Penalty of Success
by Lynn H.W. Banowsky, M.D.
Lynn H.W. Banowsky, M.D.
Dr. Banowsky was the primary driving force behind the founding of the Texas Transplantation Society and served as its first president in 1987. He was firmly committed to the concept that the transplant community throughout the State have a venue to address as a group issues facing the community, be they scientific, financial, legislative, etc. He trained at the Tulane University School of Medicine in New Orleans, completing a residency at the VA Hospital as well as the Charity Hospital in New Orleans. Dr. Banowsky completed a urology residency at Tulane University and taught there before moving to the University of New Mexico School of Medicine, where he established the renal transplant program, and then the Cleveland Clinic, where he was chief of the section of renal transplantation. He returned to Texas in 1977 to become the director of the renal transplant program at the UT Health Science Center and was also affiliated with the Santa Rosa Medical Center and the VA Hospital. In 1983 he established the Renal Transplant Program at what is now the Methodist Specialty and Transplant hospital, and was named surgeon emeritus of the Texas Transplant Institute before he retired. Dr. Banowsky participated in many committee and community activities, and is a past recipient of the Kathryn Dial Murray Gift of Life Award from the National Kidney Foundation.
Since retirement, Dr. Banowsky has published memoirs of his childhood and experiences from his medical career in "Quirk: the Literary Journal of the University of the Incarnate Word" and the "Palo Alto Review." He currently resides in Lawton, Oklahoma, with his wife, Tonya L. Riley-Banowsky and their rottwieller, Baby. He can be contacted at lynn.banowsky@gmail.com.
Dr. Bill Barnes' eyes drilled holes through our hospital administrator, Robert Mallory.
"How can you say there's no money to transplant this patient? If there isn't any money, it's because you aren't forceful enough with the county commissioners. Stop sucking up to them and demand the commissioners give you adequate monies to run this place like a hospital instead of a whorehouse."
Mallory leaned across the table and spoke too softly and too deliberately. "Barnes, you are an arrogant son of a bitch. You would be the first to squeal like a pig if your taxes went up one dollar."
Neither Bill Barnes nor Robert Mallory were jerks. They were venting their frustrations about the impossible situation patients, doctors, hospital administrators and social workers faced in 1970.
# # #
Prior to the late 1950's and 1960's, end-stage kidney disease was untreatable. It was as 100% fatal as jumping off the Empire State Building. Kidney failure was a silent killer, usually occurring without the benefit of pain as an early warning signal.
Initially, patients experienced a variety of non-specific signs and symptoms: chronic fatigue, nausea, itching skin, swelling of the feet and legs--symptoms more annoying, than horrifying.
It was the kind of death portrayed in movies. An unsuspecting man or woman went to the doctor. The patient just wasn't feeling right. After performing an examination and a few tests, the doctor sat down with the patient and said, "I'm sorry, but you only have a few weeks or months to live."
The distressed patient would say, "But doctor, this can't be. I don't feel that bad. Isn't there any treatment? I'm willing to go to Boston or New York City or even abroad."
The doctor would sadly shake his head, and explain how it wasn't a question of geography or finances. There was no treatment available anywhere at any price. The fatal outcome was unalterable and democratic; you were going to die soon of kidney failure, regardless of age, gender, importance to society, wealth or social position.
Then medical science begat a miracle. During the late 1950's and 1960's chronic kidney failure was no longer an automatic death sentence. Chronic hemodialysis and kidney transplantation, in carefully selected patients, were both providing stays of execution for indefinite periods of time.
Now the problem was similar to the one faced by the crew of the Titanic; medical life boats were available, but were too few to hold all the passengers. Some passengers who potentially could be rescued were going to drown.
In 1970, I was a young surgeon involved in a group decision-making process--a committee--that selected patients for the kidney transplant lifeboat.
I hated the committee.
So did the other five committee members.
# # #
The committee that would make life and death decisions was composed of six individuals with varied backgrounds. This diversity provided different medical, surgical and socio-economic perspectives. Our committee was all male, consisting of myself, nephrologist Bill Barnes, psychiatrist Henry Heath, hospital administrator Robert Mallory, social worker Larry Grantham and clergyman Father O'Shea.
Meetings were Fridays at 5 p.m. This awkward time was selected to protect us from ourselves. Surely, we would keep wrangling to a minimum and have efficient, civilized meetings to avoid leaving the building at 7 or 8 p.m. on a Friday night.
I rolled into the conference room at 4:55. As I had come to expect, our chairmen, Father O'Shea was already seated in his chair. I had been opposed to having a clergyman on the committee, but I was wrong. The good Father's agenda was so different from the other members, he was the only person all of us agreed was an honest broker.
I heard singing in the hall, and knew it was our psychiatrist, Henry Heath. The inclusion of a psychiatrist was a wise decision. He taught us that when someone feels like shit for months and doesn't know if he will live or die, we should expect some degree of abnormal behavior. The patients aren't nuts, just scared and sick. The important factor was determining if the patient had self-destructive behavior. Or, he would add, laughing, whether they might harm someone else--like their doctors.
Henry had a great sense of humor.
I heard the sound of squeaking shoes coming down the hall, announcing Larry Grantham, our social worker. He was the member of our group responsible for finding funds for our patients. Most of the time, Larry was our most valuable player. Finding funds for tissue typing donor and recipient pairs, for procuring donor organs, hospitalizations and post transplantation medications, was the most consistent problem limiting our ability to treat patients.
The ability to successfully transplant kidneys had caught the health insurance companies and state and federal governments by surprise. No entity was prepared to pay for treatment of a disease previously untreatable. There was a vigorous debate whether kidney transplantation was experimental surgery or a legitimate clinical treatment. No one wanted to pay, and there was a lot of back and forth finger pointing.
Larry was a pilot of the first order at navigating through the turbulent, unpredictable, bureaucratic waters of various insurance companies, state and federal agencies and private foundations to find the money.
He was also an arrogant, self-righteous prick. Easily the most disliked member of the committee, Larry never tired of accusing the M.D. committee members of being wealthy, social elitists and having self-serving motives. So far no one had assaulted Larry, but the committee had only existed for 12 months.
Walking in side by side at exactly 5 p.m. were Bill Barnes, nephrologist, and Robert Mallory, county hospital administrator. Both always were immaculately groomed and dressed. Neither man wore the polyester fabrics, wide ties, bell-bottom pants or leisure suits popular at the time. They wisely held firm to classical men's fashions and fabrics. Only their hair (Prince Valiant cut for Mallory and a perm for Barnes) betrayed they were men of the seventies. Similarity ended there. Each shared an extreme dislike of the other.
Mallory disliked Barnes for starting the first private dialysis unit outside the county hospital system. Barnes was accused of plucking the few funded patients for his private dialysis center and leaving the unfunded patients in the county system. Barnes' counter was that he provided a more efficient, cost effective and patient friendly environment.
Barnes held Mallory responsible for the lack of adequate funding for the hospital to care for the county's indigent patients, and for tolerating a system, that was bureaucratic, inefficient and at times neither patient nor doctor friendly.
Both were right and both were wrong. To their credit, most of the time they were able to work together, even though plenty of friction produced sparks.
Our chairman, Father O'Shea, called the meeting to order by offering a short prayer asking for God to grant the members patience, wisdom and compassion for patients and each other.
"We have a potentially contentious meeting today, because we will deal with two patients representing the recurring obstacles of age and diabetes. But first, let's start with a patient previously rejected by this committee. Larry, please bring us up to date on Mr. Gaines."
Larry Grantham gave a brief summary of the patient and ended by saying Mr. Gaines had been originally rejected because he had the unfortunate habit of drinking paint. This was a daily temptation, because by profession, he was a house painter. After his previous denial by the committee, he had promised to abstain from drinking paint.
Over the last three months, Mr. Gaines had totally abstained from the demon drink--paint. Larry recommended Mr. Gaines be put on the transplant list.
Heath, the psychiatrist, chuckled. Heath asked the social worker when he had last seen Mr. Gaines. Larry replied that he had seen him last week, and asked what Heath found so funny.
Heath had also seen the patient last week. He asked Larry if Mr. Gaines had substituted another substance to slack his thirst for paint.
Larry gave Heath a quizzical look.
Heath told him Gaines had discovered that eating spackling compound totally removed any craving for paint. Heath added Mr. Gaines also was treated in the E.R. over the weekend, after being beaten by his teenage daughter with a baseball bat. They were fighting over the T.V. remote control. It was the second such beating in six months.
The others looked at the ceiling or the floor. I was enjoying the social worker turning a variety of facial colors after being caught with his pants down. Larry allowed perhaps he should talk to Mr. Gaines again and look for a solution to his new dietary dilemma, and re-present Mr. Gaines at a later date.
Larry had a habit of adopting patients with unusual psychosocial problems. He persisted in continuing to be their champion even after the patient's physician asked for the patient to temporarily be removed from consideration. I considered letting the Gaines matter end for now, but thought better of it.
"Larry," I said, "Mr. Gaines doesn't have a relative willing to give him a kidney does he? And he has two brothers and a sister, right?"
"Yes, I believe that's correct."
"Why aren't his siblings willing to donate?" I asked.
"Well, over the years, there have been some problems between Mr. Gaines and his family," Larry said.
"Aren't they afraid he won't take care of himself, and their kidney would be wasted?" I was refusing to let Larry off the hook.
"That may be putting it a bit too strongly," said Larry.
"Larry, I know your job doesn't give you the opportunity to be part of the conversations we have with the families of accident victims considering organ donation. There is implied trust in us to use their loved one's kidney in the wisest way to help a deserving patient live. When the donor's family calls me in 6 months or a year--and some do--to ask what happened to their son's or mother's kidney, I'll be goddamned if I'm going to tell them the person who received the kidney died of an overdose of paint or was murdered by his daughter in a fight over a T.V. remote control."
"Everyone doesn't get an equal start in life. Mr. Gaines had a very troubled adolescence," sputtered Larry.
Heath looked at me before turning to Larry. "Larry, I think B's point is that we don't have the power to recreate someone's adolescence. We're forced to deal with whom they are now. It's frustrating for all of us to keep going over patients who are unlikely to change."
Heath turned to me and asked, "Did I accurately state your position?"
"Sort of. All of us need to remember we don't get these kidneys from a mail-order catalog. We have as serious a responsibility to the donors and their families, as we have to the recipients. Let's move on," I answered.
"We have two difficult patients to consider next," said Father O'Shea. "Difficult because each patient is a good candidate. But selecting either or both of them will cause us to violate our own rules-- our rules about not selecting individuals belonging to two certain groups of patients that we have deemed 'excessive risk.' Those group exclusions are potential recipients over 50 years of age, and recipients with insulin-dependent diabetes mellitus. We don't exclude patients because of gender or ethnicity or socio-economic status. Some of us feel it's wrong to categorically exclude patients because of age or the presence of diabetes. Shouldn't we evaluate each patient as an individual and make a decision based on the merits of that patient's case?"
This was one of the times I realized the appropriateness of the Dean insisting on a committee of six members, all with different backgrounds. Although we never spoke of it, none of us wanted the sole responsibility for some of the decisions we were forced to make. Having the input of five other professionals helped. The diffusion of guilt made it possible for us to tell patients bad news . . . and, after several days, be able to look in the mirror.
Our committee had not created the rules in a vacuum. We borrowed selection criteria from established, successful, transplant programs. The criteria were designed to safeguard recipients from reckless decisions, and were based on statistical data demonstrating factors that negatively impacted patient survival.
Survival statistics clearly demonstrated that patients over 50 years old or who had insulin-dependent diabetes mellitus had a greater likelihood of failure of the transplanted kidney or death of the recipient within the first transplant year.
The immunosuppressive drugs available in 1970 were lousy. If we didn't give enough, the kidney would be lost to rejection. Give too much and the patient would die of infection or cancer.
Aging and insulin-dependent diabetes mellitus both lower patients' resistance to infection and the development of malignant tumors. The addition of immunosuppressive drugs dramatically added to the risk.
Both age and insulin-dependent diabetes mellitus also are associated with a high frequency of hardening and blockage of the coronary arteries. There was no greater disappointing disaster than to have a happy patient with a new, functioning kidney drop dead of a heart attack or stroke.
There were good medical reasons for the rules.
It was common for many referrals to come from cities and towns outside our county. It was customary for these patients to be presented to the committee by one of the nephrologists on our staff. Bill Barnes presented Mr. Stone. Barnes had been thoroughly briefed by Mr. Stone's local nephrologist.
Barnes was a wonderful and enthusiastic advocate for high risk patients. As long as the patient was responsible and free of self destructive behavior, Bill sincerely believed they would benefit from a kidney transplant. He was the most aggressive, fearless, non-operating surgeon I knew, and a vocal, articulate, tenacious advocate for underdog patients.
Mr. Stone was just the sort of patient Barnes loved. Stone was in good general health and had a brother who was an eager donor. Stone had been the mayor of his small city, still worked as the head of his city's public service company, was Mr. Responsibility and was funded for both dialysis and transplantation.
Mr. Stone was also 57 years old. Too old, based on our rules.
When Barnes finished his presentation, he looked at me and said, "B, I'm sure you have questions. Why don't you start the discussion."
I sure did have questions. "How is Mr. Stone doing on dialysis?"
"He's a great dialysis patient. Takes his medicine, watches his fluid intake, shows up for appointments and still works almost full time," said Barnes.
"It sounds like he's doing very well on dialysis. Which begs the question, why does he want to subject himself to the risk of a transplant?" I said.
Barnes was smiling and ready for that question. "I do dialysis and believe in it with all my heart . . . but, I also know all of the failings of chronic dialysis. Dialysis keeps a person alive, meanwhile presiding over the slow deterioration of that person's body. Dialysis doesn't correct the anemia, so Mr. Stone is tired most of the time. He is restricted to about 600-800cc of fluid a day. His diet is low in protein, low in potassium, you know the diet. I tried the kidney-failure diet for five days. Let me tell you buddy, it sucks.
"Mr. Stone isn't on the diet for a short period of time to lose a few pounds and trim up. He's on it for the rest of his damned life. Oh yeah, Stone is impotent now, too; dialysis doesn't correct that complication of chronic kidney failure either," Barnes said.
Larry Grantham spoke up. "I'm assuming if Mr. Stone wasn't a former mayor, a person of local prominence, we wouldn't be considering him at all?"
Grantham's question stopped the meeting as abruptly as if he had launched a thunderous fart.
Barnes and I moved to the edge of our seats, and the veins on both our foreheads bulged. Our angry words were stillborn by Father O'Shea's preemptive verbal strike.
"Larry, you have deliberately thrown a verbal bomb into this room. Being inflammatory is no way to begin a debate on serious issues," said Father O'Shea. "You know full well when the members of this committee formulated the rules, it was done in good faith. The vote was unanimous that we would avoid the initial Seattle criteria for chronic dialysis patients. Social worth would not be a factor in our selection of either chronic dialysis or kidney transplant patients."
"Larry, don't hold it against Mr. Stone because he made something of his life and isn't a social misfit," said Barnes.
I added, "Larry, we're trying to make an important medical decision. Are we going to waive an existing criteria for selection--age? If you want to get on your discrimination high-horse, think about this one. Currently we discriminate against two large groups of patients not based on their gender, ethnicity, religion or social status, but because of their age or because they have insulin-dependent diabetes mellitus. This is the only part of our selection process where we don't look at the individual patient. We deny treatment because a patient falls into a certain group. Don't muddy the water by implying we are guilty of something we have never done. Show me one instance where a patient's social worth or lack of same influenced our decision one way or the other. I dare you."
Henry Heath said, "B, why don't you double dare Larry? Seriously, Larry don't pout about Mr. Gaines being turned down. Don't stir up trouble with what so far has been a non-issue. Your input on this problem of age is too valuable for you to deflect debate."
"I was just concerned, oh never mind," said Larry.
"Where were we?" said Father O'Shea.
"We were pointing out the risks inherent in transplanting older patients, especially those doing well on dialysis," I said.
"Yeah, and I was pointing out the quality of life with a functioning kidney is superior to the best chronic dialysis can offer. I think Mr. Stone, who is well aware of the risks, should have the right to choose," said Barnes.
"Has Stone had a cardiac evaluation and been screened for possible malignancies of the lung, colon and prostate?" I asked.
Barnes looked smug and said, "Yeah, and he's fine as far as we can tell. Let's vote."
The vote was five in favor of acceptance. I abstained.
Mr. Stone would get a seat in the lifeboat.
"Great," said Father O'Shea, "Let's go to the next patient."
As if on cue, the conference room door opened and in walked Dr. Donald Duncan, a staff nephrologist at the medical school. While not on the committee, he had the right to attend our meetings, especially when one of his patients was being presented. That consideration was given to all physicians with patients who wanted a new kidney, and their views on the patient's suitability were given added weight.
Duncan was a rotund man who was afflicted with the malady of lacking style. In 1970, men's fashion was atrocious, but Donald wore the bad clothes with enthusiasm. When seen late in the day, one could know what he had for breakfast and lunch by looking at his wide tie.
Duncan was as medically timid, as Barnes was aggressive. While a very capable and consciences physician, Duncan felt his primary responsibility, as a nephrologist, was to prevent the long knives of transplant surgeons from killing his patients.
Duncan and Barnes rarely agreed. When they did, each automatically questioned the validity of his position.
"Afternoon all," said Duncan. "My patient is being presented today against my wishes."
Heath leaned to me and whispered, "I see syrup, mustard and chocolate. I'm betting on pancakes for breakfast, a cheeseburger for lunch and a Fudgesicle as an afternoon snack."
"I'm sorry Henry, what did you say?" asked Father O'Shea.
"Father, I was just saying I know about this patient. Tough problem."
I knew the patient as well, and braced myself for a difficult and uncomfortable discussion. Marie Sandoval was a 26-year-old Hispanic female with insulin-dependent diabetes mellitus. Her diabetes had been poorly controlled. The poor control was to some extent Marie's and her family's fault, but to a larger degree was secondary to her socio-economic problems. She had the full range of diabetic complications: kidney failure, partial blindness, peripheral nerve damage causing difficulty walking and damage to the nerves supplying her stomach, intestines and bladder.
Although her medical problems were serious, she had some funding, a courageous attitude, intelligence and a strong family support system.
After reviewing Mrs. Sandoval's medical history, Duncan said, "Forgive me for the absurdity of asking this group to consider Marie as a transplant candidate, but she and her family insisted."
Dr. Barnes immediately interjected himself into the discussion. He felt strongly the young woman deserved the opportunity to receive a new kidney. Barnes stated this was an excellent patient to continue expansion of our recent (this very afternoon) course correction of no longer excluding groups of patients (insulin-dependent diabetics).
I agreed the woman might benefit from a kidney transplant. Some of the complications of the diabetes would be reversed, such as difficulty walking and poor function of her stomach and intestinal tract. A new kidney would not correct her poor vision, but on the whole her independence and quality of life would be significantly improved.
Marie was also not doing well on dialysis. Her high blood sugars stimulated the thirst center in the brain, and she regularly ingested too much fluid. This excess volume put an added strain on her heart and had precipitated two episodes of congestive heart failure.
I said, "I abstained on Mr. Stone, not because I didn't think he was a good candidate to be the first exception to our previously rigid policy on age, but because he was doing well on dialysis. I think Mrs. Sandoval has more medically compelling reasons for a transplant. I don't want the transplant program to be deluged with nothing but high-risk, older and diabetic patients. While we have a responsibility to the institution to obtain the best possible results, I feel this woman deserves a shot at a transplant."
Duncan said, "Whoa. I feel for Mrs. Sandoval, too. But we can't fix everybody. Diabetics have poor wound healing and are more prone to infections without the added risk of the immunosuppressive drugs. The corticosteroids would skyrocket her blood sugars. How would she see to take her medication being legally blind? And did she know, if accepted, she would be our center's first insulin-dependent diabetic to receive a kidney transplant? This is just too risky and I'm strongly, strongly opposed."
Harry Heath spoke up. "I spent a long time talking with Mrs. Sandoval and her family. I've been impressed with the courage shown by virtually all of our patients, but this woman is a dandy, a jim-dandy. Her husband was killed three years ago in an automobile accident. She lives in a house with her two children aged 6 and 8. Mrs. Sandoval runs that house herself with the help of the children. She cooks, cleans and does her own laundry. There's no dryer in the house. Marie and the 8 year old hang their clothes on a clothesline together. Marie's dad does their shopping and takes her to doctor appointments.
"She learned Braille two years ago and reads to the kids," Heath continued. "She wants the transplant so the nerve damage to her legs will improve. At all costs, she wants to avoid being in a wheelchair. Marie says they can do just fine, as long as she can walk. Even if she needs a cane. The woman is amazing, she's goddamn amazing."
Dr. Barnes added he had already spoken with the endocrinologists, and together, they were working on protocols to adjust insulin doses to compensate for the corticosteroid effect on blood sugars. Larry said Social Services had procured glucose strips for her to use at home to help adjust her insulin doses. A visiting nurse service was already on board.
Duncan boomed, "The lady is blind. Who the hell is going to read the glucose strips?"
Larry smirked. "The home health nurse has shown the 8 year old how to read them. The boy already acts as her eyes for many things. He could do it perfectly after three lessons, and has been helping his mother draw up her insulin for almost a year."
Mr. Mallory, the hospital administrator gave tepid support. "Mrs. Sandoval's funding was inadequate to cover all expenses. Her in-hospital stay would be longer than a non-diabetic, and she would more than likely have a higher readmission rate . . . but, I think I can swing it. She is a county resident. If the transplant is successful, I want the hospital to get positive coverage in the media. Also a statement about our center being comparable to older, bigger programs. And mention we think a successful transplant will save the county money compared to a lifetime of dialysis."
"And you'll save even more if she dies," grumbled Duncan.
Barnes mumbled, "Asshole."
"Unless there is more discussion, it's time to vote," said Father O'Shea. "All those in favor of accepting Mrs. Sandoval, raise their hands."
Barnes, Grantham, Heath and I raised our hands. Mallory partially raised his hand.
Father O'Shea said, "Mr. Mallory is that a yes vote?"
Mallory nodded.
Duncan crossed his arms over his ample belly. "No. No. No. And if I have a veto, I'm using it."
I thought he looked like a rumpled, defiant Buddha.
Mrs. Sandoval had the support of everyone but her own doctor.
I addressed Dr. Duncan. "Dave, this is a real pisser. Everyone wants to give this woman a chance but you."
Duncan pursed his lips and puffed himself up even more. "I am the physician responsible for Mrs. Sandoval. None of you know her as well as I do. Yes, she has all of the wonderful attributes you've mentioned. But she has unrealistic expectations. Am I the only one here who remembers she has a one-in-three chance of dying during the first post transplant year? Yeah, one out of three. What she wants isn't the best thing for her."
Duncan looked directly at me and said, "I'm surprised at you. You have argued for a year, about not being reckless in our selection of patients. About owing it to the institution to get the best possible results. About the wisest use of a limited resource like kidneys. Is your ego demanding now that we do what bigger, more established programs are doing? Is that it?"
A lot of what Duncan said was true, and I wanted to carefully frame my answer. "Dave, you are right on with most of what you said. Including my wanting to move our program more closely to what the big programs do. Maybe some of it is ego. I believe we have a good program run by responsible people. I think we are ready to take this step forward."
I paused and looked around the room. "Bill Barnes is correct, when he says I've cherry picked the very best patients for transplantation. The patients I've transplanted so far, aside from their kidney disease, are fit enough for jump school and Airborne duty . . . and they goddamned well should have been. We were learning. We have a big transition to consider. Do we keep kidney transplantation as a medical gimmick, or do we slowly move it closer to being a partner with chronic hemodialysis in the treatment of patients with end-stage kidney disease?"
Dr. Barnes looked around the table and said, "This discussion is long overdue. Both forms of treatment have advantages and disadvantages. We need to realize some patients may do better with dialysis and some with transplantation. As for this patient, she seems perfect to be our first diabetic transplant recipient. Don't forget our state has a large Hispanic population, and they have a very high percentage of kidney failure from diabetes."
Father O'Shea said, "Gentleman, I agree we needed this discussion about a possible new direction for our program. It seems to me this lady has valid reasons for preferring transplantation to chronic dialysis. She needs to be able to walk to take care of her children. Dr. Duncan, if Mrs. Sandoval stays on dialysis will the nerve damage to her legs progress to the point she will be unable to walk?"
"Yes, in a year, more or less, she will likely be in a wheelchair," Duncan said.
Henry Heath said, "If the transplant works, will the nerve damage to her legs be reversible? And will her overall quality of life be better than the best she could achieve on dialysis?"
Duncan begin to look uncomfortable, as he responded. "Yes, the nerve damage is reversible, and yes, her quality of life would be better if the kidney worked, but that's a big 'if.' She could also die, and then her two children would be without a mother."
Father O'Shea spoke very gently. "Dr. Duncan, all of us are going to die. Shouldn't this good lady have a say so in how she's going to live? God will still decide when she's going to die."
Duncan seemed much less sure of his position, but was still short of giving in. "Father, it's not that simple. We aren't running a department store or supermarket. Patients don't come in and select a product they want and can afford. They are seeking our best advice, based on risk versus benefit, about the safest treatment for them. Our advice is our product."
"Dave, there are six of us whose best advice is to select Mrs. Sandoval for transplantation," I said. "You are the only dissenter. You are also her doctor. It has not been our policy to select a patient when there is strong opposition from that patient's doctor, so I guess you do have a veto . . . if you choose to use it."
Harry Heath used his most reasonable tone of voice. "Dave, this is a difficult problem. I think our discussion has raised a lot of points for all of us to consider. How would it suit you, if we held off making a decision today? Why don't you talk to Mrs. Sandoval and present to her again your concern for her safety. See what the two of you come up with. Could you come to this meeting next Friday and see if we can't come to a unanimous decision?"
Heath had given Duncan a way out. No one is comfortable standing alone on a difficult, important issue. Especially, when they know the majority has a valid position.
Duncan immediately looked less defiant. His face relaxed as he said, "Sure, I could be here next week. I'll talk to Mrs. Sandoval and see if she still feels as strongly about a transplant."
There was no disagreement and Father O'Shea moved to the next patient.
Bill Barnes spoke for the next patient, Mr. Jorge Padilla, a 30-year-old Hispanic man with kidney failure from nephritis. Mr. Padilla was in excellent health except for his kidney failure. He was a hard-working handyman. Smart, with strong family support, no drug or alcohol problems and a healthy brother who volunteered to donate a kidney. Perfect . . .
Unfortunately, Mr. Padilla was from out of our county, and as far as we knew, not eligible for funding from any source.
The county hospital administrator, Mr. Mallory, spoke first.
"The hospital district gives us a budget for the treatment of unfunded out-of-county patients. You all are aware or should be, that those monies are for all forms of treatment: serious trauma, complicated obstetrical patients, cancer patients, children with serious birth defects and on and on," Mallory said. "This money is not a special fund for patients with chronic kidney failure. So far this year, we have funded transplant care for four out-of-county patients--including their pre-transplant dialysis and post-operative medications. There is no money available for this man, regardless of how deserving he may be."
Mr. Mallory knew what was coming. He was in a small boat with a hurricane approaching. The natural tension that existed between the businessman and the healing profession erupted.
A 20-foot wave came from the social worker. "That's unconscionable. Is money the most important thing to you?"
The psychiatrist helped Mallory bail water. "Gee Bob, you're a smart business guy. Surely you can find the money, if you try hard enough."
The clergyman offered a life jacket. "Isn't there fat in some of the other programs you can trim?"
Then came a wave that blotted out the sun with Bill Barnes riding on the crest, "How can you say there's no money to transplant this patient? If there isn't any money, it's because you aren't forceful enough with the county commissioners. Stop sucking up to them and demand they give you adequate monies to run this place like a hospital instead of a whorehouse."
Mallory leaned across the table and spoke too softly and too deliberately. "Barnes, you are an arrogant son-of-a-bitch. You'd be the first to squeal like a pig if your county taxes went up one dollar."
I said we needed to get a grip on ourselves. The clergyman said we were all on the same side. The psychiatrist said he had two afternoons open next Tuesday and Wednesday and would be happy to extend professional courtesy to any of us who were interested.
Everyone except Barnes and Mallory laughed.
"Surely," I said, "There is some way to solve this problem."
Barnes said, "The problem is worse than not being able to transplant this fellow. He has to drive 50 miles each way to get to my dialysis unit. He hasn't been able to work for two months and gas money plus medications are becoming more difficult for him to manage. We don't have either the dialysis machines or the funding to put him on chronic dialysis either. My technicians have been working an extra shift just for him. I have been carrying him financially, assuming he would be transplanted soon. If he isn't transplanted, at some point I'll have to stop treating him."
The room became silent and the waters calm.
We were in the eye of the hurricane.
"So that's it," said Mallory. "You're feeling guilty because you don't have the resources to treat him much longer, and you want me to be the heavy."
Barnes was silent and looked at the table.
We were all thinking the same thing. If there was no funding for transplantation and there was no room or money for chronic dialysis, this young man was going to die. What made it gut wrenching was the man had started dialysis expecting an imminent transplant. Without a solution, someone--Barnes, would have to tell the patient and family all treatment would be stopped.
Jorge Padilla, age 30, would die. No lifeboat for him.
Father O'Shea suggested we go around the room and make certain we had exhausted all possibilities of help.
Father O'Shea said that in addition to praying, he would check with the city's ecumenical council and ask for help with fund raisers.
Larry Grantham said he would check again for any possible sources of money, but he wasn't hopeful. Larry was so thorough, I assumed his lack of optimism was well founded.
Heath, the psychiatrist, said sadly but correctly, he had no tools to solve this type of problem.
I said, "I'm salaried, so my surgical fee and post-operative care fee are always waived. There are two pharmaceutical firms that have helped us before, maybe they will again."
Barnes said he had already waived his fees and was donating supplies and technician time, but he had to draw the line at buying dialysis machines. Like the hospital, he had to pay his nurses, dialysis technicians, vendors and lease agreement.
Father O'Shea reminded us, "Haven't we already asked the pharmaceutical companies for favors?"
"Yeah," I said. "They donated our kidney preservation unit and provide post-transplant immunosuppressive medications free for patients with no money. They also have made several directed cash donations to the Kidney Foundation to help defray costs for some patients. I don't know how much more we can ask of them."
"Well, they can afford it," said Larry.
"Damn it Larry, don't dump on the people who have helped us. I hope Larry isn't the one whose asking them to help this poor guy," said Barnes.
Father O'Shea said, "We can only ask so much of groups that have helped us before. There is a limit to the number of corporate donations, personal donations, bake sales, golf tournaments and the like people are willing to do."
All conversation stopped. Funding was our most limiting factor, and it was funding over which we had the least control.
We had access to medical lifeboats, some of which leaked, but we needed more, leaky or not. There needed to be enough lifeboats to accommodate all the drowning people.
After a few moments, Father O'Shea said, "Although there are two more patients, they're not urgent and could wait until next week. We have all had enough for today."
I walked to the parking lot with Heath.
I said, "This is a mess isn't it? The transplant program exists by begging people for favors. A program isn't sustainable in this manner for any length of time. God, what if we don't get funding for that last man? What if he dies because he doesn't live in this county? How in the hell can anyone justify that? How can anyone explain it to the man or his family?"
Heath replied, "Yeah, things were easier when all of these patients just died. Right? When there wasn't any treatment for kidney failure and all the patients died. There weren't any hard decisions for any of us to make . . . think about it. The hard decisions are the penalty of medicine's success."
Heath said, "See you next week."
"Yeah, next week," I replied.
Epilogue
On October 30, 1972, as a result of the Social Security Amendments, (Public Law 92-603, Section 2991) the United States Congress passed the End Stage Renal Disease Medicare Program bill. For the first time, Medicare benefits would include patients under age 65 years. This legislation provided coverage for chronic dialysis and kidney transplantation for over 90% of all United States citizens with chronic kidney failure. The committee was no longer required. The lifeboats were funded.
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