New Year resolutions are sometimes easy to make but hard to keep. Resolutions are choices, choices to live on and to better ourselves. For patients who are critically ill, resolve is often in short supply. So, to physicians reading this I ask that one of your resolutions this coming year is to speak with patients about their end of life choices and help other physicians do the same.
Many physicians are either reluctant to broach the subject, or not very good at discussing these issues, or both. Many feel that they will “cross that bridge when they get to it,” that there is no need to frighten their patient or give the appearance of breaching the trust between them. These are understandable rationales, but at odds with the physician’s obligation to enable the patient the ability to exercise control over themselves when they will need it the most, that is, when they still have capacity to listen, understand, deliberate and decide. The longer you wait the harder it gets.
Patients need help making end-of-life choices before he or she is painted into a corner of solitude and doubt. Decisions too quickly arrived at and without the inclusion of all material information, reduce or eliminate the potential of real choice. For example, surveys indicate that while 67% of patients wish to die at home, only 24% do so.
Often the problem is confusion and fear. Confusion, lack of information and lack of understanding leads to fear. Fear can freeze cognitive decision-making processes. This will often result in the patient or the surrogate decision maker declaring, “I want everything!” or “Doctor you decide.” Yet, consent to treat or not to treat must be obtained from the patient or surrogate, especially in situations of continuing or withholding life sustaining treatment and consent must be based on the information provided. Consent without being informed is not consent under the law. This can also create concerns of liability risks for physicians.
Such discussions should ideally begin before there is any serious illness. If the discussion begins after the onset of serious illness, attention must be paid to the varying trajectories of disease and the golden opportunity to make the patient’s wishes clear before any loss of capacity. Discuss patient points of view when explaining risks of alternative modes of treatment. Keeping the lines of communication open and ongoing makes it easier for both the patient and the physician.
As a clinical bioethicist I am almost always called in late in the game when the patient is in the hospital, usually in the ICU. I introduce myself and tell the patient “I am here to make sure your wishes are made clear and are respected by the physicians and nurses. I am here to make sure you are told everything about your condition and any questions that you may have will be answered.” I want to let the patient know that they can exercise control over what happens to them. Yet, all too often the patient does not have capacity and families are distraught and torn over what to do and delay doing anything. Waiting for a word here and there to give them hope when hope has long past. Delay may increase the suffering of the patient and run up costly and unnecessary medical bills.
Lastly, to understand the challenges of constructing a well thought out advance health directive make sure you have one.
May your New Year be filled with good choices.
All the best,