Hostname: page-component-76fb5796d-5g6vh Total loading time: 0 Render date: 2024-04-25T22:07:41.777Z Has data issue: false hasContentIssue false
  • English
  • Français

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

Published online by Cambridge University Press:  28 July 2008

Marie T. Nolan ,
Joan Kub ,
Mark T. Hughes ,
Peter B. Terry ,
Alan B. Astrow ,
Cynthia A. Carbo ,
Richard E. Thompson ,
Lora Clawson ,
Kenneth Texeira  and
Daniel P. Sulmasy
Marie T. Nolan*
Affiliation:
School of Nursing, Berman Institute of Bioethics, Johns Hopkins University, Baltimore, Maryland
Joan Kub
Affiliation:
School of Nursing, Johns Hopkins University, Baltimore, Maryland
Mark T. Hughes
Affiliation:
School of Medicine, Berman Institute of Bioethics, Johns Hopkins University, Baltimore, Maryland
Peter B. Terry
Affiliation:
School of Medicine, Berman Institute of Bioethics, Johns Hopkins University, Baltimore, Maryland
Alan B. Astrow
Affiliation:
Division of Medical Oncology and Hematology, Maimonides Medical Center, Brooklyn, New York
Cynthia A. Carbo
Affiliation:
School of Nursing, Johns Hopkins University, Baltimore, Maryland
Richard E. Thompson
Affiliation:
Bloomberg School of Public Health, Johns Hopkins University Baltimore, Maryland
Lora Clawson
Affiliation:
School of Medicine, Johns Hopkins University, Baltimore, Maryland
Kenneth Texeira
Affiliation:
St. Vincent Catholic Medical Centers, New York, New York
Daniel P. Sulmasy
Affiliation:
St. Vincent Catholic Medical Centers, New York, New York New York Medical College, New York, New York
*
Address correspondence and reprint requests to: Marie T. Nolan, School of Nursing, Johns Hopkins University, 525 North Wolfe Street, Baltimore, MD 21205. E-mail: mnolan@son.jhmi.edu
Get access Rights & Permissions [Opens in a new window]

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.

Keywords

Decision makingEnd of lifeFamilyEthics
Type
Original Articles
Information
Palliative & Supportive Care , Volume 6 , Issue 3 , September 2008 , pp. 273 - 280
Copyright
Copyright © Cambridge University Press 2008

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

REFERENCES

Albert, S.M., Murphy, P.L., Del Bene, M.L., et al. (1999). A prospective study of treatment preferences and actual treatment choices in ALS. Neurology, 53, 278–283.CrossRefGoogle ScholarPubMed
Degner, L.F. & Sloan, J.A. (1992). Decision making during serious illness: What role do patients really want to play? Journal of Clinical Epidemiology, 45, 941–950.CrossRefGoogle ScholarPubMed
Andersen, P.M., Borasio, G.D., Dengler, R., et al. (2005). EFNS task force on management of amyotrophic lateral sclerosis: Guidelines for diagnosing and clinical care of patients and relatives. European Journal of Neurology, 12, 921–938.CrossRefGoogle ScholarPubMed
Erkinjuntti, T., Sulkava, R., Wikstrom, J., et al. (1987). Short Portable Mental Status Questionnaire as a screening test for dementia and delirium among the elderly. Journal of the American Geriatric Society, 35, 412–416.CrossRefGoogle ScholarPubMed
Ganzini, L., Johnston, W.S., & Silveira, M.J. (2002). The final month of life in patients with ALS. Neurology, 59, 428–431.CrossRefGoogle ScholarPubMed
Inouye, S.K., van Dyck, C.H., Alessi, C.A., et al. (1990). Clarifying confusion: The Confusion Assessment Method. A new method for detection of delirium. Annals of Internal Medicine, 113, 941–948.CrossRefGoogle Scholar
Krivickas, L.S., Shockley, L., & Mitsumoto, H. (1997). Home care of patients with amyotrophic laternal scierosis (ALS). Journal of Neurological Sciences, 152 (Suppl. 1), S82–S89.CrossRefGoogle Scholar
Martin, J. & Turnbull, J. (2001). Lasting impact in families after death in ALS. Amyotrophic Lateral Sclerosis and Other Motor Neuron Disorders, 2, 181–187.CrossRefGoogle Scholar
McSkimming, S., Hodges, M., Super, A., et al. (1999). The experience of life-threatening illness: Patients and their loved ones perspectives. Journal of Palliative Medicine, 2, 173–184.CrossRefGoogle ScholarPubMed
Moss, A.H., Oppenheimer, E.A., Casey, P., et al. (1996). Patients with amyotrophic lateral sclerosis receiving long-term mechanical ventilation. Chest, 110, 249–255.CrossRefGoogle ScholarPubMed
Nolan, M.T., Hughes, M., Narandra, D.P., Sood, J.R., Terry, P.B., Astrow, A.B. et al. (2005). When patients lack capacity: The roles that patients with terminal diagnoses would choose for their physicians and loved ones in making medical decisions. Journal of Pain and Symptom Management, 30, 342–353.CrossRefGoogle ScholarPubMed
Pajares, F. (2002). Overview of social cognitive theory of self-efficacy. Available at www.emory.edu/EDUCATION/mfp/eff.html. Retrieved Feb. 25, 2004.Google Scholar
Pfeiffer, E. (1975). A Short Portable Mental Status Questionnaire for the assessment of organic brain deficit in elderly patients. Journal of the American Geriatric Society, 23, 433–441.CrossRefGoogle Scholar
Sandelowski, M. (2000). Combining qualitative and quantitative sampling, data collection, and analysis techniques in mixed-methods studies. Research in Nursing & Health, 23, 246–255.3.0.CO;2-H>CrossRefGoogle Scholar