how to create racial disparities without saying it's about race

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It has been months since I’ve last posted here. Way too long. And to my blog readers, I do apologize. While no excuse for neglecting my writing practice is sufficient, the one that comes the closest is because I have been vigorously promoting my book, followed by desperately trying to catch up with the day job.

 

I’ve had the opportunity to speak in several venues. I’ve done lots of readings and interviews for daytime TV, newspaper and radio. I’ve felt honored to do each and every one of them, from the reading in Atlanta to an audience of just four people to the radio interview with NPR Forum’s Michael Krasny, reaching a worldwide audience

 

But some of the most memorable words were spoken in August by Perri Small on her live WVON 1690AM radio show, The Talk of Chicago, in the south-side of Chicago:

 

“C’mon Dr. Grubbs, you know it’s because we Black!”

 

We sat with headsets donned, microphones inches in front of our faces. Clearly, I wasn’t calling out racism directly enough as the reason why 3 Black people develop end-stage kidney disease for every White person who does, but receive only 1 of every 4 kidney transplants. Why Hispanics are not much better off.

 

“Nobody is going to come out and say it’s because we Black,” I explained. Nobody has to. Nobody has to because it is woven into the fabric of how things are done in such a way as by design it mostly affects the poor and people of color.

 

My dialysis patient, Mr. Garcia, is an example of how.

 

I started taking care of Mr. Garcia seven years ago when he started dialysis. He was in his late thirties and looked deceptively healthy for someone without functioning kidneys. He was also an undocumented immigrant, but somehow managed to get a lawyer who helped him gain citizenship five years later. It was at this point that I could refer him for transplant consideration.

 

He was initially told he was ineligible for a kidney transplant because he didn’t have sufficient “social support.” The transplant center required that potential candidates provide the names and phone number of five people who would be available and willing to help him after transplant.

 

“Why would you tell them you don’t have any social support?” I asked him on my dialysis rounds one day.

 

“Because I don’t,” he shrugged. He was unmarried and childless and his extended family was in another country. He was also fiercely proud and independent and didn’t want to burden anyone or even ask for help.

 

“But you have three roommates and friends. You don’t think they would be willing to do things like pick up your medicine from the pharmacy or drive you to a clinic appointment? That’s the kind of support they are talking about.”

 

He stared back at me wide-eyed and nodded. It hadn’t been explained to him like that.

 

“You better go back there and fill out that piece of paper with their names and phone numbers,” I commanded.

 

And he did. He had cleared another hurdle, so the evaluation continued.

 

Mr. Garcia is usually late for his hemodialysis treatments, which means he rarely gets his full treatment and some of his blood test results aren’t as pretty as they ought to be. The social worker at the kidney transplant center expressed concern that “this failure to comply with medical treatment” meant he would not take excellent care of a new kidney, thus wasting a kidney that 14 other “medically compliant” patients die waiting for every day.

 

It didn’t matter that Mr. Garcia is late because he works as a dishwasher and there is no dialysis shift that will accommodate his schedule. Not the shifts that start at 5AM, 9AM, or 1PM. And not his actual shift that starts at 4PM. Dialysis unit schedules are designed to maximize the number of patients that can have dialysis every Monday, Wednesday, and Friday and every Tuesday, Thursday, and Saturday, in order to maximize profit, not patient convenience. If Mr. Garcia worked a higher skill level job, like the kind where one couldn’t be replaced so easily or that allows more flexible working hours, or if he was part of a family that didn’t need his income, it would be easier for him to be “medically compliant.”

 

I called the transplant nephrologist and argued Mr. Garcia’s case. He said he agreed with me that Mr. Garcia’s reason for not being on time for dialysis was all the more reason for him to get a kidney transplant, not one to disqualify him.

 

But I don’t know what he or the others on the kidney transplant team will say behind the closed doors where they sit and decide who will or who will not be placed on the wait list. What I do know is that if he is not placed on the wait list, it won’t be because he is Hispanic. It will be because a society that systematically restricts where people of color live, work, and are educated ensured he would not meet the transplant center’s eligibility criteria.

checking my own biases

Alexandra Garcia was just 20 years old when came to me from the pediatrics nephrology clinic with urine that contained blood I could see only with the help of a microscope and nearly a gram of protein when normal is less than 150 milligrams. The reason why was presumed to be the same as the reason that caused her mother and brother to also have microscopic hematuria and proteinuria—thin basement membrane disease.

Thin basement membrane disease is caused by a defect in a type of collagen passed on in families that, as the name implies, makes the membrane covering of the kidneys’ filtering units—the glomeruli—too thin to keep all the blood and almost all the protein in the body that a normal thickness membrane can. If I had to have a kidney disease, this is one I would choose because people with it do really well.

Alexandra’s mother had a kidney biopsy to prove she had thin basement membrane disease, but I would continue to “presume” with Alexandra because our biopsy needle wouldn’t be able to reach her kidney—she was nearly 300 pounds and built like a Fuji apple with limbs. Her weight alone could explain the protein in her urine, causing parts of her glomeruli to scar down to non-functional nubbins, so her prognosis probably would not be as great as if she had thin basement membrane disease alone.

No matter, because the treatment was the same: an ACE inhibitor. Angiotensin Converting Enzyme inhibitors are a class of blood pressure medications that are especially good at lowering the blood pressure within the kidneys so the filters’ holes have a chance to heal and allow less protein to pass through. She was already taking a small dose of an ACE inhibitor prescribed by her pediatric nephrologist. My job was to advise her to lose weight and increase the ACE inhibitor dose until the protein in her urine was less than 300mg unless she became dizzy from low blood pressure first.

Nearly a year later, despite visits to the clinic every 3 months the amount of protein in her urine was the same. This was in part because her weight was the same too and because she wasn’t taking her ACE inhibitor every day as prescribed.

“What’s going on, Miss Garcia?” I asked. Maybe she was having trouble remembering to take it or was having a dry cough, a common side effect of ACE inhibitors.

“I don’t know,” she giggled. “Sometimes I think the medicine kinda makes me a little tired.” She giggled again.

She giggled like a little girl, not like the young woman she was. And my patience had worn thin for a giggly little girl who couldn’t give me a legitimate reason for not taking care of herself.

“OK, I’m gonna need you to put on your big girl panties and do what you know you need to do to take care of your kidneys,” I lectured and sent her on her way with a prescription for an ARB, an Angiotensin II Receptor Blocker, as a replacement for the ACE that would work similarly and hopefully would not make her “kinda tired sometimes.”

Two weeks later, I got an email from her primary care doctor with a gentle reminder that we all needed to be more diligent in our ensuring our female patients of childbearing age are using effective birth control when we prescribe ACE inhibitors and ARBs. It is well-known that ACEs and ARBs can cause birth defects. Apparently Miss Garcia told her primary care doctor that she was only sometimes taking her medicine because her period was late.

My heart dropped.

I could try to tell myself it didn’t occur to me to counsel Miss Garcia about birth control at every visit as I did with every other woman of childbearing age I’d cared for when prescribing ACEs and ARBs because she came to me already on an ACE or even because of her childlike demeanor. But the truth is, it hadn’t occurred to me that she was sexually active because she was morbidly obese, built like a Fuji apple with limbs.

I’ve long argued that Medicine is not immune to biases because all humans have biases, both conscious and unconscious. Biases that can limit our thinking. Biases that can bring harm to our patients. Biases that we need check ourselves for when we find ourselves doing something different from “standard care.” I had failed to take my own advice.

And now all I can hope is that I’ll do better next time. And that Miss Garcia’s baby will be alright.

the power of prayer

“I appreciate your time and your concern, Doctor, but I have a strong faith in God and I believe He will see me through this.” This is what Maru Johnson said as I attempted to persuade him to follow the cardiologist’s recommendation to have coronary artery bypass surgery (CABG or ‘cabbage’). Just a few days prior he had a major heart attack that landed him in the ICU. The cardiac catheterization had shown that all three of the major blood vessels feeding his heart muscle were severely narrowed and without surgery he was at very high risk of another heart attack.

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I waffle between believing there must be a Higher Power connecting us all and giving meaning to all this and believing that the Bible is a book of fables written by men seeking to bend people to their own wills. Between calling “Lord Jesus, God Almighty please help this stupid baby, Lord!” like an old Southern Big Mama and trying not to picture the stringy-brown haired, pale-skinned Jesus image I was raised with when I pray. So maybe this is why it bothers me when patients use their belief in God to shun medical advice. As if no one before them believed enough to be spared.

It especially bothered me coming from Mr. Johnson. Because he had done it before—with kidney failure 2 years prior.

Like many patients approaching end-stage kidney disease, he was among those who believed in God’s Will. Either God would provide a miracle and save him from the doctors’ promise of dialysis, or he would simply accept that it was his time to die. And like pretty much all of them, when the symptoms of kidney failure arose and the time to die was imminent, dialysis was suddenly part of God’s plan.

I reminded him of this. How many patients said the same thing about kidney failure. He nodded, remembering. He smiled at me, believing that I was finally understanding where he was coming from. But he didn’t understand the point I was making—that they all, himself included, ended up on dialysis because prayer could not spare them the certainty of death from kidney failure without a replacement through dialysis or transplant.

The same applied here.

Just weeks earlier when I made my weekly rounds in the dialysis unit, Mr. Johnson was usually too sleepy and too uninterested to talk to me. Systolic blood pressures above 200 didn’t faze him. He could lose the equivalent of a teenaged girl and still be overweight. He didn’t know his medications and rarely bothered to take them.

But the heart attack scared him straight like a wayward teenager forced to spend a week in prison with hardened criminals. He vowed to start taking his medications as prescribed. He would follow the recommended diet. He would even stop smoking. His wife, five months pregnant with their fifth child, would make sure he did.

I was happy to hear that he was finally ready to start taking care of himself, but even if he had been for the last two years he had been on dialysis, the heart attack would not have been a surprise. Like diabetes, advanced chronic kidney disease by itself places a person at the same risk of a heart attack as someone who already had a heart attack. I was worried that his newfound determination was too little, too late. And that adding prayer wasn’t enough to get him over the hump of the inevitable.

Not to say the surgery would have guaranteed his longevity. Sure, he could die on the operating table. But surgery was his only chance at the possibility of longevity. This problem would not go away.

“The same way God gave us dialysis, He gave the surgeons the ability to bypass clogged blood vessels,” I tried to persuade him. His smile faded. He didn’t see his action as part of God’s Will.

“Again, Doctor, I appreciate your time and your concern, but I have discussed this with my family. And we believe He will see us through this,” he said. And the conversation was over.

His belief in God eased his fear in this horribly frightening situation. That was a good thing that I was all for. But to use that belief as an excuse for not having to deal with the reality at all saddened me. It didn’t have to go this way.

He left the hospital the next day, only to return to the ER a month later complaining of chest pain for three days. Still, he remained steadfast in his decision to forego surgery, not seeing this as God’s Warning.

A month later he died of a massive heart attack. Just shy of his fortieth birthday.

truth be told

I had just finished presenting my body of research for the prior six years in hopes of convincing the committee I was worthy of promotion from Assistant to Associate Professor of Medicine when the chairperson said, “It is clear palliative care is your passion, so you should stop wasting your time with the dental research." I. Should. Stop. Wasting. My. Time.

Now, truth be told, I agreed with her. Not because I didn’t think I was doing important work—I published 2 papers showing that people with severe periodontal (gum) disease and normal kidney function were much more likely to have clinically significant kidney disease after just five years than people who didn’t have severe periodontal disease. I was working with a colleague to find evidence of bacteria that caused periodontal disease in kidney biopsy tissue. I was even running the longest randomized controlled trial to find out if treating the gum disease would slow down how fast the kidney disease worsened. And I was one of only a handful of people around the world doing this work.

Rather, I agreed with her because she was right. Palliative care for patients with kidney failure was my passion. And the only reason I was doing the dental work (other than the obvious that it would be cool if taking care of peoples’ mouths could slow down kidney disease) was because I didn’t discover palliative care first.

Palliative care crossed over into every area of my work life. I could see all the research that was needed to help patients, families, nephrologists, and other clinicians realize that dialysis isn’t always the best thing to do and that dialysis isn’t the only thing that should be done for people dealing with end-stage kidney disease. I had a vision for how we could better take care of our patients with advanced kidney disease. Hell, I was even working on figuring out how to incorporate teaching communication skills, symptom management, advance care planning, and all the other things that go along with palliative care into the nephrology fellowship training even though I am content to work on my little projects in my little office—simply because I don’t want our program to keep graduating new nephrologists that can calculate the shit out of how much hypertonic saline to give a patient with very low blood sodium level, but can’t look a person in the eye and talk about the life and death he can expect with kidney failure.

But still—it ain’t every day somebody says some shit that feels like a Mortal Kombat finish ‘em body blow to the chest. Yet at the same time, there is something quite validating about being pushed to do what your heart already wanted to do. So here’s to 2017 and to fulfilling my work heart’s passion in a way that I hope helps others (and gets me promoted ;) )!

the day of after and before

A Facebook friend posted a poem comparing election day 11/9 to 9/11. It reminded me of a poem I wrote back during my internal medicine residency, the 3 years of intense on-the-job training after medical school one has to complete in order to become a board certified internist. The poem describes how it felt to be a doctor that day. The day after the election, I had to perform a kidney biopsy and see my hemodialysis patients. It didn’t feel much different from the day of 9/11. But this day before Thanksgiving, I am trying to focus on being thankful that slightly more than half of voters voted for all of us and not for hate or just one issue.

 

MD 9 11

Human bombs

Exploding

Though I know no one

I ache

as if a part of me

is dying

My world’s fortress

Collapsing

While I move through

this day

Without so much as a missed calculation

And all at the speed of yesterday

Despite the numbness

of my body and mind

Display of emotion here

Equals weakness

And no one here

dares appear weak

Be strong

Or Mr. Smith dies

Be strong

Or Mrs. Brown cries.

Finally

They are all tucked in

For one more night (I hope)

Finally

I get a few moments

To see to myself

Finally

I get a few moments

To slow down

And so I sob out loud

My entire drive home

While all other eyes

Are on the road.

                                       —Me

                                                       9/28/2001

i love halloween

I get into Halloween. Spend the weekend making a costume into it. My teenaged son begging me not to take the usual BART commuter train to work so as not to embarrass him into it. I love Halloween for the fun of it. One doesn't need to have a sweetheart, family to sit around a dry turkey with, or anyone to feel obligated to buy a present for. Halloween is just plain fun.

Today I was Ms. Brown M&M. At work. All day. Only came out of it to refluff. I passed out candy to all the patients on dialysis—not chocolate as it has lots of potassium in it, which patients on hemodialysis have to limit their intake of. It felt good to make them smile at my silly costume and the unexpected treat. A brief distraction from the reality that is end-stage kidney disease.

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