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IIR 02-224 – HSR&D Study

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IIR 02-224
A Culturally Sensitive Values-Guided Aid for End of Life Decision-Making
Ursula K. Braun MD MPH
Michael E. DeBakey VA Medical Center, Houston, TX
Houston, TX
Funding Period: April 2004 - September 2009

BACKGROUND/RATIONALE:
End-of-life decision-making is an important aspect of providing quality healthcare, especially for the elderly population. Increasingly, the appropriateness of many of these decisions is being questioned. The explicit identification of values that guide medical decision-making could improve the decision-making process for end-of-life care for patients of all races/ethnicities.

OBJECTIVE(S):
Phase I: 1) To directly compare, critically assess, and revise two Values Histories on the basis of qualitative data derived from individual interviews with racially/ethnically diverse patients and surrogates, and explore patients', surrogates', and physicians' values, preferences and concerns that guide decision-making about medical interventions at the end-of-life. 2) To then adapt the existing Values Histories into a clinically practical tool, the Values Inventory discussion aid.
Phase II: 3) To conduct preliminary testing of this tool to be used in physician-patient or physician-surrogate encounters to improve and facilitate decisions about end-of-life care.

METHODS:
Cross-sectional qualitative study using individual interviews with racially-ethnically diverse seriously ill patients and surrogates, and focus group interviews with physicians. Seriously ill eligible patients were at risk for 6-12- month mortality. All (patient) participants age 55 years or older were recruited through the clinics/wards at the Houston VAMC. Surrogates were surrogates of patients with such conditions; physicians were generalists and medical subspecialists. To achieve objective 3, a small randomized trial to test the feasibility of using the developed Values Inventory discussion aid in clinical practice was done.

FINDINGS/RESULTS:
33 surrogates and 38 patients completed structured interviews; 26 physicians completed focus group interviews. Regardless of race/ethnicity, surrogates for seriously ill patients appeared to experience increased significant, multidimensional burdens of decision making under conditions of uncertainty about a patient's preferences, which may not be fully appreciated by physicians. Physicians should be especially attentive to strategies used by surrogates, which may vary by race/ethnicity, to reduce the uncertainty about a patient's preferences and thus the burden of surrogate decision making. Among patients, depending on their decision making style and their communication with potential surrogates, several pathways seemed to lead to life-sustaining treatments by default. By recognizing these pathways, physicians could potentially prevent such default treatments.
The Values Inventory discussion aid was revised and refined and a more culturally sensitive instrument was presented to participants in Phase II.
Ten generalists and ten subspecialists were enrolled for phase II, together with 128 of their patients (64 in the 'usual care' group, 64 in the 'values inventory' group). The Values Inventory was well accepted by patients, but did not increase discussions with physicians significantly. Even though many have promoted primary care settings as ideal setting for end-of-life care planning, we found this setting inadequate to achieve this goal. However, the tool facilitated and increased patients' conversations with potential surrogates about end-of-life care.

IMPACT:
This project explicitly identified values that guide the decision-making process for end-of-life care with particular emphasis on the role of ethnic, racial and cultural factors. The study resulted in several publications, making strong contributions to the literature on surrogate decision making and the physician's role in assisting surrogates make end-of-life decisions for others. We also identified pathways for patients that can potentially result in receiving life-sustaining treatments by default, and we propose preventive strategies to avoid such default treatment. Future research will examine interventions specifically designed to interrupt pathways to life-sustaining treatments by default.

PUBLICATIONS:

Journal Articles

  1. Menon S, McCullough LB, Beyth RJ, Ford ME, Espadas D, Braun UK. Use of a values inventory as a discussion aid about end-of-life care: A pilot randomized controlled trial. Palliative & supportive care. 2016 Aug 1; 14(4):330-40.
  2. Braun UK, Beyth RJ, Ford ME, Espadas D, McCullough LB. Decision-making styles of seriously ill male Veterans for end-of-life care: Autonomists, Altruists, Authorizers, Absolute Trusters, and Avoiders. Patient education and counseling. 2014 Mar 1; 94(3):334-41.
  3. Braun UK, McCullough LB. Preventing life-sustaining treatment by default. Annals of Family Medicine. 2011 May 1; 9(3):250-6.
  4. Braun UK, Ford ME, Beyth RJ, McCullough LB. The physician's professional role in end-of-life decision-making: voices of racially and ethnically diverse physicians. Patient education and counseling. 2010 Jul 1; 80(1):3-9.
  5. Braun UK, Naik AD, McCullough LB. Reconceptualizing the experience of surrogate decision making: reports vs genuine decisions. Annals of Family Medicine. 2009 May 1; 7(3):249-53.
  6. Braun UK, McCullough LB, Beyth RJ, Wray NP, Kunik ME, Morgan RO. Racial and ethnic differences in the treatment of seriously ill patients: a comparison of African-American, Caucasian and Hispanic veterans. Journal of the National Medical Association. 2008 Sep 1; 100(9):1041-51.
  7. Braun UK, Kunik ME, Pham C. Treating depression in terminally ill patients can optimize their physical comfort at the end of life and provide them the opportunity to confront and prepare for death. Geriatrics. 2008 Jun 1; 63(6):25-7.
  8. Braun UK, Beyth RJ, Ford ME, McCullough LB. Voices of African American, Caucasian, and Hispanic surrogates on the burdens of end-of-life decision making. Journal of general internal medicine. 2008 Mar 1; 23(3):267-74.
  9. Braun UK, Beyth RJ, Ford ME, McCullough LB. Defining limits in care of terminally ill patients. BMJ (Clinical research ed.). 2007 Feb 3; 334(7587):239-41.
Journal Other

  1. Pham C, Braun UK. Racial and Ethnic Differences in End-of-Life Care for Patients with End-Stage Renal Disease. [Abstract]. Journal of pain and symptom management. 2009 Mar 1; 37(3):556-557.
  2. Nambiar A, McCullough L, Ford M, Beyth R, Braun UK. Discussing End-of-Life Decision Making: Views of Racially and Ethnically Diverse Physicians. [Abstract]. The Gerontologist. 2006 Oct 1; 46(Special Issue 1):402.
  3. Braun UK, Ford ME, McCullough L, Beyth RJ. Discussing End-of-Life Decision Making: Views of Racially and Ethnically Diverse Physicians. [Abstract]. The Journal of Nutrition, Health & Aging. 2006 Aug 1; 10(4):332.
  4. Braun U, Morgan RO, Ford ME, Beyth RJ. Who gets what? Race/ethnicity matter for treatment of seriously ill veterans. [Abstract]. Journal of the American Geriatrics Society. 2006 Apr 1; 54(S4):S180.
  5. Braun U, McCullough L, Ford M, Espadas D, Beyth R. End-of-life care across race and ethnicities: Voices of patients, surrogates, and physicians. [Abstract]. Journal of the American Geriatrics Society. 2005 Apr 1; 53(s1):S137-8.
Conference Presentations

  1. Menon S, McCullough LB, Beyth RJ, Ford ME, Espadas D, Braun UK. Feasibility of Using a Values Inventory as a Discussion Aid about End-of-Life Care. Poster session presented at: Gerontological Society of America Annual Scientific Meeting; 2010 Nov 21; New Orleans, LA.
  2. Pham C, Braun UK. Racial and Ethnic Differences in End-of-Life Care for Patients with End-Stage Renal Disease. Poster session presented at: American Academy of Hospice and Palliative Medicine Annual Assembly; 2009 Mar 25; Austin, TX.
  3. Braun UK, Morgan RO, McCullough LB, Kunik ME. Racial/ethnic differences in the use of mental health services in seriously ill veterans. Poster session presented at: American Geriatrics Society Annual Meeting; 2007 May 4; Seattle, WA.
  4. Beyth RJ, Wilson D, Braun UK, Bautista M. Pilot Study of Patients' Beliefs about Warfarin Therapy for Chronic Atrial Fibrillation. Presented at: VA HSR&D National Meeting; 2007 Feb 1; Arlington, VA.
  5. Nambiar A, McCullough L, Ford M, Beyth R, Braun UK. Discussing End-of-Life Decision Making: Views of Racially and Ethnically Diverse Physicians. Poster session presented at: American Geriatrics Society Annual Meeting; 2006 Nov 19; Dallas, TX.
  6. Braun UK, Ford ME, McCullough L, Beyth RJ. Discussing End-of-Life Decision Making: Views of Racially and Ethnically Diverse Physicians. Paper presented at: European Union Geriatric Medicine Society Annual Congress; 2006 Aug 24; Geneva, Switzerland.
  7. Braun U, Morgan RO, Ford ME, Beyth RJ. Who gets what? Race/ethnicity matter for treatment of seriously ill veterans. Poster session presented at: American Geriatrics Society Annual Meeting; 2006 May 5; Chicago, IL.
  8. Braun U, McCullough L, Ford M, Espadas D, Beyth R. End-of-life care across race and ethnicities: voices of patients, surrogates and physicians. Paper presented at: American Geriatrics Society Annual Meeting; 2005 May 13; Orlando, FL.
  9. Braun U, McCullough L, Ford M, Espadas D, Beyth R. End-of-life care across race and ethnicities: voices of patients, surrogates and physicians. Paper presented at: VA HSR&D Career Development Annual Meeting; 2005 Feb 16; Baltimore, MD.


DRA: Aging, Older Veterans' Health and Care, Health Systems
DRE: none
Keywords: Decision support, End-of-life, Minority
MeSH Terms: none

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