title: Family health care decision making and self-efficacy with patients with ALS at the end of life.
abstract: OBJECTIVE
  Persons with ALS differ from those with other terminal illnesses in that they commonly retain capacity for decision making close to death. The role patients would opt to have their families play in decision making at the end of life may therefore be unique. This study compared the preferences of patients with ALS for involving family in health care decisions at the end of life with the actual involvement reported by the family after death.
  
  
  METHODS
  A descriptive correlational design with 16 patient-family member dyads was used. Quantitative findings were enriched with in-depth interviews of a subset of five family members following the patient's death.
  
  
  RESULTS
  Eighty-seven percent of patients had issued an advance directive. Patients who would opt to make health care decisions independently (i.e., according to the patient's preferences alone) were most likely to have their families report that decisions were made in the style that the patient preferred. Those who preferred shared decision making with family or decision making that relied upon the family were more likely to have their families report that decisions were made in a style that was more independent than preferred. When interviewed in depth, some family members described shared decision making although they had reported on the survey that the patient made independent decisions.
  
  
  CONCLUSIONS
  The structure of advance directives may suggest to families that independent decision making is the ideal, causing them to avoid or underreport shared decision making. Fear of family recriminations may also cause family members to avoid or underreport shared decision making. Findings from this study might be used to guide clinicians in their discussions of treatments and health care decision making with persons with ALS and their families.
authors.affiliation: School of Nursing, Berman Institute of Bioethics, Johns Hopkins University, Baltimore, Maryland 21205, USA. mnolan@son.jhmi.edu
authors.forename: Marie T
authors.initials: MT
authors.lastname: Nolan
authors.forename: Joan
authors.initials: J
authors.lastname: Kub
authors.forename: Mark T
authors.initials: MT
authors.lastname: Hughes
authors.forename: Peter B
authors.initials: PB
authors.lastname: Terry
authors.forename: Alan B
authors.initials: AB
authors.lastname: Astrow
authors.forename: Cynthia A
authors.initials: CA
authors.lastname: Carbo
authors.forename: Richard E
authors.initials: RE
authors.lastname: Thompson
authors.forename: Lora
authors.initials: L
authors.lastname: Clawson
authors.forename: Kenneth
authors.initials: K
authors.lastname: Texeira
authors.forename: Daniel P
authors.initials: DP
authors.lastname: Sulmasy
mesh_terms: D016223:Advance Directives; D000690:Amyotrophic Lateral Sclerosis / Q000523:psychology / Q000628:therapy*; D003657:Decision Making; D005190:Family / Q000523:psychology*; D005260:Female; D017051:Hospice Care; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D010166:Palliative Care / Q000379:methods*; D010358:Patient Participation; D013727:Terminal Care