Attitudes Toward Assisted Suicide and Life-Prolonging Measures in Swiss ALS Patients and Their Caregivers

Abstract

Objectives: In Switzerland, assisted suicide (AS) is legal, provided that the person seeking assistance has decisional capacity and the person assisting is not motivated by reasons of self-interest. However, in this particular setting nothing is known about patients’ and their caregivers’ attitudes toward AS and life-prolonging measures. Methods: Data was retrieved through validated questionnaires and personal interviews in 33 patients and their caregivers covering the following domains: physical function according to the revised Amyotrophic Lateral Sclerosis Functional Rating Scale (ALSFRS-R), demographic data, quality of life, anxiety, depression, social situation, spirituality, burden of disease, life-prolonging, and life-shortening acts. Results: In patients the median time after diagnosis was 9 months (2–90) and the median Amyotrophic Lateral Sclerosis (ALS) FRS-R score was 37 (22–48). The majority of patients (94%; n = 31) had no desire to hasten death. Patients’ and caregivers’ attitudes toward Percutaneous Endoscopic Gastrostomy (PEG) and Non-Invasive Ventilation (NIV) differed. Significantly more patients than caregivers (21.2 versus 3.1%) stated that they were against NIV (p = 0.049) and against PEG (27.3 versus 3.1%; p = 0.031). Answers regarding tracheotomy were not significantly different (p = 0.139). Caregivers scored significantly higher levels of “suffering” (p = 0.007), “loneliness” (p = 0.006), and “emotional distress” answering the questionnaires (p < 0.001). Suffering (p < 0.026) and loneliness (p < 0.016) were related to the score of the Hospital Anxiety and Depression Scale (HADS) in patients. Conclusion: A liberal legal setting does not necessarily promote the wish for AS. However, the desire to discuss AS is prevalent in ALS patients. There is a higher level of suffering and loneliness on the caregivers’ side. A longitudinal study is warranted.

Death with dignity in Washington patients with amyotrophic lateral sclerosis

“…18 A significant number of the ALS cohort did not take the medication, possibly using the prescription as a safeguard against continued loss of autonomy. Compared to the 9 patients in the Washington cohort who did not take the medication and died naturally of the disease, more patients who used the medication had bulbar onset, were more concerned about being a burden on family, caregiver, and friends, and were less religious, consistent with previous studies in patients with ALS reporting their wish to participate in either euthanasia or assisted suicide in both Europe 19 and the United States. 20 Despite the best efforts of experienced ALS clinicians, predicting a 6-month survival for patients with ALS is challenging.…”

Psychiatric disorders and their medical-social consequences in patients with amyotrophic lateral sclerosis and members of their families

“…14 It is quite obvious that both ALS patients and members of their families often need active psychological nursing and sometimes consultation of the psychiatrist or narcologist. 15 If a patient with ALS takes the drug Riluzole metabolized by cytochrome CYP2А1 and causing drug-induced hepatitis in 3-12% of cases, it is necessary that the patient have reduced the number of cigarettes a day, as smoking intensifies the work of this cytochrome, and abstained from strong alcoholic beverages for achievement of the maximal activity of the drug and minimization of adverse effects. 1,9 The analysis of correlation of frontotemporal cognitive, cognitive, bulbar disorders and administration of cholinolytics, which have not been earlier performed in the international and domestic literature, deserves special attention.…”

Mental disorders in patients with lateral amyotrophic sclerosis and their family members

“…Тревога приводит к существенному нарушению образа жизни с развитием злоупотребления лекарственными препарата-ми, отказу от сотрудничества с врачами и обращению к представителям нетрадиционной медицины. Все это сви-детельствует о том, что не только больные БАС, но и чле-ны их семей нуждаются в активном психологическом па-тронаже, в некоторых случаях консультации психиатра или нарколога [13,14].…”