Title: Variables that influence the medical decision regarding Advance Directives and their impact on end-of-life care.

Background: While on the inpatient palliative care service, I’ve noticed that advance directives are given little attention and minimal weight when making end-of-life decisions with a surrogate decision maker. Specifically, I had a case of a 90-year-old woman with severe dementia in a bedbound state who was unable to express her wishes. She was admitted for septic shock from recurrent UTI (her 3rd visits in a year) and the medical team’s recommendation was for comfort care. Her advance directive stated “I do not want my life to be prolonged and I do not want life sustaining treatment…to be provided or continued…if I am terminally ill…and I want my agent to consider the relief of suffering and the quality as well as the extent of the possible extension of my life in making decisions…” The daughter who was MDPOA reported that she wanted the patient to continue to be treated because she had “beaten the infection 3 times this year”. The daughter was not concerned about the patient’s quality of life, she told me that she “just wanted my mom to be alive”. I wonder what affects medical providers’ decisions to honor an advance directive?

Design and Participants: This study was a narrative literature review of 25 articles published between 1997 and 2018. Search parameters included the keywords “advance directives”, “living wills”, “physicians”, “attitude”, “decision making”, and “advance care planning”. The authors considered articles that identified the physicians’ attitude towards the directives and what variables affected their decision making and/or the effects of having directives on end-of-life care. Original articles (observational studies, cohort studies, clinical trials) and systematic reviews with quantitative and/or qualitative methodology were also included.

Results: The main factors that influenced healthcare professionals in their use (or lack thereof) of the advance directive for medical decision making were respect for autonomy, lack of medical knowledge and experience in the use of directives, medical paternalism, and the difficulties in defining the patient’s prognosis, legal concerns, family influence, and cultural and religious factors.

Respect for autonomy was considered extremely or very important as a factor in medical decision making in 82.2%-96.6% of physicians. Physician knowledge and experience in the use of directives directly correlated with their use and lack of deeper specific knowledge to counsel patients was one main barrier to utilizing the advance directive. There is evidence to suggest that medical judgement is considered by physicians to be more important than following an existing AD, depending on the patient’s clinical condition. Paternalistic attitudes of what is best for patients as well as perceptions that patients do not understand the true situation of their illness were found to interfere in the medical decision-making process. Legal considerations were found to have limited effect on decision making, except in more complex situations, such as when there is disagreement between family opinions and an existing directive. Family influences also affected medical decisions. Although 75% of physicians reported that they will honor patients’ directives, regardless of family opinion, those who did not comply with a patient’s directives considered family opinion an important factor in their decision. Cultural and religious factors can play a role in the implementation of advance directives. It was found that Asian physicians tend to discuss more with family and relatives and may therefore not respect existing directives. 61.8% of Thai physicians never asked terminally ill patients if they wanted to undergo CPR but 94.5% of them discussed it with family members. It was found that Protestant, Catholic, and non-religious physicians interrupted advanced life support more often than Orthodox Greeks, Jews, or Muslims.

Overall, most studies examined by the authors showed that the existence of some type of advance directive accounted for lower rates of invasive interventions in the last days of a patient’s life, including hospital length of stay, ICU admission, utilization of CPR, use of vasoactive drugs, mechanical ventilation, artificial nutrition, and hemodialysis. 

Commentary: This study confirms a lot of what we intuitively know about advance directives. Respect for autonomy is the presumed purpose of the advance directive and the main motivation for physicians to utilize it. Physicians with knowledge and experience with advance directives and/or work with chronically or terminally ill patients and with palliative care have a higher compliance with following an advance directive. Similarly, one of the main barriers to usage of AD is lack of experience with them. Interestingly, this study found that another main barrier to usage of the advance directive is clinical condition, medical paternalism, and the idea that patients do not understand their true clinical condition. The nuances in understanding and clearly explaining a patient’s complex medical condition and prognosis, presenting it with the inherent uncertainty that exists, understanding patient and family wishes, making treatment recommendations, and coming to a treatment plan with shared decision-making exemplify the struggle that I experienced in the example above. In this study, legal and family issues contributed to a lesser extent to not implementing the directive.

As expected, having advance directives contributes to less invasive measures in terminally ill individuals and at end-of-life.

This study is limited as it is a narrative review that includes studies randomly selected by the authors. Some studies looked at physician attitude toward advance directives while others focused on the decision-making process at end-of-life. These different endpoints may lead to bias. Included studies were only those in English, Portuguese, and Spanish. Relevant publications in other languages may change the data or provide further cultural context to the utilization of advance directives. Finally, many studies examining the impact on advance directives and end-of-life care were observational and included diverse populations and illnesses.

Areas for future study might include a more up-to-date review on the prevalence of advance directives since the COVID pandemic. In addition, it would be interesting to examine how to accurately reflect a patient's wishes in an advance directive regarding a potentially treatable but also life threatening and sometimes terminal illness such as severe COVID pneumonia.

Bottom Line: Advance directives are clearly valuable in honoring patient’s wishes at end-of-life. There remains tension between the ethical values of autonomy, beneficence, and non-maleficence in implementing an advance directive. In depth examination of a patient’s medical condition and prognosis, patient’s wishes as represented by an advance directive, family considerations, legal considerations, and cultural and religious considerations are all necessary to effectively utilize an advance directive to guide end-of-life decisions. 

Source: Arruda, L., Abreu, K., Santana, L., & Sales, M. (2020). Variables that influence the medical decision regarding Advance Directives and their impact on end-of-life care. Einstein /, 18, ERW4852.