End-of-life management in patients with amyotrophic lateral sclerosis.
Most health-care professionals are trained to promote and maintain life and often have difficulty when faced with the often rapid decline and death of people with terminal illnesses such as amyotrophic lateral sclerosis (ALS). By contrast, data suggest that early and open discussion of end-of-life issues with patients and families allows time for reflection and planning, can obviate the introduction of unwanted interventions or procedures, can provide reassurance, and can alleviate fear. Patients' perspectives regarding end-of-life interventions and use of technologies might differ from those of the health professionals involved in their care, and health-care professionals should recognise this and respect the patient's autonomy. Advance care directives can preserve autonomy, but their legal validity and use varies between countries. Clinical management of the end of life should aim to maximise quality of life of both the patient and caregiver and, when possible, incorporate appropriate palliation of distressing physical, psychosocial, and existential distress. Training of health-care professionals should include the development of communication skills that help to sensitively manage the inevitability of death. The emotional burden for health-care professionals caring for people with terminal neurological disease should be recognised, with structures and procedures developed to address compassion, fatigue, and the moral and ethical challenges related to providing end-of-life care.
Academic Unit of Neurology, Trinity College Dublin, Trinity Biomedical Sciences Institute, 152-160 Pearse Street, Dublin 2, Republic of Ireland. Electronic address: sheelahconnolly@gmail.com.
Sheelah
S
Connolly
School of Nursing and Human Sciences, Dublin City University, Glasnevin, Dublin 9, Republic of Ireland.
Miriam
M
Galvin
Academic Unit of Neurology, Trinity College Dublin, Trinity Biomedical Sciences Institute, 152-160 Pearse Street, Dublin 2, Republic of Ireland; Department of Neurology, Beaumont Hospital, Beaumont Road, Dublin 9, Republic of Ireland.
Orla
O
Hardiman
D016223:Advance Directives; D000690:Amyotrophic Lateral Sclerosis / Q000523:psychology; D001293:Attitude to Death; D017028:Caregivers / Q000523:psychology; D002983:Clinical Competence; D003071:Cognition; D003142:Communication; D003657:Decision Making / Q000941:ethics; D004501:Education, Medical / Q000592:standards / Q000639:trends*; D004645:Empathy; D005060:Europe / Q000453:epidemiology; D006282:Health Personnel / Q000193:education / Q000941:ethics / Q000523:psychology / Q000592:standards; D017051:Hospice Care / Q000941:ethics / Q000706:statistics & numerical data; D006801:Humans; D016743:Mental Competency; D010166:Palliative Care / Q000941:ethics / Q000706:statistics & numerical data; D026684:Personal Autonomy; D011788:Quality of Life; D013315:Stress, Psychological / Q000209:etiology / Q000517:prevention & control*; D017236:Suicide, Assisted / Q000941:ethics / Q000706:statistics & numerical data; D013727:Terminal Care / Q000941:ethics / Q000706:statistics & numerical data; D014481:United States / Q000453:epidemiology