All too often as an intensivist I am called upon to evaluate/treat a patient who is "Full Code" but who is utterly moribund. My moral fiber is shredded by the thought of instituting critical care measures in a poor, frail,weak, malnourished and cachexic, demented and derlirious nonagenarian (or octogenarian, or septuagenarian) with incurable disease. So, it would be morally corrupt to acquiesce to the "Full Code" order and proceed as an insentient automaton and put such a patient on life support, knowing that nothing good, and a good deal bad will come of it. "A cog in the wheel" as it were.
Something strange and tragic is going on here: While my physician colleagues are most often in consensus about the likely outcomes and the perceived futility (or net harm) of medical care in these cases (as are other informed medical personnel), they often do acquiesce to the "Full Code" order, and initiate the self-perpetuating sequence of futile treatments, disappointments, and indignities inflicted upon dying patients. This disconnect has two possible explanations:
- Patients' values and preferences are vastly divergent from those of their physicians and other informed healthcare providers; or
- Patients and their families have not been properly informed about the prognosis, likely outcomes, and burdens of care. (If denial is involved, this still counts as improper information - as with alcoholism and addiction, physicians have a duty to break down denial.)
So, does my moral repugnance at the thought of taking the moribund nonagenarian, giving him propofol to ablate his consciousness for (probably) the remainder of his natural life; inserting a tube through his vocal cords and thus making it impossible for him to speak; knowing that he's delirious/demented and has little hope of knowing what's going on and is probably in fear or distress; physically tying down his hands to the bed so that when he reacts instinctively to pull out the tube that is gagging and choking him, he cannot; inserting various other tubes and medical devices into his nose, urethra, anus, mouth, and through skin incisions into various other bodily structures; performing CPR and having my fellow healthcare workers feel and hear the breaking of his ribs and sternum; knowing that this poor patient will never leave a healthcare institution and return home - does this moral abhorrence derive from a set of values that I have about life and humanity that are divergent from those of the patient and his family? Or does it result because I have different information about what these procedures entail and what their effect is likely to be? (That effect candidly amounts to torture. I am being asked to torture the poor fellow.)
The answer is obvious because people are more alike than they are different. I have an abhorrence to these acts because I (and other informed healthcare workers) understand them better than the patients/families - there is "asymmetrical information" as economists would say. Why would this be?
This results because of the "feckless physician" - the squeamish nebbish who believes that guarding the family (and himself - especially himself) from a vivid description of futile (and harmful) care at the end of life and the emotional reactions consequent to this discussion are more important than avoiding the horrors of actually delivering that "care" and inflicting that suffering on the inexorably dying. And here I will state it: the feckless physician, in making this choice, is morally corrupt.
He rationalizes this away by invoking the misguided principle of autonomy - the notion that people should be able to make choices for themselves. But this ethical principle has certain premises and preconditions, and it is easy to pretend that they have been met - namely that the preconditions of information and understanding have been met.
So, when the patient (or, often his surrogates) is/are making choices such as "Full Code" that seem at odds with his moral intuitions and common sense, the feckless physician deludes himself into believing that he has imparted the requisite information about the procedures and likely outcomes in an adequate manner, and he acquiesces. He is satisfied to invoke the foundationally precarious principle of autonomy to justify the indignities that are about to befall the poor, dying, nonagenarian.
And he calls the intensivist.
We are all educators in this. The term 'doctor' derives from teacher. The belief that this teaching should have occurred earlier is faulty. There is no great time to have this discussion. The clinic is the most time packed and often least likely place for it to occur. Families do not bring in their elderly grandpa for a 'dnr/dni' visit to the clinic in my experience. I have found that the most likely time to do this talk is during an ER visit, a hospitalization or in the ICU. I try to do it before the patient is incapable of having a say in this. I try to tell them that, even though the patient continues to return to their previous level of function, the pattern of repetitive hospitalizations leads me to believe that they are likely in their last year of life and some planning should occur. And I tell them 'if this were my father I would...' And this gives them some freedom from the guilt of making the hard choice to let go. But I think this conversation is more likely to happen in crisis or near-crisis then during the routine and because of that those of us who work in the ER and hospital should be ready to educate whenever the opportunity arises.ReplyDelete
Javad - totally agree with everything you say. These decisions cannot be made in the clinic - unless as you note there is a pattern of repeated hospitalizations and declining functional status. My diatribe refers in fact to what I consider the failings of inpatient doctors who have exposure to the patient before I do, when the writing is already on the wall, eg, as you mention, the ER especially, the surgeons, the hospitalists, and indeed some (many?) of my intensivist colleagues.ReplyDelete
Keep up the good work! I would love to hear more about your takes on current therapies like hypothermia and TPA where the evidence seems pretty mixed.ReplyDelete
When is this appearing in the New Yorker?ReplyDelete
This is why the nephrologists can be the hero sometimes. They're one of the few who can (and do) cite futility and refuse to do dialysis. All the other docs circle, wringing their hands, whispering frustrations of futility to each other, but to the family give tepid assessments of harm to the patient.ReplyDelete