Ethical issues near the end of life (EOL) often arise because of concerns about how much and what kind of care make sense for someone with a limited life expectancy, particularly if the patient is very old. There is often conflict between physicians or nurses and family members about what constitutes appropriate care. Many of these conflicts can be avoided by clarifying who makes the difficult decisions to limit care and by advance care planning. Understanding the ethical and legal framework in which such decisions are made can also transform what appear to be problematic questions into straightforward answers.
A practical approach to advance care planning (ACP) and legal aspects of ACP are discussed separately. (See "Advance care planning and advance directives" and "Legal aspects in palliative and end of life care".)
WHO MAKES THE DECISIONS?
Physicians have recognized the right of the patient to participate in medical decision making for the last 25 years. The principle of autonomy, or the right to make choices about one's own life, has now become the centerpiece of modern American biomedical ethics . The available data suggest that patients with terminal cancer are more likely to receive end of life care that is consistent with their preferences when they have had the opportunity to discuss their wishes with their physician .
Unfortunately, close to 50 percent of individuals over age 85 have dementia, which usually precludes their understanding many of the issues involved in choosing among treatment alternatives . In addition, many cognitively intact elderly are delirious during an acute illness and are incapable of complex discussions about their care when important decisions must be made. In these situations, a surrogate must be identified to speak on behalf of the older patient.
Some have cautioned that excessive deference to patient autonomy has the potential to place unwanted and unreasonable responsibility for technical medical decisions on patients or their surrogate decision makers . Given the array of treatments now available for advanced and chronic illness, it is difficult, and at times nearly impossible, for patients or their surrogates to fully comprehend the burdens and benefits of the available options. It remains the responsibility of the clinician to solicit and understand the patient’s goals and values, and then guide and facilitate medical decisions so that the treatments that are provided are consistent with these goals and values.