It was stunning news. I listened with disbelief as my colleague described how a patient of ours, in whom we had uncovered a host of serious diseases over a few years, was now newly diagnosed with cancer after an incidental scan. In addition, his social supports had been eroded and I thought about what it would be like for him to die from a vicious terminal disease while alone and homeless. He would not be the first patient for me to watch die in such a way.
“Why do you want to work in healthcare?”
“I want to help people.”
This dialogue is the most common conversation people will have about a career in medicine. The way we think about healthcare professionals tends towards the poignant and provocative: heroic paramedics and EMTs in ambulances, austere physicians and pharmacists and lab researchers in crisp white coats, dutiful and deeply compassionate nurses in a hospital ward, charming and encouraging therapists in the office. By and large, these images are positive ones of trust, care, and goodness.
These perspectives have a special resonance with the current generation because they reflect genuine and people-oriented views in an otherwise superficial and increasingly disconnected society. Today’s aspiring professionals are idealists, but many of them are also suspicious of systems, corporations, and financial interests. The rising workforce is relational and post-modern, seeking out “authentic” experiences and friendships grounded in elements that reflect something valuable, tangible, and indisputably good. It is therefore logical to prize healthcare highly as a career, for what experiences can be more raw, positively-minded, and relationally-oriented than the alleviation of suffering, the curing of illness, and the postponement of death? Continue reading “Helping People Is Not Enough”
The patient came in for a refill of pain medications even though it was his first visit to the family medicine practice. The front desk staff had a letter for the supervising resident from the patient’s previous doctor, which the resident read out loud to me: “Due to difficulties in our doctor-patient relationship, we regret to inform you that we can no longer serve as your primary care physician office.”
The resident’s eyes widened with recognition. “Ah! I’ve heard about him. They said that this doc was a saint for seeing him for so long, something about him being non-compliant and all that.”
It was my job as the medical student to figure out the rest of the story. His name was Mr. Thompson* and he had a dizzying array of pathologies. He was friendly and talkative throughout the interview, but I harbored a deep mistrust for him beneath my own pleasant and cordial exterior. I had been charmed and lied to before.
His chief complaint was not, in fact, a need for pain medications. It was a set of extensive and painful leg ulcers, which remained hidden underneath his pant legs. As he rolled up his clothing to reveal the layers of bandages covering both calves, a nauseating stench filled the small room. My eyes began to water and I wondered if it smelled of gangrene. Then I wondered if it would linger on my clothes.
According to Mr. Thompson, visiting nurses typically changed the dressings once a week, but recently they began telling him his legs smelled particularly bad and that the doctors should take a look. The resident came in and we began preparing for the procedure. Mr. Thompson continued to talk about his legs casually as if he were speaking of the weather. They swelled occasionally and leaked fluid, especially when he didn’t take his meds. The arthritis in his knees and ankles was worst when he sat, but he would stay seated for us. There was a large ulcer on the left side of the right leg to be careful of. He would yell to let me know if it hurt.
The worst part of the process had been removing his socks, which he admitted he couldn’t change often because of his inability to reach down and touch his toes. He usually just threw them away, so we did likewise. I knelt at his feet and, with gloved hands and a large pair of scissors, slowly snipped away at the old dressing. It was stuck to the skin, and as I it peeled away, diseased and dead tissue flaked off with the gauze. What remained was a mottle of purple and red hues, a blotchy landscape of crusted inflammation stretching from the knees to the tip of his scaly toes.
Mr. Thompson eyed the resident working alongside me and said, “You’re scaring me.”
“What?” the resident replied.
“That look on your face… you look scared – surprised.”
“Well, this has got to be one of the worst cases of this I have ever seen.”
“Oh, really? Well, this is actually doing well now. It’s normally worse.”
The thought entered my mind that these two legs should be amputated. The patient told us earlier that a vascular surgeon had suggested something similar, but that “so long as he could stand it”, frequent dressing changes could keep the infections at bay a little longer. The patient desperately wanted to keep his legs. He was content to amble around in spite of the pain and intensive wound care. He knew that time was not on his side, but he wanted all the time he could get. He was only in his forties.
But still, the thought lingered in my mind: these legs should be amputated. And it wasn’t because I thought it would make his life better. It was because it would make things easier for us: the visiting nurses, the vascular surgeon, the doctors, myself. I wanted those amputations to make things easier for everyone. I wanted to sacrifice those legs to lessen the overall burden of suffering in this world.
In medical school, we are taught to strive to be “humanistic”. We have an honor society dedicated to humanism in medicine, but we are never told exactly what it means. Humanism, as a worldview and a philosophy, believes in the maximization of human capability and possibility. Humanistic medicine believes that, by minimizing suffering, medicine and its practitioners enable others to reach a fuller potential. But this assumes that we are willing to engage in compassion itself – a word that means, “to suffer with”. The paradox of compassion is that its very definition calls us to take up the thing we wish to alleviate, to bear what we find intolerable in others. But what force can compel us to engage the very things we despise? In such a daily grind, should we be surprised that we think such profoundly disturbing and cynical thoughts as amputation for convenience sake?
As I gingerly picked at the remaining gauze, a story about St. Francis of Assisi came to mind. He came across a leper on the road one day and embraced the man, kissing him full on his rotting lips. St. Francis described it this way: “This […] is what I understood: all lepers, cripples, sinners, if you kiss them on the mouth — they all become Christ.”**
In that moment, I imagined that the diseased and scabbed feet I held were the feet of Christ. I thought about what it would be like to wash them and kiss them like the woman with her perfume and hair. I looked up at this man sitting before me, his face attentive and appreciative of the care we were giving. I looked up at the man before me and thought about all the factors that repulsed me from him: the rumors of drug abuse and non-compliance, the side-long glances between providers, the stereotypes I harbored, the ugly nature of the pathology itself. As I thought about all this, shame and love swelled inside me as my head swam among the putrid odors and silence. It made everything disorienting and holy, and I found myself deeply disturbed within my heart.
Outside of Jesus Christ, suffering has no real meaning except as something to be quantified and minimized. Outside of Christ, it is difficult to articulate the where and why and how of which interventions we permit and from which we abstain. Outside of Christ, our interpretation of suffering is entirely subjective and arbitrary, making it difficult to determine in which cases the magnitude of suffering and pity become “worth” the effort to draw near. Outside of Christ, drawing near to deformity makes us similarly deformed.
But in Christ, a transformation occurs that changes the both of us into more familiar and beloved forms. In Christ, the man of sorrows who took up our infirmities and iniquities and is now seated at the right hand of the throne of God, the object of our affection became deformed, and so now all deformity can become divinity. In Christ, we no longer see the futility of the flesh but the sanctity of the soul, and our hope is regenerated and renewed.
After all, it is by His wounds that we are healed.
When I survey the wondrous cross
on which the Prince of Glory died;
my richest gain I count but loss,
and pour contempt on all my pride.
Forbid it, Lord, that I should boast,
save in the death of Christ, my God;
all the vain things that charm me most,
I sacrifice them to his blood.
See, from his head, his hands, his feet,
sorrow and love flow mingled down.
Did e’er such love and sorrow meet,
or thorns compose so rich a crown.
Were the whole realm of nature mine,
that were an offering far too small;
love so amazing, so divine,
demands my soul, my life, my all.
**A Sermon for the Feast of St. Francis, 2008. St. Francis Episcopal Church, n.d. Web. 31 Mar. 2010. <http://www.stfrancisdunellen.org/sermon_10_5_08.htm>
One day a number of concerned mothers met with the minister to express their frustration and anger over the unseemly conduct of a particular boy in Sunday School. They did not want their children exposed to this child and feared what he represented. For it seemed that this boy was modeling “bad behavior” – verbal outbursts that sometimes involved profanity, a lack of sensitivity to other children’s personal space (occasionally biting them when irritated or provoked) and an unpredictably violent imagination when playing with toys. No Sunday school is equipped to handle problems of this magnitude. So upon expressing their indignation, the mothers requested that the minister call the child’s parents and ask that he not return to Sunday school. Obviously, there were family issues that needed serious and immediate attention.
The “problem child” was ours. My wife received the call early one morning. The minister was deeply apologetic and pastoral in his approach. But the damage had been done. What were we to do? Where could we go? Over the years, we had been through behavioral programs, family counseling, and psychiatric care. At this point, we were just beginning to come to terms with our son’s recent diagnosis: Tourette’s syndrome. Later, he would also be diagnosed with Asperger’s syndrome, bipolar disorder, and obsessive-compulsive disorder. But at this point he was about seven years old, and we knew only of the Tourette’s. We stopped attending this church. In fact, we stopped attending church altogether. — Thomas E. Reynolds, Vulnerable Community: A Theology of Disability and Hospitality
Engineering does not often apply directly to faith, but one method that has transformed the way I view community is a commitment to statistical honesty. In reading papers and critiques of clinical trials, one thing that comes up repeatedly is the question, “Is the community they engaged in this trial one that is diverse? Does it represent society in general? Can it translate into meaningful implications for the people I treat? Or were these participants selected in a biased way to favor a certain outcome? Is there a skew that limits how we may interpret and understand the world?”
One day it struck me to think about my own community with a similar critique. If I took a random sample of my friends from work, my neighborhood, and my church, would it look like it was truly random? Would there be an overrepresentation of certain types of people or a paucity in others? Would that statistical bias be a reflection of intentionality or a revelation in exclusivity?
I did a brief mental estimation and was not happy with the results. It is my natural human tendency to surround myself with others who think like me, talk like me, and act like me. What I have been grateful for in the work of medicine is being forced into contact with those who are very different from me, those whom, I am ashamed to say, I would not ordinarily choose as neighbors, associates, or friends. Through this means of grace, in the past year alone I have encountered former drug dealers and drug addicts, millionaires and mansion owners, wheelchair riders and deaf academics, judges and janitors, Holocaust survivors and pedophiles, saints and sinners. Though my coworkers (and myself) have often varied in expressions of compassion, we were obligated by both law and ethic to work with them in seeking their greatest benefit.
And so I found myself wondering, “Who is my neighbor? And have I shaped the courses of my encounters, friendships, and associations to suit their needs or my own?” I found that I did not like the answer: that my friends were mainly from certain ethnic groups, certain socioeconomic demographics, certain intellectual capacities and predispositions, certain persuasions of personality and even certain sects of faith. I had groomed and self-selected myself into becoming a statistical outlier in ways incompatible with the gospel, and it grieved me to think of those I had hurt in my exclusivity.
In this season of Lent, it is both sobering and encouraging to consider Christ’s disabled state, the divinity of he whose statistical cross-section of acquaintances included fishermen and Pharisees, tax collectors and political zealots, Samaritans and the blind, lepers and the governor’s wife, Centurions and servants:
Who, being in very nature God,
did not consider equality with God something to be grasped,
but made himself nothing,
taking the very nature of a servant,
being made in human likeness.
And being found in appearance as a man,
he humbled himself
and became obedient to death—
even death on a cross!
Note: Originally written several years ago.
My mom looks for Reasons the way some people look for spare change on the ground. She always has an eye out for them, an ear cocked to hear the faintest whisper of a consequence or a lesson. Most were simple illustrations of basic character: an irritating person was placed in my life to teach me patience; a flat tire the day after a stingy financial decision was a reminder to be more generous; an unexpected piece of good news was an example of God’s consistent goodness. Some links were easy to see and understand. Others were not.
I grew up listening to these narratives, and the concept of Reasons has left a permanent impression on my thinking. I suppose it is the way in which everyone learns to make sense of an otherwise haphazard world, how we maintain the hope to cope through difficult situations. But as I grew older, reason began to challenge the Reasons.
It started with the big questions. Were people really poor because they were lazy? Was HIV really God’s punishment to homosexuals? Was evolution really at odds with Christianity? And of course, the biggest of them all: is there a Reason for suffering?
For nearly each of these questions, I found the answer to be, “Perhaps, perhaps not.” We would go through endless cycles of arguments, some of which were very heated during which bitter words were exchanged. Sometimes I held on to prove a point, but I often found myself fighting out of sheer stubbornness and pride. I was challenging the Reasons because I began to doubt that there were any.
Madness and chaos. That was what disease seemed to me, the struggle between life and death in the hospital wards. Kind and generous patients suffered from horrific fates while those who were malingering and malicious fed off of the system’s generosity without punishment. The hospital was a new and disorienting place in which the old rules, the old Reasons no longer seemed to apply. Who lived and who died was less a function of morality as it was of biological processes, state variables, and an element of luck. In a world where so much was at stake, only the new reasons, the Evidence of hard data and tight correlations mattered. Even basic assumptions about standards of care were challenged and occasionally overthrown by the latest and greatest studies, and many reasonable, long-standing associations between health and disease disintegrated under closer scrutiny.
My own shift in perspective was subtle at first, and I wasn’t able to articulate my discomfort with it until one of my friends began using “evidence based arguments” for everything. He would launch into a political discussion with others and pepper them with the question, “Where’s your reference? Show me the study.” It was an irritating thing for him to do in the context of otherwise casual conversation, but the inflammatory nature came from the realization that most of what we say on a daily basis is complete bullshit. We speculate and make conclusions based on very little evidence because that is how we must deal with the complexities of daily life, but if we truly realized how uneducated and sporadic those decisions were, we would lose the confidence to make it from one moment to the next.
Something in me hardened. My faith in God, the Ultimate Reason, which had once been so strong began to settle for lesser things. God may count the hairs on your head, but I can tell you now that it will be exactly zero once your chemotherapy is started. You can pray for a miracle, but if we don’t amputate that leg tomorrow you might lose your life. Praying is good, but praying 20 hours outside in the snow is not; please restart your bipolar medications or we won’t let you out of here.
And so prayer, something I once loved to do, became more an act of desperation and a superstition than one of faith. I didn’t know what to pray for, mainly because I was tired of being disappointed. I began knocking on wood and crossing my fingers because they seemed to be just as effective: barely, if at all. I was tired of bullshitting and really just wanted to admit: I don’t know I don’t know I don’t know.
Finally, at the end of a long year, this illness knocked me out long enough to mull it over in my mind. True to form, my mother insisted that there was a Reason behind my lung collapse; the timing, the method, the stresses I was going through were all too coincidental to be due to anything else. And we talked, perhaps for the first time, about what it meant to use reasons and to look for Reasons. It reminded me of the Tower of Siloam:
There were some present at that very time who told him about the Galileans whose blood Pilate had mingled with their sacrifices. And he answered them, “Do you think that these Galileans were worse sinners than all the other Galileans, because they suffered in this way? No, I tell you; but unless you repent, you will all likewise perish. Or those eighteen on whom the tower in Siloam fell and killed them: do you think that they were worse offenders than all the others who lived in Jerusalem? No, I tell you; but unless you repent, you will all likewise perish.” — Luke 13
Whenever I talk at length about the nature of suffering, I mention an example a mentor once used. Suffering is just the push that tips a cup over; it has no bearing on what comes out. This is what I have come to believe about suffering, illness, death, and all Events with consequences for which we seek a Reason: they reveal what is inside me, deep down inside that refuses to come out otherwise. I may have no control over my environment or the insanity of this small earth we inhabit, but there is always something in me that I can ask to have transformed:
Do not be conformed to this world, but be transformed by the renewal of your mind, that by testing you may discern what is the will of God, what is good and acceptable and perfect. — Romans 12
Perhaps, in this way, I may attain to the resurrection of the dead.
I am not exactly sure of what prompted me to do it, but I began keeping a tally of all the pronouncements I have done. I never really knew this before, but pronouncements are done in a remarkably simple and impersonal way. Most patients who die in the hospital do not go with a bang but with a whimper. While some situations involve spectacular theatrics involving beeping monitors, charged paddles, and the cracking of cartilage from chest compressions, most patients die with a quiet, gasping sigh. I am still not sure which is more unnerving, but the former is what we typically imagine or see on TV during a pronouncement: a sweaty and distraught doctor ripping off latex gloves in frustration and listlessly intoning, “Time of death…”
What usually happens, however, is that the person will expectedly but spontaneously expire. Death is typically spotted from a fair distance and in most cases the family is cognizant of this. Sometimes hospice arrangements are made and the patient goes home to die surrounded by family and friends. Sometimes a volunteer in the hospital will keep a death vigil of sorts, sitting in a chair while reading a book or watching TV to pass the time as they wait to fulfill a promise “not to let anyone die alone.” Sometimes a nurse will make the rounds and discover that the patient is simply dead. It happens at all hours and in most floors of the hospital. Regardless, whenever the death is discovered a page is put out to whichever resident is on call to come by and make the official pronouncement, even though everyone already knows the truth.
This means that I usually know nothing about the patient or the family. I have to make an effort to commit the name and overall disposition of the patient to heart long enough to speak with the family and request their permission to grant or deny an autopsy. It typically takes thirty seconds to do the examination and less than thirty minutes to speak to everyone and document everything I need to before moving on to other things.
My little tally is nothing fancy, nothing more than a series of hatch marks in a small booklet of mundane medical information tucked into my white coat. So far, there have been five marks in two weeks. I can hardly remember the patients at all, much less their names or even what they died from.
But I remember the families. I remember the different reactions of different people, some joking and laughing about the whole affair, some quietly sniffling in a brother or a sister’s shoulder. I remember their words, which are often filled with appreciation and deep respect for everything that has been done for this house of memories. And I feel unworthy and deeply unsettled because I had no part in it… in fact, I never knew the patient, because the only reason I came into contact with him or her at all was because there was only an it left.
If the family was particularly effusive, I will write a little note of it in the chart: “No pulse, no audible heart beat; no corneal, pupillary, or gag reflexes. Family expresses deep appreciation for all staff.” And every single time, I am tempted to then write, “Kyrie eleison,” as has become my habit to say whenever I am otherwise speechless with sorrow. But not all the patient’s family members might appreciate that sort of addendum, so I say it to myself, place a little tick in my booklet, and move on.
To “pronounce” means to state, often with a degree of finality and certainty. But to me, it has also meant to describe and therein impart an element of meaning. Pronouncements have become a ritual of annotation, one that is suffused with meaning precisely because it is routine without being mundane. Small wonder that the closest I have come to intimacy with God in this heavily secularized profession have been in moments like these, where that which is ephemeral proceeds into the eternal.
Making a note of it is the least that I can do.
But someone may ask, “How are the dead raised? With what kind of body will they come?” How foolish! What you sow does not come to life unless it dies. When you sow, you do not plant the body that will be, but just a seed, perhaps of wheat or of something else. But God gives it a body as he has determined, and to each kind of seed he gives its own body…
So will it be with the resurrection of the dead. The body that is sown is perishable, it is raised imperishable; it is sown in dishonor, it is raised in glory; it is sown in weakness, it is raised in power; it is sown a natural body, it is raised a spiritual body.
I declare to you, brothers, that flesh and blood cannot inherit the kingdom of God, nor does the perishable inherit the imperishable. Listen, I tell you a mystery: We will not all sleep, but we will all be changed— in a flash, in the twinkling of an eye, at the last trumpet. For the trumpet will sound, the dead will be raised imperishable, and we will be changed. For the perishable must clothe itself with the imperishable, and the mortal with immortality.
- 1 Corinthians 15
There are many reasons why I love medicine. One of them is the ability to dig into the real “stuff” of human existence: life, death, suffering, love, pain, loss, redemption. Another is the speed by which I can get down and dirty. In less than fifteen minutes, I can go from being a complete stranger to a trusted stranger who can ask questions about that strained relationship you have with your uncle or the heartbreaking romantic fling you had last week or that strange mole on your inner thigh. Usually these interactions involve intimate but everyday details, though there are times when it still catches me by surprise.
I was shadowing around a hospice service when a nurse came to me and said, “Come.” She introduced me to a family who had been there for several days. The grown children were there for their mother, who was expected to pass away soon. They had already come to terms with the conditions of her impending death and were only waiting for the timing and that last, eternal moment in which to finalize goodbyes. I was ushered into the room feeling stiff and uncomfortable in my short white coat, which stood in stark clinical contrast to the tasteful and deliberately calming wood tones of the hospital room that felt more like a hotel suite. The patient had been breathing in rapid, shallow gasps of air… a pattern I would come to recognize all too readily over the coming weeks.
The family wanted a distraction. That much was clear as they peppered me with questions about my life. For once, I had to describe those intimate but everyday details about what it was like at my college, at medical school, working in the hospital, the weather in my town. And suddenly, in the middle of some inane and rambling description of my suburban and otherwise unremarkable life, the patient stopped breathing.
Immediately, the family members tensed up and asked me, “What’s wrong? You’re the doctor, right?” In my mind, I was surprised. After all, what were they expecting? Did they think she was going to jump out of bed and scream, “Hey, pay attention to me! I’m better now!”? They knew that she was dying; they knew that this was going to happen. I knew, and I had only been there a few minutes. But years of hospital training kicked in and the urge to do something forced me to stammer out a lame excuse to get the nurse.
The nurse was a pro. She had been doing this for years, and so she came in and calmly assessed the patient, whose heart was still beating faintly. The nurse listened quietly to the beat as it faded away, gently easing the children, those grown and adult children, into the reality that their mother was now gone. I still marvel at her skill and aura of tranquility. The family had time to say their final words and then they left quietly but gratefully. It was the first time I had watched a patient die without needles and tubes flying everywhere, without people scrambling for medications and defibrillators, without the repetitive creaking from a bed frame assaulted by the combined force of chest compressions on a stiff torso. I was literally overwhelmed with the sheer normalcy of it all, and what disturbed me the most was how this ritual of death had become, for a young doctor in training, the exception rather than the rule.
When did something so routine become bizarre? Have we learned nothing about death despite millennia of human existence and thought? When people ask me about the life of a “doctor”, they are most curious about the thrill of working with life and death. I see my own reasons reflected in their questions, but I am always baffled when they become uneasy when the discussion turns to their own mortality and fragility. I have asked most of my friends, “What happens when you die?”, and the most common answer is, “I don’t know, I haven’t really thought about it much.” More often than not, they also imply, “I don’t want to, either.”
Even though I hadn’t eaten all day, I waited by that patient’s room throughout the early afternoon because I wanted to see what happened next. So I helped tidy up the body. I helped straighten her out, removed the last offending bits of tubing and plastic, and cleaned up the sheets. I helped the funeral home director transfer her to one of those black body bags you see in the movies, helped zip the thing up and waved goodbye as she was wheeled down the hallway and through a set of heavy double doors.
These past few weeks have been filled with congratulations and accolades as I receive my medical degree and move on towards residency. I have told people not to celebrate too much yet and that the “worst” is still ahead in so many ways… and yet, perhaps there is something special in celebration because it remembers what we have come through and it looks forward to where we are going. A book I’ve been trying to get through talks about the theology of memory, that the act of remembering is to re-live in bits and pieces. Sometimes the act is intentional, as it was for those family members remembering inexpressible things about their mother. Sometimes it is not, in the same way that that family continues to spring into my mind. As we commemorate those who sacrificed their lives that we might live, let us remember. Perhaps doing so restores a little life, dignity, and meaning to those who have died. Perhaps it will do the same for we who share the same fate.
For everything there is a season, and a time for every matter under heaven:
a time to be born, and a time to die;a time to plant, and a time to pluck up what is planted; a time to kill, and a time to heal;a time to break down, and a time to build up; a time to weep, and a time to laugh;a time to mourn, and a time to dance; a time to cast away stones, and a time to gather stones together; a time to embrace, and a time to refrain from embracing; a time to seek, and a time to lose; a time to keep, and a time to cast away; a time to tear, and a time to sew; a time to keep silence, and a time to speak; a time to love, and a time to hate;a time for war, and a time for peace.
- Ecclesiastes 3