Palliative Care

Abstract

Palliative care (PC) has become an essential component of the treatment of neuromuscular patients, although the most published literature has been focused in ALS patients. They have been described some barriers for an appropriate utilization of PC in neuromuscular patients: Physicians have less experience with PC in noncancer patients; they associate PC with death and dying, or are afraid to diminish patients’ hope by introducing PC and patients associate PC with endof- life care. It is very important that patient and family members be involved in making decisions about the disease. This should be done when the patient’s functional status is still good and always after receiving adequate information about the different therapeutic alternatives. It is also very important to avoid making decisions in the course of an acute situation in the emergency department or in the intensive care unit. The PC approach have to be defined from a holistic point of view taking into account a series of therapeutic measures, such as pharmacological treatment, oxygen therapy, mechanical ventilation, respiratory physiotherapy, nutritional assessment, communication and emotional and spiritual support. We must learn to communicate the prognosis of the disease. All patients have the right to know the details about the disease they suffer from, but not everyone wants to know about it, and this should also be respected. Even if they want to know everything about the disease, patients always prefer the delicate truth, so one must act with tact and sensitivity. It is important to make them understand that all is not lost and that they are not alone in this hard process, that they will be accompanied not only by their family but also by the medical team.