Background From the beginning and during the disease the ALS patients have to take difficult decisions about care and end of life. A sensible and open communication among patient and clinicians is an indispensable tool to ensure the freedom of choice and the recognition of the responsibility for everyone. Any intervention by the health professionals cannot forget the clinical complexity and the subjectivity of the patients who exercises their rights to know and to choose among technology opportunities. The aim of the study is to identify those elements that influence the patient’s choices.
Methods We examined 200 ALS patients taking care by palliative multidisciplinary team for 18 months about: withholding and withdrawing vital supports, mobility and communication aids, rehabilitation care and dying setting. We registered the respect for advance directives, the changing’s patients minds, the making informed choices, the clinicians attitudes about care planning and communication disability.
Results For every choice the decision making involves scientific aspects, patient’s quality of life, and community resources too. We showed that the choices are often not real free but depending on the clinicians’ point of view, the availability of high technology aids and the clinician-patient communication skills.
Conclusion The negotiation is the new aspect of the physician-patient relationship founded on empathy, respect and recognition of different competences. The clinician’ ethical-clinical reasoning could be a useful tool to improve the patient ability to choose on difficult clinical situations.
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