Katie Ries, MSW, LMSW, a social worker on the Supportive and Palliative Care team, is championing reform in Iowa’s guardianship laws to protect the rights of terminally ill patients. In her role, Ries has witnessed how the state’s legal requirements for court approval in end-of-life decisions create distress for families and delays in patient care. Through her work with patients, guardians, and lawmakers, Ries is advocating for legislative change to allow guardians to make timely decisions, hoping to align Iowa’s policies with those of most other states.

One significant aspect of her work involves navigating the complexities of guardianship rights for terminally ill patients. Under Iowa law, individuals receiving supportive and palliative care at UI Health Care are assigned a court-appointed guardian if deemed unable to make their own medical decisions. This guardian—often a close friend or family member, though sometimes a professional from a guardianship agency—holds significant responsibility for the patient’s care plan. However, the legal limitations on these guardians’ decision-making power often lead to delays and challenges, underscoring the need for reform.

In Iowa, certain decisions, such as those regarding life-sustaining procedures, require court involvement and approval. For example, state law mandates that a guardian obtain court approval to make end-of-life decisions on behalf of the protected person. The acting guardian must petition the court for approval, usually with an attorney’s assistance, which can cause significant delays.

“Almost every time I speak with someone acting as a [court-appointed] guardian, they are unaware of this law,” Ries explained. “This lack of awareness often results in unnecessary suffering for the patient and intense frustration and distress for the acting guardian, the patient’s family and friends, and the health care team.”

Although there is an expedited process for a guardian to obtain court approval, it can still take days, weeks, or even months to complete. During this time, every moment may be critical for the patient involved. For patients with a terminal diagnosis, this process can delay transitions to hospice care, which provides comfort and care at the end of life.

There are some legal workarounds. In Iowa, a health care power of attorney (HC-POA) agent can make end-of-life decisions even if there is a court-appointed guardian. The hierarchy of surrogate decision-makers starts with a valid HC-POA completed by the patient before any guardianship becomes active. In these cases, the HC-POA’s decisions take precedence over those of a court-appointed guardian and do not require court involvement. Sometimes, the HC-POA and the guardian are the same person. If there is no HC-POA or guardian, the responsibility falls to the Legal Next of Kin (LNOK): the spouse (even if separated or estranged), then adult children, parents, and finally, adult siblings.

Ries emphasizes that only the acting guardian must obtain court approval for end-of-life decisions. In contrast, the HC-POA or LNOK can make these decisions without court involvement, even if they haven’t been in contact with the patient for years. Many patients are unaware of this legal structure, adding to the emotional and legal complexities. Ries stresses the importance of completing Advance Directives to ensure individuals have control over who makes decisions on their behalf, without needing court involvement.

Over the past two years, Ries has become an advocate for legislative change to better serve patients and their families, especially when there is a court-appointed guardianship. She was able to bring this issue to the forefront though her role on the Board of Directors for the Hospice and Palliative Care Association of Iowa (HPCAI). Ries and other HPCAI members have since collaborated with state legislators and lobbyists, proposing that when an attending physician confirms and documents a terminal diagnosis—meaning the patient is expected to live six months or fewer—the patient’s designated guardian should be allowed to make end-of-life decisions, without court approval.

This proposal has sparked sensitive discussions in the legislature. One concern is that it could grant too much authority to guardians. On the other hand, the current laws are already having a real-time impact on patients’ care, often causing more harm than intended. If Iowa were to amend this law, it would join the majority of U.S. states—only eight states and the District of Columbia currently prevent guardians from making end-of-life decisions, according to the NIH.

Ries and the HPCAI found an ally in State Representative Bill Gustoff of Des Moines, who helped advocate for a bill amendment to address this issue during the 2024 legislative session. Although the bill initially passed through the House Judiciary Committee and made it to the House floor to be debated, it was ultimately pulled during the second of two funnel weeks—sessions designed to move bills through committee—over concerns about some of the bill’s wording.

Ries remains committed to advocating for this change. “The next steps are to educate more people about the issue and build broader support for the bill,” Ries said. “While the outcome wasn’t what we hoped for, we see this as an opportunity to gather more backing and refine the bill for the next session. We’re aiming to have it sponsored by the Health and Human Services Committee, which we feel may be more suitable for this type of legislation. Our goal is to reintroduce the bill in the 2025 session for consideration.”