Advance care planning: End-of-life hopes and fears among community dwelling adults

Abstract

End-of-life (EOL) medical care in the United States often does not align with patients’ goals and preferences. This study explored EOL hopes and fears among 86 community-dwelling adults and examined medical and psychological predictors of death anxiety. Common EOL hopes included absence of suffering, closure, and personal fulfillment. Common EOL fears included suffering, lack of competence, and specific types of death. Fear of the dying process was greater than fear of death itself. Health predicted death anxiety; age alone, did not. Advance care planning and clinical decision making should include these psychological insights and explicitly address EOL hopes and fears.

Home Care Clinicians' Perspectives on Advance Care Planning for Patients at Risk for Becoming Incapacitated With No Evident Advance Directives or Surrogates

“…This study elucidated special considerations for patients at risk of becoming INEADS, including distrust in medical teams and health proxies and preferences not to involve others in their health care decisions. Such patients may benefit from education that emphasizes how ACP can be a means of maintaining autonomy and reducing the likelihood that health care decisions will default to another party, and previous work on the importance of addressing patient concerns and fears regarding ACP may be particularly applicable 31 . Legal considerations and risk management appear to factor into the care provided to patients who are INEADS or at risk for becoming INEADS.…”

“…Such patients may benefit from education that emphasizes how ACP can be a means of maintaining autonomy and reducing the likelihood that health care decisions will default to another party, and previous work on the importance of addressing patient concerns and fears regarding ACP may be particularly applicable. 31 Legal considerations and risk management appear to factor into the care provided to patients who are INEADS or at risk for becoming INEADS. On one extreme, clinicians reported instances in which care was delayed because clinical teams could not locate family members to provide consent on behalf of patients.…”