The symptoms of Huntington’s disease (HD) are evident for patients in their 30’s or 40’s. HD, however, begins at any age from infancy. The offspring of an affected parent has a 50% chance of HD transmittal. Huntington’s disease is autosomal dominant. By and large, HD is a progressive neurodegenerative genetic disorder. In contrast to cognitive symptoms, physical symptoms are the first observable signs of HD. Random and uncontrollable twitching called chorea is the most noticeable of these symptoms. Gradually, the patient’s cognitive power is impaired. HD is hereditary and incurable. Affected patients experience irreversible dementia leading to fatality. The only thing that they can do for now is to avail for genetic counseling to ease their level of discomfort and anxiety.
John is a lawyer in his 30’s. Several months ago, he noticed rapid movements twitching in his face. John then went to two neurologists and found out that he has Huntington’s disease. John’s mother died from that disease. He knows that he has ten years or so to live. The issue in John’s case is whether or not it is ethical, upon paralysis, to refuse future life-sustaining treatment. Whether or not John is in his right mind is also an issue here. Huntington’s disease affects the patient’s cognitive abilities. Despite the symptoms he unbearably experienced, John remains to be a productive lawyer. His productive work only shows that he is in his right mind. Moreover, John wrote a note before ingesting all his antidepressant medicine. Writing a note that states a clear message implies that the writer knows what he is doing. John, to my mind, is unquestionably competent in deciding what is good for him. His concept of good lies not in his biological good but rather in his perception of good. To die without life-sustaining treatment is what constitute good for John.
John’s psychiatrist refused to help him commit suicide. Well, that’s what psychiatrist is paid for: to help their patients live a normal life. At this point, one might challenge the credibility of John’s right mind. I would still say that John was in his right mind when he spoke those words. The fact that John reassured his psychiatrist that he do not have plans to commit suicide “any time soon” implies that he consciously knows what he is saying.
John’s case is comparable to cases concerning physician-assisted suicide or PAS. First, John has an incurable disease. Second, he expressed his refusal for a potential life-sustaining treatment. And third, John asked for his psychiatrist to help him commit suicide. In PAS, obviously, it is the physician who performs the procedure. The ethical problem that usually arises from Huntington disease involves the practice of genetic test. Confidentiality matters in the disclosure of a patient’s health condition. Also, it is questionable whether or not insurance companies and the like should compel its clients or employees to reveal their diseases. In addition, it is argued whether or not children with HD affected parents should undergo genetic test. The consensus is that the mentally-competent legal-age person should be the standard measure in allowing for genetic test.
What should be done for this patient? First, look and study John’s disease and see if that disease has a merit for permitting him to serve aid in dying. Evidently, John has undergone genetic counseling in vain. And second, give what John desires — namely, refusal for potential life-sustaining treatment. Let’s assume, for the sake of the argument, that John has a questionable competency to decide for himself. We know for a fact that Huntington’s disease gradually affects the cognitive and mental state of the affected patient. Thus, John’s mentality was corrupted by his very disease. HD plagues John’s right mind. In fact, his words and action were inconsistent.