When patients lack capacity: The roles that patients with terminal diagnoses would choose for their physicians and loved ones in making medical decisions

Marie T Nolan, Mark T Hughes, Derek Paul Narendra, Johanna R. Sood, Peter Browne Terry, Alan B. Astrow, Joan Kub, Richard Thompson, Daniel P. Sulmasy

Research output: Contribution to journalArticle

Abstract

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.

Original languageEnglish (US)
Pages (from-to)342-353
Number of pages12
JournalJournal of Pain and Symptom Management
Volume30
Issue number4
DOIs
StatePublished - Oct 2005

Fingerprint

Physicians
Decision Making
Clinical Ethics
Clinical Decision-Making
Religion
Health Status
Interviews

Keywords

  • Advance care planning
  • Decision making
  • End of life
  • Ethics

ASJC Scopus subject areas

  • Anesthesiology and Pain Medicine
  • Clinical Neurology
  • Neurology
  • Nursing(all)

Cite this

When patients lack capacity : The roles that patients with terminal diagnoses would choose for their physicians and loved ones in making medical decisions. / Nolan, Marie T; Hughes, Mark T; Narendra, Derek Paul; Sood, Johanna R.; Terry, Peter Browne; Astrow, Alan B.; Kub, Joan; Thompson, Richard; Sulmasy, Daniel P.

In: Journal of Pain and Symptom Management, Vol. 30, No. 4, 10.2005, p. 342-353.

Research output: Contribution to journalArticle

@article{92c1f8d7684542de82be5b46abcea413,
title = "When patients lack capacity: The roles that patients with terminal diagnoses would choose for their physicians and loved ones in making medical decisions",
abstract = "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.",
keywords = "Advance care planning, Decision making, End of life, Ethics",
author = "Nolan, {Marie T} and Hughes, {Mark T} and Narendra, {Derek Paul} and Sood, {Johanna R.} and Terry, {Peter Browne} and Astrow, {Alan B.} and Joan Kub and Richard Thompson and Sulmasy, {Daniel P.}",
year = "2005",
month = "10",
doi = "10.1016/j.jpainsymman.2005.04.010",
language = "English (US)",
volume = "30",
pages = "342--353",
journal = "Journal of Pain and Symptom Management",
issn = "0885-3924",
publisher = "Elsevier Inc.",
number = "4",

}

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 T

AU - Narendra, Derek Paul

AU - Sood, Johanna R.

AU - Terry, Peter Browne

AU - Astrow, Alan B.

AU - Kub, Joan

AU - Thompson, Richard

AU - Sulmasy, Daniel P.

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

VL - 30

SP - 342

EP - 353

JO - Journal of Pain and Symptom Management

JF - Journal of Pain and Symptom Management

SN - 0885-3924

IS - 4

ER -