A Milam Thanksgiving

Every fourth Thursday in November, the Swendimans sit around the dining room table and pray. We all hold hands; the meal is blessed. But, before we can partake in a delicious meal whipped up by Aunt Kathy, each of us must say one thing for which we are thankful. Now, as a child, I always wanted to be one of the first ones to be called upon. When you’re seven, what else is there to be thankful for, other than "family," "friends," and "Jesus?" So, if I wasn't one of the first three kids to state my thanks, I would have to get creative (I think one year I said my elementary school teacher, and I had to suffer 365 days of jeers before redeeming myself). No one wants to be put on the spot, especially when the rest of the family is drooling over the homemade cranberry sauce. One pause, one stutter, and the whole family would jump all over you. So every year I took the easy way out… "Friends!" That’s what I’m thankful for! "Friends" was my go-to.

This Thanksgiving was the first ever in which I didn’t go home for break. Living in Asheville, I just wasn’t willing to make the 12 hour drive back on Sunday, around I-495 and down 95 through Virginia. I can think of other ways of raising my blood pressure. I would have been only able to spend 2 days with the fam, and I just didn’t have enough books on tape for a round trip. So, as a vagabond in North Carolina, I was picked up by my second mother, Millie "Misdemeanor" Milam, and I spent Thanksgiving at the Milam Manor with Ronald and the Fam.

It was sad being away from home, but I couldn't have spent the day with better company. The food was absolutely delicious, and all the neighbors and extended family gathered for the festivities. As we chowed down on turkey and hominy (my favorite!), I realized that until then I hadn't truly appreciated how much I was thankful for my friends. All those years of screaming out "FRIENDS!" before Thanksgiving dinner, simply to get it over with and start the meal, was foreshadowing the years later in life when I wouldn't be able to spend the holidays at home. Sometimes we forget how lucky we are to have people we can trust and rely on, people who will take us into their homes on a family holiday and treat us like their own. There are so many people in America who either don't have a place to call home, or don't have close friends willing to take them in. While I wasn't home in DC with my immediate family, in Charlotte, I felt like I was still part of a family.

Friends. For them I am thankful.

So, there was no fighting over the baseball this year (we'll save that for Christmas), and no tipsy Mom after a half a glass of wine, but there was food, family, and Catch-Phrase. Ronnie has told me that I'm not allowed to write Thank You notes to the Milams anymore, but old habits die hard. So here is my Thank You for such a wonderful Thanksgiving dinner. Just a quick post of appreciation for making me a Milam at such a special time of year. I had a great time; I hope I can return the favor sometime in the future. Just know that every Milam is an honorary Swendiman, and Alan and Kathy would be more than happy to switch me for young Ronald, at least for a year or so. Thank you again.

On that note: Happy Thanksgiving everyone!

How We Die

Sometimes when I close my eyes and my mind wanders, I think about death. Not my own, usually, but of the many patients I see in the hospital that are on the edge, living their last few moments in a tiny white room on the eighth floor with no view. Medications, drugs, and fluids are pumped into them as they negotiate the fine line between life and death, slowly inching towards an inevitable fate. When I close my eyes, I can see the 75 year old man who shot himself in the belly, lying with his mouth wide open. A propofol drip keeps him sedated. He won't make it. I see him from my chair in the nurses' station, visible through the clear sliding doors of the Intensive Care Unit. Six floors up is an 85 year old woman fighting off metastatic melanoma. But she really isn't the one fighting; her husband wants absolutely everything done, even if it only means a few more days or weeks, and even if it causes pain. Agony is irrelevant; death is avoidable. I see her as I sit at the foot of her bed, as her husband tells me that God gave doctors the power to heal. Anything less than a war against this disease would be going against God. I sit and listen.

These images remind me of my own mortality. The thought of spending my last days in a hospital evokes a visceral reaction. If I make it to the ripe old age of eighty, I will view every additional moment as a blessing. But, I don't want to be anywhere near a hospital at that point (as a patient, of course; I may very well still be practicing). This feeling has grown stronger over the past six months. Every time I see another 95 year old admitted, I ask myself, "Does she really want to be here?" This can't be the last place where you would want to live. A place where we wake you up every couple hours to take your vitals, a place without a breeze, a place that is not a home.

There are millions of good reasons to be in the hospital. I'm just not sure "dying" is one of them. And I'm not the only one in my field who feels this way. I was sent an article from our Ethics professor, Dr. Meacham, called How Doctors Die, which better explains how many doctors feel about the inevitable.

Years ago, Charlie, a highly respected orthopedist and a mentor of mine, found a lump in his stomach. He had a surgeon explore the area, and the diagnosis was pancreatic cancer. This surgeon was one of the best in the country. He had even invented a new procedure for this exact cancer that could triple a patient’s five-year-survival odds—from 5 percent to 15 percent—albeit with a poor quality of life. Charlie was uninterested. He went home the next day, closed his practice, and never set foot in a hospital again. He focused on spending time with family and feeling as good as possible. Several months later, he died at home. He got no chemotherapy, radiation, or surgical treatment. Medicare didn’t spend much on him.

It’s not a frequent topic of discussion, but doctors die, too. And they don’t die like the rest of us. What’s unusual about them is not how much treatment they get compared to most Americans, but how little. For all the time they spend fending off the deaths of others, they tend to be fairly serene when faced with death themselves. They know exactly what is going to happen, they know the choices, and they generally have access to any sort of medical care they could want. But they go gently.

Part of taking a full History and Physical is asking about the "social history." This is where we document such things as tobacco and alcohol use, family support, and prior occupation. I haven't been at this long, but I have yet to meet an older patient in the hospital who has been a physician. I haven't met enough patients to have a large sample, but perhaps this fact is not surprising. The place where many of us will work for thirty-some years is the last place we want to spend our "free time." It will be something to keep track of though; I look forward to hearing the thoughts of a physician spending his last days in the hospital, or of anyone who has worked much of their life in the place with no breeze that is not a home.

Over the next several weeks I will be preparing to drive back to Washington, DC for the Christmas holidays. I have sent the above article to my immediate family, because I want to talk about last wishes over break. I want my wishes known, and I want to know exactly what my family members want, especially while all of us are healthy and thinking clearly. I will review my living will and make sure that nothing has changed over the past few years. I think this is when the best decisions are made: before, not during, the weight of the moment.

As I watch the propofol and chemotherapy drip, I ask myself if this is how I would want my family members to live their last days. That choice is up to them, but I will choose to watch the sunset without IV drips or blood pressure cuffs. I want to feel the cool breeze through my own window.

The Death Rate in America: One per Person

You're not supposed to have favorite patients. Every patient deserves to be treated with the same professionalism, respect, and care. I do think it's human nature, though, to enjoy spending time with certain individuals. Or maybe I'm simply justifying the fact that I have favorites. All I know is that there are patients that make me particularly happy when I walk into the exam room. These are typically patients (and often their spouses) with whom I've developed a strong relationship. They're pleasant and caring, willing to work with students, and often have a good sense of humor. Some of them have been very sick, others are just returning for another routine checkup. I hope that having favorites doesn't make me a bad doctor.

About a month ago, one of my favorite patients was diagnosed with amyotrophic lateral sclerosis (ALS), commonly known as Lou Gehrig's disease (NB: a significant amount of patient information has been changed for privacy reasons, but how this story has affected me remains true). ALS is a disease of one's nerve cells, specifically the ones that are in charge of "voluntary muscle movement." Very slowly, the patient begins to lose muscle control and coordination. It affects one's ability to walk, stand, and sit upright, speak, swallow, and eventually breathe. Death usually occurs within about 3-5 years. During all this, cognition is generally unimpaired. Your body dies slowly, but your mind knows exactly what is going on.

I can't even begin to understand what must have been going through my patient's mind when he received this devastating diagnosis. From the perspective of a budding clinician, I can say that while standing in that room, I have never felt so helpless. In medicine, we should be able to do something. At least something. Your appendix is acting up; we can take it out. You're in pain; we can take the edge off. You can't sleep; here's a pill. Isn't that what we do? Cure? What happens when there's no cure?

This diagnosis, with all its difficult life and death issues, happened during one of my Neurology clinics on Thursday afternoons. Neurology is one of the highlights of my week. Not only is it a great clinic, but it's a specialty where the physical exam is paramount. The steps and tests are methodical. Diagnoses can be made with your fingertips. Simply by watching how a patient's eyes track the movement of your finger, lesions of the ocular muscles and deep brain can be brought out in physical form. With a simple tap of the patient's knee cap, one can tell if disease is present in the brain and spinal cord or somewhere peripheral. Just by inspecting a patient's muscles for atrophy or hypertrophy, the clinician can learn so much about the patient's condition. The Neuro exam is a true art; the master clinician diagnoses with laying of the hands. And yet with all this information, moments later I find myself standing there, feeling helpless. You have ALS, and we can't cure you.

Maybe that's why I'm drawn to the operating room. "When in doubt, take it out." When a hug and reassurance is all I can give, internally I can't stand it. Of course I should point out that with many of these degenerative diseases, clinicians can ameliorate some of the disease's side effects and perhaps slow the progression of the disease. There is potential for quality of life improvement. But this patient will continue to deteriorate, and that's what makes it so hard for me. Dr. Nortin Halder, a UNC physician who has written extensively in the medical literature and lay press, has given me my favorite medical quote to date: "The death rate in America is one per person." Everyone dies.

That's true, but it doesn't make it any easier.

I had to write about this experience because it is a lifelong dilemma for physicians. Understanding that one can't "fix" everything is difficult for some doctors to grasp. I've heard plenty of stories about physicians who were willing to go to extraordinary lengths to prevent death. If this is our goal as physicians, we will always fail. I guess I am beginning to understand where this mentality comes from. Here I was presented with a patient, one of my favorite patients, who is sick. I want to make my patient all better, but I can't. There's no Band-Aid, there's no pill, there's no procedure. The death rate in America is one per person.

However, there are some things we can do. Knowing the available resources is a good start. These illnesses can be an enormous financial burden (not to mention the emotional toll these conditions take on patients and their families). ALS and some other neurodegenerative diseases are listed by the Social Security Administration as Compassionate Allowances. These 113 medical conditions allow patients to be fast-tracked to disability status because these diagnoses are "so serious that their conditions obviously meet disability standards." There are also support groups, and there are medicines to take the edge off of symptoms (including the psychological sequelae, such as depression, which are extremely common). And then there's compassion.

I don't know how to end this post. I don't have a resolution or a solution. This is a patient that I think about frequently. He is a person who makes me think critically about both life and death.

His and my own.

What's a few days?

On the last day of my week on inpatient Pediatrics, I had the opportunity to spend the afternoon in the Neonatal Intensive Care Unit (NICU). It's the place for very sick babies. Many of them will get better soon; others are there for the long haul. I met an infant who was just there to monitor her breathing for a couple hours after delivery, but I also watched a very impaired premature infant get a chest tube for a collapsed lung and an IV put into her belly button for resuscitation. This is the spectrum. However, what moved me that afternoon was a conversation I got to sit in on with a pregnant mother and the NICU physician. She was a very high risk pregnancy, right at 23 weeks gestation. She had what's called a "placental abruption." In short, this means that the placenta (the baby's connection to mom in the womb) becomes detached from the wall of the uterus. This can cause vaginal bleeding for mom, but it also puts the mother at risk for delivering her baby prematurely. Many of these mothers will have to stay in the hospital until their baby is born. That can be minutes, hours, weeks, or months. In other words, it's a very serious condition, especially at 23 weeks.

The conversation centered around what to do if this baby were born today, tomorrow, next week, or the week thereafter. This is a very important conversation because the older the fetus is, the more likely it will survive. In general, babies born at 22 weeks or earlier have almost no chance of survival, whereas babies born at 25 weeks or later have survival percentages up to 80%, depending on the study (1). So it was important to talk to this mom and find out what she wanted to do if this baby were born right now. What if the baby is born next week? Or the week after? One thing to keep in mind: even if the baby at 25 weeks survives, a majority of these children are likely to be neurologically impaired for the rest of their lives.

It's a difficult dilemma, and I cannot imagine the burden of this decision on the mother. At 22 weeks and prior, it is almost universally the standard of care not to resuscitate the baby if it is born and starts to deteriorate. On the other hand, at 25 weeks and beyond, doing everything possible is the norm (and the NICU doc told me that at Mission in Ashville, this would be the standard of care). But during the 2 weeks in between, the burden mostly falls on the mother. It's these crucial two weeks where there's an ethical gray area. How do you prepare for that?

To give you an idea of how likely a baby is to survive, with or without neurological impairment, you can use this link: NICHD Outcomes Estimator. This has been developed by a subdivision of the National Institutes of Health to calculate percentages based on gestational age, estimated weight, gender, singleton birth, and whether or not they've had the opportunity to receive beneficial steroids. There's a reason that we want babies to get to term, a full 9 months. You can see it with these calculations.

These guidelines are based on our best scientific evidence. But one night you go to sleep at 24 weeks and 6 days gestation, and the next morning the baby is 25 weeks. Now much has changed according to the guidelines, and the decision-making could shift. Has it though? What's a few days? It seems so arbitrary. The infant has a right to life, and a right to mercy. The parents have a right to information, and a right to make decisions on behalf of their child. Life vs. Death. And the possibility of a life of permanent impairment and pain. Is this a life? Sitting in the middle is you, the clinician, trying to provide adequate information, allow autonomy, and keep in mind the best interests of the mother and the infant.

Two weeks. I can't imagine making decisions in those two weeks.

I don't have any answers; I am still trying to figure this out on my own. But I think it is an interesting case-study in ethics. What would you do as a parent? What if suddenly you had to make these decisions? Do you do everything, or do nothing? Or something in the middle. As a guide, here are UpToDate's current recommendations (1):

• Below 22 weeks gestation – Resuscitation is not offered or provided due to the zero or near zero chance of survival.
• 22 0/7 to 22 6/7 weeks of gestation – Resuscitation is offered to parents if there is at least a small chance of survival based on available information (e.g. the NICHD outcome estimator for patients receiving mechanical ventilation) and is then provided only if requested by informed parents.
• 23 0/7 to 23 6/7 weeks of gestation – Resuscitation is offered to parents but provided or withheld based on the preference of informed parents.
• 24 0/7 to 24 6/7 weeks of gestation – Resuscitation is offered to parents and may be provided or withheld based on the preference of informed parents. However, if the newborn is predicted to have greater than 50 percent chance of survival without neurodevelopmental impairment, resuscitation is provided. That likelihood is determined using the NICHD database outcome predictor for patients given mechanical ventilation, and using best obstetrical estimate of gestational age and estimated fetal weight.
• 25 weeks of gestation and higher – Resuscitation is provided.

Thoughts?

1. Ehrenkranz RE, Mercurio MR. Limit of viability. In: UpToDate, Basow, DS (Ed), UpToDate, Waltham, MA, 2011.