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 develop and test a model for end-of-life decision making, with an emphasis on determining what role the patient would like to play in the process. Patients with terminal illnesses were interviewed regularly over a period of up to two years in an effort to gain insight into their control preferences.

The long-term goal is to enhance communication among the patient, family and healthcare provider. Read Study Abstract

Meet the Investigators

• Marie T. Nolan, PhD, RN, JHU School of Nursing
• Daniel P. Sulmasy, MD, PhD, The John J. Conley Department of Ethics, St. Vincent's Hospital, Manhattan, NY and The Bioethics Institute of New York Medical College
• Peter Browne Terry, MD, MA, JHU Phoebe R. Berman Bioethics Institute and JHU School of Medicine
• Joan Kub, PhD, RN, JHU School of Nursing
• Mark T. Hughes, MD, MA, JHU Phoebe R. Berman Bioethics Institute and JHU School of Medicine
• Linda Rose, PhD, RN, JHU School of Nursing
• Lora Clawson, MSN, RN, NP, JHU School of Medicine
• Richard Thompson, PhD, JHU School of Public Health
• Margaret Vettesse, PhD, RN, JHU School of Nursing
• Jane H. Forman, PhD, JHU 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 M.T., Hughes M.T., Kub, J., Terry P.B., Astrow A.B., Thompson R.E., et al. (2009). Development and validation of the family decision making self-efficacy scale, Palliative and Supportive Care. 7: 315-321. PMID: 19788773

• Astrow AB, Sood MT, Nolan MT, Terry PB, Clawson L, Kub J, Hughes MT, Sulmasy DP. (2008). Decision Making in Patients with Advanced Cancer Compared with Amyotrophic Lateral Sclerosis, Journal of Medical Ethics. 34(9):664-8.

• Nolan MT, Kub J, Hughes MT, Terry PB, Astrow AB, Carbo CA, J, Thompson RE, Clawson L, Sulmasy DP (2008). Family Health Care Decision Making and Self-Efficacy with Patients with ALS at the End of Life, Palliative and Supportive Care. 6, 273-280.

• Sulmasy DP, Hughes, MT, Thompson RE, Astrow AB, Terry PB, Kub J, Nolan MT, (2007) How would terminally ill patients have others make decisions for them in the event of decisional incapacity? A longitudinal study., Journal of the American Geriatric Society, 55(12):1981-8.

• Johnson JO, Sulmasy, DP & Nolan MT. (2007). Patients' experiences of being a burden on family in terminal illness. Journal of Hospice and Palliative Nursing. 9,5,264-269.

• Nolan, M.T., Hughes, M., Narendra, D. P., 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.

• 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.