title: Palliative Sedation and What Constitutes Active Dying: A Case of Severe Progressive Dystonia and Intractable Pain.
abstract: We present the case of a 34-year-old woman with Klippel-Feil syndrome who developed progressive generalized dystonia of unclear etiology, resulting in intractable pain despite aggressive medical and surgical interventions. Ultimately, palliative sedation was required to relieve suffering. Herein, we describe ethical considerations including defining sedation, determining prognosis in the setting of an undefined neurodegenerative condition, and use of treatments that concurrently might prolong or alter end-of-life trajectory. We highlight pertinent literature and how it may be applied in challenging and unique clinical situations. Finally, we discuss the need for expert multidisciplinary involvement when implementing palliative sedation and illustrate that procedures and rules need to be interpreted to deliver optimal patient-centered plan of care.
authors.affiliation: Division of General Internal Medicine, Department of Medicine, Section of Palliative Medicine, Mayo Clinic, Rochester, MN, USA strand.jacob@mayo.edu.
authors.forename: Jacob J
authors.initials: JJ
authors.lastname: Strand
authors.affiliation: Division of General Internal Medicine, Department of Medicine, Section of Palliative Medicine, Mayo Clinic, Rochester, MN, USA.
authors.forename: Molly A
authors.initials: MA
authors.lastname: Feely
authors.affiliation: Division of General Internal Medicine, Department of Medicine, Section of Palliative Medicine, Mayo Clinic, Rochester, MN, USA.
authors.forename: Neha M
authors.initials: NM
authors.lastname: Kramer
authors.affiliation: Division of Pain Medicine Mayo Clinic, Department of Anesthesiology, Rochester, MN, USA.
authors.forename: Susan M
authors.initials: SM
authors.lastname: Moeschler
authors.affiliation: Division of General Internal Medicine, Department of Medicine, Section of Palliative Medicine, Mayo Clinic, Rochester, MN, USA.
authors.forename: Keith M
authors.initials: KM
authors.lastname: Swetz
mesh_terms: D000328:Adult; D004421:Dystonia / Q000188:drug therapy*; D005260:Female; D006801:Humans; D006993:Hypnotics and Sedatives / Q000008:administration & dosage / Q000627:therapeutic use*; D007714:Klippel-Feil Syndrome / Q000150:complications; D010148:Intractable Pain / Q000188:drug therapy* / Q000209:etiology; D010166:Palliative Care / Q000941:ethics / Q000379:methods*; D010288:Parenteral Nutrition / Q000379:methods; D017410:Practice Guidelines as Topic; D013315:Stress, Psychological / Q000188:drug therapy*; D013727:Terminal Care / Q000941:ethics / Q000379:methods*
chemical_list: D006993:Hypnotics and Sedatives
keywords: active dying; artificial nutrition and hydration; central pain syndrome; deep brain stimulation; dystonia; end of life; medical ethics; palliative sedation