Paternalism in Medicine
My patient was a Hispanic immigrant that presented with ascites secondary to terminal HCC and cirrhosis from chronic alcohol abuse and hepatitis B. According to the documentation, he was not at capacity and worst, he was never told about his disease as the family had withheld the information for fear of precipitating his inevitable decline into death. When I met him in the ED, he seemed confused although oriented to name, date, and place. However, when we spoke he told me about his life how he did not go to school given his poverty, how he had met a famous Spanish television broadcaster (Don Francisco), and that he was a tailor and actually tailored suits for many Hispanic celebrities in the past. He admitted to drinking alcohol– a couple of beers– and partying in his home country when he would go back to visit his family and friends. His last drink was 6 months ago and he would drink a bottle of vodka with a couple of beers. One day in January in his home country, he felt some stomach pain. The work up for his abdominal pain showed that he had liver findings on ultrasound suggestive of cirrhosis with unknown masses; when he came back to the States in March, a prompt evaluation at a local hospital determined that indeed he did have cirrhosis but also had terminal HCC. The patient was given palliative treatment and with referral for the patient to see palliative care, but the family refused to take him there. They refused to give up as they saw their father as a fighter. Hence, the family shuttled the patient across different hospitals, hoping for a different answer: new medications, transplant option, or a curable disease. But at every point, they have met the same fate. The patient was oblivious to all this.
The patient’s health status was tenuous, as he was becoming hypotensive and toxic appearing a couple of hours afterward. In the meanwhile, I decided to ask the healthcare proxy what was the patient’s code status. I began talking softly to the sister and the patient’s children what they wanted us to do if the patient’s heart ceased to beat and the patient ceased to breath. The sister– the patient’s proxy– began crying. I counseled her trying to explain the difficult situation her brother is in and the high likelihood that something dire could happen, but that this decision would not change his treatment. However, I did frame it that it was very unlikely that the patient will have a good outcome as he will likely be brain-dead and attached to a ventilator if anything were to happen and full code. That is perhaps the grand irony of our ICUs today: most of the time the medical providers and family end up deciding when a patient expires. Quality of life falls through crevices of our medical establishments as life– the scientific definition of the sum of a brain sending oscillations, a heart beating, or a lung expanding are the parameters used for the definition of living. Hence, I spoke with the family and they said they cannot come up with a decision and they wanted him full code in the meantime.
I reiterated how in the end, this will not change how we manage his care. We will do everything medically indicated, I reassured them. They told me that they needed time, and then, they asked me for an opinion. I could have said that it is a decision that they should come up on their own, that they should consider it carefully, and that I cannot make that decision for them– I am biased. But I decided to guide them through my reasoning step-by-step weighing the definition of life humanistically and the quality of life issues like his comfort against their wish to see him with life at all cost. In retrospect it was a paternalistic decision to bias them toward one side over the other, but they asked me for a real answer not to side step the issue to pay homage to professionalism and patient autonomy. They were asking for help. And unfortunately, our medical system has given them such a complex situation and so little tools to help them reason it out on their own that I might have been doing more harm letting them come to a decision on their own with all the anguish and desperation people face in those decisions. I ask many times after leaving the hospital: how can we expect our patients to cope with the complexities of medical care and the system along with the pain and fear that become acute during an episode of severe illness.
As I was walking back to meet the team, I was imagining how impersonal the situation would have been if an interpreter were to be explaining everything—missing the nuances and the medical knowledge that informs the things we say in these difficult situations. I spoke to the team about this, they were glad I brought the topic up and said they need to talk to the family about that. Fortunately, our patient improved, although it was only short-lived. That next day we had the difficult conversation again. In tears, the family told us that they agreed with the DNR/DNI. We reassured them that this would not affect the patient’s care. Then the family requested that comfort should supersede treatment and to withhold medical care that is unnecessary. They did not want to make him suffer anymore. We took this into account, and hence, palliative measures were instituted for this patient. Later that day, the team and I discussed the patient’s obliviousness to his disease, and we decided that we needed to tell him the gravity of the situation although we need not mention the diagnosis itself. We also needed to find out whether he is at capacity, and whether he truly needed a health proxy.
That inevitably led to the conclusion that we might need to ask him for his code status. Our patient gave the impression of being cognitively intact, but he lacked the capacity to understand what DRN/DNI meant in context of his illness given that he just found out about it now. He had the impression initially that he was going to get out of the hospital and go to DR. It was at this point that I became uneasy as a clear conundrum came to my mind: was the patient at a cognitive incapacity due to hepatic encephalopathy from the cirrhosis/HCC or was it that he lacked the formal education to actually reason through the complex options given to him? Moreover, who are we to break the family’s code of keeping the illness and its ultimate consequence from the patient? What are we going to do if the patient contradicts the family’s wishes? In the end, he did want to be full code, but he didn’t understand what that meant. So although he assented, because he cannot understand the consequences of his options it was determined that he was not at capacity to make such a decision. Therefore, the health proxy’s decision was upheld and the DNR/DNI status kept. We told the family what had happened, and when they saw the patient, he had begun de-compensating as his kidney began failing after a large volume paracentesis done for comfort. A day later, on a sunny Friday, the patient passed away.
This case made me think about what we did and what could have been done differently. In retrospect, I would not have asked the patient what was his code status after we had consulted the family, and they had a prolonged difficult time to come to a decision. It added another element of complexity to the patient’s care as it can possible create regret of the family’s wishes contradicting the patient’s wishes. It might even create animosity for the medical team and the family members. Fortunately, this was not the case in our situation. However, I would assess for cognitive function to see if the patient truly needed the appointed health proxy as determined by an outside hospital. The difficult thing was differentiating between educational level and cognitive incapacity from the disease given the complex choice we gave our patients. In sum, this was a very difficult situation that made me reflect that in the end, paternalism is an element in medicine that we abhor in our world where patient autonomy means everything, but that in certain circumstances, it is warranted.
liroforia 