogarty, 2013). However often it is perceived that an elder may be more vulnerable. In such cases they require more protection from the law because of their life illness or situation such as dementia. For such cases it is required for the issues of capacity to be considered with most sensitivity. Care should be ensured in order to provide a protected and considered right which often lacks thereby imposing a limitation to such studies.

In order to provide evidence to the mentioned argument that individuals suffering from dementia should not be allowed to make decisions on their own, several studies have been considered. Lord, Livingston & Cooper, (2015), in a study reveals that with the progress of dementia there is loss of memory, along with problems of communication and reduced mental competence. The author states that these are the basic cognitive abilities that should be present or rather are the prerequisites for making of autonomous decisions. However such decision specific competence is lacking in such patients. This can be evidently recognised from the McArthur Competence Assessment Tool for Treatment (MacCat-T), which is implemented in the study by the author (Manthorpe, Samsi & Rapaport, 2014). The test is performed in order to analyse the functional abilities of the person in terms of understanding of relevant information ain addition to appreciating the significance of the information related to one’s own situation along with reasoning by consideration of the alternatives and finally expressing of a choice.

In a study by Emmett et al., (2013), it is revealed that the decision making capacity should not be confused with judgement. Therefore care should be given to ensure that the person suffering from dementia is making an informed decision and not just a good decision. The individuals need to use all the information that is present and not only have an access to the limited range of the immediate facts. In such cases, it is advisable to use assistance from the professionals in order to make an informed decisions. In the process of decision making related to the health issues, the assistance of the professional physical or the care giver is required since it had been seen in other studies that the patients suffering from dementia often face barriers in retrieving appropriate information required for decision making. In such cases steps should be taken for professional encounters with the doctors who can help in obtaining the correct diagnosis. Secondly they can be introduced to proper services which helps to provide quality healthcare. Finally there is a need to make decisions about the care homes (Span et al., 2014).

People with dementia are often in need of increased care for which there is a need to move the patients in care facilities which provide 24 hours care since the illness often progresses as a result of their increase of dependency, concerns of safety and the neuropsychiatric symptoms. Often there is a tendency for the family members of such patients to become frail and thus they are unable to provide care to the patients. In such cases, the process of decision making is stressful both for the person suffering from dementia and the members of the family (Dening et al., 2017). This leads to rise of disagreements. Therefore the study shows evidences that in such cases the family carers find proxy decision-making. This is especially the case around places of care that are challenging as well as distressing. Such cases mostly arise when decisions are made against the wishes of the care recipient or in situations where support from healthcare professionals is deficit (Samsi & Manthorpe, 2013).

Therefore from the above discussion it can be concluded that people suffering from dementia should not be involved in decision making in terms of their own healthcare decisions. However people with moderate severity of dementia showed variability in the way they participated in the decision making procedure. The involvement of optimal nature was ensured by positioning them as they were capable of making decisions by assessment of the decision-specific competence along with the clarifying values. This was accompanied by the understanding of the significance of relationships and the context. However evidences provided from the various studies showed that the individuals suffering from dementia often progresses to a state where there is loss of memory and loss of communication abilities. In the same time care should be given to ensure that the person suffering from dementia is making an informed decision and not just a good decision. The individuals need to use all the information that is present and not only have an access to the limited range of the immediate facts. As the dementia patients often lack access to relevant information, therefore they should not be allowed to make health related decisions on their own.

References:

Black, B. S., Wechsler, M., & Fogarty, L. (2013). Decision making for participation in dementia research. The American Journal of Geriatric Psychiatry, 21(4), 355-363.

Bollig, G., Gjengedal, E., & Rosland, J. H. (2016). They know!—Do they? A qualitative study of residents and relatives views on advance care planning, end-of-life care, and decision-making in nursing homes. Palliative medicine, 30(5), 456-470.

Dempsey, D. (2013). Advance care planning for people with dementia: benefits and challenges. International journal of palliative nursing, 19(5), 227-234.

Dening, K. H., King, M., Jones, L., & Sampson, E. L. (2017). Healthcare decision-making: Past present and future, in light of a diagnosis of dementia. International journal of palliative nursing, 23(1), 4-11.

Emmett, C., Poole, M., Bond, J., & Hughes, J. C. (2013). Homeward bound or bound for a home? Assessing the capacity of dementia patients to make decisions about hospital discharge: comparing practice with legal standards. International Journal of Law and Psychiatry, 36(1), 73-82.

Fetherstonhaugh, D., Tarzia, L., & Nay, R. (2013). Being central to decision making means I am still here!: The essence of decision making for people with dementia. Journal of aging studies, 27(2), 143-150.

Lord, K., Livingston, G., & Cooper, C. (2015). A systematic review of barriers and facilitators to and interventions for proxy decision-making by family carers of people with dementia. International Psychogeriatrics, 27(8), 1301-1312.

Manthorpe, J., Samsi, K., & Rapaport, J. (2014). Dementia nurses’ experience of the Mental Capacity Act 2005: a follow-up study. Dementia, 13(1), 131-143.

Miller, L. M., Whitlatch, C. J., & Lyons, K. S. (2016). Shared decision-making in dementia: a review of patient and family carer involvement. Dementia, 15(5), 1141-1157.

Moye, J., Marson, D. C., & Edelstein, B. (2013). Assessment of capacity in an aging society. American Psychologist, 68(3), 158.

Owen, G. S., Szmukler, G., Richardson, G., David, A. S., Raymont, V., Freyenhagen, F., … & Hotopf, M. (2013). Decision-making capacity for treatment in psychiatric and medical in-patients: cross-sectional, comparative study. The British Journal of Psychiatry, 203(6), 461-467.

Samsi, K., & Manthorpe, J. (2013). Everyday decision-making in dementia: findings from a longitudinal interview study of people with dementia and family carers. International psychogeriatrics, 25(6), 949-961.

Seyfried, L., Ryan, K. A., & Kim, S. Y. (2013). Assessment of decision-making capacity: views and experiences of consultation psychiatrists. Psychosomatics, 54(2), 115-123.

Sorrentino, R. (2014). Performing capacity evaluations: what’s expected from your consult: core components of a capacity evaluation are understanding, free choice, and reliability. Current Psychiatry, 13(1), 41.

Span, M., Smits, C., Groen-van de Ven, L. M., Cremers, A., Jukema, J., Vernooij-Dassen, M., & Hettinga, M. (2014). An interactive web tool to facilitate shared decision making in dementia: design issues perceived by caregivers and patients. Int. J. Adv. Life Sci, 6, 107-121.