Planning for the Future: Legal and Medical Components of End-of-life Decisions by Sheng Tong

Talking about end-of-life care is challenging for many people, health care providers included. This is particularly true if a patient completely loses the ability to communicate. In March 2021, the Jaharis Health Law Institute hosted a webinar, which addressed a broad array of concerns central to end-of-life care.

Dr. Anuj K. Shah is an integrative family physician of Heartland Health Centers. He gave an insightful presentation on how effective communication can facilitate the achievement of important end-of-life goals. Decisions regarding end-of-life care are deeply personal, as most patients during end-of-life care contend with fears, needs, and desires. End-of-life decision-making is an ongoing and dynamic process among the patient, their family, and their physician. Patients and their families value open and honest communication. It is therefore critical to have a patient-centered communication to foster a respectful relationship with the patient and to develop a treatment plan.

A physician should make sure that the patient understands the communication, including the patient’s understanding about treatment options. Dr. Shah shared his experience with setting and achieving that goal. For example, he employs an “educate-me-back” technique: when he explains treatment options and consequences to a patient, he always asks the patient to explain these concepts back to him in the patient’s own words so that Dr. Shah knows that the patient understands these concepts and can make an informed decision.

When the patients lack decision-making capacity, a physician would coordinate with the patient’s family to determine treatment options. During that process, by interacting with a patient’s family and friends, a doctor may identify the patient’s end-of-life decisions as if the patient was still responsive.

From a legal perspective, the questions of who may make medical decisions for individuals who have lost capacity is more complex. As the Founder and Managing Attorney of Rao Legal, LLC, Ms. Mitha Rao has observed that too often people assume the answer is their beloved ones or best friends as “they know me.” The reality is that these beloved ones or best friends may not be the ones who can legally make these decisions, unless these individuals have been designated by appropriate legal documents such as advance directives. Ms. Rao offered insights into the role of advance directives in end-of-life decision making.

For example, an individual may appoint an agent to make medical decisions for the individual by executing a health care power of attorney. Having a designated surrogate decision-maker would eliminate the need to institute a guardianship proceeding to decide the individual’s best interests. That often can be too late in emergent situations. A living will is another type of advance directive that states a person’s preferences for end-of-life medical care if he or she later could not voice decisions. In Illinois, a living will permits a person to give medical directions that impact the end-of-life care, including withholding or withdrawing death delaying procedures.

An advance directive could be important in communicating end-of-life issues. Without an advance directive in place, as mentioned by Dr. Shah, family members and doctors are left to guess what the patient would prefer in terms of treatment. That occasionally leads to unintended consequences. These discussions are important to have, and decisions are important to make before there is a critical or urgent need because the appropriate time and consideration can be had outside of a crisis situation.