How We Do Harm (17 page)

The disease has caused complications, which include pleural effusion, fluid in the chest, which keeps the lungs from expanding.
We are concerned about pericardial effusion, fluid around the heart, which can negatively affect the pumping action of the heart muscle.
His lungs are not functioning well.
He may have pneumonia, which may be due to an obstruction in his bronchial tree, the windpipes.
I explain that when cancer narrows the windpipes, we often see an infection.
Pneumonia is frequently the immediate cause of death.

“We need to decide what is reasonable,” I say.
“We need in whatever we do to stress comfort for Mr.
Huzjak.”

I speak slowly, deliberately.
I know that every poorly chosen word can and will work against me.
After long hours of running from one task to another, I have to change speeds, I have to slow down, I have to demonstrate compassion, express it as clearly as I can.
I have to understand where they are coming from and get to the fundamental cause of their resistance to accepting death as a final destination for a sick man.
Death in this case is not a failure of the system.

I know how much is riding on this conversation.
If it goes well, this family will bid farewell to Huzjak.
If it goes badly, this man will suffer through a plethora of procedures that can only do harm.

I lay out the multiple-choice problem before us.
We must pick one of three possible options.

I start with the most absurd: We perform diagnostic studies and treat all of these problems.
This will cause their father and grandfather a lot of discomfort at best, agony at worst.
We will not be able to control the pain with anaesthesia.
I explain that Huzjak’s respiratory system is fragile.
Drugs that control pain also decrease the respiratory drive in his brain.
Narcotics that control the pain also bring closer the day when he will be put on a ventilator, and once he is on it, there he will stay until his last breath.

I go through the list of invasive procedures that are in store for Huzjak: a scope placed through his mouth and on into his lungs to look for pneumonia and obstruction, tubes placed into his chest, spinal taps, and possibly even medicines injected into his chest and spine.
These
may
prolong his life—briefly.

May
is the key word.
Since we can’t assess him neurologically, I can’t say how far gone he is.
I don’t even know whether he is conscious.
Has his cerebrum stopped functioning?
Is he driven only by his brain stem?
I know that he screams from pain, but I have no idea whether this is a primal response or evidence of more complex brain processing.

Without question, we will increase his suffering, but the result will not change.
He will have widely metastatic, untreatable cancer from which he will die.

The second approach—which the medical team and Claren favor—is to treat the pneumonia with antibiotics and watch his hydration.

If he improves, we can do a few more things with the idea of making him more comfortable.
We can drain the fluid from his lungs through a small catheter, rather than through a chest tube, which is a thumb-size tube placed between the ribs that can be uncomfortable.
We would still pay particular attention to his comfort level, and if these smaller interventions caused him pain, we would give him morphine as needed.

If he were to stop breathing or if his heart were to stop beating, we would not resuscitate him.
Resuscitation involves pumping on the chest and inserting a breathing tube in his mouth down into his lungs to pump oxygen in and out.
It can also involve shocking him to try to restart his heart.
We would instead let him go peacefully.

The third option is to give him pain medicine now and let nature takes its course.
When he dies, we would not try to bring him back.

Since we are unable to ask Mr.
Huzjak himself, we have to look to the family to decide what he would want in this situation.

Do you have any questions?

The family is silent.

I throw out another question.
Is there anyone else that you would like me to talk to?

I have finished talking.
The truth is on the table.
Have my arguments pierced the wall of grief and denial?

Will the older sister break the silence, or will she defer to the brothers?

I wait.
I watch.

The older brother looks up from the floor and stares into my eyes directly, like a cop.
“What’s his condition?”
he asks.

I am startled.
Does he want a classification: grave, critical, stable, a one-word descriptor of the sort you see in a newspaper?

I realize I’ve fucked up.
My presentation was too long and detailed.
The basic information was lost and the larger questions missed.

“What about nutrition?”
asks the younger brother even more aggressively.

What about it?
I am taken aback by his tone.
However, the man asked a question and he deserves an answer.
Calmly, in a nonconfrontational way, I explain that we are concerned about nutrition, but the issues in order of urgency are his respiratory status and shortness of breath, his pneumonia, which can impair his respiratory status and his cardiovascular status.

I explain that his albumin, a marker of nutrition, is low.
This is common in lung-cancer patients, but it isn’t so low as to say that death from starvation is imminent, whereas death from these other problems is imminent.

So much for my hope of getting through to the Huzjaks.
I am tired.
I sense distrust not unlike the kind we had for doctors when I was growing up in black Detroit.
I remind myself that in my state of mind I have no right to jump to conclusions.
I haven’t slept all night.
My judgment may be intact, but my instincts are dulled.
What should I have done differently?

Should I explain the word
imminent
?
I ask myself.
Is it too long?
Am I being a tired asshole?
I bite my tongue.
Maybe this black doctor is resorting to classism to counteract racism, real or perceived.
None of this is good.

The younger Huzjaks ask why their father is on a nasal cannula and not an oxygen mask.
I explain that he has a kind of breathing problem called carbon dioxide retention that can be made worse if he is put on too much oxygen.
His lungs are in such bad shape that he cannot get all the carbon dioxide out of his body, so his brain has become accustomed to high levels in his blood.
The only reason he breathes is the brain stem’s desire to get oxygen into his blood.

The wife of one of the brothers asks where I went to medical school.
I recognize the question for what it is, a passive-aggressive way to avoid dealing with the problem.

I answer that I went to college and medical school at the University of Chicago.
I let her know that others agree with me on what we are up against: a murderous disease that we can’t slow down, let alone stop.
We may be able to prolong Huzjak’s misery, but at a cost of causing great pain.
Claren has reviewed all the data, as have the doctors in the ER, as have the doctors on my team; there is universal agreement.

I have given them carefully reasoned, compassionate information and now list the white people who agree with me.
The situation is absurd, and I know it in real time.

I wonder whether she knows that the University of Chicago is a good school.
Nineteen eighty-six is just a few years after the
Bakke
decision, and talk of affirmative action is still ubiquitous in the news media.
While it’s tempting to ascribe the younger Huzjaks’ distrust exclusively to racism, it may not be accurate.

I know that even when my white colleagues try to impress on the families of patients that the time has come to say good-bye, they run into resistance.

One brother asks what resuscitation is—like if his heart stops, or if he stops breathing.
This is an appropriate question, perhaps even an opportunity to build understanding.

I describe resuscitation.
I mention breathing for the patient with an Ambu bag and placing a tube down the throat into the lungs.
I explain that a patient on a ventilator, with a tube in his throat, feels as if he is drowning, except that feeling goes on and on.
I talk about chest compressions to get blood flowing if the heart stops.
I describe electric shock.

Resuscitation is something I do well, maybe even get a thrill from.
But I always got a nauseous feeling after a successful resuscitation.
It is appropriate for a healthy person who has one problem causing the arrest.
If you restart the heart or restart the breathing, you buy time, fix the underlying problem, and the person ends up returning to life, perhaps even normal life.
Unfortunately, in internal medicine, we do lots of resuscitations on patients who are destined to need it again in a few days and will continue needing it until they arrest and will not come back or until someone has an attack of common sense and says, “Enough!”

Huzjak’s daughter begins to talk, saying that she speaks for her brothers.
It’s now obvious that she plays this role often.
She wants everything done to save her father’s life.

“Everything reasonable or everything possible?”
I ask.
I tell her that we feel that resuscitation is not reasonable in the event of cardiac or pulmonary arrest.

“Everything possible is everything reasonable, as far as we are concerned,” she says.

*

AS
I walk to the residents’ office, I feel sick to my stomach.
I think about the younger Huzjaks.
They will not feel the excruciating physical torture that being pulled from death will require.
Their father will.
They will not be performing these senseless acts of medical torture.
I will.
They will not be paying the bills.
People paying higher health insurance rates will.

Economists have a name for this: “a moral hazard.”
A moral hazard occurs when a person making a decision is protected from its consequences.

Soon after meeting the Huzjaks, I sit down and, just for the hell of it, calculate how much useless, harmful care for this man could cost the system.
I get to $250,000 just for the care we had provided and the care we are about to provide.

The number seems horrifying.

I am in the beginning of my career, and I believe that at some point problems of cost of care and elimination of useless, unscientific care would be solved either through controls by insurance companies or by the government declining to pay.

My prediction is wrong.

Now, three decades later, as I sit down with a pad of paper and start adding up expenses for a hypothetical patient similar to Huzjak, I realize that today he would probably receive a great deal more chemotherapy, perhaps well beyond the point where life extension or even delay in progression of disease are a possibility.
The willingness of insurance companies to pay, and the willingness of private physicians to make a buck, have extended the standards of care enormously from three decades ago.

In addition, had he been brought into an ER in 2011, Huzjak would have been subjected to even greater abuse and an even larger number of obscenely expensive and ridiculous medical tests and procedures.
There would definitely be more imaging—a magnetic-resonance-imaging study would be ordered to assess his brain damage.
There would be CTs, lots of them.
A CT in 1986 was a big deal.
A patient stayed in the machine for more than an hour.
Now, the rate-limiting step is how quickly your orderlies can get patients on and off the table.
I can easily see the bill for a patient like Huzjak adding up to $600,000.

No one seems to argue with the estimate that about 24 percent of Medicare spending and about 15 percent of all health spending is incurred in the last year of a patient’s life.

Why such a high proportion?
Yes, a person whose body is failing is going to need a lot of medical care.
Yet fleecing the system is in these numbers, too.

I have seen doctors do some horrible, irrational things under the guise of seeking to benefit patients.
I have seen my colleagues disregard data in ways that ultimately benefit them financially: a bone marrow transplant for a breast-cancer patient, prophylactic doses of Aranesp and Procrit—these are only a few examples.
The system rewards us for selling our goods and services, and we play the game.

However, I can’t think of a single anecdote of doctors creating or encouraging situations where a patient who is ready to die is instead subjected to aggressive care.
Even the greediest of doctors refrain from such behavior because they know that it’s wrong.
It’s so wrong that you can’t possibly justify it.
Yet, patients demand this kind of care, and we oblige.

Americans don’t understand death.
We cannot accept that death will come, and thus we cannot make a plan, talk reasonably about it, work our way to understanding, to the basic part of our humanity.
This attitude—a combination of perpetual optimism, refusing the dark, and not living in reality—is unfair to patients, doctors, and insurance companies.

*

AFTER
receiving my marching orders from the younger Huzjaks, I search for explanations.
Perhaps I care about Mr.
Huzjak more than his flesh and blood.
Perhaps they don’t want to face other relatives who might blame them for having let old Huzjak die.
Perhaps they don’t understand the reality of their father’s future.
Perhaps they are unable to accept it.
Perhaps I fucked up.
Perhaps it’s pigmentation.
Perhaps it’s class.
My self-flagellation sets the stage for the torture I will have to inflict: this man will arrest and we will try to bring him back.
He will experience the sensation of drowning as we intubate him and try to breathe for him.
He will have pain and discomfort that I will not be able to control.
No, let’s call things by their proper name: he will have pain and discomfort, and I will exacerbate this with the pain and discomfort of futile treatment.

We aren’t really trying to benefit Huzjak; we know we can’t.
Instead we do harm, because we are instructed to do so.

I tell the intern that Huzjak is a full code, that I failed to get a DNR or any limits on his care.
If he has a cardiac or respiratory arrest, we are obligated to perform lifesaving measures.
Whatever it takes.
“We have to four-plus him,” I say.
It’s the equivalent of saying 110 percent.
We have to really try to resuscitate the guy, not just go through the motions.
We have to be sincere in our efforts as we suspend disbelief.