Doctor walking through hospital corridor (Getty Images)

In health care access, doctor privilege is real. This is how it works

COVID-19 has made me ask myself if I would "make the call" to get a loved one treatment. I've considered it before



David Weill
April 11, 2020 11:29PM (UTC)

This story has been updated since publication.

It starts, say, with a cough and fever, then body aches, and a few days later, respiratory failure. Your wife, infected with COVID-19, is dying. You're an ICU doctor and not just any ICU doctor: you direct the ICU at the largest hospital in your town.

You know what to do: get her to the hospital now.

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From a quick look at the census that morning, you know there are no beds available and a long waiting list to get into the ICU. To make matters worse, all available mechanical ventilators are in use.

The pandemic is in full stride.

In addition to your official role, you are personally connected: the CEO of your hospital is a medical school classmate and you're golf buddies with three of the hospital board members.

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So you ask yourself: Do I make the call?

For a moment, you think, Maybe we should wait our turn, like everyone else. Wouldn't that be the right — ethical — thing to do?

But it's my wife, the mother of my two kids, my best friend.

What would you do?

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I haven't had to answer this question myself, at least not yet, with regard to the coronavirus outbreak. But it's the very question I had to deal with in response to a health crisis that confronted my family years ago. This was well before we had to face the downside of our interconnected world and grapple with this virus that has shown up near you with no return address, not to China, Europe, or anywhere.

* * *

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It was 20 years ago at the University of Alabama-Birmingham where I was impatiently waiting in a hospital room for my father's liver to arrive.

In my role as head of the lung transplant program, I had already accepted a donor lung for my patient from the same donor that would provide my father with his new liver. I fidgeted, checked my phone, got up and walked around the hospital corridors, and eventually sat down at one of the nurses' stations—anything to avoid directly addressing what was about to happen.

Talking to my father soon after he learned of his cirrhosis diagnosis, I brought up the possibility of his receiving a liver transplant. He had been infected with hepatitis C from a blood transfusion after a hip replacement and now he was dying. As a transplant doctor, I knew I could help him and make the Big Save, the kind of Save people like me live for.

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His response was lackluster: "No, I don't think so. If it's my time, then so be it." I was taken aback. My father was forceful and determined with most things in life, making our relationship challenging at times, so his apparent nihilism about his own health was bewildering to me and contrary to his normal grit and self-assuredness.

I tried to understand. He had been driven out of his country by the Nazis when he was a little boy and as a result, I figured, he would look at any life he had afterward as gravy or lagniappe, as we say in Louisiana.

As the months after his diagnosis passed, his health deteriorated. He lost a lot of weight and most days was too weak to get out of bed. When I visited him in Colorado in 2000, the orange glow of his jaundiced skin—a classic sign of end-stage liver failure—was striking. Transplant was his last hope, and I made a strong case for him to get one.

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When my father began to warm to the idea of getting a new liver, he'd told me that he would never let me donate part of mine to him. He was referring to a split liver transplant, in which a living donor gives a piece of his liver to the recipient, a procedure used if a donor could not be found in time.

"Don't worry, I'm not offering," I'd joked, using humor to deflect the seriousness of the subject. "With my red wine habit, I'm going to need all the liver I've got." 

"Good," he'd replied, then paused. "Maybe you could just help get me the transplant the normal way," which I took to mean a donor liver procured from a brain-dead organ donor, the usual way people get one. He knew I would try to help—like most sons, I wanted to be there for my father, deliver the goods if I could, even if this ask was a bit different than most.

Dr. Steve Bynon, a cycling buddy of mine who at the time ran the liver transplant program in Birmingham, was not someone I would just call up and say, can I ask you to put a new liver in my father? I'll return the favor if you or someone in your family needs a new lung.

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Influence is of course rarely like that — whether when a university board member writes a letter of recommendation for your child who is applying to college or when someone you know helps you get a job — and definitely not like that in healthcare. Instead, it's subtle, even unconscious.

In the figurative room where in my imagination my father, Steve and I sat, influence was neither transparent nor transactional — it hung in the air around us. We might nod to each other, but we wouldn't wink.

Here I was, in a circumstance where I could exert unsaid influence, seek special advantage, just like others have done over the years in even less dire circumstances, essentially adopting a jungle mentality that is certainly non-egalitarian but an ever present part of our shared human experience. I sat, on a well-positioned perch, with the ability to grease the skids, to put my thumb on the scale — pick whatever cliché you like. Today it would be simply described as "privilege," not of the financial or status kind, but of the access kind, perhaps the most valuable of all privileges.

* * *

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A few weeks later, I arranged a visit for my father with the transplant team. Dr. Bynon met with him, went through his evaluation, and put him on the waiting list.

When I heard the news, I felt a wide range of emotions: relief, gratitude, and perhaps even some guilt. Transplant is a zero-sum game. When one person gets an organ, that usually means another person won't, at least at that moment, and who could know if the patient not getting a transplant would survive while waiting for the next organ to come up. Was my father less deserving than younger people with their entire lives ahead of them? Would he be the reason a mother or father with small children didn't receive a life-saving transplant?

But more to the point: was this fair? Maybe yes, maybe not; I'll never know for sure. Had I used my access to get my father on the waiting list, committing the transplant equivalent of insider trading?

At the time of my father's transplant, almost all of them were performed in people younger than 60. Programs occasionally took older patients but never someone as old as my father, who was 68. In addition to the problems which were a direct result of his advanced liver disease and his age, his mobility was limited after having multiple orthopedic operations. To transplant physicians, these factors might make him seem like a questionable candidate for a lengthy operation, even if he needed it to save his life.

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Which made me think about a broader question.

When we deliver healthcare, especially the complex kind, is it ever, or even usually, fair?

It was the subjective nature of the transplant "selection" that made me uneasy. In all the transplant programs in which I've worked, there is a weekly Selection Meeting (yes, it's actually called that). We sit around a conference table deciding, in essence, who lives and who dies. As a society, we are not unfamiliar with subjectivity — it's all around us, a part of our daily experience. And sadly, in health care, various disparities are even more prominent, revealed in many different settings, apparent in many different analyses. But in the transplant arena, I have never been comfortable with it, even as my job necessitates my making these choices regularly. It gnawed at me then and still does now.

Even worse, I have become concerned that there was something more subtle going on, something not as obvious as the usual healthcare disparity factors — the color of your skin, how much money you have, or the quality of your health insurance.

It's who you are and how you present yourself.

My father, for example, was a well-spoken academician with the publications, titles, honors and professorships that go along with a prolific career. A man with many admirable traits, he was being "sized up" for a possible transplant by people with a similar life experience — academic overachievers, those who sought and received awards, those with scholarly publications.

Would it be any surprise if the doctors looked at him as "one of them"?

No. It would be nearly impossible not to.

When I evaluate whether to list a patient for transplant, I find myself doing the same thing after spending an hour with an appealing patient, perhaps one gifted with a winning personality or, I am reluctant to admit, a "success" in life measured by all the usual ways that we measure success in our society. Sometimes, when it comes to replacing an organ, it can come down to how you present yourself, to whether the transplant team "likes" you.

In effect, the social skills you learned in high school could now save your life.

But most important to me, more important than what the transplant team might have been thinking, was the simple fact that he was my father and I was not ready to see him die. I wanted him on that list.

And when influence like this is exerted, whether conscious or not, who is left behind, whether one is talking about access to a transplant or treatment for COVID-19: the underinsured who often have a lower socioeconomic status, the less well connected, and yes, it should be said, those with darker skin color — a marker of poor access that remains a stubborn feature of our healthcare system.

Partly because of my position, my father was able to present himself to the people with the power to save his life before it was too late. And also because of his professional background as an accomplished physician-scientist, those people perceived him as a worthy person in need of a liver to survive rather than a data point with the potential to negatively skew the program's survival statistics because of his relatively advanced age.

Were we engaged, my father and I, in influence-peddling — not to profit financially, which would be the usual incentive, but instead to gain advantage in order to serve a higher goal: survival? 

Just a few months after my father was listed for transplant, the call came.

"There's a liver that I think would work for him. Motorcycle accident. Young guy," Dr. Bynon said. My heart raced with anticipation but then slowed back to normal, as it always does when I consider the tragedy that provides donor organs to transplant recipients. This man, I could imagine, woke up that morning, kissed his family goodbye, hopped on his motorcycle, and met his fate as an organ donor. That wasn't his plan that day, his bad fortune turning into my father's good one.

I called my dad. At first, I hesitated, then launched right in. "Look, I think they have a liver for you." Not something you say to your father every day.

My father, mother, and I went to the hospital. After an hour, an aide finally came to wheel him to surgery. Due to his failing condition, even sliding over from the bed to the gurney was difficult. He tried to do it himself before ultimately accepting help from the transport guy and me, grimacing the entire time. Once on the gurney, he straightened his hospital gown and breathed a sigh.

"OK, all set?" the transporter asked.

"I guess," my father replied unenthusiastically. He didn't appear frightened, mainly just inconvenienced, which to this day makes me smile — my father's patience, whether waiting for a waiter to bring his meal, a bartender to serve his scotch, or a surgeon to replace his liver, was not his strong suit.

When we got to the pre-op area, the transporter said to me, "OK, doc, I've got to take him back now."

And with that, my father was wheeled through the automatic doors into the holding area. I watched the doors close, then stood there for a while, staring.

As I walked back to the hospital room where my mother was waiting, I wondered whether that was the last time I would ever see my father and about all the questions that I had failed to ask him: What's most important to you in life? Your work? Your family?

And I thought about how we had just botched our good-bye.

* * *

Aside from thinking that Colin Powell was in the hospital room next to his (a hallucinatory effect from the pain medication), my father recovered from transplant without a hitch. His five-day stay in the hospital would have been considered short for any patient, but for a 68-year-old, it was astonishing. He was nonplussed by the whole experience — for him, the outcome was going to be what it was going to be.

Yet even if my father's transplant didn't transform him, it changed me.

Growing up, I could never have predicted that I would have been in the position to help a family member in this way, but there I was. I got the opportunity to help save my father's life — with a big assist from his liver transplant team, of course. If it felt wrong to do so, it would have felt so much more wrong to let him die without giving him the second chance he deserved.

* * *

My father lived 12 years after his transplant, most of it in reasonably good health, until the very end when he developed multiple myeloma. He and my mother were able to grow old together. He was around to see his own children, my two older sisters and me, move into middle age, the good and bad of that. He got to meet his three grandchildren.

He died in his sleep without pain, or as far as I know, regret. It was the kind of "good death" that people talk about at funerals.

And his transplant and my role in it? It never came up, despite our near daily conversations over those many years. I didn't directly address, either with myself or anyone else, any part that I might have played, as if saying it out loud would necessarily make it true. I didn't want to open up a transplant version of a Pandora's Box, from which organs flew out to the "right" recipient, exposing the issue to examination, especially mine.

The fact that we never talked about it, perhaps that was a good thing. Maybe it was best that we got those extra 12 years, until he reached the ripe old age of 80, to be father and son, not patient and doctor. Just as it should be.

As I watch the COVID-19 crisis unfold, I am in a comfortable spot — insured, financially stable, plenty of hand sanitizer nearby. And with access to the most advanced hospital in the state less than a few minutes' drive away, a hospital where I work part-time and "know" people.

True, my family is in the same boat as everyone else, but when the boat springs a leak, as it could, we will be the first ones out — not to get a new liver like my father needed, but to get the healthcare required to survive. By good fortune, it's a perk of the position I find myself in—the front of the line. It's an advantage, I should admit, that I would try to exercise should the need arise, just like I may have, however tacitly, when my father needed to be saved.

In our society, influence is often unsaid — it doesn't need to be. Perhaps George Orwell was prescient in "Animal Farm" when he wrote, "All animals are equal, but some animals are more equal than others."

For now, I will do what everyone else is doing: wash my hands, watch the news no matter how horrible, and keep my distance from other people, except those closest to me who, should the need arise, I would help any way that I can. And remember each step of the way that others need help too, now more than ever.

What would you do?


David Weill

Dr. David Weill is principal and founder of the Weill Consulting Group, a biomedical consulting firm. He is the former director of the Center for Advanced Lung Diseases and the Lung and Heart-Lung Transplant Program at Stanford University Medical Center. He recently completed a memoir entitled "Exhale: Healing, Hope, and a Life in Transplant." Learn more about him at davidweillmd.com

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