Decisions–we make them everyday. Some minor (latte or expresso today?), some major (this car, or that?), some life changing (do I marry this person?), some life ending. It is the latter that I wish to comment upon but to the exclusion of physician assisted suicide and euthanasia. The life ending decisions that I shall address deal with withdrawal of non-comfort care (from here on referred to as “withdrawal of care or ‘withdrawal'”). Let me begin with an example.
In 1985 I was a freshly minted attending pulmonary/critical care physician working in a 5 man single specialty group. I was on our ICU rotation when the housestaff (residents) presented the case of a late middle aged woman who had been admitted overnight in respiratory failure requiring mechanical ventilation. While I do not remember the specifics of the case I do remember this was not a “quick fix” situation and the patient remained unresponsive for a number of days. What I do remember is meeting with the family on a daily basis and that after two days of no improvement (but no clinical deterioration) the family insisted that she be removed from “life support.” They argued that she had told them previously that she had never wanted to be on life support and they wanted to honor her wishes. There were no written “advanced directives”, only the (permitted) “substituted judgement” of next of kin. I found myself in a bind, acknowledging the family’s request but at the same time believing the patient had a reasonable chance of recovery. Over time the daily discussions became more contentious as I refused to withdraw ventilator support arguing that the patient was showing some signs of incremental recovery while the family continued in their insistence that their loved one’s wishes be honored. Fortunately for all, the patient finally became conscious and within 48 hours was able to be successfully removed from the ventilator. By the next day the patient was able to converse and, with family present, I explained to her what had happened and then asked, “If something like this happens again, do you want to be resuscitated and put back on the ventilator?” Her emphatic response was, “You’re damn right I do!”
I present this as not a “what a good boy you were” moment but as an example of what physicians, and families, can face on a daily basis across the nation (and for that matter, the world). Decisions regarding medical treatment, especially resuscitation efforts and/or end of life, can be daunting for many and, until the moment arrives, often ignored. For you see, when really thinking about it, one is contemplating one’s own mortality. Comments like the above patient’s could have been just offhand (her’s was) or the result of thoughtful discussions with her family and/or physician. Some patients just hope that the family and physicians can “figure it out” if the patient is unresponsive or they can go to extremes like having “Do Not Resuscitate” tattooed on their chest (case reports). Written instructions, termed “advanced directives,” can be very helpful in guiding physicians as to what resuscitative care is to be provided while also providing guidance or insight to the family as to how the patient wishes to be treated. One of the key recommendations regarding advanced directives, however, is to discuss them with those who may need to determine a response to physician recommendations when the patient is unable.
One should understand that advance directives are not written in stone but only provide guidance. While physicians are obligated to follow the basic instructions of an advanced directive as this is a legal document, patients can change their mind at any time. On more than one occasion as a critical care physician I had been called to the ER to admit a patient with known advanced directives (and not infrequently a terminal condition) to the ICU after arriving responsive in the ER, revoking their directives, then collapsing and triggering resuscitation efforts. Although most rarely, if ever, survive their hospitalization, it is not an absolute as some will live to leave the hospital once again often with re-established advance directives. With all this said, let me leave the topic of advanced directives with some rules: 1) advanced directives are a good idea, 2) discuss those directives with those who may have to make health care related decisions for you if you are unable and, 3) give your physician a copy (in this day and age the directives should then placed in an electronic medical record for quick reference).
I have previously written (see “The Four Reasons“) as to what I perceived as being the basis for decision making, usually by family members, as it pertains to certain treatment, or not, of their ill loved one. Along those lines is one of the most difficult and challenging decision a physician has to make–that of withdrawal of care. Picture a critically ill patient with multi-organ system failure with continued clinical deterioration despite aggressive therapy or an elderly patient with a massive brain bleed both of whom are supported by mechanical ventilation. In either case survival, let alone meaningful survival, is extremely poor. If the physician has been fortunate enough to have cared for the patient for several days and has established a rapport with the family (in some institutions where shift work is routine a physician who has dealt with neither the patient nor family can come on duty at a time when the withdrawal of care discussion needs to occur) the withdrawal of care discussion may be a little easier to have. While each physician has their own style when broaching the topic of withdrawal vs. continuing care, physicians vary in how they leave the final decision to family but it is usually in one of two basic ways. In either, after the current state of the patient is explained and, hopefully, the family has been assured that comfort measures will continue, then the options–a) “We can continue doing what we’re doing or we can decide to withdraw; you decide,” or b), “We can continue what we’re doing or we can decide to withdraw; my recommendation is _______ (continue or withdraw).” My bias is option “a” is cruel, burdensome, and is the physician shirking their ultimate responsibility to provide the best advice possible. On more than one occasion I have encountered family members who, when they had been presented with option “a”, refused to decide to withdraw as they feared they would then be burdened with the guilt of “killing” their loved one. With option “b” the family is given the option of agreeing (or disagreeing) with the physician’s recommendation. The physician is put in the position of being the “decider” with the family providing their input regarding the physician’s decision. As nuanced as this seems, I have found (because I’ve asked) “b” to be less burdensome to the family and many have been relieved not to directly make the final direct decision.
So there, some perspective on the difficult decision making that can confront us all. I shall, however, after writing the above and thinking about it some more, make a brief comment afterall regardiing decisions pertaining to physician assisted suicide and euthanasia. We physicians are constantly looking for the best ways to advise patients regarding medical treatment decisions. In the Hippocratic oath one can find the passage, “To none will I give a deadly drug, even if solicited, nor offer counsel to such an end…” and in the Judeo-Christian religions the commandment, “Thou shall not kill.” At least for this physician that was all the advice needed.
(If you wish to leave a comment, click on the particular blog title on the sidebar. This will open up that topic again and at the bottom of the narrative there will be a comment section). Earlier blogs: Inaugural, Oscar, “That will be $108”, SODA POP, On the Evolution of the Medical Record, can be found with “search.”