In 1990, the Patient Self Determination Act was passed by Congress.¹ This legislation requires healthcare facilities that receive Medicare and Medicaid funding to inform patients about their rights to be involved in decisions about their medical treatment, as outlined by state law. It also directs healthcare providers to inquire about any existing advance healthcare directives, or offer patients information on advance directives. The National Cancer Institute defines an advance directive as “a legal document that states a person’s wishes about receiving medical care if that person is no longer able to make medical decisions because of a serious illness or injury.”²
The Greek philosopher Epictetus said, “No person is free who is not master of himself.”³ An advance directive is fundamental to self-autonomy, an opportunity to assert control over our own lives, with the expectation that our end-of-life preferences will be honored and be inviolable.
In re Guardianship of L.A.C.
In this Case of the Month, In re Guardianship of L.A.C.,4 the court upheld the patient's advance directive despite challenges from the family. L.A.C., an Oklahoma resident, was suffering from progressive Parkinson's disease and dementia. In 2013, L.A.C. executed an advance directive stating she did not want her life extended by artificially administered nutrition and hydration. After losing capacity seven years later, L.A.C.’s sister and adult children filed competing actions to appoint a guardian for her in 2021.
The Court Ruling
An Oklahoma state-appointed emergency guardian approved the temporary placement of a percutaneous endoscopic gastrostomy (PEG) tube to provide nutrition and hydration until the court made a final ruling.4
The court determined that the PEG tube placement conflicted with L.A.C.’s advance directive. The sister filed an appeal, claiming that there was evidence showing that L.A.C. had revoked her advance directive from 2013.4 The Oklahoma Supreme Court ruled that an incapacitated individual has the legal right to cancel their advance directive, but that such cancellation must be proven with clear and convincing evidence. The court upheld the lower court's decision that L.A.C. did not cancel her advance directive, and that inserting a PEG tube went against the terms of her directive.4
The Oklahoma Supreme Court emphasized that court involvement should be a last resort when interpreting advance directives and in supporting the children and affirming L.A.C.’s advance directive. It ruled that once an individual has made their wishes known in an advance directive, those preferences should be honored without the need for court intervention, even in cases of subsequent incapacity.4
Challenges of an Advance Directive
Even though the above court case occurred in Oklahoma, it demonstrates the challenges associated with advance directives, which can be a source of confusion and complexity for healthcare teams to navigate here in California. Some challenges faced by the healthcare team include:¹
- Types of Advance Directives: Multiple types of advance directives exist, frequently intersecting in terms of coverage and timing of activation. The primary healthcare advance directives include the living will and the durable power of attorney for healthcare.
- Lack of Clarity: It is not possible for any advance directive to encompass all potential treatments for every medical issue in every imaginable scenario.
- Communication Barriers: Patients may have difficulty effectively communicating their wishes or providing clear instructions in their advance directives. Doctors may face challenges in understanding or interpreting the patient's intentions, which can result in confusion about the appropriate course of action.
- Varying State Laws: The legality and scope of advance directives can differ from state to state.
- Ethical Considerations/End-of-Life Decisions: Patients do not have the right to request treatments that are not medically necessary, may pose risks, or go against the healthcare provider's ethical beliefs.
- Family Disputes: Such as in the case of In re Guardianship of L.A.C.
Advance directives have their challenges, but they are an opportunity for a person to plan not just for a serious illness, but also the unexpected, and provide guidance to their loved ones and the medical team regarding their healthcare wishes and goals. Despite their importance, the Centers for Disease Control and Prevention (CDC) statistics indicate that only one-third of American adults have completed an advance directive.5 For these reasons and more, a healthcare provider should integrate advanced healthcare planning discussions into visits. In fact, there is a CPT code for these discussions.5 Please visit https://www.cms.gov/medicare-coverage-database/view/article.aspx?articl… for more information.
Risk Management Guidance
- Familiarize yourself with the laws in your state regarding advance directives.
- Engage in discussions about advance directives with patients to ensure they have a clear understanding of the purpose and implications of these documents. Open and honest communication is key in this process.
- Record all discussions about advance directives in the patient's medical records. This documentation helps to ensure that all healthcare providers involved in the patient's care are informed about their wishes.
- As a physician, it is crucial to honor and respect the autonomy of your patients regarding their advance directives. It is important to adhere to their wishes to the best of your ability.
- Encourage patients to regularly review and update their advance directive, especially in light of any changes in their health status or personal circumstances.
- Urge your patients to discuss their advance directive wishes with family.
Advance directives are crucial documents that allow individuals to assert control over their end-of-life preferences. In the case of In re Guardianship of L.A.C., the court upheld the patient's advance directive despite challenges from the family. It is important for doctors to continually educate themselves on advance directives, seek legal advice when necessary, and engage in open communication with patients and their families to minimize confusion, assist patients in making informed decisions regarding end-of-life care, and ensure patient wishes are respected.
Rikki Valade is a Senior Risk & Patient Safety Specialist. Questions or comments related to this article should be directed to RValade@CAPphysicians.com.
¹House SA, Schoo C, Ogilvie WA. 2023, August 8. National Library of Medicine. “Advance Directives.” https://www.ncbi.nlm.nih.gov/books/
NBK459133/
²National Cancer Institute. Dictionary of Cancer Terms. “Advance Directive.” https://www.cancer.gov/publications/dictionaries/cancerterms/def/advanc…
³Spread Great Ideas. 2025. https://spreadgreatideas.org/quotes/quotes-autonomy/#
4In re Guardianship of L.A.C., 553 P.3d 27 (Okla. 2024)
5Ervin, Y., Ludwick, M., & Valade, R. Webinar. Cooperative of American Physicians, Inc. June 2024. “Decisions Before Dilemmas: Empowering Patient and Limiting Risk Through Advance Care Planning.”
https://www.pathlms.com/capphysicians/courses/67613