A Culturally Sensitive Values-Guided Aid for End of Life Decision-Making

The goal of this research agenda is to improve the quality of end-of-life care by explicitly identifying values that will guide the decision-making process, with a particular emphasis on the role of ethnic, racial and cultural factors.

Background: 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. Some invasive procedures done in seriously ill patients do not significantly alter their course, many patients die without having pain or other symptoms addressed, and families may feel dissatisfied with the care provided. Additionally, there are striking racial/ethnic disparities in end-of-life care.

Objectives: 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. 1) We will 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) We will then adapt the existing Values Histories into a clinically practical tool, the Values Inventory discussion aid. 3) We will 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. Eligible patients are at risk for 6-12-month mortality with one of the following diagnoses: congestive heart failure, with ejection fraction of less than 25%; severe chronic obstructive pulmonary disease/emphysema with dependence on oxygen; chronic liver disease with cirrhosis and ascites; colon carcinoma with liver metastases; or non-small cell cancer of the lung, stage III or IV. All (patient) participants are age 55 years or older and are recruited through the clinics/wards at the Houston VAMC. Surrogates are surrogates of patients with such conditions; physicians are 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 will be done.

Findings: 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. This aspect of the burden of surrogate decision making may not be fully appreciated by physicians. Physicians should identify and 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 to assist them in this difficult process.

Based on the responses of participants in Phase I, the instrument was refined and a more culturally sensitive instrument was presented to participants in Phase II. Recruitment of Hispanic patients for Phase II was challenging since the older Hispanic population at MEDVAMC is much smaller than the black or white population.

Status: We screened 3250 patients for eligibility into the study (objective 1), identified 192 eligible subjects, 169 subjects were contacted and 65 (38%) agreed to participate. 33 surrogates and 38 patients (African Americans, Hispanics, and whites) completed structured interviews (4 subjects did not complete both interviews). All interviews were transcribed and data managed with Atlas Ti. The Values Inventory discussion aid was created based on the interviews. For the last phase (objective 3) 23,787 patients were screened for eligibility, identified 642 eligible subjects, and of those 128 patients completed the intervention. 4 case studies with surrogates were also completed. Interviews were transcribed and data analysis using Atlas Ti is ongoing.

Impact: This project lays the foundation for formally testing the efficacy of the Values Inventory in a larger clinical trial. The long-term goal of this research agenda is to improve the quality of end-of-life care by explicitly identifying values that guide the decision-making process, with particular emphasis on the role of ethnic, racial and cultural factors.

Primary care clinic at a large tertiary VA Medical Center

• Congestive Heart Failure
• Chronic Obstructive Pulmonary Disease
• Cirrhosis
• Colon Carcinoma
• Lung Cancer

• Behavioral: Individual interviews re: end-of-life decision-making
  38 interviews with patients and 33 interviews with surrogates were conducted
• Behavioral: Values history discussion w/physician & patient/surrogate
  128 patient/physician values history discussions were taped, also 4 case studies with surrogates were completed.

• Poon IO, Lal L, Brown EN, Braun UK. The impact of pharmacist-managed oral anticoagulation therapy in older veterans. J Clin Pharm Ther. 2007 Feb;32(1):21-9.
• Braun UK, Beyth RJ, Ford ME, McCullough LB. Defining limits in care of terminally ill patients. BMJ. 2007 Feb 3;334(7587):239-41. Review. No abstract available.
• 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. J Natl Med Assoc. 2008 Sep;100(9):1041-51.
• 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;63(6):25-7. Review.
• 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. J Gen Intern Med. 2008 Mar;23(3):267-74. Epub 2008 Jan 3.
• Braun UK, Naik AD, McCullough LB. Reconceptualizing the experience of surrogate decision making: reports vs genuine decisions. Ann Fam Med. 2009 May-Jun;7(3):249-53.

Inclusion Criteria:

• Eligible patients will be at risk for 6-12 month mortality and have one of the following diagnoses:

  • congestive heart failure, with ejection fraction of <25%;
  • severe chronic obstructive pulmonary disease/emphysema with dependence on oxygen;
  • chronic liver disease with cirrhosis and ascites;
  • colon carcinoma with liver metastases; or
  • non-small cell cancer of the lung, stage III or IV.
• All participants will be age 55 years or older and will be recruited through the clinics at the Houston VAMC.

Exclusion Criteria:

• Patients with dementia
• Patients less than 55 years old