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Título

UNVEILING CONFLICTING OPINIONS ABOUT AUTONOMY, END-OF-LIFE DECISIONS AND MEDICAL MANAGEMENT OF AMYOTROPHIC LATERAL SCLEROSIS (ALS): RESULTS FROM A SURVEY IN 3 CITIES FROM THE STATE OF CEARÁ

Resumo

Background: ALS is an irreversible neurodegenerative disorder. End-of-life decisions vary
according to cultural perspectives about the limits of medical treatment. In Brazil, assisted
suicide and euthanasia are illegal and the boundaries of patient’s autonomy for decisions are
not precise. Objective: To evaluate the opinions of the educated general population about
different medical decisions related to management of ALS patients. Method: Presential
written opinion survey conducted with unidentified volunteers (minimum education: complete
High school) after signing informed consent with demographic data collection, pre-test
teaching about the subject and 4 case simulations. Results: 510 volunteers, age 28.9+12.6
years (range 18-89), 50.7% female, 18.5% married. 45.4% were for-, 35.7% against
euthanasia. 71.8% were for-, 11.5% against orthothanasia. 15.2 % were for-, 63.8%
against dysthanasia. In situation 1 (ALS patient requested the medical team not to undergo
gastrostomy that would increase life expectancy from 3 to 36 months): 17.1% considered
this suicide, 64.1% orthothanasia, 7.1% euthanasia done by family and 2.6% murder by
either physician/family. If the ALS patient was restricted to a wheelchair (situation 2), only
5.9% considered refusal suicide but 5.5 and 5.7 considered murder by family or physician,
5.9% medical malpractice. However, if the same patient suffered from severe depression
(under treatment) and required gastrostomy and tracheostomy but declined (situation 3):
47.2% considered this suicide, 53.8% orthothanasia, 18.4% euthanasia, 9.1 and 5.8%
murder by family or physician, 20.7% failure to provide adequate medical assistance, 12.9%
medical malpractice. In situation 4, a 40-year-old patient who progressed to “vegetative
state” after cardiac arrest had previously informed that she would refuse CPR/aggressive
treatments if severely disabled. Following her wishes, her family refused to allow
hemodialysis. The patient died. 6.9% considered this suicide, 74.3% considered
orthothanasia, 19.3% euthanasia, 14.1% considered failure to provide adequate medical
assistance. Conclusion: In this educated general population from 3 cities of Ceará
(Fortaleza, Crajubar, Sobral), after prior teaching, there is great confusion about physician’s
role, patient’s autonomy/rights, euthanasia and end-of-life decisions. A large % of
respondents considered accepting patient’s autonomy the same as allowance of suicide,
euthanasia, murder or malpractice.

Palavras Chave

AMYOTROPHIC LATERAL SCLEROSIS, END-OF-LIFE DECISIONS, PALLIATIVE CARE

Área

Doenças do Neurônio Motor – Esclerose Lateral Amiotrófica