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Issues in Documenting End-of-Life Wishes

Phipps E, True B, Harris D, et al. Approaching the end of life: attitudes, preferences, and behaviors of African-American and white patients and their family caregivers. Journal of Clinical Oncology. 2002;21:549-554.

Medical ethics in America emphasizes the right of patients to make their own decisions regarding their healthcare, and the end-of-life movement promotes honoring patient wishes on accepting or refusing life-sustaining interventions to allow death with dignity. The inclusion of advance directives or durable powers of attorney for a caregiver in a patient's medical record is an important step in maintaining patient autonomy. However, racial differences and patient status may affect whether these types of documents are used. Researchers interviewed 68 terminal cancer patients and their primary caregivers on knowledge about and use of advance documentation. Among the patients, the average age was 70 years, 38 were African American and 30 were white, and more African American than white patients were still receiving treatment. For the caregivers, most were female and either a spouse or a child of the patient caregivers, 36 were African American, and 32 were white. While white patients were more likely to have either a living will or a durable power of attorney, only 43% of the patients had either document in place. Stated reasons for having these documents included the desire to exercise control over the future and to avoid confusion and shield loved ones from making the decision, while reasons for not having the documents included that no one had approached them about it, that formal documentation was not necessary, and that they wanted to avoid the emotional distress of discussing the decisions. Between patients and caregivers, there was almost a 50% disagreement on the desired treatment interventions. Most patients and their families support the need for individual decision-making on end-of-life issues, but most had not discussed the issues or taken formal steps to declare their wishes.