Lesley S. Castillo, BA; Brie A. Williams, MD; Sarah M. Hooper, JD; Charles P. Sabatino, JD; Lois A. Weithorn, PhD, JD; Rebecca L. Sudore, MD
Acknowledgment: The authors thank Desa Sanders, JD, and Heather Landis, JD, for their assistance with legal research and analysis.
Grant Support: Ms. Castillo and Dr. Sudore are supported by a Veterans Affairs Career Development Award and a Pfizer Fellowship in Clear Health Communication. Ms. Hooper is supported by the University of California, Hastings College of the Law.
Potential Conflicts of Interest: Dr. Williams: Grants received (money to institution): National Institutes of Health and University of California, San Francisco, Hartford Foundation Center of Excellence; Consultancy: Independent Medical Monitor of Michigan and Disability Legal Rights Center of Southern California; Expert testimony: University of Denver Student Law Office, Hunton & Williams LLP, and Holland & Knight LLP. Ms. Hooper: Consulting fee or honorarium (money to institution): Department of Veterans Affairs; Payment for writing or reviewing the manuscript (money to institution): Department of Veterans Affairs. Dr. Sudore: Grants received (money to institution): Pfizer Foundation. Disclosures can also be viewed at www.acponline.org/authors/icmje/ConflictOfInterestForms.do?msNum=M10-1985.
Requests for Single Reprints: Rebecca L. Sudore, MD, San Francisco Veterans Affairs Medical Center, 4150 Clement Street, 151R, San Francisco, CA 94121; e-mail, Rebecca.Sudore@ucsf.edu.
Current Author Addresses: Ms. Castillo: San Francisco Veterans Affairs Medical Center, 4150 Clement Street, 181G, San Francisco, CA 94121.
Drs. Williams and Sudore: San Francisco Veterans Affairs Medical Center, 4150 Clement Street, 151R, San Francisco, CA 94121.
Ms. Hooper and Dr. Weithorn: Hastings College of the Law, 200 McAllister Street, San Francisco, CA 94102.
Mr. Sabatino: American Bar Association, 740 15th Street NW, Washington, DC 20005.
Author Contributions: Conception and design: L.S. Castillo, R.L. Sudore.
Drafting of the article: L.S. Castillo, B.A. Williams, S.M. Hooper, C.P. Sabatino, L.A. Weithorn, R.L. Sudore.
Critical revision of the article for important intellectual content: L.S. Castillo, B.A. Williams, S.M. Hooper, C.P. Sabatino, L.A. Weithorn, R.L. Sudore.
Final approval of the article: L.S. Castillo, B.A. Williams, S.M. Hooper, C.P. Sabatino, L.A. Weithorn, R.L. Sudore.
Obtaining of funding: R.L. Sudore.
Administrative, technical, or logistic support: L.S. Castillo, S.M. Hooper, R.L. Sudore.
Collection and assembly of data: L.S. Castillo, S.M. Hooper, R.L. Sudore.
Castillo L., Williams B., Hooper S., Sabatino C., Weithorn L., Sudore R.; Lost in Translation: The Unintended Consequences of Advance Directive Law on Clinical Care. Ann Intern Med. 2011;154:121-128. doi: 10.7326/0003-4819-154-2-201101180-00012
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Published: Ann Intern Med. 2011;154(2):121-128.
Advance directive law may compromise the clinical effectiveness of advance directives.
To identify unintended legal consequences of advance directive law that may prevent patients from communicating end-of-life preferences.
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.
Two independent reviewers selected 51 advance directive statutes and 20 articles. Three independent legal reviewers selected 105 legal proceedings.
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.
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.
Only appellate-level legal cases were available, which may have excluded relevant cases.
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.
U.S. Department of Veterans Affairs and the Pfizer Foundation.
Bernard J. Hammes, PhD
Gundersen Lutheran Health System
February 22, 2011
Lost in Translation: Making Improvements in Advance Care Planning without New Legislation
In their recent essay, Lesley S. Castillo et. al. (Ann Intern Med. 2011; 154:121-128) provide an analysis of how legislation has interfered with a physician's ability to respect a patient's preferences. The authors suggest that the focus of advance care planning (ACP) should move from a legal-transactional approach to a relationship- and communication- based approach. The authors also suggest that to make advance directives (ADs) more clinically useful we need greater flexibility in the law.
While greater flexibility in legislation would be welcomed, it is safe to say that such legislation is neither quick nor predictable. Is more legislation really the only approach?
We believe the answer is no.
Almost everything recommended by these authors has been accomplished by the health care organizations in La Crosse, Wisconsin by developing collaborative organizational policies and practices including a relationship-and communication-based(1). For example, a readable, clinically useful power of attorney for health document, consistent with state law, has been written and is used widely(2); health professionals are trained to have ACP conversations with patients and families; any authentic patient preference has weight regardless of how it is written down (e.g., physician's note); ACP can be accomplished in a way that is sensitive to the belief system of the patient. This approach has had extremely successful outcomes where 96% of all county residents have some type of advance care plan at the time of death(3).
The main objection to this La Crosse ACP model is that health professionals are not immune from legal action when their only defense might be that they followed the standard of care and that they honored a patient's common law rights. Despite this concern, in over 25 years of practice, there has not been a single legal action connected to ACP in La Crosse, Wisconsin. We think it is time that professional organizations as well as health care organizations start creating a more relationship- and communication- based approach as best practice and implement sound ACP practices through standards, policies, and clinical innovation.
(1) Prendergast TJ. Advance care planning: Pitfalls, progress, promise. Crit Care Med 2001;29(2 Suppl):N34-N39.
(2) La Crosse Region Power of Attorney for Health Care Document [online]. Available at: http://www.gundluth.org/?id=514&sid=1. Accessed February 9, 2011.
(3) Hammes BJ, Rooney BL, Gundrum JD. A comparative, retrospective, observational study of the prevalence, availability, and specificity of advance care plans in a county that implemented an advance care planning microsystem. JAGS 2010;58:1249-1255.
Dr. Hammes is employed by the Gundersen Lutheran Medical Foundation, Inc.,(GLMF) a not-for-profit organization. GLMF owns the copyrights for the Respecting Choices advance care planning program used in La Crosse, WI and serves as the basis for the descriptions used in this comment. Dr. Hammes provides consulting and training services on behalf of Respecting Choices that produces revenue for GLMF. Dr. Pearson does have competing interests.
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