O que fazer quando “não há o que fazer”?

Quando se fala em doenças neurológicas, é ainda bastante disseminado (mesmo entre outros profissionais da área da Saúde, médicos incluídos) um certo niilismo como expressado na citação da frase do portal do Inferno n’A Divina Comédia de Dante Alighieri (“Deixai, ó vós que entrais, toda a esperança” [“Lasciate ogni speranza, voi ch’entrate”]).

Nada mais falso.

Pois deve se lembrar que, independentemente da curabilidade (ou não) da doença em questão, que a função primordial da profissão médica sempre foi de interceder pelo bem-estar do(a) paciente. Bem-estar este, entretanto, num sentido muito mais de filosofia que de marketing e que se encontra implícito nos princípios da ética hipocrática e também na Bioética moderna (autonomia, beneficência, não-maleficência e justiça).

… As in all medical disciplines, many neurological diseases are, at present, “incurable.” This does not mean, however, that such diseases are not treatable and that nothing can be done to help the patient. Help that can be provided short of curing the disease ranges from treating the symptoms, to providing support for the patient and family, to end-of-life care. Healthcare professionals are so committed to the scientific understanding of diseases and their treatment that the natural tendency of the clinician is to feel guilty when confronted with a patient with an incurable disease. The number of neurological diseases that are curable or arrestable is constantly expanding thanks to research.

Help a Physician Can Provide to Patients with Any Disease

  • Curative treatment
  • Modification of disease progression/arrest of the disease
  • Symptomatic treatment (relief of symptoms / circumventing the effects of the disease)
  • Treatment of secondary effects of the disease (psychological / social / familial)
  • Definition of the prognosis
  • Genetic counseling
  • End-of-life care

Unfortunately, a physician who is fixated on the need to cure disease may simply strive to make the diagnosis of an as-yet incurable disease and then give no thought to patient management. Such a physician will tell the patient that he or she has an incurable disease, so coming back for further appointments is pointless (“diagnose and adios”). The aphorism to cure sometimes, to relieve often, to comfort always originated in the 1800s with Dr. Edward Trudeau, founder of a tuberculosis sanatorium. Any other attitude not only is an abrogation of the physician’s responsibility to care for the patient, but also leaves the patient without the many modalities of assistance that can be provided even to those with incurable diseases. (…) In fact, it usually is necessary to spend more time with the patient with an incurable disease than with one for whom effective treatment is available. In addition to providing all practical help available, the compassionate neurologist should share the grief and provide consolation for the patient and family; both are essential aspects of patient management.

(DAROFF, 2008.)

Certamente existem doenças neurológicas que não apresentam um tratamento curativo, mas mesmo nestas situações muito ainda pode ser feito nas questões do lidar com a irreversibilidade de seu estado e com o manejo do tratamento dos sintomas mais importantes para o paciente e os familiares (dor, agitação, confusão, dispneia, náuseas, entre outros). Tais ideias foram retomadas na atualidade através do trabalho de Cicely Saunders (1918 – 2005) no Hospital Saint Christopher por ela fundado em Londres em 1967 para cuidado dos pacientes ditos “terminais”.

Bibliografia:

Daroff, Robert B. et al. Management of Neurological Disease. In: Daroff, Robert B. et al (eds.) Bradley’s Neurology in Clinical Practice. Elsevier, 2008.

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