Family health care decision making and self-efficacy with patients with ALS at the end of life

Marie T Nolan, Joan Kub, Mark T Hughes, Peter Browne Terry, Alan B. Astrow, Cynthia Ann Carbo, Richard Thompson, Lora Clawson, Kenneth Texeira, Daniel P. Sulmasy

Research output: Contribution to journalArticle

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. Significance of results: 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.

Original languageEnglish (US)
Pages (from-to)273-280
Number of pages8
JournalPalliative & supportive care
Volume6
Issue number3
DOIs
StatePublished - Sep 2008

Fingerprint

Family Health
Self Efficacy
Decision Making
Delivery of Health Care
Advance Directives
Patient Preference
Fear

Keywords

  • Decision making
  • End of life
  • Ethics
  • Family

ASJC Scopus subject areas

  • Medicine(all)
  • Psychiatry and Mental health
  • Clinical Psychology
  • Nursing(all)

Cite this

Family health care decision making and self-efficacy with patients with ALS at the end of life. / Nolan, Marie T; Kub, Joan; Hughes, Mark T; Terry, Peter Browne; Astrow, Alan B.; Carbo, Cynthia Ann; Thompson, Richard; Clawson, Lora; Texeira, Kenneth; Sulmasy, Daniel P.

In: Palliative & supportive care, Vol. 6, No. 3, 09.2008, p. 273-280.

Research output: Contribution to journalArticle

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