NATURAL HISTORY OF
END-OF-LIFE DECISION MAKING

Illustration by Annie Bissett

National Institute of Nursing Research
National Institutes of Health
R01 NR005224
Direct Costs: $1,004,849
2001–2005

The purpose of this study is to construct and test a model of end-of-life decision making with a focus on the decision control preferences of patients with terminal illnesses.

This information will provide an in-depth understanding of the natural history of end-of- life decision making and can be used to enhance patient/family provider communication and provide health care consistent with patient/family values. Read Study Abstract

Meet the Investigators

Principal Investigator: Marie T. Nolan, PhD, RN^1,2
Co-Investigator: Daniel P. Sulmasy, MD, PhD³
Co-Investigator: Peter Browne Terry, MD, MA^2,4
Co-Investigator : Joan Kub, PhD, RN¹
Co-Investigator: Mark T. Hughes, MD, MA^2,4
Co-Investigator : Alan Astrow, MD³
Co-Investigator Lora Clawson, MSN, RN, NP⁴
Co-Investigator: Richard Thompson, PhD⁵
Co-Investigator : Margaret Vettesse, PhD, RN¹
Co-Investigator: Jane H. Forman, PhD⁵

1  Johns Hopkins University School of Nursing
2  Phoebe R. Berman Bioethics Institute, Johns Hopkins University
3 The John J. Conley Department of Ethics, St. Vincent's Hospital, Manhattan, NY and
   The Bioethics Institute of New York Medical College, Valhalla, NY
4  Johns Hopkins University School of Medicine
5  Johns Hopkins University Bloomberg School of Public Health

Method

We modified the Decision Control Preference Scale of Degner and Sloan (1992) to measure the amount of control over end-of-life decisions that patients prefer to retain or place with the physician and/or family. Decision control preferences will be examined every three months for two years in 101 patients with terminal illnesses who have a prognosis of approximately two years of life. Patients will be followed from early in the diagnostic period for two years or until death.

The illnesses selected are characterized by a steady progression towards death (amyotrophic lateral sclerosis, (ALS) and Lung cancer) and an unpredictable course and sudden death (heart failure). This longitudinal, multimethod study is based on an eclectic conceptual approach, and The Patient Decision Making Framework, that includes the findings of Degner and others.

All subjects will be evaluated with quantitative measures and a subset of five subjects in each disease group will also be interviewed with qualitative measures. Data will be analyzed to determine the influence of selected demographic, psychosocial, and health characteristics on decision control preferences and the decision control preferences of patients over time.

Publications

Nolan MT, Hughes M, Narendra DP, Sood JR, Terry PB, Astrow AB, Kub J, Thompson RE, Sulmasy DP. (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(4):342-353.

Kub, J. E., Nolan, M. T., Hughes, M. T., Terry, P. B., Sulmasy, D. P., Astrow, A., & Forman, J. H. (2003). Religious importance and practices of patients with a life- threatening illness: Implications for screening protocols. Applied Nursing Research, 16, 196-200.