Caring for patient with amyotrophic lateral sclerosis: ethical issues in the different phases of the disease.

Many changes have taken place in recent years both in the clinical practice and in the care of patients with amyotrophic lateral sclerosis (ALS), notwithstanding the persistent lack of effective pharmacologic treatments. These changes can be summed up as follows: a. at the clinical level: establishment of interdisciplinary ALS teams, availability of new treatment procedures able not to modify the prognosis but to prolong survival, greater interest in rehabilitation and chronic progressive disease; b. at the ethical level: growing importance of the principle of autonomy, development of new models of physician-patient relationship.

These factors have obliged healthcare professionals engaged in the care of ALS patients to confront new ethical issues that only a few years ago were considered totally unimaginable: 1. communication of the diagnosis and prognosis; 2. decision-making in the more advanced phases of the disease; 3. accompaniment of the patient during death and dying.

Each ethical issue is discussed in detail, and the following conclusions are drawn:

1. in all key moments of ALS patient care, the giving of correct information to the patient and good communication skills on behalf of the physician are fundamental elements to ensure that clinical management avoids, in the patient, risks of self-injurious behaviour or escape to alternative medicine and, in the physician, risks of therapeutic withdrawal, decisional anguish or burn out;

2. it is essential to develop new models of physician-patient relationship, different from those of a paternalistic type, but also different from those of a contractual or utilitarian type;

3. respect for the principle of autonomy and for the instruments which derive from it (informed consent and advance directives, in particular) constitute certainly an important element but are not the only ethical tèlos of the physician's act, which should always be inspired also by the principle of beneficence;

4. pharmaco-protected accompaniment of the patient during death and dying, in an atmosphere of attentive presence and elevated relational expertise in accordance with an ethics of virtues and "good intention", may represent a third way between the two opposite ethical errors of euthanasia and over-treatment, a third way that transcends the ancient polemics between different religious or moral tenets, and appears more in line with paradigms universally accepted and acceptable.