Palliative Sedation and What Constitutes Active Dying: A Case of Severe Progressive Dystonia and Intractable Pain

Jacob J. Strand, Molly A. Feely, Neha M. Kramer, Susan M. Moeschler, Keith M. Swetz

Research output: Contribution to journalArticle

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.

Original languageEnglish (US)
Pages (from-to)363-368
Number of pages6
JournalAmerican Journal of Hospice and Palliative Medicine
Volume33
Issue number4
DOIs
StatePublished - May 1 2016

Keywords

  • active dying
  • artificial nutrition and hydration
  • central pain syndrome
  • deep brain stimulation
  • dystonia
  • end of life
  • medical ethics
  • palliative sedation

ASJC Scopus subject areas

  • Medicine(all)

Fingerprint Dive into the research topics of 'Palliative Sedation and What Constitutes Active Dying: A Case of Severe Progressive Dystonia and Intractable Pain'. Together they form a unique fingerprint.

  • Cite this