Fearing Pain at the End of Life: A Review of Advance Directives

Patients, caregivers, and healthcare professionals often describe a "good death" as a pain-free process. However, many patients experience pain during their last weeks of life. Advance directives (ADs) are legally binding documents that allow individuals to express their wishes for end-of-life care which should include management of their pain.

An interprofessional team conducted a comprehensive analysis of ADs from all 50 states and the District of Columbia to assess the inclusion of language that reflects patients' wishes for pain relief at the end of life.

Thirty-seven (73%) of the 51 entities examined reflected the prototypical directive, containing explicit instructions for withholding or withdrawing interventions that may prolong suffering rather than options for treating pain. Of these, 12 (24%) did not include the word "pain". Only 14 states (27%) provided clear guidance for managing pain. Unexpectantly, researchers found that 13 (25%) addressed the common fears of patients, caregivers, and healthcare teams when using opioids to relieve suffering, such as addiction, sedation, appetite, or respiratory suppression, and hastening death.

The majority of ADs reviewed lacked clear and comprehensive measures for addressing pain relief. This deficiency may contribute to the undertreatment of pain and amplify the anxiety felt by patients, families, and healthcare providers when making end-of-life decisions. The results highlight the need for improvements in ADs to help ensure that patients' wishes regarding pain management are adequately addressed, documented and respected.