The best end of life care is always that which aligns with the wishes and values of the incapacitated person. For individuals with the capacity to execute advance directives, these documents and conversations with appointed surrogates are the clearest way to make care values known. However, the time, access, and ability to engage in advance planning is not an opportunity equally afforded.For those without advance directives and now involved in a guardianship proceeding, the party petitioning or otherwise involved in the case should consider addressing end of life decision-making directly in the guardianship hearing when major medical decision-making power may be granted. Although this is not necessary in all guardianship proceedings, older adults with progressive diagnoses that are found to lack capacity are likely to have a guardian at the end of life. The hearing may present a unique opportunity to explore end of life wishes before capacity is further impacted or diminished over time. Clarity about who the surrogate decision-maker is and any indication of the AIP’s wishes’ and values can be invaluable. When available, testimony about conversations addressing end of life care values and wishes from family members, friends, or professionals should be elicited during the guardianship proceeding.
To ensure the guardian’s powers are clear, involved parties can advocate to specifically include “end of life care” in the petition and request the same language in the final guardianship order. This provides an opportunity to address this power before the court while clarifying the role and responsibilities of the parties involved. Once appointed, guardians with major medical powers must directly discuss end of life care questions with the IP. If the IP’s answer is unclear, the guardian must work diligently to discern their ward’s value system and beliefs by reaching out to family, friends, or professionals that may be able to attest to that value system. Particularly when the IP has progressive disease that impacts cognition, the earlier the guardian can have these conversations, the better. By the time these decisions must be made, the IP may no longer be able to indicate their wishes. Even in states that do not allow a guardian to make end of life decisions without a court order, genuine attempts to have these conversations must be made. Although the guardian will have to go back to court before making any decisions, these conversations and indications of wishes and values will be key information for any hearing or request to the court. Unique tools have been developed to facilitate these difficult conversations. For example, tools like Five Wishes, Prepare for Your Care, and The Conversation Project all offer clear questions and topics to address some of the complicated scenarios and care choices at end of life. These complex conversations and decisions are a vital—and often overlooked or ignored—part of the guardian’s role. Some guardians try to avoid the topic all together in an attempt to avoid this responsibility or feared liability, but this attempt to avoid making the decision is a decision in itself.
Sullivan-Wilson,, Tristan Esq.; Lok,, Deirdre Esq.; and Solomon,, Joy Esq.
"End of Life, Elder Abuse, and Guardianship: An Exploration of New York’s Surrogate Decision-Making Framework,"
Touro Law Review: Vol. 38:
1, Article 5.
Available at: https://digitalcommons.tourolaw.edu/lawreview/vol38/iss1/5