Palliative Care for its Spiritual Pain of individuals living with neurological intractable illnesses

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The purpose of this study was to identify the psychological state of individuals living with progressive neuromuscular illnesses and explore how to provide them with palliative care. There were four parts to the study, and they were performed to obtain data concerning : 1) the illness experience of individuals living with amyotrophic lateral sclerosis at the onset of symptoms, in the pre-diagnostic phase, and in the phase immediately after diagnosis ; 2) the illness experience of individuals living with various MNDs for more than ten years ; 3) counseling needs at the medical-counseling clinic ; and 4) the psychological distress of home care nurses.As a result, six domains and twelve categories of psychological distress were identified in the patients. The domain <Somatic symptoms and difficulties in their daily lives> seemed to lead to the rest of domains of psychological distresses. Ten categories corresponding to the six domains of their psychological distresses were extracted as reflecting to mental support of the patients. It became evident that the psychological state of the patients fluctuates with the severity of the distress and the degree of mental support that they feel.The findings in this study suggest the following :1. It is important to understand patients' complex and diverse psychological condition and make them feel secure and supported. Nurses and other health care providers should first perform psychological assessment and then offer necessary information and engage in counseling in a manner suitable for each patient.2. Nurses should first try direct approaches toward resolving somatic symptoms and difficulties in their own daily lives. Then nurses should work together with patients and their family to find mental support, and to transform psychological distress into mental support as means of palliative care.