TY - JOUR
T1 - When patients lack capacity
T2 - The roles that patients with terminal diagnoses would choose for their physicians and loved ones in making medical decisions
AU - Nolan, Marie T.
AU - Hughes, Mark
AU - Narendra, Derek Paul
AU - Sood, Johanna R.
AU - Terry, Peter B.
AU - Astrow, Alan B.
AU - Kub, Joan
AU - Thompson, Richard E.
AU - Sulmasy, Daniel P.
N1 - Funding Information:
The authors thank the following individuals for their assistance with data collection: Lora Clawson, Jennifer Horner, and Leana Rogers. They also gratefully acknowledge the generous financial support of the Fan Fox and Leslie R. Samuels Foundation through a grant administrated by Partnership for Caring; a grant from the National Institute for Nursing Research (1 R01 NR005224-01A1); and the support of the ALS Research Center of The Johns Hopkins University.
PY - 2005/10
Y1 - 2005/10
N2 - Current approaches to end-of-life decision making are widely considered inadequate. We explored these complexities by examining how patients with terminal diagnoses would choose to involve their physicians and loved ones in making medical decisions, assuming they were able and unable to participate. Cross-sectional interviews of 130 patients recently diagnosed with fatal conditions were conducted. Patients were recruited from two academic medical centers using a modification of the Decision Control Preferences Scale, ranging from independent decision making to decision making that relies upon others. Patients were asked how they would balance their own wishes relative to the input of physician and loved ones in making medical decisions, and to weigh the input of loved ones relative to physician. Most patients (52%), assuming they had the capacity, would opt to share decision making with their physicians, but 15% would defer to their physicians and 34% would make decisions independently. Similarly, 44% would share decision making with their loved ones, but fewer (6%) would defer to their loved ones. Thirty-nine percent would rely upon their physicians' judgments about what would be best for them rather than their own wishes if they became unconscious, compared with 15% who would do so if they were conscious (P < 0.001). Nonetheless, patients were more likely to weigh their loved ones' input more heavily than their physicians' input if they were unconscious (33%) than if they were conscious (7%, P = 0.05). Race, religion, gender, diagnosis, and health status were largely unassociated with patients' decision control preferences. Patients with terminal diagnoses report a wide diversity of decision control preferences, but most would opt to share decision making with their physicians and loved ones. If unable to decide for themselves, they shift toward greater reliance on physician input relative to their own wishes but would weigh loved ones' input more heavily than physician input. Deciding for patients who cannot speak for themselves may be more complex than has previously been reflected in law, policy, or clinical ethics.
AB - Current approaches to end-of-life decision making are widely considered inadequate. We explored these complexities by examining how patients with terminal diagnoses would choose to involve their physicians and loved ones in making medical decisions, assuming they were able and unable to participate. Cross-sectional interviews of 130 patients recently diagnosed with fatal conditions were conducted. Patients were recruited from two academic medical centers using a modification of the Decision Control Preferences Scale, ranging from independent decision making to decision making that relies upon others. Patients were asked how they would balance their own wishes relative to the input of physician and loved ones in making medical decisions, and to weigh the input of loved ones relative to physician. Most patients (52%), assuming they had the capacity, would opt to share decision making with their physicians, but 15% would defer to their physicians and 34% would make decisions independently. Similarly, 44% would share decision making with their loved ones, but fewer (6%) would defer to their loved ones. Thirty-nine percent would rely upon their physicians' judgments about what would be best for them rather than their own wishes if they became unconscious, compared with 15% who would do so if they were conscious (P < 0.001). Nonetheless, patients were more likely to weigh their loved ones' input more heavily than their physicians' input if they were unconscious (33%) than if they were conscious (7%, P = 0.05). Race, religion, gender, diagnosis, and health status were largely unassociated with patients' decision control preferences. Patients with terminal diagnoses report a wide diversity of decision control preferences, but most would opt to share decision making with their physicians and loved ones. If unable to decide for themselves, they shift toward greater reliance on physician input relative to their own wishes but would weigh loved ones' input more heavily than physician input. Deciding for patients who cannot speak for themselves may be more complex than has previously been reflected in law, policy, or clinical ethics.
KW - Advance care planning
KW - Decision making
KW - End of life
KW - Ethics
UR - http://www.scopus.com/inward/record.url?scp=27344447234&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=27344447234&partnerID=8YFLogxK
U2 - 10.1016/j.jpainsymman.2005.04.010
DO - 10.1016/j.jpainsymman.2005.04.010
M3 - Article
C2 - 16256898
AN - SCOPUS:27344447234
SN - 0885-3924
VL - 30
SP - 342
EP - 353
JO - Journal of Pain and Symptom Management
JF - Journal of Pain and Symptom Management
IS - 4
ER -