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

Annals of Internal Medicine

Volumn 154, Issue 2, 2011, Pages 121-128

  Castillo, Lesley S ^a   Williams, Brie A ^a   Hooper, Sarah M ^b   Sabatino, Charles P ^c   Weithorn, Lois A ^b   Sudore, Rebecca L ^a  

^a SAN FRANCISCO VETERANS AFFAIRS MEDICAL CENTER   (United States)

^b Hastings College of the Law   (United States)

^c AMERICAN BAR ASSOCIATION   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

ARTICLE; COLOMBIA; CONTENT ANALYSIS; HEALTH SERVICE; HUMAN; LAW; LIVING WILL; MEDLINE; PRIORITY JOURNAL; READING; UNITED STATES;

EID: 79551625250     PISSN: 00034819     EISSN: 15393704     Source Type: Journal    
DOI: 10.7326/0003-4819-154-2-201101180-00012     Document Type: Article

References (68)

1. Gillick MR. Decision making near life's end: a prescription for change. J \Palliat Med. 2009;12:121-125. [PMID: 19207053]
2. Gostin LO. Deciding life and death in the courtroom. From Quinlan to Cruzan, Glucksberg, and Vacco-a brief history and analysis of constitutional protection of the 'right to die'. JAMA. 1997;278:1523-1528. [PMID: 9363974]
3. Sabatino CP. De-Balkanizing state advance directive law. Bifocal: Bar Associations in Focus on Aging and the Law. 2003;25:5-9.
4. Sabatino CP. The evolution of health care advance planning law and policy. Milbank Q. 2010;88:211-239. [PMID: 20579283]
5. Sulmasy DP, Terry PB, Weisman CS, Miller DJ, Stallings RY, Vettese MA, et al. The accuracy of substituted judgments in patients with terminal diagnoses.Ann Intern Med. 1998;128:621-629. [PMID: 9537935]
6. Silveira MJ, Kim SY, Langa KM. Advance directives and outcomes of surrogate decision making before death. N Engl J Med. 2010;362:1211-1218. [PMID: 20357283]
7. Detering KM, Hancock AD, Reade MC, Silvester W. The impact of advance care planning on end of life care in elderly patients: randomised controlled trial. BMJ. 2010;340:c1345. [PMID: 20332506]
8. Teno JM, Gruneir A, Schwartz Z, Nanda A, Wetle T. Association between advance directives and quality of end-of-life care: a national study. J Am Geriatr Soc. 2007;55:189-194. [PMID: 17302654]
9. Fagerlin A, Schneider CE. Enough. The failure of the living will. Hastings Cent Rep. 2004;34:30-42. [PMID: 15156835]
10. Hanson LC, Rodgman E. The use of living wills at the end of life. A national study. Arch Intern Med. 1996;156:1018-1022. [PMID: 8624167]
11. Kusmin B. Swing low, sweet chariot: abandoning the disinterested witness requirement for advance directives. Am J Law Med. 2006;32:93-116. [PMID: 16676818]
12. Sudore RL, Landefeld CS, Barnes DE, Lindquist K, Williams BA, Brody R, et al. An advance directive redesigned to meet the literacy level of most adults: a randomized trial. Patient Educ Couns. 2007;69:165-195. [PMID: 17942272]
13. Aging with Dignity. Five Wishes. Accessed at www.agingwithdignity.org on 1 December 2010.
14. Tolle SW, Tilden VP, Nelson CA, Dunn PM. A prospective study of the efficacy of the physician order form for life-sustaining treatment. J Am Geriatr Soc. 1998;46:1097-1102. [PMID: 9736102]
15. Sabatino CP. National advance directives: one attempt to scale the barriers. National Academy of Elder Law Attorneys. 2005;1:131-164.
16. Hsieh HF, Shannon SE. Three approaches to qualitative content analysis. Qual Health Res. 2005;15:1277-1288. [PMID: 16204405]
17. Ache KA, Wallace LS. Are end-of-life patient education materials readable? Palliat Med. 2009;23:545-548. [PMID: 19460831]
18. Mueller LA, Reid KI, Mueller PS. Readability of state-sponsored advancedirective forms in the United States: a cross sectional study. BMC Med Ethics. 2010;11:6. [PMID: 20416105]
19. Institute of Medicine. Health Literacy: A Prescription to End Confusion. Washington DC: National Academies Pr; 2004.
20. Schillinger D, Piette J, Grumbach K, Wang F, Wilson C, Daher C, et al. Closing the loop: physician communication with diabetic patients who have low health literacy. Arch Intern Med. 2003;163:83-90. [PMID: 12523921]
21. Williams MV, Baker DW, Parker RM, Nurss JR. Relationship of functional health literacy to patients' knowledge of their chronic disease. A study of patients with hypertension and diabetes. Arch Intern Med. 1998;158:166-172. [PMID: 9448555]
22. Fagerlin A, Ubel PA, Smith DM, Zikmund-Fisher BJ. Making numbers matter: present and future research in risk communication. Am J Health Behav. 2007;31 Suppl 1:S47-56. [PMID: 17931136]
23. Davis TC, Williams MV, Marin E, Parker RM, Glass J. Health literacy and cancer communication. CA Cancer J Clin. 2002;52:134-149. [PMID: 12018928]
24. Karp N, Wood E. Incapacitated and Alone: Health Care Decision-Making for the Unbefriended Elderly. Chicago: American Bar Association Commission on Law and Aging; 2004. Accessed at www.abanet.org/irr/hr/spring04/incapacitated.html on 1 December 2010.
25. Crawley LM. Palliative care in African American communities [Editorial]. J Palliat Med. 2002;5:775-779. [PMID: 12572983]
26. Smith AK, Sudore RL, Pérez-Stable EJ. Palliative care for Latino patients and their families: whenever we prayed, she wept. JAMA. 2009;301:1047-1057, E1. [PMID: 19278947]
27. Longmore PK. Policy, predjudice, and reality. Journal of Disability Policy Studies. 2005;38-45.
28. Kushel MB, Miaskowski C. End-of-life care for homeless patients: "she says she is there to help me in any situation". JAMA. 2006;296:2959-2966. [PMID: 17190897]
29. Teno JM, Stevens M, Spernak S, Lynn J. Role of written advance directives in decision making: insights from qualitative and quantitative data. J Gen Intern Med. 1998;13:439-446. [PMID: 9686709]
30. Volandes AE, Paasche-Orlow M, Gillick MR, Cook EF, Shaykevich S, Abbo ED, et al. Health literacy not race predicts end-of-life care preferences. J Palliat Med. 2008;11:754-762.[PMID: 18588408]
31. Furlong EB. Legal trends in end-of-life health care decision-making. Bifocal: Bar Associations in Focus on Aging and the Law. 2005;27:21-27.
32. Gillick MR. The use of advance care planning to guide decisions about artificial nutrition and hydration. Nutr Clin Pract. 2006;21:126-133. [PMID: 16556922]
33. Schickedanz AD, Schillinger D, Landefeld CS, Knight SJ, Williams BA, Sudore RL. A clinical framework for improving the advance care planning process: start with patients' self-identified barriers. J Am Geriatr Soc. 2009;57:31-39. [PMID: 19170789]
34. National Law Center on Homelessness and Poverty. 2007 Annual report. 2007. Accessed at www.nlchp.org on 1 December 2010.
35. Song J, Bartels DM, Ratner ER, Alderton L, Hudson B, Ahluwalia JS. Dying on the streets: homeless persons' concerns and desires about end of life care. J Gen Intern Med. 2007;22:435-441. [PMID: 17372789]
36. Gillick MR. Medical decision-making for the unbefriended nursing home resident. J Ethics Law Aging. 1995;1:87-92. [PMID: 11654399]
37. Rosenfeld KE, Wenger NS, Kagawa-Singer M. End-of-life decision making: a qualitative study of elderly individuals. J Gen Intern Med. 2000;15:620-625. [PMID: 11029675]
38. U.S. Census Bureau. 2006-2008 American community survey. Washington, DC: U.S. Census Bureau; 2008.
39. U.S. Census Bureau. Language use. Accessed at www.census.gov/hhes/socdemo/language/index.html on 1 December 2010.
40. Lo B. Resolving Ethical Dilemmas: A Guide for Clinicians. 4th ed. Baltimore: Lippincott Williams & Wilkins; 2009.
41. Lo B, Steinbrook R. Resuscitating advance directives. Arch Intern Med. 2004;164:1501-1506. [PMID: 15277279]
42. Arnold RM, Kellum J. Moral justifications for surrogate decision making in the intensive care unit: implications and limitations. Crit Care Med. 2003;31: S347-353. [PMID: 12771581]
43. Sehgal A, Galbraith A, Chesney M, Schoenfeld P, Charles G, Lo B. How strictly do dialysis patients want their advance directives followed? JAMA. 1992; 267:59-63. [PMID: 1489360]
44. Hawkins NA, Ditto PH, Danks JH, Smucker WD. Micromanaging death: process preferences, values, and goals in end-of-life medical decision making. Gerontologist. 2005;45:107-117. [PMID: 15695421]
45. Perkins HS. Controlling death: the false promise of advance directives. Ann Intern Med. 2007;147:51-57. [PMID: 17606961]
46. Meisel A, Snyder L, Quill T; American College of Physicians-American Society of Internal Medicine End-of-Life Care Consensus Panel. Seven legal barriers to end-of-life care: myths, realities, and grains of truth. JAMA. 2000;284: 2495-2501. [PMID: 11074780]
47. Wisconsin Secretary of State. Notary public: general information. 2007. Accessed at www.sos.state.wi.us/notary.htm on 1 December 2010.
48. California Government Code Section 8200-8230. Notary public california. Accessed at www.leginfo.ca.gov/cgi-bin/displaycode?section_govgroup_08001-09000file_8200-8230 on 1 December 2010.
49. Mass. Gen. Laws. Ann. ch. 201D, § 5.
50. Giger JN, Davidhizar RE, Fordham P. Multi-cultural and multi-ethnic considerations and advanced directives: developing cultural competency. J Cult Divers. 2006;13:3-9. [PMID: 16696539]
51. Kwak J, Haley WE. Current research findings on end-of-life decision making among racially or ethnically diverse groups. Gerontologist. 2005;45:634-41. [PMID: 16199398]
52. Blackhall LJ, Murphy ST, Frank G, Michel V, Azen S. Ethnicity and attitudes toward patient autonomy. JAMA. 1995;274:820-825. [PMID: 7650806]
53. Murray TH, Jennings B. The quest to reform end of life care: rethinking assumptions and setting new directions. Hastings Cent Rep. 2005;Spec No: S52-57. [PMID: 16468257]
54. Searight HR, Gafford J. Cultural diversity at the end of life: issues andguidelines for family physicians. Am Fam Physician. 2005;71:515-522. [PMID: 15712625]
55. Kemp C. Cultural issues in palliative care. Semin Oncol Nurs. 2005;21:44-52. [PMID: 15807056]
56. Gunter-Hunt G, Mahoney JE, Sieger CE. A comparison of state advance directive documents. Gerontologist. 2002;42:51-60. [PMID: 11815699]
57. Gill CJ, Voss LA. Views of disabled people regarding legalized assisted suicide before and after a balanced informational presentation. Journal of Disability Policy Studies. 2005;16:6-15.
58. Sethi M. A patient's right to direct own health care vs. a physician's right to decline to provide treatment. Bifocal: Bar Associations in Focus on Aging and the Law. 2007;29:21-34, 6.
59. Ky. Rev. Stat. § 311.633(2).
60. Fla. Stat. Ann. § 765.1105(2).
61. Sudore RL, Fried TR. Redefining the "planning" in advance care planning: preparing for end-of-life decision making. Ann Intern Med. 2010;153:256-261. [PMID: 20713793]
62. National Conference of Commissioners of Uniform State Laws. Uniform Health-Care Decisions Act. 1993.
63. California Department of Developmental Services. Thinking Ahead: My Way, My Choice, My Life at the End. Sacramento, CA: California Department of Developmental Services 2008.
64. Beltran JE. Shared decision making: the ethics of caring and best respect. Bioethics Forum. 1996;12:17-25. [PMID: 11660305]
65. Lexile Analyzer. MetaMetrics. Accessed at www.lexile.com on 1 December 2010.
66. Okla Stat. Ann. tit. 63, 3080.4.
67. Kolarik RC, Arnold RM, Fischer GS, Hanusa BH. Advance care planning. J Gen Intern Med. 2002;17:618-24. [PMID: 12213143]
68. S.C. Code 62-5-504.