BACKGROUND/RATIONALE:
Most older Veterans and their surrogate decision makers will eventually face complex, ongoing decisions over the course of chronic illness. These decisions are difficult, especially for the 50% of older Veterans with limited health literacy. Limited literacy has been associated with impaired decision-making, yet most end-of-life decision tools are written beyond the 12th grade level. Also, most end-of-life tools do not help patients identify and communicate their values for medical care or provide a framework for decision making over the course of serious and chronic illness. In this proposal, I have addressed the need for an easy-to-read advance care planning guide that meets the literacy needs of most U.S. elders.

OBJECTIVE(S):
The aims of this proposal were (1) to design an easy-to-read (5th grade level) values tool that is informed by input from Veterans, their surrogates and clinicians, and is presented in the most engaging format (questionnaire vs. story format); (2) to seek evidence of the value tool's reliability and validity; and (3) to determine whether the values tool can improve engagement in advance care planning and decision making.

METHODS:
All subjects were recruited from Primary Care, Oncology, Pulmonary, and Congestive Heart Failure clinics at the San Francisco VA Medical Center, and were 65 years or older, English-speaking, and had less than a 2-year life expectancy. For Aim 1, I used focus groups and cognitive interviews to obtain elders', surrogates', and clinicians' suggestions for the value tool's design and improvement. For Aim 2, I assessed the tool's reliability (test-retest) and construct validity. For Aim 3, I assessed the acceptability of the values tool to elderly Veterans and its ability to improve engagement in advance care planning and confidence in decision making.

FINDINGS/RESULTS:
Not yet available.

IMPACT:
My CDA aimed to provide an impetus for changing the paradigm of advance care planning policies within the VA and to provide tangible advance care planning support tools to veterans and their families. Thus far, my research program has helped redefine advance care planning as a process designed not just to pre-specify specific treatment procedures, but also to prepare patients and surrogates for decision making for serious illness. I have been able to create a novel multi-media advance care planning education guide that is currently being tested in the VA and made available to Veterans through clinical programs.

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External Links for this Project

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PUBLICATIONS:

Journal Articles

1. 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. Journal of the American Geriatrics Society. 2009 Jan 1; 57(1):31-9. [view]
2. Sudore RL. A piece of my mind. Can we agree to disagree? JAMA. 2009 Oct 21; 302(15):1629-30. [view]
3. Williams BA, Sudore RL, Greifinger R, Morrison RS. Balancing punishment and compassion for seriously ill prisoners. Annals of internal medicine. 2011 Jul 19; 155(2):122-6. [view]
4. Laiteerapong N, Karter AJ, Liu JY, Moffet HH, Sudore R, Schillinger D, John PM, Huang ES. Correlates of quality of life in older adults with diabetes: the diabetes & aging study. Diabetes Care. 2011 Aug 1; 34(8):1749-53. [view]
5. Sudore RL, Schickedanz AD, Landefeld CS, Williams BA, Lindquist K, Pantilat SZ, Schillinger D. Engagement in multiple steps of the advance care planning process: a descriptive study of diverse older adults. Journal of the American Geriatrics Society. 2008 Jun 1; 56(6):1006-13. [view]
6. Widera E, Steenpass V, Marson D, Sudore R. Finances in the older patient with cognitive impairment: "He didn't want me to take over". JAMA. 2011 Feb 16; 305(7):698-706. [view]
7. Lee SJ, Sudore RL, Williams BA, Lindquist K, Chen HL, Covinsky KE. Functional limitations, socioeconomic status, and all-cause mortality in moderate alcohol drinkers. Journal of the American Geriatrics Society. 2009 Jun 1; 57(6):955-62. [view]
8. Kernisan LP, Sudore RL, Knight SJ. Information-seeking at a caregiving website: a qualitative analysis. Journal of Medical Internet Research [Electronic Resource]. 2010 Jul 28; 12(3):e31. [view]
9. Schenker Y, Fernandez A, Sudore R, Schillinger D. Interventions to Improve Patient Comprehension in Informed Consent for Medical and Surgical Procedures: A Systematic Review. Medical Decision Making. 2011 Jan 1. [view]
10. Castillo LS, Williams BA, Hooper SM, Sabatino CP, Weithorn LA, Sudore RL. Lost in translation: the unintended consequences of advance directive law on clinical care. Annals of internal medicine. 2011 Jan 18; 154(2):121-8. [view]
11. Smith AK, Sudore RL, Pérez-Stable EJ. Palliative care for Latino patients and their families: whenever we prayed, she wept. JAMA : the journal of the American Medical Association. 2009 Mar 11; 301(10):1047-57, E1. [view]
12. Sudore RL, Landefeld CS, Pantilat SZ, Noyes KM, Schillinger D. Reach and impact of a mass media event among vulnerable patients: the Terri Schiavo story. Journal of general internal medicine. 2008 Nov 1; 23(11):1854-7. [view]
13. Sudore RL, Fried TR. Redefining the "planning" in advance care planning: preparing for end-of-life decision making. Annals of internal medicine. 2010 Aug 17; 153(4):256-61. [view]
14. Sudore RL, Covinsky KE. Respecting elders by respecting their paid caregivers. Journal of general internal medicine. 2011 May 1; 26(5):464-5. [view]
15. Vig EK, Sudore RL, Berg KM, Fromme EK, Arnold RM. Responding to surrogate requests that seem inconsistent with a patient's living will. Journal of pain and symptom management. 2011 Nov 1; 42(5):777-82. [view]
16. Sudore RL, Villars P, Carey EC. Sitting with you in your suffering: lessons about intractable pain at the end of life. Journal of palliative medicine. 2010 Jun 1; 13(6):779-82. [view]
17. Sudore RL, Schillinger D, Knight SJ, Fried TR. Uncertainty about advance care planning treatment preferences among diverse older adults. Journal of Health Communication. 2010 Jan 1; 15 Suppl 2:159-71. [view]
18. Sudore RL, Landefeld CS, Pérez-Stable EJ, Bibbins-Domingo K, Williams BA, Schillinger D. Unraveling the relationship between literacy, language proficiency, and patient-physician communication. Patient education and counseling. 2009 Jun 1; 75(3):398-402. [view]
19. Sarkar U, Schillinger D, López A, Sudore R. Validation of self-reported health literacy questions among diverse English and Spanish-speaking populations. Journal of general internal medicine. 2011 Mar 1; 26(3):265-71. [view]

Conference Presentations

1. Sudore R, McMahan R, Castillo LS, Knight SJ. A New Paradigm of Advance Care Planning Focused on Preparation for Decision Making: Perspectives from Veterans and their Surrogates. Poster session presented at: VA HSR&D National Meeting; 2011 Feb 16; Washington, DC. [view]
2. Sudore R. Bridging the Gap for Elders with Limited Health Literacy. Paper presented at: American Geriatrics Society Annual Meeting; 2009 Apr 28; Chicago, IL. [view]
3. Sudore R. The Clash Between Advance Directive Law and Clinical Care: Ramifications for Vulnerable Populations. Paper presented at: Society of General Internal Medicine Annual Meeting; 2010 May 1; Minneapolis, MN. [view]
4. Castillo LS, Williams BA, Hooper S, Sabatino C, Weithorn L, Sudore R. The Clash Between Advance Directive Law and Clinical Care: Ramifications for Vulnerable Populations. Paper presented at: American Academy of Hospice and Palliative Medicine Annual Assembly; 2011 Feb 17; Vancouver, Canada. [view]
5. Sudore R. Uncertainty of Advance Care Planning Treatment Preferences Among Diverse Older Adults. Paper presented at: American Academy of Hospice and Palliative Medicine Annual Assembly; 2010 Mar 4; Boston, MA. [view]

DRA: Aging, Older Veterans' Health and Care, Health Systems
DRE: Technology Development and Assessment
Keywords: End-of-life, Long-term care
MeSH Terms: none