Continuing with my previous post, “How Long Do I Have, Doctor?”, my reading of Death Foretold has revealed more illuminating information about doctor-think and the ways in which a doctor’s sometimes unconscious decisions about how to present information about the probable course of his patient’s disease impacts that patient.
Consider this sobering fact:
Whether and how physicians communicate prognoses may be affected by self-interest. Physicians may choose to offer a particular prognosis, whether favorable or unfavorable, if they feel that it will encourage the patient to comply with their recommendations, with the professional or financial advantages that may attach to this. For instance, patients may be encouraged to enroll in trials or experimental chemotherapy; enrollment of patients in such trials, regardless of whether it benefits the patient, can advance a doctor’s career. These behaviors are not usually as sister as the doctor wanting to profit financially from a patient or frankly deceiving a patient: physicians themselves are often not consciously aware of these implications of the use of prognosis. [p.54]
Or, from the department of “bedside manner”, Christakis offers this deplorable and unfortunately common professional tactic for avoiding emotionally-charged conversations:
“Terminal candor” or “truth dumping” is doctor-speak for the practice of unduly rapid or excessively comprehensive prognostication. They deplore it as irresponsible, though they recognize that it is not uncommon. Truth dumping amounts to an avoidance of responsibility, in several senses: physicians thereby avoid having to engage in a lengthier, more humane interaction; avoid having to face or discuss the limitations of their ability, and avoid having to address the implications of such bad news for patients. They can, however, conveniently claim that they have told the patient “the truth”. [p. 109]
In both of the above , it is clear that– contrary to what patients would like to believe– often their doctors choose (albeit often unconsciously) to allow self-interest to formulate how they communicate with their patients. An understanding of this possibility could well be an important factor in the patient’s evaluation of the course of action that will provide the best likely outcome for he/she as a unique individual. In other words, the assumption that your doctor always has your best interests at heart may be a faulty one, given this doctor’s exhaustive survey of his medical peers.
The author reveals several other ways in which doctors create emotional distance between themselves and their patients:
According to physicians, the communication of unfavorable prognosis should take place in stages. (p.108) In giving the prognosis in stages, doctors protect themselves. Communicating bad news gradually is a means of discouraging “meltdowns” and extreme displays of emotion in patients, outbreaks that might be unpleasant or time-consuming for physicians to cope with. The patient’s experience and expression of emotions are thus both controlled. (p. 110)
Although this tactic is certainly pragmatic in terms of allocation of time and budget constraints, it effectively minimizes the human connection between the doctor and his patient by partitioning off and thereby ignoring the tremendous emotional and spiritual implications of a “bad news” prognosis that ultimately implies that death is unavoidable.
Doctors may also use statistics to distance themselves from their patients, while appearing quite knowledgeable and professional:
Indeed, using statistical prognostication is a way to prognosticate to a patient while not really prognosticating about a patient. Such prognostications, while appearing to have scientific authority and significant content, are at the same time devoid of affect and of particularity. This information is not related to feelings or hopes that patients may have about their future. Finally, it ignores the fact that patients are often less able than their doctors to make sense of statistical estimates. [p.116]
Worse yet, in John’s case, his surgeon– who was apparently exasperated by John’s quoting of survival statistics for colon cancer patients with a similar diagnosis– used statistics as a slap in the face. Saying, “You want statistics? I’ll give you a statistic: you have a 10% chance of living for 5 years.” (!!!) This devastating comment was delivered to a colon cancer patient who has just survived emergency surgery (and subsequent diagnosis of cancer for which he was completely unprepared) and was now facing liver mets. The surgeon’s cruelty was intentional, clearly aimed at establishing his own power at the emotional expense of his patient.
Here’s one final really tragic reality from this book:
Patients may be twice removed from the truth of their disease and its prognosis: first, because physicians themselves generally believe the prognosis to be more favorable than it actually is; and second, because they generally do not communicate their actual beliefs to their patients. [p. 123]
The author notes that doctors find it more acceptable to communicate their true opinions about prognosis to their colleagues than to patients and their families. Note this sad example: of a young doctor’s experience doing rounds in the ICU with the medical team:
Our attending doctor, who was a world-famous intensivist, accompanied us into a patient’s room. The patient was an elderly woman who was critically ill and comatose and had severe lung failure. The room was filled with her family, and they asked the attending if their mother and grandmother would survive. My attending said it was “impossible to say” and that “only God knew.” After we left the room, when we were further down the hall, I said to him: “You’ve been practicing intensive care for 20 years; you literally wrote the book in this field. Surely you must have some idea about whether that patient would live.” And he said to me: “Oh, yeah. She’s not going to make it.” And that was it! I was shocked at the discrepancy between how precise and definitive he was willing to be with us and how evasive he was with the family. Of course, he was right: the patient died 24 hours later.
In withholding this very vital prognosis from his patient’s family, this otherwise very competent doctor did a shocking disservice. The 24 hours between his casually tossed-off prognosis to his colleague and his patient’s death could have been a time for the family to pull together in facing the inevitable and to create closure with their loved one. In place of comforting memories that might have offered a lifetime of consolation for the survivors, the family was effectively abandoned by this doctor, utterly unprepared for the death that he alone knew was coming.
How can patients and their families work around this kind of doctorly aversion to truth-telling to get the honest prognosis they need? I wish I had an easy answer. All I can offer is based on the sum total of our interactions with John’s doctors and their sometimes massive egos. It seems fairly obvious to me that in the case of the story above, the attending doctor was guilty of the same kind of power trip that John’s surgeon pulled on us. Since the ultimate root of gratuitous displays of power is the ego, a carefully-crafted appeal to that ego (while appearing to bow before it) might have a chance of extracting the desired honest prognosis. Consider this possible response to the doctor’s stonewalling:
Dr. X, I am asking you for your carefully considered professional evaluation [heavy emphasis on this term, with the subtle implication that the doctor’s previous evasion was not totally “professional”– which encourages him to demonstrate his vast knowledge by giving you the true prognosis] on how much longer my mother has to live. We have so much respect for your vast experience in cases such as hers [gives the illusion of pandering to his power]. If her time is short, there is so much that we need to do and every minute has enormous value. [You, her doctor, have a moral responsibility here– and I’m not going to let you slither out of this one.]