Suffering and the request for assisted suicide by amyotrophic lateral sclerosis patients

Abstract

Amyotrophic Lateral Sclerosis, better known as ALS, is a deadly neurological disease characterized by the degeneration of all the upper and lower motor neurons around ones’ body. Patients suffering from this disease will primarily complain of weakness in the hand muscles developing in a progression weakness in the remaining limbs, dysarthria and later also dysphagia. Loss of weight and muscle atrophy is also very common to result by time. All patients become wheelchair bound leaving them dependent on their family and friends. Sensory and mental functions are, however, very well preserved. Respiratory failure is the predominant cause of death unless ventilator support is provided in the end stage of the disease. When the disease starts to progress, secondary symptoms arise causing more problems to the patients. Although not in all patients, pain can occur in certain individuals suffering from the disease. As this is not seen in all patients, pain is the most understudied and underestimated in all ALS patients.In the present day, more questions are being asked in relation to end-of-life issues in patients having terminal conditions like ALS patients. Increasing awareness in Malta throughout these last years resulted in the writer thinking more about end-of-life issues in patients having ALS. In the first chapter of this dissertation the writer will study the effect of pain and suffering on ALS patients. The moral aspects in suffering and the quality of life in suffering will be identified to see how these can effect end-of-life decisions made by the patients suffering from ALS, together with their relatives. The second chapter will discuss different reasons why persons with ALS will ask for assisted suicide. Ethical considerations about assisted suicide will be studied further. The third chapter will discuss the importance of having good access to palliative and how can palliative care help patients having ALS in relation to assisted suicide.