Advance Directives Revisited
Key words: Advance directives, end-of-life care, advance care planning, living will, healthcare proxy, durable power of attorney, decision-making capacity.
While advance directives are now a recognized component of medical care and patients are urged to have these prepared and available for when the need arises, many physicians fail to take sufficient time and make a significant effort to review the content of these documents with their patients, assuming that this important aspect of medical care is handled between patients and their attorneys. Furthermore, although there is a wealth of preprinted and online documents on advance directives available to the consumer, and patients in many cases merely check off or circle which paragraph or answer choice they desire from a list of several options, terminology may at times be difficult to interpret. The end result may leave physicians finding themselves at odds with family members or healthcare proxies as to what the patient truly intended prior to losing his or her decision-making capacity.
To avoid such conflicts, it is important to discuss what is contained within an existing advance directive with any patient who still has the capacity to make his or her own decisions, enabling modifications to be made with regard to the patient’s current wishes and circumstances. Clearly, physicians must be comfortable in first determining whether their patient has the capacity to continue to make such decisions. In addition, caution is advised so that patients are not judged to lack capacity merely because of an inaccurate diagnosis in the chart, such as wrongly being labeled as having dementia or having hearing deficits, expressive aphasias, or other medical conditions that do not impair decision-making capacity but merely complicate communication ability. What follows are two cases that illustrate some of the issues that may arise during end-of-life care, even with the presence of an advance directive. We also review the history of advance directives; discuss patient autonomy and capacity; outline some challenges with regard to creating and executing advance directives; and review the terminology used in advance directives, during advance care planning discussions, and with regard to end-of-life care.
An 81-year-old woman was admitted to the intensive care unit after falling from a standing position, resulting in bilateral subarachnoid hemorrhages and a left maxillary bone fracture. The exact cause of her fall could not be ascertained. The patient required initial intubation and was placed on a ventilator due to trouble with maintaining proper oxygenation.
The patient had an advance directive indicating that she did not want any invasive measures in the setting of cardiac arrest. It also stated, “If I have a terminal condition and death is imminent, I do not want any life-prolonging treatment, including intravenous nutrition or other medical treatment.”
Despite her physician’s view that it was too early to decide whether the patient was in a terminal state and “death was imminent”—in fact, the physician felt that she might even be able to return to her baseline functioning—the family asked that all treatment be withdrawn. They expressed that this was her wish in her advance directive, and they wanted to honor it. After considerable discussion, the physician agreed to the family’s wishes, and the patient died shortly after being taken off mechanical ventilation.
An 86-year-old woman was admitted to the hospital after falling and sustaining a fractured femur. She had a stroke several years earlier that left her with an expressive aphasia. She had a poor caloric intake that caused her to lose weight over the previous few months. During the patient’s current admission, her in-hospital healthcare providers labeled her as “demented” after not being able to communicate with her, and they were in contact with her family regarding desired options for care. Her physician judged her as not being able to eat sufficiently, and her family insisted on having a feeding tube placed.
Upon further review, an advance directive completed by the patient decades earlier was discovered, but there was no information available as to whether it had ever been reevaluated by the patient since its execution. Her advance directive stated that she did not want to be fed by artificial means if she had “an incurable injury, disease, or illness certified to be a terminal condition by two physicians who have personally examined me, one of whom shall be my attending physician, and the physicians have determined that my death is imminent and will occur whether or not life-sustaining procedures are utilized and where the application of such procedures would serve to only artificially prolong the dying process.” What made things even more complicated was that the geriatric consultant was able to use hand signs to communicate with the patient and believed that she was fully able to comprehend what was being asked of her, as she responded appropriately to questioning and demonstrated the capacity to make her own decisions. Upon further questioning by the geriatric consultant, it was clear that the patient was adamant about not wanting a feeding tube inserted.
Because the patient did not meet the criteria delineated by her advance directive at the time of her admission, and had she been unable to express her own wishes, her family’s desires for a feeding tube to be inserted would have been honored by her physicians given no other direction in the available advance directive. After careful review and discussion, however, the patient’s own wishes not to have a feeding tube were honored. The geriatric consultant demonstrated the patient’s ability to comprehend what was being asked and to respond appropriately, and other healthcare professionals were consistent in their interpretation of the patient’s wishes at this time. Her family eventually agreed with her decision and stopped pressing for an artificial feeding tube to be inserted.