“Doctor, please do everything!”
I am quite sure that at one point in your life, you have either been a patient, a relative, or a friend who found himself involved in making crucial medical decisions and felt helpless, lost, and seeking answers. This is a difficult place to be if one is bereft of medical information and more so if compounded with the absence of spiritual, emotional, and financial support. Oftentimes, one is left to question whether the final decision made was the right and ethical thing to do, and if the outcome would have been different if other options were explored. The what-ifs in the eventuality of failure may weigh heavily for the one who made the final call and worse, be that memory that triggers one to both relive and regret the painful experience.
Last Wednesday, the webinar hosted by the Catholic Physicians Guild of the Philippines centered on both legal and end-of-life concerns in neonatal care. It was a compact discussion that centered on the role of a doctor in shared decision-making, being the initial figure and eventual co-navigator to life-altering decisions. From the lectures, key takeaways went beyond neonatal care and provided guiding principles that were universal in content. If conscientiously applied and constantly practiced, these are guaranteed to be beneficial to all parties involved, help provide the ingredients for a better doctor-patient relationship, and on occasion have been the springboard for unexpected and lasting friendships.
“A physician’s warmth and trustworthiness impresses upon the parents first, followed by his intelligence and wisdom.” This neonatologist managed to convey in words what a physician should always strive to be. Granted that one is expected to be proficient, being sincere and truthful is just as important, most especially when involved with making end-of-life decisions with the family. To borrow her words: ”Such situations are extremely emotional ones and for the attending may pose challenges, having to face his own questions while trying his best to accompany distressed parents as they start to grieve for the loss of the ‘perfect baby’ that they had in mind even before his or her life approaches its end.”
Our role. She mentioned the absolute necessity of helping create an atmosphere that would be conducive to discussion and invite proactive participation. In developing a course of action, the physician needs to identify the principal decision-makers, establish that the issue at hand is an ethical problem, provide relevant facts, discuss treatment options and consequences to include the possibility of considering comfort care. Through it all, the physician should always be respectful, communicate in a language easily understood, acknowledge that each and every family has set cultural and religious beliefs, and ensure enough time is given to them to absorb and understand the situation. While it is wise to encourage questions, be careful in giving too much information that may sometimes confuse rather than provide needed clarity. Try to be as accurate and close to the working diagnosis. Update the family on a regular basis and when necessary, so that they may be apprised of the patient’s condition and what to expect. These are all in keeping with the ethical concepts in the care of neonates.
Key decision-makers. Having laid out what are musts on our end, how should one decide? While a large part often is based on a physician’s recommendation, in withdrawing or withholding treatment, parents are still the ones with the final say. Difficult as it may be, it would be helpful to remember these: one, that all actions taken should always be in your infant’s best interest, and second, treatment should not be burdensome to the infant and family or involve extraordinary means. If conflicts in opinion may arise, all efforts must be made for parents to reach a consensus. In the host of suggestions for conflict resolution, one was beautifully framed, “broaden the parents’ moral community.”
A friend once told me that decisions can never be wrong. To this day, I continue to try to make sense of what he said. No one has the algorithm or answers to life’s numerous questions. One can only pray that he may always be blessed and at peace with every decision made.