From Muslim Registries to Radical Health Care Reform—Caring for Patients in an Era of Political Anxiety
Feb 3, 2017 - 3:30:22 PM
On the first day after the election, a female patient, who was facing a complex decision about postmastectomy radiotherapy, said to me and the resident working with me, “You keep asking if I have any questions, so I’ll ask you the only question I really have. I have Medicaid—you know, what you get if you’re poor—and I heard I can get breast reconstruction after radiation is all done. Is insurance still going to cover my breast reconstruction? Even though I’m poor?” I felt the extraordinary weight of the responsibility to model an appropriate response for the resident in this setting. How was I to reassure the patient in this situation when I myself was so unsure? I noted simply that I could not imagine any elected official telling a woman with breast cancer that she could not have surgery that is known to improve quality of life in the way that reconstruction does.
The same day, another female patient considering participating in a clinical trial of omitting radiotherapy after lumpectomy, which was framed as a choice between radiation now and radiation later if needed, said that she was willing to tolerate a higher risk of local recurrence that might subsequently require treatment, but then noted, “I do hope that the government doesn’t change the rules and say they won’t pay for radiation any more if I do need it later. I am going to be relying on Medicare at that point.” In the context of consenting a patient for a clinical trial, I did not feel that I could be reassuring in that regard from an ethical standpoint, so I noted that she should take all considerations into account. I have no idea if that was the right thing to say. I am an expert in my field and can often quote off the top of my head research statistics that provide refined probabilistic predictions of the future, right down to the decimal point (then again, so can pollsters, or at least I thought so). I am unused to having no idea what to say.
Perhaps the most concerning interaction prompted by the election results was with a Muslim patient, who recalled completing an intake form years ago that inquired about her religion. I noted that such a question is common on medical intake forms to allow for the delivery of culturally competent care. She asked if it were possible to remove that information from her electronic medical record. In the context of comments made by our President during his campaign about creating registries of all Muslims in the United States, I understand her concerns. Given that a student at my institution was threatened with being set afire by a stranger for wearing a hijab, I worry how quickly and easily innocent individuals can be persecuted.
Indeed, my own son, who is only 7 years old, thrust his arm at me shortly after the election. I thought he was about to ask me to look at a cut or a scrape. But his purpose was not to demonstrate any injury; instead, as he held his arm before me, he asked with great concern if Donald Trump would be able to tell that his skin was not white. My daughter then asked how the Nazis had figured out which people were Jewish. My heart breaks at these questions from my patients and my family alike. Their concerns may or may not be overwrought. But they are undeniably a consequence of comments, whether intended literally or only metaphorically (or perhaps just provocatively to get votes), from a man who became President of the United States.
As a proud immigrant to this great country, the United States, born to parents who witnessed firsthand the horrors of an oppressive governmental regime, I have always found comfort in the knowledge that the American political system was carefully designed to protect against the sorts of trespasses my parents endured. The United States government is deliberately a system of fragmented powers across 3 branches , as well as between federal and state levels. As any student of The Federalist Paperscan attest, the framers of the US Constitution were well aware that democracies must protect against the potential for the tyranny of the majority. Indeed, the Bill of Rights itself begins by explicitly embracing the limits on popular power, instructing that “Congress shall make no law….” Neither can our executive branch change the law unilaterally, nor may they, even with the approval of the legislature, change the law in a way that infringes our constitutional safeguards of equal protection. Yet talk of radical change to our health care laws is afoot. Given the division of public opinion and the fears I continue to hear from my patients, I worry this talk only inflames the anxiety and uncertainty we now face as a nation.
And what role should physicians play in such drama? As physicians, we bear witness to the deepest fears of patients, fears that some may not be able to disclose in any other context. With this comes a responsibility for us to speak out on behalf of those for whom we care. We are educated and privileged citizens. It is becoming increasingly likely that physicians will be thrust into addressing political issues both in the clinic and beyond, a role many, like myself, may find unexpected. Regardless of our personal political convictions, we are unified by our possession of a unique perspective regarding human dignity that derives from having witnessed bravery in the face of suffering. As physicians, we have been privileged to view repeatedly both the love and devotion of those with deep bonds, as well as the kindness of complete strangers. It is our obligation to ensure that we use our privileged voice to advocate for those less fortunate in our society, whomever they may be, and to speak up for those who may not be able to speak up for themselves.
So I’m speaking up: Mr President, my patients are scared. Whether you genuinely intended to cause anxiety or whether people have taken your words out of context, you have caused a wave of fear I have never seen before in my professional career. It is affecting my patients, who are scared because they have cancer, but now they seem even more scared about something else. And I think that is “very unfair.”