An Essential Connection

When I first met José, he was already intubated in the ICU, breathing only with the help of a ventilator. Suffering severe pneumonia, he had been found unconscious in his apartment by the landlord. José wore a crucifix around his neck, and had a business card for the local LGBT center and a bottle of HIV medications in his pocket. There were no documents to confirm his identity.

For weeks, my medical team and I meticulously watched over José’s physical health. Twice, his lungs collapsed and we put in several catheters to re-inflate them. Five times he went into respiratory failure despite being on maximal mechanical support. We spent hours manually pushing air through his breathing tube to keep him alive. A multitude of continuous IV medications and blood products maintained a semblance of vital signs. Drains in his bottom kept him clean and dry. We could not feed him because he had persistent bloodstream infections. Every week, the quality assurance team came by to ask: What are your care goals?

This is usually a question my medical team and I would discuss with the patient or a patient’s family. But José could not be woken up and no one ever came to see him. Fingerprinting turned up no leads. No missing person’s report had been filed fitting his description. We called the doctor who wrote José’s prescriptions. He gave us the number for an emergency contact; however, that man said he had not seen or heard from José for months and knew no personal information about him.

José’s profound disconnectedness troubled me. Every day, his nurse and I evaluated all his tubes, medications, and machine settings with extra care, trying to compensate for his loneliness. I would squeeze his hand for a moment before I left, though I wondered if he was still with us in this world. The immensity of his solitude weighed on me. He could pass away without anyone who had ever mattered to him having a clue.

How did José become so cut off? Was it because he was gay or HIV positive or both or something else altogether? Working in a safety net hospital, I have cared for many people like José, who are hanging by mere threads in the margins of society. What kills them, and often in heartbreaking ways, is not their medical illness. It’s their social isolation. Stigma is the cultural stress that ultimately extinguishes their lives.

When academics talk about “vulnerable” populations, they are usually referring to people who have no money, no power, or need public assistance to thrive. Health care disparities are defined along demographic factors like ethnicity, income, employment, education, and marital status. Ultimately though, what makes certain groups more vulnerable than others is not the category they identify, or are identified, with; it’s how connected they are to other human beings. Poor people can belong to strong communities that will take care of them in times of need, and thus be resilient. The same goes for people who are unemployed, disabled or uneducated. People only end up on the street when they don’t have anyone at all.

It is in this light that I have come to appreciate marriage equality as an important and relevant policy issue for our society. Beyond civil rights and basic human dignity, marriage creates a connectedness that is protective against life’s unknowns. When crisis strikes, it is a buffer that prevents people from ending up like José, who essentially became a ward of the state. What cause does the public have to deny equal benefits to consenting adults who want to make a lifelong commitment to each other? Why do we still quibble over gender when so much collective good is at stake?

The same month I took care of José, I met Oscar and his “cousin” Eddie. Like José, Oscar also came to the hospital with severe pneumonia, but Eddie was with him, and brought him in in less critical condition. I was able to counsel both of them about intubation when breathing became too difficult. Oscar designated Eddie as his health care proxy. As long as Eddie was there, Oscar did not require much sedation and pain medication. We could see how quickly his heart rate and blood pressure improved with Eddie by his side. One quiet night, I finally asked Eddie why he introduced himself as Oscar’s “cousin,” when it was obvious that he was his partner. Eyes to the ground, Eddie muttered that he was afraid we’d kick him out if we didn’t think he was “family.” I started to apologize if we had made him feel uncomfortable in any way, but he interrupted and said, “It’s not you. It’s Prop 8 that’s been hard on us,” as he laid his head on Oscar’s chest. “When will you be able to take this tube out, Doctor?”

As a whole, we have enough intractable conflicts to contend with, without wasting valuable time and resources to set up more stumbling blocks for ourselves. The ultimate goal of government is to provide an infrastructure for diverse peoples to live peacefully, happily, and freely together. Marriage equality on this level isn’t about interpretations of religious text, historical precedent or legal technicalities. Moreover, it is not about whether or not the private sex lives of two people make us feel “icky” or not. As far as our elected officials are concerned, marriage is a simple civil construct to bolster beneficial human connections that spill over into all aspects of our lives - at work, in schools, in hospitals, in neighborhoods and beyond. Pride can overcome individual shame, but it takes all of us together to remove stigma. It’s time to end the unnecessary suffering.

Achieving Physician Autonomy

The American Medical Association and the American Association of Medical Colleges reported recently that increasing numbers of medical students are seeking dual degrees. The most popular combination was the MD/PhD for physician-scientists, followed by MD/MPH for physicians with public health interests, MD/MBA for physician-entrepreneurs, and lastly MD/JD for physician-lawyers. Despite the extra time and money, MD candidates believed that additional training would lead to a more sustainable, and perhaps, more productive career.

Interestingly, my dual degree, the MD/MPP was not discussed in this article. MPP stands for Master’s in public policy, a hybrid between an MPH and an MBA with a dash of public administration. My fellow MPP classmates included healthcare providers, state officials, presidents of foreign countries, military leaders, and directors of nonprofit organizations. I was drawn to the program because it allowed me to learn from my classmates, as well as experts who taught in the law, education, public health, and business schools of the university. When a number of my teachers and classmates left abruptly to return to government service after the 9/11 tragedy, I felt even more thankful for the richness of knowledge and influence that was expanding my view of the world.

Many people over the years have asked me why I chose to take this detour. Being a nontraditional candidate doesn’t win you many points in what remains a conservative application process for medical school. I was frequently asked during residency and fellowship interviews why an aspiring doctor would waste time dabbling in public policy. I told the truth: I wanted to learn how to protect my patients from the system. I never wanted to feel helpless in the face of laws, regulations, and bureaucratic red tape. My interviewers liked how I emphasized the primacy of physician autonomy.

Sit down with any group of doctors and you will hear that we want people to stop getting in our way of taking care of patients. Just last week, Dr. James Breeden, the president of the American College of Obstetricians and Gynecologists, wrote an impassioned letter to the editor of the New York Times, demanding that politicians “get out of our exam rooms.” The letter struck a deep chord within the physician community. Throughout 7+ years of education, we were preparing to combat disease and to hold the doctor-patient relationship as sacred. Then, we graduate into the world of clinical practice, and realize that the U.S. health care infrastructure was not created to support our mission. Doctors lose hours on the phone trying to convince insurance agents to approve indicated treatments. Scheduled surgeries are cancelled last minute due to nurse under-staffing. Uninsurable patients with pre-existing conditions go to emergency rooms for routine care. Hospital financial managers tell families that their unconscious loved ones in the intensive care unit have to go elsewhere because they have the wrong insurance.

In pursuing a dual degree, my colleagues and I wanted to guarantee our independence in an often-dysfunctional system. Autonomy should naturally develop from greater self-sufficiency and competence, and we would have more letters after our name to confirm it. Yet, 12 years into my pursuit for autonomy, I find myself going back to a lesson learned early on during my public policy years -- team players get better results than lone wolves. When faced with serious problems, professional collaboration usually trumps single expert opinions in getting things done.

I especially remember the Spring Exercise in graduate school, a class-wide activity in which 130 of us were expected to organize and produce a detailed solution to the issue of HIV/AIDS in Africa, using real-time data. We had one week to prepare the report and presentation for faculty members. I still recall the stunned pause in the auditorium when my classmates and I wondered how we could possibly complete this massive assignment, not knowing each other’s names, much less worked together. Then, we rose to the occasion. We formulated objectives and assigned them to committees based on our majors and interests. We made contact lists and set up a strict schedule of meetings. We had daily check-in times when every committee shared their progress with the entire class. We debated, negotiated, walked away from the table, came back to the table, and ultimately drew up an extensive policy brief with graphs and figures, a budget, and a political strategy for execution. Who knew a ragtag collection of people from all over the world with various backgrounds could pull together and accomplish a common goal in 7 days? During our final presentation, we found out that our work would be given to the Secretary of State for review. It was exciting to hear echoes of our efforts in subsequent government briefings.

I didn’t appreciate the true power of the Spring Exercise until years later, after I have stayed up nights wondering why our health care system is so inadequate. It was a success that continues to remind me of what’s possible. Medical training encourages lone wolf behavior, but health care reform needs team players. Doctors want to be left alone to do our work, but sustainable autonomy won’t happen until we let go of our siege mentality and look for solutions outside our comfort zone. I had originally set out to equip myself for independence, but instead, I’ve learned that our problems are too big and too complicated to tackle alone. I hope that what our country is experiencing now is that pause in the auditorium before the action gets underway.