Even kidneys are political

kw: book reviews, nonfiction, medicine, kidneys, organ transplants, race

A good friend of mine was already on hemodialysis when I first got to know him. We are church friends. His life was quite restricted, not only by the need to visit the dialysis center 3-4 times weekly, but by the severe fatigue that is a side effect of the treatment. When your kidneys are not producing any urine, fluid accumulates. After a couple of days, you've gained a few extra pounds. Those pounds are extracted by the dialysis machine, along with urea and other toxins. But the best of the machines is a poor substitute for a real kidney. It will keep someone alive, but not very healthy. Just the rapid removal of fluid causes severe cramping and headaches.

Fortunately, my friend was able to receive a transplanted kidney a few years later. It made a huge difference in his life! He told me right after the transplant operation that the typical "cadaver kidney" lasts between 10 and 20 years, and then the body begins to reject it, in spite of the best anti-rejection medicines. He was a bit luckier than average; it lasted 19 years. Then he was back on dialysis.

This time, one of his daughters insisted that she be tested to see if she was a "good match", histologically speaking. And she was, a very good match indeed. She donated one of her kidneys, and he is back in comparative good health. Because the match is even better than before, and because of further advances in medical treatment, this kidney is more likely to last him the rest of a good life (he isn't as old as I, but old enough to make plans no more than a few years into the future).

My friend is Asian. I wonder what the outcome would have been if he were Black. After reading Hundreds of Interlaced Fingers: A Kidney Doctor's Search for the Perfect Match, by Vanessa Grubbs, M.D., it seems likely he'd have died by now. The book is partly memoir, partly a medical travelogue, and partly an exposure of a medical system that has not yet become free of racism.

Vanessa and her husband, Robert Phillips, are Black. As a Black woman in medical school, and as a Black, female M.D., she had trouble enough getting the residencies and fellowships she needed for her chosen specialty. Now, part of that may have been that her choices didn't solidify until she had nearly finished medical school. The "solidifier" was Robert. He was already in advanced renal disease when she met him, and being kept alive with hemodialysis.

Love is really blind, it seems. Knowing what she knew (not enough, it seems), she still fell in love with him. She offered him one of her kidneys. After a lot of discussion, and testing that showed how good the match was, he accepted. She had already found out that Blacks on dialysis typically wait an extra 2-4 years, compared to a White or Asian, for a transplant to become available. It is not just a numbers issue. Blacks are seldom put on the transplant list as early as Whites or Asians, and until recently priority on the list was according to time on the list, not time since dialysis became necessary. That has since been changed, but it is not the only inequity in the system.

You'd think, once the transplant was performed, everything would be copacetic. The transplant doctor made a minor error or two, errors of, as Dr. Grubbs puts it, "laziness." Another surgeon, a more diligent one, had to re-install the new kidney so its outlet would not clog! There is much more about issues that a White doctor would probably never notice, but that she did notice.

Along the way, there is a lot of information about kidneys and kidney disease. Dialysis patients seldom talk about their troubles outside their family; I know my friend was pretty quiet about it. But the plain fact is, a dryer-sized machine is, even as we approach the year 2020, a poor substitute for a quarter-pound organ. And it all comes down to glomeruli.

The title of the book describes an image like this one, a highly magnified portion of a glomerulus. The glomeruli (plural of glomerulus) are tiny, highly-structured tangles of blood capillaries situated each in its own capsule. The capillaries have some special features that make them efficient filters, to remove the right amount of fluid and toxins from the body. The toxin-laden fluid collects in the capsules. Tubes from all the capsules are gathered together to feed the ureters that send urine to the bladder.

A glomerulus is small. There are about four of them in each cubic millimeter (a pinhead) of inner kidney tissue; about 4,000 per cc. This comes to 2/3 of a million per kidney. And they aren't just passive filters. They contain enzymes and other active "machinery" that cooperate in blood filtration. It has been said that the kidney is second only to the brain in complexity.

Because of this complexity, it will probably be a good, long while before researchers figure out how to grow someone a new kidney from their own stem cells, making auto-transplanting a reality and eventually closing down most dialysis centers. It is one thing to grow someone a new ear or fingertip (we're nearly there right now); but even growing a liver would be easier.

I hope, long before auto-transplantation is developed, that the remaining racial disparities are dealt with. In addition to race, there is money. I'll let a quote from the book suffice:

"We get paid much more to keep someone on dialysis than to keep them off it…It's profitable to build another dialysis center, but we haven't figured out how to build comprehensive palliative care services."

The fact is, not everyone in end-stage renal disease should have dialysis. Until the kidneys totally fail, certain palliative care and other measures can afford a person a better quality of life. And even at the very end, some people have the fortitude to decide, "I've had enough of this. Uremia isn't the worst way to die; better than most. It's time to go." Very few doctors, who got into the business to "help people", usually internalized as "help people not die", are willing to offer a terminal patient every option, rather than just the options of "fighting the disease."

I am not sure how effective an activist Dr. Grubbs is, but the presence of this amazing book is a great first step to exposing some issues that have been swept under the rug.

Declared dead, or made dead?

kw: book reviews, nonfiction, medicine, organ transplants, ethics

There were 28,114 organ transplant operations in the US in 2010. In that year, the gross income of the "organ transplant industry" was about $20 billion. That is more than $700,000 per transplant. In 2011, 6,669 people died who were waiting for a transplant. Had organs been available for every one of them, it would have generated an additional $4.7 billion in revenue. When that kind of change is on the line, many people's ethical compass can become quite skewed. For a bit more detail, see note 29 on page 328 of The Undead: Organ Harvesting, the Ice-Water Test, Beating-Heart Cadavers—How Medicine is Blurring the Line Between Life and Death by Dick Teresi.

This book is a splash of fresh-off-the-glacier ice water in the face of anyone considering being an organ donor. Did you ever watch the 1978 movie Coma, or read the book (1973)? At the time, it was fiction. Very little of it is fiction any more. Only one of the book's premises is still not fulfilled: there is no widespread practice of over-anesthetizing people into a coma to make their bodies available for "harvest". Note that I wrote "widespread"; there have been a few such cases, but they went nearly unreported. There is increasing sentiment among transplant proponents to make this also come true!

Actually, anesthesiologists are a major group that works for more restraint in organ harvesting practices. Author Teresi interviewed a number of them who told of being ordered not to apply anesthetic to "brain dead" patients, even though they were showing signs of agony as they were dissected and their organs removed. It is widely thought by transplant doctors that anesthetic will damage the organs in some way, making them less likely to "take" in their new hosts. This has not been shown to be true, but evidence is very scanty, precisely because so few transplant harvesting dissections have been done with anesthesia!

The book is very thorough, and thoroughly researched. It took over a decade. On a subject of this importance, you don't want to hurry. The author is reporting the facts as they have been presented to him. He is not anti-transplant, but some doctors evidently think he is. He has garnered rather furious reactions from a few. He has been accused of homicide by proxy, for any people he might discourage from being an organ donor. And it is a fact that when someone who could donate dies without having any organs "used", three or four people will probably die as a result. But they will die anyway, just perhaps a little later.

The opening section of the book covers this matter at length. The death rate hasn't changed in thousands of years: one per person. Medicine has two parts. One is improving wellness so that the years you have are better years. The other is attempts to delay death. A life "saved" is actually a death postponed. Death-postponing medicine is a Tetris game. You might zap block after block for a long time, but sooner or later one is going to make it to the bottom row, and "Bing!", the game is over.

A friend of mine had a kidney transplant about ten years ago. He was told that a kidney lasts ten to twenty years, but sooner or later the anti-rejection drugs can't keep up with the immune system and the kidney is rejected and dies. Then it is back on dialysis while awaiting another kidney that "matches". Actually, modern drugs can make just about any organ "match". You just go to the back of the line and wait until your name comes to the top. It takes 7-10 years, unless you are somebody important enough to get preferred treatment, but that's beyond our scope here.

Do you know what "brain dead" means? If you do, please let everybody know, because you are the only one! The laws that (very badly) regulate a doctor who will declare someone dead have been changed again and again, primarily to make it easier and quicker to change the legal status of a person from "living" to "dead" and get the body into the hands of the transplant team. The situation is so confusing that the studies which have been done to determine whether guidelines are being properly followed have found that the "compliance rate" is only 35%. Nearly two-thirds of death declarations are made prematurely or on the basis of insufficient testing. At one point the author wrote, "Whether you are judged to be living or dead depends on which doctor gets to you first." (p 45) He goes on, "I had hoped to write about the science of death determination. But the denial of death affects scientists, too…" There is no science of death determination!

The author relates visiting his father, who was in the ICU. He had a brief conversation with him. His father asked a question and responded clearly to the answer. A young doctor came in, interrupted, and took the author into the hall, to tell him not to be fooled by random noises, "Your father is in a coma and will not recover." As he stood, aghast, an older doctor came over and told him that is how young neurologists are trained. Guess which doctor I would have immediately ordered barred from further contact with the patient? The author doesn't say what he did about it.

The first big change came in 1968, when thirteen Harvard men gathered behind closed doors and hashed out a definition of "brain death" that has since superseded the old definition of death as "heart stopped, can't reliably restart it". Be it known that simpler (easier to apply) definitions have been implemented since then, step by step. Nowadays, the doctors want the heart to be in good working order, and they want it to keep the organs in good, transplantable condition. So when a patient has sufficient brain injury that they are unresponsive to the four or five typical tests (such as squirting ice water on your eardrum; if you have any awareness at all, you'll jerk and shout), your death is "pronounced" and the transplant team is notified. If the heart is having difficulty breathing, machinery is used to keep it going. Usually within minutes, unless your family very, very strenuously intervenes, your "operation" begins.

Do you think determining brain death ought to require some kind of objective test, such as monitoring blood flow to the cortex, or using an EEG? So does almost everybody except the transplant team. Where some wise person has forced an EEG to be used, about ten percent of the time the brain was active. There was just some problem with the brain stem. Past experience has shown that such persons can gradually recover, at least to some extent, and usually don't wish to die just yet.

Then there are NDEs, near-death experiences. There are thousands of such cases. In some, there was no EEG for many minutes, but after recovery the patient reported seeing or hearing things that happened during the "flat line" time. They were "brain dead", but clearly it was not a permanent condition, and they were somehow aware in spite of being legally dead. There are mysteries here that the doctors are very far from plumbing.

Laws are still being changed. In Washington, D.C. and a few other places, a declaration of "terminally ill" is enough to get you at least partially dissected, before your family is notified. And, more and more ICU's are effectively becoming places where early attempts at restoration are followed by "warehousing" until death can be pronounced. Frequently, most medical treatment is withheld at this stage, to quote: "In 1988, 51% of ICU patients died because medical treatment was withheld. By 1993, that number had shot up to 90%." (p242) If you take more than four or five days to recover in the ICU, you, too, could be the target of this kind of medical murder. Sure, some folks get "terminal enough" that it makes sense to pull the plug, but the difference between 51% and 90%, in just five years, is mostly related to a increasing pressure to find transplant donors.

A few bad apples spoil things for everyone. It seems the transplant industry has succeeded in attracting more than its share of bad apples. Doctors have angrily told the author that people are going to die because of his book. People may tell me the same thing over this review. I look at it this way, why should I support continued bad behavior? Put your house in order, and I'll support you. I am philosophically in favor of organ donation, but the current medical climate has turned the philosophy on its ear.

My driver's license indicates that I am a donor; I don't recall whether I actually said Yes or No or if I was even asked. I think the same applies to many of you. When you are getting a driver's license, if they ask about organ donation at all, it is done quickly, usually when you are distracted signing your name or filling in a form. Do you remember giving consent? Neither does my wife. She and I will probably get new licenses that say "No", very soon. Changes must be made in the organ transplant system before I will agree to be involved in any way.

Do you know which doctors get the highest pay? Transplant surgeons. $400,000 per year or more (that is their net, after they have paid their staff and so forth). Nurses, hospitals, and a host of others are paid large amounts for their participation. But it is illegal for the organ donor or the heirs to receive any money. They usually get stuck with large hospital bills for any unsuccessful attempts that were made to save the person's life! A week in the ICU can cost $100,000. I suggest the following:

• Mandate the use of both EEG and blood flow monitors to determine if the cortex is living or dead. Current tests only check certain brain stem functions, and poorly at that.
• Do not allow any member of the transplant team access to the patient until after the attending physician has pronounced death. That includes a "transplant team friendly" nurse, a frequent occurrence that ought to stop.
• Reduce the amount paid for transplant surgery to about 25% of current amounts.
• Require the donor's estate to be paid the same amount as the transplant surgeon(s), for the total of all operations involving this person's organs.
• Wipe off the books all medical costs accrued by the patient. Charge them to someone else if you must.

The monetary provisions above are controversial. While they may lead to conflict of interest within your family, they will greatly reduce conflict of interest among the doctors and hospitals. Who do you trust more, your kids or your doctor? If you don't trust your kids, you need help beyond the scope of this essay.

Meantime, what can we do?

• Make a living will, or advance directive, or whatever it is called where you live. Carefully think through every provision. This is not a one-hour job! Make sure all your relatives have a copy (even the faraway ones; you may get sick on a visit), and, of course, every doctor you are employing. Carry a copy when you travel.
• If you wish to be a donor, you would do well to get politically involved and work towards getting the five provisions above enacted into law. You don't want to be the one who isn't quite as dead as they thought you were, when the knife goes in. More importantly, get your spouse, parents, children and other relatives on the same page with you, so they will defend you adequately if needed, to prevent premature harvest.
• If you prefer not to donate, make sure there is no "red heart" or other indication on your driver's license that you are a donor. Have you ever looked? If it is there, get a new license, and state specifically that you DO NOT want to be a donor. It also might be a good idea to get a tattoo, preferably in the middle of the chest, in inch-high red letters, "NOT an Organ Donor!!". Show it to your relatives. Show it to your doctors. Make sure they all understand that your relatives will sue the butt off anyone who dissects you anyway.

I sure wish life were simpler.