Huntington’s Disease And The Ways To Prevent Suffering

Huntington’s disease is a genetic neurodegenerative disorder that has a middle-age onset. It is clinically characterized by unwanted movements, behavioral and psychiatric disturbances, and dementia. George Huntington, who first described Huntington’s disease, named it “an insanity which leads to suicide” (Halpin, 2012). Individuals whom are at-risk or diagnosed with this disease stand in a tough situation in which many decide to commit suicide. There is major controversy on voluntary ways to die with this disease, which include to commit suicide, whether physician-assisted or individually, go under continuous deep sedation, or by euthanasia.

The symptoms of Huntington’s disease increase slowly and last until death. Chorea is one of the many motor problems associated with Huntington’s. These movements are unpredictable and increased by anxiety, stress, and strong emotions, all of which a person with Huntington’s feel as a result of the disease. Also, hypokinesia can be present in which movements are slowed and decreased altogether. Dystonic movements occur, such as twisting and turning of fingers and hands when walking or flexion and extension of back while sitting. Psychological and psychiatric symptoms include slow thinking, lost orientation to time and space, and dementia.

Depression is prevalent among those with Huntington’s disease, as it is one of the major symptoms. Rates of depression in neurological diseases are much higher than the general population because of both biological and reactive components, such as degradation of the brain and adjusting to life with a terminal illness. In a study by Paulsen et al. (2005), participants were administered the standardized Unified Huntington’s Disease Rating Scale (UHDRS) which assesses motor, cognitive, behavioral, and functional capacities. Each section has a series of tests and strategies in order to rank the individual. For example, the motor portion assesses eye movement, motor control, bradykinesia, dystonia, and gait; the cognitive portion tests verbal fluency, administers the Stroop Test and the Symbol Digit Modalities Test which incorporates attention, visuoperceptual processing, and working memory; the behavioral portion evaluates the frequency and severity of eleven separate psychiatric symptoms; the Total Functioning Capacity Scale is used to assess engagement in occupation, ability to handle financial affairs and perform daily activities, and the type of residential care provided. The scores are used as a basis to determine which stage of illness an individual is in. Of the five stages, depression peaks in stage two because of the transition to less independency and increased pathology of the basal ganglia. 50.3% of participants had sought treatment for depression in the past. Additionally, 40.5% reported a sad mood, 41% reported anxiety, and 25% reported low self-esteem.

Those affected by Huntington’s disease show hypometabolism in the prefrontal cortex and critical components of the frontal circuits. Depression is associated with dysfunction of frontal lobes and the disruption of circuits can cause major problems for all circuits. As the disease progresses depression is shown to decrease while apathy and affective blunting increase (Bates et al., 2014). Participants who were missing information regarding their mood on their Unified Huntington’s Disease Rating Scale were mostly those in the latter stages of the disease. The reasoning Paulsen et al. (2005) has behind the decrease in depression is that individuals may accept and adapt to their situation; a similar theory is that insight may become so distorted that the individual is unable to assess their disability. Suicide is a common cause of death in the Huntington disease community. According to Halpin (2012), suicide takes the lives of 9.3% to 13% of those diagnosed with or at-risk of the disease, making it the second to fifth leading cause of death. In comparison to the 1.5% rate of suicide in the general population, Huntington’s disease suicide accounts for up to twenty-three times more deaths. Suicide rates are higher in cases of Huntington’s disease than with any other neurodegenerative disease with the most critical periods of susceptibility being right before diagnosis and the transition between the different stages. Twenty people with the gene for the disease and ten caregivers were interviewed, all of which were family to the carrier gene. In the first step, the caregivers shared their opinion on suicide and were sympathetic towards their loved ones. Only one of the ten caregivers attributed suicide and suicide ideation to mental illness; others viewed it as a response to the realities of the disease. They also expressed strain between providing care and watching their loved one suffer without relief. Next, the twenty gene-carrying participants, three of which were undiagnosed, were interviewed. Because Huntington’s disease is genetic, some participants had already experienced suicide within their family. Whether or not they had wanted to commit suicide themselves, participants supported their family members’ decision. One told of the night his brother committed suicide via painless medication and described it as a happy moment for his family. However, controversy over whether suicide is an acceptable form of death is present. From a medical standpoint suicide is looked at as a reversible state of mind and an incorrect way to cope with the disease. Halpin (2012) argues that patients’ option to reject life-prolonging treatments is essentially the same as suicide because the outcome will inevitably be the same: a life cut short by the symptoms of a disease. Nonetheless, those who contemplate suicide are evaluated by a psychiatrist. The article states that those with Huntington’s disease are, “accorded all of the responsibility but relieved of the agency that is associated with rational suicide,.

Predictive testing for Huntington’s disease started in 1984. The disease is caused by a nucleotide sequence of cytosine-adenine-guanine in the gene IT-15 on chromosome 4. Repetition of this sequence more than thirty-six times results in Huntington’s disease with longer chains causing an earlier onset (Paulsen et al., 2005). The test searches for these repeats in order to inform the individual of their probability of developing the disease. There has been much controversy on the ethics of this test considering the high suicide rates that occur in those at-risk for and diagnosed with the disease. The results of predictive testing may precipitate depression, anxiety, family stress, suicide or attempted suicide, and psychiatric hospitalization. Surveys of attitudes toward predictive testing have been taken that show 11% to 15% of at-risk individuals willing to commit suicide if their risk increased. 4,527 participants were tested for the Huntington’s disease gene and afterward examined for the occurrence of any catastrophic events listed previously. 1,817 participants received an increased risk result, 2% or thirty-seven of which were followed by catastrophic events. This statistic is higher than the 0.3% of catastrophic events occurring for those with decreased- risk. At the time of the testing, twenty-four (54.5%) of those who had a catastrophic event following were already showing symptoms. A total of five women committed suicide after testing, twenty-one attempted suicide, while eighteen were hospitalized for psychiatric care. Still, the question of whether .97% of people experiencing a catastrophic event is worth the mass of others who may be alleviated of the worries of possibly having the disease.

Alternatives to suicide do exist, providing a painless and dignifying way for a patient to experience death. Physician-assisted suicide and euthanasia are popular options, however there are restrictions on how and when they may be used. These restrictions may make suicide seem like the better option to some with Huntington’s. Continuous deep sedation is a route that doctors may offer as part of palliative care. The World Health Organization aims for palliative care to not hasten nor prolong the dying process, but many times continuous deep sedation is combined with the withholding of fluids and nutrition. Applying continuous deep sedation while a patient is not in a terminal stage is against the Swedish and international recommendations. A study conducted in Sweden by Lindblad et al. was to determine if physicians and the public could accept continuous deep sedation as an alternative to physician-assisted suicide or euthanasia for a competent patient that is not imminently dying. A vignette was given out to participants describing a situation in which a patient in the early stages of Huntington’s disease requests physician-assisted suicide. Though the doctor denies, he offers continuous deep sedation which the patient declined. As the patient’s condition declines, she requests euthanasia and the doctor refuses. After being physically and mentally impaired, the family asks for euthanasia but when declined they settle for continuous deep sedation. Among physicians answering the questionnaire, 47% were supportive of both physician-assisted suicide and continuous deep sedation while 81% of the public were supportive of both. Questions about physician-assisted suicide were asked, such as if the patient is suffering should physicians be allowed to prescribe medication for the patient to end her own life. 31% of physicians and 58% of the public agreed with the statement. 18% of physicians and 69% of the public were in support of a doctor giving lethal injections to a competent patient who requests it. Surprisingly, 22% of physicians were in support of applying continuous deep sedation to a competent patient, though it is against current recommendations. From this study it is apparent that a large proportion of physicians and the public support more liberal views on continuous deep sedation than presently allowed. As an alternative to suicide, those suffering from Huntington’s disease have physician-assisted suicide, euthanasia, and continuous deep sedation as alternatives, however these may be hard to accomplish with laws in act.

In all, Huntington’s neurodegenerative disease causes depression and motor and cognition deterioration. Many who contract the disease contemplate suicide in the early stages or in stage two when losing their independency. Alternatives to suicide include physician-assisted suicide, continuous deep sedation, and euthanasia although they have restrictions and, in many cases, do not allow for the process on a competent patient who wants to prevent future suffering. Some with Huntington’s disease decide to voluntarily take their lives by suicide, however one day they may be able to use an alternative for a painless and justifiable way to prevent suffering.


16 December 2021
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