During illness progression, the awareness of an emotionally safe “room”, offered by the psychologist, is a great resource for patients and caregivers, improving their quality of life. During counseling they can explore their needs, feel free to voice their emotions, guaranteeing a cathartic effect. People can be seen alone, with their partner or as a family. At the same time it is also possible to manage other practical troubles that cause personal, familiar, or social diseases, problems that could be unrelated to the apparition of ALS symptoms. Sometimes clinicians need to face pre-existent issues, for example couple problems, that interact with the new medical condition.
Spirituality and existential well-being issues may be addressed and explored in these interviews, with respect and the awareness that they are very powerful resources in the coping with illness and the shadow of death. It is sometimes useful for psychologists to send patients to a spiritual counselor, according to the patients’ beliefs (i.e., a priest, a monk, maybe a philosopher…).
The importance of spiritual care is usually underestimated (Lambert, 2006
). Spiritual care should encompass the whole family as a means of preventing complicated bereavement.
Throughout the course of the disease, a balance should be maintained by physicians between anticipating onsets of loss of functions and introducing life support measures, on the one hand, and respecting the patient's psychological state, life plans, and environment, on the other.
As far as patient worsens, he loses physical functions. Medical knowledge is unable to reverse this process, but it can offer auxiliaries to compensate, like walkers, manual wheelchairs, or power chairs. Many people look at these auxiliaries as a “painful goodbye” to their autonomy, a limitation of freedom. In a clinical relationship these feelings can be managed and elaborated.
Furthermore, ALS patients will, sooner or later, face the loss of speech and voice. Usually there is an initial decrease of speech volume, followed by a change in the voice, becoming more confused. This may be followed by complete loss of speech. In order to prevent devastating psychological and social consequences, patients and caregivers should access soon to other forms of communication. In addition to technological solutions, like computerized communicators, there are different ways to communicate, like hand signals, head nodding, sign language, etc. (Simmons, 2005
). The psychologist should facilitate the awareness that living without speech is not living without communicating. Furthermore, it is essential that caregiver–patient couple find a way to easily interact between them and this could be a task for psychologists.