Making End-of-Life Care Decisions for Older Adults Subject to Guardianship

This Article addresses end-of-life decision-making by guardians of older adults. First, the Article presents current definitions of hospice and palliative care and describes several common end-of-life disease trajectories. This background information introduces the diverse contexts in which guardians may find themselves when making end-of-life care decisions. The next section sets forth results of our recent research focusing on end-of-life care for unbefriended adults subject to guardianship. "Unbefriended" adults are thoses who lack decision-making capacity, have no advance directive, and have no family or friends to serve as a surrogate decision-maker. As such, professional guardians may be appointed when health care decisions are needed. Making health care decisions for such adults, particularly end-of-life care decisions, can be challenging. Little to nothing may be known about the person's values prior to guardianship and the patient may be unable to convey his or her wishes and goals to the guardian. The third section provides practical guidance to guardians. We discuss the assessment of values-with some thoughts about what to do when it is not possible to assess values. Finally, we discuss several common end-of-life health care decisions that may confront guardians-a code status change, a do not transfer order, and deescalating care within an intensive care unit. For these situations, we provide information from the perspective of our interdisciplinary team for the purposes of supporting guardians who face these challenging decisions.