Recently, a former clinic patient was admitted to the hospital. This man and his family had been struggling with his cancers for several years. His first cancer had led to a total voice box removal with tracheal stoma placement years ago, which prevented him from talking. His post-operative condition made communication even harder for this non-English speaker, who then depended upon an English-speaking family member to translate. Then, two years ago, he was diagnosed with a new and unrelated cancer in another part of his body, for which he was given full treatment, including surgical resection. He had been seen by a variety of specialists over the years, many of whom raised alarms as his initial cancer returned and continued to grow, gradually blocking off the path from his mouth to his esophagus. For the past 6 months, both his surgeon and his cancer doctor had urged elective preemptive placement of a percutaneously-placed feeding (PEG) tube to maintain good nutrition. The patient and his family consistently refused the PEG tube for several months, declining to pursue what they perceived as an overly-aggressive intervention not yet necessary since he was still capable of eating.
Finally, one weekend, after two weeks of minimal oral intake, he came to the emergency room severely dehydrated. The cancer had progressed to the point of wrapping around his carotid arteries, completely blocking off his esophagus. Family conflict also became known, with his main support insisting that he is a “fighter” who would never give up, versus the rest of the family who felt that the patient was suffering and yet that he was deferring somewhat unwillingly to his main support person in order to minimize family drama. Since the medical teams had never before been aware of these intra-familial dynamics, they realized that they may have been unintentionally favoring one family member’s voice over the patient’s own wishes by assuming that appropriate surrogacy existed.
The patient was admitted and rehydrated, and within 48 hours of admission, he was shipped off to the operating room, put under general anesthesia, and a tube directly placed in his stomach (a much more aggressive procedure than the previously recommended and declined percutaneous approach). Twenty-four hours later, a full palliative care meeting was held with several family members present, and the patient ultimately opted for hospice.
This case is not unusual, but in many ways it is emblematic in demonstrating our medical system dysfunctions in how health is prioritized. What about our medical infrastructure leads to a dying cancer patient heading first to the operating room for a life-sustaining procedure before initiating the in-depth conversation addressing the immediacy of his dying process and exploring all options beforehand? Is this an error or an adverse outcome? Is it even a failure, an abuse of medical spending? Or is it in fact an expensive fringe benefit of living in a relatively wealthy nation and protecting a patient’s right to choose? It is certainly not the fault of the attending provider, the resident physician, nor the surgeon. Neither is it the fault of the outpatient specialist providers. In fact, “fault” is a conversation-ceasing word that is becoming more obsolete in healthcare where “systems” preclude blame from being attributed to a single person (the reality of the “Swiss cheese model of mistakes”).
Let’s review this story along ethical principles. As physicians, we are taught about the four moral principles that lie at the foundation of healthcare ethics: autonomy, beneficence, non-maleficence, and justice. Some would argue that autonomy trumps the other three values: i.e. it is up to the medical providers to offer a menu of options (I just learned about “the coke machine method” of delivering care) and up to the patients to choose whatever works best for them (“Do you want everything? Yes, okay, you get everything”).
However, beneficence and a respect for autonomy demands much more. In order to truly provide autonomy and an informed consent with integrity, the patient and his family must be, well, informed. If he had the conversation that his dying may be imminent (a carotid-encircling inoperable tumor does not bode well for a lengthy life-expectancy), and he is verified to have decisional capacity (i.e. no magical thinking that his cancer is curable), he is then perfectly within ethical bounds to choose surgical feeding tube placement followed by hospice referral (his reasons could be that he is willing to die from the cancer, but not from starvation or dehydration). Perhaps this particular patient had this sort of in-depth conversation prior to surgery, but I suspect that in the great majority of cases, there is not enough time for over-burdened medical teams to sift through the lengthy patient narratives to sort out what options best fit the patients’ wishes. With all humility, the time for such a difficult conversation is a really tough thing to accomplish, especially if the health system chooses not to explicitly prioritize it.
As national conversations start to pick up on quality of care, reduction of wasteful spending, and patient-centered medical homes, I hope that all of us in healthcare can remember that in order to offer options in a patient-centered fashion, we need to allocate adequate time and effort to achieve the shared decision-making model that melds beneficience and autonomy to create a real and substantive informed consent. It’s the only way we can work towards the goal of providing our patients with the appropriate tools to figure out “the right thing to do”.