Literature DB >> 21242368

Lost in translation: the unintended consequences of advance directive law on clinical care.

Lesley S Castillo1, Brie A Williams, Sarah M Hooper, Charles P Sabatino, Lois A Weithorn, Rebecca L Sudore.   

Abstract

BACKGROUND: Advance directive law may compromise the clinical effectiveness of advance directives.
PURPOSE: To identify unintended legal consequences of advance directive law that may prevent patients from communicating end-of-life preferences. DATA SOURCES: Advance directive legal statutes for all 50 U.S. states and the District of Columbia and English-language searches of LexisNexis, Westlaw, and MEDLINE from 1966 to August 2010. STUDY SELECTION: Two independent reviewers selected 51 advance directive statutes and 20 articles. Three independent legal reviewers selected 105 legal proceedings. DATA EXTRACTION: Two reviewers independently assessed data sources and used critical content analysis to determine legal barriers to the clinical effectiveness of advance directives. Disagreements were resolved by consensus. DATA SYNTHESIS: Legal and content-related barriers included poor readability (that is, laws in all states were written above a 12th-grade reading level), health care agent or surrogate restrictions (for example, 40 states did not include same-sex or domestic partners as default surrogates), and execution requirements needed to make forms legally valid (for example, 35 states did not allow oral advance directives, and 48 states required witness signatures, a notary public, or both). Vulnerable populations most likely to be affected by these barriers included patients with limited literacy, limited English proficiency, or both who cannot read or execute advance directives; same-sex or domestic partners who may be without legally valid and trusted surrogates; and unbefriended, institutionalized, or homeless patients who may be without witnesses and suitable surrogates. LIMITATION: Only appellate-level legal cases were available, which may have excluded relevant cases.
CONCLUSION: Unintended negative consequences of advance directive legal restrictions may prevent all patients, and particularly vulnerable patients, from making and communicating their end-of-life wishes and having them honored. These restrictions have rendered advance directives less clinically useful. Recommendations include improving readability, allowing oral advance directives, and eliminating witness or notary requirements. PRIMARY FUNDING SOURCE: U.S. Department of Veterans Affairs and the Pfizer Foundation.

Entities:  

Mesh:

Year:  2011        PMID: 21242368      PMCID: PMC3124843          DOI: 10.7326/0003-4819-154-2-201101180-00012

Source DB:  PubMed          Journal:  Ann Intern Med        ISSN: 0003-4819            Impact factor:   25.391


  45 in total

1.  A comparison of state advance directive documents.

Authors:  Gail Gunter-Hunt; Jane E Mahoney; Carol E Sieger
Journal:  Gerontologist       Date:  2002-02

2.  Shared decision making: the ethics of caring and best respect.

Authors:  Joseph E Beltran
Journal:  Bioethics Forum       Date:  1996

3.  Medical decision-making for the unbefriended nursing home resident.

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Journal:  J Ethics Law Aging       Date:  1995 Fall-Winter

4.  End-of-life decision making: a qualitative study of elderly individuals.

Authors:  K E Rosenfeld; N S Wenger; M Kagawa-Singer
Journal:  J Gen Intern Med       Date:  2000-09       Impact factor: 5.128

Review 5.  Moral justifications for surrogate decision making in the intensive care unit: implications and limitations.

Authors:  Robert M Arnold; John Kellum
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Review 6.  Palliative care in African American communities.

Authors:  Lavera M Crawley
Journal:  J Palliat Med       Date:  2002-10       Impact factor: 2.947

Review 7.  Health literacy and cancer communication.

Authors:  Terry C Davis; Mark V Williams; Estela Marin; Ruth M Parker; Jonathan Glass
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8.  Redefining the "planning" in advance care planning: preparing for end-of-life decision making.

Authors:  Rebecca L Sudore; Terri R Fried
Journal:  Ann Intern Med       Date:  2010-08-17       Impact factor: 25.391

9.  Advance care planning.

Authors:  Russ C Kolarik; Robert M Arnold; Gary S Fischer; Barbara H Hanusa
Journal:  J Gen Intern Med       Date:  2002-08       Impact factor: 5.128

10.  Closing the loop: physician communication with diabetic patients who have low health literacy.

Authors:  Dean Schillinger; John Piette; Kevin Grumbach; Frances Wang; Clifford Wilson; Carolyn Daher; Krishelle Leong-Grotz; Cesar Castro; Andrew B Bindman
Journal:  Arch Intern Med       Date:  2003-01-13
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  23 in total

1.  Ethical Concerns and Procedural Pathways for Patients Who are Incapacitated and Alone: Implications from a Qualitative Study for Advancing Ethical Practice.

Authors:  Jennifer Moye; Casey Catlin; Jennifer Kwak; Erica Wood; Pamela B Teaster
Journal:  HEC Forum       Date:  2017-06

2.  Living Wills: One Part of the Advance Care Planning Puzzle.

Authors:  Daniel David; Ryan D McMahan; Rebecca L Sudore
Journal:  J Am Geriatr Soc       Date:  2018-12-03       Impact factor: 5.562

3.  Reversing Racial Inequities at the End of Life: A Call for Health Systems to Create Culturally Competent Advance Care Planning Programs Within African American Communities.

Authors:  Randi Belisomo
Journal:  J Racial Ethn Health Disparities       Date:  2017-04-13

4.  Patients with next-of-kin relationships outside the nuclear family.

Authors:  Andrew B Cohen; Mark Trentalange; Terri Fried
Journal:  JAMA       Date:  2015-04-07       Impact factor: 56.272

5.  Persistent problems in end-of-life planning among young- and middle-aged American couples.

Authors:  Sara M Moorman; Megumi Inoue
Journal:  J Gerontol B Psychol Sci Soc Sci       Date:  2012-11-12       Impact factor: 4.077

6.  Licensing Surrogate Decision-Makers.

Authors:  Philip M Rosoff
Journal:  HEC Forum       Date:  2017-06

Review 7.  The Voice Is As Mighty As the Pen: Integrating Conversations into Advance Care Planning.

Authors:  Kunal Bailoor; Leslie H Kamil; Ed Goldman; Laura M Napiewocki; Denise Winiarski; Christian J Vercler; Andrew G Shuman
Journal:  J Bioeth Inq       Date:  2018-03-17       Impact factor: 1.352

8.  Improving Medical-Legal Advance Care Planning.

Authors:  Sarah Hooper; Charles P Sabatino; Rebecca L Sudore
Journal:  J Pain Symptom Manage       Date:  2020-03-30       Impact factor: 3.612

9.  Guardianship and End-of-Life Decision Making.

Authors:  Andrew B Cohen; Megan S Wright; Leo Cooney; Terri Fried
Journal:  JAMA Intern Med       Date:  2015-10       Impact factor: 21.873

10.  Advance care planning beyond advance directives: perspectives from patients and surrogates.

Authors:  Ryan D McMahan; Sara J Knight; Terri R Fried; Rebecca L Sudore
Journal:  J Pain Symptom Manage       Date:  2012-11-27       Impact factor: 3.612

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