Luis Carlos Álvaro, a clinical neurologist at the Hospital of Basurto (Bilbao) and lecturer at the University of the Basque Country (UPV/EHU), has had an article published on the capacity of patients with dementia to make decisions. It is entitled Competencia: conceptos generales y aplicación en la demencia (Competence: general concepts and application in dementia), and has been published in the journal Neurología.
Álvaro is a member of the Health Care Ethics Committee at the above hospital, and this has influenced the motivation behind his paper. “It is about the interaction between a clinical pathology that is very common for us [neurologists] and the capacity to make decisions, and which has received much attention from committees on bioethics,” he says. But that is not all, because this paper serves to assert the importance of neurologists when it comes to determining the extent to which dementia has damaged the patient’s competence: “Owing to a tradition that we neurologists at least do not share, it is often the psychiatrists who assess competence in the case of dementias. This is an area in which we neurologists are in fact the ones who can contribute most, because it is our pathology. We know the patients and deal with them, and we are the most qualified when it comes to taking decisions of this kind.”
Álvaro explains what we are talking about when we refer to competence: “It is about assessing the capacity to decide in any activity in daily life. Most of the decisions have to do with the patient’s daily life: whether he or she wishes to be admitted to a nursing home, whether he or she wants to take a particular medication… It is about deciding whether his or her mental capacity is sufficient to be able to take a decision of this kind.” Something which, in the view of this author, is very complex, and in which no standardization has yet been reached on a universal agreement or on the tools, although there are several available: “It is not easy, because there are many kinds of decisions, and many stages of dementia, too.”
As far as the stages are concerned, the article refers, among other things, to the so-called Drane table, which specifies the level of capacity that neurologists should demand of the patient (not just in cases of dementia), in terms of the risk involved in the decision to be taken. In other words, the more risks that are involved in accepting or rejecting a procedure, the greater the patient’s competence has to be, and vice versa. For example, the capacity of a patient with meningitis has to be high if he or she wants to refuse to take antibiotics, since the consequences of such a decision may prove fatal. By contrast, such a degree of capacity is not required of a patient with dementia when what is being rejected is a cranial tomography, because the risks of not performing one are minimal.
Nevertheless, in connection with this matter, he points to certain practices in need of improvement from the bioethical perspective: as the patient does not normally reject the treatment, nor do there tend to be high risks in the event of doing so, the lack of competence passes unnoticed, and so there is little sensibility towards this incapacity. “The lack of power to decide in favour of a specific activity is very common, but as in most of them there are no consequences because they are minor matters, the alarm bells do not usually sound. But that does not exempt us from assessing them. We ought to assess them more and bear in mind that they depend on the level of decision required,” says Álvaro.
Nowadays, neurologists resort mainly to experience to assess whether the patient understands the information being transmitted to him or her and the consequences arising out of the decision he or she makes. As pointed out already, there is no standardization of the tools available, “but in any case they are always useful,” as Álvaro points out. They consist of different sets of questions that are designed to enable one to make sure that the patient understands the information and the consequences of making a decision one way or the other, and is aware of the alternatives and their benefits and drawbacks, etc.
This researcher lists in his paper a series of guidelines for evaluating competence; such as the capacity criteria of Becky White (Georgetown University, Washington), the ACE guidelines of the University of Toronto, the MC-CAT of the University of Virginia, etc. The White guideline, for example, is conducted in the form of a semi-structured interview; it considers, on a range of scales, the capacity to be informed (for example, to recognise the importance of the details transmitted), cognitive and affective capacities (to argue the options and put them in order of importance), the taking of decisions (accepting and maintaining the chosen option), and the critical review of the process (telling someone about the chosen option and giving reasons). Álvaro points out that in the daily clinical scenario the interview may suffice to determine capacity, as long as it is sufficiently structured for detecting the key aspects, and for this the guidelines are extremely helpful.
There are already doctors with testing and evaluations that can determine if a person is competent. I was diagnosed with Pick’s in July 2009 by a neuropsychologist, Dr. Susan Crum. This is all documented with a neuropsychological evaluation and a QEEG brain mapping. Dr. Crum is a forensic neuropsychologist who does evaluations for Social Security, criminal and civil court. She does mental status evaluations. She does evaluations to determine if someone needs to go into nursing homes, receive special education services and more. The end of December 2009 I started therapy. I am legally competent as of my last neuropsychological and QEEG Brain Mapping in December 2011. I am on no medication. Since the end of December 2009 Dr. Crum developed a therapy program for me that include neurofeedback that I do with equipment I have at home every day. Cognitive rehabilitation program that help me regain and improve attention, concentration, memory, impulsive and anger control. I wear a Transcranial electrotherapy unit from about 8 am to 5 pm 7 days a week that has regulated my mood and pain control. I have a better quality of life because I am doing therapy and holding off the behavior manifestations of the Pick’s. I know this does not mean I am cured or the atrophy will slow down because of the therapy I am doing. I know that I feel well and am functioning within normal limits because I am doing therapy. My quality of life is good and my being independent may last longer. Dr. Crum is following my condition with neuropsychological and QEEG Brain Mappings and I have 4 at this time. They support the improvement of my control over the behavior manifestations of the Pick’s. I am willing to give releases for my evaluations and records if it can help.
Please contact Dr. Crum and find out what she is doing.
Dr. Susan Crum Office: Avon Park office 863-657-2093
902 West Main St. Avon Park, Fl 33825
I am very grateful to Linda Montalvano for having taking into account the comments regarding our recent paper about capacity in dementia. Patients are the focus of our works and potential achievements, and any consideration they could have towards us is a merciful sign that we acknowledege.
Linda disorder is a type of the so- called fronto- temporal dementias. In this spectrum of ailments the focus of brain atrophy is centered in either the frontal or the temporal lobes. Pick' disease is mainly frontal. Therefore, the main symptoms are the consequence of this localization: behavioral disorders, adopting either disinhibited forms or the opposite, apathic or disexecutive forms. I understand that Linda is affected by anyone or by a combination of these behavioral types of dementia, although her sympoms are under control due to the hopeful treatments that she follows. In my opinion, she is fully aware of the disorder and devoted to its control, which are a good index of a favorable prognosis. Actually, the point is life quality and and emotional well- being, both aspects achieved by Linda.
Another point of consideration is the cognitive preservation of this patient. Distinctly to Alzheimer's disease, cognitive functions are usuallly preserved up to the most advanced stages of the disorder, notwhitstanding the severity of the behavioral impact. This means that having under control the protagonist behavioral symptoms will let the patient do a full- scope life to a certain extent. As the underpiinngs of capacity mainly rely on cognitive and emotional situation, I understand that Linda keeps capacity for any task of her every day life.
I encourage her to sustain her achievements and efforts against a disorder that has limited therapeutical options. Linda is a good exemple of the best fighters against degenerative disorders.
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